Caleb Paul Hlebiczki

Kiwanis Award Winner

2012-01-24T13:38:00.000-05:00

Caleb was nominated by his teacher, Ms. Doris, and school for the Kiwanis Award. This award is for special needs kiddos and recognizing their accomplishments and improvements. He is loved by everyone at his school and it was so sweet to hear they had nominated him. The ceremony was today and they read the letter his teacher wrote for the nomination at the ceremony. I fought back the tears, it was beautiful!

Caleb did well throughout the ceremony until everyone clapped. Thank goodness he was the first kiddo, because after everyone clapped for him he cried (one of his sensory aversions that we think dates back to when the IV team would finally get an IV we would all cheer) and he was scared to go back to the area where they had the ceremony. He didn't want to take part in the group picture either for the paper :( but he did great. We are so very proud of him. He is one amazing kid! He has taught me so so much. We love you Caleb and are so proud of you!

Right before the ceremony started! How cute is he?!?!

Sorry about the hand in the picture. Oops!

He still wasn't sure what was going on! Awesome ceremony!

God Bless you all!!

God Bless Caleb and Camryn!!

Short update

2011-12-30T15:41:00.001-05:00

Hi all! So Caleb seems tired today, completely understandable. He had an early and tough day yesterday. Brian surprised him today with two new fish for his fish tank, because he was so brave yesterday.
One of our newer goals, along with communication, is self help skills, (dressing, brushing teeth, bathroom etc.) and I am so proud of Caleb that he just put on his own pants. Great job little man. We are so proud of you!

God Bless you all!!

God Bless Caleb and Camryn!!

What a long day!

2011-12-29T15:13:00.002-05:00

Hi all, I just wanted to give a quick update. Caleb had the shunt series and catscan this morning and all looked normal but the doctors were concerned about Caleb's symptoms and how they were similar when the last shunt failed, so they ordered another type of shunt series. This one is a bit more invasive (and there is another risk of infection as you are entering into the spinal fluid) as they tap (put a needle in the head and drain some of the spinal fluid out of the shunt) shunt. Then after they check the pressure and take samples for cultures they injected dye into the shunt and watch with an x-ray to check the flow of the shunt and all looked great! The only test pending is the cultures (to see if an infection is starting from the surgery), from the spinal fluid. That will be a couple days until we know. So, we still aren't sure what caused the wretching episodes and the lack of appetite. Hoping it's just a virus. I was told to watch him closely and if things get bad again to take him to the ER at Children's. Today was a very emotional day for us. Now I just want to relax and cuddle with my kiddos and wait for my hubby to get home. Thank you all for the prayers! I will keep you updated on Caleb and pray that there are no infections from the shunt being tapped. I am seriously thinking we need to find some contest to enter for a vacation-we need one, desperately. A lot of stress lately!

Thanks again for checking in and all the support and prayers!

I will keep you all updated!

God Bless you all!!

God Bless Caleb and Camryn!!

Tests.

2011-12-28T21:15:00.001-05:00

Early morning tomorrow. Heading to Children's, for Caleb, for a Shunt Series X-ray, Catscan, and a visit with Neurosurgery afterwards. I will post any updates when I have them!

God Bless you all!!

God Bless Caleb and Camryn!!

What is going on with my lil' man? UPDATED

2011-12-28T12:32:00.004-05:00

I am writing this post as a very emotional mommy who has watched her little boy have so much sickness lately and who is sick again. I am emotional because I feel so bad that I cannot figure out all the time what is making him feel so sick; and emotional that he has had a rough time lately.

Christmas Eve Caleb woke up with a very nasty cough that earned him a trip to Med Express. He was put on an antibiotic and breathing treatments. Caleb did not eat a thing that day. And once again, we can't ask him why as he can't tell us. Later that day Caleb started dry heaving which we wondered if it was due to the congestion or was he getting a GI bug on top of the cold. But in the back of my mind I am warped from the dry heaving he had recently with the shunt and found myself automatically fearing that also. And again, he can't tell us why he was dry heaving. :( The next day, Christmas Day, Caleb did not eat at all and Brian's and my stress level continued to rise as we just don't know what is going on with him. Well, the day after Christmas Caleb ate a little bit more BUT today he hasn't and had a very bad dry heaving episode again and is now asleep on the couch-very far from his typical behavior.

I am writing this to ask for HUGE PRAYERS! I want my baby to feel better, to catch a break! I try not to be negative, but I am very upset seeing him like this lately and not being able to fix it. Please pray that he feels better and this is nothing serious and please pray for me and Brian that we are less anxious and stressed! Thank you friends!

UPDATE: He is awake, and acting normal. Good that he is acting normal BUT, still puzzled by the wretching this morning. Heard back from Children's and now we are consulting with Neurosurgery to see what they think.

Neurosurgery has scheduled Caleb for some imaging in the morning to check on his brain and see how the shunt is working and if it is the culprit of these symptoms.

God Bless you all!!

God Bless Caleb and Camryn!!

A Very Sweet Moment I Caught this Morning

2011-12-17T13:13:00.004-05:00

Despite Camryn feeling a bit crummy this morning due to a cold, she always has love for her brother.

God Bless you all!!

God Bless Caleb and Camryn!!

Never a Dull Moment!

2011-12-14T11:58:00.001-05:00

Caleb and his dog were playing, and Izzy's nail scraped Caleb's head. It bled a lot. Thanks Mom for rushing down here to help me! The bleeding has slowed but it is still bleeding and wondering now if he needs a stitch or two.

God Bless you all!!

God Bless Caleb and Camryn!!

New Eye Patch

2011-12-13T21:24:00.001-05:00

Well, Caleb's other eye patch was breaking down his skin. So we are trying this one that fits over his glasses. He didn't seem to mind it too much.

God Bless you all!!

God Bless Caleb and Camryn!!

Caleb Hlebiczki Medical Fund

2011-12-13T13:07:00.000-05:00

As most of you know, we used to have a Fund where you can mail checks to donate to the Caleb Hlebiczki Medical Fund. We had to switch banks and now have the new fund set up at bank closer to us which makes it a bit easier! So please notice the new info on the right of this screen detailing the fund. This fund helps us pay off our very big pile of medical bills, which has gotten even bigger after Caleb's recent hospitalization and brain surgery. We cannot thank you all enough not only for your monetary support by the HUGE amount of emotional support. You all lift us up and have really helped us. We thank you so much!

God Bless you all!!

God Bless Caleb and Camryn!!

The Wheels on the Bus

2011-12-12T09:19:00.003-05:00

Well, I talked the transportation director and it didn't go as I had hoped. Unfortunately, he believes that the buses cannot make it down our street and he 'has never sent a bus down this street in the 30 years he has been with the department'. So where does this leave us. I am conflicted. I think riding the bus is a good experience for independence, but the in the same regard he has a harder time walking with the winter gear on, a bit harder for his balance issues. I just wonder if I should start dropping him off again and picking him up until spring. Bummer, but it may be necessary!

More updates soon!

God Bless you all!!

God Bless Caleb and Camryn!!

Neurosurgery appointment

2011-12-03T21:05:00.001-05:00

Well, Caleb's appointment went well! The doctor said Caleb's incision looks great. She also said she would think his fever would have come back by now if it was shunt related. I hope and pray she is right!

Thanks for checking in on us!

God Bless you all!!

God Bless Caleb and Camryn!!

A cold

2011-12-01T22:26:00.001-05:00

Hi all! So it looks like the chicken pox case was while Caleb was out for his surgery. Phew. No we pray noone else in his class while the other child got it, doesn't get it and then expose Caybay.

Caybay has been back to school for three days and already has a cold. This is why I hate winter!

We are off to a post op checkup tomorrow for Caybay. Hoping all goes well!

Also, I know have a blogger app for my phone, that will now make updates easier. They may not be lengthy, but more frequent!

I will post how the appt goes!

God Bless you all!!

God Bless Caleb and Camryn!!

On Our Toes

2011-11-30T09:40:00.001-05:00

Hello all,
Sorry for the delay in posts. I wanted to get everyone up to speed on what has happened the past couple weeks. Caleb about three weeks ago starting having bouts of acting 'off', screaming in pain, dry heaving, and very tired but then followed by a happy Caleb. We were very puzzled, but the bouts didn't stop, they got worse. At first, it was thought he may be constipated, but Brian and I didn't think this was the cause. So we took him to Children's. After a lot of tests came back normal in the ER they wanted to admit him for observation. The bouts continued to come and go until one day he had an episode that lasted for about 20 hrs. It was horrible and very scary. Because Caleb cannot tell us where the pain is, it is very hard to determine the cause and also so heartbreaking not to be able to help. Caleb was VERY sick. The neurosurgeons then decided, with Brian's urging, to check the shunt in Caleb's brain. The shunt tap looked 'normal' but with more tests coming back normal the Neurosurgeon attending believed she needed to take Caleb to the OR to see if the shunt was working correctly! I don't think Brian and I were so happy to hear that the shunt wasn't working %100, and that this may be the problem. Now, we have to wait and see if any of the weird symptoms reappear and pray Caleb stays infection free. We would appreciate everyone's prayers. Again, Caleb also has a facebook page, Caleb Hlebiczki is a Fighter, where I post ALOT of updates. Caleb spiked a temp this Saturday, but we are praying it was something viral and nothing related to the shunt and that he doesn't have any more fevers.

Caleb returned to school yesterday. He is such an amazing little boy! I have been working on his alphabet with him for a long time and he usually would repeat what I said, but never said it on his own. Yesterday, after he got of the bus he was walking and I heard him singing 'a, b, c, d, e, f, g' I wanted to start crying! My baby was singing the alphabet. He sang to g! I was so proud of him! What a great walk.

When we got home, I was going through all the papers from his school and one was from his teacher. One of the kids in Caleb's class got chicken pox. I immediately started to panic. Caleb cannot get this vaccine and neither can Camryn (to protect Caleb) as it is a 'live' vaccine. Chicken pox is a very scary virus for immunocompromised people. I have sent Dr. Markert an email asking her what I should do as far as school and I am waiting to hear from her!

Again, I apologize for the lengthy delay in updates and I will update more as I know! Please continue to keep him in your prayers!

God Bless you all!!

God Bless Caleb and Camryn!!

A Couple Updates

2011-09-13T14:48:00.000-04:00

Hey all,
So it's been awhile since I updated. But just wanted to let you know of a couple medical issues going on.

His Thyroid is really still bothering him, he seems very lethargic and moody at times. With levels like he has I am not surprised! He will go for another blood draw on the 19th to see where his levels are and then decide if and what medications are needed.

Caleb fell this past weekend, really hard. He doesn't not have the best balance and add that on to a yard he has never played in before, can be a recipe for disaster and it was. He was walking in the yard and then started to stumble and quickly lost his balance and fell face forward on to a sidewalk splitting his forehead wide open. His head made a noise when it hit the sidewalk that I don't think I will ever forget. He was cut pretty bad and we rushed to the ER where they did a catscan, which checked out OK, and then some stiches. He was a trooper. We don't think the numbing medicine worked at all for him so unfortunately, we think he felt all the stitches being done. Broke my heart. This is Caleb's first set of stitches not resulting from a surgery! He did not have much of an appetite for a day or two afterward but that could also be a part of his thyroid too.

Also, Caleb went back to his optometrist today for a checkup to see how his glasses were helping his lazy eye. His eye still has lazy tendencies, but when he blinks it corrects itself which is good. However, his doctor now want us to patch his good eye to try to strengthen the weaker eye for 2 hours a day for six months. We just saw her today so we haven't patched yet, but I will let you all know how it goes :)

Also, yesterday was Caleb's 4 yr Anniversary of receiving his Thymus Transplant! Thank you Dr. Markert and your wonderful team for all the amazing work you do!

Also, please don't forget if you are on Facebook there is a Caleb Hlebiczki is a Fighter page, where I post a lot of updates!

God Bless you all!!

God Bless Caleb and Camryn!!

A Little Scare

2011-08-19T15:33:00.004-04:00

So Tuesday morning Caybay started acting 'off' again. Once again this is so hard when you know something is bothering him and he cannot communicate his emotions. We watched him closely and he was getting more and more tired and by Wednesday afternoon, his pediatrician said to take him to the local ER. We weren't at the local ER long before they called Children's for Transport, this time it was an ambulance and not a helicopter. By the time we got to Children's, Caleb was getting more and more lethargic and not waking up and when he was up he was dry heaving. So after five sticks, they finally started an IV and with two very large fluid boluses he wasn't perking up. They then decided to do some xrays of his head to check his shunt and his belly to check his intestines. All looked good. But, he still wasn't waking up which yielded and admission. We were hoping we would never see the inside of the new Children's Hospital patient rooms, but we did. WOW they were gorgeous compared to what we lived in to for a year and a half at the old hospital. They had bathrooms in them with showers! Wow that would have been nice to have that when we were there! I am so happy they have that for families now! So when we got up to the room Caybay perked up and we got to see some of our old friends, nurses and docs when we were in his room! He stayed up for a bit but quickly went to bed! By the next morning I was hoping he would be more perky, but not so much. I asked for some more nausea meds as we were hoping with that maybe we could get him to eat and was hoping that would really perk him up. It slowly did, and as more and more labs came back normal, the talk of him going him if we felt comfortable with that, was being discussed. We know the docs so well and I love that since they know us and feel confident that we know signs of when to bring him back if need be, they gave us the option to bring him home. So he is home, still pale but acting more and more like himself. We aren't really sure what caused it. We are thinking a virus. It is so hard when you have a child that can't communicate and has such an extensive medical history. But he is relaxing now and hopefully continuing on the mend. Thank you all for your prayers!

God Bless you all!!

God Bless Caleb and Camryn!!

OOPS

2011-08-12T18:18:00.005-04:00

Okay sorry for the delay. Two kiddos keeps you very busy! So I apologize. I would like to make a note for those of you that don't know. Caleb does have a facebook page, where I post quick updates very often. If you want to follow that way, do a search for 'Caleb Hlebiczki is a Fighter'.

So on to the updates.

The beach trip went well. Caleb unfortunately waited until the last day to try the beach out. We sat right at the water's edge and he loved it. He played in the sand, saw fish, and even enjoyed some of the tiny waves (since we were so far out). We had a great time. The weather was a lot better this year and that was a definite bonus also.

Miracle League was fantastic! When we showed up they told us Caybay was going to be second at bat. BUT to all of our surprise he was first. He didn't want to wear the helmet at all. But with Brian's help, as Bri was his buddy, Caleb batted and was the first to score. I loved the game. It was so great to see these kids have this opportunity. They are still trying to raise money for the local Miracle League Field, and are getting there. I just heard today that someone donated the concession stand for the field. People are amazing.

Pics of the beach trip and some videos are coming soon. I have the pics uploaded just have to figure out how to convert the video.

Caleb also just celebrated his 5th birthday. Yes my baby is FIVE. Unfortunately, right around his birthday we noticed Caleb acting very very tired. He actually slept through his bday party, definitely not typical Caleb behavior. He did end up having a bug that he shared with his sister, but while doing some bloodwork they did realize they think he may have thyroid disease. So this is probably the cause of him being a bit more tired than normal. Thirty percent of the kiddos who received the same transplant Caleb had did get Thyroid Disease. We see the endocrinologists on the 29th to see what is needed as far as meds.

He is doing great with his glasses. He is a pro at taking them off and putting them on. Who would have thought?!?!

Well I am going to try to figure out how to get the bday video and miracle league videos uploaded to the computer. So check back soon!

God Bless you all!!

God Bless Caleb and Camryn!!

No words..just upsetting

2011-05-10T14:55:00.002-04:00

So today I took Caleb to the doctor to see what she thinks about the new 'lazy' eye movement in one of Caleb's eyes (this has nothing to do with the other eye issue of draining). After she examined him, she believes Caleb needs glasses. (deep sigh) I know to some glasses may not be a big deal but to most, glasses are their only 'handicap'. I am just so upset because he has so much already to deal with and now this is getting added into the mix. I mean come one, this kid had one of the rarest and severe issues with this syndrome, his immune issues, along with the brain, heart, hips, deafness, speech, the missing eye drainage and duct issue, pancreatitis, cleft lip and palate, delays, hernia, etc. We really have to throw eyes in to the mix?!? I teared up on the drive home because I found myself reverting back to my old thoughts of 'why' and 'this just isn't fair he has got enough to deal with' . Yes, I know he is strong and he will prove to everyone that this too will not get him down, but he already has sooo much to contend with. (sigh)

Well I got to get back to calling around to the limited people within our network to see who supplies kids frames and is familiar with dealing with fittings with hearing aids. So far I have only find one person in network who says that they carry kid frames, but the not many. I have one other business to call.

God Bless you all!!

God Bless Caleb and Camryn!!

Eye Appointment Clarification and Just a Note

2011-04-21T08:40:00.002-04:00

So first things first. I wanted to clarify more on the eye appointment. While we were there yesterday the doctor did mention the word 'fistula' when talking about the possible present puncta. I wasn't understanding her explanation so I asked one of our friends and she explained it to me this way. 'A fistula is an abnormal connection between two body parts, can be due to disease or surgery. Apunctual fistula could be just a blind tube into the lid that isn't draining into the nose like it is supposed to or it could be an abnormal connection' Thanks Sarah (Evan -fellow CHARGEr and Trevor's mommy) for the explanation. So I assume if they wonder if it is a fistula that they will figure out what is going on when they look at it in the OR and go from there.

Also, I just wanted to make a small note. It made me sad to once again come across how ignorant some adults are. I have always been very sensitive to the respect handicapped and disabled indivuals deserve from others, as I think most of us are. I saw a comment on FB yesterday, followed by more disrespectful comments regarding a handicapped individual. These comments came from 'adults'. It makes me sad that people behave like this. These are parents, professional individuals, etc. I just don't understand what goes through people's minds to believe that the rude things that come out of their mouths regarding another HUMAN BEING are justified. I am sick to my stomach about it and it has bothered me. Sorry just waned to share my experience. If you hear someone making rude comments about a handicapped/disabled individual remind them we are all HUMAN! I really hope those individuals realize how hurtful their comments can be!

God Bless you all!!

God Bless Caleb and Camryn!!

More Talking, Feeding Sissy, and an Eye Infection

2011-04-20T14:25:00.005-04:00

Hey all!

Well two quick updates!

So this past Friday it was nice here so Bri and I and the kids were outside. Bri and I both did some yardwork and at one point I found a worm and took it over to Caleb to show him. This is kind of how it went:
Me: 'look Caleb a worm'
Caleb: 'aterpillar'
Me: 'no not a caterpillar, a worm. Worm. Worm' (repetition works well for him to hear) 'do you want to touch it?'
Caleb: 'no'
Me: 'oh come one, yeah you do'
you could see him hesitating but he finally touched it and then so excitedly he turned to Brian and screamed 'I TOUCH IT!' It was so great to see how excited he got and to hear him put together a sentence-ON HIS OWN!

Lastnight I was doing the dishes and turned around and saw this:

When I saw it, I teared up and stood and watched. Not only was he doing a great job but he took it on his own to go over to the table and get her food to feed her. They were giggling. He was so good at it.

Well, Caleb has another eye infection and the Ocularplastic Surgeon told us if he should get another one to call her or take him to the Children's ER. So I called her this morning and she did not have office hours but agreed to come in to see him to see how his eye handles an eye infection (this has nothing to do with the 'lazy eye'). So she thinks from what she can see that he possibly has puncta that they may just not be in the typical place that you or I may have them-she said she will know better when she sees him in the OR when they re-do his nose from his cleft. But she said the encouraging news is she does not think there is anything wrong with the tear duct (not to be confused with the puncta-the hole that drains to the tear duct) so she was very happy she got to see him. There was even another doctor who looked at him too and gave the same opinion. So he is on an antibiotic and hopefully that will help and then we can use it as needed when his eyes act up. I really like this doctor, what a great person to make the time to come in and see what is going on.

So this is where we are!

Thanks for checking in!

God Bless you all!!

God Bless Caleb and Camryn!!

Easter Bunny and Welcome Sissy Camryn to Blogger

2011-04-14T15:04:00.005-04:00

Hi Everyone! So I met Brian for lunch today with the kids at our mall and we saw that the Easter Bunny was there. We have never done this with Caleb before as we were concerned with the germs that he could be exposed to. But we decided that since he is going to school, maybe we should do this! So we walked by the Easter Bunny once so Caleb could see him and then came back a couple minutes later. There was noone there and the Easter Bunny was awesome he played games with Caleb to get him more comfortable. It took a couple of shots to get both Caleb and Camryn to look forward but they did great. Caleb hid and wouldn't take his fingers out of his mouth but he did great! I was worried that they didn't have 'easter outfits' on and then I realized-wait back in the day something like this didn't seem possible to do with him. Who cares what he is wearing, he is sitting on the Easter Bunny's lap! So there you have it a spur of the moment decision that ended up fantastic! OH and Caleb's sister, Camryn, now has a blogger page too http://camryn-jayde-hlebiczki.blogspot.com/. Stop by when you can! God Bless you all!! God Bless Caleb and Camryn!!

Social Security Waiver and Verbalization

2011-04-13T13:28:00.005-04:00

Hello all!

Well I filled out the second appeal for the overpayment on Caleb's SSI. Now it's another waiting game. Let's just hope this time it is handled a little more appropriately and expeditiously.

Caleb has really been doing well talking lately. Even though it isn't sentences..IT'S WORDS! I have really been pushing him to talk here at home and his school aide told me this morning when I was dropping him off at school that he is saying more in the classroom. He's awesome! It's so neat. We will even be driving down the road and if he sees something he will yell the word. For those of you who know Apollo. There commercial was on this morning and I started singing it right in front of Caleb as it is, what I think, an easy jingle/song for him to learn and HE SANG IT(well the spelling of the word, with my help)! It was awesome!

Well just a quick little update!

Have a great day everyone!

Oh, found a cool quote today thought I would share:
'When the grass looks greener on the other side of the fence, it may be that they take better care of it there.' -Cecil Selig

Well have a fantastic day!!

God Bless you all!!

God Bless Caleb and Camryn!!

Eye Appointment

2011-04-11T13:44:00.003-04:00

Hello all, so the eye appointment at UPMC's Eye Center went well. So this is where we are for now: The doctors were awesome. They stayed in the room and answered all of our questions. They believe that since Caleb's draining is not excessive they do not want to do anything emergent as far as surgery. They are wondering, based upon what we have told them how his eyes drain if he has puncta and maybe they aren't were they typically should be and maybe his anatomy is different regarding the puncta too. This could be do to the cleft as well as the CHARGE syndrome. Caleb's craniofacial team wants to do another surgery on his nose as the cleft repair they did not believe was optimal. Therefore, the ocular team would like to have a half hour or so of the OR time to take a look at Caleb's eyes to see if they can find puncta. If so, they will put stints in, if not-well that's a whole other ball game. If he does not have them then they would create puncta if Caleb has the proper bone structure in his face to create the drainage system. If he doesn't have the proper bone structure, then they would put a tube in his eye later in life. They would not put this tube in now as it requires daily maintenance and other precautions (i.e. covering the corner of your eye when you sneeze). We all are still unsure if when Caleb pushes underneath his eye if this is related to his eye issues or behavioral. So the craniofacial team and the occular team will discuss the next move as far as the plan of attack for surgery.
However, we have just noticed that every once and while Caleb's eye seems to be having some 'lazy' characteristics to it. I called his Optometrist at Children's today to tell her what is going on and that I am concerned. I asked her if this could be related to the other eye issues and she doesn't think so but wouldn't be for sure until she sees him. So I then asked her if it isn't related what is it. She said some kiddos around this age develop a lazy eye and if needed can be treated with glasses or an eye patch. ay yai yai-I really don't see him leaving either on and feel bad for him that he would need either. He's got enough to contend with for Pete's sake!

On a positive note, the weather here yesterday was gorgeous and we spent the whole day outside on the deck. Brian and I were in awe at how much more Caleb did yesterday compared to what he did last summer. It was very awesome to see his progress. We had a great day as a family!

Well I am off to write an appeal for his SSI overpayment and to apply for the MRDD Waiver for Caleb.

Thanks for stopping by!

God Bless you all!!

God Bless Caleb and Camryn!!

Darn Winter Germs

2011-04-01T14:45:00.002-04:00

Sorry again all for the delay. I myself, have not been feeling well for a couple weeks and it made it hard for me to update. I am still a bit under the weather but I really need to give some updates.

So here we go..

SSI:
Well, it is not what I wanted but our appeal was denied but we are appealing the denial and the overpayment. So please pray that the appeal is approved! This also means that Caleb's medicaid card was not reinstated. Some states have a provisional medicaid card and I believe unfortunately WV is not one of them. So I have begun the application process to try to get Caleb MRDD Waiver, which is insurance based off of Caleb's disability. It is not the easiest application, but if granted it could really help us. Down side, the waiting list is one to two years. He could get approved a week or so after the application is complete, but the coverage would not be optimal.

Eyes:
Despite the insurance issues, we have to get Caleb's eyes checked. He pushes on his one eye constantly to help it drain and we just need to get him some relief. So we will be seeing the Oculoplastic and Reconstructive Eye Surgeon on Tuesday. I hope we can get him some help, unfortunately this will probably mean yet another surgery.

Bugs:
We have been fighting many bugs in the house this winter. GI bugs, respiratory bugs, RSV, pink eye, sinus infections, you name it. I am hoping the warm weather comes soon and gets rid of the nasty bugs in the air.

School:
Can I just say how smart Caleb is?!? HA HA spoken like a true mom right :)
He continues to do well in school. Following directions and participating more. Actually, today he doesn't have school and I have been able to really get him to talk today, so I walked around the house with him and pointed to things and said what they were and he repeated them! AH, what a great feeling. I even pointed to his sister and asked him if he knew her name and he said Amryn his version of Camryn! It was so cute! I hope he continues to talk more. This would be great! Caleb has also been able to tolerating sitting in a regular chair, here at home and at school. The chair at our dining room table is a little low, so we will have to modify it so our big boy can sit in a chair.

Article:
An article has been written about Caleb in a magazine. I am supposed to be getting a copy of the magazine in the mail. As soon as I do I will share for all of you to read!

I also, wanted to continue to thank you for the email I receive with suggestions on how to deal with SSI. Some of the feedback I have gotten was via the comments section, and I know some of you gave some personal info and that is why I did not post your comment.

Also, if any of you are on facebook, I do post updates on his facebook page to 'Caleb Hlebiczki is a Fighter'. So check us out there too. I am able to put photos on there easier than here as blogger is not that photo friendly for me!

Okay well I think Camryn is waking up from her nap.

Thank for stopping by and check back for updates!

God Bless you all!!

God Bless Caleb and Camryn!!

GI Bug

2011-02-23T11:08:00.002-05:00

Yuck, so the dreaded GI bug hit our house. Yuck. However, we aren't sure if Caybay got it or not. Let me explain. So Caleb was on Augmentin for his ear infection and last friday I gave it to him and he gagged/dry heaved about a half hour after I gave it to him and then slept for a bit, and then did not have an appetite at all until later that evening. Then Brian, Camryn, and I all started vommitting on Sunday. We orginially attributed Caleb's episode on Friday to his antibiotic, but now wonder if he had the GI bug. I pray that it was and that he has already gone through it and that is it. Poor kiddos, RSV and then the GI bug. This winter has been a rough one for many. I, as well as I know many of you out there, are praying for Spring to come soon. However, from the looks of the forecasts I think we have a long wait. BOO! Well I continue to pray that Friday's episode for Caybay was his episode of the GI Bug. I also pray for germ-free ending to this winter!

God Bless you all!!

God Bless Caleb and Camryn!!

One to Five

2011-02-16T13:59:00.002-05:00

So I am going to try to update this blog a lot more. The posts may be shorter but I am hoping that will allow me to post more often, when i have a moment or two during the day. So there may be multiple posts for a day ;).

So I picked up Caleb from school today ( I love saying that ) and he was as always all smiles. His teacher told me that once again he had a great day and he VERBALLY counted from one to five! He's amazing. I knew he could do it as I caught him once at home counting but when he noticed I was watching he stopped-little stinker. He also gave his Valentine's to his classmates today ;).
That's all for now!

God Bless you all!!

God Bless Caleb and Camryn!!

SSI and RSV

2011-02-16T11:17:00.002-05:00

Well Caleb seems to be feeling better and went back to school today! Camryn still feels pretty bad so I am hoping she feels better soon. Poor kiddos.

As far as the Waiver for SSI this os the latest. Just called to check on the waiver for Caleb's SSI I got a different rep & he went to ask my rep what was going on with the case as he told me the computer still showed no decision. Our rep had the gull to say she was waiting on more info from me. What a liar. I once again asked to speak with a supervisor and once again they weren't available. I am seriously so frustrated I am shaking. What can I do. I have contacted my senators and representatives and heard back from one of them. If anyone can offer any guidance I would appreciate it!

God Bless you all!!

God Bless Caleb and Camryn !!

RSV

2011-02-11T12:02:00.002-05:00

So Camryn now has the same virus Caleb has and their doctor believes it is RSV. This is the second yr Caleb didn't get the Synagis, shot that protects against RSV, shot. Even though he was immunosuppressed the insurance fought us every yr on covering the shot. Well here we are with him having a better immune system but now he and his Sis have RSV. Yes, I am a bit nervous as RSV is a scary bug for a healthy child. Please say a prayer for my babies.

God bless you all!!

God Bless Caleb and Camryn!!

SSI should be ashamed and embarassed

2011-02-10T15:43:00.002-05:00

So I called to check on the status of the Waiver for Caleb and couldn't of course get a hold of his rep, because she has already left for the day. I asked the rep who was on the phone if a letter had been mailed out regarding if the waiver was appealed or denied and guess what SURPRISE SURPRISE she hasn't mailed out a letter yet, which means she hasn't looked at the Waiver like she promised last week after she found it after she lost it. ARE YOU KIDDING ME! This is ridiculous. Of course, I asked to speak with a manager/supervisor and noone was available. Isn't that convenient. I am so mad right now I am shaking. How can they do this?!?!

God Bless you all!!

God Bless Caleb and Camryn!!

Insurance

2011-02-09T12:28:00.001-05:00

Getting ready to make some calls to see if we can get Caleb some insurance! Praying I can get him something that can cover all of his specialist needs. Wish me luck!

God Bless you all!!

God Bless Caleb and Camryn!!

SSI Update and Medical Fund Changes

2011-02-08T09:08:00.003-05:00

So we are still waiting on the decision on the SSI disability payments but it doesn't look promising. Not only will they not return my calls, but when I finally got through the other day the lady at the SSI office indicated she just found the Waiver application and would look at it in a couple days. That would be about three months since I filed it. Ridiculous. In addition, the 'overpayment' error was due to their error not ours and that is what I stated in the Waiver application. What shocks me is that the local office, who made the mistake, decides on the Waiver. How is that not biased?! In addition, when I talked to her last week she was already asking me how much we could afford to pay back every month, like she had already made her decision without looking at the Waiver. I am throughly disgusted. I told her I can't 'afford' anything and why should I pay something back when they made the error. I am getting so upset typing this, makes my blood boil. So I am expecting a letter in the mail telling us we owe them money. I asked her if she could call me with her decision and she said no she would mail me a letter. I guess it is easier to deny someone via mail than in person or over the phone. Classy right?!?

Anyway, on a happier note. We decided this past weekend that there was an empty spot in our lives and

we went to the pound and rescued this sweet boxer/lab mix named Izzy. She is awesome. Caleb and her are already buddies!

Caleb is sick again, we are heading to the doctor this afternoon. I am not sure if his ear infection is getting worse or if he has another infection on top of that. Poor kiddo.

Also, we found out that Caleb was student of the month at his schoool. How awesome is that?!?! So proud of him. He is such an inspiration.

Oh also, we had to change the location of the Medical Fund. You can now click on the 'Donate' paypal link on the side of the page to make donations to the Caleb Hlebiczk Medical Fund.

Well I have to get going. Caleb isn't feeling so hot.

God Bless you all!!

God Bless Caleb and Camryn!!

SSI Update

2011-01-27T11:39:00.002-05:00

I contacted our local Congressmen again and I heard back from Senator Manchin's offiice and they are going to try to help. I signed the release so they can inquire about the Waiver since the local office won't return my calls and the national number keeps giving me the run around. I am really hoping he can help. He always tried to help when he was Governor and now is helping as Senator. Thank you Senator Manchin, we appreciate any help you may be able to provide. I will update more when I hear something, just please pray that they don't expect us to pay two years worth of disability payments back to them and they find out how negligent the local office is!

God Bless you all!!

God Bless Caleb and Camryn!!

Disgusted

2011-01-25T10:37:00.003-05:00

So as you all are aware I a appealed the 'overpayment' on Caleb's SSI payments. Well the overpayment was filed on November 2nd and I have got nothing but the run-around from our local office in regards to the Waiver. Also since Caleb's SSI payments are temporarily stopped he has lost his Medicaid insurance which in turn prevents Caleb seeing the Oculoplastic Surgeon regarding his eyes. His Medicaid could be reinstated if the local SSI office would fax, like they told me they were going to do twice, a letter to the Medicaid office stating the Waiver is in process. But why should I count on them to do their jobs?!? It is ridiculous the incorrect information I have been given by them, along with the promises phone call returns. I have contacted the national number when the local office two weeks ago told me they couldn't find the Waiver, however the national number told me they found it right away. The national number then told me they would contact the local office immediately and in that email would tell them to contact me ASAP as this was emergent. Guess what, no phone call back. The national number told me today to go to another local office. I then said 'so since our local office can't get things done I will have to drive my disabled child to another office further away so his case can be taken care of?!?' She said 'yes, and contact your congressman' I think that is ridiculous that the national number needs to suggest that in order for things to be addressed. I have had to contact our Governor and congressmen in the past for things to be taken care of. Absolutely ridiculous. The Waiver appeal has to be decided upon in 90 days. Well lets see, I filed it on November 2nd and as of last week they couldn't find it and today the national number told me there is no progress on the appeal. I wonder if one of the local office personnel had a disabled child would they be sitting on their hands like this?!? What a bunch of incompetent idiots. Sorry for the rambling, I am just so upset and disgusted!

Please pray for Caleb that this gets resolved, so he can see his surgeon and get his eyes fixed and to continue to receive his SSI disability payments and get his insurance reinstated.

God Bless you all!!

God Bless Caleb and Camryn!!

Happy New Year

2011-01-19T17:18:00.003-05:00

Sorry all just need to breathe for a little bit and take a break from updating as we have had a rough end to 2010 and new beginning to 2011. Our dog, as stated in the previous post passed away before Christmas and it just has been rough since then. We have had a sewer line issue in our basement (which then flooded us) I have had two sick kiddos for about a week an a half, and Caleb had his g-tube closure surgery and was supposed to get eye stints put in his eyes-which brings me to my next discussion.
So Caleb finally got the hole closed in his stomach that was left from his feeding tube. At the same time they were going to put stints in his eyes to unblock his tear ducts. BUT his surgeon came out after her part and said she has never seen it before but Caleb does not have the parts in the eye to put the stints in. If you pull your bottom lid away slightly from your eye and look towards the inner corner you will see a small hole. That is the puncta. There also one in the top lash line also. So you have a total of four. Well the bottom puncta mainly drain your eye were the top one does a small percentage. Caleb has only 1 puncta out of four so that is why his eye is contantly watering. So Caleb now has to see an Oculoplastic surgeon who will evaluate what is going on. His current doctor seems to believe that they will probably have to create the puncta holes and then create a drainage system. So we will be seeing that doctor next Friday. In addition, Caleb had a horrible time with the anesthesia this surgery he was really sick. They actually kept the outpatient recovery area open for him. Around 7 that evening they called the anesthesiologist and told them that he was very nauseous but was not actually vomiting. In addition he was very upset. While he was in recovery they gave him a lot of fluids so the doctors then asked us if we felt comfortable taking him home. It is kind of odd that we felt more comfortable taking him home then keeping him there. We know what to do and we know what warning signs of concern to look for. I was happy though that they asked us to make the call as to whether to have him admitted or not. We got him in the car and he slept the whole ride home, about an hour and fifteen minutes. For a kiddo that never naps we knew he felt crummy but figured he needed to sleep it off. When we got home my parents were babysitting Camryn (who I am so proud of because she ate for her grandparents) and when Caleb saw them he smiled. He slept well that night and the nausea seemed to be gone the next morning. But the next week and a half was very nervewracking as his incision opened up and we were concerned about infection and I am happy to report that in the last few days it has finally scabbed up. Phew! Very nervewracking. He has been having some GI issues since the closure, that we have been trying to manage here along with some medicines that will hopefully help.
So next step is to see the oculoplastic surgeon and then coordinate with craniofacial to see if they want to do his nose repair at the same time. Also, pray that his GI issues resolves and the kids get rid of these nasty colds.
So that is where we are for now. Sorry again for the delay it has been REALLY hectic with everything going on. I promise to be better at updating this year. I thank you all for following and checking in and I wish you all a fantastic New Year!

God Bless you all!!

God Bless Caleb and Camryn!!
So he

Sweet Saba

2010-12-14T11:56:00.003-05:00

Our sweet dog, Saba, passed away early this morning here at home. She had been having problems the past few months but did not seem to be in pain until lastnight as she was not able to walk really well at all. We were going to take her to the vet this morning to put her down, but Saba as courageous as she always was, decided to do it on her own terms. We found her early this morning in our hallway. Saba was our first child. She was an amazing dog, very loyal and wonderful and protective of the family. We loved her very much. We will miss you so much Saba we love you. Rest in peace Saba dog! We love you pretty girl!

Just this side of heaven is a place called Rainbow Bridge.
When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge.
There are meadows and hills for all of our special friends so they can run and play together.
There is plenty of food, water and sunshine, and our friends are warm and comfortable.
All the animals that had been ill and old are restored to health and vigor.
Those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind.
They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent.
His eager body quivers.
Suddenly he begins to run from the group, flying over the green
grass, his legs carrying him faster and faster.
You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.
Then you cross Rainbow Bridge together....

See at Rainbow Bridge someday Saba dog. Thank you for being such a wonderful dog. I love you!

God Bless Saba!!

God Bless you all!!

God Bless Caleb and Camryn!!

A lot Going on and A family in Need UPDATED

2010-12-13T10:30:00.004-05:00

Hello all, well I did have some updates but I think I really need to tell you about a local family in need. I went to school with the father of this family and he is a wonderful man and his family really needs our help. I know all of you that read this blog are wonderful people so please spread the word about the loss this family has suffered.
Jason Koegler and his family (wife Sarah and two sons Will and Campbell) house burned down lastnight and they lost pretty much everything including their Christmas gifts. A website has been set up where they are collecting clothes and toys for the family. I am not sure on the sizes for the parents but I do know the boys wear 4T and 5T and size 12 and 10 shoes. Here is the website were they will be adding more info. But I do know that like some of you, if you live far away they are accepting monetary gifts too. Please visit this website and help this family.
http://koeglerfund.wordpress.com/
God Bless the Koegler Family!!
UPDATE
So the family needs gift cards more than anything. Places like Old Navy, Target, and Walmart. Please follow this link to send gift cards. http://koeglerfund.com/
God Bless you all!!

God Bless Caleb and Camryn!!

Still Waiting

2010-12-01T15:08:00.002-05:00

Well we are still waiting on a decision to our appeal for Caleb's social security disability payments. I have called several times, and they do not have any updates regarding the decision.

Caleb continues to do well in school and with his therapists. He is talking and walking more. I am hoping he continues to improve in both areas! If we could really get him talking OR signing more that would be great. I have been really urging him to talk or sign more and he is picking it up very quickly, and sometimes uses signs or words on his own without prompting. He has also started back to his outpatient therapy as well and his therapists have noticed a difference in him since his start of school. They think he seems like a different kiddo, music to my ears that they think he is growing socially.

He is going to need another surgery, I think this around surgery number thirty something. The hole left from his g-tube did not heal so he is going to require surgery to close it. Caleb has always had the hardest time recovering from stomach surgeries, he even recovered from his open heart better than when his t-tube was placed. I am really hoping that this surgery recovery is not hard on him. I am so nervous about another surgery. I don't understand, now looking back on it, how we mentally handled Caleb have so many surgeries close together. He is so tough and I am so proud of him. We have also found out that his tear duct in his right eye is blocked and will need a stint placed surgically after the duct is blown out. After three months they will remove the stint in the office, YIKES. So the surgeons have been so wonderful to agree to share the OR to get these to surgeries done under one GA (general anesthesia) exposure. Thank goodness, he has had so many surgeries (somewhere in the thirties) that one less exposure to general anesthesia is good!

Caleb is really beginning to try to interact with his sister, Camryn. He shows her his toys and I even got him to give her a kiss. We have been blessed with two wonderful children.

I also have to say how proud of my husband, Brian, I am. He has worked hard at AT&T for the last couple years and recently interviewed for a sales position with Lamar and was hired. We are so proud of you Brian! Congratulations.

Also, a special prayer for a friend of ours who passed away three years ago from Leukemia. Samantha Welch was a strong and beautiful 17 year old that fought so hard. We met her and her mother while we were at Duke Hospital for Caleb's transplant. We became very close with the both of them. Samantha always drew pictures for Caleb that we hung all over his room, and when she would do her 'laps' around the floor. Should would always knock on the door and talk through the glass door to Caybay as she couldn't come into his room because of his isolation issues. We visited her room often though and became very close with her and her momma Faith. We all believe Sam is one of Caleb's guardian angels. Sam we love you and miss you so very much. Faith we think of you often and miss you too! God Bless you Sam and Faith!

Thank you all for stopping by and checking in on us!

God Bless you all!!

God Bless Caleb and Camryn!!

Pumpkin Patch (UPDATED)

2010-10-29T14:47:00.009-04:00

Hi all, I hope everyone is enjoying this month's festivities. We were able to go to a pumpkin patch recently,first time for Caleb. We had to move quick though as a storm was moving in.

Caleb started smiling when he saw all the pumpkins. He eventually walked around a little bit holding my hand and he did great. We picked out two pumpkins, which we later carved. He was in shock at that whole process too. He was so cute watching Brian and I when we carved the pumpkins.

Well, Caleb is still fighting his nasty cold. He is on another round of antibiotics. Poor guy. Hoping he can shake this cold soon! He is supposed to get his next round of shots/immunizations next week, but I am not sure if he will if he is still sick!

Caleb got to dress up for school for Halloween this year, he is spiderman! He won't wear the hood as Caleb is really averted to any type of hat, which will make dressing this winter difficult. But he kept his costume on all day and he looked very cute! I only got pictures of him at school with my phone, so I will take more Halloween night with my camera to post on the blog. He looks so cute as Spidey!

A couple of our friends are going trick or treating at our local zoo tonight. I would love to take Caleb but I am not sure if it is the best idea. One, he hates to wear hats and unless I can figure out some way to keep a hat on his head (even the ones that have the Velcro strap he manages to take off) it is a definite 'no go' as he has to stay warm especially with still having his cold. Two, I am not sure how he will react to that many people and the 'fright' aspect. So it looks like I am leaning towards a 'no go' as of right now. :(

As far as social security, I have contacted many local politicians and only two responded and were not a great deal of help. So needless to say I don't feel a strong urge to hit the polls this Tuesday to vote. Such a change for me as I used to be so big into politics. Anyway, we are filling out the paperwork to file the appeal. Praying they approve our appeal and don't make us pay the money back.

UPDATE: Got a letter of response in the mail today from Senator Rockefeller in regards to Caleb's SSI. I have to sign a form to allow him to look at the info, per the Privacy Act. WOOHOO I hope he can help us! He has helped or tried to help in any way every time I have asked! Thank you Senator Rockefeller!

I also wanted to say a quick thank you. I often wonder if I thank everyone enough. You all have been so wonderful to our family through the past four years. We are truly grateful for the emotional and physical support you all have provided for our family. It has meant so much and continues to mean so much to us. I thank you all for understanding our situation and our special circumstances. Thank you so much!

Well all, I have an itty bit waking up wanting to be fed. I will post Halloween pics as soon as I can!

God Bless you all!!

God Bless Caleb and Camryn!!

One of those tearful days

2010-10-21T14:16:00.002-04:00

So I was going through the mail and received a letter from our wonderful government regarding Caleb's disability payments. The letter indicated that they want to be repaid back all of Caleb's monthly disability payments back to October '08 yes that is right of 2008. So I called the national number and the only explanation the lady could give me there was that we owe the amount specified in the letter, no explanation of why. So then I called our local office and the explanation I got was they just got through all of our information we supplied which makes no sense at all. You supply information every couple months along with pay stubs. BUT NOW TWO YEARS LATER they want everything back. What is wrong with this scenario? It takes them that long to go through everything? Are you kidding me? Nonetheless, I FULL well know that the months that we submitted pay stubs for Caleb should have gotten disability payments based upon the criteria set by our wonderful government. So the lady at the local office was of no help, all I can do is file an appeal while our government wants a lot of money back. I am disgusted. I am disgusted at the fact that we all know and have seen individuals out there that totally abuse the system and get help when they shouldn't and then there is an individual such as Caleb, who was initially told by the SSI 'he wasn't disabled enough' to get disability, who finally was approved for disability but now they want all their money back. Our government is ridiculous. I have been in the past a pretty active participant in supporting our local politicians and government, why? so they can do stuff like this to my son? I will not vote or partake in any elections anymore. They are all corrupt. They worry about themselves and not about how THE SYSTEM is failing people such as my son. I am sorry to have such a bitter post. But why do I continually have to fight with our government to get him disability. It took over a year to get him a state disability medical card. It shouldn't be this hard. Our government is getting worse and worse by the day. How can they do this?!?

Please say a prayer that Caleb get the help he deserves!

God Bless you all!!

God Bless Caleb and Camryn!!

Another infection?

2010-10-20T14:57:00.002-04:00

So Caleb has had about three colds since the start of the school year. Unfortunately, this last one seems like it is a little harder for him to kick. This cold started about a couple weeks ago after we had a trip to the ER after he had a reaction to a vaccine. Which, I would love to note is the first ER trip that did not result in a life-flight! How about that for a milestone?!? Back to the cold..we were hoping to attend a Family Fun Night this evening at Caleb's school as Bri and I were so excited to attend something like this and see how Caleb plays with other kiddos and just to be able to go to something like that is a big deal to us as not to long ago we weren't sure we would be able to do something like this due to Caleb's medical condition. Well needless to say, Caleb has been running a fever off and on and we just got back from the hospital to get some chest x-rays and we will see the doctor this evening to try to figure out what is causing the fevers (as he still can't tell us where he doesn't feel well) and to try to get him some help to get rid of this cold. Looks like we will have to wait until the next family fun night.

Also, Caleb's school pictures came back. His teacher was so excited to show me the picture when I dropped Caleb off at school on Monday. I couldn't believe my eyes the pictures were perfect.

He didn't hide his face and he smiled, of course I did hear from a little birdie that his teacher and aide worked very hard to get him to smile like he did and not to hide. Thanks ladies! There is still a little evidence of his black eye that he got from a fall in school, but we don't mind. He looks great! So I held it together and then when I got back to the car from dropping him off I started crying. I remember praying for things such as this when Caleb was so sick in the hospital. Thank you Caleb for fighting so hard when you were sick. We love you and are so proud of all of your accomplishments. Keep it up lil man! We love you!

Thanks for checking in on Caybay!

God Bless you all!!

God Bless Caleb and Camryn!!

Bumps and Bruises

2010-10-11T14:03:00.002-04:00

So school is going well, however, since Caleb is new at walking he takes things too fast and has fallen a couple times in school. He actually gave himself a black eye when he fell and cracked his temple on a chair. His teacher is wondering if he would be safer wearing a helmet while in school so he can be independent yet safe. We okayed the idea so we are looking into helmets. I also asked the school and his physical therapist if she could go evaluate him at school to see if she could make any suggestions. She will be visiting his classroom this week to see if maybe some sort of brace could help him be more stable.

Caleb has been very adamant at not wanting to wear his hearing aid and we aren't sure why. We are taking him to his audiologist this week to get a program put on his hearing aid that will allow him to hook up to the FM system at school.
Here is a little bit about how an FM system works:
Personal frequency modulation (FM) systems are like miniature radio stations operating on special frequencies assigned by the Federal Communications Commission. The personal FM system consists of a transmitter microphone used by the speaker and a receiver used by the listener. The receiver transmits the sound to your hearing aid either through direct audio input or through a looped cord worn around the listener's neck.

Personal FM systems are useful in a variety of situations such as listening to a travel guide or book review, in a classroom lecture, in a restaurant, in a sales meeting, or in a nursing homes or senior center.

FM systems are also used in theaters, places of worship, museums, public meeting places, corporate conference rooms, convention centers, and other large areas for gathering. In this situation, the microphone/transmitter is built into the overall sound system. You are provided with an FM receiver that can connect to your hearing aid (or to a headset if you don't wear a hearing aid)

I am hoping he will get over this aversion to the hearing aid, as I think the FM system for him would be great. Crossing our fingers that he gets used to his hearing aid again very soon. I have also asked the audiologist if we can fit Caleb for a piece that goes on the hearing aid to help it not flop on his earlobe as this is the earlobe that folds over a little bit.

Well I just wanted to post a quick update to let you know where we are!

God Bless you all!!

God Bless Caleb and Camryn!!

Where to Begin..

2010-09-26T12:19:00.007-04:00

Okay so once again sorry for the delay between posts but we have had A LOT going on!

The last trimester of the pregnancy was really rough and pretty much per docs orders rendered me on a low activity level. So I was very busy just doing stuff around the house to keep us all sane and took a break from the blog! Thank you all for the emails though and concern about Caleb. I am back now and will update more regularly!

So where to begin..

Well Mr. Caleb started school and he is doing awesome. It was very hard for me the first day to drop him off but it was so exciting in the next breath. We were originally taking Caleb in daily in his stroller. However, the last couple days Bri or I walk him in holding his hand. Last Thursday, we were expecting him to be brought out to the car using his stroller but to our amazement he was walking out holding his teacher's hand. This is a huge step for Caleb as he usually only walks holding Brian's or my hand. So great to see him walking out with all his classmates. He is also saying some words in the classroom and interacting with his classmates. This is also a big step for Caleb as he usually has to take a while before talking around others. He did catch a cold his third day in which he brought home and shared with the whole family. I am sure this is the first of many bugs he will bring home and share with us, but I am happy to say that it is nice that we don't have to be so scared when he got sick. Of course there are still some bugs out there that we have to watch out for, i.e. chicken pox, but it is nice that not EVERY bug is so scary! Another awesome thing is his teacher gets so excited about the smallest things like we do so it is so great when we pick him up and she tells us all about his exciting developments and progress. He even said her name one day in class which tickled her pink. It is so great to see that they are so invested in his development too! He is amazing isn't he?!?!

Caleb is also now a big brother! Camryn Jayde Hlebiczki was born on August 24th at 8:54 a.m., 19.5 inches long, and 7 lbs. 5 oz. She came out screaming. She is beautiful and we are so happy she is here! She does have colic so it is making for some long nights, but we are all slowly adjusting. Caleb will make sure to let us know when she is crying. He has only touched her a few times, but is very curious about her as he watches her when we are holding her or when she is sleeping.

So this is a pretty short update, but I wanted to let you all know that we are okay and I will be updating more regularly now that we are trying to get into a routine.

God Bless you all!!

God Bless Caleb & Camryn!!

Happy Birthday my Wonderful Four Year Old

2010-07-12T16:11:00.003-04:00

It is hard to believe that Caleb is four years old today! Wow, my baby is four! I remember praying that he would make it to his first birthday! Wow!

We had a party this past weekend with family and it was so great for him to be around his whole family and cousins again. Just watching him during his birthday celebration was amazing. I can't even put into words what that day meant! He is such a strong little boy. We are so proud of you Caleb, keep up the great work!

Brian and I got him a fish tank for his birthday, which he is infatuated with. He falls asleep watching his fish. He even will go up to his room after coming downstairs for the day to go check on his fish. Too cute! He also received MANY other gifts for his bday and was not scared of one. Which is a huge step in regards to his sensory aversions. Before, it could take Caleb's days, weeks, maybe never, to warm up to a toy that made noises or moved.

Brian and I are amazed at how much he has seem to grown in the last couple of weeks. He is so amazing! He is getting more comfortable with his therapists also.

A huge development for Caleb is it looks like he will be going to pre-school in the fall. We are so excited for him. He will be in a classroom with 10 other differently-abled kiddos, so the class won't be too big. He will also get therapy while he is at school too. I think this will be so great for him. I definitely think it is going to be harder on me than on him. I am a mess thinking about being away from him. I start to tear up...but don't get me wrong I definitely want him to do this it is just going to be hard. I am so excited for him!

Well, I will post birthday pictures as soon as I get some uploaded. A lot are on my phone too, so it could take me a few days. Again, sorry for the delay in posts, we have been a little busy with summer activities and getting ready for baby girl.

Thank you all for checking in!!

God Bless you all!!

God Bless Caleb!!

Beach Vacation

2010-06-06T12:33:00.002-04:00

Wow, did time fly. We had a great time. Caleb did great traveling! It was really windy the first two days on the beach and Caleb didn't like it, but he got used to as the week went on. There was an indoor pool at the condo, which Caleb did great in. One day he even let us put floaties on him (huge step for his sensory issues) and he did his version of a doggie paddle while we held him. He did great. I am hoping we can get him to doggie paddle on his own by the end of this summer. He still was not a big fan of the sand or the ocean. He eventually did play with some shapes in the sand, but he remained on the blanket and would not sit in the sand. We carried him down to the water too a couple times, but he didn't really want anything to do with it. However, he did tolerate sitting on the blanket on the beach A LOT better this year, so he did make progress. We were able to go out more too this vacation and do more dinners out and shopping. We had so much fun, to live normal and interact with people was such a great feeling! We had so much fun and it was over so quickly. I really wish we lived closer to the beach! Well I have put together a quick montage of some pictures from the beach (I created the pictures to have captions, but some of the features of the software I use aren't working, not sure why), enjoy.

Make photo slide shows at www.OneTrueMedia.com

God Bless you all!!

God Bless Caleb!!

Try to Moderate

2010-05-14T09:49:00.002-04:00

Well all, as I said, the limit on invites was a 100 and the requests went well over that. So I am NOT going to not invite people due to the limited space as you all and your support helped our family through such difficult times. I will never be able to thank all of you enough for that. So I am gonna to try, for now, to block anyone trying to make anonymous or inappropriate posts. Maybe that will control it for now! Thanks for the suggestions!

As far as Caleb's cold, he didn't wake up this morning, coughing like he was barking like a dog so that was great. He still woke up coughing, but the cough didn't sound as nasty! Hopefully the meds and his immune system are already working! I am so proud of him as he has made another small achievement. Caleb would always fight me when it was time for nebulizer treatments and the last two treatments he has sat calmly and put the nebulizer in his mouth and breathed the medicine in. So proud of him!

His g-tube hole has looked the same the last couple days. I am hoping it isn't done trying to close and will get smaller. We shall see. We took the g-tube out on March 30th, I was really hoping that it would be closed by now. I don't mind changing the bandage, to prevent the leaking, several times a day. But, I really don't want him to have that surgery. We are going to the beach soon, and I am gonna have to cover it when we go down on the beach so sand doesn't get in it. I am thinking about doing the same thing that I used to do with his g-tube and IV and put that Press -N-Seal on it, but I am not sure if when draining if it will stick. I think I may have to go bug some people at the local hospital for some Tegaderms (what you put on IV's) so we can use that when around the sand. Gotta get a plan together for that as far as that is concerned.

So as I mentioned, we are going to the beach again. This will be Caleb's last beach trip as an only child! So crazy to think of it that way. Anyway, we are driving as we did last year. But this year I will have less medical stuff, a lot less, to pack. So hopefully we can all fit more comfortably into the car this year. I had to start packing a couple weeks in advance of our beach trip last year to account for all the medical stuff. This year I did not have to start packing so early.

Talking: Caleb continues to mimic well. But when in public or around others he either doesn't talk at all or says few words. So I am hoping that the more we get him out in public the more he will open up and start talking and becoming more verbal for others.

Caleb has just started walking short distances again, as he took a break when he wasn't feeling too well. However, he has not wanted to go near the steps since the day I took that video from a couple posts back. I am hoping he will try again, and is not regressing as he has done in the past with walking.

We also had to take a break from therapy this week, as this is actually the first day that I think Caleb seems better. So next week he will return to therapy and they will get a week off for vacation.

Well all, I must start getting some stuff together for the beach! So exciting. Check back for updates!

Thanks again for checking in on our lil' man!

God Bless you all!!

God Bless Caleb!!

Decisions....Decisions...

2010-05-13T11:21:00.004-04:00

So the response to have everyone's emails to get them on the 'invite' list to make Caleb's blog private has been so so so heartwarming. Thank you again for wanting to check in on Caleb and his continued achievements. The limit of invities I can send out is 100, and I am going to hit that limit. SO.........now what to do, what to do.....I am NOT going to not invite anyone due to lack of space. So now I have to consider whether to move his blog to a site, such as WordPress and pay a monthly fee for a host site so it can be password protected OR stay here and just moderate the comments. Oh what to do. Any suggestions would be appreciated!

Also, on the cold front. Caleb has been feeling pretty crummy this week. We have kept the fever away (knock on wood), but this morning the congestion is moving and he has one heck of a cough. I knew even before I called the doctor that he was going to need an antibiotic and breathing treatments and sure enough, that is what the doctor ordered. So hopefully the meds in combo with his immune system (come on immune system) will fight off this bug.

Caleb is schedule for his next round of immunizations on Monday, but not sure if he will be getting those with this cold or not, we shall see. Also, the blood draw to check Caleb's calcium is scheduled for the 20th. If the results come back fine, Caleb won't need the supplement of Calcium and Vitamin D to control his hypoparathyroid and hypocalcemia. How exciting is that?

We are continuing to watch that g-tube. I really hope and pray that hole closes up so he doesn't need surgery. That surgery would be evasive and would require him to get a nasal feeding tube for 24 hrs, which is something that could possibly hurt all his strides at getting over his oral aversions. So, come on g-tube hole close already!

Well, I am off to get meds from the store and to go pick up nebulizer tubing. I hope everyone has a great day!

God Bless you all!!

God Bless Caleb!!

A Little Privacy Please

2010-05-12T09:00:00.002-04:00

So I have decided to make this blog private. It is the right thing to do. I actually have been wanting to do this for about a year or so. So I am gonna try it. Unfortunately, Blogger doesn't give you the option of making a screename and password when arriving at the blog, like other sites like WordPress does. Blogger allows you to 'invite' people to view the blog. To invite people, I will need your email address and then from their you will receive an invite email from Blogger to join Caleb's blog. So if you want to continue to view Caleb's blog please send me your email to, sarah_hlebiczki@comcast.net. I will be setting this up very soon! Thanks everyone!

Have a great day!

God Bless you all!!

God Bless Caleb!!

Movin' and a Groovin'

2010-05-11T10:34:00.006-04:00

So I have some exciting video to post of Caleb. But before I do, a couple quick updates.

Caleb has started going to the new place for therapy and we love it. The therapists are great! So knowledgeable. Caleb is still adjusting but I know he will get used to it.

We are still trying to let Caleb's hole from his g-tube heal on its own. It is smaller and still leaking, so we are praying it will continue to get small so he won't have to have surgery as it is a pretty extensive surgery.

Also, we have been weaning Caleb off of his Calcium and Vitamin D meds that he has been on since birth to control his Hypoparathyroid. His calcium levels at birth were very low and he almost had a life threatening seizure due to the low levels. However, some kiddos with DiGeorge will outgrow the need for oral meds and may be able to maintain the levels with their diet. So this is what we are trying. He has had numerous blood draws, to check his levels periodically through the wean and he is now off the meds. We have one more blood draw (to see if the levels are staying within the normal range) and if that comes back normal, then Caleb will be on only 2 meds, a vitamin andprevacid, a day. Hard to believe that the med list is so short now. He came home on so many meds. The picture below is the amount of meds that Caleb initially came home on (not all are pictured as some were refrigerated meds). So you can understand how impressed we are that he could possibly be down to two meds a day.

Caleb unfortunately has another cold. He had a fever lastnight and we are hoping this bug doesn't get him down and that his immune system fights it off. Go IMMUNE SYSTEM!

Caleb now understands that he is going to be a big brother, but I don't think he is completely thrilled about the idea. He does point to my belly and say 'baby' but then shortly thereafter says 'bye bye baby' and covers my belly. I know it will take some time for him to adjust and I know he will be an AWESOME big brother. Baby girl, is doing great. She is a wild child, moving around often. We are starting to get the nursery ready, so exciting. We are trying to keep Caleb as involved in the process too to help him adjust to the upcoming arrival of his sister!

Well as promised here is the amazing video. He literally did both of these within 48 hours of one another and out of nowhere. Just like always, when Caleb makes up his mind to do something he is gonna do it!

Aren't those awesome!

Also, on a side note...I am thinking about making Caleb's blog more private. So not just anyone out there on the world wide web can log on to his blog. If I do, it will probably be controlled by password or by email. Either way, I will let you all know before I do anything, so you can access the blog!

Thank you all for checking in!

God Bless you all!!

God Bless Caleb!!

Another Post Op Update

2010-04-14T14:29:00.003-04:00

Hi everyone! Caleb seems to be doing better! That first night after surgery was definitely rough. Poor guy! We have found out that sometimes if you have two types of anesthesia, like he did, it can make you sick. He definitely had a hard time recovering.

His g-tube site is still trying to heal. I wish that hole would close on it's own. The last thing all of us wants is ANOTHER surgery. So please keep praying that it heals on its own.

Great news, Caleb has started to hold his sippy cup and take drinks! We have been working on this for awhile now and two nights ago he decided to do it! So proud of him. He has also been trying to take more steps on his own. Praying this is a sign that we may have a walker soon! He also has been trying to mimic Bri and I now when we say not only words but FULL SENTENCES. He is growing up! So proud of my baby! Caleb and I also went to the grocery store on our own the other day. We are really trying to carefully ease up on the isolation restrictions. The past times we have gone grocery shopping with Bri, but Caleb and I did it on our own! Who knew grocery shopping would be so much fun!

Thanks for checking in! Please pray that g-tube hole closes on its own.

God Bless you all!!

God Bless Caleb!!

Surgery Update

2010-04-08T11:06:00.003-04:00

Well Caleb had his surgery yesterday. We got up at 5 and were out of the house at 6. We arrived at Children's Hospital right at 7:30. A couple minutes before we reached Children's Caleb was asking for milk. This is the first time we have had to deal with a child that drinks and eats pre-op. So it was very difficult for him to understand why he couldn't have any milk. But we and he dealt with it well. Once we got back in the pre-op area, poor Caleb knew all too well where we were. He got very upset. My heart broke, as I realize that now that he is older he knows what is to come. We got him calmed down in the pre-op area and watched some cartoons while we waited. I am not sure if the wait wasn't long or if my nerves were so bad that I didn't notice how fast time was passing. But soon they were ready to take him to the OR. I had such a hard time also in the pre-op area. I know some would think that the amount of surgeries Caleb has had up to this point, which would be probably in the 30's, that one would get 'more used' to the routine. But it is quite the opposite. They do give you the option of going into the OR with your child as they put them under the General Anesthesia, but I did that two times before and it is very hard to see. So I carried Caleb the whole way from the pre-op room, down the hall, until the docs said that was as far as we could go with him. As I went to put Caleb back in the crib, it broke my heart as he cried and said 'nana' and reached out for me and Brian. That is the first time he also 'verbalized' how upset he was. It doesn't get easier. His surgery was finally done and soon we were able to see him. We went back and he was curled up in a ball in his crib. The nurse asked Bri and I if he was a cuddler and we said yes, and she said she could tell by how he was sleeping in the ball in the side of the crib. I immediately picked my lil man up. Once again, trying to figure out where all the tubes and wires were to make sure I didn't pull anything. I can't believe he had tubes and wires on him constantly and how moving him around with all these things attached to him at one time for so long was second nature. Nevertheless, I scooped up my lil man and held him. Then, I handed him off to Bri so he could hold him also. Once he began to wake up he was very groggy. It took him about an hour and a half to come out of the anesthesia and drink enough to come home. On the ride home, he didn't seem as 'unaffected' by the surgery as he has with some of his previous surgeries. Once we got him home, he curled right up on the couch and passed out. He slept for about 2 hours and then woke up and was very cranky and obviously in some pain. We gave him some pain meds and he then passed back out. We also realized this was about the time that the epidural they gave him for pain was probably wearing off. He then slept for about two more hours, waking up in between crying. At about 8 o'clock he tried drinking some watered down milk and it went well, but an hour later he started gagging like he was going to be sick. This is also a new thing for us and him as he always had the g-tube and if he was sick we just vented that to prevent the vomiting. So he cuddled with his daddy while he was sick to his tummy and the nausea seemed to subside (as he can't actually tell us, but we could tell from his demeanor) as he started to move around a little more. After sharing some jello with his dad we got Caleb into bed. He slept through the night and seem to be doing better this morning.
I cannot thank everyone enough for all the messages on facebook and texts regarding Caleb and all the prayers for him and our family. You all have been so supportive to all of us throughout this and we cannot thank you enough. You all are amazing people and friends. Thank you for being such a wonderful support system for our family!

God Bless you all!!

God Bless Caleb!!

Therapy Evaluations and G-tube update

2010-04-03T09:23:00.002-04:00

So we got to take Caleb to two out of three of his therapy evaluations at the new clinic the other day. It was nice that Brian was off and was able to go with us. We were so very impressed with the facility and the therapists, they were amazing. Brian and I felt so good after we left there. It would have been nice if we could have done it sooner, but Caleb's immune system at that time wouldn't have allowed it! WE are so excited! They have amazing equipment that I hope and pray will help Caleb with his delays.

One of the biggest goals is to get Caleb walking. Some other goals: communication (i.e. letting us know what he would like to eat, letting us know if he doesn't feels well by signing or saying something like 'my tummy hurts', letting us know what he would like to do, etc) brushing his teeth and spitting it out when he's done, dressing himself, going up and down stairs, these are just a few but some of the bigger goals. He can do it!

Also, his g-tube site, continues to leak. We are changing the dressing constantly along with outfits. It has been nice that the weather has been so warm because due to all the leaking, I let him go around the house in his diaper and sometimes a shirt. He loves it, he hates wearing clothes. I have called the docs again regarding trying to get it surgically closed next week when they fix his hernia and unfortunately they put me through to a nurse who has no idea of how many surgeries Caleb has been through already and how if we could group these too surgeries together it would be better for him. So frustrating! But I am praying that it will close on its own before then and he won't need it to be surgically closed.

Well that is all the updates for now. Gonna color some eggs today. Still trying to figure out how to approach the Easter egg hunt with Caleb as I am not sure he will understand. We will see!

Happy Easter Everyone!

God Bless you all!!

God Bless Caleb!!

Big Boy Room and More Changes

2010-03-31T12:06:00.008-04:00

So Caleb finally got all his big boy furniture in his room! I couldn't believe when I walked in how grown up his room looked, no evidence of a baby anymore :( But it is good that he is growing and is in a big boy room

First night sleeping in his big boy bed.

He loves waking up in the morning and seeing himself in this mirror from his bed.

One fixture that we are so glad that is not in the room anymore is his IV pole. I can't believe at one time we had three pumps (two for his IV and one for his feeding tube) on the IV all the time and that he was at one time constantly hooked up to those pumps! So his newest accomplishment is that he has been drinking and eating enough by mouth that he is sustaining his weight so he doesn't need supplemented by the feeding tube at night anymore.

In relation to the feeding tube, he has also been taking his meds by mouth. He still resists when he sees me coming with the syringes at med time, but he is doing well. So since Caleb is taking his meds and eating and drinking well we decided to...

now ya see it

now ya don't

After we got done taking the g-tube out and putting the bandaid on Caleb seemed happy...

Sometimes, these holes, left by the g-tube will heal on their own, within a couple hours, other times, they don't. It has been a day now since we took it out and Caleb's is still leaking a lot, requiring many dressing and shirt changes. With how long Caleb has had his, and with how the stomach lining started to come out of the hole (sorry too much info) we are worried it may not heal on its own. If not, it will require to be stitched in surgery. Please pray this heals on its own and that he doesn't need surgery to close it up! Way to go Caleb on another HUGE hurdle!

Also, Caleb's hernia surgery is schedule for April 7th. The craniofacial team does not want to group the nose repair with this surgery as they feel it would be too much at once. So, as long as the surgery goes well and he extabates okay it should be a same-day surgery. We did ask if they would just go ahead and close the hole left from the g-tube while they are in there, and they said they would rather wait a couple weeks. I am a little upset with their response as if he is in there, why not do it while he is under rather than doing another surgery and exposing him to more General anesthesia. We are also planning a little vacation in a couple weeks, and it would be really nice if that g-tube site was closed up. So please pray for a smooth surgery and that the g-tube site heals quickly and on its own!

Also, we are meeting with new therapists tomorrow for Caleb's evaluation. This is the therapy I talked about a couple posts back that will be an out-patient clinic therapy that he will have to go to the site and do his therapy. They have tons of equipment that we hope will help Caleb with his delays!

Way to go Caleb for all your continued achievements!

Thanks all for checking in!

God Bless you all!!

God Bless Caleb!!

Clinic Appointments

2010-03-10T10:22:00.006-05:00

So as promised I am updating regarding Caleb's clinic appointments last week. Very busy week to say the least.

So on Monday we saw the whole craniofacial team, our family. This was the first group of docs that we met at Children's so we feel very close to all of them. They always watched over us and Caleb when Caleb was in the hospital. We hold them all very close to our hearts. With that being said, a couple things resulted from Caleb's clinic appointment with them. First, he needs to have his teeth cleaned, and thankfully he will not have to be put under General Anesthesia to have his teeth cleaned. I will be able to hold him when his teeth are cleaned. So thankfully that is one less exposure to GA. Also, Dr. Losee, Caleb's craniofacial surgeon, did suggest Caleb have his nose repaired one more time since Caleb didn't have the optimal molding circumstances prior to surgery due to how sick he was. So he said he would like this to be done before Caleb starts school. We also talked about tacking Caleb's right ear back at that same time. His right ear was folded over in utero therefore it grew bent over. The tacking of the ear will help his hearing aid stay on better also. Since this is the better of the two ears, hearing wise, and this is the only ear that can wear an aid, we want it to be the best fit for wearing the aid too. We also saw a speech therapist, who based of what sounds and words we told her he says (as he still doesn't talk in public yet as he if VERY shy when he gets out as being in public is very very new to him) they think his palate repair is working well in regards to his speech. We were then off to see ENT and audiology. They did another hearing test and it seems like the results are the same as in the past, severe deafness in the left ear and moderate to severe hearing loss in the right ear. These results are still surprising to all of us that interact with Caleb as it seems he hears so much and some things that are so low-toned and quiet. Also the ENT said that now they suggest a Catscan to see if there is anything anatomically that is causing the hearing loss or if there is anything that they could do to help his hearing. After that test, Caleb will then be seen in the Hearing Center to review the results. I did again ask if Caleb was a candidate for cochlear implants and they said that since he has a little bit of hearing in the one ear they do not want to do cochlear implants at this time, unless his hearing gets worse. Cochlear implants destroy all natural hearing and the hearing is replaced with an electronic style of hearing so he is not a candidate at this time as they do not want to destroy what hearing he has.
On Thursday, Caleb had an appointment with General Surgery to have a post opp appointment regarding his circumcision and to see what they think about the spot that I thought was an inguinal hernia. Well, first the doc said he healed well from the circumcision and I was right it is an inguinal hernia, which needs repaired ASAP. Ugh poor guy, I was really hoping, which I new wasn't realistic, that they would say let's see if it heals on it's own. But in the back of my mind, I knew that wouldn't be the case.
After that appointment I then walked over to craniofacial and told them what we found out about the hernia and that Caleb would need surgery and asked them if they would want to do the nose and ear repair at the same time, for one less GA exposure for Caleb. We have done this in the past, group surgeries together (logically though-not doing too much) to limit the amount of times Caleb is exposed to general anesthesia. But again, this depends on what is being done, who is doing it, the amount of pain that could be involved, etc. So there are plenty of factors. We are still waiting to hear back from Craniofacial as to whether they want to do these surgeries together. I doubt that they would feel comfortable doing a hernia with a nose repair, based on the locations of the surgeries. We will see. I will update when I hear. He also has an appointment with the Children's Immunologist on Friday and I will update on that too. Sorry this update took so long, but I was very tired after all the appointments last week.
So I wanted to include some pictures this post too! I included some of Caleb out in the snow for the first time, so cute.

Bundled up to go out. HA HA too cute right?!?!

Caleb peeking next to our awesome dog, Saba.
Caleb also just got new big boy furniture for his bedroom. I can't believe how grown up his room looks. I will post those pics soon. You won't believe it!

Thanks for checking in!

God Bless you all!!

God Bless Caleb!!

Bump in the Road

2010-02-26T12:08:00.002-05:00

Hello all...I hope everyone is staying warm and being safe in all the snow.

Well, we have hit a little bump in the road. The other day when I was getting Caleb out of the tub I noticed a bump that looked like an inguinal hernia to me. I called the doctor and they scheduled an ultrasound. Well, the ultrasound was this morning and the tech that did the ultrasound was puzzled as the bowel didn't seem to be entering the area where the fluid sac was and wasn't 'acting' like a hernia. She then asked if Caleb had any bowel issues at birth and I immediately said 'no'. I called his pediatrician and told her about the ultrasound and I am waiting to hear back from her. I am really hoping I hear something today as the hernia (that is what I will call it for now) has been more noticeable every day. Please pray that it is nothing serious and it is something that can heal on its own, the last thing Caleb needs is another surgery.

God Bless you all!!

God Bless Caleb!!

Bottoms Up!

2010-02-20T11:36:00.002-05:00

So Caleb has been doing great with drinking. He has been drinking around 30 oz of fluids a day! CRAZY huh?!? We are so excited! He is doing so well that we have stopped all feeds by his feeding tube at night. Our little boy is getting all his fluid intake right now by mouth! We are praying hard this continues! We would love to get his mic-key button out! The next step will be to figure out what to do with his meds as he still gets all of those via g-tube, and some are through the night too! So this will be tricky, but he can do it! We have faith!

Also another tidbit of great news...he is kicking that nasty cold on his own! Once again he did better with the cold than I did! He is closer to getting rid of it than I am and he required no medicines to help! WOOOOOHOOO Caleb! I am so proud of my lil' man! He is so awesome!

We have a busy month coming up of clinic appointments coming up so I will update everyone on the appointments as they happen.

We also may potentially be going to Duke in the middle of March. We were contacted by wonderful Dr. Markert (the amazing Dr. that did his Thymus Transplant for Caleb's immune system) and they have received grant money to do more research work in regards to the Thymus Transplant. This phase of research would be to see if and when the body stops making T-cells after Transplant. It is a non-evasive phase of research. It consists of a 24 hr admission at Duke where Caleb will drink certain amounts of 'heavy' water (certain water that bonds to t-cells) every couple of hours. Then he will get doses of this water twice a day at home for the next month or so. Then blood work will be performed and analyzed. When Dr. Markert called me to ask if we will be interested there was not hesitation in my response once I heard it was non-evasive. She is an amazing woman, who has saved numerous kids, and how can you say no to such a remarkable woman. We love you Dr. Markert. I will be going over the consent with Dr. Markerts wonderful head RN, Stephanie on Monday. So I will update on this too once we learn more!

Also, Bri and I went to the high risk doctor yesterday that we saw when we were pregnant with Caleb. Right away on ultrasound they noticed the smaller of the twins didn't make it. I wondered if it was going to make it as in previous ultrasounds it looks so tiny compared to the other. Dr. Thomas was great! He sat in the room with us and looked at everything on the other baby: the brain, heart, spine, face, fingers, arms, ears, eyes, nose, lips, etc. And so far everything looks great! They did ask us if we wanted to know the sex of the baby...We wanted to keep it a surprise when pregnant with Caleb, but with all the complications we found out Caleb was a boy. With this pregnancy, we felt like we have had enough 'surprises' in our life. We also were worried that if it was a girl and we didn't find out the sex we would be dressing her in a lot of boy clothes! So they were able to look at the sex plate and let us know that.......IT's A GIRL! Caleb is going to have a little sister. Personally, that is a great scenario as I had two older brothers looking over me when I grew up (and they still do!) and now Caleb can watch over his lil' sister!

God Bless you all!!

God Bless Caleb!!

Hello again...

2010-02-08T14:09:00.003-05:00

So Caleb continues to have his on and off days with drinking. The on days are pretty good now, he will drink OUNCES of milk and yes I said OUNCES. It is amazing the day he started chugging Brian and I were shocked. Love seeing him drink. One step closer to getting that feeding tube out, but we have to get him to drink daily and maintain his weight.

We are still having difficulty trying to get Caleb to walk. Good news we found out about a place closer to home that does speech, physical, occupational therapy and other services. We are so excited taht something like this exists so close to home! Brian and I DEFINITELY want to do this for Caleb, but this therapy does require Caleb to go to the facility. Now, Brian and I will have decide if we should wait until spring to start this therapy due to it being flu season. We are going to talk about it and also get Caleb's doctors' opinions. I am so so so so excited about this opportunity for Caleb hopefully this will help him with his walking, verbalizations, sign language, etc. This will be so great for him!

Unfortunately, Caleb has ANOTHER cold. We are very puzzled as were he got this cold. The poor guy has a very runny nose, cough, and is sneezing like crazy. We are praying that with rest he will recover from this cold and will not need antibiotics! Come on immune system, show us you are working!

Also another new development for our family. We found out that Caleb is going to be a big brother! That's right I'm pregnant. The ultrasound shows twins! One of the twins is a lot smaller than the other. We were planning on seeing the high risk docs that we saw when we were pregnant with Caleb as we are considered 'high risk' and even more so now that there are twin and those of different sizes. So we will see them in a couple weeks.

So as you can see we have been busy!
I will update again soon!

God Bless you all!!

God Bless Caleb!!

Once again sorry for the delay in posts

2010-01-26T11:33:00.002-05:00

Sorry for the delay in posts. Caleb and I finally got rid of the nasty cold we had. He seemed to do a lot better with it than I did. That is definitely an encouraging sign in regards to his immune system. Of course he did need help with antibiotics, but he fought of the cold. I am just praying we make it through the rest of this nasty flu seasons without anymore bugs.

A couple of updates:

Caleb had a couple days where out of nowhere he was drinking! One day he drank up to six ounces of milk! He never even drank when he was born so this was awesome to see. Unfortunately, the last two days he has had no interest in drinking so we are hoping he will get the urge to drink again today. I am going to work with him after writing this post, so we will see how it goes. Fingers crossed!

Brian and I took Caleb out with us about a week ago and had so much fun. We went to the store and then...wait for it....to Applebees. WOW, I can't even express how awesome it was to be out as a family at a restaurant. We wiped down the highchair and table and asked the hostess to seat us as far away from others as possible. It was so neat to do this. I think Bri and I smiled all the way through dinner. A cute little story while we were at Applebees: when we first sat down Caleb got a kid menu (which was neat as our kiddo could eat something off the menu) and he kept saying applesauce and signing it and we figured out he saw the apple on the kids menu. Cute right?!? He also met a friend, a lady, who he waved to and flirted with all dinner. Reminded me of when he used to flirt with all the nurses, his girlfriends, when he was in the hospital. We also go to see a a couple of friends while we were out. It was so nice seeing you all and thanks for understanding and not getting too close to Caleb! We love you guys!

Caleb has been mimicking Bri and I more, which is fun. We try to get him to say all sorts of things. Our favorite so far is 'butterfly' he sounds so darn cute when he says it! A lot of this mimicking is done without his hearing aid too so that is amazing in itself also. In regards to his hearing aid, we got it fixed about two weeks ago. We tried a local audiologist which we loved, Tri-state Audiology, and she was great! Caleb wore his hearing aid the first day after getting it repaired but now we are having a lot of issues with trying to get him to keep it in. He has never done this. Have any other parents with kiddos with aids dealt with this? If so, what happened? Any feedback would be appreciated!

Well that is a good amount of updates for now, there are many more. I will update again soon so please stop back soon! Thanks for stopping by!

God Bless you all!!

God Bless Caleb!!

We had a great Christmas and New Year

2010-01-01T12:41:00.007-05:00

So what is the meaning of Christmas...not the amount of present under the tree and how much money you spent...it is that your family and loved ones are around you. We were blessed to spend our second year in row AT HOME as a family for Christmas and New Year's. What a great day. Caleb didn't open his gifts as he wasn't sure about it but he was very intent when I or Brian unwrapped his presents. Thank you to all the Santas that sent Caleb gifts too. You all are too too kind, thank you so much! I have included some pics of a snowstorm that came a couple days before Christmas, Caleb opening his gifts, and Caleb looking/playing with the Steeler tree we got from my parents.

Make an on-line slide show at www.OneTrueMedia.com

Unfortunately, a couple days after Christmas Caleb got very congested and we were not concerned as long as it didn't seem to bother him or get any worse. I, about two days after Caleb started getting congested, ran a fever and got very congested also. Well, this morning he woke up coughing or should I say barking like a dog or a seal. I walked into his room and he was sitting up in bed crying and coughing and trying to catch his breathe. Brian and I noticed his congestion had started moving lastnight and we were worried that maybe his congestion had moved to his chest. Our pediatrician is out of the office for the holiday so we decided to take him to MedExpress as we love all the docs there. They were great. We were so excited when we walked in and saw Dr. Burkland! He is not only an awesome doctor but a family friend! He said that both Caleb's and my symptoms are due to a nasty bug circulating around that is very similar to the flu. He listened to Caleb's lungs and said they sounded clear! Thank goodness. So they gave his a strong steroid via his g-tube that will hopefully help him with his cough and will help him get rid of his cold. I will post soon with updates on his cold.

Also, on a side note, some anonymous person is leaving unwanted comments on this blog. I now will get notifications when someone leaves a comment then if it is not that person I will post. So please don't be alarmed if you don't see your comment right away and PLEASE continue to leave you comments.

Thanks for checking in!!

God Bless you all!!

God Bless Caleb!!

Cookie Day

2009-12-18T10:31:00.008-05:00

First thanks again for the suggestions on the crafts that I can do with Caleb! I got a lot of great ideas! Already started an alphabet word line. I will take pictures of it when I get it hung up and as we work with it!

Well it was a big day here yesterday. What a great day. I started the day by getting my hair done, much needed. Thanks Alana-it looks great, love ya tons! Then I went to the store to get some groceries. This was the first time that we did not wipe down the groceries, very weird as wiping them down with viral wipes has been the norm. So hard to break the habit even though you want to so much. It will take some getting used to. You become somewhat warped. You even think when you get the item out of the cupboard that 'oh this is one of those items we didn't wipe down this time', 'should I wash my hands'...you become very obsessive compulsive regarding cleanliness. We are adjusting...it will take time. I can't imagine how hard it will be when we stop some of the other restrictions that we are doing...baby steps...

Next was cookie making time. Brian was off so this worked out perfect. We did sugar cookies and peanut butter kisses and Caleb really like watching us decorate the cookies, he really liked to undecorate them. Another first! We had a blast.

God Bless you all!!

God Bless Caleb!!

Thanks for the ideas

2009-12-16T10:31:00.002-05:00

I did receive some great ideas on some approaches and items to try to get Caleb to drink. Thank you everyone so much! HE LOVES TO EAT now so if we can only do that for drinking and get that feeding tube out I would be ecstatic. I can't believe that when he first came home we dealt with his central line, IV, too. WOW! What he has been through. I pray that he can continue to make improvements and keep fighting. I also pray that his immune system continues to improve. I am gonna write his docs at Duke today to just get some feedback. We are still living in complete isolation for his safety, but just want to see if they have any suggestions on anything that we may be able to do with him now and if we can take him anywhere.

Also, if anyone has any craft ideas that I can do here at home with Caleb I would greatly appreciate. You can only play with Playdo and coloring books for so long. So any suggestions for crafts would be great. I think he and I will make cookies tomorrow while his daddy is off. OH and also I am going to get my hair done tomorrow! WOHHOO so exciting, I haven't had it done in about five months so it could use some work.

Well, I gotta go, I will post pics of some cookie making tomorrow!

Thanks for stopping by!

God Bless you all!!

God Bless Caleb!!

Advice and Suggestions Much Needed!

2009-12-13T12:56:00.002-05:00

So as many as you know, Caleb has an oral aversion due to what he has been through. We have in the past year been able to finally get him to eat, however, we cannot get him to drink. I am asking for any advice from others on what worked for your child on getting then to drink (i.e. sippy cups, straws, types of juice, therapy, etc) Please help! We want to get this feeding tube out of Caleb and get him drinking on his own!

Thanks in advance!

God Bless you all!

God Bless Caleb!!

Second H1N1 shot but no second round immunizations

2009-12-11T09:22:00.003-05:00

So I took Caleb to go get his second H1N1 shot yesterday. The doctor wanted us to wait another month for his second round of immunizations though. He did great, he is now figuring out that every time I take him there he gets a shot, so he got pretty upset as soon as I took him back, poor guy. But he is also smart enough to know that as soon as I pull his rain cover 'germ shield' down he is safe from anyone touching him and calms down immediately. He is too cute. What a smart boy! It was freezing cold, windchill was below zero when we went, yikes. Of course, I got the typical comments/stares on the elevator when we were in there regarding him being under the shield. One gentleman stared and said, 'well that's interesting' I said 'yea, he was born without the part of the body that makes your immune system so that is how we protect him from germs' he then said 'wow, what are the odds'...I then said 'well he actually has two very rare syndromes, that makes him the sixth case in the world'. He then said 'wow you all should play the lottery.' uh...Yeah...ok

Anyway, Caleb is becoming quite the mimicker lately. He is trying to say words that we say. So that is fun. We especially like that we know that he now recognizes who 'ho ho' is, Santa. I am not sure he totally gets what Santa does, but one step at a time right?!?

Also, I am excited that we will soon be able to see our families again. My mom and dad are planning to come this weekend and the countdown is on for the rest of the family of when it will be safe for them to come and visit. We are so very excited!

I am still frustrated with the isolation precautions. I know it is what we have to do to protect Caleb, but all of us would like to do things outside of this house. I also know that most importantly Caleb would benefit and prosper so much if we could get him out of this house and do different activities. Again I know in time these things will happen. But quite frankly the phrase 'in time' is not specific enough for me anymore.

God Bless you all!!

God Bless Caleb!!

An outing leads to some frustration..

2009-12-08T10:51:00.004-05:00

So we HAD to get out of the house lastnight. We all are suffering from SEVERE cabin fever. So we hopped in the car and went to cruise through the festival of lights (for those of you not from the area-a local resort has Christmas light displays throughout the park that you drive through and look at) Well...Caleb was shocked when we went outside but got excited when we got in the vroom vroom, his way of saying car. {I am happy he was excited to see the car, as usually the only time we go out is to take him to the doctor.} So off we went the three of us. Well, halfway throughout the lights we spent most of the time talking VERY loud to Caleb as he was trying to go to sleep! It was so so nice to get out of the house. So nice! It is a little bit of tease to go out though as we don't go out.
Well speaking of going out, Caleb will be heading to the doctor on Thursday morning to get his second round of childhood vaccines and to get his second H1N1 shot! I am so happy to hear that the H1N1 virus, for now, seems to be not as widespread. Hopefully it can stay that way. I know the seasonal flu is soon to start spreading, but Caleb has gotten the seasonal flu shot so I am a little less freaked out about that one.
So I have to start to wonder, when can we start leading a normal life? I wonder if anyone will ever give us the 'go-ahead' When can we go to to a department store with Caleb?, when can Caleb go see Santa?, when can we go get professional pictures taken of Caleb?, when can we take Caleb to the grocery store?, when can we stop wiping down all of groceries?, when do we not need to take showers every time we leave the house and come back in?, when do we stop having to worry about the mail as 'dirty'?, when can Caleb go to some therapy groups? When can we have normalcy? I know I don't usually show my frustrations on here, but it has been over three years now and wow three years...Yes I know it is better than living in a hospital room, but when can we start doing some normal things? I have tried not to be somewhat jealous of when others can do things but it is tough. I see pictures of other friends' kids with Santa or getting their professional Christmas portraits taken and it is hard. I would love to take Caleb to a movie or to a parade or to a local Christmas show, but we can't....When can we? I just know that Caleb is missing out on some awesome experiences...I know in time...but when?

Since Caleb can't go see Santa I brought Santa to him...for those of you who have kids try this out. Check out Caleb's video http://portablenorthpole.tv/watch/391301f6b0b943ca023324bf2593dea8. If you want to make a video for you child go http://portablenorthpole.tv/home

Sorry just would like to start having some normalcy...

God Bless you all!!

God Bless Caleb!!

Vaccinations, Train, Ornaments

2009-12-05T14:07:00.006-05:00

Well, thanks to a good friend, Nicole, our families have been given the opportunity to get the H1N1 vaccine so they can come to the home and visit. They couldn't come until they were vaccinated as it was not safe for Caleb. Well the last couple family members were vaccinated yesterday, so the countdown begins as to when they can come visit. NINE days and counting. We are so excited to see our family again. We have been in seclusion, and I must admit it is Cabin Fever times a million. We are so excited to see you all! We miss you so so much!

Bri got a hold of his old train from when he was little and we weren't sure how Caleb would take to it, but he did! It was so cute! The boys set up the train and Caleb got used to it pretty quick! He even takes the cars off the track and plays with them, big step sensory-wise as sometimes this warming up step can take a couple days!

Caleb and I made Cinnamon Christmas ornaments yesterday and he didn't really get into it, but he did watch. I don't think he wanted to touch the 'dough' as it was a weird texture. I did try to get him to help me roll the rolling pin and he wasn't having that either. At least it was something different for him to do/see. I have got to get my hands on more craft-like things like that for us to do!

God Bless you all!!

God Bless Caleb!!

Thanksgiving

2009-11-27T14:33:00.003-05:00

Well it isn't hard to figure out what we were thankful for this Thanksgiving! We are so thankful that we spent this Thanksgiving together under one roof, in the same state, in our home, together. What a simple but enjoyable day. To top it off. . . we cut the turkey very very small for Caleb and he ate turkey as well as everything else that we ate! He ate as much as me! It was so awesome to see. Thank you Lord for allowing us to have such a wonderful day together.
Unfortunately, we were unable to spend the day with my parents, Brian's parents, our grandmas, or my brothers and their families until they are immunized to H1N1 or Caleb is completely immunized, whichever comes first, before they can visit. We miss you all and love you very much.
Happy Thanksgiving to all of you. Please keep all of those in your prayers that are spending this Thanksgiving holiday like Brian, Caleb, and I did in a hospital praying for their loved one's recovery. Also, God Bless all those who are serving our country and who are away from their families this holiday.

God Bless you all!!

God Bless Caleb!!

I'm Alive and Well

2009-11-12T11:15:00.005-05:00

So many of you know that Brian and I are HUGE Kenny Chesney fans. So when I heard his new song, I'm Alive (playing in the background), with one of our other favorite artists, Dave Mathews, I was in awe. It reminded me of everything Caleb, Brian, and I have been through. It feels like it is our theme song. I tear up every time I hear it, remembering all that we have been through. Never take a breathe for granted....

Here are the lyrics:
I'm Alive lyrics

Kenny Chesney, Feat - Dave Matthews

So damn easy to say that life's so hard
Everybody's got their share of battle scars
As for me I'd like to thank my lucky stars that
I'm alive and well

It'd be easy to add up all the pain
And all the dreams you've sat and watch go up in flames
Dwell on the wreckage as it smolders in the rain
But not me... I'm alive

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
And I'm alive and well
I'm alive and well

Stars are dancin' on the water here tonight
It's good for the soul when there's not a soul in sight
This motor's caught its wind and brought me back to life
Now I'm alive and well

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
Now I'm alive and well
Yeah I'm alive and well

God Bless you all!!

God Bless Caleb!!

Shot 1

2009-11-10T14:26:00.002-05:00

So I took Caleb to go get his first of two shots for the H1N1 vaccine.

Taking him by myself, without Brian, is very stressful to go alone as I have to keep myself 'clean' so I can interact with and touch Caleb when needed. Therefore, I carried a lot of antibac and viral wipes. He was under his rain cover, to protect him from respiratory droplets and to keep him safe. He doesn't tolerate the pediatric masks at all, I wish he would but the rain cover also prevents him from touching stuff too. I used the viral wipes to open doors and touch elevator buttons. Then, I tried not to rub up against anything so I could stay 'clean'. Then when we got home I gave him a bath and I got a shower after I bathed him. An outing is nice, but is very stressful and a lot of planning goes into it. Thanks everyone at Dr. Archbold's office for opening the doors for me and such once we got up there. You all are awesome!

Caleb can get the second shot in twenty eight days. Ten days after the second shot he will have full coverage...so we have to pray we can continue to keep him healthy. Brian and I also got vaccinated and ours was the normal 'one shot' since we are adults. I am praying that Brian and I can also stay healthy for the next ten days (estimated amount of time for your body to build immunity to this virus) as our bodies build immunity to the virus. If we can do that, then we can have even a better chance of keeping Caleb safe from the H1N1 virus. So we are praying hard. Needless to say, Brian and I are VERY VERY stressed right now regarding this virus and protecting Caleb. We thought we were easing somewhat towards normalcy and then this virus came along and turned everything upside down. We have stopped all visitors from coming by until either Caleb is completely vaccinated OR they are vaccinated and well past the time the immunity should kick in to this virus, whichever comes first. We will continue to do all the other precautions (wiping down groceries or anything else that enters the home, shower when coming back into the home after leaving, etc.) we have been doing to protect Caleb throughout this flu season.

Please Lord watch over all three of us and keep us healthy as our bodies immune systems build immunity to this virus so we can protect Caleb!

God Bless you all!!

God Bless Caleb!!

Finally

2009-11-09T13:40:00.002-05:00

The shots have finally been droppped of at the doctor's office! YES!

Caleb will have to get the vaccine in two seperate shots as per any child of his age. Therefore, he won't have complete antibody/immunity coverage for about two weeks after his second shot, which can be given a month after the first shot. I will be taking him tomorrow to the doctor's to get his shot! I am taking him into the office early, so there won't be any 'sick' kiddos around. So nervewracking...germs....uh...so nervewracking. The other good thing is that Brian and I are also getting shots too, so hopefully we can protect Caleb from anything being brought into the house. Caleb's doctor is awesome, as they are also staying late today so Brian can go in and get his shot tonight as he can't go with us tomorrow as he has started his NEW JOB (he is now the Assistant Manager at the AT&T elm grove store!-CONGRATS BABE). I am so happy that Bri is getting his shot, as he is nervous as he interacts with many people daily, so I am praying also that he can stay healthy while his body build immunity to the H1N1 virus...Please pray that we can all stay healthy and keep this nasty bug away from Caleb as we all build immunity!

God Bless you all!!

God Bless Caleb!!

Still waiting

2009-11-09T09:36:00.001-05:00

So we are still waiting on the H1N1 vaccine for Caleb. It is absolutely amazing to me how this gentlemen, keeps 'forgetting' to drop off the vaccine to Caleb's pediatrician's office. My brother actually got the Mayor involved and the Mayor had to call the Health Department Administrator to remind him to drop off the vaccine, so we will see if he drops it off today....Amazing....we have been waiting for a month now for this shot....absolutely ridiculous....

Please pray that Caleb can continue to stay healthy and can get this shot ASAP...

God Bless you all!!

God Bless Caleb!!

We had one...and then...

2009-10-30T10:49:00.002-04:00

Well...I got a call yesterday from the administrator from the health department telling me they had a shot for Caleb and he could get the vaccine today or next week depending on when it was convenient to be administered. Then as quick as we had a vaccine for Caleb it was gone...you see. the gentleman didn't realize Caleb was three (not like we hadn't discussed his age in previous conversations) and the vaccine he had was for 4 year olds or older....AMAZING. So there is supposed to be a H1N1 clinic next week, the one he wanted us to take Caleb to originally, and he is hoping that he will get a vaccine next week for Caleb that can be administered, however he is not expecting us to go to the clinic now to get it administered....

Thanks to all for your continued efforts to try to get Caleb a vaccine. You all continue to be so awesome to our family! I hope we can get him vaccinated soon as this virus is running rampant in our town, just like the rest of the country.

Everyone please stay healthy!

God Bless you all!!

God Bless Caleb!!

H1N1 shot update

2009-10-28T15:05:00.001-04:00

So I just got a call back from the guy at WV Immunization Complaint Hotline, and he said that he may be able to get a vaccine for Caleb by the end of this week early next....please pray!

God Bless you all!!

God Bless Caleb!!

Does it really have to be this hard...

2009-10-28T14:34:00.002-04:00

So I am sitting here tears as I am typing this...I am so mad and so frustrated...I have been trying to get Caleb a H1N1 vaccine for weeks now and it's just not happening.

I wrote Shepard Smith with Fox news this will give you an idea of what has gone on:

Dear Shep,

I know you are a busy man, but I am writing you to see if you can help in any way. My son was born with two very rare syndromes, CHARGE and DiGeorge. The Charge effected his brain, heart, hips, ears (deafness), etc and the DiGeorge effected his immune system (this syndrome is one in which the child is born without the part of the body that creates the immune system). There is one place in the world that does an experimental transplant that after it grafts (which can take up to two years) will provide the child with an immune system. Our son spent two years straight in the hospital and we almost lost him a couple times. He is now three and he, myself, and my husband are a family again AT HOME. Caleb still has to live in complete isolation in our home, until his blood work shows his immune system is working. He is like the 'bubble boy'.

So his doctors at Duke suggested he get vaccinated to the H1N1 vaccine as he is in the 'high risk' category. I called our local health department weeks before to get him on the 'list' and the secretary said their was not such list and to just call back. I continually called back and got the same story. One of the mornings that I called I later got on our local news station's website and saw a news story saying that the local health department was scheduling the first immunization clinic. I then called back the health department and asked to speak with the administrator. He at first seemed like he was going to help me and send a shot to our local pediatrician so Caleb wouldn't have to go to one of those mass clinics. He then send he would send her paperwork and I should hear from the pediatrician next. Well after not hearing from the pediatrician, as I know they wanted to get him vaccinated as much as I do, I called them. They indicated they did not get any paperwork. By this time many schools in the area are holding mass clinics for children without pre-existing health conditions. Please don't get me wrong, I think it is great that other kiddos are getting vaccinated, just don't understand why my son who is in one of those '5 high risk groups' is not a priority. I called the health department administrator back today and he was nothing but rude to me, quite different from our previous conversations. He said he didn't send paperwork to the pediatrician, that she would have to enroll to be able to administer the shots then her application would have to be reviewed by the state. I then said that seemed like it may take too long and asked if I could just bring him down to the HD to get him vaccinated (which is not the safest of options) so he could get the shot. He then said after he took a bite of something and started eating on the phone, that I could bring him to a mass clinic for his age group at the health department. I asked 'could I bring him a little early to avoid the crowd' He said 'you can come early to get in line early' I was shocked at the lack of emotion. I called the WV Immunization complaint hotline and the individual I spoke with said that he was aware that after calling the HD (after getting another complaint similar to mine) that the HD explained that they were vaccinating some kids in schools because of breakouts. I totally understand that reasoning, but my son and a couple others fall withing CDC's guidelines....when did local authorities have the right to change government guidelines? Why am I fighting so hard to get my child, who should have been vaccinated first to get a vaccine. I couldn't even take my son to one of those mass clinics as the nasal form of the vaccine would be present and he cannot be around that. I am just at my wits end. I am scared. We almost lost our son to a very serious lung infection (another fact that the local health department is aware of) and the shot is there, yet I can't get him vaccinated safely?!? I have know become aware of other families in the area who have family members who are in the 'high risk' category too and can't get their family member vaccinated.
If you can help in any way I would so appreciate it

So I just got off the phone with the WV Immunization Complaint Hotline and so far nothing promising coming out of that either...

God Bless you all!!

God Bless Caleb!!

Please Pray for this Little Boy Alex and His Family

2009-10-26T23:13:00.002-04:00

Hello everyone. I got an email from my friend Jen and one of her co-workers family members sent her an email with the following:

All – I am writing this morning to ask for your prayers. My niece Amy & her husband Eric have two children, Alex (4) and Abby (21mo). Alex was complaining on Monday that his neck hurt & was walking a bit funny. However, after dinner Monday, he went outside to play in the yard with the kids in the next door. During the night he was up a lot complaining how his neck hurt & he spiked a fever. My niece got dressed for work Tuesday, but took him to the pediatrician to see if it was an ear infection or something. They sent her to the hospital with Alex. Children’s began to run all kind of tests on him. A few hours after being at the hospital, Alex lost all feeling and motion from his chest down. They ran all kind of tests on him eliminating, meningitis, h1n1, guillain-barre syndrome. Finally close to 7pm they came in and told my niece & Eric that he had a mass in his spinal cord & needed immediate surgery. My sister & brother-in-law were at the hospital at this time & the neurosurgeon explained the procedure and that Alex had a lot of bleeding in the spinal cord. The way he explained it to them, Eric asked “are you telling us this is life or death?” The neurosurgeon responded “Yes”. After 3-4 hours of surgery Tuesday night, they determined Alex had a mass of blood vessels in his spine, removed them, put titanium clips in his spine & brought him to ICU. He was on a ventilator. The good news was that it wasn’t bleeding as bad as they thought & he survived the surgery. Wednesday, he was very heavily sedated but was able to blink with closed eyes & nod his head. He was given a feeding tube on Thursday & they tried to remove the ventilator after his oxygen levels increased. Thursday the pathology report came back & showed no tumor cells or cancer in the blood mass they removed. He showed signs of reflexes in his arms & toes. We thought he was making good progress, plus he was able to urinate which they weren’t sure he’d be able to do on his own. We knew he still had a long road ahead of him with therapy but were feeling better about his prognosis. Unfortunately, Friday afternoon they had to put the breathing tube back in because his oxygen levels fell. The reason I’m writing now is about 3:30 this morning he showed signs of complete paralyzation again and his fever spiked to 102. They performed another MRI because they were afraid the mass had returned. Thankfully the MRI was clean but did show excessive swelling. He has been heavily sedated and will be in ICU for a few more days. They still don’t know if he will ever have use of his arms or legs again, currently he has no reflexes at all. Nor do they know what caused this mass. They are testing for blood disorders and will be checking my niece and her husband.

Please add this sweet boy and his family on to any prayer list and keep him in your prayers! You can keep updated on his blog, https://www.carepages.com/carepages/ChuckandBear. You will need to become a 'member' of carepages if you are not already one. It is free, you just need to create a screen name and password. Thanks all for your prayers for this little boy and his family!

God Bless you all!!

God Bless Caleb!!

Growth Spurt?

2009-10-17T14:41:00.003-04:00

Okay so yes I am going to post this....Is it a growth spurt or what?!?

So as you all know Caleb is our first child and we have delved into the world of eating (so we are trying to figure out how much a child of his age would typically eat)...A wonderful world! He is finally eating by mouth and now lets me know when he is hungry by signing eat. Of course, we started off slow but he now eats three meals a day with snacks in between and this is all based upon when he signs to me that he is hungry. Here is a sample of what he ate yesterday:

Breakfast: Bowl full of Oatmeal

Lunch: Toddler Tray with 3/4 cup of a pudding snack

Snack (hour after lunch): another pudding cup

Dinner: another Toddler tray

First snack: HUGE bowl of ice cream

Second snack: Two toddler fruit bars

He signed that he was still hungry after the second snack, but I thought that was more than enough for a child his age?!? Am I wrong? Yoi this kiddo can eat (LOVE saying that)!

He still cannot chew so we have to cut things up for him and we are working on the drinking. I did get him to take multiple gulps of apple juice yesterday and the day before, so hopefully this is a sign too that we are getting close to getting him to drink. We shall see!

God Bless you all!!

God Bless Caleb!!

Fives

2009-10-09T11:19:00.002-04:00

So another thing we have been trying to get Caleb to do for months is to give fives (high fives). We have been working on this for awhile now and lastnight I asked him for 'fives' and he did it!! I wanted to cry! I asked for fives and he did it! Love you Caybay! Keep up the great work!

God Bless you all!!

God Bless Caleb!!

Two Blog Posts in One Day......

2009-10-08T17:54:00.003-04:00

means its gotta be something good.

As you all know we have been working with Caleb on trying to get him to drink. We try at every meal and get around 5-6 sips in his mouth, which usually accounts for an ml or two. Well at dinner tonight he did great! We still hold the cup and put the spout in his mouth and tilt the cup. I figured out tonight if I gently put my hand on his forehead it somehow calms him to take the small amount that I pour into his mouth. I am so ecstatic to say he took a little over an ounce of apple juice tonight with dinner. AN OUNCE A FLIPPIN' OUNCE! WOOOO HOOO CALEB! This is the most fluid Caleb has EVER taken by mouth! WOOOHOOOOO!

God Bless you all!!

God Bless Caleb!!

Another Milestone

2009-10-08T10:58:00.003-04:00

So, we have hit another milestone.

Because Caleb's IgG levels were in the normal range, we were given the O.K. by Dr. Markert for Caleb to start getting his vaccines. However, NO live vaccines, Chicken Pox and Hep A, can be given.

We were so excited that we hit this stage in his Immune System Development! So Tuesday we took Caleb to his Pediatricians office to get his first round of shots. He got his DT&P, PCV, HepB, Hib, Polio, and his flu shot. I felt bad for the nurse as she was so upset she had to give him four shots! He did great! Of course he was upset, but he was such a big boy. We were very excited to get him there to get his shots, but, at the same time were very nervous to take him out in public as we have heard of some possible H1N1 cases in the area. That vaccine isn't coming until mid October to early November. I wish we could get our hands on that vaccine ASAP. But we are trying to be patient. None of us can get the nasal form of the vaccine as it contains some of the live form of the virus in the vaccine. So we nervously wait for that vaccine to get to us so we can get Caleb and ourselves that shot so we can protect Caleb. So scary!

As far as his development.

I love that I get to say this...but he eats sooooo much. I love saying that! He eats all three meals and snacks! We have dropped another feeding tube bolus out of his schedule as we are hoping that what he takes by mouth replaces the calories that he would have gotten by that bolus. We are still working on drinking. He seems to be a little more receptive to the sippy cup being placed in his mouth. So I hope that will come along like his eating did. It was so great this morning I went into his room to get him ready for the day and the first thing he did was sign 'eat'. He does that when he gets hungry during the day too! So awesome!

Walking: well....not much going on here. He absolutely hates that walker that we got awhile ago. I was looking into the possibility of getting him a gate trainer walker. But his PT is not for the idea. I just do not know what to do regarding the walking. He can 'opt' out of the other walker by sitting and he doesn't want to hold your hands and walk either. The gate trainer style walker kind've braces them in so he can't opt out. I also think this would help him work on his balance. These walkers start around $1,000, so we are looking into other therapy ideas...open to any suggestions...

I have been trying to get Caleb to draw and color for months! Every couple days I would take out the crayons and draw and then see if he would draw or color and no go. This routine went on for MONTHS! Then low and behold, last week he started to color! I wanted to scream! He loves crayons and his aquadoodle now. A couple days ago, he spent the whole day coloring! He is now at the point where he draws something and then signs to me what it is. Love it!

He is pretty good with his colors. For example, if I ask him by signing 'where is the red lego?' He finds it and we do that for all his colors. We are working on counting and shapes. I am trying to find different ways daily to teach him these concepts.

Well that will do it for now! Have a great day!

God Bless you all!!

God Bless Caleb!!

IgG Level is Back

2009-09-24T15:54:00.002-04:00

Well here is the email I received today:

'Well, our numbers came back only a little better--his IgG was 483. However, Dr. Markert feels that as long as he is in the normal range for his age (and he is--it is 391-1070) that's good enough so no more IVIG. (She feels the reccommendation for >600 is actually more applicable to > older patients.) We can check it again in a couple of months just to make sure it doesn't drift down over time. His tetanus antibodies were normal so she says he should proceed with his normal childhood immunizations (BUT NO LIVE VACCINES). Please ask the pediatrician to give all doses of the killed vaccines (as opposed to the "catch up" schedule which omits some doses based on age) And as we discussed, he should get the seasonal flu vaccine and the H1N1 vaccine when they become available. Please let me know when you schedule an appt with your pediatrician as we will want a blood sample just prior to his immunizations and I will ask them to repeat the thyroid profile. The one in the hospital was reported as "quantity not sufficient".
Stephanie'

So we of course have email them back with some questions! But this is great news! I don't have to stick him anymore every week for the IVIG infusions! He is going to get immunizations?!? Really?!? I never thought this day would come! I can't wait for more exciting milestones to come for his immune system! Keep working Immune System and Thymus! One more step closer to normalcy! Go Caleb! We are so proud of you!

God Bless you all!!

God Bless Caleb!!

My Big Boy Updated

2009-09-21T17:17:00.003-04:00

After all the aversions...who would have thought?!?! Yes, we still will be working on drinking as he hates that, but he used to hate eating too and would be so scared of it! Look at this!

**Update: So not only did Caleb feed himself lunch, he fed himself dinner and all of it. Also, he feed himself with not one spoon, but two! I was shocked. I gave him two spoons to see if he prefered one over the other and he liked both! Too funny! He did let any go to waste either. He also ate TWO pudding cups for his bedtime snack! No failure to thrive anymore! He wiped his mouth and hands too when I asked him! Wow Caleb you are awesome little boy! Now, I just need to continue working on getting him to drink.

Thank you all for enjoying all these milestones as much as we do!**

God Bless you all!!

God Bless Caleb!!

Waiting game

2009-09-21T10:25:00.002-04:00

Still no update on the IgG level! I am not really expecting to hear anything though until earliest on Wednesday! So we are praying hard for an awesome IgG level.

He is healing nicely from his surgery. You can definitely tell that he is still sore from the surgery but the incisions look good so far and the bruising is lessening.

We have met all of Caleb's new therapists through he school system. I hope and pray that they can provide the appropriate resources to help us work with Caleb and his delays.

He is getting more and more mobile everyday. He is climbing all over the place. Now if I could only get him to walk! We are looking into walkers that Caleb wouldn't have the possibility to sit down, that somehow we could 'brace' him into his walker. The one he has now, isn't working. He just sits down when we stand him up! Hopefully, we can find one that will work and will get him mobile.

I continue to work on different foods with Caleb and he is doing well. So amazing our little boy is getting better and better every day eating. We continue to work on the drinking. He definitely has a fear of drinking and I continue to work on that with him.

We are still waiting on flu vaccines for Caleb. He is on the waiting list at his pediatrician's office for the regular flu shot. As far as the H1N1 vaccine, it isn't even available until mid October. I called the local health department to see if I could start whatever paperwork is needed so Caleb could get his shot as soon as they get the vaccine and the lady was of no help on what I need to do to get him a vaccine.

Well sorry for the quick update but little man is into stuff and I gotta go! Have a great day!

God Bless you all!!

God Bless Caleb!!

Bloodwork

2009-09-18T17:28:00.002-04:00

So the immune level we have been waiting on came back. Children's ran this lab and was to send the info to Duke. Please read the email I got from Dr. Markert's head nurse, who is also a good friend, today below:

Dear Sarah,

I spoke with Dr. Rao this morning about Caleb's labs. The IgG level was reported at 444, which is low but there was a disclaimer that they had "insufficient sample to properly run the test so the result may not be valid. " So basically, it doesn't really tell us anything. However, I had frozen away some serum from the blood sent to us so I will have them run an IgG on it here and we'll see what we get. I think they run the test on Mon Wed Fri so I may have some results by the middle of next week. So sorry, I know the waiting is killing you but I want to make sure we have a valid result before we act on it either way.

So...here we are...I did some research and the normal range that I found was 620-1400. I pray that the result from Children's is wrong and that his IgG (major antibody found in the blood that fights infection) level is not really that low.

I will post the Duke IgG level as soon as we get it!

God Bless you all!!

God Bless Caleb!!

Surgery

2009-09-16T10:05:00.002-04:00

Well yesterday was a very long day for all of us.

We found out early afternoon on Monday that Caleb was going to be the first case on the OR schedule. Which was great news for us as: 1. this was the first surgery that we had to deal with Caleb possibly getting hungry during the wait as he now eat some by mouth and 2. that hopefully we would get home early as we live about a little over an hour away from CHP.

So we got up at 4:00 a.m. yesterday morning so we could get on the road by 5 as we had to be at CHP by 6:30. This surgery was at the new Children's too, so we also had to realize that we would not be used to the flow of operations, waiting areas, etc. We got there and checked in and of course we got the normal stares, as our child is in a stroller covered by a rain cover to protect him from respiratory droplets. It is very hard to put a pediatric mask on Caleb now as he is older and rips it off almost right after I put it on.

So we got him back into pre-op about 7:00. (*The subject of the reverse isolation precautions did not go as well as I had hoped. I think it was probably easier to enforce when he was inpatient as when he was inpatient they had a HUGE note on his chart about the precautions and when the nurses would take him to pre-op when he was an inpatient they would make it very clear about the precautions and thus others continued the information trail when they moved him throughout the hospital. So it could have been better as far as the isolation precautions for Caleb*) The surgery was supposed to entail: a look at his ears and new tubes as children with cleft-lip and palate will always need tubes, circumcision, blood draw for Duke for Immune bloodwork, and to pin down a undescended testicle (testicle is sitting a little high. They pin them down so the normal testicle exams can be performed accurately). About 7:30 we had signed all the consents. I felt bad as Caleb started to sign 'eat' obviously he was hungry. As bad as it was that he was hungry, it was exciting at the same time that he was signing that he was hungry as this is the first surgery that we had to deal with the fact that Caleb may be hungry as he has started to eat by mouth since his last surgeries. Around 7:45 they asked us (so they could limit the exposure to Caleb) to administer some Tylenol and Verset (spelling?-a medicine to help him relax) into his G-Tube/feeding tube. The pre-op Verset was new to us as in the past Caleb was in-patient, had an IV, so they would administer the relaxation meds when he got down to the OR. So it took about 10 minutes and Caleb was RELAXED. It was sad yet cute at the same time. He seemed drunk. So 8:30 they took Caleb to the OR. We got to walk with him to the OR as we have done in the past. Caleb has been through so many surgeries I can't even count: open heart, gall bladder removal, multiple sets of tubes, multiple line placements, Thymus transplant, two separate Nissan wraps (stomach surgeries), two separate shunts on his brain placed, just to name a few. This surgery wasn't any easier when I had to leave him. Even though he was relaxed he kept looking back at me and Brian when they were pushing his crib down the hall. It broke my heart. So once we checked into the waiting room, Brian ran down to the cafeteria to get us some breakfast. While Brian was gone our wonderful friend, Dr. Otteson, came out to let us know he was done with Caleb's tubes. I was shocked at how quick he got the tubes done. He said that Caleb did great with his part and his ear canals actually were bigger this time so Caleb didn't make Dr. Otteson work so hard to get this set in. Dr. Otteson has put the other sets in and Caleb has been known to have very narrow ear canals and we weren't sure if this was CHARGE related or typical age-related canal size. So this was a good sign that the canals seemed bigger. He then said that they were trying to find a vein to draw his blood for Duke. He said 'boy that is a lot of blood they want' and it was. I heard the order and that was probably the most blood to date that they needed for Duke. I used to draw the blood, when he had his central line at home, and then I would draw about 4 tubes. (*I later found out this order was double the amount and they stuck him about 18 times to try to get all the blood) So I had assumed the next part of the surgery had started. About 5 minutes later I heard the gentleman ask another set of parents if they were the Hlebiczki family and I let him know I was. He then told me that the OR was on the phone and needed to talk to one of the parents. My stomach dropped. They got the Urologist on the phone and he said that everything was find but now that he had been able to a more thorough exam he noticed that both testicles were a little higher up than he liked and he would like to pin them both down while he had Caleb under GA (general anesthesia) now rather than waiting to do it in a separate surgery. So I consented over the phone and they proceeded. Brian came back shortly after that happened and I told him the updates. About a hour and half later the surgeon came out and let us know that he was done and that Caleb did well and they decided to do a block (numbs the area where they operated) to help with the pain after the surgery) as they did more than planned. We waited about 45 minutes longer and we were able to go back to be with Caleb in recovery! The new hospital is so much nicer. In this hospital they have isolation rooms so we were able to be with Caleb during recovery as before they had to recover him in the OR (as their recovery room was one big room and that doesn't work with the isolation precautions)with an OR nurse and we couldn't see him during then as we can't be in an OR. He was still asleep and we got the normal run down of what they did. We got to look at what they did and I cringed. He looked like a pin cushion and sore. Thank goodness for that block as he was really numb. We then moved to stage two recovery and we had to feed him 4 ounces via his g-tube before we could leave. He was very cranky at first, but we think that was the anesthesia as he was numb due to the block. We finally were given the OK to go home. We couldn't believe it! WE GOT TO GO HOME! We never had done that!
We got home and Caleb acted like nothing had happened in that regard. We had assumed by then that the block had worn off. Well, not so much. I found out this morning that the block must had lasted longer than what we though because the poor guys is very uncomfortable this morning. I have cancelled all his therapy for this week and I am letting him chill and recover!

So I will update as much as I can! I want to thank you all for the prayers! I got so many emails and texts yesterday regarding Caleb! We love you all!!

Thank you all so much!

God Bless you all!!

God Bless Caleb!!

Hard to Believe It's Been Two Years

2009-09-12T10:22:00.004-04:00

It is so hard to believe that it has been two years since Caleb's Thymus Transplant! Happy Transplant Anniversary Caleb, we are so proud of you! Thank you Dr. Markert for giving our child this opportunity! We will never be able to thank you enough! God Bless you and your team! The picture below is Dr. Markert and Caleb.

Below is the video I made after Caleb's transplant! Wow brings back memories. The wait for Caleb's thymus was the longest wait to that point for any patient that was at Duke. We even had one donor before the one he got that we thought was going to work and then failed the last screen test. Usually, when it passes all the other screen tests it passes the last, but not that time. So when the day FINALLY came that Caleb was gong to get his Thymus..I remember when they were pushing his crib down the hall to take him to the OR for his transplant the nurses walked along side his crib with noise makers and bubbles. It was so surreal. We are so proud of you Caleb you have battled so hard keep fighting little man!

Make video montages at www.OneTrueMedia.com

God Bless you all!!

God Bless Caleb!!

Surgery and Upcoming Flu Season

2009-09-08T10:50:00.003-04:00

Well Caleb's surgery is less than a week away and this will be 'new' for us. This is supposed to be an outpatient surgery, but that is all up to how Caleb feels after surgery and if he lets them extabate (take the breathing tube) him after the surgery. So, I had to contact his doctors today to ask them if they would mind contacting the relative departments (pre-op, post-op, etc) about his isolation precautions due to his immunosuppresion. Unfortunately, this always seems to be a battle and sometimes some doctors and nurses feel they are above these rules and regulations. So I hope if we can get some early notifications to the respective areas it will be less stressful and safer for Caleb.

I am still trying to find out where I can get a H1N1 vaccine for Caleb as it seems like this may be a little hard to get our hands on one for him. Once again, his case is so rare, that we will probably need a lot of doctors letters and phone calls made to explain why he needs this vaccine. I am starting to get nervous about this upcoming flu season as now we have this H1N1 virus out there. I try not to read or listen to any media coverage about the virus. I am very aware that flu in general is very serious and should never be overlooked it is just even more scary when your little one has immune issues. I hate flu season.

So with flu season approaching, it is starting to dawn on me that our trips out, even though there weren't many, will be very limited. This is hard as I already have cabin fever and I am sure Caleb does too! I feel bad for him as I saw how much fun he had interacting with his cousin at the beach and I know we will have to eventually halt all those visits too to protect Caleb. I just know Caleb would benefit so much if he was able to interact with other children. I know in due time...

Well, time for a bolus feed....

Also thanks for the prayers for my mom-she is home now recuperating and our little friend Eva who is now also home recuperating. Please continue to keep them and our little friend Moriah and her family in your prayers!

God Bless you all!!

God Bless Caleb!!

I'm out of my funk

2009-08-31T17:25:00.003-04:00

So...
I was talking to Duke today regarding scheduling the IgG level draw and we are going to try to get it done while he is at Children's on the 15th for surgery to avoid multiple sticks. While sending emails back and forth I inquired about the rest of Caleb's labs as I knew Dr. Markert, took the report with her over the weekend to review.

She sent me the following in an email:
'Dear Sarah,

Flow (T cell numbers) and proliferation (T cell function) both looked great. The report states that the T cells and naive T cells are stable but in fact the naive T cell numbers continue to increase. It is a beautiful essay. Caleb was better than the controls on some of the functional assays.

Yours,
Louise'

I actually had to read it over and over again. To believe what I was reading. Caleb is better than the control on some numbers?!? Which ones, I don't know, but some he is better than the control. I am a mess. I have to say I have been in one heck of a funk the past few days and this is exactly what I needed to get my out of it. `Hallelujah! Oh wow! WOW WOW WOW! I am praying his IgG level will look 'just as beautiful' !

On a side note: she does want us to get him vaccinated to H1N1 so now I have to find out about the special process to get him a vaccine in time!

Special prayers for my mom tomorrow as she has a knee replacement done and for our little friend Eva, see the link to her page at right, as she just had hip surgery today.

God Bless you all!!

God Bless Caleb!!

Immune Bloodwork Clarification

2009-08-29T14:34:00.003-04:00

So I need to clarify what is going on with the immune bloodwork as many people are asking questions and I just feel I can explain it here....

So over three months ago I got a call from Duke explaining that due to some new research they were going to stop Caleb's Immunoglobulin infusion (pseudo-immune infusion) and Bactram (medicine to prevent him from getting silent pneumonia) and see if he could maintain his IgG levels on his own (IgG: the part of the immune system that fights bugs). They indicated they would wait three months and draw the blood and check. If the bloodwork looked okay then he would stay of both meds, if not they would resume the meds.

The bloodwork was scheduled to be done at the end of July, a week short of three months since he got the two meds mentioned above. Fortunately enough, I did get any other bloodwork needed from other docs grouped with this bloodwork so he wouldn't have to be stuck more than once in such a short time as Caleb does not have any good veins left due to how many times he was accessed during his lengthy hospital stay and how damaged his veins are to the harsh antibiotics, meds, and IVs/central lines he had. This bloodwork usually takes around a month to yield any results. However, sometimes it comes back in as little as two weeks.

So before we left for the beach I did send them an email asking them if anything was back yet as even though we would thoroughly clean the beachhouse and stay there and limit outings, it is still a chance of exposure. So I just wanted to see if they had anything back yet. They indicated that they should have something within the next week or two. Well time passed and I heard nothing. This past week I was getting very anxious and sent them an email asking them if anything was back and I was told they would be coming back into town and would get back to me. Then yesterday morning I get a call from a new fellow that works for the Allergy and Immunology department with Children's Hospital in Pittsburgh. I was not able to get to the phone so she left a voice mail indicating that Duke wanted an IgG level drawn. So that was how I found out that the IgG level wasn't tested int he last batch of bloodwork, I was very upset. Then what made it even worse was as the voice mail went on the fellow said that when Duke asked for the bloodwork she said to them that we could 'just wait on drawing that level until Duke needed more bloodwork' . I was livid! Who is she to make the call on when the IgG level should be drawn. Does she know that Caleb has lived in a bubble for over THREE YEARS and this level could give him some freedom?!?! Did she not think it would be wise to call me and see what I think!?!? Are you kidding me?!? I then tried to call her back and got the wonderful automated message. So I then sent Duke an email indicating that I did not agree with Children's fellow regarding waiting on pulling an IgG level as Caleb has now been without these vital meds for over three months now. If he does need them he could be in great danger as flu season is approaching and the H1N1 virus is another extreme added concern for him. We now are waiting to see when Duke will be ready for his blood. Then we will have to wait atleast a month for the results, then we will be right into flu season, and if he needs those vital meds....one is an IV therapy and I have to get the new script, pump, etc and that cannot be done overnight.

So I hope, as you read this, you can understand why I am so upset. We are getting very close to flu season and Caleb has not had these meds in over three months and is virtually unprotected if he needs them and is not maintaining his IgG levels high enough. Also, I was hoping if we got these levels back it was going to yield some good news and we could get him out to do some fun stuff before summer ends. We know that this winter would be scary either way due his immune issues. But there are a couple weeks of summer left and it would of been nice to know if we could have been able to do some fun activities with him.

I just am having a rough time with this...

God Bless you all!!

God Bless Caleb!!

Immune Bloodwork Update

2009-08-28T14:06:00.002-04:00

So......

They didn't check the IgG level with his last set of labs....I am bummed. Really bummed. Now we wait for another blood draw to be scheduled and pray he has a vein to draw from, wait a month for results, and pray. It is even more scary as flu season is approaching and he has been without any IVIG, pseudo-immune infusion, for over three months and the other strand of flu, H1N1 could pose a great danger to him.

I am very bummed....

God Bless you all!!

God Bless Caleb!!

Surgery Scheduled

2009-08-28T11:12:00.003-04:00

Hello all, well first an update on the cold. He seems to be coughing less and the congestion isn't as bad. So we are praying that he continues to fight it!

We still have not heard from Duke regarding his Immune bloodwork! UGH

Also, as far as the wish with Make-A-Wish to tear down the house next door. They say they can't buy property. So now on to trying to decide on another wish. I did ask them what about remodeling our basement to make it a play area for Caleb. I did explain to them that the foundation would need repaired as it was slightly damaged from the flood a couple years back and can get wet and therefore, it would need to be sealed better before making it a safe play area for a immune-compromised kiddo. She said they don't do construction....OI VEY I want to pick something that he can appreciate over time, and not something that only lasts for a day or a week, but I am really struggling with another idea!

Surgery: Well Caleb is scheduled for surgery on the 15th of September to get tubes in his ears, as cleft lip and palate kiddos generally will have tubes for the rest of their lives, and his last set are out. He also needs circumcised. If all goes well they are telling us that he could go home the same day. Now we know in the past that Caleb has had issues letting them extabate, pull the breathing tube out that they put in during surgery. So we are hoping his lungs behave and that he will let them extabate and he can go home on the same day! This would be a whole new world for us....going home after a surgery. WOW!

Once Caleb recovers from this surgery, we will schedule a hearing test. All past hearing tests have been done under anesthesia by a brain stem activation. It has been explained to us that brain stem activation and a normal hearing tests can show different results. So we are praying that the results will show that Caleb's hearing is a little better than what the brain stem activation tests show. We shall see!

Special Prayer: My mom is going in for surgery on the 1st please keep her in your prayers!

God Bless you all!!

God Bless Caleb!!

Immune System, Meds, or Both?

2009-08-23T10:47:00.003-04:00

Well, this morning was the first morning since Caleb got his cold that he didn't wake up choking on phlegm. So, could he possibly be kicking this cold? If so, is it the meds, or maybe his immune system is working, or a combo of the both? I am hoping the later. We still haven't heard from Duke regarding his blood work, but if he continues to improve, I am encouraged to think that there has to be something, even something little, in regards to his immune function. It would be great to know that there is something there especially as we will be heading into another flu season in a couple months. That is the scariest time for us as the flu can pose such a great risk to the healthiest of people, so we are really praying that we will soon hear some good news regarding his immune function.

Also a couple special prayer requests. Please pray for my sister-in-laws family, Stacy Byrum, as this past week her Uncle passed away. God Bless him. Also, a little friend of ours, who I have mentioned on here before, is fighting yet another infection. This little one, Moriah http://www.momentswithmoriah.blogspot.com/, is undergoing tests to see if she has the same immune deficiency as Caleb. Please keep her and her family in your prayers also.

God Bless you all!!

God Bless Caleb!!

Cold Go Away and Feeds

2009-08-20T11:20:00.004-04:00

Well, the cold is still here. I have it also, and Bri woke up this morning not feeling the best and I am scared he is gonna come down with it too. So this is one persistent bug going around in our house. YUCK. Caleb is dealing better with his breathing treatments he gets every four hours. Kind've ironic, he used to get a treatment every four hours in the hospital when he was in there for over a year and half straight and even for awhile after he initially came home, and they didn't bother him at all. When we started the treatments for the cold, he was very mad. So it is a good thing, that he is mad and that these treatments are not second-nature to him anymore like they used to be.

As far as feeds...I am happy to report that Caleb is willing to eat more by mouth. However, he is not taking enough to maintain his weight so we are still supplementing via his feeding tube. He still does not know how to chew so we are working with that along with his SEVERE aversion still to drinking. If we were able to get him over his aversion to eat then I am keeping the faith that I can get him to drink. This is hard though as I have read through research that kids with these aversions, especially since he never has taken any liquid by mouth, that they feel like they are drowning when taking a drink. So this is going to be a battle but we can do it! It just might take time.

I still haven't heard anything from Duke regarding Caleb's IgG levels and if he maintained them on his own. It will be a month on the 22nd since the blood draw so we are really hoping we hear something soon. It is crazy that next month will be two years since Caleb's transplant! Wow what a journey....Brian and I were reminiscing the other night on the deck about the journey we have been through the past three years and all I can say is WOW. We have been through a lot. I guess when you are going through it you take it one day at a time and don't realize how much you are going through, the whirlwind of emotions: you feel so tired, scared, defeated, happy, sad, etc. I can't believe what we all have been through as a family. I am blessed to have such an amazing little boy with such determination and fight and an such an amazing, supporting, and loving husband. I love you both so very much, my boys!

Also, for those who haven't seen them yet there are pictures of our beach vacation a couple posts down the page!

Thanks for checking in!

God Bless you all!!

God Bless Caleb!!

Cold Update

2009-08-19T11:04:00.002-04:00

Well we were right. Caleb did catch a cold somewhow while we were at the beach. I took him to the doctor yesterday morning, so nice to see our local pediatrician again, she is so awesome! And she said Caleb did get a head cold that then settled into his ears and lungs, yielding a double ear infection and bronchitis. Hence, Caleb is on two anitibiotics and a prett pricey nebulizer (breathing treatment-$400 for the course of nebs) Thank goodness Dr. A had some samples to give us for the nebulizer. It was so neat to be able to take my kiddo to the doc and to bring him back home. I have never experienced that before. We will watch him closely and see if he can clear some of the junkiness by Monday. If not we will go back to the doctor and see what the next step is.

As far as the immune bloodwork, we still haven't hear anything.

I also want to appologize for not updating regularly. We just we planning for the beach and were very busy! I will get back on the schedule of updating more often.

God Bless you all!!

God Bless Caleb!!

Beach Vacation

2009-08-17T16:02:00.004-04:00

Yep you read that right, we went to the beach! I didn't want to post about the upcoming trip as I was afraid I would jinx it and we wouldn't get to go, but WE DID! Wonderful friends of ours so gracioiusly let us stay in their beach house in Georgetown, SC. Brian, Caleb, and went along with my parents and my brothers and their families. We had so much fun. Caleb got used to the water and by the end of the week if you held him by his tummy he would doggy paddle. He had one bad day at the beach due to sand in his eye. Other than that, it was absoloutely terrific and none of us could have asked for anymore. It was amazing. Thank you friends for allowing us to stay at your house, we will be forever grateful for your generosity towards our family!

Another first: we took Caleb to a restaurant for Bri's birthday, we were fortunate enough to get a corner table with noone around us and it was great. We were out in the public with our son and he ate babyfood for dinner while we were there. It was awesome. I think that was probably the best birthday gift Bri could have ever gotten.

Caleb unfortunately did develop a cold while we were there and we are heading to the doctor early in the morning as it is still not getting any better. Hopefully, we will hear something from Duke soon in regards to his recent bloodwork that will allow us to rest a little more easily.

Here are some pictures of our trip to the beach and more will come as my brothers send me the pictures they took! I have a lot of more updates but wanted to post the pictures as I know you all would appreciate them!

Photo and video editing at www.OneTrueMedia.com

God Bless you all!!

God Bless Caleb!!

Another year....Our baby is Three

2009-07-16T12:20:00.004-04:00

A little over three years ago Brian and I found out there were health concerns noticed on ultrasound with our baby boy. Our pregnancy was followed closely and we were blessed with a little baby boy on July 12th 2006. He battled for his life for over a year and a half straight in two hospitals. We were able to finally bring Caleb home a little over a year ago. It is amazing to say that last week we celebrated his third birthday. Yes our strong baby boy is now three. Three amazing years....long nights, unbelievable battles, and many lessons learned. Thank you Caleb for teaching me so much! This little boy has such an amazing will and has taught us and so many other so much. Thank you Caleb! Momma and Dadda love you so much! We are so proud of you! Happy Birthday little man!

The video montage below is the beginning of what we hope will be a lot more firsts, hence the delay between posts we have been busy and loving it!

Make video montages at www.OneTrueMedia.com

Hug your loved ones often and tell them you love them. Take nothing for granted and enjoy all of the little things!

God Bless you all!!

God Bless Caleb!!

Fun Times & New Items

2009-06-11T10:18:00.005-04:00

Kenny Chesney Weekend
Wow! So we had a taste of 'normalcy' and loved it! We lucked out and got an early check in for the hotel for the Kenny Chesney concert. I actually found out the night before that we were granted an early check in so I told everyone we were leaving early 9 a.m. sharp and thank goodness because the traffic, as we could see from our hotel window, got REALLY bad about a half hour after we checked in. So it went well, we covered Caleb up and got him up to the room, I then sprayed the room down with Lysol and all our bags that had just been lugged through the hotel. Then we all relaxed and settled into the room. Who knew a hotel room could be so exciting. It was awesome. We had an AWESOME view of the point so that was great for Caleb that he could see stuff from the hotel window.
My Mom and Dad were great. They were great at wiping stuff down, they are just as used to it as Brian and I. Dad took Caleb for two walks down to the point too while we were at the concert so Caleb could see the boats and celebrations down by the Point. Dad was great he took antibac and didn't let people get close to Caleb. Thanks Mom and Dad. So Bri and I were off to tailgate to see some friends we haven't seen in years! We love you guys! We missed you so much! We finally got there and it was so much fun! After tailgating it was time to go in! OH MY GOSH! It was awesome!
We had soooooooo much fun. The lineup was amazing! The concert went so fast! Already excited for next year!
On the way home we decided to stop at a Sonic, since we don't have one around here, and eat lunch. This is also another big step as we took Caleb out of the car and sat at a table. We sat at a table were there was noone else around and wiped it down so we weren't 'contaminated' and then we ordered lunch. Another amazing time, yes eating lunch can be amazing. The reason why it was so awesome was, after we were done eating Brian and I ordered sundaes. We both hoped that maybe if I offered Caleb some ice cream, maybe he would take some and sure enough he did. He ate half the sundae, no joke! Yes, I got choked up, but who wouldn't right?!? So great! Great ending to an awesome weekend!

Immune System
The other day we got a phone call from Dr. Markert's head nurse, Stephanie. She wanted to let us know that some of the 'protocol' has changed. Just to remind everyone, the transplant Caleb got is still experimental, so the 'protocol' (criteria that is stipulated in the study to be handed over to the FDA periodically until the transplant is accepted as an approved non-experimental procedure) can change based upon new research. The bone marrow unit, which is a unit that conducts a lot of research on immunosuppression, just came out with some new findings. To make a long story short, based upon some of their new findings, they have changed some of their protocol. Once some of Dr. Markert's kiddos reach certain levels post-transplant, the bone marrow unit indicated that some meds should be temporarily discontinued to see how the immune system does on its own. These meds are bactram (the med that is taken to prevent silent pneumonia) and Immunoglobulins (the infusion that I give Caleb weekly for his 'fake' immune system that maintains his IgG levels). Then two months after these meds are temprarily discontinued blood levels will be drawn to see if these kids can't maintain their IgG levels (their immune levels that can fight bugs). If the IgG levels don't stay up, the Immunoglobulin and Bactram will be restarted. Well...Caleb was one of those kiddos that was picked to stop the meds, based upon some of his immune levels in relation with the new research. So...yes I am nervous, but I am anxious to see what his levels show in two months. Hopefully his immune system can maintain its levels without the help of the Immunoglobulin infusion that I gave him weekly. During my conversation with Dr. Markert's nurse, I did ask if his last labs came back and she said they did, Caleb's immune system yielded a 15 fold response. The one before that was 13 fold, so we are a little better. Their protocol would like each child to yield a 20 fold response, but once again, this is 'protocol' and Dr. Markert admitted that this level may be decreased to as she is not sure if 20 is too high of an expectation for every child to hit. I think she will get a better idea of what is a good response number when she sees how these kiddos that she has picked to temporarily discontinue these meds due without the meds for two months and where their response was at that time. While I also talked to Dr. Markerts nurse, Stephanie, I asked her if we could take Caleb certain places, and she said yes...just not places where there are a lot of people and where people would be hugging and kissing him. She indicated his baptism and church should wait, which is tough as we miss our church family! One more step towards normalcy?!?! We'll see...We are praying that Caleb's immune system can maintain its own levels over the next two months. This is a HUGE test! Hopefully his immune system passes!

Back to Dr. Archbald
So we are back to seeing Dr. Archbald. It was soooooo nice to see her and all the nurses! We got caught up on everything and she got to see Caleb for the first time, since he was about four months old when she wondered if he had an immune issue. She told us back then that he needed to go to Children's to be tested and she was right! So we finally got to see her again and it was sooooo nice! She noticed that his ears are pretty full of wax so she wants him to go to see ENT to get the cleaned and that after that she wants him to get a hearing test done as she is not convinced, like Brian and I, that he is as deaf as what we were told. The previous two hearing tests were done under anesthesia and by brain stem activiation. This would be the first 'real' hearing test. Also, while we go see ENT we are going to try to see Orthopedics (to get his hips checked) and Urology both of these specialties haven't seen them in awhile and she and Brian and I want to get a check-up and then hopefully, just maybe, not have to see some of these specialties in a very long time. We also made a group decision to take one more of Caleb's boluses away during the day to see if that will make him more hungry, so we can try to get him to eat more by mouth. It was so nice to talk about other normal things, potty training, time-out, etc., with Dr. Archbald. We all laughed as Brian and I know about IV's and a lot of extreme medical stuff, but some of the typical stuff we didn't know and we got to ask Dr. Archbald. It was so great to see her and know now that if need be we can call her and go see her than rather having to go to Pittsburgh every time. We missed you Dr. Archbald.

Well that is it for now as far as updates. I do have more, but this post is long enough. So check back soon!

God Bless you all!!

God Bless Caleb!!

Kenny Chesney and a Hotel Stay

2009-06-04T12:06:00.002-04:00

For years Brian and I have gone to see Kenny Chesney when he comes to Pittsburgh. Of course, when Caleb was sick and in the hospital we didn't go, but we are planning on going this year. It is an all day concert on Saturday and Brian and I are going to try to go see as much as we can. Needless to say, it is not like we can leave Caleb at home in Wheeling, an hour away, with a babysitter as there is a lot to take care of and we would feel safer if he was closer to us while we were at the concert. So we asked Caleb's transplant/immunology doctor, Dr. Markert, if she thought it would be safe for him to stay in a hotel, so he could be near to us while we are at the concert. She said it would be fine for him to stay in a hotel. So we are very excited! We were originally thinking about going Friday and Saturday, but with the limited vacancies and the expense of the available hotels, we decided to go up early Saturday morning and pray we can get an early check-in. Of course, I will go into the room before he goes in and spray it down with Lysol so it is 'clean' and then we will take our disinfecting wipes to wipe stuff down. Hopefully, the hotel will allow us to do an early check in so I can get the room 'cleaned' and him and my parents settled before going to the concert. My mom and dad are going to babysit while we are at the concert. I have to admit that I am a bit nervous as this is the first time he is staying somewhere other than in our home. But, I will feel more at ease knowing he is closer in case of any emergencies. We will try to stay 'clean' from the point we leave home until we check in and then Brian and I will shower when we come back to the hotel from the concert to disinfect ourselves, just like we do when we leave the house. As always, we will keep Caleb protected in transit via his rain cover bubble we put over his stroller. He doesn't cooperate with the wearing of a mask, so the rain cover works well also. This will definitely be a whole new experience, and probably nerve-wracking, until we get him settled and in the room. But maybe this can be one smaller step towards normal.
So right now I am in the middle of packing. I already have one suitcase for medical supplies only...wow!
I will let you all know how the experience goes ...

Thanks for checking in!

God Bless you all!!

God Bless Caleb!!

Pool, Friends, and Family

2009-06-01T11:10:00.010-04:00

Hello all!

So a couple updates.

Caleb is amazing...have I said that before?!?! HA HA He is such a tough little guy.

First updates on some therapy:
So I am able to get Caleb to eat almost a half a jar at least once a day. It is not easy though. He is very timid when I bring the spoon to his mouth for the first couple bites. Then finally he seems to get into a rhythm and wants to eat! So I hope that that continues!

Walking: well I decided the other day to take Caleb outside to see if that would help in anyway with his distaste for his walking therapy. I put him on the sidewalk and held his hands and low and behold he started walking and far. He walked down to the end of our street and back and not just once a couple times. I was amazed. One of the cutest moment of the walk is when our friends who love Caleb just as much as we do drove by they would all say 'Good job Caleb' or 'You can do it!" So sweet! It is so wonderful to continually be surrounded by such wonderful people and friends.

Pool
Well Caleb had his first dip in the pool the other day and he loved it. The first day we tried it didn't go so well and he did not want to get it. So I tried the next day and he loved it. He also loves his daddy's hat more than his. So, I think we are going to have to get Brian a new hat!

Friends
Brian and I had the chance to go out last week and be surrounded by some more sweet and wonderful friends of ours. We all went to a local restaurant to have dinner, drinks, play pool, and watch the Penguins. We had so much fun! Thank guys it was so great to see you again. Hopefully, it won't be such a long span in between visits next time.
Family
So Brian and I have decided that we are going to start trying to do some 'normal' things, leaving the house when safe and doing things with Caleb, without putting Caleb at risk. So we tried a picnic! I took Caleb to my Mom and Dad's house on Memorial Day (Unfortunately Brian had to work so he couldn't go) so he could finally be around all his cousins and Aunts and Uncles. Caleb has not seen any of them since he was first born. So this was an awesome day for us! Truly amazing. It was so cute to see how Caleb watched his cousins Hunter, Casey, and Sam play with one another. They were so great too at maintaining a safe distance from Caleb! Thanks guys! AHHH to be with my whole family....my parents, my grandma, my brothers and their wives, and my niece and nephews....wow words can't describe. I love you all so very much and have missed being a 'part' of the family. I am so glad that we did it and thank you all for being so great regarding Caleb's safety. Next time, I will try to relax more! I cannot wait for the day when I get pictures of you all holding Caleb and being right next to him.

Photo and video editing at www.OneTrueMedia.com

Come on bloodwork show good results so we can do more 'normal' things!

Thank you all for checking in on us!!

God Bless you all!!

God Bless Caleb!!

Come on Immune System....WORK PLEASE

2009-05-21T10:20:00.002-04:00

Okay well today the fourth set of blood work was taken to test Caleb's immune system.

This round of bloodwork was taken in a little different manner than in the past. In the past, Caleb had a central line (a IV line that is more permanent than the general IV you would get for a short admission in the hospital) and I would draw the blood and then my dad would drive to Children's Hospital in Pittsburgh where it then would be shipped off to Duke. Well, as you all remember Caleb's central line was removed awhile ago so we had to make plans this time for Caleb to get his blood drawn and to make it even more 'new' for us we were going to try to get it drawn at our local hospital where they are not familiar with our little 'bubble boy' Caleb. This was very nerve-wracking for me for many reasons this morning. One, I know Caleb has pretty much no veins left for them to draw from as all his veins have been damaged from all the IV's and sticks he has endured through his lengthy hospital stays and two, that this hospital is not familiar with our immuno-suppressed little man and I am not sure how they were going to be regarding the isolation precautions and accommodating to our special situation. I am happy to report that both my apprehensions were put at ease. From the point of registration to the time we left, the personnel were fantastic and accommodating to our needs. Of course, we were starred at by other patrons because Caleb is kept under a rain cover in his stroller to protect him. He doesn't tolerate wearing a mask anymore, he actually rips it off. But once again, the staff was superb. My dad went with me, as Brian had to work, and he was the 'dirty/contaminated' person, so he handled all the paperwork and signing of papers so I can hold Caleb and tend to his needs. After we registered, Dad went and asked if we could wait outside until they were ready to take Caleb's blood. They were fantastic, they came and got us and took us directly back into a room when they were ready. The techs were amazing. They got blood from Caleb on the first stick and wore all the proper gear (masks, gowns, and gloves). If anyone reads this who knows anyone at Wheeling Hospital, please spread the word on how much I appreciate how fantastic they were to Caleb and accommodating to his situation.
So my dad is on his way to Children's Hospital in Pittsburgh to drop of the blood were it will then be packaged and shipped to Duke. Thanks Dad for all your help today, you were a HUGE help. I love you!
We are praying really really really hard that the bloodwork shows his T-cells are functioning and his immune system is functioning at a level at which maybe we could do some 'normal' activities with Caleb and have some confidence in his ability to fight off bugs and viruses! Now the waiting game begins....one long month of waiting...come on immune system please work!

God Bless you all!!

God Bless Caleb!!

Growing Lil' Boy

2009-05-19T10:26:00.009-04:00

Well the title of this post says it all! Our little boy is growing up. So many updates:

Well where do I start...

Clinic Appointments:
Caleb finally got to see some of his doctors at Children's Hospital in Pittsburgh for much needed clinic appointments. Once again, we try to wait until the end of cold and flu season to hopefully limit the possibility of exposing him to nasty bugs. Yes, bugs and viruses will always be around, but if we can take him when the threat is a little less that is better for him. We got to see the new Children's Hospital. When we were driving into the parking garage, Brian and I gave Caleb a little speech and told him we didn't want any overnight stays at this hospital, just clinic appointments. The hospital is gorgeous. I am just really hoping we never see an inpatient room, we have seen enough hospital rooms.

So the first doctor we saw was Dr. Frangiskakis, pictured at right with Caleb. This is Caleb's acting Pediatrician. She has watched over Caleb from his first admission to CHP until now. She was so happy to see him. She said he didn't look like a baby anymore, that he looks like a little boy. We went through his development with her and the big discussion was his feeding orally or the lack thereof. She, Brian, and myself agreed that if Caleb does not improve with his feeding by the next time the immune tests come back, with hopefully good results, that we are going to do an in patient feeding clinic with him. The rest of the appointment went well. We noticed an ear infection which he was put on drops for. The unfortunate news is that Dr. Frangiskakis is leaving CHP to go back to her home state. We will miss her so much, she was so wonderful to Caleb and our family. We stayed with Dr. Frangiskakis as his PCP as she was acting as his 'quarterback doctor' - she kept all his specialist docs in Pittsburgh involved and updated as well as communicated with Duke. However, there is no time like the present to get Caleb back to his primary PCP here in Wheeling. We are ecstatic as this is such a big milestone for Caleb.

The next following week we saw was the Cardiologist. They haven't seen Caleb since before he went to Duke. The original plan that the CHP Cardiologists would do his open-heart surgery to fix his ASD's and his Triatrium when we got home from Duke. But that plan changed, as you all know, when Caleb went into heart failure when he was very sick at Duke. So, Brian and I were expecting a very long appointment. Brian and I were both very nervous about this appointment as Caleb has been having some lower heart rates. Surprisingly, they did an EKG and listened to him and they said that based upon what they heard they did not believe the risk of doing an ECHO, because of his immunosuppression and what he may be exposed to, was needed because they said he sounded great. The doctor indicated the lower heart rate is what a 'normal' heart should do. Yes his may be lower than others, but as long as he is perfusing well (blood is circulating well into his extremities) and he is not changing colors or passing out then it is all good. Then the bigger news, we don't have to see Cardiology for a YEAR! We were in shock. Really....we were expecting to be handed slips of this test and that test and to come back in two weeks. But nope, we don't have to see them for a year. Way to go Caleb!

So since we had some extra time, we thought we would stop by and see our friends at Cleft-Craniofacial to say hello! They were always so great to all of us. We were shocked when they said to go ahead and bring Caleb in and they would just go ahead and see him to (he was scheduled for a clinic appointment for the end of June). They are so great, they know how far away we live so they slid him into their schedule to see him for his repair check-up. His plastic surgeon, Dr. Losee, said Caleb's scar looks great. We asked him about a white spot on Caleb's gum-line. Dr. Losee indicated that is the scar from the palate repair and not to worry. He said the repair looked good and by what Caleb is trying to verbalize now he believes the palate repair will work well in regards to speech! WOOHOO What a day!

Feeding Update: I realized the other day that the current approach to feeding wasn't working. So I tried another approach and I am so very happy to report that I am able to get Caleb to eat about a half a jar of feed about twice a day. Never thought that day would happen. The bigger shocker was one night when I was feeding him at dinner, he looked thirsty, so I handed him a sippy cup, and he DRANK FROM IT! Brian and I were ecstatic to say the least. I hope that Caleb continues to feed well. The first bite always seems to be the toughest, but then he does better with every bite after that.

Girls Day:
I finally, after three long years, got to spend some quality time with my two great friends Jen Straub (white shirt) and Jess Tuschong (white and brown shirt). Most of you are familiar with these two blessings also. As Jen sends out email updates on Caleb and has updated this blog for me when I couldn't. Jess, created the page about Caleb on Facebook which kept hundreds of people updated also. These two girls have been awesome to Brian, Caleb, and myself throughout the years. They have done so much for us and they continue to do so. I was pampered by the two of them by a manicure and pedicure and lunch! It was so nice to see them. When we were hugging to say goodbye I didn't want to let them go. I love you both so very much thank you for a wonderful day! I had such a great time.

The following week, I was pampered by another friend, Alana, and got my hair done. Thanks Alana it looks great!

I love you girls! Thanks for the pampering it was so nice! Love you!

Zoo:
Okay so are you ready for the biggest update?!? Brian and I last week had enough of being shut-in and decided to take Caleb to the Oglebay Zoo. We were hoping that there wouldn't be many kids there as it was still pretty early in the summer and we lucked out. There was noone there. We were able to take the cover off the stroller, that we usually use to keep him in a 'bubble'. It was so much fun. When we walked out into the zoo. I almost broke down. But I held it together. We had the zoo to ourselves and it was probably the best time we have had in years. A highlight of the visit was we stopped at the concession stand to get a drink (which is a big step too because even this is a germ exposure possibility, but we wiped everything down) and the lady that was working the concession stand asked how old Caleb was and we told her almost three then she said 'what a healthy looking three year old'. She had no idea what those words meant, wow our child looked healthy! The only part of the zoo, we really couldn't do was the train ride, as there is no way to make that a 'clean/contamination free' experience. But we had a blast. We wanna go back, but we know that we lucked out that it was not that crowded. It would be nice if we could do more things like that for him. What a day! So much fun! We didn't want to come back home!

Make an on-line slide show at www.OneTrueMedia.com

Thanks for checking in on us, sorry for the delay in posts, as you can see we have been very busy!
God Bless you all!!

God Bless Caleb!!

Meetings, Meetings, Meetings

2009-04-25T21:56:00.002-04:00

Well we have had a lot of meetings lately.

Thursday I had a conference call early in the morning with Birth To Three and Ohio County Schools discussing the transition from Birth to Three into the Ohio County School System. They have agreed to provide a home bound teacher for whatever services that they deem necessary when they come in to do his testing in June.

The next meeting was for a psych evaluation, as it is needed for us to apply for federal assistance called Waiver for Caleb. Waiver, is a very hard system to get into. Just like any other assistance for special needs kiddos, the paper work is ridiculous and has to come from many different people. There is usually a waiting list and specific criteria that have to be met. The psychologist came to the home on Thursday, and in her opinion, she believes Caleb should qualify for Waiver. Now we will just have to wait to see if the State agrees.

Last and definitely not least was our meeting with Make-A-Wish Foundation. The lady that came to the home was so nice. So we went for it, we asked for the foreclosed house next door to be torn down so we can have a yard for him, get him outside so he is not in the house all the time, and put different 'therapy stations' in our yard over time for him. She really wasn't sure if they would go for this and asked us if we had a second wish, just in case. We couldn't think of one....it is so hard to pick a wish for a child that can't leave the home. So she said she was going to ask the 'higher ups' and get back to us! So we will see! I will keep you all updated.

Thanks for checking in on us!!

God Bless you all!!

God Bless Caleb!!

All I can say is 'Wow'

2009-04-20T15:01:00.001-04:00

Well I was speechless the other day and once again was amazed and so proud of my little boy.

I was eating some popcorn and as always, I let Caleb touch the food I am eating if he wants. So he did. Then what happened next was amazing. So when I was eating my popcorn, Caleb stuck his hands in the bowl and grabbed some. That alone was a feat in itself as it is a very weird texture and the fact that he was even touching it was great. He then held a piece in his hand, crawled to Saba, and threw it to her. But wait it gets better. He did the same thing a couple times, and then....he looked at me, as by this time I was standing up with the bowl in hand, said 'aba (which is Saba our wonderful dog), then signed 'eat' (assisted with the verbal noise of eating) and then signed 'more'. I wondered if he was trying to let me know he wanted to give Saba more to eat. So, I leaned down and sure enough he put his hand in the bowl and then went over and fed her! I couldn't believe it! My baby just signed a sentence to me telling me what he wanted! So awesome!

Way to go my lil' man. We are so proud of you. You are amazing!

Thank you all for checking in on us again and for enjoying moments like these with us!

God Bless you all!!

God Bless Caleb!!

Meetings, Walker, and a New Trick

2009-04-16T09:12:00.003-04:00

Meetings
Our meeting with Birth To Three: we set new goals and discussed the need for an educator to start coming in from Ohio County Schools when Caleb is of pre-school age and transitions out of Birth To Three. First the goals were reviewed as this is a main part of Birth to Three. The therapists set goals with the parents of what you hope can be covered over a certain amount of time. Ours didn't change much, but there were slight improvements. We did make some strides since our last set of goals. He now tolerates a plate of food in his area and he is now crawling! So those milestones may seem small but they are big strides for him. Some of our new goals were: 1. to get Caleb to willingly accept food and drink in his mouth. 2. to be able to communicate better-continue to build his verbal and nonverbal communication skills 3. to try to get Caleb to go up and down steps 4. to try to get Caleb to walk, using whatever equipment (i.e. a walker) that is necessary. The goals are there fore the parents to, if needed, ask the therapists what they suggest to do to try to achieve those goals. So I pray that we can do what we can to get him to start achieve if not achieve those goals.
Our meeting with Make a Wish Foundation: Unfortunately, this meeting had to be re-scheduled. We were really bummed! The representative called about an hour before the meeting and said she had to re-schedule. So we are now on for the 23rd. I did research the possibility of a sensory room for Caleb. It does seem like a great idea for kiddos with sensory issues. But I think, and Caleb's therapist also agree, that this would be way to much for Caleb and scary for him as his sensory issues are pretty bad. So I think we are going to, thanks to a lot of our friends encouraging us to try, ask to see if they would be willing to tear down the foreclosed house next door. We do not have much of a yard and since Caleb is not able to leave the home due to his isolation precautions, we though the yard would be the best thing for him. He could get outside and do different activities. Our goal would be to put sensory 'stations' in our yard. I would also like to see if we could get the yard fenced in as we live on a very busy street and Caleb is deaf in one ear and has significant hearing loss in the other ear. So for safety reasons, that would be awesome. I am not sure if they will go for this or not, but it is so worth a shot. This would be awesome for him if we could get him out of this house when the weather is warmer and get him to play, but be doing therapy at the same time. We will see! I am really really praying they grant that as his wish!
Walker
Caleb's PT was able to come yesterday and he modified Caleb's walker. Caleb seemed to be a little more accepting of the modifications and not so scared of it from a sensory perspective. But as we have seen before, he can become scared very quickly. So I am trying to think of ways to decorate the walker to make it less 'scary' from a sensory perspective for him. I hope to updating soon that he is using it and loving it. Fingers crossed! We still also aren't sure if this is the best walker for Caleb! There are many walkers, so we are going to try this one a little longer and if it doesn't work, we will try a different one.
New Trick:
We put Caleb on the stairs yesterday to see what he would do. Well, for those of you who saw the post regarding the big boy bed, one of his MANY sensory issues effected his 'touching' the bed. Same happened with the stairs. We placed him on the steps to see if he would crawl up the steps. He could not stand his belly touching the stairs. He flipped! He shut his eyes and cried. So we turned him around and let him sit on the step. Then we helped him go into a standing position a few times from the sitting position as we are trying to teach Caleb how to squat also and this exercise will build those muscles. He did great, he required little help to get to the standing position. Then later on that day, I was so excited, I took him back to the steps to see if he would do it again and he did. Then....he was getting so excited about it...he did it on his own! It was awesome!

Thank you all for checking in on us again!!

God Bless you all!!

God Bless Caleb!!

Caleb Paul Hlebiczki

Kiwanis Award Winner

Short update

What a long day!

Tests.

What is going on with my lil' man? *UPDATED*

A Very Sweet Moment I Caught this Morning

Never a Dull Moment!

New Eye Patch

Caleb Hlebiczki Medical Fund

The Wheels on the Bus

Neurosurgery appointment

A cold

On Our Toes

A Couple Updates

A Little Scare

OOPS

No words..just upsetting

Eye Appointment Clarification and Just a Note

More Talking, Feeding Sissy, and an Eye Infection

Easter Bunny and Welcome Sissy Camryn to Blogger

Social Security Waiver and Verbalization

Eye Appointment

Darn Winter Germs

GI Bug

One to Five

SSI and RSV

RSV

SSI should be ashamed and embarassed

Insurance

SSI Update and Medical Fund Changes

SSI Update

Disgusted

Happy New Year

Sweet Saba

A lot Going on and A family in Need UPDATED

Still Waiting

Pumpkin Patch (UPDATED)

One of those tearful days

Another infection?

Bumps and Bruises

Where to Begin..

Happy Birthday my Wonderful Four Year Old

Beach Vacation

Try to Moderate

Decisions....Decisions...

A Little Privacy Please

Movin' and a Groovin'

Another Post Op Update

Surgery Update

Therapy Evaluations and G-tube update

Big Boy Room and More Changes

Clinic Appointments

Bump in the Road

Bottoms Up!

Hello again...

Once again sorry for the delay in posts

We had a great Christmas and New Year

Cookie Day

Thanks for the ideas

Advice and Suggestions Much Needed!

Second H1N1 shot but no second round immunizations

An outing leads to some frustration..

Vaccinations, Train, Ornaments

Thanksgiving

I'm Alive and Well

Shot 1

Finally

Still waiting

We had one...and then...

H1N1 shot update

Does it really have to be this hard...

Please Pray for this Little Boy Alex and His Family

Growth Spurt?

Fives

Two Blog Posts in One Day......

Another Milestone

IgG Level is Back

My Big Boy **Updated**

Waiting game

What is going on with my lil' man? UPDATED

My Big Boy Updated

Immune Bloodwork Update