Ahhh Music to My Ears

Hi all, I just wanted to post something great that just happened.  So Caleb does know a lot of signs and words. One of which is momma.   But whenever he wants me he always says 'hi', even if I am not looking, to get my attention.  Just five minutes ago, I was working on some of my stuff for 31 on the computer and I  heard him yelling 'momma, momma' from the other room.  I looked in the room and he was saying momma and signing it, and he wanted me!  He has never done this!  I was so happy that he understands this is the way to get my attention.  I hope he continues to do so!  It was so great to hear my little boy yell for his momma.  WAY TO GO CALEB!!

God Bless you all!!

God Bless Caleb and Camryn!!

SSI meeting

I really can't give the summary of the meeting right now. It went as we thought it would. Pretty much they made a mistake, it's evident-to them and us, but we need physical proof of us dropping of paystubs, that they lost, which we don't have like a receipt or anything. So. That's it.
This is probably the most frustrated and upset I have been in awhile. I'll write more later. Just don't want to rehash it, as I get upset and mad. I really think, and I know I say this a lot lately, but we just need to catch a break. Seriously.

God Bless you all!!

God Bless Caleb and Camryn!!

PLEASE Any Help Would Be Great PLEASE

HI all,
So the SSI overpayment saga continues.  We recently received a letter from the SSI office in response to a inquiry placed on our behalf.  SSI's letter was full of untruths and I can't believe how much they have lied.  It is pretty much a letter than does not have one ounce of truth in it.  I am sick to my stomach about it.  They aren't even aware as to where our case stands, i.e. how many appeals we have filed.  They want me and Brian to come in on Friday for what I feel will be a CYA session for them.  I am really sick of being screwed with by this office.  If ANYONE out there knows of an attorney that can be by our side at this meeting we would greatly appreciate any help!  PLEASE!  We are being asked to pay back A LOT of money that is not our error!  Again, PLEASE, we would appreciate any help.  It makes me sad that I am begging for help but I feel like Brian and I can't help our case as much as maybe someone who knows the law and who can see how this has been so mishandled!

God Bless you all!!

God Bless Caleb and Camryn!!

Thank You Friends

I just wanted to again, extend a thank you to you all for your continued support to our family!

Thank you for your support to the Caleb Hlebiczki Medical Fund and to my Thirty-One Business.  You all have been so great to us and continue to do so.  I thank you from the bottom of my heart.  I am overcome with emotion and the support system you all have provided our family.  Thank you all!  You all have carried us through some tough times.

God Bless you all!!

God Bless Caleb and Camryn!!

Kiwanis Award Winner

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

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!

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.

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*

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

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

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?

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

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..

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

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

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

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...

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

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'

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!!