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!!
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