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!!