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!!