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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