Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"

Thursday, January 27, 2011

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!!

Tuesday, January 25, 2011


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!!

Wednesday, January 19, 2011

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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