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"

Monday, December 08, 2008

Blood Tests Scheduled, Updates, and Media Coverage

So we have gotten word that we are going to draw blood on the 16th of this month to check to see if Caleb's T-cells have responded to the third tetanus shot. We are hoping and praying that the third time is a charm! Then of course, we will have to wait for around three weeks to see what the blood work results. It would be great, if by some chance, the results could come back showing a response before Christmas, but, we know that we will probably have to wait until after the 1st of the year for the results.

As I said in the previous post, Caleb continuous to become more mobile. He has definitely started to crawl more and has now even started to crawl faster. He has tried to pull up to stand and seems like he tries to do this more every day. We still are fighting the sensory and feeding issues. Tonight at dinner, I was able to get about 7 bites of ham (stage 1 food) in his mouth and he probably cleared (swallowed without gagging) about 4 bites. We have found out that Caleb definitely likes sour tastes more than sweet, so we do therapy (try to get some of the sour salt off the gummy in his mouth )with Sour Patch kids to try to get him to stimulate him orally. For all that know my sweet tooth, I love Sour Patch Kids, so when that therapy time comes around we have a blast (probably me more than him though :) ) We are still trying to communicate better with Caleb. We believe what is going to work best for him is to sign and speak. We have been able to get him to say 'ho ho ho' for the Holidays and it is so cute! He also has started his own sign to let me know when he want me to pat his back. He will pat his chest and let me know to pat his chest. I then tried to see what he would do if I was not looking when he was trying to let me know to pat his chest. He then amazed me by grabbing my arm to get my attention, then started patting his chest. I will try to catch some of this on video so hopefully I can post it. He amazes me every day!

We still cannot get insurance to cover Caleb's Synagis shot (the shot that would protect him for a life threatening illness). The insurance company, after repeated appeals and wonderful letters from all of Caleb's doctors states they do not have to provide the shot because their is 'not enough medical documentation in regards to these kiddos and their syndrome and the need for Synagis'. Their reasoning is completely negligent and I cannot believe they use that as their reasoning. We continue to explain to them that of course there is not a lot of documentation because these kids with DiGeorge are very very rare. Caleb was the 50th in the world, so of course there is not going to be a lot of medical documentation in the FDA's records. Also, the treatment of this syndrome, the transplant, is not even been accepted by the FDA yet despite what Dr. Markert's research has shown. I don't know who else we can contact to help us on our behalf to try to get them to understand the need for this shot. Caleb's doctors have explained the risk of him not getting the shot and if that doesn't provoke them to get him the shot I don't know what will.

On a lighter note, the insurance HAS finally approved and upped our nursing hour coverage! We haven't gotten the legal copy of the approval in the mail, but we have been led to believe that he will get at least (maybe more!) of 12 hours of nursing coverage a day, seven days a week! I will confirm with everyone when we get the official copy in the mail.

Also, not that this blog has detailed Caleb's journey enough, but I have started to write 'Caleb's Story'. I just feel this would be a great keepsake for us, Caleb, and anyone else who would like to read about our remarkable little boy. It is definitely going to take a lot longer than I thought and is definitely very emotional to re-live most of the last two years but I think it is very important for Caleb to have in the future.

Brian and I are also considering meeting with the local media to do a story on Caleb, as we have had some initial contacts regarding Caleb and his journey. Not only to show everyone in the Valley what an amazing little boy is here in the area, but, how wonderful others have been to our family over the last two years. Not only have we been amazed by our son, but we have been so amazed by everyone's generosity, caring, and support for our family.

God Bless you all!!

God Bless Caleb!!

No comments: