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"

Wednesday, December 01, 2010

Still Waiting

Well we are still waiting on a decision to our appeal for Caleb's social security disability payments. I have called several times, and they do not have any updates regarding the decision.

Caleb continues to do well in school and with his therapists. He is talking and walking more. I am hoping he continues to improve in both areas! If we could really get him talking OR signing more that would be great. I have been really urging him to talk or sign more and he is picking it up very quickly, and sometimes uses signs or words on his own without prompting. He has also started back to his outpatient therapy as well and his therapists have noticed a difference in him since his start of school. They think he seems like a different kiddo, music to my ears that they think he is growing socially.

He is going to need another surgery, I think this around surgery number thirty something. The hole left from his g-tube did not heal so he is going to require surgery to close it. Caleb has always had the hardest time recovering from stomach surgeries, he even recovered from his open heart better than when his t-tube was placed. I am really hoping that this surgery recovery is not hard on him. I am so nervous about another surgery. I don't understand, now looking back on it, how we mentally handled Caleb have so many surgeries close together. He is so tough and I am so proud of him. We have also found out that his tear duct in his right eye is blocked and will need a stint placed surgically after the duct is blown out. After three months they will remove the stint in the office, YIKES. So the surgeons have been so wonderful to agree to share the OR to get these to surgeries done under one GA (general anesthesia) exposure. Thank goodness, he has had so many surgeries (somewhere in the thirties) that one less exposure to general anesthesia is good!

Caleb is really beginning to try to interact with his sister, Camryn. He shows her his toys and I even got him to give her a kiss. We have been blessed with two wonderful children.

I also have to say how proud of my husband, Brian, I am. He has worked hard at AT&T for the last couple years and recently interviewed for a sales position with Lamar and was hired. We are so proud of you Brian! Congratulations.

Also, a special prayer for a friend of ours who passed away three years ago from Leukemia. Samantha Welch was a strong and beautiful 17 year old that fought so hard. We met her and her mother while we were at Duke Hospital for Caleb's transplant. We became very close with the both of them. Samantha always drew pictures for Caleb that we hung all over his room, and when she would do her 'laps' around the floor. Should would always knock on the door and talk through the glass door to Caybay as she couldn't come into his room because of his isolation issues. We visited her room often though and became very close with her and her momma Faith. We all believe Sam is one of Caleb's guardian angels. Sam we love you and miss you so very much. Faith we think of you often and miss you too! God Bless you Sam and Faith!

Thank you all for stopping by and checking in on us!

God Bless you all!!

God Bless Caleb and Camryn!!


Neurotic Atty said...

I know you're frustrated over this SSD thing, and I don't blame you one bit. It's ridiculously frustrating, but have faith. When I was a law student working in the legal clinic, I had a client who was very much like Caleb in the sense that she was GENUINELY in need of and deserving of SSD benefits (as opposed to another client who was simply trying to work the system!), but was getting the run around. It literally took years (I know you hate to hear that), but she DID get satisfaction. The wheels grind slowly at the Social Security Administration, but you have to be patient and have faith that it will work out. EVENTUALLY, they WILL get it right. I know the in-between time is hard, but I hate to think that you would lose a minute of enjoyment of the holidays with your babies over this crazy bureaucratic BS. Hang in there, and I will be praying for this to pass quickly!

Britta said...

You do not know me but my name is Britta. My son had CHARGE syndrome but died at 6 weeks of age. I follow Mighty Maxs blog and came across your page that way. I hope this doesnt come across as strange to email you about his little boy Seth B. Petreikis but when I read it the first thing I thought of was your family.

I just came across this article about a young boy who has DiGeorge Syndrome and his family is in need of money for the surgery since their states ins wont pay for the surgery. Anyway, I just wanted to pass this along in case you had any advice to share with them. I know from reading your blog for years that you have fought long and hard for Caleb. I am sorry that you have had to go through that and maybe some of your knowledge could help this family? Here is the article.I am sure your doctor at Duke could put you in touch with this family.

I hope your family is doing well.

Sarah said...

Thanks Atty, we are still waiting. I keep making phone calls and they keep sending me more bills, which I then add those on to the total. I may have to get an attorney soon.
Britta, I wrote the governor, along with many other people and it seems like he listened as they overturned the decision and now he will be getting the transplant. YEA!