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"

Tuesday, September 30, 2008

So Amazing!!

Okay so it's time to brag! Brian, Caleb, and I were hanging out on Sunday and Brian and I were sitting there talking when we both noticed Caleb started to CRAWL!! We were in shock! We didn't yell while he was doing it, as one of his many sensory issues is an aversion to loud noises. So when he does something like that you have to be careful how you react - no loud applause or YAYS, but he knew it was something great because when he was done he sat up and gave Bri and I the biggest smile. It was awesome, we both got really emotional. We knew someday that he could possibly crawl, but didn't think he was going to do it this soon. He hasn't done it again since, but we now know he can do it!

Also, Caleb got his tetanus shot on Thursday. Poor nurse Angeline - sometimes I think it is harder on the nurse! He also had the last dose of his Immunosuppresion medicine, Cyclosporine, last Wednesday. Dr. Markert and I were emailing back and forth last week and she is wondering if the fact that he was still on the Cyclosporine when he got his last Tetanus shot may have not allowed his body to react well from the shot. She said that since he was still pretty much on the Cyclosporine for this shot too, she is not sure if his body will react from this Tetanus shot either. I guess we will find out in a month when I draw his blood. Remember, this is still a pretty new procedure, the transplant, so it is still a learning process for Dr. Markert too. She said that in the future, she will probably not give any kiddo the Tetanus unless they are off the Cyclosporine. She is amazing. She was also very excited about Caleb crawling.

Caleb continues to do well with his therapy sessions. We are trying to get him to take stuff by mouth. He surprised me yesterday. . . I always put food in front of him just in case he may want to try it. This is even a big step for him too as he used to not even tolerate a plate with a couple items of food in his 'area' due to his sensory issues. But yesterday he took a couple of those cereal puffs that disolve in his hands and placed them in his mouth. Again, I had to act like it wasn't a big deal but WOW. I immediately called Brian on his cell phone and told him. Once Caleb put the cereal in his mouth though, he didn't know what to do as this is the first time he has done this ever in his life. Who knows when he will do this again though, as we have been told repeatedly that kiddos like Caleb with severe sensory issues may have a day like that and then it may be AWHILE until they do it again. But I am so glad we had that day! I truly believe the more we can let him 'control' the feeding situation the better. I guess we will have to wait and see.

I am in the process of trying to get help in regards to Caleb's insurance coverage for nursing and for billing. We just found out we owe $500 more to Duke when they have already billed over 1 million . . .and that is Duke alone ....who knows how much Children's bills will amount to. But I have been in contact with Governor Manchin, Congressman Mollohan, and all the senators offices so hopefully they will help us with this as it is getting overwhelming.

Well I have to go give Caleb a feeding bolus. Have a great day and thanks for checking in on us.

God Bless you all!!

God Bless Caleb!!


Jen Straub said...

What an exciting weekend!!!!! God Bless you all and God Bless that Beautiful Boy!!! He is so amazing!! Love you all!!

Aunt Jen

Chris B said...

HURRAY!! It was so wonderful to have a chance to see you and Caleb on Saturday - I realized it has been 2 years since I've seen him in person - pure joy to have that chance!

Much love-

Eva Nichole said...

GREAT JOB CALEB!!! I am so proud and happy got for you all.
Its amazing when they do something so grand.
Keep it up big guy.
Crystal and Eva

Lisa and her daddy said...

Hi Caleb,
I was looking at your blog and I'm inspired by your strength. Keep on fighting and making your mommy and daddy proud!
Lisa Tokuda-Glenz from Tokyo

Amy, Mike and Ben Russo said...

Crawling already... that is great. He is amazing! Ben still doesn't crawl.

lee said...

Go Caleb!!!!
That is awesome!
And go Mom and Dad for containing yourselves, I know you were screaming inside!


Julie said...

Oh how i miss you guys soooooo much. I really need to send you the photos that i took of caleb when he was here. tell grandma i said hi. You guys are looking so good. I am glad caleb is doing well. Lets pray for him to eat more food......

Lisa W. said...

Yay - great news for Caleb...keep on crawling! He'll be running before you know it. I'm so glad I found some time to check up on everyone's blog tonight, I'm reading all sorts of good news!