Hello all....Sorry for the delay once again in updates. But I wanted to keep the last update up there as long as I could as we all, you all included, have been waiting for a post like that for so long. WOOOHOO
We are still awaiting some clairifications from the doctors on what we can and cannot do with Caleb within the next couple of months and up to the big immune test in January 2010. So when I do get those updates I will let you all know. We do know that Caleb will finally be able to meet a short list of people around March. We are so excited that Caleb will get to meet his Uncle Chad and Aunt Jen, Uncle Ben and Aunt Stacy, and my best friend Jen Straub (Aunt Jen). We haven't gotten the 'okay' on him meeting kiddos yet, so we will continue to watch Jon and Kate plus 8 for Caleb to see other kids and of cours for me to get to watch it too (I love that show) until Caleb can meet his Cousins-Samamtha, Casey, and Hunter. We and so are all of them are so excited that they will get to 'see' Caleb.
On the medical front Caleb continues to have a pretty low heart rate since he was admitted for that nasty line infection back in January. We are not sure why he has this low heart rate. We have monitored it on a monitor here at home. But Dr. Frangiskakis now thinks it would be smart to get an EKG to check to make sure Caleb's heart is okay. We are waiting on the EKG order and then will be scheduling it. As soon as I know more, I will post. Also, since Caleb's immune tests weren't up to protocol standards, we will be doing another tetanus shot soon and hopefully the results will be up to protocol. Fingers crossed!
Caleb has definitely started to get the concept of signing. It is great to start being able to communicate with him more. He is very smart-but what mom wouldn't say that. HA HA He loves saying the word 'alligator' and signing it. So cute...Brian and I are looking for a stuffed alligator for him. He also loves giving kisses, I personally cannot get enough of that! He is crawling and cruising more. We are also trying to transition him out of his crib, but haven't found a safe option yet. We will though-I am determined (and so is my friend Jen-thanks Jen)! He also has asked to get up in his highchair more, which is great milestone, as anytime he is in that we do feeding therapy. So my hopes are is that he will become more tolerable of this situation. He even signed, once in the highchair the other day, 'eat', and when I asked him if he wanted a bite he pointed to him mouth and opened it AND let me put a spoonful in. He didn't swallow, BUT that is absolutely amazing for him to communicate with me regarding feeding and to want me to put a bite in his mouth. Since then he has signed for a bite but has shut his mouth when I put a spoonful to his mouth. But like I have said before, to have a day like we had the other day proves that he can do it, we just will have to be patient, as always, because it could be few and far between.
Well I have to go tend to Caleb, but wanted to post. I will start posting more reguarly again (just wanted to leave that last post up for awhile) Thanks all for checking in on us and feel free to leave a comment by clicking on the 'comment' link.
God Bless you all!
God Bless Caleb!!
Caleb was born with two rare syndromes, CHARGE and DiGeorge. Caleb is the 6th person in the world born with both syndromes. CHARGE is a multisystem-effecting syndrome which can cause several severe anomolies. DiGeorge prevented Caleb from developing an immune system. He spent over a year straight in the hospital, had multiple surgeries with a possibility of having more in the future. This blog details his heroic journey and story. God Bless Caleb!!
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"
4 comments:
I am so glad to hear the great news and amazing progress! As always, you all remain in our thoughts and prayers!!
Alisha
Thanks for the update and sounds like Caleb is doing some amazing things! How nice to finally get to meet some of his fans... I expect lots of pics!
Wow sounds like Caleb is doing some really good things. Thanks for stopping by our page and of course you can add a link to Christopher's page to Caleb's. Christopher was actually tested for DiGeorge Syndrome but came back negative. He had some immune system issues for a little while so I can relate a little in what ya'll are having to do with Caleb. He is a very precious, cute little boy!
The Clayton Family
WOW more great news!! Way to go Caleb!! How exciting that he will get to meet more people, I can not wait for the day that we can come meet him also.
Keep up the great work and I will keep him in my prayers with EKG.
Hugs,
Crystal and Eva
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