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, August 08, 2007

Zero for Five

We are zero for five Thymuses and we now know that the one being removed this week is not a candidate either. So we keep waiting and continue praying that Caleb can stay healthy while we wait.

Dad and Brian were here this past weekend. It was so nice to have them here!! Caleb started talking more during their visit. He says momma, dadda, uh-oh, oh my, and a version of I love you. He also loves to stick his tongue out at his Pap Pap. He also is starting to wave!!! He is getting really good at mimicking noises and motions. Dad and Brian left on Tuesday, and it was hard, as it seemed like they just got here. They are both our incomes, but man if we could win the lottery so they could both quit. . .that would be the best!!!

Caleb is still fighting that infection. His clotting factors have been off which made him bleed (and we are wondering if they still are off) internally. They did a test to check to see if they could tell where the bleeding was coming from and they are not sure. They placed a new ND (nasal duodenum) tube yesterday and tried feeds. He has vomitted a lot today and they have all been positive for blood. The docs seem to think that the blood is due to the tube placement, however, I think that this is still related to whatever was making him bleed last week. Another concern, if he can't get his nutrition through the ND tube he has to get TPN (intravenous nutrition). However, the TPN made his liver function tests (LFTs) rise very high in the PICU and they are starting to do that now. Brian and I are wondering if a G-tube/Mickey Button (semi-permanent feeding tube in the belly), would be a better option for Caleb. The G-tube may be a better option as he wouldn't have to be exposed to radiation as much (they use radiation every time a ND tube is placed), may make feeding easier, easier to feed him after his cleft surgery, etc. I guess we will have to see if that could be an option.

With the vomiting today Caleb has started to get more cranky so I am getting nervous as to what is causing all this. He also was 99.1 (not a temp-but higher than his norm) this afternoon, so I am hoping he doesn't run any temps throughout the night.

Well all, as promised the second half of pictures from Caleb's first birthday are below...enjoy. I will have newer ones from the most recent visit as long as things are okay here.

God Bless Caleb!!


ellen charge said...

wow thank god for an update form u ive been wondering how u all were

Anonymous said...

I'm so glad to see an update and to see pictures and videos of Caleb!

What your family is going through breaks my heart every day, but you all amaze me with your strength and your optimism. You are truly an inspiration.

I love you all...and miss you terribly!!

God Bless & Lotsa Love,

Jen Straub said...

Oh Sades, I am sorry there is still no Thymus, but it is good to know they are checking so thoroughly first! We love you and miss you and so love to hear the "sounds of Caleb" and to see your beautiful boy (Ok, boys, sorry Brian!). We wish we could win the lottery for you too!! Keep up the good fight! Caleb's day is coming! God Bless you all!! Kisses to Bubber!

Love- Aunt Jen, Uncle Andy, and Haleigh

T Moss said...

So glad to get an up-date on Caleb; I found him thru the Mighty Maxwell blog; Wow, Caleb is such an inspiration to me; despite all he has endured, he is still smiling and laughing. We all could learn a lesson. I promise, if I win the lottery, I'll make sure your family can be right by your side all the time!!

Eva Nichole said...

I think and pray for Caleb everyday, he is a very sweet and special little guy. We will continue to pray for him and that he stays healthy and that a new thymus comes in soon.
I also LOVE all the new pics and videos of Caleb I can see all the love he gets everyday!!
Crystal and Eva

chris said...

Thanks so much for the post Sadie - I know it's hard for you to find the time so it's great when you can - and OK when you can't!! I loved the video and am so tickled to hear Caleb is talking!!! What an inspiration each one of you is for the rest of us. The thymus will come!!!

Much love and hugs to all of you-
Chris XOXO

lbug3000 said...

uh oh!!! caleb is talking!!! look out world!!! isnt he amazing! that really made my day. that and the video, i am so glad he likes his books.(:
we are praying for the perfect thymus to come your way and as always you are all always in our thoughts. god bless bless bless you!!!
christie and family