Wednesday, August 30, 2006

Thank you

Thank you to everyone who left comments, your notes of encouragement mean a lot to me. I am feeling much better today. I guess maybe it is going to be like this for a while, but last night my husband spent time in God's Word with me and prayed for me. I really think all these things did help my mood to be much brighter today. Thank you for praying - I guess in many ways I need your prayers as much as Dillon does.
I didn't want to get my hopes up - or anyone else's for that matter - but last night Josiah was holding Dillon in a "football" hold (his head in Si's hand and his legs near Si's elbow). Josiah stood on our bed because we have very dark pipes as our ceiling so I decorated with white lights and by standing on the bed Dillon was right near them. Si would move his arm all the way to the right and Dillon would turn his head to the left, Si would go all the way to the left and Dillon's head move to the right. Si is pretty sure he was tracking the lights! I saw Dillon doing it and would tend to agree with Si, I am just being a pessimist because it is easier than getting my hopes up only to have them be crashed - again.
The Speech therapist saw him today for the first time and told me how to work with him a little better. She has never worked with a child who couldn't swallow at all though and has only worked with 2 or 3 babies this young. She seems like she is going to be okay anyways, she said she is going to do research to make sure he is old enough for her to try something called cold therapy. I guess that is where we would dip a Q-Tip in sterile water and freeze it. Then we would somehow put it on the back of his throat. She said she thought she saw little movements in his neck - which would mean swallowing - but couldn't be sure at this point. We mainly have to work with him to strengthen his mouth muscles.
Most of today was spent making phone call after phone for doctors, and bills, and Social Security stuff, etc. But it was a good day. Oh yeah, the neurologist said to have another MRI done in the next week or two. If it were just an injury his brain should be "normalized" by now, if it isn't - well we will cross that bridge when it comes (those were his words, not mine.) I was under the impression that it is permanent damage - but I guess it may not be. The last MRI was done when he was 11 days old, now that he is 10 weeks and by then 12 weeks they should be able to tell if his brain is "fixing" itself or not. This is a blessing! I am praying that the MRI will show improvements - if not a PERFECT brain scan...Hey - God can do it, right?


Abbi said...

I'm SO GLAD that you are having a better day! Isn't that just like the LORD?? To give us a good day after a down day?! He knows what we can handle and always gives us the grace to meet the challenge. I'm so glad today is better!

Keep on loving your sweet, little man! He knows his Mama's tender touch! And our loving Father knows just what we need each day!

Life full of blessings said...

Hi Tiffany,
I want to let you know I was praying for you today...I so remember the beginning days of "soaking" it all in....what exactly will life be like with a miracle baby? :) You had asked me about Ezra's CP, well yes, it did develop gradually and mainly he has CP cause of not being able to walk, the extrememely tight muscle tone, and his overall delay in development. Right now, his back has a curve in it, the shape of a C, this was due to him pulling to one side, this started at a few months old...the BEST thing to do for Dillon is MOVE him around, stretch him out, and LOVE on him :) He DOES know his mommy and daddy....Keep talking to him, as he can HEAR and show him your face A LOT, like he can see....DON'T shy away from him in these area...NOT that you are, just encouraging you to maintain what I already understand you to be doing :)
One thing you wrote about, sucking....well Ezra did not suck or gag at birth...his Speech Ther. did exactly what you wrote about, the cold treatment with Q-tips and it was GREAT...she also gave him lemonade powder to trigger the swallow, worked and was AMAZING, it made me CRY to feel him sucking!!! It was GREAT! His sucking and swallowing is not great today, he prefers to EAT :) which you LORD willing will enjoy in the, we still struggle with sucking and swallowing...he still get Tube feedings, but not by the Kangeroo pump anymore...does Dillon have a pump? One thing I did...a suggestion, every time I started a feed, or at least I would try :), I would put a pacifier in his mouth and making a licking lips sound...and tell him, "eating is with our mouth Ezra..." NOW, he makes the sucking/licking lips sound when he is HUNGRY!!!! I believe he learned that back then, that our mouths and hungry bellies go together! :) Try it....
Well, this got long...I have more "tips" if you want, maybe email me sometime....
I know life is talked about being on the PHONE, Yah, right there with you :)
God bless....

Life full of blessings said...

HI, sorry, here is my email
email any time :)

Kay said...

Hey Tiff, i just wanted to let you know i'm praying for you and Dillon! -Kay-