So I just off the phone with Marie a few minutes ago. It appears that Josiah did have his breathing tube taken out, but the doctors are now considering putting it back in for the third time because he is having a hard time breathing on his own.
This is so hard to take. There was a stretch of two days when Josiah breathed fine on his own and now he's had three days in a row where it's been such a struggle to get enough oxygen in. The doctors believe that his difficulty with breathing is do to his narrow passage ways (as mentioned before) and that his trachea (ugh, spelling help anyone?) is kind of floppy (I don't know if that's normal for preemies or not). And to top it all off, he's had two days of doctors putting tubes and scopes down his throat which certainly must cause some irritation and blockage of the airways.
Marie and I of course try to take this best we can, but it's pretty hard. It's enough to know that your offspring faces a life of uncertainty with Pallister-Hall Syndrome; it's double hard to see him struggle with something so basic as breathing.
So, we're asking for God to do a miracle. A miracle to heal his airways, to open them up so that Josiah can breathe comfortably and consistently on his own, and that the epiglottis behind his tongue would develop to the point that Josiah can swallow without food going into his larynx. If you could pray specifically with us to that end, we would really appreciate it.
On a happy note, Marie was able to hold Josiah for half an hour today. I so wish it could be more ...
Thanks everyone. You are the dispensers of God's love to us on earth.
- Andrew, Marie & Josiah
4 comments:
amdrew,
Hey bro, michael here. just got the latest update. We'll i hope that josiah can have a few days of just lying aroung around, you know what i mean. like you said it's gotta be hard to be handled like that so much. if it's just his airways that are small thats causing the harder breathing, maybe it'll be just a matter of time before he can start breathing alittle more easier. i guess all you can do is wait and take it day to day. like you said josiah's a pretty strong kid, thats can help his progress.
on a lighter note the canucks continue there winning ways. 6 straight games now with a win not bad for a team everyone thought was going to stink up this year. big game tommorow night, dallas 12:30.
Anyways we will pray tonight that josiah will be able to breath easier and that he eventually can do it all himself. talk to you soon.
michael
Im sorry that he is having a hard time breathing God will have his hand on when its time for him to breathe on his own.
If you two are going to get a swing. With preemies it needs to be a side to side swing. For their little heads.
I will pray along with everyone else who I know is praying.
Love you guys
Am still praying and have even put a request on my "prayer requests" page!!! So far I have one response from that...
Jesus please open Josiah's passageways so that he can breathe on his own. Holy Spirit fill him right now completely, be his tube, his breath, Lord breathe into his little nostrils like you did Adam in the beginning, Amen!
A side note: I'm listening to:Christianrock.net and "Rebirthing by Skillet" is playing...as I was praying the words "Feel your presence filling up my lungs with oxygen" You can see if the song is offered at: www.radioblogclub.com to hear if you haven't before. Such a great song!!!
Praying for Josiah and his family. This must be very difficult for you all, but we know Josiah is in God's hands, and there are a lot of people (even those you don't know) praying for you.
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