Late Monday Night - Update on Josiah & Everything Else

A cheery & weary hello to everyone :)

Sorry that I haven't posted an update in a while. I was 'offline' for some time, and since there wasn't anything immediate to communicate, I decided my time was best spent 'chilling' (aka resting ... but is there ever rest for a parent?!)

Anyways, you're not reading this to see my babble - you want to know about Josiah. Josiah seems to be a lot more stable today than yesterday. Sunday morning they did put a tube down his trachea again so basically a machine is breathing for him. For about 12 hours over Saturday night and Sunday morning the doctors let Josiah take his best shot at breathing on his own, and it was pretty hard for him. So respiratory assistance was needed.

As you know, Josiah was born with narrow airways (nasal and throat) and this problem has been compounded by all the tests and scopes that were performed on him at the end of last week. Obviously when you stick something down your trachea it's going to swell a little and your body as a natural response generates mucus to protect your airways. So narrow trachea + floppy trachea (yeah, the docs say his trachea isn't as firm as it should be I guess) + swelling + mucus = difficulty breathing. Very hard to take and see, especially since Josiah breathed fine on his own for 3-4 before he had these tests.

But, as I mentioned above, Josiah appears to be more stable today. I haven't talked with Marie since I left (around 1 PM-ish), so I'm just going on what I know from this morning. Josiah really appears to be more relaxed. A couple of body signals are his unclenched hands (he often has really tight fists, a sign of hyper-tensive) and his relaxed eyelids. Usually his eyes are so clenched that you can't see his eyelashes, but today we definitely could so we take it as a good sign!

The doctors are planning on leaving the tube in until mid-week when they re-evaluate. No tests are planned by the specialists until the end of the week and they aren't expecting to gone his throat anymore which is really REALLY good!

Of course it's really difficult as parents to see him in this state. Because he has a tube down his throat, he obviously can't be very mobile. Marie might have been able to hold him tonight if he had a good day. We aren't really supposed to touch him much - because any stimulation will wake him up and remind him of his discomfort - so it's best right now just to let him sleep a lot ... which is so hard to ask parents because all you want to do is rub him up and down!!!

So, as far as prayer requests go ...

• Pray that his trachea will heal and open up so that he can breathe comfortably and consistently
• Pray that his epiglottis will develop so that when he is ready to eat, food won't go into his lungs
• Pray for Marie as she is finding this EXTREMELY hard, especially when her cuddle time with Josiah is basically nil

Right now we just want our boy to be able to breathe and eat. We can deal with whatever other complications Pallister-Hall Syndrome might bring in his future ... we just want to know that he will be able to accomplish the basics of life.

But you know, I'm being daily reminded of how good his situation is. Obviously God have been revealing his divine timing and provision all along the way. And even looking around the NICU there are so many families going through rougher times than our own and we are just so glad to know that Josiah is a strong kid, a fighter, and that our God is looking out for him just as He's looking out for all the children in the NICU.

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Other things to note ...

HOST SITE & PICS OF JOSIAH
Hey, so next time my host site shuts the door on you guys because I've exceeded my download limit let me know!!! Sheesh! It only cost me $5 to open it up again so yes, we're back in business. I'll be adding some more pics to download as soon as I'm done this blog.

Please let me the next time anyone has trouble download from that site.

For those who don't know what I'm talking about, I have a host site that in the past I have used to store youth ministry resources online. I have been dumping pics and vids of our Josiah onto that site for people to download and enjoy.

Website: amd.streamload.com
UserName: andrews_friends
Password: ypinabby

All the pics/vids of Josiah where labeled by my camera and begin with a "DSCN". Just click on the green arrow for the download. After uploading some new pics, I also hope to label them properly.

CONTACTING US
If you are trying to get in touch with Marie or I, there are a couple of options:

• My Hotmail account (andyman_sdg@hotmail.com) - checked periodically in the day
• My Cell number (ask around if you don't have it)
• Easter Seals House (604-736-3475) - you can leave a message if we're not there (we usually go to bed around 11 PM-midnight and wake up around 7-8 ish

There is also a phone number for the receptionist @ the NICU, but I'm not comfortable posting that on the net. The number for the hospital is 604-875-2000 and I'm sure you can be directed to the NICU from there.

If you are wanting to visit us, call us a day before so that we can set a time and keep an eye out for you.

OTHER STUFF
My sermon and our AGM (Annual General Meeting - that was tonight) went well. I blubbered my way through a Josiah update at church on Sunday, just dealing with the emotion of it all (of course) and trying to (feebly I think) share our deep appreciation and love for all the church has done for us. I was totally ready to cry ... it's a good church to cry in front of! I was then able to keep focused during the sermon which was good.

I'm going to get a few things done around town tomorrow and then I'm back to Vancouver for the night. I'm still not too sure how my duties as a father and husband will balance with my responsibilities on the job, but we'll be taking that as a week-by-week basis I think.

Thanks for those who have visited us: Grandpa & Marie, Rob & Leanne D. & family for hanging out with us, and for Trina U. for having a sleep over with Marie tonight! Thanks for all the cards and help (especially you church family!)

In God's Grace & Peace ... and HOPE!
- Andrew, Marie, and Josiah