my kids

my kids
i love this pic

Sunday, May 13, 2007


Well we went to the NIH and came home on another injection called kineret. This is to lower fevers and help with the arthritic pain. I really hope it doesnt make her monstrous like the other med did.
We will return there in August or sept for a follow up/

Monday, May 7, 2007


Today we are at the NIH in Bethesda Maryland. WE flew in last night and are here til thursday. SHould be fun. Bought over 500 dollars worth of clothing today for 170 pretty good eh!

Wednesday, May 2, 2007


Todays posting on the blog
Greetings All

Today has been pretty good for Josiah. He has been taken off his paralysis, but is still receiving a lot of sedatives to keep him sleepy and morphine to take off the pain. Earlier in the day he was brady-ing/d-sating but that seems to be improving with each handling. He's also receiving full feeds continuously (milk is regulated by a machine so that it doesn't go into his belly too fast).

For a while there he was difficult to ventilate, but he was given a different machine that seems to meet his needs better. So he takes breathe right now on his own power, but the machine will jump in a breathe for him if he doesn't draw in enough air.

Right now the biggest concern is his leak around the trache. As his stoma (the incision in his throat) heals, the seal will be better but until then we just have wait to see what happens. Too much air is escaping out of his throat and not going into his lungs. So he's not getting the volume and pressure he needs, but his oxygen percentage remains decent. An X-ray of his chest shows that one of his lungs might be partially collapsed, but it could also be that he has fluid in his lungs. With this information pneumonia is a serious concern, but right now he seems to be coughing up a lot of those secretions and taking deeper breathes so hopefully his lungs are improving.

Josiah is squiggling and moving his body a little. He also openned up his eyes a little which was so nice to see, but he's still waaaaaaaaaay too groggy to really be alert a look around. Right now Marie has him sucking a soother ... which has to be a pretty surreal experience now that he doesn't have a tube in the way and can enjoy a full (not cut in half) soother!

Josiah's G-Tube surgery is still scheduled for May 9. Appearantly it's nothing compared to trache surgery, but eh ... it's still surgery, right? In a couple weeks (after the morphine, sedatives, and paralysis has completely worn off) we'll bring in an OT (occupational therapist) to observe his swallowing technique. That is HUGE - if Josiah can breathe on his own it doesn't solve all his problems, but gives us the hope that he might be able to manage his spit ups and burps, not allowing them to go down into his lungs.

We are also praying for his surgery to heal well. There is a bit of an ulcer forming under the trache from the appliance rubbing the skin, and his double-chin is sometimes getting in the way, but all in all it's doing OK. The main thing is that the trache needs to remain 90 degrees to his body, and the sensitive area needs to remain dry (the have placed gauze around the trache to absorb the post-op 'ooze' that secretes from the area).

Enjoy the pics of our man! Time for me to get some dinner.

All glory & praise to God who is good and does good things.
- Andrew, Marie & Josiah

Tuesday, May 1, 2007

May 1st

WOW Its May already. I sometimes feel like the world is going round me as fast as it can and im missing something. Ive had a few days off from work and i am so content. However I do miss the residents and such.
Kiara and I fly back to the NIH in Maryland next week. We are very excited to go.
Kiara loves to fly. It is a long day but we can handle it.


For anyone following him.. I have added a posting below for you to see.
He is adorable and we just pray that gods will is being done. As parents it is so hard to see a child with a lifetime disability and unknown certainty. There is no rhyme or reason. There is no parent who wouldnt want to do everything for their child. However, when does it become too much?


Recent posting from his family

Josiah is back in the NICU, in the same room (41) but in a different spot, a sperated side room where he can be watched and kept isolated for the next few days.

Josiah is well doped, though he did try to arch his back on his way back from the OR (catching the nurses by surprise, but he didn't do any harm to himself!) Josiah will be on IV for at least the next day, but may be able to get back on milk tomorrow. As long as Josiah is sedated like this, he will also be on a ventilator since he isn't alert enough to breathe on his own yet.

Everything has gone well up to this point. It's hard for Marie and I to adjust to the fact he'll have this appliance attached to him for a while, but it's so wonderful to see his full face again.

Prayer requests: that Josiah will heal fully and quickly, that he will be able to breathe on his own when that time comes, that the community nurses will be in place for when we are ready to go, for strength for Marie and I through these days, and that Josiah will be protected from harm, injury, viruses and infections now and throughout his time on the 'trache'. I have mentioned it before, but Josiah is now much more vulnerable to viruses and infections now that he's on the trache. This is part of the reason there is a 15% risk of Sudden Death for those who live with a trache. Yeah, talk about living under God's mercy.

We may post later in the day, but who knows. Right now we're just adjusting. In ending, I'll post the lyrics to a song that's been on repeat for me. Kudos and back-slaps for anyone who knows the band!

I know one day, all our scars will disappear,
like the stars at dawnand all of our pain,
will fade away when morning comes

and on that day when we look backwards we will see,
that everything is changed
and all of our trials, will be as milestones on the way

and as long as we live,
every scar is a bridge to someone's broken heart
and there's no greater love,
than that one shed his blood for his friends

on that day all of the scales will swing to set all the wrongs to right
all of our tears, and all of our fears will take to flight
but until then all of our scars will still remain,
but we've learned that if we'll
open the wounds and share them then soon they start to heal

as long as we live,
every scar is a bridge to someone's broken heart
and there's no greater love,
than that one shed his blood for his friends

we must see that every scar is a bridge,
and as long as we live we must open up these wounds
when some one stands in your shoes and will shed his own blood
there's no greater love. we must open up our wounds