Tuesday, February 20, 2007

Happy Valentine's Day to you all! We had a great day with Jordan finally eating better and much happier. Noah and Jordan's friends, Ivy and Gabe came over to play and make (actually just eat) Valentine cookies.

Jordan is much happier lately and is doing much better. It's still a challenge to get her to take all of her bottles and it's a difficult balance between giving her enough rice cereal in her milk to help with the reflux but not so much that she can't make room for more - if you know what I mean. :)
One other problem is that her skin keeps coming off with the steri-strips we have to use to keep the nose stints in. They get clogged with her spit up so she can't breathe and we have to change them but every time we change them the skin on her cheeks gets more raw.

Today Jordan got her second cast change and the doctor opted for a short cast. She still has about four more weeks with the cast on. He said that there will be no problem with her walking! Praise the Lord! He also said her z-plasty, to smooth out the band in her leg, is healing well. He also said that the bones are not fused together on her hand. He thinks he will just need to cut the webbing and do some plastic work on them and we'll have more to work with than we first thought. He's unsure how long they'll be after the seperation but it does look better than we first thought.

Here's a summary for prayers and praises...

+ Praise that the doctor is confident that she'll walk without problem with the help of physical therapy.

+Praise that we are two weeks down on these cast changes and that it's now a short cast, meaning we can put regular pants on her (not so obvious, less people staring).

+Praise that the z-plasties (spelling?) are healing well and are pretty smooth. We were hoping the back of the leg would be smoother but we are still very pleased.

+Praise that her reflux is much more manageable with the new medicine and that we are thinking we can now avoid an upper G.I. (barium swallow with an x-ray).

- Pray that her reflux will get even more under control and that sooner rather than later, she won't need medicine for it.

- Pray that she will begin napping on a schedule during the day. At this point she only cat-naps and mostly wants to be held.

- Pray that her skin will hold up under the strips that hold her nose stints in and that they won't get so clogged with spit up that I need to change them in order to get her to eat. They've become such a problem but we are supposed to keep them in for six months.

*********Thanks for checking in again!

Tuesday, February 13, 2007

I just wanted to encourage everyone in the fact that things are looking up for the Gray Family. Jordan is on a new medication that coats her throat so that the damage to it doesn't cause her pain. Literally, an hour after her first dose she drank an entire 6 oz bottle without even a whimper.

Praise the Lord for His provision!

We're working on insuarance approval for a longer term acid blocker for her to take so the throat doesn't get irritated so badly again but it sounds like it should go through. She is so much less fussy and actually smiles again. Noah is adjusting well this week too. He even kissed her yesterday and has been warming up to me again after beign jealous of my time with Jordan.

I'm glad to say that we won't have too many more postings for the blog for a while since all is going so well. I can't thank you all enough for your prayers and for your encouragment and offers of assistance. When we look back on this time in our lives you will all be a part of this challenging but amazing time in our lives when we were able to see God's hand at work in so many ways.

Shannon, Jen, Noah, Jordan Joy (and Peekay and Junior too!)

Friday, February 09, 2007

On the Road to Recovery!!

Jordan had another long day today but now officially has her new lip.
She had her stitches taken out this morning in her lip and nose and looks beautiful. She'll wear her nose stints (nose shapers with the tape holding them in) for six months and will wear the "no-nos" on her arms for two more weeks to keep her hands away from her face.

She also had her orthopedic check up where Dr. Rosenfeld removed her cast to check the stitches on her leg where they released the band and to re-set her foot. The front of the leg looks fantastic but I'm a little concerned about the back. It's still quite indented. Dr. Rosenfeld thinks it's just the swelling. Either way, it's MUCH better. Her foot can't just be pulled all the way down so they are doing it in stages. Her cast is a little smaller this week but she still isn't ready for a short cast so it still goes up to her diaper. He also removed the bandages on her hand where he released the webbing of two fingers. It looks really good and she's already moving her fingers a bit more. We're cleared to start occupational and physical therapy two times a week for her in Dana Point (yes, that's on top of the one appt a week she has to see the doctor). Please pray for her therapy to start soon, for Noah to be taken care of during these appts and for her to progress rapidly with the use of her hands.

We, of course, had another set back with insurance hassles and getting in to see a G.I. specialist for her reflux. Her pediatrician told us to go to the emergency room tonight to get fluids in her but she's not showing signs of severe dehydration so we're waiting and keeping an eye on her. He tried to get her admitted but there were no beds so we'd have to spend the night in the ER if we went. She is up from seven ounces in a day to 11 so far today. That's more than she's had in one day since before the surgery. Pray for us to get in asap to the specialist and for them to find the problem and fix it.

Thanks so much for all the phone calls and meals. They've been SO appreciated. I don't know what we'll do once my mom and step-dad go home on Sunday but you can all be sure we'll be calling on your many offers of help. Noah has had a really tough time adjusting which makes us feel guilty when we're tending to Jordan's many needs right now. We're trying to remember that he is learning the best lesson ever - to consider others above himself. Pray for our adjustment as a family and for Noah's patience and love for Jordan.

Wednesday, February 07, 2007

So far Jordan is healing pretty well physically but is having a few setbacks.
--She isn't eating well. For a few weeks we've had a hard time getting her to drink. We've blamed it on several different things (ear infection, reflux, constipation...) but after treating all of them it's even worse now. The doctor was figuring out today how much weight she has gained in the last 48 days and it added up to only 3 oz (technically she gained more but lost it)!! The pediatrician is really concerned and wants us to see a GI doctor as soon as the referral goes through. We're supposed to watch for signs of dehydration and take her to the ER at CHOC if she doesn't start eating more by the time we can get to the specialist. The current theory is that she has developed an aversion to drinking due to her painful reflux. It's so sad - she's starving but won't eat. When we can sneak a little milk in she ends up spitting it up and screaming the whole time. :(
--We can't keep her nasal stints in and can't bear to force them back in while she cries.
--Her face is starting to become really irritated by the tape holding the stints in her nose.

One real blessing we have through this is seeing Jordan's new smile. She was beautiful before but now we just keep staring at her and loving her new look! God has also been so good by reminding me daily of the blessings we have.

I'll post a picture of that beautiful new smile tomorrow. :)


Saturday, February 03, 2007

This is my favorite shot of her with her lamb and her prayer quilt from church.
So sweet!!!

First Surgery Down!
Oh my.
This was rougher on her than we expected and was therefore much harder on us to watch. In the hospital the only part of her that wasn't affected was her trunk. Her left leg had an I.V., her right leg had the toes released from the leg and eight Z-Plasties around her calf to loosen the constriction ring, her right hand had an I.V., her left hand had webbing released, her lip was repaired and she had a nose job. She was in A LOT of pain and was prescribed Morphine every four hours. The only problem with that is that Morphine is a 1 1/2 hour acting drug. Every hour and a half she would start thrashing around and screaming but the nurses couldn't give her anything more than Tylenol with Codeine. SOOO sad!! Finally they called the doctor at 5:00 this morning and they increased the Morphine. By this afternoon she was off the Morphine, only on Tylenol with Codeine and off the oxygen. We were able to get a little milk in her later in afternoon/early evening so they let us bring her home. Unfortunately right when we get her home we realize her nasal stints (these plastic tubes keeping her new nostrils open) are falling out. We panicked and tried to shove them back up into her nose with no success. We're not sure what to do now but are thinking we'll have to take them out until her follow-up with the doctor who can put them back and then show us how to do it.
We are very tired (I'm completely drained!!) and are looking forward to a night of waking up so I'll write more about the experience later. I just wanted to make sure I got pictures out soon and a quick update.
Thank you all for your prayers and your messages of concern!