Friday, July 25, 2008


Hi, everyone. Thanks for being patient for this update! And for pics...I haven't had a computer besides the hospital one, and I can't download pics to it.

Carli got to hold Maddy for the first time today. She was thrilled. The nurse took a picture and printed two copies, one for us, and one for Carli.

Sounds like Maddy will be released on Tuesday, "no later than Wednesday," though I know that things could change between now and then. Just trusting they don't! Please pray that Maddy will quit dropping her O2 levels so they can take her off the oxygen.

One of the "micro" chromosome tests came back positive for DiGeorge's syndrome. This is nothing life threatening, thank God. She may have a lower immune system, and her calcium levels are low, so they're starting on calcium. They're not sure if the SB was a complicating issue with the DiGeorge's, or if she just hit the jackpot, so to speak, and ended up with two unrelated issues.

Maddy's been a busy girl. She also had a voiding cystourethrogram today, and she has grade 2 and grade 3 reflux from her bladder to her kidneys. The urologist has ordered her on amoxycillin, since that would cause kidney infections pretty easily.

Ok, some positives!! Mommy is learning to catheterize Maddy! It's not nearly as scary as it looks or sounds, fortunately. The main pain is that in the hospital it's a sterile home it will be a clean procedure. I had no idea how much work goes into sterile procedures. Benjy and Lisa are laughing at me by now, I'm sure! :)

More good news: The echo came back with nothing more than a patent ______ valley, which causes the murmur. This should close on it's own, and is very common. There are no other defects, which is really good news, since one of the presenting symptoms of DiGeorge's is heart defects.

Even better news: The optic nerve is NORMAL, effectively ruling out septic optic dysplasia that they were worried about before! This is a huge PRAISE THE LORD, for sure.

More: The overall chromosome test, the one that looks at the big picture for missing chromosomes and proper structure came back just fine. They'd told me when they diagnosed Maddy that SB can be a presenting symptom of Trisomy 13 or 18, both of which are fatal. While they were pretty sure even with just an ultrasound that this wasn't the case, or even at birth, they couldn't rule it out until the results of this test were back. I can't say that I've sat around and stewed about that test, but when I did think about it, I was anxious. I'm so thankful for this answer to prayer.

And last, and yes, this time the least, we were able to borrow a brand new car bed from Riley Children's. This special car seat will allow us to transport Maddy without putting undo pressure on the kyphosis. They didn't charge us any fees for the loan, so no more money out for that! We're hoping to talk to the orthopedic doctor about the kyphosis when he comes on Monday. Dr. Young had said that it may be easier to do surgery on the kyphosis during infancy rather than later, and since we're already having to deal with positioning both in car seats and in bed, I imagine that he's right.

Are you bored to tears yet? I'll just add one more thing. People have asked if Maddy is paralyzed or not. By all appearances, it seems that she is from her bellybutton down. She's had IVs and shots in her feet and legs, not to mention cathing every six hours, and she doesn't make a peep. She has no involuntary movement in her legs that anyone has seen. Of course she'll be in a lot of therapy, so she'll get every opportunity to go beyond what it seems now. And of course God may have other plans for her. But whatever He has in store for her, we're ok and very used to the idea. We know she has a special purpose that He wants her to find, as the song goes.

Ok, really, I'm signing off now! Thanks for sticking with me through all the details!


Carla said...

Thanks for the updates! We enjoy reading about Maddy's progress!
Warren & Carla

Anonymous said...

Praise the Lord for all the good reports! Marilyn Weese

Anonymous said...

What a tough little girl. My family will keep you family in our prayers. What a bunch of excellent news!

Anonymous said...

She's one tough cookie =] Happy to read about all the good reports. Still praying for you all. So happy big sis got to hold her too.


Faith said...

Been thinking of and praying for you all but haven't gotten in here for what I thought was "a little while" but apparently is "a while"!

So beautiful to see how God is with each one of you. No problem with all the details! Share as much as you like because you aren't just sharing details, you're sharing your heart. :)

* hugs *