Thursday, September 13, 2007

Reagan Update!

Oh my, Oh my where to begin!

Reagan is doing WONDERFUL this week!

She had her EEG last week and we got results on Friday. Everything is PERFECT. This means that her seizures are from her anemia, not from some other brain issue. She has had a very hard 11 months at life! All starting from being stubborn and not coming the way we planned! One "issue" has just lead to another. From loosing one pound her first week of life. From there we had blood tests which showed nothing wrong, so the only thing we could do was pump and feed through the SNS every hour and a half at night and 3 times a day. It took us months to get off that program and to finally have her start gaining weight!

Then she ended up with RSV. Then ear infections. And the list could get long from this point. ;)

At 6 months she started her new thing (and probably the worst of all...) not being able to catch her breath when crying. Every time she started really crying, you could bet she'd turn this awful color blue/grey/purple, her eyes would start twitching and she would pass out. It started out only every once in awhile, but ended up coming on strong and being several times a week. We would average her passing out 5 times a week, but sometimes it was more.

At this point, her iron was really low, so we tried everything to get it up. Our Dr told us that her passing out was most likely due to the anemia. It was most likely the culprit of her not gaining weight her first 6 months as well.

When her iron levels just wouldn't go up, we were told she would grow out of the breath holding (by age 2 or 3) and to just "keep her happy". (And this kid, while feeling icky, is NOT easy to keep happy!!!)

But when she passed out and started having seizures, we decided we better do something else. (Because frankly, I don't want to live with passing out 5 times a week, AND seizures until she's THREE!)

We scheduled the EEG to rule out that maybe it wasn't the iron, and at the same visit we gave her an Iron shot. (Nasty nasty nasty shot that has to be given in the muscle. She of course passed out during it.) !

Well, I'm terribly happy to report that the nasty iron shot has mad a HUGE difference! She has only passed out TWICE since the shot. The shot was given 2 weeks ago. This is HUGE! This is wonderful! She's even been better in the car recently!

We have a few "trained" habits we need to start working on getting rid of. The most challenging is that she still wakes up every 1-2 hours to breastfeed at night. It's something she's trained to do from her time nursing as an infant with the SNS. We won't be giving up nursing anytime soon I'm sure - In fact, I'm sure she'll be my longest breastfed baby which is just fine if that's what she needs. She's still ultra clingy to me, but it'll go away in time.
She is starting to show a lot more personality, and she's getting ready to walk. She'll stand on her own for little spurts at a time.

We're just feeling so HAPPY to be in the beginning stages of "normal" with her!

Look at my happy, healthy baby!


QueenMeadow said...

I'm so happy that things are looking up for her (and you!!) I'm sure it has been very trying and exhausting for you.

Go Madison, go!

Backy Carkan said...

Heidi! I am so glad that things are turning a corner with Reagan! You both deserve some smooth sailing now! Good luck! Reagan, keep up the good stuff!

(chandelle) said...

what a beautiful girl, and she'll be so strong to have overcome so much. hooray for you, mama!