I've been wanting to update on Maggie's health issues, but have been hesitant because I'm sure people tire reading of our struggles and needs. But I cling to the hope that God hears and answers our prayers, as He already has showed us so many times, so I pose these updates as prayer requests for our sweet baby:
1. Her neck: We stopped the e-stim two weeks ago after our therapist left. We are waiting to get a prescription for a machine for home use and to see if insurance will provide one. I know we will get one somehow, but the discouraging news is that ever since we stopped the e-stim Maggie has ceased holding her head up on her own. I'm not sure what this means long term, but I have been deeply discouraged. I just never thought she would backtrack so fast. Please pray that she would start holding her head up again and permanently. Every baby/toddler I see I can't help but look with fascination at how they hold their heads up and then be so discouraged that mine can't do the same.
2. Vomiting - it's unbelievably bad and has been for a while. I just have gotten used to it, but a few weeks ago I realized (once again) that it's not normal for a 23 pound baby to not be able to hold down 4 ounces of milk. It's like a geyser of vomit is always waiting inside Maggie and anything will set it off: crawling, laughing, crying. The sad thing is she actually is showing interest in big people food (she's done with purees). But if we try to give her a saltine or watermelon or anything solid, as soon as she swallows it she gags and throws up all her milk. Thus we are faced with a conundrum: We want to encourage her to eat but if we do, she will vomit all the time and lose weight. Bottom line: the child will never be able to eat unless we get the vomiting figured out, and her GI can't seem to. I still think it's the placement of the button and keep asking if we need to
"start over" with a new incision for the button, but still have been given the "let's wait and see" answer.
3. Botox- Part of the "wait and see" answer involves another Botox round in her stomach and neck on June 20th. Please pray for her not get sick this week so she can go under anesthesia for the Botox. It has been a complete nightmare getting this thing scheduled with the two doctors so I just want to get it over with already. Please pray for no complications and for it to help her neck and vomiting and not hurt her.
4. Doctors- I am questioning again if we need to seek out other opinions. Frankly, I'm so exhausted and burned out. I don't want to drag her to another doctor or worse, another city, to be told the same things we've already been told. I'm praying for wisdom on this decision.
5. Protection- Last night about 10 pm I heard Maggie moaning in her bed. It's not abnormal for her to moan until she can soothe herself back to sleep. But something moved me to glance at the video monitor. There she was sitting up, eyes closed, with the tubing from her feeding pump wrapped around her throat twice. I ran in there and, thankfully, she was fine. It wasn't tightly wrapped around her throat to the point where she couldn't breathe. But if she had laid back down, she wouldn't have had enough slack and wold have suffocated. Praise to God that she didn't..
Yes, last night one of my biggest fears came true. This is why I haven't slept well in over a year- there is nothing safe about having a cord in your baby's bed. But she has to have it in order to live. She gets most of her calories during her continuous nighttime feed. And taping it down against the bed doesn't solve the problem because she moves around and could yank out her button, or worse, get caught on the even shorter tubing. Please pray for her safety and again for this vomiting issue to be resolved so we don't have to do the continuous feed at night. (I sure hope my mom doesn't read this post... she'll never sleep again either!)
Thank you for keeping us in your prayers as always. I know God will lead us to do the best thing for our daughter- I just need patience in getting there...
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