Wednesday, June 27, 2012

Summer of Big, Bold Prayers

Sometimes I forget to pray about things that seem like they are never going to get better. Like Maggie's neck and her inability to eat. But my grandmother always reminds me not to cease praying for these important things. God hears our prayers, but His timing for answering them is mysterious but also perfect. We cannot give up praying for our children's needs.

So this summer I am praying for big changes:

1. Her Neck- She has a Botox injection next month and I am praying it really helps. Even though one muscle in her neck was cut, there are many other muscles that have been tightened because of it, so the doctor injects Botox into several muscles. Then it's up to us to stretch and do strengthening exercises. We have been kind of lax on those because of her broken foot and my pregnancy restrictions, but I've made up a new notebook with pictures for her nurse to help me with these things. So we are rededicated to these important exercises.

So first bold prayer : for big improvement in her neck!

2. Feeding-Maggie is doing an intensive 5 week feeding program at Baylor this summer. I'm not expecting that she'll come out of it not needing any tube feelings, but man oh man wouldn't it be nice if we could reduce the tube feelings? It would be great not to have to feed Maggie through a tube, which takes 30 -45minutes, four times a day.

My big, bold prayer: for Maggie to eat more volume of solid foods and take more liquids by mouth - a "jump start" to her eating by mouth!

3. Potty training- this seems silly, I know, but the fact of the matter is that we won't know if the spinal surgery Maggie had when she was a baby really worked until we start potty training (that lower part of the spine controls bowel movements). I haven't spent a lot of time worrying about this over the past few years, but of course it's always in the back of my head. We started trying potty training a few months ago but had to stop after she broke her foot and couldn't walk.

So third big, bold prayer: For success in potty training so mommy can cross of one more medical concerns off her list!

Speaking of medical stuff, Maggie has had two big accomplishments lately:

1. Her pulmonogist (lung doctor) "graduated" her, meaning he doesn't need to see her any more! And he stopped her daily inhaler! It's really amazing to think that Maggie has been so healthy considering what her outlook looked like when she was a preemie. No pneumonia, no hospitalizations.

I remember when the NICU nurses told us I couldn't take her out for two winters (meaning no Sunday School or anything like that until she was two!) I scoffed at first, but honestly, they were right. I admit, I have been a little crazy about hand- washing and avoiding sick people for the past two and a half years ( thanks to my sweet friends who were very understanding about my nuttiness!) But it was totally worth it. If she had gotten pneumonia one time being that little it could have affected her health the rest if her life. So we thank God for His protection over her and thank Him that she's now old enough to not be so isolated.

2. On that same note, Maggie went to church for the first time last week! For the past two years Justin and I usually took turns taking ML to church. Maggie always asks to go, but we just haven't been ready. Sunday school rooms are known germ fests and It wouldn't be like school where her nurse can purel her hands constantly.

But on Sunday morning Justin tossed up the idea - and after panicking about it for an hour- I agreed. She was so excited! I felt bad showing up announced at the nursery with a child in a halo, so Justin stayed in the class with her the whole time. And probably will a few more times (I know, I know, we hover!) I just don't want to overwhelm the sweet volunteers on Sunday morning.

But Maggie did have a great time!

So prayers and praise all around for what's happening in Maggie's life.

Going to church with daddy...

Friday, June 15, 2012


If anyone has seen me around lately and thought to themselves that I look a little "rounder" around the edges, well you're right. I'm particularly round around the middle because we are expecting! Baby is due around the holidays.

Yes, we've kept it quiet for a while. I think because I'm scared to get too excited. As much as I wanted a "normal" and "happy" pregnancy after Maggie, let's face it, it's probably not going to happen after such a traumatic experience. As a precaution doctors have me on strict orders not to lift anything heavy, including Maggie (that was fun with her broken foot and five pound halo...) and to basically "take it easy." In other words, walking down the street to a neighbor's house makes me feeling like I've done too much. Then I spend the next hour worrying that I've ruined everything!

The thing is that, despite every test imaginable, doctors cannot really say why PPROM happened to me. It was most likely a fluke. So that kind if makes all these "precautions" a little more maddening (although I am glad for them if that makes any sense!)

I know, I know. I've written so much about God's sovereignty and His perfect plan. And I do believe it. Everyday I have to push myself to pray all these things out...especially now that I am about the same gestation that I was when my water broke with Maggie. (Hard to believe that happened at 14 weeks?)

I know this baby is in God's hands no matter what happens, just like Maggie was and is. But oh how I pray for a healthy and easy pregnancy and healthy baby after this is all over!

Anyways, we are are so thankful and so excited and wanted to share the news ...

Sunday, June 10, 2012

Summer time

Maggie is still wearing her brace most of the day, but we don't want to deprive her of too much summer fun so we will take it off for pool time and special occasions like a friend's recent princess birthday party.

My friends keep commenting that her neck is looking so much better. I hope so, although her therapists think she should have made more progress. I wish so, too. I'm so tired of these neck issues. It's a daily struggle to get this feisty two year old to wear her brace.

She's having more Botox next month and then in August she's enrolled in an intensive feeding program. My prayer is that it helps and not backfires (sometimes it does). Right now Maggie is drinking water and eating (and then mostly spitting out): pretzels, pepperoni, okra, pickles, goldfish, and well that's about it. Any progress on the feeding front is great. But it is all very slow. I'll admit that it's much easier to skip the "sit down and offer her food three times a day" part and just go right to the tube feeding. Sometimes I admit I do. But then I remind myself that this child has to learn how to eat, and it's totally in my responsibility to expose her to all things food. So even though she usually throws, spits, or plays with the food I put out for her-and it all usually ends up in the trash-I have to hope that one day it will pay off.

I do look forward to the day when I can sit both children down and feed them a meal and be done. No more tube feedings - oh how wonderful would that be! Will it ever happen though? That is my prayer!