Much needed updates!

A week and a half ago I posted about the Spina Bifida Worldwide Day of Prayer, and I haven't updated because there was news I wanted to share but didn't have permission yet. The day of prayer started in response to one woman who is pregnant with a baby who has Spina Bifida, and she was considering terminating the pregnancy. Last Wednesday was her first appointment with a pediatric neurosurgeon (and I have to say, most people who terminate do not go through with this step, and it's very important), so that was the significance of making that the day of prayer. We prayed for her to have an open heart and mind and for the doctor to give accurate and hopeful news.

What an amazing day that was. There was so much excitement and anticipation leading up to it, as we (other SB moms and I) spread the word on our blogs, through emails, to our church groups, and on Facebook. On Facebook alone, there were THREE THOUSAND people who committed to praying at the same time! And that does not even count the numerous prayer chains, prayer groups, family members, coworkers, and strangers who were not on facebook but heard about it anyway. And let me tell you, it was powerful, and it felt great. I knew that, no matter what this one mother decided, there were thousands of people with their eyes toward heaven praying for the futures of babies with Spina Bifida, and nothing bad could ever come from that. It was a rush.

That night, I kept checking my email for an update from the mom about her visit with the neurosurgeon. I finally went to bed and was reading, but all of a sudden I decided to come back downstairs and check my email again. And there was her update. The neurosurgeon told her the baby's lesion was low and small, the baby was moving its legs and looked great, and it has no signs of hydrocephalus. What does that mean? Pretty much best case scenario. She said she and her husband felt hope for the first time in weeks. They decided to keep the baby.

Praise God!!!!! How amazing is that? I still haven't gotten over it.

And yet, even after seeing the amazing power of prayer, I sometimes still have trouble practicing it in my own life. Just this weekend, I realized how terribly worried I have been about Nate. Not just about one thing, but many areas.

1. His school. Yes, I know he's just in preschool! A couple weeks ago I went to his parent-teacher conference, and his teacher mentioned that there is a man coming to observe Nate for a program for children with physical limitations to see if he qualifies, and he will be at the meeting where we discuss Nate's transition to Kindergarten. First--whoa--I have to start thinking about Kindergarten already?! And hold up! A special program?! Still, I'm getting anxious just typing this. I wasn't expecting that. I just thought he'd go to the same school he's in now, with an IEP. I asked, aren't there other kids with physical issues at this school? She couldn't think of any. Really? So I've been doing a little research about it, and maybe it will be a good thing. He would be in a regular classroom all day--they'd just maybe have an aid or co-teacher in the class to help Nate (and others) when needed. Then there's the whole issue of which school Nate should go to next year, and we're looking up test scores and ratings. Then there's an issue with the playground at school--there is just nothing on it that Nate is able to do. I hate saying that because I am definitely NOT one of those moms who says such things in front of my son or announces what my kid can't do, but the reality is he can't do anything on this playground. It's not at all accessible, and it's hard. They won't even let the preschoolers on parts of it because it's dangerous. So Nate is just running around by himself or getting in trouble for throwing mulch--well, what do you expect him to do? The PT's answer to this was to bring a tricycle for him to ride. Um, that would be great, except he'd have to be 100 feet away from all the other kids to ride the trike on the concrete pad, and he already has trouble engaging with the other kids--that's even an IEP goal! I'm just confused and not happy, and I'm calling an IEP meeting, dangit!

2. Nate has some major sensory stuff going on right now. For about a month, he has been putting his fingers in his mouth. Why? I have no idea. Apparently he needs "oral sensory input." But, it's cold and flu season, and that's just not sanitary. So I bought him this chewy necklace that's specifically made for this purpose, and we're encouraging him to chew on that instead of his fingers until this passes. Now he's getting in trouble at church and at home for swinging this necklace around and hitting others. Sigh.

3. His seizure meds come in sprinkle caplets, and twice a day we have to mix them in pudding or yogurt or something. And twice a day it's a battle. So at our last visit to the neurologist, we asked if there was a liquid version--yes! The way it's mixed, it only lasts two weeks, so we have to refill twice as often, but it was so worth it when for two weeks, we could give him his medicine twice a day with no fight. The second time we picked it up, the pharmacy said that Medicaid is now refusing to pay for it. Medicaid has never refused to pay for anything. So after our primary insurance, it was going to be $45. Twice a month. No, we aren't going to do that. So now we're appealing it and back to the sprinkle caps and hating it. I know this sounds like a very minor thing, and it is, but it's discouraging when it was just so easy for two weeks, and pretty much nothing is easy with Nate.

4. Potty training is stalled. I don't even really want to go into it--exhausting.

This has been all that Blake and I have talked about. What do we do, what are we doing wrong, how do we fix this, why is this happening. On Sunday I realized--I haven't prayed about this stuff. Well, that's not technically true, since all of these overarching issues are ones we've been dealing with for awhile, and I finally get to the point where I just give it all over to God. But then I take it back without really realizing I'm doing it. So that's what I'm doing again. I don't know the future, and I often don't understand Nate. I have no idea what school he should go to or if it even matters! I don't understand sensory issues, and I have no idea what to do to make it better. But I'm very glad that God knows the future and will lead me in the right direction if I trust Him too. And I'm very glad that the God who knit Nate together in my womb knows him inside and out and understands all of his quirks. It's going to be okay.

Even though I worry about him, Nate makes me smile more than anything. :) Yesterday he told me, "I like trains. Trains are awesome! Click on over to I love toy trains dot com!" What? Where does he come up with this stuff? I did look for that web site and was relieved that it doesn't exist, because I would have wondered about Nate sneaking on my laptop when I'm not around! Tonight we had cheese canneloni for dinner, and he was very cute trying to pronounce it. A few minutes later, out of the blue, he said, "This is great pasta." Ha! And tonight he and Georgia were chasing each other around the living room, and he said to her, "Come on, little fella!" It's just fun to sit down and have a conversation with him.

Georgia is apparently going through a growth spurt, because all she's doing is eating and sleeping. She often eats more than Nate does, and she is always ready for her next snooze. She's now in that phase where she says, "Uh oh" and THEN drops her cup in the floor! Stinker! She is saying more words every day and can almost hold a little conversation with you. A few days ago, Alisa said Georgia pointed at her banana. Alisa said, "Oh, do you want some of my banana?" Georgia said, "Yis." Alisa said, "Yeah, how does that sound?" Georgia said, "Good." And then she ate the whole thing! She will be 15 months in 4 days.

The weekend before last we went to the Halloween party at the zoo, where the kids got to wear their costumes for the first time. Nate was in a really foul mood until he got to eat some candy. All the way home he repeated, "That was so much fun." We have a big upcoming weekend planned: A pumpkin-carving SBAK playgroup Saturday afternoon, then the kids and I will go to Aunt Mindy's house for trick or treat night in Berea, then on Sunday we'll head back home for trick or treating here! Oh, the candy.