Friday, December 14, 2012

2nd week of Advent

--- 1 ---
Many many things of note have happened this week. Let us begin with Sunday, when our dear friends let us keep 5 out of 6 of their children. Two of the kids are Paul's age range, are boys and give him someone to wrestle and box. It is lovely when I am not the one being punched and the person who is thinks it's a fun game. There also is a two year old boy, and there are twins, all of whom are perfect and wonderful. Even though that is the case, I still can't remember why I thought it was a good idea to put together bookshelves that day. Needless to say, the shelves are not done.
--- 2 ---
Scott's mom came into town on Monday to celebrate Paul's 4th birthday (which was on Tuesday, but that was a busy enough day!) True story, I can't remember what we ate for dinner. Oh, wait, pot roast. Scott took the day off work because I'd been grappling with a virus, and we had a really lovely day. I made grain-free pumpkin bread with a pumpkin spice whipped cream frosting. All was delicious and well received by the kids. 
--- 3 ---
Tuesday things got crazy. Once again, I hardly remember the morning, but I do know I had quite a few things to do. That said, I was able to drop Mariana off with our friends, the ones whose children came to our house, and take Paul and some buddies to Wreck-it Ralph. Unfortunately one of his buddies got the business from his mom for some potty humor right before we left, and Wreck-it Ralph has quite a bit of that. Oops.

A lot of people gave me looks as though I was a martyr when I told them my plans to take four young boys to the movies. I really thought they were weird. While the boys were really perfect during the movie, I have to say I've never understood the term "herding cats" so well in my life. These boys just took off the minute they were out of the car. Luckily I parked near the sidewalk, so there was no parking lot safety issues. But holy cow, girls and boys are totally different.

That night was a normal night, only Paul got to snuff the Advent candles -it wasn't his turn- and he had a few gifts to open.
--- 4 ---
Wednesday may take a while. Mae had her Developmental specialist meeting and met with her new OT. Luckily it was at our house. We have had it made clear to us that keep Mae slightly quarantined is our primary obligation this winter. I will get into that later.

The basic run down of Mae's assessment is that she is doing very well. Her gross motor is on target, though she is low tone in her upper body, it is only partial. We must keep working on crawling, but her gross motor is good. Her fine motor is also on target, but we must work on her pincer grasp, and her sign language. Most of the feedback was to keep up our work with her because she is close to on target.
--- 5 ---
Mae's 9 month check up was Thursday. This is where I lose it. She is 15lbs, so she gained 11oz in a month. Yay! The pediatrician did say she wasn't too freaked out by that plateau earlier because it looks like a normal curve. Most babies plateau around 8 months because they are more active, and since our OT has upped a bit, the doc wasn't freaked out now that she's gaining again.

During her appointment I explained that on Wednesday Mae had begun to say Ma-ma. Two syllables instead of her normal, "Ma-ma-ma-ma-ma..." Doc lit up and began telling me this is a 12 month skill. I also explained that she is signing for milk and starting to point. Again Doc became almost giddy. Pointing is a 12 month skill. Also, early communication skills are directly linked to IQ. This doesn't mean if your baby doesn't talk s/he will have a low IQ, because most babies communicate well before they talk. But for Mariana, for obvious reasons, this is a huge deal.

I am scared to be happy. Predicting the future is not my favorite game. I am happy she is progressing and beginning clear communication, but there are a million and one What-ifs. I do not want to put too much into this report lest I get caught up in fooling myself that Mae is "just fine". She needs our help with everything, we can't leave her to develop on her own. That said, it is lovely to have all of our hard work pay off in the form of impressing the professionals
--- 6 ---
GI update: Clear x-ray! No indication of a physiological reason for her issues, and prune juice is keeping things moving. HURRAY FOR PRUNE JUICE!

Our ped told us that the flu season is practically killing her practice with overtime. She was very firm about keeping Mariana protected, which reiterated what the GI doctor had said. We are to stay away from malls (no Santa photo!) and keep a strict hygiene routine. We cannot travel, we cannot host travelers. Boo hiss.
--- 7 ---
Now the REALLYbad news. So all three pros (Doc, Developmental specialist, OT) stated that children with Down syndrome tend to have a stubborn streak that beats all. This has been witness by me in Mariana's refusal to do OT many times, and her refusal to sign what she can. And it is clear refusal, not confusion. We are facing some bedtime issues with this one, and my tenderness toward her condition does her no favors. Pray I get through this. I know she'll be fine, but my nerves are frayed as it is. And to think, I'm the militant mama in my family!
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