Milestone's and more

Milestone's are a big deal at our house. This comes with a pretty long story so get ready. Some of you are new to my life and don't know this story. Those of you that have been with me for a while (or always) feel free to skim over this post. It's ok, I won't be offended.

My pregnancy with Claire was less than stellar. The first trimester was filled with me getting sick 3 times a day and feeling like death warmed over. It wasn't fun at all. Justin has a genetic disease which meant many ultrasounds while I was pregnant. The first one we had with Claire turned our lives upside down. To make a very, very long story as short as possible, we were told that they thought she might have Down Syndrome. We did the testing which showed us that it would be a good idea to do an amniocentesis. We did that and the test came back negative - saying that the baby, which was for sure a girl, didn't have Downs. THANK GOODNESS!

I had a very hard time breathing when I was pregnant with her, so much that I had to take medical leave from work. Finally the day came that she was to be born. I had her via c-section on Friday, April 22, 2005. My doctor went on and on about how much she looked like Nathan. I agreed that she looked like him, but there was something different about her. I couldn't put my finger on it. Without a doubt she had my nose. Was that what made her different from Nathan? I couldn't quite figure it out.

She went the first 52 hours of her life without pooping. On Sunday, the doctor came in our room and sat down. He said that he needed to talk to us about the baby. He said that we needed to talk about Down Syndrome. I stopped him. I wanted to make sure he knew everything we'd been through in the pregnancy. I wanted him to know that if he was going to talk to us about her having Down's than he better be serious. We told him about the amneo that I'd had and that it was negative. He said that he wanted to look at the test results himself to make sure they didn't test my chromosomes instead of hers. Justin was instantly angry. For me it was different. I totally saw what he was saying. That was the difference I'd noticed myself. He said that she had 3 characteristics of a child with Down Syndrome:


1) A simian crease. (That's not Claire's hand, but that's exactly what her hand looks like)
2) Wide spaced eyes with a flat bridge nose.
3) Wide spaced nipples.

Many kids with Down's have bowel problems and he wasn't sure if this was the reason for her not pooping, but with the other characteristics she had, they had to explore the possibility. Someone could have punched my lights out and I would have been just as stunned.

They ended up doing an x-ray to make sure she didn't have some sort of blockage. That was clear. Then they did a suppository and that got her moving slowly but surely.

The doctors came in and said that they didn't believe that she had full blown Downs, but thought she possibly had Mosaicism. They could do a blood test, but it wouldn't tell us without a doubt if she was Mosaic or not. We finally did the test at the end of June (2005). The test came back negative. Due to the fact that the blood test wasn't 100%, the fact that she might be Mosaic never was far from the back of my mind.

Then when she was 10 1/2 weeks old she got sick and had to be put in the hospital. She was septic when I took her to the ER (Justin stayed home with Nathan). Neither of us had any idea just how sick she was. Unfortunately we never found out what was wrong with her. She spent 3 days in the hospital. Then a month later she had to be in the hospital again. This time she was dehydrated. Any time she started to get sick she'd stop eating. Due to the pattern, she was in the hospital a month and a half later. That's 3 hospital stays in 6 months. Ugh!

After all of this we noticed that Claire wasn't hitting milestones. Actually, she started to fall into the black. By 9 months old she was pretty behind. We contacted the people at Easter Seals and they came to our house to evaluate her. The results showed that she was borderline in need of their services. One of the people that evaluated her agreed with me that Claire's arms seemed puffy (notice picture). We took her to the Mayo Clinic to have her looked at. We were checking to see if she had Justin's genetic disease in her arms (his is in his leg). It turned out that she has a mild case in her arms, but the good news is that the doctor said that there is no way she has any form of Down's. She functions way too high to have Down Syndrome. You have no idea what those words meant to me. They were worth their weight in gold - and more.

The pediatrician we saw at Mayo was a wonderful doctor and such a nice man. He said that he thought Claire was too busy fighting to stay well to meet the milestones that she's missed. He said "I bet you within weeks she's walking." Sure enough, by the next week, she took her first steps. She was 15 months. After that, there was nobody that could hold her back. She just went crazy from there. It was like a total metamorphosis was taking place before our very eyes. Once she got caught up, she started to advance. She was meeting milestones before she was 'supposed to'. It was amazing.

The reason for this post was an e-mail that I got from http://www.babycenter.com/. I love this site. I get e-mails that I would guess many of you mothers of young children also get. It tells you what you can expect from your child (ie: milestones). I got one last week that said this: Your toddler can probably hum and sing songs such as "Twinkle, Twinkle, Little Star" and make three-word sentences like "Cup fall down." I didn't need to read any farther to see if Claire was meeting her milestone. Before I'd sat down at the computer she said "I'm gonna get you mommy, I'm gonna get you." A full 9 word sentence. You've come a long way my sweet little Peach, you've come a long way.