Monday, February 18, 2008


I'm not very good at tracking Evan's development (except in my brain), so I'm going to try to track it here. (I'm also going to "try" to blog on a somewhat regular basis). So first, I'll rewind to the early days. When he was born, we didn't know his Fragile X status.....which was our choice. Throughout my pregnancy, I told myself that he probably did have the mutation, but there was always that small sparkle of hope that said, "Wow, can you imagine how great it would be if he didn't???" I'm glad we did it that way, although from day one, I was "checking him out" for signs of FX. The first thing that I noticed was that the roof of his mouth seemed awfully high (he had an awful time learning how to breastfeed), but I never had that confirmed by the doctor because I didn't want to "find out" yet; I just wanted to love my new baby! He also had a definite preference for being held facing away from me which I first noticed at 4 weeks. John and I made a quick trip to the mall to pick up something, and we forgot the stroller. I tried carrying him facing me, and he squirmed and whined until I turned him around. I treasure the few times times that he actually wants to put his head on my shoulder (they're rare occurences, but they do happen :-)

He rolled over at 3 months, both ways by 4 months. He also babbled quite a bit. When he turned 6 months old, he could sit up, unsupported for 10 minutes. He was also saying "Da da." Even though he was hitting these marks, I couldn't let myself believe that he was not affected. So, I told my doctor that I was ready to have him tested. He said that if I could wait, doing it when he turned 1 would mean he could have that blood drawn when he was tested for lead. I agreed.

I don't remember the exact age, but he was clapping before he turned 1, and at 11 months, he could say "Hi," well, that is for at least two weeks he could say it. It's now one of his "lost" words. At 10 months, he was doing an army crawl, actually crawling didn't happen until around 12 months. For a couple of weeks, he did a whole arm wave. He took his first steps at 13 months---around 8 steps----and started walking independently at 15 months.

Although we had him tested at 1 year, we didn't get the results back for 2 months! The first results were "inconclusive," but eventually, we got the result back that he had the full mutation in 95% of his cells......hey, in 5% there is a premutation....maybe those 5% can work some overtime :-) I cried hard for a day and a half, prayed about it, and woke up the next morning with an extreme feeling of being at peace. I still sometimes get angry and sad, but I don't let those feelings consume me.

Back to lost words, which is something my older boys didn't do. Like I said, he could say "hi" for 2 weeks. He also said his version of "Chelsey" for a few weeks. Around 15 months, he said "sock" approximately 7 times. He also said "up" 3 times. From 15 months until around 18 months, he would say "Whose that!" when we would look at photographs on the wall. At 20 months, he started to say "ball" (which he stills says now that he is almost 22 months). Also at 20 months (for a couple of weeks), he could say "dough du ball" (translated to "throw the ball.") Technically, he hasn't said "Ma ma," although he does make the "mmmm" sound, and sometimes, it would sound like "ma." Recently, he has been saying something that sounds like "Mom," and I think I've heard "juice." I thought we were going to skip "flapping," but he started doing that around 15 months.

His favorite activities are looking at books and playing ball. He loves to be read to; his favorites right now are "Dr. Seuss's ABC," "Green Eggs and Ham," "The Three Bears," and "Dora's Bedtime Adventures." He also loves music, Raffi is his favorite. When he was younger (6-8 months), he was fascinated by the CD player when I played his music. He likes "Goodnight, My Angel" (song by Billy Joel, book illustrated by Yvonne Gilbert). I sometimes hold him and I sing along with the song as we turn the pages. It also seems to be a great calming tool for him. In the evening, I'll turn the song on (repeat a couple of times), and he'll flip through the book. It seems to work well when he is fussy. Oh, and he LOVES to be outside.

He's not the greatest eater or sleeper, but we're working on both. He's underweight, so every bite counts!


FXSmom said...

Evan is such a cutey. Thanks for introducing him to us :)

Kim said...

That's for sharing that Aunt Jen. In the short time that I've been facing things with Tyler I've learned that my biggest fear is that people will see him for what he isn't, instead of what he is. Because of that I've determined to make a much bigger effort to see others for what they are....even if they're just the people standing in line with me at Wal-Mart.

fragilemom said...

Boy, you've really motivated me to be a better tracker of David's development. I am better at tracking and recording his than I was with James (mainly because his diagnosis didn't come until 18 months). David is quite weak. He's almost 10 months and doesn't sit up (not even for 5 seconds), doesn't crawl, doesn't hold his bottle (unless I put his hands there and help him keep them there).

It'll be fun to track together! Keep it up.

I also have the same fear as Kim. My kids are soooooo awesome and so fun. I hate the stares sometimes, and mostly think "Wow, you're really missing out on my child!" Then sadly enough, when I hear or see "typical kids" screaming and throwing a fit and mine not, it makes me feel more okay, and proud that it's not mine at the moment. :)

Jen said...

Yes, Donna, we'll track together. I didn't do a very good job of that with the older ones.
I do remember, though, that Kyle's development was very delayed. He didn't walk until he was 20 months.

Worst comment that I heard with my kids: I had all three kids with me at Wal-Mart. They were around 7, 5, and 3. Rarely, could I make it through without the boys screaming and crying at the end. Kyle would get attached to something as simple as a role of paper towel, and when we had to give it to the cashier, the crying would begin (if it hadn't already). And if Matt wasn't crying yet, he would start. Well, this one time, we were at the check-out, and the boys were both having melt-downs. A woman in line behind me said to the person behind her, "I hope she doesn't have anymore kids, she can't handle the ones she has." I just felt like saying 'you just walk a day in my shoes.' I would put at least twice the effort into my kids and get maybe half the results that a mother with "average" children would get. Back then, I wasn't strong enough to say anything.
I used to feel sorry for myself because of the whole Fragile X thing. But over the years, I began to feel sorry for people who didn't know my boys. I feel privileged to be their mother; they've enriched my life. And of course, I have an AMAZING daughter. I'm very proud of her.

Kristiem10 said...

He is adorable. And it sounds like his development is going well. We've had some disappearing words here, too.