State Fair

So we went from not knowing if we were going to go to the Fair this year (nap schedules, tantrums, and so on) but we ended up going twice! Fabricio and I have never been to the State Fair twice in any given year, so this was a first for us. Camila loved it, and keeps talking about going back. I told her it was done for the summer, that it was going to be too cold, etc., but that backfired b/c now that we're having this amazing fall weather she thinks the Fair is open again. She still loves the carusel, but she also had a blast on this mini tilt-a-whirl car thing. And of course, the cotton candy was a great treat. Amelia had a great time looking at all the things around her, and she did great missing her morning nap (until it was time to leave, which made the ride home a little noisy until she crashed.)

Good news!

Yeah! I finally heard back from the ortho, and they say that Amelia's scoliosis is actually just "positional". I need to call them to confirm (it was a voice mail) but my understanding is that the curvature was just from the way she was positioned during the x-ray. (Try getting a ticked off 10 month old to lie absolutely still.) Although I wish we hadn't spent the last week worrying, I'm surprised and relieved that everything is ok.

On another note, Amelia started crawling 2 weeks ago. She is slowing building up speed, but she's already getting into trouble. For example, Camila has a table fan sitting on her floor. (I only plug it in during naptime/sleeptime.) Amelia tried pulling the cord out of the wall to get the fan into her lap, and almost succeeded. But we're willing to put up with all the trouble-making since the crawling is doing great things for her tilt! She is building up neck/trunk muscle strength so quickly. She is getting 2 more teeth and has the worst cold she's ever had, and her tilt is not regressing! It's never been like that. All summer, it seemed like that tilt would be more pronouced (it never went away completely) whenever she would even sneeze. I'm excited to see what a few more weeks of crawling will do!

Amelia update part II

Just a quick update -- We heard back from Gilette's this morning, and found out that the x-rays we had done at the beginning of Sept show that Amelia has scoliosis. It appears to be mild, a 16 degree curvature in her upper lumbar, but I'm now waiting to hear from the ortho team as to our next steps. Infant scoliosis is very rare, so I'm really not sure what they'll want to do. I'm assuming they'll want to follow/observe her for a while to make sure it doesn't get worse. Although depending on my conversation with them, we may end up scheduling an appt with them at our Nov follow-up for her tort. The nurse couldn't tell me much about it, such as if the tort and scoliosis were related or not and if that's why her tort is so persistent, but it feels like we have one more thing to worry about. Maybe best case scenario is that the scoliosis is making her tort look worse than it really is, and she wouldn't need the neck surgery after Nov but would have to wear a back brace instead? I'm just not sure what to think at this point. I'll post again when we know more.

SMA Fundraising Update (Baby June)

A couple of weeks ago I posted about a fundraising effort I'm part of: Molly's Mommy Friends. We are trying to raise $10,000 towards SMA research in honor of Molly's baby, June. I wanted to post an update for those of you that follow my blog (as quiet as it's been these past few months) but also for those of you that may pop over here from time to time. If you haven't donated, please consider it. If you're considering it, please take that next step and donate. Thanks!

In the few weeks we have been active, Molly’s Mommy Friends has raised over $2,000 for the Gwendolyn Strong Foundation. Good Job Mommies! We still have a ways to go to reach our goal of $10,000 by October 5th. Please continue to get to the word out. Here are a few ideas on how:

1. Send an e-mail request with a link to the donation page.
2. Have a blog? Post the link for your followers to see.
3. Are you on Facebook? You can post the fundraising link to your page. You can Twitter it too (say that really fast 3 times.)
4. Prefer pen and paper? Mail letters to friends and family with the page link or request a check (we can send checks to GSF.)
5. Get your children involved, and make flyers to pass out in your neighborhood.
6. Visit your local businesses and ask them if they would be willing to donate a portion of the sale of something to GSF on behalf of Molly’s Mommy Friends.
7. Have a party and charge admission with a portion going to GSF.
8. Have a tag sale and donate the proceeds.

The possibilities are endless. If you ask ten people to donate $10 that’s $100. If ten Mommy friends do this it's $1,000. Small steps (or in this case, small donations) can add up to something significant.

Thanks again for helping with this special cause and for honoring June, our SMA angel.

http://www.firstgiving.com/juneangelbaby

Amelia & torticollis update

I'm sorry I have been so bad about updating the blog, but this summer has been kind of stressful, to say the least. I've definitely enjoyed being home with the girls (although Camila can still be a challenge) but the primary stressor is Amelia's torticollis. We were making great progress up until early June. So much progress in fact, that the PT wanted to reduce sessions to every other week (we go 1 hour weekly.) Well, the week we were going to drop the frequency is when Amelia started having a regression. Turns out she was getting a tooth, which can cause regressions. But, it lasted over 10 days. Fast forward to today, she's had 4-5 (6?) regressions, most lasting 10+ days, so she really only has 2 good weeks then 2 "bad" weeks. And she still tilts when observing her environment (rather than actively playing.) We've been doing weekly PT since she was 3 months old; she's now 10 months. Seven months is a long time for therapy, and seeing her tilt.... Needless to say, we've frustrated, and very, very worried.

After talking to her pediatrician and PT, we decided to take her to a neurologist and an opthamalogist to rule out other things that may be a factor in her persistent torticollis. Setting up that neuro appt was the scariest thing we've had to do. It's terrifying to think that your baby may have some neurological impairment. Fabricio set up the appt b/c I couldn't even bring myself to make the phone call.

We had her neuro appt last week, and fortunately everything looks fine. We then had her eye appt today, and everything looks fine there too. So, while that's great news in general, it's also frustrating b/c we still don't know what's causing this darn tilt to be so stubborn. We also took her in for a 2nd opinion with a different children's craniofacial team, and this doctor wants us to continue PT for 2 months, then come back for a follow-up. Next step with him will be surgery to release her SCM muscle. We would then be back at square one with her, and doing another 6 months or more of PT.

When Amelia was diagonosed at 2 months, we NEVER thought we'd be still doing therapy at 18 months (which is what will be the case if we have to do surgery.) Thank God Fabricio has good insurance. And thank God I was able to leave my job, as I'm not sure how we ever would have made this work with both of us working full-time. And I doubt she'd get much home therapy at daycare, as no matter how great daycare is, it's hard enough for me to do as much as we need to. There's no chance a daycare provider would have enough time. As it is, I feel like we're doing exercises ALL THE TIME. I never get to just sit and enjoy playing with her. I'm always trying to get her to look a certain way, use a certain hand, put weight on a certain leg, practice standing, practice crawling, doing quad play, doing tripod play, practing sitting to stand, practing elevated sitting to stand. And whatver else PT wants me focusing on this week. You get the point.... And yet she still tilts and we may be looking at surgery in a few months. We'll continue doing weekly PT until then, as much home therapy as possible, and pray that we'll make enough progress by November.

There's one thing that this experience has taught us, however, and that's just how true the cliche "it can always be worse" really is. While I wish to God Amelia didn't have such severe torticollis, I've seen other babies/kids at the Rehab center, at the neuro, and at the opthamalogist that make me realize that we're lucky that she "only" has torticollis. I've seen children fighting cancer, children who are partially blind, children who are unable walk, and a child who is unable to breathe on his own and his mom has to pull/push a portable ventilator in a wagon.

So, if more PT or even surgery is what it takes to help Amelia hold her head correctly, avoid future vision impairment, and not develop a learning disability, then that's what we'll do.

In Memory of Baby June

You may have clicked on the blog I follow, BABY BABY, and know that my friend Molly lost her baby June to Spinal Muscular Atrophy (SMA) after only being with her a few weeks. It was a devasting loss, as they did not know they were carriers until Baby June was born.

I am participating in an online fundraising effort through the Gwendolyn Strong Foundation for SMA. We are trying to raise $10,000 by June's birthdate, October 5. If you have been touched by Molly's story, please consider making a donation in June's name. Here is the link:

http://www.firstgiving.com/juneangelbaby