Ease On Down Those Barbie Toes

Maggie is crawling everywhere! It started slowly, but over the last few weeks, my Peanut is UNSTOPPABLE! It's been really fun to watch her explore her world in a different way. It must be so liberating for her! And, while it means that I have to chase her around to make sure she's not getting into something she shouldn't, I am SO PROUD of her! Maggie is also beginning to pull up to stand. She is still extremely wobbly, and her muscles aren't strong enough to support her body for long periods of time. It seems like her ankles and knees buckle, and after a moment or two, she collapses to the ground. She reminds me of Scarecrow from The Wizard of Oz, right after he gets off his perch!

Our Physical Therapist, Christie, is also concerned about Maggie's lack of muscle tone. Evidently, hypotonia is common in preemies. Regular PT will help build Maggie's muscle strength. The problem with her pulling to stand when she is so weak, is that she does it incorrectly. Because she is so unstable, Maggie flexes EVERY muscle in her body to stand; she gets rigid in order to stay upright. Unfortunately, this means that she does alot of "toe standing". Think Barbie:

Maggie needs to learn to bear weight through her legs and heels. The longer she stands on tip toes, the more chance there is that her Achilles' Tendons will shorten, causing permanent damage. There is a surgery that could release her tendons if necessary, but obviously, we would like to avoid another surgery altogether. So, next week, little Peanut will be measured for leg orthotics. They will extend from the back of her calf, flex her ankle and wrap under her heel. This will force Maggie to put her heels down when she is standing, and hopefully get her closer to being able to stand independently, and eventually learn to walk.


I don't know how long Maggie will have to wear the leg braces. I guess it just depends on how she does. We will be adding monthly in-home Physical Therapy, in addition to our twice monthly regular physical therapy, just to make sure Maggie is adjusting to the braces in her home environment. I'm a little overwhelmed with the news of the leg orthotics, and the addition of yet *another* appointment. So far, we're up to OT every week, Speech every week, PT twice monthly (and now a second PT monthly), GI every 2 months, Feeding Clinic every 3 months, Developmental Peds every 3 months, and regular well-child visits with our own pediatrician in between. Oh, and I'm still working 3 days a week, so I cram all the appointments into the other 2 days.

It does seem that the surgery was the right choice for Maggie, though. She has gained 5 pounds in the three months since surgery, and weighed 18 pounds 9 ounces at our last doctor's visit. She has thrown up twice since that first time in the beginning of September, but it doesn't seem to be a repetitive problem. She is still struggling to eat, and takes about 1-2 ounces of formula by bottle, and maybe 2-3 tablespoons of baby food at a time. She still refuses any table food, and anything with texture still causes quite a gag reflex. We are working with our Speech Therapist, but it seems that time is the only thing that will really make a difference. Maggie can now swallow one or 2 little "puffs" without too much drama, and, when hungry, actively puts them into her mouth (a BIG thing for a kid with oral aversion).

I struggle with frustration over the whole eating thing. Most of the time, I am able to be patient and positive with her, but I find myself saying things like "It's just FOOD! Just eat it!" And, of course, feel terrible. It's not her fault. She is trying her best. But when a "feeding" is 15 agonizing minutes to get her to take 10 bites of puree, then 15 mins of persuading her to take an ounce of formula, then 20 mins of trying to get her to sit still long enough to finish the rest of the feeding via tube: well, it's just plain frustrating.

Lest you think I am in the depths of a preemie-mom melt down, I am proud to tell you all of my Magoo's accomplishments. Maggie is the sweetest, funniest, smiliest, calmest, NOSY-EST (others might call it curiosity, but really she's just nosey) baby in the world. She has started to hug me now when I see her in the morning, or when I pick her up from the babysitter. She still only says a few words, like Daddy and Doggie and Baba (bottle). But every once in a while, particularly when she's upset or crying, I'll get a good "Ma. Ma. Ma!" She knows a few signs, like "light", "bubbles", and of course the ever popular "All done!" She thinks she's smart, and the minute her cute little butt touches the dreaded high chair for a feeding, it's "All done!" left and right. (I've politely informed her that *I* will determine when she is, indeed, "All done!") She loves to look at books, loves to dance, and has started to show some interest in kiddie TV shows (The Wonder Pets, Backyardigans, Sesame Street, and Miss Spider are the only ones that hold her attention longer than 17 seconds).

She loves music and singing. One night, when I was rocking her in her room, she started to hum. At first, I thought she was just soothing herself to sleep, but she was looking up at me and humming louder and louder, almost trying to get my attention. I realized that Maggie was asking me to sing to her. The minute I started to sing, she got quiet, and stroked my cheek with her hand. I could barely keep from crying to finish the song. Her favorite is the Lullaby from Mary Poppins: http://www.youtube.com/watch?v=nPw6QBSggls
(those of you that know me, know I can actually give Julie Andrews a run for her money).

Moments like that make it all worth while...

~Sara