Thursday, April 26, 2012

PEDI and Peabody Developemental Motor Scale Results

We got her formal results from her physical therapy evaluation. Here's an excerpt of the 10 page report:

Click to enlarge.

Click to enlarge.

So, we have a lot of work to do. And a long road ahead.

I feel so bad that I didn't have her evaluated earlier.

Wednesday, April 25, 2012


Just got a phone call from the physical therapist's office!

Co-pay is only $30, but our insurance will only pay for 60 visits in a calender year, so we can only go in once a week instead of twice a week. That's alright. $120 a month is much more affordable than the $400 a month I was expecting!

Still trying to get in touch with Early Steps... 

Monday, April 23, 2012

Everything I Asked For

  I remember being pregnant with Lola, and promising her that she was welcome to stay as long as she wanted, that I wouldn't kick her out before she was ready to be born. And she took it quite literally and was born 10 to15 days after her due date (she had two, one based on fertility charting, and one on LMP.)

Caul baby.

When she was born, my water hadn't broken, and she was born in the caul. They say babies born in the caul are especially intuitive. I have to agree:

I wanted breastfeeding to work out so badly, and despite my low supply, she preferred nursing over bottlefeeding, so we used an SNS.

I was a butt-scooter when I was a baby, and neither of my older children scooted. I wanted a baby who did what I did!

Her big sister was walking by 10 months, and it felt like she was instantly not a baby anymore. I wanted a baby who would stay a baby for a while.

She's everything I've ever asked for, and so much more.

Love you, Lo.

Okay, so now what?

So, what now?
Lola and big sister, Lulu.

I have no idea, really.

I know the physical therapist wants to see us twice a week. If I can get her enrolled in Early Steps (if I can ever get anyone on the phone!), someone will come to our house to work with her, too. 
I still need to speak with her pediatrician regarding any genetic, neurological, etc. tests she feels we should have done. 
I truly feel that she has "Benign Congenital Hypotonia," something she was born with and will hopefully outgrow. 

Whatever the cause of her low muscle tone, it really isn't devastatingly severe. 
When she was younger, if I sat her up, she could remain sitting. Eventually, she even learned how to propel herself by scooting on her butt. When she was almost a year old, she began to be able to roll over and get into a sitting position on her own. Now, at 13 months, she has been getting into a crawling position.
It doesn't seem like her fine motor skills are affected much, if at all. 
I'm not sure if she has a speech delay or not, she says a few words now, though she really only starting babbling and jabbering after she turned one.

Whatever the cause of her hypotonia, she is loved and adored by everyone she knows.

I'm sure her big brother and sister will be active participants in her therapy.

Lola and big brother, Rio.

Saturday, April 21, 2012

Physical Therapy Evaluation Results: Hypotonia

Hindsight is always 20/20. I should have realized Lola's lack of gross motor development was more than just her doing things in her own time. Looking back, the signs were all there. I even brought my concerns up with her pediatrician, but I thought I was just being an overly worried third time mom. And chasing her older siblings didn't leave me much time to stew on it. 

She was such an easy baby, once she got over the initial starvation due to my low milk supply (which in fact may have been exacerbated by her low tone). 
She didn't like to spend time on her back or belly, but if I put her in a sitting position, she could hold herself up. She would sit, legs splayed, and play with her toys, quite content to stay in one spot.

I called her "yoga baby" when she would have her legs flat on the floor and bend far enough forward to nearly touch her forehead to the floor. 

Yoga Baby.

I keep going through my facebook photos, looking for evidence I must have glossed over before. Like, how did I miss the head lag when I pulled her up? I guess, because... I didn't miss it, I intuitively supported her neck when picking her up, so I never actually saw the lag.

At her 9 month visit, her pediatrician wanted to have her evaluated for a gross motor delay, and I thought she was crazy! Lola was scooting around on her bottom, so she was mobile, even if not in the most conventional way. I was a scooter, as well. I wanted to wait and see (forgetting my earlier concerns. I guess the fact that she was mobile threw me off.)

When Lola hadn't added any new gross motor skills to her repertoire, I realized it was time for action. I made an appointment for a Gross Motor Delay Evaluation. I started consulting Dr. Google, looking up "super flexible 12 month old not crawling" and got hit after hit talking about low muscle tone. And it sounded just like my Lola.

So, I shouldn't have been surprised when Susan, the physical therapist, said the word "hypotonia." But for some reason, I expected a quick fix. Susan doesn't see that happening. She sees a long road ahead. Because Lola already has an effective means of getting around, Susan thinks it will be hard to motivate Lola to do what it takes to crawl and then walk.

She said the first thing we need to work on is Lola's neck and core strength, and she showed me a few exercises to do until all the paperwork has been filed and we get begin going in for bi-weekly physical therapy sessions, in about two weeks.

I am also trying to get signed up for Early Steps, the free, state-funded programs for children with developmental delays.

I left the office and headed home, and promptly sunk into despair. Even though I knew what the results of the evaluation would be. It felt as though I was trying to carry an extra hundred pounds on my shoulders, and I could barely get out of bed the rest of that day, and all of the next.

I hate the thought that my special, happy, sweet baby girl is going to have to work so much harder to do things that come easily to nearly everyone else. But we are going to do it, and we're going to get through this, together.

Lola and her big brother, Rio, and big sister, Lulu.

I started this, my second blog, to document our journey through physical therapy, however long that journey might be.