For support from parents with children with all ranges of hypotonia, please join the facebook group Hypotonia Parents Connection.

First steps.

Lola took her first steps June 27th, while we were in New Jersey.
Nearly a month later, and she's walking further and further distances.

She still needs to work on her core strength. I haven't seen her physical therapist since before we went to NJ, so I'm not sure if the walking changes anything in the frequency of our therapy visits, yet.

When we first got the hypotonia diagnosis, I thought walking would be in the far distant future. I didn't expect her to catch up so quickly!
This is not the case for many children with hypotonia. They put in many times the hours, the money, the frustration, the tears that I've gone through. Often, they have years and years of therapy, and more of it. Speech, occupational therapy, as well as physical therapy. Medical test after medical test.

Our journey to first steps was not a long road, but for many others it is.

Great news!

So, I guess Lola's hypotonia is much more mild than we originally thought. I can't believe all the progress she's made since we started therapy.

She's very proud of herself!

When she was first evaluated, if I lay her on the floor, she would just lay there and not even attempt to get up. Now she's standing up without pulling up on anything!

She still definitely has some issues, we're still working on core strength and arm strength and crawling with her palms flat on the ground instead of just on the base of her fingers.

But we got some great news at her last physical therapy session... Lola's ankles have strengthened up enough on her own that she doesn't need the braces anymore (or at least, she doesn't need them so badly that we need to pay $800 out-of-pocket for them.)!

I'm sure she'll be walking any day now.

Insurance Hell

My husband's company has been sold, and we're in insurance limbo. Tomorrow, we are no longer insured with Cigna, but we're not in the system of United Healthcare, yet.
And now, we wait. We haven't ordered Lola's ankle braces yet, because even if we have to pay out of pocket, which we are prepared to do, we want all that cash to count toward our deductible.

But my sweet little girl is making so much progress!

 

Who knew she could come so far in such a short amount of time?

Bad news.

Our Insurance will not cover the SMOs as we have not met our deductible yet this year, so we will have to pay out of pocket. And my husband's company has been bought out, which means his insurance may be changing in the next few weeks, so we will probably have to pay out of pocket for the next pair when she outgrows this one.

*Sigh.*

The Hip Helpers Are Here! The Hip Helpers Are Here!

Wearing her new hot pink Hip Helpers at the park.

Yesterday, the Hip Helpers I ordered came in the mail. (Super fast shipping!)
The Hip Helpers prevent Lola from scooting on her butt, because she can't sit with her legs out "Indian style" (or whatever the PC term is for that now. We called it "Indian style" when I was a kid.), so she is forced to crawl. She was crawling a few paces on her own before we got the Hip Helpers, but now she must crawl all over, and she has been getting a little bit frustrated at times. The Hip Helpers do not prevent her from pulling up to stand, but now she has to do it in a different way than she normally did it, which is also frustrating to her.

Lola crawling at the park.

In other news, she got fitted for her Sure Step SMOs on Thursday. Now we're playing the waiting game, waiting to hear if our insurance will cover them, and then waiting for them to be made. I am anxious to get them on her little feet. 

New developments...

Doing laps, cruising around her playpen.

On Saturday evening, Lola scooted over to the play pen that I'd recently dug out of the attic, indicated that she wanted to climb in by pulling up to stand and lifting her leg as if she would climb in if she could. So I lifted her up and put her in. A few minutes later, I realized she was doing laps, "cruising" around the edges of the playpen.  How exciting!

The only problem is her feet and so hyper-mobile that her feet are often sticking straight out to the sides instead of facing forward like normal feet. So now I have a prima ballerina/yogi for a daughter.

Like a ballerina in second position. 

So, next on our horizon is a visit with an orthopedist to get her fitted for ankle orthoses, and possibly one that goes above the ankle and converts to an ankle orthodic, like this one.

In the meantime, I ordered some hip helpers, which keep hypotonic kids from splaying their legs wide open, and they prevent Lola from scooting on her butt. She got to try on a pair at her physical therapy session yesterday, and she was crawling all over the place! 

At Physical Therapy. Standing up and sitting down practice (and play!)

Lola is making so much progress! Two weeks ago, she pulled herself up to standing for the first time. Last week, she pulled herself up to standing a second time. On Monday, she pulled herself up over and over and over again, all day. We had our second visit with the physical therapist, and she did great, there, too.
This afternoon while playing in our inflatable kiddie pool, she stood without holding onto anything at all for a second or two (I didn't even get to witness it. I was inside folding laundry while my husband was playing with the kids outside.)
We are still working on getting her to stand with a "soft" knee. That is, without locking her knees to hold herself up.
She loves the praise and clapping she receives when she tries something new, and really hams it up! If she does something she's proud of, and everyone present doesn't burst out in applause, she will stare at the offender until they clap.
Now she spends as much time as possible practicing her new skill of standing.
Her legs are so much stronger now. For the entire first year of her life, I never had trouble putting her down on the floor. Now, if she doesn't want me to put her down, she fights back!

Physical Therapy, Session 1

We had our first physical therapy session on Monday. Lola is still very wary of the physical therapist, as any 13 month old would be. Any time Susan tried to hold Lola, Lola would cry. But, as soon as she was in my arms again, Lola was fine.

We learned two new exercises. One is a rowing motion where we hold Lola's arms, and move her in like she's rowing a boat, all while singing, "Row, Row, Row Your Boat." It's kind of like a baby sit-up, but I'm doing most of the work for now.
The second exercise is rolling her over, again and again. For now, I am still doing almost all of the work, but eventually, she will (hopefully!) start doing it all on her own.

Since our appointment, I have been having difficulty getting her to do the exercises. When we row, her head falls backward and I feel like I'm going to kink her airway! And she gets pretty upset when I try to roll her. But, on a positive note, she's been rolling over more on her own, completely voluntarily!

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.

News!

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... 

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.

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.