Inching Along

Dad_and_Sol
First winter in Nashville

Today marks the beginning of our fifth month in Nashville. Four months down and we are finally getting into the swing of things with our therapy schedule. We have 6 weekly therapy appointments: 3 physical therapy (with two different therapists), 1 occupational therapy, 1 feeding therapy, and 1 developmental therapy. We are also being followed by a vision therapist and developmental optometrist every 3 months. Needless to say, combining therapy with our regular doctor and specialist appointments, we are on a strict schedule and are very tired at night!

That being said, every second we spend with therapists, doctors, and on the road to appointments is worth it. We’ve seen lots of tiny developments in all areas that are beginning to add up into bigger gains.

Pudding
Pudding is so yummy!

Quite literally, Solly is gaining weight! I wrote quite a bit last year about his stressful weight plateau and how we weren’t given any answers or solutions. Apparently, a weekly session with a feeding therapist is all we needed. Now, feeding is no piece of cake – I suspect Sol has some sensory issues that are contributing to this – however, he is consistently eating three small meals a day and drinking three bottles. He’s even trying a bit of table food, with french fries, chocolate pudding, and pancakes now his favorite foods. It might not sound like much, but this is a huge victory for us. More importantly, Sol has put on at least 4 pounds since we’ve lived down South, moving up in size from 9 month clothing to 18 month.

Another major gain has been learning to use his right arm. Many of our goals in OT include a stronger and engaged right side, so this has been much of our focus in our weekly sessions. When we moved to Nashville, Sol wasn’t sure how to engage his right arm or hand at all, so it typically hung at his side at all times. Now, he’s not only raising his right arm to give a fisted high five, but he’s also raising it to bat at toys. Take a look:

We hope to start some version of CIMT (Constraint-Induced Movement Therapy) this year to continue to increase the use of his right arm and hand.

When it comes to gross motor skills, Sol has made the most gains. Our therapists have added some new tools to our toolbox, which have made quite the different in his tone, strength, and skills.

Grocery_cart
Sitting up tall

For sitting, we purchased a GoTo Seat, which supports Sol enough to sit independently. While it does not make his trunk stronger (which is what we really need!), it gives him a feeling of confidence and independence to sit and play with toys alone. This paired with trunk strengthening activities in PT have made him much stronger. He’s now sitting independently using an arm to prop himself up and can now sit in a grocery cart all by himself, which he loves!

Stander
Stander time

We’re also starting to use a stander. A stander is exactly what it sounds like: it helps kiddos stand. Independent standing helps with developing hip joints, bone density and leg strength, but for kids with CP who are delayed in this milestone, like Solly, there is a risk of hip dysplasia and other impairments. Luckily, a stander will help Sol develop strength, density, and proper alignment, and it will also help decrease muscle tone. While we’ve ordered our own, we are still waiting for insurance to approve its necessity. Fortunately, United Cerebral Palsy of Middle Tennessee has a neat program called the Equipment Exchange that loans out used equipment, and we were able to borrow a stander from them. Sol now spends about 40 minutes a day playing in it.

Gait_trainer
Moving right along

Most 15 month old children are up and walking on their own. While we are working on each milestone in chronological order, we also try and expose Sol to things typical 15 month olds are doing. Since he isn’t strong enough to walk on his own yet, we’ve begun teaching him how to walk using a gait trainer. It is similar to a walker, but it also includes lots of ways to support his weak trunk. At least once a week, we get Sol into a gait trainer and go through the motions of getting his legs through a reciprocal movement. He doesn’t quite have the hang of it yet, but he will try to move one leg forward a couple of times each session.

Finally, and most exciting, is seeing all of Sol’s hard work come to fruition. Last weekend, we watched as he figured out how to put one arm in front of the other and pull his body forward completely independently. There is no better feeling than watching him learn a new skill and then run with it! Here is Solly’s version of an army crawl:

 

 

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3 thoughts on “Inching Along

  1. I just caught up on your posts, Cami. Thank you for being so open and sharing your journey. You are so inspiring to all of us moms! I love how happy Sol seems in all of the photos and videos, and seeing him progress. This move to Nashville seems like a great miracle in so many ways. Much love and hugs to all three of you.

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  2. Camie and Mike: WOW! Thank you for the update on Solly. The 2nd video had me in tears of joy. His progress is fantastic. As are his parents.

    Like

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