Physical Therapy Update

When we went to Isaiah's first OI clinic a few weeks ago, we met with a physical therapist (PT) at DuPont.  Isaiah has a PT that he sees weekly (actually twice a week because he also sees her for water therapy!), and that we adore; she was thrilled to hear that we were meeting with a PT with lots of OI experience.

Meeting with a PT who frequently sees other children with OI gave us the opportunity to get lots of ideas for what PT should look like...and a lot of that was already implemented...rolling over, tummy time, reaching passed midline....I could on, but she also gave us the go ahead to try some things that I have been hesitant to try at home with Isaiah's regular PT. (Basically, stop being such a chicken, momma.)

One suggestion she had for Isaiah was that he needs to try "short sitting"....coming up with something for Isaiah to sit on took some creativity but once we figured it out, it was amazing!  He's rocking putting some weight on his legs 

"Hello? Dr K? It's time to take this splint off now."
(This photo is from a few weeks ago, when he had a broken arm)

We're even working on getting him short sitting in his wheelchair like he should be. 

This picture was shot in the middle of changing things up. ;-)

 Originally he was short sitting in his chair, but then he couldn't reach the wheels because he was sitting too far forward.  I put off finding a solution until we talked rods with his orthopedic surgeon (rods will likely lengthen his legs, so I didn't want to change his cushion if it was only for a short period of time, especially since he's been successful propelling his chair sitting the way he's been).  I chatted with some fellow OI moms (once I knew surgery is being put off) and some suggested cutting his cushion....I couldn't do it though; that little sucker costs hundreds of dollars!  Instead, I found some thick foam at a local craft store and cut that to size.  Bonus is that it was a remnant; I got it for $5. I've got enough for a foot rest and an extra seat cushion!


Beyond short sitting, we're also trying to give Isaiah ample opportunity to scoot on his behind.  Now that he is rocking independent sitting, we're hopeful he'll start trying to get moving.  We want to give him a good, stable place to work on moving, and one suggestion we love is to give him baths in a laundry basket.

Yup, a laundry basket!  The holes give and sides give him lots of areas to grab onto to support himself and pull. He was still getting baths in a baby tub, we're going to give him a few days outside the tub in the basket (to get used to being in it) and then we'll be moving on to baths in this basket, hoping that the water will give him the ability to move (hello at home water therapy).  I'm nervous that I'm going to have one slippery little boy, but he really can and should be sitting up in the tub to strengthen his muscles.  Isaiah hasn't been challenged at bath time, it's time to change that. :)


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Sorry for the lack of Wednesday posting, we had two appointments that day that took over my brain. ;-) More on that next week. :)

Our First OI Clinic Appointment

Oh hey, there's a ton of information in this post.  Although I do talk a lot, my posts are usually less wordy, so excuse this one :-P
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We're at AI DuPont Hospital for Children pretty frequently, but as Isaiah gets older, the amount of time we're there continues to get less and less.  Pam treatments were supposed to be every 8 weeks until he turned two, now we're stretching them out to every 9-10 weeks and by the time Isaiah is three, I believe it'll be every 12 weeks (woo hoo! No offense Dupont family, we love you!)

Something else has changed since Isaiah is two, he's now ready to go to OI Clinic.  OI Clinic involves seeing his geneticist, orthopedic surgeon, and a physical therapist with OI experience, all at once!

Since we live a few hours away from the hospital, the doctors and schedulers did me a huge favor and squeezed us into the schedule when we were there for his latest Pam treatment.  It made for an exhausting day (especially because we also did a sleep study the night before, yup.), but was worth it.

We were grateful to have clinic the same day as pam for more reasons than just convenience.  The PT we'd be meeting with had a chance to stop in while Isaiah was relaxed and getting treatment.  When she arrived, he was rolling around playing on his bed in Day Medicine so she was able to see him comfortable...(he wouldn't be comfy later at the clinic appointment, because it all looks like a doctor's office, and spoiler alert, he actually fell asleep while we were in clinic, which really would have wrecked her chances of seeing him moving).  Her meeting us in Day Medicine gave us the chance to really talk about Isaiah from a PT perspective, what we're doing with him and what she'd like to see him do.

After Pam was done that day, we headed right to the sign in area for clinic.  From there, we made our way to X-Ray, where Isaiah had his spine and legs x-rayed.  They also included his right arm to check for the fracture we suspected (this was mid-September).

Once we were finished with X-Ray, we were brought to a room to wait for everyone to arrive.  They had been meeting with other families and then checking out Isaiah's X-rays together.  We were expecting to talk about rods with the doctors, so we knew that was a big conversation they were having over the xrays.

What are rods?
Rods are something many with OI get placed in their limbs if they are fracturing a lot (they basically act as internal splints) and to help straighten the bowing in the limbs if that's there.  There are different types of rods.  Isaiah's orthopedic surgeon works with what we hope he can get- FD Rods aka Fassier Duval Telescopong Rods.  Telescoping means they grow with the person, which means less replacing, less surgeries, as compared to other types of rods.  The rods are surgically placed inside the bones....and honestly, I don't want to go too much more beyond that right now, because it scares me.

Rods mean a lot to us.  I believe Isaiah feels unstable.  I believe he feels the fragility of his bones and that's why he isn't more active.  I am hopeful that rods inside of his bones will give him the courage to move.  But....according to Isaiah's ortho, it's not quite time yet.  He'd like to see more to Isaiah's bones.  He doesn't feel his bones are right for FD rods yet, but believes they will with a bit more time.  In the meantime, we're listening to the PT we met with who offered us a laundry list of things to work on with Isaiah and his therapy team at home.  She wants him bearing weight on his limbs and although it makes us extremely nervous, we're working on it.  More details on that in the future. ;-)

Isaiah's geneticist is thrilled with the progress of Isaiah's skeleton.  Isaiah's bones look brighter/whiter than they've ever looked before.  He has no scoliosis and that makes my heart sing.  Remember how he had a moderate kyphosis and we were put on limitations on what to do with Isaiah?  Well guess what?  That's practically gone!  He has one vertebrae affected by the kyphosis, as compared to the four that were affected last year, so that's fantastic news.  That means the pamidronate is doing it's job and Isaiah's bones are getting stronger.  OI type III is deforming; there's no way around that.  It will be a constant battle to keep his spine as straight as possible.  His spine is very important, because if it curves too much, it can very much affect everything in his torso.  His lungs are already restricted by the space available, curving of the spine would restrict that space more.

Speaking of his lungs....we've also recently found out the results of Isaiah's latest torture sleep study!  Details on that later.

Gosh, if you actually read all of this, you deserve a cookie.  :-P

Brrrraaaaaaiiiiiiiinnnnnns

Lately, Isaiah's sleep schedule has been OFF.  Before surgery, we'd put him to bed at 7pm and he'd be passed out by 7:10...it was beautiful.  We'd give him a bath, a bottle, read a story, brush his teeth, and lay him in his crib while he'd roll over onto his side snuggling in to the mattress and his mickey doll while we put the pulse ox and blankets on...

Seriously.  It was magical.

He wouldn't wake until at least 6:30 but most times stayed in bed until 7:30.  It was glorious.

Nowadays he is up until 9pm rolling around, talking, laughing, gagging himself until he pukes (which requires sheet/clothes changes), and waking up for the day at ungodly hours.

#normalbabyproblems.  

Yesterday morning Isaiah was up for the day at 4:30am.  Dave and I woke to the sound of his giggling, babbling, and yelling.  

It's beautiful.  It really truly is.  We're so blessed and happy and would love to frolic around and tell you more about that.

Except it was 4:30 in the morning, we're tired, and well, sleeeeeeeeeeeeeeeeeeeeeeeep.  

He lasted in his crib until 5:15 and then Carl started meow meow meow meow (which in cat language means, time to feed me, get up, feed me.  Feed me before you tend to the kid in the crib, or I'll really start bellowing.)

On non-therapy/appointment days (which are dwindling), I don't care.

Ok, I'm lying, I totally care and grumble on those days too.  But it really stinks when he wakes crazy early on therapy days because then he's Mr Grumble Pants and uncooperative.  I tried to get him to lay down at 9am, but he wasn't having it...so we relaxed on the deck, watched too much tv, and tried to stay awake without overworking him.

(On a serious note, I have a history of being a klutz.  Add in exhaustion and my baby with OI and that could spell disaster....so I really try not to be overly-exhausted.)

PT started out rough but he rallied and even got onto his left side for the first time since surgery!

And then just like that, he was done.  He rolled over and passed out asleep.  Halfway through PT. 

Maybe this will teach him that 4:30 is for the birds.