STANDING for the First Time

You read that right, my friend, for the first time in Isaiah's two and a half years of life, he got a glimpse of what it feels like to be upright with his feet on the "ground" (in quotes because we had to make a little adjustment there).  Isaiah's PT brought a gait trainer to our house to try!  Are you wondering what the heck a gait trainer is?  Well, it's a device on wheels which helps a person who is unable to walk independently to learn (someday, kids!).  It's slightly comparable to a baby walker but has a lot more supports available.

Initially, he was hesitant....but that seriously lasted no more than 10 seconds.  

In the words of Isaiah, Ta Daaaaaaaa!!! 

Look at those toes touching the ground...well...the top of our ottoman.  Even the smallest gait trainer made by this company (the Rifton mini pacer) is too big for Isaiah, but only by a few inches and in all honestly, we're not intending to use it to teach Isaiah to walk just yet...the purpose of this for Isaiah is to give him a safe supportive piece of equipment to get the idea of standing in and to do some weight bearing to strengthen the muscles in his legs (there's actually a sling that he sits on which takes some of his weight). The ottoman topper works to perfectly help his feet touch the "ground" and is actually perfect because it has a bit of give so he's not pushing on a very hard surface (like our hardwood floors).

He seriously warmed up to this new position and device so quickly...

And after a half hour in it, I went to take him out, only to get this reaction from him...

"Not yet, mama!" His first time in a gait trainer and he spent an entire HOUR in there.  It is very easy to get him in and out of it myself (and that's a mega perk in my book) and when the time comes that he wants to take steps, that ottoman topper is perfectly inside so he'd be able to walk backwards and forwards.

We have this on hand for the next week for Isaiah to continue to check out and we'll be doing some research/finding a DME (a company that can provide this) to order one for Isaiah sometime in the future.

It was so insanely amazing to see him like this today.  To see him enthusiastic, with his feet flat, goodness, he has come a looooong way.

PT Fun

Isaiah has come a long way in terms of his physical therapy.  Lately our focus has been on two things: head/torso control and reaching.

Isaiah can be a stubborn boy sometimes...not sure where he gets that from.... :-P but he's especially stubborn with tummy time.  We had a system of working on it on an incline on the floor but he refuses to lift or hold his head up...

But he will keep his head up when on me or on an exercise ball so that's what we've been focusing on.  We spent every day for about 3 weeks (then the holidays happened and we took an unintentional break.  whoopsie.  Back to it today!) spending some time on the ball, and quickly learned that he will work for Disney Junior. 

We've heard every song from his new obsession, The Lion Guard, more times than I care for, but if it keeps him inspired to hold himself up, bear weight on his arms, and enjoy it...well, I'll listen to it 500 times a day if I have to.  

Isaiah's PT has also given us a great tip to pause the video when he needs to rest, as that pause pushes him to keep himself going (because he wants to watch and sing along).

Isaiah is tolerating 5 minutes of tummy time without a break, holding his head up the entire time, and that's a huge win for us.  He's even rolling over onto his belly more when not working on tummy time, choosing it because it's comfy, but we just need to figure out how to get him to get the confidence to put his head up when not on the ball or on us and he'll be golden!

The other skill we're having fun mastering is reaching...reaching to the point of getting him to lift a cheek off the ground.

We're hoping this will strengthen his core and get him on the way to "scooting" around independently.

He is so insanely inspire by everything Lion Guard....so do me a favor and don't tell him this toy is from Lion King haha.

We just had a two week break from all things therapy thanks to the holidays....although we enjoyed the break, it'll be nice to get back into the swing of things with Isaiah's physical therapist, occupational therapist, and speech therapist this week.  We're excited for more ideas to continue to implement into our daily routines. :)

Tummy Time at Age 2?

Yep.  Tummy time at age 2.  Tummy time is something that we've been working on for forever...but it's so important (even if it scares me) since Isaiah isn't mobile.  Putting him onto his tummy helps to make sure he is working those important neck, back, and belly muscles.

But then Isaiah will fracture an arm and I won't push it at all....especially because once he's healed, he rolls onto his belly just fine for the most part, he just can't pull his arm out from under him.

But that side rolling doesn't work his neck....so every so often Isaiah's PT reminds me of how important it is to get Isaiah completely on his tummy...so she challenged me to get him on his belly every day, even if it's just for five minutes.

So I'm trying to make it a part of our routines....thankfully, Carl is helping. ;-) Side note: Carl loves when Isaiah does tummy time. He always comes out from where ever he is and joins Isaiah on his incline....I think it's partly because he's on a comfy blanket and partly because he wants to show off how good he is at tummy time.  He wants to be a good example for Isaiah, you know? #crazycatlady

I've learned that Isaiah is very motivated by his I-Pad (is anyone actually surprised by this?), so that's what he gets to play with now when on his tummy...and look how very motivating it is!

Some days Isaiah needs more help than others lifting his noggin, but he's getting there.  He always gets nervous when I go to put him down for tummy time but quickly recovers once he's on his mat...

This picture melts my heart.

Isaiah's due for his pamidronate soon (already?) and he tends to hit some kind of milestone or do something exciting after he's gotten that awesome bone juice....I'm hoping that we'll see Isaiah having a much easier time with tummy time after this Pam. :)  Until then, we'll continue to do our best with daily tummy time.

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.