Wednesday, November 25, 2015

Thankful Heart

How is it that time of year again?  I swear, the older I get, the faster time goes.  This will be our third Thanksgiving with Isaiah!

We are still profoundly grateful for everything and everyone we mentioned in 2013...thanks to our family, friends, OI families, doctors, nurses, therapists....Isaiah is thriving.

I know he's small in size, but look at how big he is!  He's grown into such a little boy!  A curious, thoughtful, happy, sometimes stubborn, amazing little boy.

A boy who no longer needs tubes to eat or breathe, or cords attached to him to monitor his oxygen levels.  A boy who doesn't have to hang out reclined because of his spine...

A little boy...who is ready to gobble til he wobbles. (Yep, he totally wore this shirt last year....there's no shame in taking advantage of slow growth. ;)

Happy Thanksgiving! Thank you for following along with us, for supporting us, and for loving and believing in Isaiah. <3

Friday, November 20, 2015

Wheelchair Updates

Our journey with Isaiah's first wheelchair has been quite the learning experience.  Before we had Isaiah's chair, I'd talk to other parents of kids in wheelchairs or adults in chairs, my head would spin when we talked about camber, seat depth, etc etc.....but now that we're 4 months in, I'm feeling a little more least in terms of Isaiah's chair.

We've loved his chair, and even though it was custom-built for him (you won't usually find a 7" wide wheelchair), but there are some aspects that were just not working for him so as the months have gone by, I've been slowly tweaking things (thanks to the advice and help of many fellow OI parents), and seeing a big difference in how Isaiah sits and moves.

I'm a nerd and made a comparison photo below to explain for those interested in learning about Isaiah's chair and for those who may be looking for a wheelchair for their kiddo.  Please know, I don't know one person who finds their chair "perfect", tweaks always seem to be necessary, and they seem to come naturally.

1) The harness-  The original harness was a gigantic harness system that clipped over Isaiah in four different spots.  It was WAY too big for him.  It's since been replaced by the DME (the medical equipment company) with a smaller one, but I kind of hated all the clipping and unclipping of the buckles, so thanks to a local OI family, I was able to swap out the clipping harness system with a velcro one.  

SO much easier....a little too easy.  Isaiah learned to take it off.  I've since added a load more velcro which curbed the problem, but we've also agreed to allow Isaiah to keep the harness off in certain situations (in our house, at the hospital under my close supervision).  He is really good about the harness.  If we are out and about, he puts the harness over himself as soon as we get him in his chair and out of the car.  (Hello there, independence.)

2) Added pipe insulation over the wheels' push bars- I should have the bars taken off since Isaiah doesn't use them, but that involves taking the wheels somewhere and having them deflated so that we can unscrew every darn screw on there.  Who has time for that?  Isaiah had started putting his hands down in between the bars and the wheels and worrying me that he'd hurt himself or get one of the guys from the DME suggested putting the insulation on and we love it!  It's no added weight and actually makes it easier for Isaiah to try to grasp the push bars.  It also blocks his ability to put his little hands where they don't belong....they are easily removable and protect my walls. ;-)  

3) My favorite change- the cushion!- The cushion that Isaiah's chair came with is fabulous...very well made foam, comfy to sit on....but it was just too long.  His legs sat entirely on the seat with just his feet hanging off, and that really hindered his strength in pushing.  The seat was originally perfect on the day we got the chair, because the backrest was more forward than it is now...but then he couldn't reach the wheels to push himself and pushing himself was the whole point(!).  So we had to push the backrest back a few inches, taking away his ability to "short sit" (short sitting is how a person typically sits in a chair/stool...knees and hips at 90 degree angles, feet flat).  I let it stay that way for far too long (because cutting the seat freaked me out- that cushion is expensive! and I thought he'd be getting rods surgically placed in his legs sooner rather than later, which would lengthen his legs a small amount, so I didn't want to make changes to just change it again right away), until one day I went to our local craft store and picked up a piece of foam remnant for $5.  (Mind you, a few of my best OI mom gal pals talked me into and through this.)  I measured Isaiah from butt to knees while he was sitting and cut a piece of foam to fit.  I removed the original cushion from its cover and put the new piece of foam inside the case, placing it on Isaiah's chair....and he was sitting so much better!  Of course, his legs were just dangling until I added #4 (see below), but he was on his way to short sitting!  As a few weeks went by, I noticed he was sliding in his seat, which had me a bit nervous, so one of my OI mama friends sent me the cushion cover Isaiah is currently using- and it includes a pommel, which holds Isaiah in place.  Also, the fabric has skulls on it...which is the most important fact here, obviously. ;-)

4) The last big change I made to the chair was adding a place that Isaiah can rest his feet.  The footrest that came with the chair only comes so high, so when I made it so Isaiah could short sit, I also used a piece of foam to create a rest for his feet.  I've snazzed it up with fabric now and had to make it a little taller when we added the pommel cushion since that cushion is a little bigger, but it works really well under Isaiah's feet.  it gives him a proper place to rest them and bear weight on his legs while he propels himself in his chair.  Since we've added this cushion, Isaiah moves so much faster.    

I'm sure we'll continue to change Isaiah chair to meet his needs as time goes on (we also added a bike cup holder on the back using a zip tie to hold Isaiah's cup of some point we hope to find a way to add it to the front. :)

Wednesday, November 18, 2015

Bye Bye Bottle

The time has come.  Isaiah is two years old (27 months to be exact).  This is so very bitter-sweet but it's time to cut the bottle.

If you've just started following Isaiah, you may not know this, but in the beginning he was tube-fed.  He ate through an NG-tube (a tube that went through his nose down to his belly....and yes, we learned to place that tube ourselves...but I usually made Dave do it) until he was 4.5 months old...and teaching him to suck a bottle was not easy...but that day he finally took an entire bottle?  Amazing.

As amazing as it was....and is....he's now two and it's time to move to the next step...(because Dr Browns bottles are great and all, but they sure come with a lot of, I'm worried that sucking the bottle is affecting his speech/teeth, so let's nip that in the bud).  The transition started some time ago, we cut bottles to only be before he went to sleep....but some nights he'd get a bonus bottle ever since he last broke his arm...

But, he's been healed for some time and it's time to just go cold turkey.  This weekend, we took Isaiah out to our local Babies R Us and had him pick a cup to drink his milk out of (instead of the bottle).

He spent a lot of time looking at all of his choices, but settled on a set of Mickey sippy cups ("Mickey! Mickey!") that were on sale (he has an eye for a sale tag; good job Isaiah!).  The sippy cups have hard tops, which made us question the decision, but we bought them anyway, since he selected them.

We talked all about being a big boy...and when we got home, we officially chucked the bottles. (Well, I may have hung on to them in case he gets dehydrated in this transition process, but he doesn't know that.)

A video posted by Vicky (@oibelieveinisaiah) on
Writing this post reminded me of how frustrated we were trying to get him to drink from the some days it felt like he'd never take to it...but he did, eventually.  And he will this time too. :)

Monday, November 16, 2015

Pam Time and MRI

The older Isaiah gets, the tougher it is to get a moment to sit down and post to the blog! Sorry to those that only follow the blog, we're doing fine, but last week was a BUSY one!

Isaiah and I made a trip to Delaware for Pam (pamidronate- the medicine he gets to help his bones).

Honestly, it all went great!  He was such a big boy and handled having his port accessed (basically got an IV going but instead of in a vein, they use the port he had placed when he was 6 months old) like a champ...his medicine was flowing before we knew it and he was rolling around Day Medicine like he owned the joint.

"Can you show me where the door is?"

Pamidronate is done a few hours each day over 3 days for kids Isaiah's age at DuPont. (That varies by doctor and protocol).  We normally stay at the Ronald McDonald House across from the hospital but since they are renovating right now, instead they helped us get into a local hotel about ten minutes away!  It was super convenient for us and the same rate as staying at the McDonald House.  They even had an amazingly generous welcome pack for us at check in at the hotel.  We were still able to have meals at the house if we wanted to and play in the playrooms...we had dinner and playtime both Monday and Tuesday night.

Here's a little collage of Isaiah at dinner, playing pretend in the Pirate Room of RMH,
and opening his Welcome box at the hotel.  He loves his new teddy bear named Steamer.

I think the only tough part was that the hotel didn't have any cribs available, only play pens...and King Isaiah does not sleep in a play pen...apparently....he had very rough sleeps when I tried to have him sleep in the play pen so instead he joined me in my bed.

Basically taking it over.  HOW does such a tiny little boy take up a whole queen size bed?  Like that. (Picture above.)

Day 2 is usually our easiest day (since he's already accessed and doesn't need to be deaccessed), but it proved to be a rougher day than normal...we had a late start due to some technical issues with the pump and I had a mini heart attack at the end of his infusion but it all worked out.

To make up for a later exit than expected, we grabbed Isaiah's very first Happy Meal through drive-thru...

He loved it.

Our third and last day in Delaware started EARLY (6:45. at the hospital for breakfast.), we had an early morning MRI to check on Isaiah's shunt and hydrocephalus.

This was Isaiah's third MRI.  His first he had sedated, and it helped diagnosis his hydrocephalus.  His second was an unsedated fast MRI; I actually went in the tube with him. He handled it better than I did! This third one was similar to the his last MRI, unsedated and and fast....but he's older now, more observant...more nervous.  this time he cried and jumped whenever the MRI made noise and I ended up having to hold his chin so he didn't move his head all around...this time it felt a bit like torture....putting Isaiah through these things is so tough sometimes....I know it's our normal, but it doesn't make it easy.

Anyways, after his MRI we started Isaiah's last day of pamidronate.  We were (luckily) able to schedule a follow up with Isaiah's neurosurgeon only an hour and a half after the MRI (in the morning during pamidronate)...normally you can't leave Day Medicine when the medicine is flowing, but a nurse from the MRI area was able to help us and tag along upstairs.

What'll happen if I "push da button"?

We met with the doctor who showed us the latest pictures...I made this little collage to compare...the first is not exactly the same view as the other two but it shows you all of the spinal fluid in Isaiah's head at the time (all the bright white).

We're pretty happy with the results.  His ventricles are smaller but not too small (you don't want them to shrink rapidly from what I understand) and they are more symmetrical than they were before.  Progress.  Isaiah's doctor seemed happy with the results and this time we don't need to see him for another year (whoop whoop! no offense Dr C).

After our follow up, we made our way back to Day Medicine and finished up with Pamidronate, Isaiah was de accessed and we hit the road!

Thanks to being there early, we actually finished the earliest we ever have...and were home by 1:30!!!  We had a nice lunch and Isaiah was actually able to nap in his own crib!  Home sweet home, for sure.

The rest of the week was full of a visit from another OI family from out of state...and it was awesome!  Updates on that soon. :)

Friday, November 6, 2015

Dear Awesome Mom

Dear Awesome Mom (that we bumped into twice this past weekend),

We met you on your son's birthday, seeing you outside of Build a Bear at the mall while we were trick or treating and you were having a special birthday night with your birthday boy who happened to love Mike Wazowski (who Isaiah just so happened to be dressed up as) so you stopped to say hi.

Clearly I had to repost a picture of Isaiah in his Halloween costume. 

You and your son didn't talk about Isaiah.  You both talked to him.  You told him how cool his costume was.  How much your son loved Mike Wazowski.  Your son mentioned how he liked Isaiah's wheels.  You got down on your son and Isaiah's level.  

We had many positive interactions during Trick or Treat, but yours stuck with us.

And then...there you were at the Disney Store, two days later, when we were getting ideas to send to Santa for Christmas.

You, your son, and husband stopped to chat with us again, remembering us from the mall.  You again got down on the boys' level.  Your son pointed out Isaiah's wheelchair....but you didn't tell him not to "say that".  You didn't tell him not to look.  You asked if it was ok if he touched the wheel he wanted to touch (yes, I said, we just don't want to move it if Isaiah doesn't want to move right now). You acknowledged your son's curiosity and did so without flinching...."Yes, you know how you use your legs to walk and run?  He uses his wheels to walk and run."  You also mentioned you know another child who uses a wheelchair to move. Our guys had a short conversation...until they got distracted by...everything.  They're toddlers and we were in the Disney Store afterall

I just want to say thank you.  Thank you for acknowledging that yes, Isaiah moves differently, but he's a normal little guy just like your son.  Thank you for accepting different and teaching your son to do the same.

Thank you for putting up with my crazy teary eyed "I could hug you". Twice. ha.

And if we bump into you again, we have to face it that our friendship is meant to be and I will ask for your cell so our kids can have play dates...because I wish I had done that but felt like a weirdo for even thinking it, ha).

Mike Wazowski Isaiah's grateful momma

Monday, November 2, 2015

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 every so often Isaiah's PT reminds me of how important it is to get Isaiah completely on his 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.