Meeting Santa

Earlier this week, we took our annual trip to the mall to visit Santa.  Before we hit the mall, Isaiah and I had spent a lot of time doing a lot of talking, prepping for our visit, about Santa and sitting on his lap.  I'd show him last year's picture of him losing his mind sitting on Santa's lap and we'd talk about how he's a big boy now and he can sit in Santa's lap, talk with him, and know we're right there if he needs us.

We were shocked to see no one in line to visit Santa so we made our way right up to him.  I'll be honest, I was expecting a lot of tears and yelling....but Isaiah is a big boy...

And he visited Santa like one!  He got upset at first when I stepped away and some of the bloopers show him with a scowl on his face and pointing (at me), but once I started acting like a goof he was good to go!

He's made so much progress...

His first visit at just 4 months old included his mattress pad and plenty of tubes, wires, machine, etc.  His second visit at 1 year he was free of all of that, but was dealing with undiagnosed hydrocephalus and he wasn't strong enough to sit up.  But this year he was able to sit with Santa like typical kids do!  He didn't say too much to Santa this year but we're pretty sure next year he'll be chatting up a storm with him.

Thank you Santa for continuing to make our Christmases amazing. :)

It's Beginning to Look a Lot Like Christmas

We've been busy decking the halls at our house....and this year, Isaiah is SO very into it all!

He helped us decorate the Christmas tree (we are so grateful for his wheelchair, allowing him to help independently) and ever since then he points to it daily "Kissma Tree, Kissma Tree".  

He's learned how to say "Merry Christmas!", though it sounds something like "Mera Kissma!" and has learned quite a few Christmas Carols...his favorites being Jingle Bells, Deck the Halls, Joy to the World, and Up on the Rooftop.

We've taken him to a few events, including Dinner with Mrs Claus and Yummie over at Kitchen Kettle Village for a second year in a row. 

We took advantage of the nicer weather and our membership and checked out the amazing displays at Longwood Gardens...

(We had gotten there right at sundown.  Holy beautiful sunset Batman.)

and we met Santa at our local library at a special closed event!

Isaiah tested his coal-limits that night by yanking at Santa's beard and pulling his glasses and tossing them on the floor.  #thatkid  We've since had many talks about that and I can tell you that when we visited Santa at the mall, Isaiah's behavior was much better....(picture to come!)

Toddler behavior aside, it's been a pretty fantastic holiday season so far.  Only 9 days left until Christmas!

Thanksgiving Recap- 2.5 weeks later

Hi there! Man, the older Isaiah gets, the tougher it is for me to find time to blog! It used to be so easy when Isaiah was on a routine...nowadays our routines include Isaiah fighting our routines....and all food... except bagels, chicken nuggets, fish sticks, and peanut butter sandwiches.  #welcometotoddlerhood

Seriously guys, I'm in survival mode.  I am hoping Isaiah decides he likes routine again soon because I miss it so. very. much.

I was just going to skip sharing this post since it's so late...but better late than never, huh?

__________

Our Thanksgiving was wonderful for the most part, spent with family about a half hour away from us.  Just enough time in the car to fall asleep...

Which worked out perfectly for a short nap time for him.

Isaiah loved playing with two of his cousins...(seriously, these two boys are the gentlest, kindest, sweetest, most inclusive kids ever....and I don't say that because I know their Nan Ann reads the blog. ;-) (Hi Aunt Ann!)

When it came to dinner time...Isaiah was offered the traditional Thanksgiving feast...but opted for a peanut butter sandwich.  Who is actually surprised?  There are days I'll fight with him about food, a holiday is not one of them....but he did eat some leftover turkey when we got home. :)

After he was done scarfing down his sandwich eating his meal, we pulled out small toys and books for him to enjoy while we finished our meals and then it was time for dessert! Hello there Isaiah cookie...

We've been working on spelling Isaiah's name with him. :) I wish I had hit video instead of snapping a picture at that moment above...so fun hearing him say "I-A-H"...still working on clearly articulating the beginning "I-S-A".

We did have a question if Isaiah had a compression fracture in his spine...when we had put him in his high chair in the morning for breakfast, 10 seconds later he moved a certain way and then everything about him changed and he began crying his break cry, shaking, and turning pretty purple (from the pain/reaction, not a lack of oxygen).  I immediately pulled him from his high chair and held him reclined in my lap for breakfast.  If I sat him up at all, he'd breathe differently, more labored and faster, so we contemplated canceling going to Thanksgiving....instead though, we gave him some medicine and gave him time to rest....and he handled the day like a champion.  He even sat in his travel high chair- no labored breathing or arching his back...He didn't show one sign of being in pain until it was time for his next dose and we were just very careful with him for a few days.  We're still not sure if he had fractured (because if we took him in for every suspected fracture we'd always be at the hospital and he'd be shining green from all that radiation :-P ) but we're glad we followed his lead and didn't cancel our time with family.  It's so important for us to show him that OI won't stop him from living his life.  We might have to pause or do things a little differently here or there, but it won't hold him down. <3

We hope you had a wonderful Thanksgiving and are enjoying this beautiful time of year. We've been busy decorating, baking, and enjoying many holiday activities....can't wait to show you! :)

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

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 confident...at 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 stuck...so 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 water...at some point we hope to find a way to add it to the front. :)

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 parts...plus, 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 Nov 14, 2015 at 2:17pm PST

Writing this post reminded me of how frustrated we were trying to get him to drink from the bottle...how some days it felt like he'd never take to it...but he did, eventually.  And he will this time too. :)

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. :)