Monday, August 22, 2016

Pam + OI Clinic

Right before Isaiah officially turned 3 years old, we had a quick trip to duPont/Nemours for Isaiah's pamidronate treatment.

We made our way to the Ronald McDonald House on Sunday, since we were expecting to be at the hospital bright and early for treatment.  We actually spent a lot of time enjoying what the McDonald House has to offer this go round....usually we stick to our room, dinner, and the play rooms.  This time we checked out the library, did a craft one night, visited with some therapy dogs, celebrated Isaiah's birthday after the monthly meeting....we made lots of fun memories this trip!


Isaiah decided to torture us party all night Monday night (from about midnight to 4am)....and yet was still in ok humor for his first day of pam treatment....it was a long morning (especially for Dave and I) but was made so much fun by getting to hang with our pal Gavin, his family, and our new friend Maddie and her parents.  She was so sweet with Isaiah! After pam was done for the first day, we headed to OI Clinic for x-rays and discussions with Isaiah's geneticist, his orthopedic surgeon, the PT we've worked with since Isaiah left the NICU, and more. 


Isaiah fell asleep in my arms for some of the discussions, but ended up waking and showing off how he can scoot when laying on his back and how he can sit up on his own.  His x-rays also did some showing off for him....his bones look beautiful.  They are looking better than ever before.  Guys, his body is looking ready for rods!!!! Last year, his bones just weren't ready; if rods would have been surgically placed in his bones, they would have likely migrated right out, which would have meant more surgeries.  But now, his bones are longer, stronger, and should be able to hold those rods...and he is showing interest in getting moving, which is something he wasn't showing last year.  

We're expecting to schedule his first rodding surgery (his orthopedic surgeon does 2 bones at once, so it'll be a few surgeries over the years) for the spring, unless Isaiah fractures badly before then.  If he does, it'll be done asap.  Those little leggies will be straight before we know it!  Until then, we're going to continue to push Isaiah to develop muscles in his legs by having him weight-bearing in his new gait trainer (that finally came!) and continue to give him incentives to get sliding and scooting on the floor.  His arms have really developed some beautiful muscle thanks to pushing himself in his chairs, so if we can help develop his leg muscles?  

The rest of our trip went very smoothly and quickly....Isaiah had an adorable therapy dog and his owner come and visit us during day 2 of pam and Isaiah just loved petting him.

I spy Gavin! :)

He thankfully napped and slept well Tuesday into Wednesday which helped all three of us really enjoy the rest of the trip...

Sitting next to the August birthday cake! Isaiah was the only birthday kid there for the month of August....and he sure enjoyed that cake!

Working on a craft after dinner on Tuesday at RMH


And now we are switched to the 12 week dosage schedule since Isaiah is officially 3!  This trip was so positive and full of good news!  Hopefully they can all be this good. :)

Monday, August 15, 2016

Isaiah turned 3!

This past Thursday, Isaiah turned THREE YEARS OLD! He sure has come a long way in his three years.


Last weekend, we celebrated his 3rd birthday with some of his aunts, uncles, and his grandparents.



Thanks to Icing Smiles, he had the most amazing cake ever!  To go along with the pirate theme that you may have noticed in his new big boy room (which I wanted to mention- I did add the links to everything I could think of on there), the cake that his baker friend, Rachel, made also had a pirate theme...


It was so creative, yummy, and huge! I wish I had my phone ready to take video when Rachel brought it in.  His little jaw dropped and his eyes were so huge. 


We were really grateful for the awesome cake!  Honestly, I have been having some feelings (I blame the hormones) of guilt that I couldn't throw Isaiah the big party we have thrown the past few years...but being so far toward the end of my pregnancy, and it being such a hot time of year, it would be been too much...especially since we had to leave for Delaware for his next pam treatment the next day.  So I was extra grateful to Rachel and Icing Smiles for making his birthday feel special.

This was the first year that Isaiah was really into opening his presents- like he understood it! He realized that there would be something fun under the paper and it was worth the time to rip at it.

video

He can't get enough of his pretend food.  (Both of these sets were made by Learning Resources and the quality is fantastic!)

Once Thursday came along, we had just a few more presents for Isaiah to open and he was absolutely thrilled again.

Thanks to everyone for helping us celebrate Isaiah, whether you were here with us or wishing Isaiah a happy birthday from wherever you are, your celebrating with us was felt.  It is so much fun to see Isaiah grow another year older. <3

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Sunday, August 7, 2016

Isaiah's Big Boy Room

With Isaiah becoming a big brother soon, it's about time that he moves out of the nursery and into his very own big boy room! I did a TON of changing my mind when it came to every aspect of this room...We wanted to create a space that would grow with him. We wanted to create a space that was accessible. We wanted a simple theme.  

Ready to take a tour of Isaiah's big boy Pirate room? 

This is what you see when you enter the doorway...

To the left is a shatterproof mirror at his height for him to play, brush his teeth, brush his hair, and just plain check out his handsome self. To the right (not visible in this picture, but is down below) is a cabinet that holds some of his clothes.  The bookshelf straight ahead holds his tshirts, onesies, and pants- all folded and accessible to him. The shark above the shelf is from Target (and so are the amazing blackout curtains! They are fantastic!)- both from the Pillowfort collection.

The lamp on top of it is from Disney World! One of our cousins interned there and had this very cool lamp that used to be in the lobby of The Boardwalk Resort.  How cool is that? Thank you again, Micheal!!


Under the window is his clothes hamper, which isn't a permanent spot quite yet. To the right is what I lovingly call "the parking lot". It's an area where we'll keep various equipment (instead of having it all over the living room).  The decal on the wall is from Etsy. 

And here comes a picture of what I think will be considered a controversial choice for a bed....


Isaiah now has a twin junior loft bed! This baby is fantastic! It is the perfect height for Dave and I to get Isaiah in and out of the bed and there's room for him to play underneath for now! 


We have the bed turned so the ladder is against the wall for now. Isaiah isn't able to sit up on his own yet and can't roll completely over- although the pictures are deceiving, there is plenty of rail to keep Isaiah safe and sound in his bed. 

When I've shown these pictures to friends with kids, they are clearly skeptical and worried. I'd never put Isaiah in a situation that is unsafe.  I think my friends picture/ combine their kids ability/mobility and Isaiah's fragility. At this time, he can not get himself anywhere near over that bed rail.  Once he shows any sign of being able or interested, we'll place a mattress (literally) on the floor underneath so that he will be able to transfer himself completely on his own. And someday his brother will join him in this room up on top. 

But for now, the underneath is Isaiah's favorite place in our house...but more on that in a minute. 


Oh, and notice there is the cabinet I mentioned, I have a tension rod in there with all of Isaiah's hanging clothes. 


I tried to get a picture of the room so you could see every angle. We've circled all around so you can see the doorway from the hallway in the picture below...


But as for Isaiah's favorite place? I've had some fun...continuing to overthink the accessibility. 

We're using the ladder as a place to house some of his favorite cars and trains, his piano is under there, and at some point we'll have something educational and fun on the back of the cabinet (a calendar maybe? I'm still deciding.).  On the wall is a 30"x14" magnetic board with some letters for Isaiah to have fun with and have a "word party". 


And then there is his toy chest that he can access from his Firefly Scooot. Some of his favorite books are up on top and he loves reading them under his bed. 


I hope to add some kind of rope or string lights under there at some point, I just haven't decided which kind yet. 


Isaiah is just starting to pick his clothes. The rod is a little high for the scooot but he's also getting used to reaching up again after a recent arm fracture so once he learns to trust his body, he'll be grabbing things off the hangers in no time. 


Big kid!


He can even put his own laundry in the hamper! I knew what I was doing picking a foldable hamper ;) (ha I totally grabbed it for the pirate design and this is a very happy accident!)


So there you have it! A look at Isaiah's new room! 


It is clearly Isaiah and Carl approved. :-p 

Monday, August 1, 2016

Bye Bye, Machines!


Remember Isaiah's beginning?  Remember when Isaiah was admitted back into the NICU (precautionary and because they knew him there) for his very first full dose of pamidronate (what many in the OI community call "bone juice") and he went into respiratory failure?  And then things changed.  He had to fight for his life, he was put on new supports...instead of just needing oxygen, he needed extra pressure to help him breathe so he was put on a bi-pap and then a c-pap and he wore that 24/7.  He went home on the c-pap, was diagnosed with severe obstructive sleep apnea...we had night nurses taking care of him, and we had a new normal.


and before we knew it, it was 6 months later, his obstructive sleep apnea was downgraded to moderate, and he was weaning off of that c-pap during the day (including nap time).


and then we weaned him off of needing to sleep with any supports because his apnea was downgraded again to mild...he just kept getting stronger. We said goodbye to the main c-pap that we had around...and only kept the travel stuff as a precaution (in case he got sick).  


But now?  As I mentioned in my last post, we've gotten the results of his recent sleep study....and his obstructive sleep apnea is gone.  He still has a mild typical issue (that I can't remember the name of right now) but Isaiah's doctor officially discontinued our prescription for the machines and we have newfound closet space (just in time for baby!).


Don't let the door hit you on the way out, Masimo and Trilogy. :-p

I have had a love/hate relationship with these machines.  They were so intimidating; all the beeping, tube switching, new things to learn.  They limited how we moved Isaiah.   Sometimes they held us down, making us feel a bit trapped. 

But..They helped us monitor him in ways I never expected to monitor my child...I could get a quick view of his heart rate and know if he was asleep, awake, hurting, etc.  They let us be at home, instead of living in the hospital, while he gained strength.  They helped Isaiah's body breathe efficiently while it got stronger, while he got stronger...


and for that we are eternally grateful. Every second that Isaiah was on those machines was worth it.  They brought us to where he is today.