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 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. :)

No comments:

Post a Comment