I really wanted to update the blog every day this week...but 4am wake ups and 1.5 hr long drives back and forth to DuPont left us super pooped!
Haha. Mom said "pooped".
We traveled to DuPont Tuesday through Thursday for Isaiah to get his pamidronate (pam) treatment. Pamidronate is helpful to many kids with severe forms of OI; it strengthens the bones, helps them grow, and really helps relieve the chronic bone pain that people with OI feel. Isaiah currently gets his Pam every 8 weeks (he'll go longer stretches as he gets older). He used to get it through IVs, but since he got his surgery last week, he now has a port, so no more scary IVs for our cute guy!
Day 1 went well. It started later than anticipated due to some routine questions and a hold up in pharmacy, but Pam was flowing by 9am. You can see Isaiah's port is accessed under his shirt in the picture below.
This kid loves his Pam; it always makes him fall asleep. He actually didn't sleep as much as we expected him to the first day, he was very interested by his surroundings, so this moment of quiet was quite the gift. ;)
Day 2 went extremely well. He was started early and since his port was already accessed from the day before, it was quick to get his Pam flowing. You can get a better picture of his port below. (I may or may not share a picture of the port now that it's not accessed, for now you can see it accessed- meaning there's a needle in it, Pam is flowing, and it's taped to keep germs out.)
Isaiah spent the majority of day 2 in my arms. He had a number of bouts with gas, so cuddling was the best medicine for that (well cuddling, and gas drops).
We also got to spend some of day 2 seeing our buddy, Super Silas, he has type VIII OI. TypeVIII shows a lot of symptoms of type 3, except kids with type 8 don't have the blue sclera.
His mom has been a big hero to us; a lot of the clothes you see Isaiah wearing comes from her and Silas. She also introduced me to a number of supports for Isaiah. She actually gave us one of Silas' Snuggin Go pillows...we put it in Isaiah's car seat as soon as we got home on Wednesday, then Isaiah went in. He LOVED it. Look how straight he's sitting!
The car bed's time is coming to an end....
No, seriously. He's honestly getting too big for the car bed and we needed to just man up and switch him to his seat. The Snuggin Go was the last push we needed....
Day 3 brought bravery for Dave and I-
Isaiah went around DuPont in his car seat and stroller!
He was SO comfy! And we were ready to begin our last day of the Pam cycle...
Happy baby alert!
Along with getting to hang out with Silas, Isaiah also had an extremely special treat. But first, an OI lesson...let's see if I can get this right...
OI is a mutation of a chromosome. The mutation can happen on different chromosomes, truly making each person with OI comparable to a "snowflake" (each one unique). Not everyone with type III looks like Isaiah. Not every one has bowed bones like him, sclera like him, a need for the C-Pap like him....each is different.
When Isaiah was born, we had some of his blood sent to a lab to confirm the OI. OI type III was confirmed. At the time, there were only 2 others in the database with Isaiah's exact mutation- 1 little girl in Great Britain and 1 fetus with no other known information (we presume this snowflake passed or was terminated)....There were only 2 others, now there's 3.
I'd like to introduce you to Isaiah's OI brother and future BFF, Gavin.
Gavin is 3 months old. He has the exact same mutation as Isaiah. This is such an amazing thing to Gavin's parents and Dave and I. Now there are a total of 4 known people with this mutation- 2 of which live in the same state and go to the same hospital for care.
Gavin's a really strong little guy. He's also on a Trilogy machine (and currently weaning) so you'll notice that they even have matching canulas.
This picture is dying for a funny caption. lol.
Luckily, Isaiah is on the same Pam schedule as Gavin, we're hoping to keep it that way so that they can grow together. How amazing is this? Two people with the same mutation, only 3.5 months apart in age, living so close to one another. They are two lucky boys, for sure.
We loved our experience in Day Med this cycle. They were great in letting us hang with Gavin and his family, and even letting us put the boys in the same bed on the last day for the photo shoot above. :)
After Pam was all over for this cycle, we said goodbye to our friends and headed up to the surgical area for a post-surgery appointment. Everything looks great and Isaiah is progressing just as he should.
I'm hoping to write up a post soon about Isaiah's port and its benefits. I'm also hoping to finally share some exciting news about Wishbone Day 2014. :)
Don't forget to move your clocks forward tonight! One less hour of sleep? Worth it for the extra daylight, don't you think?