Surgery?!?

So a quick update...I've been in touch with Jaime's surgeon and GI dr. in Cincinnati a lot over the last two weeks. We have collectively decided to do some further bowel testing which may include Jaime taking yet another trip to the OR. Jaime's surgeon is talking about fixing Jaime's incisional hernia sooner rather than later, for a number of reasons. Jaime continues to have bowel issues. He's GREAT when we have him on purees and takes a combination of laxatives daily, however we can not advance his diet because then he starts to have bowel issues. Now, many, including Jaime's GI are actually OK with Jaime hanging out eating purees, but at 28 months old (TODAY), he should be tolerating diet advancement. My fear is that if we continue on this pureed diet, we will miss our window of opportunity to teach him to eat normally, thus leaving us with even more significant feeding issues (eventually leading to a g-tube). I just think his bowel issues are crazy. Jaime's surgeon did shed some light on another issue that can be leading to Jaime's troubles, but it's a structural/functional bowel issue, one that we most likely can not fix. Having said all of that...we're working in coordination with Jaime's surgeon to do another round of tests and a trip to the OR with plastic surgery and hem/occ involved. I'll let you know more as things develop!
As a quick therapy update...Jaime's speech therapist was here and has told us that Jaime is mashing his food up with his tongue and roof of his mouth, rather than chewing food. She's putting him back on a weekly schedule, especially in hopes that we can advance his diet. Additionally, she said his speech is "coming along." Not where we want him yet, but he's getting there. He's quite the little parrot...or at the very least tries to be! I love his silly little phrases, they're so cute! As for PT, well, we still have ourselves a toe walker...and there's not a whole lot we can do. The orthotics don't work because they bruise him too badly (stupid hemophilia). PT will be back to at least twice a month at home and once a month at the early intervention school. From an OT standpoint, Jaime has regressed. So, that's the theme of this post, really. She'll be back to twice a month, as well and once a month with EI.
So, that's the latest! Again, I'll keep everyone posted as things develop and get closer to us going to Cincinnati. While this is a bit stressful-trying to figure out the details and timing of things with Jared and Tom going back to school and me working now-and disappointing-that my baby has to go back to the OR again...I have FULL confidence in Jaime's surgeon, he's amazing and we are so thrilled to have him part of Jaime's (and our) lives!

Just another reminder, we're still accepting donations for the Annual Hemophilia Walk, check the post below for three different ways that YOU can help! THANK YOU!