Jaime's World: 20/30

What in the world does THAT stand for?
Well, I am pleased to announce that Jaime is FINALLY and OFFICIALLY 20lbs and 30 in. tall!
WOOOHOO!!! So what does this mean?

FORWARD FACING CAR SEAT!

I took Jaime to The Cleveland Clinic today for an extremely L-O-N-G appointment...we got there at 1:00 P.M. and left there close to 5:00 P.M. We saw ENT, GI, SLP, and Pulmonary. While Jaime has lots of issues to work through....overall he's doing GREAT! ENT put a scope down Jaime's throat to check his vocal chords...all looked well! The best conclusion they can come up with for the apnea is Jaime's tracheal malacia. For those of you who don't know what that is, it's basically a "floppy airway." They think because it's so random when it does happen and it's often positional. The good news is, his apnea, in general, isn't horrible, so we're just going to monitor it for now until there's a need to intervene. Oh and ENT put Jaime on an ointment for his nose so that it doesn't dry out causing him nose bleeds. It's a preventive thing. I joked with him about writing a script for Jared since he, too, has nose bleeds, he said you're getting 2 bottles a dose, use one on Jared, too! HA! Oh and this ointment is only administered at The Clinic, which is why we've never heard of it before.
As for pulmonary....he thinks Jaime's lungs sound really good, he was very impressed with his progress, though a chest CT is still in Jaime's future due to his "hazy" right upper lobe on his chest x-ray. No one is 100% sure as to how his lungs will grow with him, as the Pulm. explained to me, the lungs continue to grow, with their largest growth being through age 3. We'll have a much better idea after that as to what the future holds for Jaime. Since his left lung is good (barring any future issues), Jaime should have a great prognosis. :)
Moving on to our SLP visit....Jaime's pulmonologist is "clearing" him to attend the Feeding/sensory outpatient clinic. Well, at least during the non-flu season months! He will still receive his in home therapy, but he will also be attending the outpatient clinic for feeding, well, as soon as there's an opening, apparently there is a wait list, but Jaime's pulm. is going to try and push him ahead. He is sooooo incredibly far behind in feeding, they want to try and help him before he gets worse and does end up needing a g-tube. Which brings me on to out GI visit. His GI dr. said that we have to go up on his Miralax (simply to keep him more "regular"). She also wants to do another Ph probe (a test to measure reflux) on Jaime, just to see where he is now, as his last one was done during his first NICU stay last July. Other than that, no changes!
While it was a really long day, it was fantastic to see 4 specialists in one place at one time! At the end of the day, they all get together to discuss their cases to come up with a care plan for their patients! They will call me and let me know what our next steps are! I'm so excited that we found this team, even more excited to have a group of physicians on Jaime who really care about his overall, long-term well being. It will be great working with all of the CCF and Cincinnati physicians, with his RB&C pediatrician and hematologist mixed in there! This is how health care should be! We should all be allowed to be selective on who we have care for our loved ones and ourselves! I'm so grateful to have the opportunity to make this happen for Jaime. I finally feel like I can "breathe" a little bit knowing he has supportive medical team caring for him! :)

Here are pics of Jaime getting his hair cut yesterday. It's technically his second (third if you count his NICU one) haircut, but it's the first "real" one where he had actual length cut off of his entire head...not just the sides like his first one. He didn't like it, but in the end....as you can see in the car seat pic, his hair looks adorable! Jared got his hair cut, too.