Busy, busy, busy....

So much happens between posts, sometimes I can't keep up with everything! Some "hospital" news to share...we are in the process of finding a new one here in Cleveland to care for Jaime's "immediate" needs. Our current options are The Cleveland Clinic and Akron Children's. I met with a wonderful pulmonologist on Monday from The Cleveland Clinic (CCF). Let's put it this way, Jaime's appointment was at 10:50, I was walking back to my car at 1:05. Why you ask? Well, it wasn't because I sat in the waiting room, it's because I sat in the room with the doctor the entire time! Yep, a doctor who actually cared about Jaime and his issues. Oh and get this...my first question to both he and his resident: Me: "Have you ever seen a CDH'er before?" Dr. Joshi (resident) and Dr. Carl (attending): "absolutely, we see several." What? a Cleveland dr. that KNOWS what CDH is? Oh and Dr. Joshi studied at Cambridge in England, he said their initial protocol for CDH'ers is to automatically intubate through the nose, so not to create an extra oral aversion with the breathing tube being in for so long on these little ones....hmmmm!
Anyway, we talked about all of Jaime's medical issues/needs. Dr. Carl (ironically a former Rainbow's dr.) has offered me a place in his "team" approach group. Apparently, this is a new thing that CCF is starting and only happens the first Thurs. of the month, but this is a team for children who have chronic issues that cross 2 or more disciplines. For example, we would have Pulmonary, cardiology, GI, nutrition, and speech therapy as part of our team. Having said all of that, he also would like to refer Jaime to CCF's feeding clinic. Sounds pretty great! The only problem with all of this is, that CCF has no Hemophilia Treatment Center (HTC). If Jaime would need another bronchial scope (which he will at some point) or an endoscopy, we would need hematology involved, things get a little tricky when hospitals don't have HTC's. (Hence the reason we ended up at Cincy and not at just any hospital known for their CDH care, Cincy has a CDH team AND a Hemophilia Treatment Center.)
Other CCF news, Jaime has OFFICIALLY been accepted into their Home Care Therapy program! This won't start until the end of March, but I was thrilled to get the call! For starters he will only have OT and SP, as the PT schedule is too full right now, PT will probably be added in April. Personally, I think, at this point, with all of his sensory issues, OT and SP are just what he needs. (I do like the new OT and SP that we have, but I'm still not thrilled with the PT who just happens to be the team leader of Jaime's case.)

OK, as for Akron Children's Hospital...this is a 45 minute drive for us, as we live in Northeast Ohio, however they DO have an HTC. I recently spoke with a wonderful cardiologist from there whom we will be consulting with on Monday. I want to see what he has to offer, then we will weigh our options and choose a facility. Sound familiar? Yep, we're in the same spot we were exactly one year ago, except the difference is, Jaime's HERE and we KNOW what his medical issues are!
Wish us luck! If it were up to me, and if we lived 5 hours closer, we'd ONLY use Cincinnati, but that's just not possible for long term care. We will, however continue to meet with the high risk clinic and other disciplines as scheduled (3-6-12 mos.) and of course if Jaime ever needs surgery again, it will ONLY be done down in Cincy.

So that's the latest news. Like I said, I feel like we're back to where we were a year ago, but it's great to have Jaime. He's such a little stinker anymore. I keep telling people that his mind is a 10 1/2 month old, but his body isn't. Therefore, he "tries" to do 10 mos. old things....like he always tries to kick Jared when he walks by or clobbers his head for no reason. Also, he refuses to do some things during therapy and will throw himself down in defense and not move. Or his new thing, he shakes his head no. It's kind of funny because he's doing it at appropriate times. (He also does it when we holler at Jared, naughty little baby, making fun of his bro.)
He's still crawling backwards and sitting up like a big boy. We are all working very hard with him to crawl forward, but only minimal luck so far. He is starting to get the hang of sitting and rolling down to his knees, though!
As for eating, I'm still keeping my feeding diary, we meet with the nutritionist tomorrow. I'm eager to hear what she says! He's still not taking a high volume of purees, but is loving his puffs. I have a strange feeling that Jaime's going to be a lefty like his Daddy! He grabs all of his food with left hand and plays and reaches for toys with his left hand, it's definitely his dominant side at this point! We'll see!

Before I go, I'd like to ask for you all to keep Maxton and his parents in your thoughts and prayers. Maxton would have been one year's old today, sadly, he's celebrating in heaven. Ashley and I were pregnant with our CDH boys at the same time, supporting each other, she and her husband are wonderful people. I'm pleased to say that they are expecting again...in September! :)
And a final reminder to everyone interested, March is CDH Awareness Month. We are collecting quilts or small silky, "cuddle" blankets for the NICU that cared for Jaime in honor of CDH Awareness Month! Hope that you will be able to donate and spread awareness about this awful birth defect! Thank you!