Therapy Roller Coaster!

Just when you think the roller coaster is coming to an end....to quote Emeril....BAM, it starts right back up again.
For the last several days, I, along with our home nurse, Dale, have been searching for a new home therapy team to treat Jaime. I am so dissatisfied with the team we have, not to mention Jaime is certainly falling through the cracks. I've had my monthly visits from the Early Intervention department, there are some things Jaime is doing very well...and then there are things he should be doing by now and isn't.
Anyway, I had mentioned in previous posts that I was trying to set up home therapy with the Cleveland Clinic. Well, as of Monday, they denied his case....and so the roller coaster begins.....
I couldn't believe that they could just dismiss physician's orders, but they did. So, Dale and I spent countless hours calling other hospital systems and organizations in Cleveland. We found out that there is honestly no in-home help available to pediatric patients. It's so sad because we have world renowned medical centers in Cleveland, you'd think they would offer adequate rehab services.
Meanwhile, Jaime's therapists hadn't called to schedule for this week, so, yesterday, after much discussion with Jaime's pediatrician, nurse and case worker, I decided to have Jaime's case closed with them. I figured I could take him to an outpatient clinic once a month and stagger my EI visits so that he will have therapy once a week with someone.
After thinking about this all night...and literally getting no sleep, I decided that I really didn't want to chance taking Jaime to an outpatient clinic, so I called our current team's manager. I explained why I wanted to discontinue services and asked if she had anyone else available. Well, turns out, she DOES have a different Speech Pathologist available who does both peds and adults. She is going to send her here to evaluate Jaime...and their OT is coming back on Feb 1st. In the meantime she was going to sit our PT down and express our concerns to her. I agreed to this...again, I'm not keen on taking Jaime out to a clinic. OK, I get all of this set up and just after 5:00 P.M. today, our case manager calls and says, "Cleveland Clinic has accepted Jaime's case and he will be getting PT, OT, and SP from their home service team." WHAT? After all of this time going back and forth with them, NOW they decide to accept him? We have no idea what changed their minds, but they are going to accept him. The only issue now is that services with them will not start for about 3 weeks due to scheduling issues. So, in the meantime, we are going to keep our current home care with the new therapist arrangement and see how that goes. Once CCF is in place...and we see if we like them, then we will close our RB&C case. CRAZY, huh? Like I said...roller coaster! OK, I must admit dealing with all of this has been more of a nightmare than anything! I'm just glad that tonight I can honestly say that we have a good plan in place...and I think I may be able to get some rest tonight (that is if Mr. Jaime allows me to).

Speaking of Jaime...he continues to have bad apnea spells...not sure why. Any other CDH parents or preemie parents find this to be an issue with their babies? Tom and I were talking tonight that we think that's why he doesn't nap and sleep well at night. When he starts breathing again, he always chokes and gags (sometimes throws up), thus making him wide awake. This poor little boy is sooooo tired, you can see it in his eyes. I have scheduled an appointment with his pulmonologist on the 27th. I'm hoping he will be able to help us with this issue...or at least point us in the right direction of someone who can. Other appointments coming up...Monday, Jaime will have his 9 month old "well check," yep, we actually DO go to the the drs, when Jaime's not ill! Tee, hee! And on the 22nd he'll be going to the allergist. (Actually Jared and Jaime will both be going.) He's supposed to have some crazy swallow, feeding test on the 20th, but I think I'm going to postpone that until he has another SP eval.
Now, a bit of exciting news before I close...Jaime FINALLY cut his first tooth. Back in the NICU you might remember me saying that the corner of the top incisor came through, well this is the bottom front right tooth. The whole thing popped up, not just a corner of it. This happened on Monday...and now the one next to it is trying to pop through!
Other good news, Jaime's continuing to eat like a champ...3 "meals" a day. He eats the most for breakfast, usually baby oatmeal with some sort of fruit and cinnamon, of course! He's still continuing to take several bottles a day, too. He's definitely getting heavier when you hold him. Unfortunately, my home scale is malfunctioning, so I won't know exactly how big he really is until Monday. I'll be sure to share that info when I get it! Here are some pics of Jaime from today!

A sleepy baby at the table for dinner tonight.

Jaime LOVES his Boon Spoon...I do, too.

Jaime in his first pair of "big boy" pjs.
Oh and who needs toys when you have O2 tubing?

Show me your new tooth... NOPE!

Good night, all!