I have a little of this and a little of that to talk about tonight. I'm not sure any of it will stream together to make sense, but here goes.
Last week we met with Early Intervention for our IFSP meeting. This is very common for special needs families of all types. It's a written out plan setting goals for Christian to achieve. I already don't like that. I threw goals out the window a long time ago. Honestly, IFSP's are documents that justify to the state why Christian needs the services he needs. So we dedicated about three hours to the whole thing. It was a long three hours.
We also had our pulminology appointment last week. "Pulminology?" You ask. Yes, this pulminology appointment is about six months in the making. Why? Because initially Christian had the appointment back in April to talk about decannulation (taking his trache tube out). Well, we all know what happened - he successfully decannulated himself! And I'm happy and proud to say we haven't looked back. But, I still felt we should do a "case closed" type of appointment so his pulminology doctor could see him, say okay, and we'd be on our way.
Well the initial appointment was rescheduled. The problem is that there is a two month wait to see this doctor. At the time I was like whatever. It isn't absolutely necessary anyway. Well over the last six months the appointment has been changed, missed (by yours truly), rescheduled, and so on and so on. I finally just asked if I could have another doctor just so he could see Christian and we could essentially "close the case."
I was late to the appointment. I was getting so good at being on time, too. I was so late, they asked me to reschedule. I asked if I could just get a nurse to come out and see that he was doing fine and did I really have to come back? Really?
The nurse came out, saw the famous self-decannulating Christian, and determined he was just fine. She said to call if there were any problems.
I know that little story was terribly interesting and you all were on the edge of your seats, but the bottom line is that as far as pulmonology goes...CASE CLOSED!!!!!
Last week we also attended an event at a new store in town called Nurturing Nature. The event was featuring Ben's Bells ornaments and I love, love, love this organization and I blogged about it here. I was so happy to have met the founder of Ben's Bells, Ben's mom, Jeanette, for the second time. The message behind Ben's Bells is to spread kindness because you never know what someone else is going through. As much as I may curse the accident, I am ever so grateful for the gift of clarity. It's a gift because I see things in such a different light.
As for Christian...his legs have responded really, really well to the Botox and I'm so glad we made the decision to do it. We can now bend his legs at the knee with very little effort. And they even stay that way! He doesn't necessarily need to straighten them back out.
We still have no throw ups! Yay! This is like a major deal in this house hold because him throwing up was a major part of our life.
Christian has been irritable and not himself lately but we're going through medication adjustments and changes and when that happens, we can't do anything really. We've been through medication adjustments enough to know the drill. And because adjusting medications is not an overnight process, we're in for a few weeks of...meh. More on that at another time.
We also have a few other things we're working on, one of which might include a trip to an intensive therapy program. More on that at another time, too.
Even though we're still battling seizure crap and medication troubleshooting, at least we've crossed off trache tube, throwing up, we've had ZERO hospitalizations and barely a cold, and we've conquered high tone in his legs for the time being.
Seizures, you're next!!!
Unicorn frappuccino for my unicorn
17 hours ago