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Friday, September 18, 2009

EI, Pulmonologist, Eye Doctor...oh, my!

What a week! So glad it's done, but, boy, do these weeks fly by when there is so much going on!

I finished out this week with a tiring, appointment filled Friday. I comforted...I rolled my eyes...I almost fell asleep...and I mentally did a happy dance. Yeah, that all happened today. Let's begin.

Christian had an early morning PT session today. He did a lot better than last time. I mean he wasn't 100% cooperative or loosey goosey like he tends to be with me, but he allowed the PT's to work with him. Not without protest, though. He doesn't seem to like his feet being messed with. I feel like something has switched on in his brain and he has been more and more responsive to pain with facial expressions and cries. Part of me is thrilled because this is a sign of progression (as opposed to laying still making no facial expression or sounds for the first 6 weeks). But part of me is wondering how much pain he's in. I feel like his legs are in pain. Or maybe his stomach? Hopefully, it will be short lived. Christian cried but not through the whole session like last time. Mommy comforted him and it was all good.

After doing my round for after school pickup on a half day (this was for parent teacher conferences...why have school if it only lasts 3 hours?..don't have the time to figure this out). Then I had Christian's Early Intervention appointment. The lady was nice, I guess. But this is how our conversation went.

"So what kind of services would you like for Christian?" - EI lady
"I want PT, OT, and speech 3-5 days a week." - Mama Bear
"We can't do that. We can only do 4 times a month for each service." - EI Lady putting her foot down. "Would you like PT or OT started first?"
(Insert eye roll here.)
"OT because it incorporates PT anyway for children his age." - Mama Bear
"Well, actually PT would be more appropriate for him to begin..." - Know it all EI Lady

Question: Why even ask me what I want then? Why don't you just write the service plan out yourself? You obviously have a goal in mind, don't let me stop you. Whatever you lack I'll just go out and find myself. I didn't have any more fight left in me and I was so tired and could barely keep my eyes open listening to her talk. It was a sufficiently boring and unproductive meeting. Do you realize that if I hadn't sought out Christian's therapies to start immediately, they wouldn't be able to start doing home visits until October 30th?!?! Unacceptable. We will continue with our 3-5 days OT, PT, and Speech we have on the calendar now.

The next appointment was with the Pulminologist. I was a little nervous about this because I didn't know if the pulm would be on the same page as we are in gearing Christian up for trach removal. Especially because (and I don't know if I've explained this) ultimately, the reason we had to go to Hacienda instead of straight home was because of orders from the pulm.

Well this one was great! She said she didn't hear anything in his lungs, deep breaths, and that everything sounded like we could start going down that path! First thing we'll do is get more aggressive with capping trials but make it easier for Christian by downsizing his trach. I'm so excited! (Insert mental happy dance.)

One thing I do want to work on is my patience level. I feel like I have none of it. I used to be really patient and Manny was the one who was short on patience. But as of late, we've swapped personalities. He's calm and patient with just about everything. For me...not so much. I feel like I have a list of things that have to be done and something unexpected doesn't fit. So if something unexpected happens, I feel panic. It's so silly because I've never had any issues with panic. But all of my patience is spent on Christian so I have nothing left when it comes to everyday things that pop up. Maybe it's pregnancy hormones, too. Those always make me impatient. Even listening to people talk, for example, tends to make me a little crazy if they can't get to the point. I'm not talking about my everyday interaction. I can BS all day with people. I'm talking about medical professionals that want to "chat." It's like, "Okay...hurry up...let's go, I've got things to do." Isn't that awful? Anyway, I'm rambling.

Oh yeah, I didn't mention Christian's eye appointment, I don't think. He did fine. It's exactly what was presumed - Cortical Visual Impairment. This means his eyes work fine, but his brain is trying to make sense of what's being transmitted through his eyes. The doctor remarked that he doesn't tend to scan like a lot of neuro kids do and that's a good thing, I guess, because he can lock into things and focus somewhat. Christian was also able to lock into some of his spinning toys. But we need the diagnosis for additional services to stimulate his visual development so whatever. The doctor said that CVI only gets better as the brain gets better so as we see more brain function and improvement, we'll see more visual improvement. Cool.

As for Mr. Christian, he's doing well, but as I mentioned, he seemed more agitated or like he's hurting somewhere. I was massaging his hipbone and he started to move his leg. Not in the flexion sort of way that he always does where he straightens his leg and points his toe. This was actual movement with a bent knee and flat foot. That's it! He's ready to run. He's in the hyperbaric chamber right now with Daddy and they're oxgenating away!

I'm sure all this medical jargon is fascinating to you, but if you're still with us, thank you so much for keeping up! All your thoughts and prayers have made a world of difference. I was sorting through some of his cards he got in the hospital and remembered how much despair we were going through at the time and how every single call, note, hug, and prayer meant so much to us. I was also thankful for just how far we'd come and how settled into our new normal we've become.

Ahhh...the weekend is here.

6 comments:

colekd said...

You are such a good Mommy! I know it's been said before, but you truly were meant to be Christian's Mom....look at all the fighting you do for him. I so agree...why'd that EI lady ask you any questions? I hope you're able to get some "me" time, you sound so busy on a day to day basis. Take care & have a great weekend! Karen

Rochelle said...

Glad to read the update this morning and see how Christian is doing better each week. Thank you for updating us and keep on keeping on. Hope the new downsizing trials on the trach go great, too!

therextras said...

Just one suggestion re: EI - if there is a paper that says the EI agency can bill your insurance for therapy, you might not want to sign it. Here if the child receives private therapy EI will not provide ANY therapy, even 1x/month.

I have a short series of posts on EI - linked in my middle column.

You seem to be managing very well - don't be too hard on yourself (being impatient).
Barbara

gavman306 said...

I love coming here to read your updates! Great news on the capping trials, he is such a Superman! I am very impatient with the things you are talking about, and I don't have half going on as you do, don't beat yourself up. You are doing a great job!!

Mandy said...

I stumbled onto your blog through facebook and have been following it from the very beginning. I try to catch up most days and rarely finish reading without tears in my eyes (or running down my face!). You are such an amazingly strong mother - a true inspiration to me! I have a 19 month old little boy and can't imagine how I would handle all that you have. You are such an amazing woman. Your persistance in asserting that you know your child best and you are the best judge of what is good for him is so right and has made me more aware of that in my own life. I certainly haven't had the challenges that you have, but in my own little world I think of you in dealing with my own son and his doctors and have made a point to be his advocate! Christian is such a fighter and so much reminds me of my boy. I know that with you as his chearleader he will accomplish amazing things! Though I don't know you, you all are never far from my thoughts and stay in my prayers. I so look forward to hearing about all the amazing things Christian is going to do!

Eliisa said...

I love reading your updates, and am consistently amazed at how positive and proactive you are for your son. You rock my socks! Don't worry about getting impatient with people...we all do it, and you have better reasons than most! Hang in there...I can't WAIT until we see those videos of Christian running and bouncing off the walls!

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