Tuesday, April 20, 2010

Our Week So Far

We started off early yesterday with a visit from Collin's nutritional therapist at 8:15 in the morning! He has gained half a pound and grown a half inch, which puts him ABOVE THE 5TH PERCENTILE!!! His head growth has stalled over the past few weeks and is still below the 3rd percentile, but he can only be awesome at so many things at a time.

At 9:00, the rest of Collin's beloved therapists started showing up for his one-year IFSP (Individual Family Service Plan) meeting. We looked back at our goals from 6 months ago, tweaked some, added some, and distributed visits among the therapists according to Collin's needs. One exciting change is that we discharged his speech therapist so that Collin can participate in a study she is conducting on VitalStim therapy in children. No research has been done on this kind of therapy in children, but I know of some positive anecdotal evidence from other parents and we cleared it with Collin's neurologist before proceeding. Our hope is that the treatment will help to strengthen and consequently coordinate Collin's weak facial and throat muscles, allowing him to start eating by mouth. His first session is this afternoon!

There is a bittersweet aspect to these meetings as well. It's difficult never to be able to check off a concern or say that a strategy isn't needed anymore because a goal has been accomplished. Also, the one-year meeting is unique in that it requires a Five Area Developmental Assessment to be completed. We used the Hawaii Early Learning Profile Strands to complete the assessment and Collin ended up in the 0-6 month range for virtually all relevant areas. I don't think I need to explain why that is hard. But it certainly wasn't devastating. It's not like I didn't know. People in public ask how old Collin is and I tell them and they raise their eyebrows. Because he doesn't act like a 14-month-old.

But the thing is - and we all acknowledged this at the meeting - that Collin IS developing. It's undeniable. It's just not happening at the pace or in ways that we can check off of a list. How do you quantify that 6 months ago, Collin didn't interact in any way with the world around him? That only three months ago, he rarely opened his eyes and had only recently started smiling consistently? He's a different kid in a lot of ways now - so much more conscious of the world around him and responsive to it. There's no box to check for that.

The rest of our day was calm and boring - 'just how we like it', as my friend Erica and I say - and we got up early this morning to try to beat the rush at the Children's Hospital Lab to get some bloodwork in preparation for Collin's neuro appointment on Thursday. Everything was incredibly smooth during registration and we were even able to get all the blood from a finger stick, but I didn't realize they were going to need a urine sample or I would have put a urine bag on him at home (of course I keep urine bags at home, don't you?). Because something about sticking that thing on makes Collin the anti-pee-er. He just won't do it. Granted, I don't know what it's like to have a circle of adhesive with a big plastic bag pressed on my private parts, but the alternative is a catheter, so I don't have a whole lot of sympathy. So we sat and sat. And sat. I finished a book. And watched CNN. And all of the fascinating people who flow through a place like a children's hospital. After over an hour, I decided to get a specimen cup and just collect the urine at home and bring it back down. So we packed up and trekked back to the TOP FLOOR of the parking garage. I checked Collin one last time to make sure he hadn't peed, then put everything in the car and was buckling him in his carseat when - you guessed it - he did it. I must have been slap happy from the morning, because I laughed and laughed as I took off the bag and collected the pee in the specimen cup. We got a good laugh from the nurses in the lab, too.

Our last stop on the way home was at the compounding pharmacy. I may have mentioned once or twice or a dozen times on here how much I love our compounding pharmacy. You cannot imagine a more friendly or personable group of people. They have saved our skin on so many occasions and the medicine I was picking up wasn't even a compounded drug - it was just a sugar free version of a very common drug. It's just that CVS and Walgreens can't do anything that their computer doesn't tell them to do and since their warehouse didn't have it, they just said that we were out of luck. Our compounding pharmacy found it in Texas and had it overnighted at no extra charge to us. They all know my name and Collin's name and the pharmacist stops what he's doing when he hears us come in so he can come see Collin. It's people like that scattered throughout the medical world that make this whole experience so, so much easier.


  1. This little fella is just doing things his own way and when he gets good and ready to do them.
    It has been great over the last few months to hear the delight and giggle in your voice as you record Collin's latest act for us to treasure. Transitioning into seizure control off meds has been hard work for Collin. With that under his belt, he can concentrate on other tasks.

    The urine collection is just another way Collin is exercising control over his world - he wasn't going to fill that bag until he felt like it. Especially not when everybody was watching.

  2. I think Collin deserves some kind of ribbon for not pooping while the specimen bag was hanging out down there. I mean we know how he feels about waiting rooms.

    Just sayin.

  3. I remember back when B's head dipped below 3rd percentile last year--I was so panicked about microcephalus! And then, it caught back up to 5th on its own and has since made it to 25th! Babies (and all their parts) grow and develop at their own speed. As you well know. :) Love that little man!

  4. Oh how we love our boring days!