Saturday, May 19, 2012

Keeping Up

Recently, it feels like all I can do to keep up with Collin and his crazy schedule. Here's a summary of his recent doings. Grab yourself a snack, because it's going to be a long one.

1. BiPAP - Collin has made some huge strides with adapting to his BiPAP machine. We instituted a slow and involved acclimation plan and he did fantastic with it. By the fifth day, he was sleeping through his nap with his mask on and at full pressure. Now, he uses BiPAP during every nap and calms down very quickly after getting the mask on. Actually, I think he's ready to move to using it overnight, but we're having issues with the alarms, which had us running to Collin's room every 30-60 minutes during our first overnight trial. We're trying to work that out with the respiratory therapist and hope to make the transition soon.

2. TAOS - We also decided to move to a slower acclimation process with Collin's TAOS. There were just too many new things to get used to at once, so he ended up kind of freezing up and doing nothing with his legs(even though he continues to look fabulous whenever he gets all the way in it). We started out by putting the huge, heavy shoes on him throughout his normal routine. He has become very accustomed to those and even seems to enjoy them for the maximum impact and noise the metal plates make when he kicks things. Our next step is to start using the orthotic (the part that goes from his feet to his armpits) during some of his daily activities, hoping to get a similar effect.

3. Anemia - It's gone. We had our retest last week and all of Collin's iron and hemoglobin levels are completely normal again. Everyone was surprised at how fast it happened, given the severity of his deficiency, but the pediatrician felt comfortable starting a wean from the iron supplements. So, hooray! One less issue!

4. Neurologist - We spent the morning of Oaks Day with Dr. Awesome for the second year in a row. It was, as usual, a very in-depth appointment during which we discussed everything from Collin's neurological development to possible causes for his anemia to his wardrobe. We agreed that it would be fine to continue a while longer on the ketogenic diet, provided that Collin's blood levels remain within normal range. He did explain that he doesn't believe that the ketogenic diet changes the natural history of an individual's seizures. Rather, many children outgrown their seizures and the ketogenic diet is able to provide control until that happens. I'm not sure if this is the general consensus or even whether I agree (not that it matters, I guess), but it was an interesting point.

5. Ophthalmologist - Another trip to the ophthalmologist, another morning wasted. I shouldn't say that. I at least had some good quality time with Collin in the waiting room. The doctor told me one more time (in case I hadn't caught it yet) that Collin's vision problem is in his brain. His possibilities for the future are either that his vision will stay the same, or that it will slightly improve. Unless he has seizures or something, in which case it might get worse. Awesome. He also used the phrase "bless his heart" too many times for my preference.

6. Endocrinologist - Collin's endocrinology checkup was positive and uneventful. His growth looks great and the endocrinologist commented that Collin "looks like a million buck" in terms of health, specifically mentioning his "strawberries and cream complexion" that is "the envy of teenage girls everywhere."

7. School - We have pretty much decided not to send Collin to school this upcoming school year. However, we've also decided that we're open to sending him when he's 4 if we find the right place. So, this week we visited a public school that would be equipped to both handle Collin and challenge him and Monday we will be visiting a private school that we hope will be equally as capable, just to give us an idea of what we're dealing with as we head into the next year.

8. Van - Collin got a van! It's a new-to-us-used Toyota Sienna and he loves it! He especially enjoys how much less crabby and decrepit his mama is now that she doesn't have to maneuver him in and out of the tiny Corolla door.

9. Growth - Collin is huge. He has grown over another half-inch in the past month and gained almost another pound. His head circumference is still increasing (to accommodate his amazing, growing brain). He is really fitting into his 3T clothes now, which makes this the first time ever that Collin has plotted on the growth chart and worn age-appropriate clothes.

10. DME - Because of #9, Collin is outgrowing things and it's time to get serious about thinking through what he will use for mobility long term. We had a great meeting with Collin's wonderful PT and DME (durable medical equipment) representative. Our conclusion was that since we will not be sending Collin to school next year, there is no big rush to get a wheelchair. Rather, we will be getting something more like this - sort of a big stroller that breaks down quickly and that I can easily get in and out of the van. Insurance counts this as a wheelchair and will only pay for one every five years (biting my tongue, biting my tongue), so we will try to get this one through a local organization that helps families of kids with special needs and then order a real wheelchair through insurance later, when we have a better idea of what Collin will actually need.

11. Michelle P - Collin got approved for another year on the Michelle P waiver! This is the Medicaid waiver that allows us to hire people to come into the home to provide Collin with community living supports (therapy, outings, etc.), personal care (g-tube feeding, positioning needs), and respite (plain old fun). It is a support that has made all the difference in the world to our family and it brought two of Collin's favorite people of all time (Hi Heather and Amy!) into our life. Talk about a good use of tax dollars.

So now you're pretty much up to date. We are hopefully nearing the end of this crazy busy spell and will be able to write some posts that aren't just ridiculously long lists.


  1. I have several comments. I will not bore everyone with my ohhs and ahhs and AWESOME to each individual item BUT specifically
    4. I would like to know Dr. Awesome's wardrobe commentary!
    6. Couldn't agree more! In fact, now seems an appropriate time to confess I resent his gorgeous skin. Bottle that up and send it my way Collin!
    10. I am under no obligation to bite my tongue and I think that's BULLS&*^.

    That is all!

  2. As far as the chairs go this is what we did. :) Emily got a special tomato chair a while back and our DME assured us when the time came, which would be within the 5 years, that we would be able to justify the actual wheelchair for transportation reason. It worked because we have Emily's wheelchair and never had one question about it. I think it's all in the wording. Sucks having to pull teeth to get everthing they need!