Friday, May 25, 2012

Traveling With Collin

We have spent much of the past week gearing up for our most ambitious adventure yet with Collin. Over ten days, we'll be visiting two major cities, seeing some sights, visiting with family and friends, and doing lots of driving. The amount of planning that goes into a trip like this is even blowing my mind. I have nine separate lists going. First, there are the plain ol' logistical issues (Collin doesn't sleep well in new places; Collin is sensitive to heat and sometimes loud noises [the rest of the time he loves them]; Collin will not UNDER ANY CIRCUMSTANCES go in his diaper in the car seat. He will grouse for miles and miles but he will not give in. A great problem, I know, but it does require some rearranging of the food/water schedule if you actually want to get where you're going at any point.) And then, there is the stuff. So, so much stuff. I tried my best to consolidate things, but here is the final list of what Collin* will be taking with him on this journey:

- toys, books, and whatnot
- a sufficient number of sufficiently cool outfits, including shoes (Collin thinks 'outfit' is a girl word, but there is no guy word for clothing items that match each other. Hm.)
- hats and sunglasses
- jammies
- undies
- dipes & wipes
- potty
- potty mat (to protect the surrounding area from potty-related disasters)
- bibs (the cooler triangle ones that match his outfits)
- bibs (the ugly terrycloth ones for practicing eating)
- feeding tools (spoons and utensils for all of the warm-up practice)
- ketogenic food to taste by mouth
- button covers
- button cleaning supplies
- extra g-tube in case his needs replaced, with all supplies required to do the switch
- Collin's mattress (this is a new thing we're trying in hopes of alleviating the aforementioned sleep issues)
- bedtime stuff (toothbrush/paste, toothettes for rinsing, bath stuff, blankets, paci)
- video monitor
- ketone/glucose checker with enough strips/lancets
- iPad (not that we ever leave the house without it, but I list it here because it doubles as a sound machine)
- all necessary chargers
- nebulizer with breathing treatment meds
- oxygen concentrator (On a shorter trip, we just bring tanks, but on a longer one, it saves space and hassle to just bring the whole concentrator from home. It is about the size of a kitchen trash can and weighs about as much as a kitchen trash can full of lead.)
- oxygen tank (so we don't have to lug the concentrator into the hotel for just one night)
- cannula & backup cannula
- because we are still having issues with the alarms, we opted not to bring the bipap machine or pulse ox monitor
- growth hormone with all necessary needles, alcohol pads, and materials for reconstituting new vials
- all other meds (probiotic, carnitine, CoQ10, B50, Vit D, melatonin, iron, Vit C) & associated materials (syringes, pill cutter, crushers)
- Vitamix (only necessary on a trip longer than 5 days, like this one)
- digital gram scale
- meal supplements (branched chain amino acids, multi vitamin, fiber supplement)
- hard-to-find-at-the-store meal ingredients (special coconut oil, etc.)
- meal syringes (60cc, 1/day)
- extensions (actually connects to the g-tube, 1/ 5days)
- venting syringe (for burps)
- chairs (Collin can't just sit in any chair, so we bring his fold up camp chair for most situations and his booster chair [which is really probably too small at this point] for sitting at the table at home or restaurants)
- Boppy (which barely looks like a Boppy anymore because it is so squashed and used, but it is still great for tummy time and just general floor time).
- stroller and back carrier for sightseeing

And THAT, my friends, is why getting a minivan has made my life so much better.

*Please note that this list DOES NOT include anything the rest of his family might need or want to take on this trip.

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.

Tuesday, May 1, 2012

The Long-Awaited TAOS

After months of preparation and a 3 1/2 hour trip to Paducah, Kentucky, we finally have Collin's TAOS.

Though we were excited to pick it up, we knew that Collin might have a hard time with the lengthy fitting process and might not even tolerate being in the TAOS at all. The one they designed for him (each TAOS is totally customized - they even added Collin's name to the front and back and chose a cool orange for his accent color) did not have a head support for some reason, which I was very nervous about.

In true, Collin form, though, he did amazing. He endured the hours of fitting with almost no complaint and stood up like such a big boy as soon as we put him in the TAOS. It was surreal to see him standing there with no one touching him. He did not take any steps, which didn't surprise us. Besides the fact that he was still weak from being so sick last week, he prefers to take steps with no shoes on and with his butt sticking out behind him, and neither one of those is possible in the TAOS (which is a good thing). In a way, he is starting over. We're prepared to be patient, though, and cautiously optimistic that this will be a very good thing in the long run.

Collin's TAOS.

Collins new kicks: he wears special shoes with metal plates
installed on the sides that hook into his orthotic braces.

Going into the orthotic braces. 

The bionic Collin.

Into the TAOS for the first time!

Daddy helped him practice moving one foot and then the
other. Can you believe how great he looks?!

Daddy and Billy, the orthotist, worked on adjustments
up till the last minute. 


Collin also wanted me to give a big shout out to our special friends, the Hollands and Hughes, for making our trip extra memorable with a wonderful place to stay, lots of quality hang-out time, laughter, and good food. We always love a good excuse to see them.