Wheels!

Otis received his trial wheelchair yesterday! It is on loan to us for about a month, and is similar--but not identical--to the permanent chair he'll be getting sometime early next year...or however long it takes for health insurance negotiations to get settled. 

Otis was pretty grumpy when Robert, the wheelchair representative guy (I can't remember his official title, but I'm pretty sure it's not "wheelchair representative guy"), arrived, but seemed pretty content with it later in the day, after a good nap, when Daddy wheeled him around the neighborhood.

While Otis spends the next month getting acclimated the chair, we'll be paying attention to the pros and cons of this particular model so we can help Robert figure out what types of bells and whistles O will need for his permanent chair. At this point, we don't think he will need any head support, but he'll definitely need some type of trunk support to keep him from slipping into his gangsta lean. He would just need the trunk support until he is able to build up enough trunk strength to be able to sit up on his own. 

Other updates:

• Otis has gone through quite a growth spurt lately! He is long and lean now, at 32-33 pounds and about 38 inches tall. 
• Otis has really been trying to use his right arm lately, and will sometimes reach and grasp for toys with BOTH hands!
• Although we still can't get him to actually look down at it, O discovered his belly button the other day. The look on his face was priceless.
• He understands the word "push!" and will push his heels down when you say it to him. Well...sometimes. When he feels like it. Last week, I was down on the floor with him. He was on his back with his knees up, feet planted on the ground. When I told him to "push, push!" he pushed his feet into the ground and scooted a few inches on his back. He will also try to push his feet down into the ground and into standing if you tell him to push while holding him upright. Go, Otis!
• We are loving the cool fall weather...partly because it means that it's now snuggly pajama season for Otis. 
• In honor of Daddy's 36th birthday on Monday, Otis gave him the gift of a full night's sleep on Sunday! The 3 of us spent a nice day together that included lunch at Free State and a walk in the sunshine downtown, and ended with some Sam Smith Oatmeal Stout and a few hands of gin rummy while Otis supervised from his stander. That's right. We Reeds party HARD. 
• Otis has been titrating up on a new (to him) drug called Felbatol (felbamate) for the past month or so. While we saw better seizure control with this drug than we've seen with any of the others, it also came with some pretty significant side effects:  insomnia for the first week on the drug and again with each dose increase; loss of appetite, the timing of which was just awful, since he had already begun to exercise his newly discovered 2-year-old will by REFUSING to eat; and BIG behavioral changes:  our happy chirpy boy disappeared for awhile as huge mood swings set in. He would go from being quiet and lethargic to loud and angry (mostly at meal times) several times throughout the day. It was really hard to see him so unhappy, and we had to question whether or not we should stop the drug and watch his seizures jump up again, or see it through to see if the mood swings would level out once he became more accustomed to the drug. We held off on the dose increases while we waited for things to settle down, which they eventually did. Although he's not quite back to his normal, things are certainly much improved, and we are seeing our happy, playful little boy again. Dr. A was agreeable to our request to back off a bit and go more slowly with the remaining increases toward O's "therapeutic" dose. 
• O has had some REALLY good nights of sleep lately--a couple seizure-free all-nighters!--peppered with other nights where he's just completely wired and ready to party...all night long. Seizure control has been much better at night than its ever been, but we're beginning to see the numbers creep up during the day, and his first-thing-in-the-morning cluster is still pretty big and bad no matter what kind of night he's had leading up to it.  
• Since Otis has pretty much reached the end of the antieptileptic drug line, we have begun to make plans to make a trip for a 3rd opinion regarding the surgical option. St. Louis Children's has great neurology and neurosurgery programs, and--bonus!--is really close to home, so right now we're leaning toward taking Otis there to be evaluated. We are also doing lots of homework and researching alternative therapies for intractable pediatric epilepsy.
• O's rehab doctor gave him a referral to the Rehab Institute of Kansas City. We'll take him in next Tuesday for a 3-hour evaluation, after which Daddy will bring him in for outpatient day therapy (physical, occupational, speech) 3 times per week, in addition to his tiny-K therapy and work/play with Daddy at home. We are super excited that we will be able to do this, and that there will be no out-of-pocket costs to us for the rest of the year since we've met our insurance deductibles (yay!). We're also really excited for opportunities to participate in group-type therapy at RIKC.
• Otis is on the waiting list to begin Educare Preschool at KU next fall. We had a great meeting recently with the coordinator there, and it's sounding likely that there will be an opening for Otis next fall. It's a really awesome program in a great small setting, AND it's on the KU campus where Mommy works!
• We have decided to wait until March to put our house on the market. With everything else that's been going on, and with all of the other decisions we're facing right now, it is such a relief to be able to let this one go for awhile. Plus, it buys us more time to clear out much more of the STUFF we've managed to accumulate over the years, and we get to spend one more cozy winter together in our house. 
• ZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzzz.....