Sunday, January 24, 2010

Finally.......An Update!

It’s official. I have personally adopted September as ‘Merry-Go-Round Month’. I think it all started a few years ago, when Eli was in full Preschool mode and Mira was in full-therapy mode. And Jonah makes three (although technically not in school – three just adds to the daily chaos).

The first week in September starts off fun and exciting, with the start of school of course - new beginnings, new friends, and school pictures, much like the euphoria you feel of first getting on a merry-go-round. Lights flashing, music blaring, the ride slowly starts. The second week in September is much like the first, quickly accelerating – twice as fast as the first. Cub Scout meetings. Popcorn sales. IEP meetings. Spinning. Ups and downs. Up and downs. Toward the middle of the ride, you realize the cuddly blue dolphin you chose to sit on is loose from its pole on the ride. It squeaks a little (much like a dolphin would squeak in real life I suppose) but this squeak sounds desperate and maniacal. Things are speeding up and you realize upon further inspection that the dolphin is missing a flipper and in its place, painted over duct tape. The ride spins faster and faster. You are too distracted to actually enjoy the ride, focusing on the funnel cake stands spinning wildly around you. You find a focal point – perhaps the floor. The mirrored ceiling, the child barfing next to you and the parent trying to get the operator’s attention in a desperate attempt to bring the ride to a screeching halt. The dolphin keeps squeaking. Now in full motion, the pinnacle of the ride hits you like a lead balloon. You are nauseous, breathing heavy, over stimulated by noise, red lights, green lights, laughing clowns and scary unbalanced MIDI music. The ride starts to decelerate and it’s not soon enough. You start mapping your exit strategy during this winding down phase, gradually distancing yourself from the squeaking dolphin, which has caused your ears to seemingly bleed. Thank God, it’s the end of the ride and the end of September. The winding down of pancake breakfasts, wood floor deliveries, fundraisers, Boy Scout campouts, drywall contractors, and medication trials is officially here. It’s October. Finally.

Then, procrastination sets in. (I started this post in October. It’s now January 2010.) So, so bad. I am still spinning from September.

So where to begin. In early September, Mira had a routine neurology visit, which went as expected, I suppose. Every time Sarah and I go in with a certain degree of expectation for one of Mira’s neuro appointments, we walk out an hour later (or 3 hours later in some cases) wondering how we were spun 90 degrees from the mindset with which we had expected to leave. Sarah and I call it the ‘90 degree effect’. One would think we would have learned by now. The main topic of discussion this visit was Mira’s irritability. The past few months have been rough with her. We tried Banzel briefly, which seemed to help some initially, but quickly turned sour after a week or so. She was really cranky and having lots of seizures. We gave it a few weeks, but it seemed to noticeably cause more harm than good after a week. Strike one.

One of her neuro’s other suggestions to combat the irritability factor was to try Risperdal (risperidone) which is an antipsychotic sometimes used to treat schizophrenia. Knowing it would do nothing to stop her seizures; we tried it as a potential relief from her seemingly constant uncomfortable disposition. After a few weeks of that, we abandoned it. We were told it either works or it doesn’t for her. It didn’t. Strike two. Then we tried Carbatrol (carbamazepine), yet another antiepileptic. Still very cranky and no change in seizure activity. Strike three to finish out 2009. Our batting average with meds this year is about .125, and that’s being generous.

In mid-December, we tried Clorazepate, (in the benzodiazepine family of drugs, i.e. sedating similarly to valium) which she is currently taking. We are trying it mainly to aid in resolving her irritability and if it were to decrease her seizures, all the better. We started at a lower dosage and saw some modest improvement, then increased her dosage several weeks later, which is where she stands now. She is still having seizures, but they are far less frequent and her irritability has decreased considerably since increasing her dosage. All in all, we feel this is the best we could hope for right now, so we aren’t rocking the boat. We’re trying to find the elusive sweet spot in between overly medicated/non-functioning and extremely irritable/non-functioning; finding that balance is difficult.

Nothing else significant surfaced in her appointment in September. We talked genetics and testing for a bit, but there are several fundamental issues that come up with this discussion every time. First, genetics is moving at such an incredible pace that it is difficult to keep up with the constant gene deletion and mutation discoveries that are coming to light. Literally, hundreds of genetic anomalies are being discovered every month. Second, there are so many genetic markers associated with particular developmental and neurological issues; you could not possibly test for every one relevant to Mira’s situation. CMH is in the process of implementing some new genetic technology screens (one in particular called a ‘Whole Genome Exon Sequencing’ screen) will be available some time this year and Mira will be one of the first kids tested at the hospital. It is supposed to scan for an exponentially higher number of mutations and deletions than even 2 years ago.

The first week in October brought us a stomach bug too. Mira caught it first, threw up in her bed numerous times, and quickly passed it on to Jonah. They passed it on to me, where I went home one day after hugging the bathroom sink at work a few times. Eventually it passed. Otherwise we’ve just been weathering winter’s standard onslaught of various cold virus’ and mild fevers, with the most recent round of congestion, phlegm and breathing treatments (for Jonah) ending two weeks ago with everyone thankfully turning a corner. We’re hunkering down and hoping to avoid any more major illnesses. Fingers crossed!

November and December simply flew by. We spent Thanksgiving with the Flora’s, who were just getting settled in after their recent move to Omaha. I think we will be being seeing more of each other from now on, since we are only 3 hours away and not 6 – it is fantastic to be that much closer! Mira loved hanging out at their new house, since they have acres of room (all carpeted so she Mira can roll around) downstairs in their entertainment room.

December was a big month for Jonah, who officially started walking around Christmas. He had been scooting around, always pushing with his right arm, for months. I don’t think he was interested in walking for a long time for two reasons. First, he was faster and more efficient at just scooting – lightning fast and second, he realized that if he just waits or screams it out long enough, someone will pick him up and just carry him ALL THE TIME! He had perfected the art of getting people to pick him up and still takes full advantage of it when he is tired. A month later, he is cruising around the house and quickly getting into everything.

Christmas was very low key this year, perhaps due to the fact that we had 18 inches of snow dumped on us here in Kansas City and constant single digit temperatures for nearly three weeks. With Christmas break and the weather, I think Eli and Mira were home from school and therapy for a total of 2 days during that time. Lots of school cancellations and trying to find things to do indoors. In early January, the temperatures came back up we all got back into the full swing of 2010.

Mira’s diet has shifted to pretty much all liquid all the time, with the exception of feeding therapy and the occasional applesauce, where her therapist can usually get her to eat some solids. Otherwise, she is pretty content and her diet of combination of warm soy and rice milk, mixed with protein powder and supplements, topped off with a Pediasure (sometimes two) at some point during the day. We have found that since abandoning cow’s milk all together, her skin has cleared up dramatically. We aren’t sure whether or not she has an allergic reaction with dairy or cow’s milk in particular, but she doesn’t seem to miss it and her skin is definitely better. She’s also taking Zyrtec everyday too, so that may be helping her eczema as well.

As always, every prepared drink has to be the right temperature or she will reject it. Mira has now perfected the art of taste-testing each bottle when you put it to her lips. She chews on the end for a few seconds, to get a little but in her mouth, and then decides whether or not it meets her very specific temperature requirements. Warm, but not hot. Never cold or she will spit it out with vigor and push the bottle right out of her face. She knows what she likes.

Sleep has been much better, although far from perfect. Mira had some weeks back in November and December where we were using trazodone practically every night, but she has settled back into her routine of having one rough night every few weeks. We aren’t exactly sure how much she is awake in the middle of the night; some nights we can hear making noise for hours and other nights not so much as a peep. We gave up on using melatonin for good, finding that the trazodone is much more effective for her. The last few weeks Mira has been getting up consistently about midnight or 1:00am, taking a bottle and slowly going back to sleep, after an hour of bouncing around in her bed.

This past week we started the wheels in motion (no pun intended) to get Mira a new chair system. Her KidCart has worked great for the past two years, but unfortunately, she is out growing it. The system she has now works well, since it is so flexible. It is a three-piece system: a detachable chair that sets in both a high-low base to use around the house, as well as a separate stroller base to everywhere else. Happily, her school has a spare high-low base for her to use during her preschool time, enabling her to be face to face with her peers. We are actively searching for a similar system, but they are very expensive. The process to get her KidCart several years ago took about 10 months from start to finish. We may be looking at a similar timeframe to get her a new chair, thus we are starting early. One of the systems we are looking at is the Panda Futura (

Further down the road (yet another bad pun) we are looking at conversion options for the van. One approach would be to convert our existing Odyssey, which is already 3 years old. The other option would be buying a new van that is already been converted. Sarah started doing all the research on Mira’s new chair and the van options this past week, so we are still becoming educated, exploring options and costs.

We are officially moved into the addition, despite being only 80% complete. There is a laundry list of ongoing construction tasks that still need to be completed, but we are trying to prioritize what happens next. Anyone who wants to help me do some demolition work, I will take you up on the offer in about 2 seconds. We will be getting a roll-off in about 2 or 3 weeks to start ‘Phase 2’, the existing part of the house. The plan is to demo our old kitchen and turn it into a laundry room, then demo the existing bathroom, making it more accessible and bringing the 1970’s finishes up to date. Finally, the existing hardwoods will be refinished to match the new addition. We are still aiming to be done with the entire project by June 1st, which will be one full year from when we started. It’s been a long haul, but will all be worth it once we finish.

Thanks to everyone for all of the wonderful Christmas gifts, thoughts, and prayers for our family. Hope to see more of everyone in 2010!


Christina said...

Hi Marc,
So glad to have an update-though of course I keep up with you on the IS Yahoo board. Love the pictures!
It's so true about the genetics test-Kira's most recent mircoarray detected additional material on her 20th chromosome, though no one can tell us what, if anything, that means yet.
Kira is only 2, but from your blog and videos I think she has a lot in common with Mira, besides their names being similar. Thanks for posting your experiences. I feel like it gives us a view into what we need to expect from Kira's future a couple years from now. Sending healthy thoughts your way,

Carolina said...

I'm curious about the details of Mira's diet. Ansel eats only Pediasure Enteral (less sugar than regular) by bottle, but we keep wondering if there's a more naturally nutritious way to get his calories and such. What kind of protein powder, supplements? Did your feeding team help come up with it?

The drug/functioning balance is absolutely what it's all about. You guys are brave to keep trying. At the moment we seem to have found a "normal", so it makes us nervous to try new ones that may turn whatever universe in which this is normal upside-down.

Beautiful, beautiful addition. Still envious of the extra space.

JSmith5780 said...

Hey Marc- it's great to see an update. I am happy to hear Mira's finding at least a little success with the clorazepate.

Kids all look great! Everyone is getting so big.

Anonymous said...

I came here in a crazy round a bout way and love your blog and I am usually just a quiet blog lurker but I had to say your daughter Mira is absolutely gorgeous, absolutely.

The_Wilsons said...

I am finally catching up on blogs. I am happy to hear all this info but now I am still out of date since it is now March 16! I am praying for you all. Love the pictures.