Tuesday, June 29, 2010

Mira Turns Five!

Well, where to begin. First the big news. Mira turned 5 yesterday! I cannot believe she is already celebrating her 5th birthday, when I swear it was yesterday she just turned 4. We celebrated her birthday at Avelluto’s for dinner, went swimming, and had pink frosted cupcakes for dessert. Mira enjoyed a couple of scoops of pink frosting after we opened presents, then the sugar rush ensued. I think she would have eaten the entire tub of frosting had we let her – it was a big hit. Thanks to everyone for all of the cards and gifts!

Things have finally settled down over the past few months, after having some medication and irritability struggles with Mira in March and April. Over the course of a few months, Mira’s demeanor had become progressively worse – more seizures, more crying, more fussiness, more twitching, and just some all around rough times with her around the beginning of May. She had a couple of longer, intense seizures during this stretch as well, which we haven’t seen in a while. It basically came down to her needing an increase in her Lyrica dosage, which we ultimately did and things have gotten back on track. It’s frankly so difficult to tell what is happening with her and ultimately, it is a guessing game most of the time. We have attributed this latest bout to Lyrica. Something in that medication works for her and we need to just make sure we are at a therapeutic dosage for her all the time. She is now holding on a steady dosage, along with clorzaepate.

We did get some unsettling news about a month ago that Mira’s primary neurologist is leaving Children’s Mercy. After 3+ years as her only neurologist, we are very saddened to see him go. We were able to schedule a final appointment with him next week before he departs to the east coast for good, then we begin a new search for someone else in the clinic. Over the years, Mira has seen three other neuros in clinic (in KC and Saint Louis) and I have corresponded with countless other neurologists, doctors, nutritionists, geneticists, parents, theorists, and quacks alike in our search for help and guidance. He has always been on target with Mira and very understanding. We will miss him.

Since our last post, ironically, we are no further along in obtaining Mira’s new mobility system. The combination of endless insurance red tape and ongoing seating clinic miscommunication equals frustration for us. While Mira continues to kick apart (literally) the connections on her KidCart, we continue to prod the seating clinic and insurance company to ensure the process is moving forward. It is painful at times, but we are frankly at the mercy of those who are pushing (albiet very, very slowly) this funding paper trail around. We did start this back in early January…….and now it’s almost July.

In terms of therapy, Mira is doing excellent. She is still getting weekly OT, PT, swimming, feeding, and we are still doing hippotherapy (weather permitting) nearly every week. Mira has made great strides over the past six months in weight bearing on her legs. During some of her therapy sessions, her therapist(s) have been getting her in a gait trainer (which Mira loves) and having her get used to the idea of putting pressure through her legs while on a very slow-moving treadmill. She is also starting to not only grasp her bottles, but able to hold it in place during drinking! Most of the time, she is grabbing at the bottle and will hold the bottle (predominantly with her right hand) and we have been letting her drink it unassisted! She is doing so well.

We invested in a pool pass this year and are getting her in the pool as much as we can, since it is always a hit with her. She LOVES being in the pool – lots of smiles, lots of splashing, and it wears her out. Jonah on the other hand HATES the water – bath time is terrible and he despises the pool. He is slowly coming around thanks to Mira’s ecstatic nature in the pool. Eli is taking lessons again this year and is increasingly confident in the water. He has made great strides over the past year and is really enjoying the water slides at all the pools. He now is eyeing the diving boards.

We have been getting some help a few days a week for the summer from a graduate student who works at Mira’s school. She is fantastic with Mira, very enthusiastic, and we are extremely thankful to have the help. We wish we could pay her more!

We have taken a few weekend trips already this summer, to Saint Louis and to Omaha, and are tentatively planning a few more trips toward the end of the summer, but right now, it is good to just take a break. With all of the major renovation and addition work on the house out of the way, we are just in painting and trim work mode. We have a roll-off scheduled for delivery (our third one for this project) on Friday, mainly to clean out and throw away all of the leftover construction material and yard debris. We lost yet ANOTHER tree this year, after a 50 foot limb broke off and came crashing down in our front yard, destroying part of the park fence, gouging the yard, and taking out a couple of shrubs. Fortunately, it didn’t fall on the house, but cost us a small fortune to have it removed.

On a high note, Sarah and I celebrated our 10 year wedding anniversary this past month. We were able to have a small getaway weekend to celebrate and had dinner at the best restaurant in the world (well, at least in Kansas City and it is our favorite) called Le Fou Frog. In the 12+ years we have been going there, they have never disappointed and the mussels and lobster tails WILL make you drool, guaranteed. Thanks Auntie Aura for watching the kids – we are forever in your debt.

Speaking of Sarah – she is becoming quite the photographer. She took most of these pictures. The close-ups of Mira with her new dress are stunning at high-res. Kudos to my wonderful wife, who is really taking some great shots. The video at the end isn’t very exciting (I did it), but gives you an idea of what Mira does most of the time in her chair. Notice the double-banding of her toy, so there is NO WAY for her to pull it off her tray and shove it on the floor. Now she pulls the entire tray with it, so it all comes crashing down togehter on the hardwoods, making the most awful noise in the world. Needless to say, Mira LOVES that toy - thanks to Erin for donating Fletcher’s old one – that was very thoughtful and we appreciate it very much!

We are looking forward to a quieter summer than last year and now that we have more room, please visit!

















Monday, March 29, 2010

Mira's Toy


Mira broke her third (and last) TOMY piano toy. We have been trying to find one on eBay and just missed the bidding for one yesterday. We are trying to find another one ANYWHERE. If anyone knows where we can get one, please let us know. It is a TOMY brand, sometimes called a globe toy, bulb toy, piano toy, or play by light toy. It was made in 1999. It is one of the few toys that Mira consistently interacts with. They are really hard to find now but if any parent is willing to part with one, we will buy it!

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 (http://www.snugseat.com).

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!