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!
