I figured the easiest way to give an update is to pick up where I left off, which was right after Mira's birthday. We actually had a larger birthday party for Mira in the park, a few days after her actual birthday. Turned out to be a beautiful day and Mira managed to take some nibbles of of a cupcake. Thanks to everyone for all of the nice gifts, cards, flowers, and balloons. I know Mira really enjoyed having everyone there.
The day after (or the day before I don't remember - again the baby thing as my default) we went to a 4th of July celebration for the city (called Villagefest) where it turned out to be another perfect day out weather wise. Who expected back to back days in the beginning of July at 82 degrees?! I just remember sweating bullets last year this same time at Villagefest and it being nearly 100. Anyway, Eli had a blast that day for two reasons. First, he was able to indulge in one of his new found interests, which is anything and everything to do with the military, particularly guns. The police department has a display of assault rifles, handguns, masks, and other weaponry for kids of all ages to enjoy, I guess.
The annual Village fest 4th of July celebration wouldn't be complete for Eli though, without running into his old pal Sluggerrr. Eli somehow new that this bitter rivalry would come to a head that day, so he opted to wear his Cardinal's shirt, just to taunt Sluggerrr if he saw him. The showdown finally took place about high noon, where Eli caught him out of the corner of his eye. He first threatened to kick him, but Sluggerrr stood tall, picked Eli up and gave him a big bear hug. Eli immediately took off running after Sluggerrr got the best of him. Final score: Sluggerrr 2, Eli 1.The following week we headed to the air show in nearby Gardner, Kansas, where Jonah got his first taste of real summer heat. We didn't last long and tried to stay in the shade (which often meant under the shadow of the Chinook helicopter propeller blades) but survived. Again, Eli whose love these days of weaponry, old cars, and military vehicles knows no boundaries, exclaimed "this is my luckiest day of war" as we passed through the gate. He saw an old 1932 Roadster, a gigantic Chinook helicopter, and a plane armed with guns, all in the first 30 seconds.
Last week was fairly uneventful, although we were dealing with one of Mira's hunger strikes most of the week. She went a couple days and we realized that she was probably constipated. At the same time, she was battling more phlegm issues off and on for a few days during the week. I woke up one morning, started preparing a bottle for her and heard her making some funny sounds. Sarah and I both ran in to find her vomiting everywhere, probably due to the mucus and being so upset. It's funny to know your child's noises and mannerisms so well that you can immediately sense when something is not right. Mira makes a lot of noises and sounds throughout the day, but we know when the sound she makes is not right. Just tonight she let out this weird cry, again we both rushed into her room to find her with her binky caught in her mouth. Time to be done with the binky at night. Most of the time when we hear a strange cry and she has her leg or arm wedged between the rails in her crib. Time to modify her bed.
Now that she is more active, we are finding it really difficult to find places for her to roll around on the floor. Our house is only so big (yes - a whopping 900 square feet) and she rolls into everything. She often gets stuck in weird positions - between the couch and chair, getting tangled in her blanket, etc.
So as it goes, we were getting into a little bit of a rhythm this past week, until we had Mira's EEG last Thursday. The expectation for an EEG is that you keep her up as late as possible (Children's Mercy says to keep her up until midnight, which is impossible, we rarely get to 10:00pm) and then wake her up at 4:00am (again, impossible if we can get her up and keep her up earlier than 5:00am) so that she is sleep deprived (a scenario we are all experiencing at the moment) for the EEG itself and will fall asleep for the beginning of it. This EEG, being her 12th or so, we were actually able to keep to that schedule fairly well and Mira turned out to be a real trooper for the whole thing. I ended up staying with her at CMH until our neurologist appointment afterwards, while Sarah stayed home with the baby. The EEG was scheduled for 7:30am, which went fine, but getting into neurology is a whole other ballgame. We were almost an hour late by the time we were sitting down with her neurologist, which seems to be the norm with that department. Great people, great doctors and nurses - just never on schedule.
Despite having a seizure free period of nearly six months, Mira's EEG hasn't changed much since last November. I don't quite understand the specifics of her EEG (ironically this is the first time someone actually tried to explain it to us) other than she is having frequent spiking and bursts, which interrupts her ability to focus and learn though we have seen considerable progress since she started on the Lyrica. Why does her EEG look like this is the million dollar question. Mira did manage to have one head drop toward the end of the EEG, which they caught on tape. Unfortunately, it doesn't offer any insight as to why - it's just that she has the potential for seizures all the time, but we are only seeing a fraction of them on the surface.
We discussed genetics again and believe we have exhausted all of the testing at this point in time. There is one final test to perform for now, which is a mosaicism of idic15, which would completely rule out any sort of idic15-related scenario for her. A mosaicism of idic15, as opposed to the 'typical' inverted or duplication of chromosome 15 is extremely unlikely, occurring in about 1:100,000 births. Children with a mosaicism (which is merely a mutation, inversion, or duplication occurring in a small percentage of cells as opposed to every cell in the body) are usually much more high functioning than kids with the 'typical' version of the genetic disorder. Our neuro thinks it would be very unlikely, nonetheless, he thinks it's a good idea to finish out the testing. We basically are banking her DNA for future testing and should something come up that they believe she should be tested for in the future but for now, we are done.
As far as seizures are going, Mira is doing about the same. We are still seeing several dozen head drops a day, but nothing more major than those small myoclonics. Our neuro is very hesitant to go any higher on the Lyrica, based on how little is known about this kind of use of the drug. Possibly, Lyrica has lost some of its efficacy, which is not uncommon with AEDs. Our plan is a conservative one regarding her meds. For now we will drop Mira back down to 50mg daily of lyrica and add a small dosage of Depakote in about two weeks. Depakote is in the same family of GABA-related AEDs as Lyrica, so the theory is that it will work in conjunction with the Lyrica to help combat the head drops. It's all trial and error with the medications and it will always continue to be at this point. We will only try the Depakote for 6 weeks unless she is not tolerating it well or it stops her seizures.
Despite the seizures and the occasional hunger strikes, Mira is doing very well overall. Thanks to everyone for your continued support, gifts, and prayers.