Sunday, February 12, 2017

A Funeral, A Birthday, 2 IEPs, and Ophthalmology

I truly don't think the last 10 days could have possibly been any busier. My head is still spinning from the non-stop, tumultuous few weeks we have been experiencing here. Unfortunately, it all started off with the passing of Sarah's uncle Jamie, who was a huge part of Sarah's life growing up here in Kansas City. He was an incredibly thoughtful person, making you feel involved and important with every encounter you had with him. He was engaging and sincere - he will be missed dearly by everyone in our family.

With Jamie's passing and the funeral mid-week, our days and evenings were occupied, gathering pictures and exchanging stories with relatives that managed to make it in town. On Wednesday, we attended the funeral and luncheon afterward, which trickled into the late afternoon, eventually leading into Eli and I spending the evening at his 9th grade enrollment activities, at his future high school. I cannot believe I am going to have a high school age child in another 6 months. Eli had an equally busy week, with mid-week enrollment choices and then celebrating his 14th birthday tonight! He has been saving up the money to build his own computer, researching and buying the parts over the past 6 months and with the birthday presents he received tonight, his build is nearly complete.
Prior to the funeral, we had 2 IEPs, sandwiching the weekend - one on Friday for Mira and another on Monday for Jonah. Both were fairly uneventful and there weren't a whole lot of changes for either one of them from last year. However, we did discuss Mira's diet some, coming to the conclusion that she should have the opportunity to try some of the school lunch offerings. The cafeteria staff has to puree her foods, as they do with some of the other students in her class, but it would give her the chance to eat with other kids in the cafeteria. This past week they started initiating this plan and Mira has been able to sample a variety of different foods, including broccoli, mashed potatoes, and a few desserts. Her teachers and paras noted that she was very enthusiastic about it all too. We have had our reservations in the past of pureed foods, as she used to gag on some of foods we offered, so we eased up years ago and kept her primarily on a bottle diet. Speaking of which, Mira seems to be gaining some weight since we upped her calorie intake. I can't give an exact amount, but it is visible in her legs and arms - she is looking fuller and certainly feels heavier when we are transferring her. Yes, not a very clinical analysis, but I can assure you, she has put on weight, which is great.

To finish off our insanely busy week, we had an ophthalmology appointment for Mira on Friday morning. Right after getting settled into the exam room, Mira had a huge tonic-clonic seizure, knocking the bottle I was giving her clear across the room, dousing the nurse with a spray of rice milk and protein powder. Mira was post-ictal during the exam, which made it a little challenging for the ophthalmologist to get an updated script for her. It took us months for us to get an appointment on the books, thus it was all just unfortunate timing that Mira has an enormous seizure right then. By the end of the exam, Mira was still having some dystonia and odd movements, but they were able to give us an update on her vision. Basically, her astigmatism is slightly worse and her vision overall is slightly worse, but perhaps not enough to warrant getting a new pair of glasses. Based on the discussion we had the week before with the vision specialist and our most recent conversation with the ophthalmologist on Friday, the recommendation was for Mira to have an ERG done, as she has not had one for 8 or 9 years, when she was being monitored in Saint Louis for retinal toxicity while she was taking Vigabatrin. The feeling was that is would be a good idea now to monitor her retinal activity and for us to understand where she is at in terms of her overall vision picture.
Mira had a rough day after leaving ophthalmology - she continued to very lethargic and altered, having an afternoon of dystonic movements and small seizures. We ended up keeping her home the rest of the day and ultimately, we had to intervene with Diastat to try and break the cycle of seizure activity by mid-afternoon. She has had many of these episodes over the years, with a spike of activity over the past 2 years. Fortunately, the dystonia never seems to last more than 24 hours and Mira quickly rebounds. She was a little lethargic on Saturday but we had spectacular weather (60 degrees, breezy, and sunny) so Mira and I spent a lot of time outdoors going on walks. We did the same today, although it was colder and overcast. Mira didn't seem to mind. 
Jonah was battling a fever and cold most of the week, missing school Thursday and Friday, thus we ended up taking him to Mira's appointment with us. His fever broke on Saturday and today he is back to his old self. I could tell you that the next two weeks are going to be easier, but I would be lying. I have to head to New Brunswick this week and Virginia the week after, which leaves Sarah to hold down the fort while I'm gone. 

Thursday, February 2, 2017

Vision Specialist

Today we met with ophthalmologist expert here in Kansas, who specializes in children with significant visual issues, particularly  Cortical Visual Impairment (CVI).  CVI is basically a disconnect between what the eye(s) see and the brain interprets - it is more of a neurological impairment than an actual visual one. Mira was diagnosed with CVI when she was very young and ended up receiving services through CCVI (Children's Center for the Visually Impaired) here in Kansas City, until she aged out of the system and entered the school district. Because of her constant neurological flux (hypsarrhythmia) it is extremely difficult for Mira to focus on much, if anything, for an extended period of time. Coupled with her extreme myopia, her actual visual processing ability is speculative at best. We do know that she can focus on her toy - the bright lights and motion are able to capture her attention, when she is in the right mood. The vision therapist she saw today was able to look at Mira's background and history to see if she could benefit from other alternative therapy approaches, so that Mira can reach her full visual potential. There wasn't any significant revelations during the appointment, however, it was great to hear someone else's expertise on how we might be able to help further her skills. Mira was able to maintain her composure throughout most of the appointment, although is slowly mastering her slouch in her new chair. An hour into the meeting, she had pretty much checked out and was ready to move on. We have an ophthalmology appointment next week, which will be interesting to find out if Mira's vision has changed at all over the last 12 months.