It appears that it has been a very long time since I gave a real update on Ari. I can tell, because whenever I have posted a photo or a video featuring her, friends and followers seem to be surprised at her progress. There is so much to say, so it’s hard to know where to start.
I’ll start with the photos. I took these pictures about a week ago when Ari and I went to Cardon’s Children’s Medical Center for an elective Botox procedure on her right arm and hand. Her right arm has always been really tight and weak, but it has gotten worse over time, so I decided to give her a poor arm a short break (3-5 months) from the constant tightness and cramping by getting Botox injections in her right bicep, forearm, and thumb. It is also our chance to stretch her without causing her pain and build strength in her arm before the tightness regains control. It worked, and while she needs to work a lot harder to use her right hand as a helper, such as with holding on to grab bars in the restroom, it is much looser and more comfortable for her. She did not have any complications in the hospital, and she actually really enjoyed her short three hour visit. She became a fast favorite of her nurses and doctors. She listened to Frozen songs on their paging devices and both fell asleep and awoke from anesthesia with a smile.
Ari has not had any other hospitalizations, and we are very thankful for that. That isn’t to say that she has not had seizures though. No, it isn’t saying that at all. Ari’s seizures have noticeably increased in frequency. At one point, Ari was only having one seizure per year, but so far, this year she has already had six or seven. The past two seizures have both been within nineteen days of each other. The most recent one was this afternoon. While we still don’t know for sure any triggers, the seizures have gotten more predictable. Lately, they seem to occur when she is asleep. They used to happen at any random hour of the day, but recently that hasn’t been the case. This isn’t good. She usually lets out some small cry for help right before she starts seizing. This has alerted me in another room once, and every other time, it has awoken Bella. This is good. Sometimes, Jake and I think that she has seizures more often when she’s hot. They have historically come on more during the summer months or when she has a fever. Her room here, despite the giant fan overhead and the $705 electric bill this month, is still warm. I had our A/C guy look at the ducting, and he says that the route to that room is pretty hopeless, so I’m having him reroute that piece. But honestly, we’re still just shooting in the dark.
Ari’s gross motor progress hasn’t been great, despite her motivation to take more steps in her gait trainer and her Upsee. Her legs are much weaker than prior to her surgery in 2013, and even with all her efforts and many hours in physical therapy, we have not been able to get back what strength she had before. She always is her strongest during and right after her summer Conductive Ed program with Gaitway. I don’t know where she would be without her summer Conductive Ed. But the fact of the matter is, she is much heavier now than she was even a few years ago and as much as I find her 52 lbs. difficult to carry around, she is having to deal with that much more than I. Weaker legs + a heavier body don’t make for a great combo… especially when you’re seven years old and only want to play. I mean, she will work for Frozen. Thank goodness for Frozen.
Her left hip is bad now too. I swear it’s because of the Rhizotomy, and I can’t be told otherwise. Her hip had very nominal dysplasia in 2013, but in 2014, she has 50% dysplasia on the left. We have a hip surgery in her future, and it’s only a matter of time, but I’m trying to postpone it until she’s more or less done growing. This will reduce the chances of her having to repeat it due to changes from growth. No one wants hip surgery. Let alone twice. There will be weeping and gnashing of teeth on the day that we are told that she needs it right away.
That basically covers her physical health. Now, academically and cognitively – that is where we’re making the big gains. I don’t even know where to start on this topic. Ari is reading long lists of sight words. On a list of 40 sight words, she can pick the word I say from a field of 6 with about 90% accuracy. I had to buy more storage on my iPhone to accommodate all the videos (proof) I have of her doing this. She can count to ten and count items. She is learning to verbally say so many more words. She is motivated to speak so much more every year that she is in school (fully mainstreamed) than she ever was at home. She knows all of her letters, upper and lower case and the sounds they make. She sounds out words verbally when she is reading a word she doesn’t have memorized. She got an 80% on her last AR reading comprehension test (modified to 2 response multiple choice). She can handwrite her first and last name all by herself (with light support on her wrist to keep it on the table). With the same minimal support, she has hand copied a complete sentence on her own without anyone assisting her or telling her what to write. She has recently begun to take off with using her new iPad Touch Chat augmentative communication device to speak. She actually initiates conversations on it and replies to questions using it without needing to be prompted. She is beginning to type words and sentences on her iPad keyboard. As you might guess, I am thrilled with her progress! I feel like I am getting to know her a little more all the time as her thoughts are coming out through her newfound language. Who knew she loved dried cranberries so much? She is tickled that she can express that want to me and for it to be reciprocated with her favorite snack!
With all of Ari’s new gains and continued struggles and years passed, a mother’s heart will still never lose the hope that she will one day see a miracle. And while everyday miracles are beautiful and celebrated in our world, I’m talking a true blow-your-mind miracle. The kind that makes headlines and restores people’s faith in God. And I know that’s not really the right thing to say. The right thing to say is that I wouldn’t change a thing about Ari even if I could. But authenticity really pulls rank in my book, and I hardly ever say the right thing anyway. I say the honest thing. But I’m just like every other loving parent that ever lived. I don’t ask for any more or any less. I want my child to have every opportunity, every good experience, every joyful or meaningful moment that the human existence can offer. And if not all that, then I at least want her to have a fair shot at it. She wants that too. Trust me, yes she does. But either way, we will be happy. As long as she is here with us and she still smiles her gorgeous smile at me every day and tells me “I luv-a Mom”, my heart will be full and filled with gratitude at the miracle that she already is.
