But this time, they weren't budging. I spoke briefly to AJ's therapists, and went in a bit more nervous than I thought I should be. I took the pages upon pages of each denial letter, grabbed a highlighter and pen and picked them apart. I rehearsed as much as I could (other drivers on my route to and from AJ's school probably think I am the weirdest person alive talking to myself).The judge called and clarified this hearing was for two therapies. Yes. We started with PT, where I went on and on about how he needs it, and although I try my hardest, I am indeed, not a professional physical therapist. Mind you, the judge states she did not have a copy of the physical therapy denial letter in his file. Well, that's nice.
We moved on to speech and feeding. Now that I think about it, I don't think I touched on feeding nearly enough. I was stuck in the speech rut. Especially since this goes back to when AJ first arrived home. All in all the conversation, er rather me blabbering on for 45 minutes.
In the end, I am told that the petition AKA decision will be given by mid-September. Well, that complete defeats the entire purpose of the hearing. AJ was denied services at a very, very crucial time. The plan was to prepare him for the upcoming school year. The tentative plan is for AJ to attend kindergarten till early afternoon each day, every day. There is no way he will be able to function for multiple therapies per week after school.
Instead, he has regressed. He is tripping and falling constantly, the tightness in his leg has traveled back up to his arm and shoulder again. His UCB (orthotic foot inserts) are too small, so in addition to getting him in for the night splint, he now needs new UCB's. When calling to make the appointment, I learned his orthotist is out on medical leave (you learn quickly not to go to just anyone to fit your child for orthotics). The soonest we could get in is mid-August, which means we'll be lucky if we have orthotics by September. Anyone want to know what his leg/foot/arm/shoulder are going to look like if we wait that long? I don't.
In the meantime, I got creative and used my hairdryer to heat the plastic of his UCB and then stretched it out. They use this process at the orthotic office, so I thought my ghetto attempt might work, minus the industrial heater and professional tools and, er gloves (OUCH!) they use. It worked. And I'll keep doing it until we get new ones.
As far as therapy goes, I'm not sure where we are headed. The plan was to only continue on with feeding therapy 1x week once school begins. While I know he won't function well after school if we try the same therapy frequency as last year, I'm not sure what is too much, but I know what is too little. Since the appeal is virtually useless in relation to summer services, they might, just might approved a set number of therapy sessions for the future. And we'd be stupid to not utilize those sessions. We have a lot of thinking to do.
~AJ has another ear canal infection. Yes, my worst fear for summer has happened-again. On Friday I decided to take him to urgent care after pool therapy. The kid loves pool therapy and his ears didn't need to be on, so I thought it was a win/win. It was a waste of time, and money as we have private paid for AJ to have certain therapies this month. Live and learn Mommy. After dealing with a less than friendly and helpful lab technician and the rude staff at the particular clinic we frequent for urgent care, I decided this was our last visit. It is time to find a new pediatrician who is closer and to whom I'll be more likely to go to when things of this nature pop-up.
My poor little man was so miserable. He sooooo knows the routine. We go to the doctor, the look in my ears, I scream, Mommy drives to pharmacy, they don't have the script ready, so she gets mad and we drive to get some food, then come back, all the while I sit with the saddest most pitiful face, complete with bottom lip and tear action. This is one area I am proud to say I am not patient with. Dear pharmacy, allow me to plop my dehydrated, crying, in pain child on your counter. You really want to make him wait?
Antibiotics take effect almost immediately with this kid. I mean it. He woke up the next morning oh so happy and full of energy. And hungry. Good Lord. We put on his left ear (the infection is in his right) and he did great all day with it. He napped and also slept through the night, which was a big relief to both Daddy and I. We are so spoiled that AJ has always been a good sleeper. When he doesn't it throws the whole house off. Even the pooch. Today, I cringed and held my breath as we put on his right ear. No tears. He was bilateral by mid-morning and stayed that way all day. Whew...I had visions of last summer and it was frrrrreaking me out. In short, I love antibiotics. :)
~During Friday's pool therapy, AJ's PT once again reminded me how horrible his leg/foot look. So I'm back to taping him with kinescio tape and the regular regimen of trying to keep him loose. Its really disappointing that his tone is kicking in all the way up his left arm and shoulder too. Boo. She mentioned the word Baclofen again. As in the medication. I've mentioned the Baclofen pump before, and while we've deemed that would not be appropriate for him (and now there is new research showing the Baclofen in pumps may increase seizure activity), now Baclofen as a regular medication may be needed. Groan. She didn't say anything else about it, and I didn't push. I'll just keep on doing the regimen and we'll hope for the UCB's, night splint, and a miracle.
~Last weekend wasn't particularly fun. AJ had A LOT of absent seizures. And I mean A LOT. Jeremy counted upwards of 60 just in the morning alone. All a few seconds in length of course, but yeah. That many. Which means his medication isn't doing the job anymore. Well, he did throw up that morning, so that could have made it worse since his meds didn't stay put. He seemed better after a nap, but then they started up again. I put in a call to his neurologist. We did a blood draw to check his Keppra levels: which I am anxiously awaiting. Since he's grown so much, odds are its most likely just a dosage change. I sure hope so. EEG's are traumatizing for this kid, so I was glad to hear they didn't want to put him through that. Since he had seizure activity, we don't have to do the EEG to see if there's been activity. I also asked if taking his Keppra a bit off schedule could cause the activity. It depends, each kid is different. Oh generic answers, how I dislike you. I think its safe to say it does for AJ.
~We spent yesterday morning in our bedroom with AJ serenading us with tunes on his keyboard. Daddy even joined in with lyrics. We packed our entire closet and dressers into boxes. Things are more and more sparse around here. We are making terrific progress and I'm still not overwhelmed. Imagine that. I think one of the biggest calming factors is that we've hired movers. I was wishy-washy about it from the beginning, but it has proven, by far, to be the best decision we've made in regards to the move.
~Tomorrow is Monday, which means its "I wanna quit school" day. The day in which I whine and feel overwhelmed and question why on earth I decided to go back to school in the midst of all of this. Monday's the last day of the class week, which means the weekly big project or paper is due. Tuesday rolls around, which will mark the beginning of Week 3 of this class, and I'll be fine. I am contemplating taking more than one class per 5-week block once AJ is in school in the fall. The only issue is financial aid only allows one class per 5 weeks, so I would have to pay for additional classes. My university requires that you get your feet wet with a few classes and show you can handle the workload before they'll allow you to add additional classes to each 5-week block. I would love to finish my degree sooner than later. Its either more classes, or a part-time job. Both freak me out. The job because I have visions of AJ needing me in some capacity, whether it be picking him up from school when he's sick, or needing to go to an appointment and I'd have to work. There are still enough of those appointments that I'm just not sure I could find something flexible enough. But, I am willing to look.
~Jeremy is researching programs to begin his Master's/Nurse Practioner Degree. Wish him luck!
~AJ absolutely LOVES riding horses. We've gone ahead and signed him up for the 3rd session, so he'll be riding until early September. Here he is in all his glory:
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