A quick sidenote, the doctors feel strongly that Jakie will pass today, perhaps even in the next few hours. His pulse has left his feet, the pulse in his wrist is faint. However, yesterday, Jake was peaceful and lucid for a while, they were able to take him outdoors and have some incredibly special time with him. At a time like this, that is an immense gift for his family. Today is going to be hard, harder than any words can express, but they have the peaceful memories of yesterday to help them through it.
I've been out of my groove lately and as such, I owe you all some smallish updates. Nothing too major, but a few things here and there.
Last week, KayTar had strep. Yup. Strep. Again. Aren't we predictable?
The good news is, we can now get KayTar to (secretly) take oral medication, so she didn't have to get a nasty shot. We crush and hide 1/2 a Flintstone vitamin in her baby food vegetables every day, without problem, so we decided to try the same thing with a chewable antibiotic and it has worked like a CHARM. When she is seriously ill and refusing food and drink, she'll still need the shot, but at least not EVERY time. This also means we are no longer completely limited by our fever reducer options. Motrin clearly works better than Tylenol, but we have never been able to use it for KayTar because it does not come in the bottom rocket form. Now, as long as we can talk her into eating some veggies, we can sneak in medication. That is like one giant sigh of relief.
BubTar spent Friday night with my parents and his cousins (no injuries this time!) and by the time he got home on Saturday he was sick as well. The Fever of Doom started and we thought surely is was strep and prepared for a trip to the pediatrician on Monday, but just like that the fever left and all that remains is an annoying cough that is controlled well enough with a wee bit of cough medicine. He's back to himself again.
KayTar's therapy schedule is being turned on its ear (is that REALLY the phrase? Can someone please explain it to me, because I don't get it). Last week she was released from OT (yay!). We've had to cancel deaf co-op for two weeks due to BubTar's thumb situation and illness. I received a call from her speech therapist on Monday to notify me that she is having to take an extended personal leave of absence, and she will be coming in one Fri/Sat a month to try and get her kids in. So KayTar's speech therapy, the one she needs the most, will be down to once a month maybe. Then on Tuesday, her developmental therapist told me that our physical therapist, who has been here from the beginning, the ONLY one who has been with us since the beginning, is leaving in January. They will be down to only one physical therapist, which means KayTar will be wait listed and probably won't get anymore PT services before our transfer to the district. So basically, we are down to DT, which she doesn't really need all that much, and deaf co-op, which we haven't started yet and I have no idea what to expect.
While I am happy her schedule will be less packed, I am frustrated for multiple reasons. The pediatrician and I both feel that hyperlexia is on target for KayTar. The key to "treating" it is intensive speech therapy. I was looking forward to discussing this with her therapist and getting a plan in place to work through it. KayTar's speech is improving, a lot of it seems more spontaneous and natural, but still the percentage of echolalia is very high. For example, in DT this week, she did not say ONE spontaneous phrase. She repeated what the therapist and I said, and she also quoted a couple cartoons, but nothing spontaneous. Her DT and I were discussing how frustrating it is, because she APPEARS to be on target unless you know enough to recognize otherwise. Or unless you spend the day with us. So, she won't be receiving the ST she needs right now, and of course, the insurance that covers private therapy runs out in February. I completely understand her therapist having to take this time, and I don't begrudge her that. I am just a bit miffed with the situation. My child needs help she won't be getting. The other issue is physical therapy. This one is needed. She isn't running or jumping like other kids. She's not going up the stairs on her own. She can't walk across grass without falling over. She can't even walk on slanted pavement without falling. She needs physical therapy, she needs to strengthen her muscles and learn how to make them function the way she would like. But again, she won't be receiving it. We will have today and next week, and I think that will be it. It isn't anyone's fault, of course. It is just frustrating. The district services are still a big question mark. She doesn't even get evaluated until next month. I worry that she will be missing the last of these very important therapies and then have nothing to replace them with come her third birthday. Even if she does qualify for services (ST/PT), she is still missing some extremely important time in her private therapy, which will be gone for sure come February. I hope she gets really excellent district placement and that perhaps we might come in contact with someone who is familiar with hyperlexia. It seems that we will not be able to get a formal, official diagnosis before her placement, so I'd love someone on staff to be familiar with it. It seems to be rare, especially when not comorbid with autism (this is still shady territory, sometimes it is classified as a high functioning spectrum disorder and sometimes it is classified as a SYMPTOM of autism, and sometimes it is classified as a non-spectrum stand alone disorder that sometimes co-exists with autism, go figure). I'm thinking of calling and talking to the district speech therapist about it and see if she has any advice to smooth the transition and get KayTar in the meantime.
In other news, KayTar has become quite the little singer lately. I love it so much, her little voice and intonation. Adorable. So consider this my early Christmas gift to you all, a musical medley a-la-KayTar.