I cannot believe we’ve been home for 9 months already! Time sure flies. It seems like I’m at Texas Children’s hospital at least twice a week lately: once in the Medical Center for an appointment, and once in our neighborhood for Occupational and Speech therapy. I wish they had a frequent-flyer type discount program, especially for the parking garage!
So it turned out that Isaac does not have a busted ear drum. It seems that his issue is negative pressure behind the ear drum, which is causing them to be sucked inwards, creating a large canal volume. Large? Yep, at least now that there’s no more foreign matter in there, they’re larger than they should be. So the ENT doctor suggested trying some nasal spray or put in tubes. I had visions of trying to get Isaac to inhale a spray from his nose…it took me 10ms to decline and opt for surgery. So Monday we’ll be putting in some tiny tubes to equalize the pressure and help those drums slowly ease back where they belong. The doctor said that having the drums so far in might be causing him to hear muffled noises instead of clear sounds. I sure hope that’s the case and that we’ll observe some speech improvements.
Sunday 28th March was a one-of-a-kind experience. An expensive one. Isaac had a seizure around 7:50am upon awakening and he wouldn’t come out of it. We waited and then finally decided to give him the usual gel shot, which in all previous cases worked within 30 seconds or so. Not this time. 5 minutes later his convulsions started increasing again. So we did the inevitable and called 911. Within under 4 minutes, the ambulance and fire truck were at our door and about 5 EMS guys flocked in with a ton of gear. I have no idea why a fire truck is sent in such cases. Anyway they gave him some more meds and transported us to the hospital. I rode with the ambulance and Lori got ready with Isabella and drove there. Isaac’s convulsions almost stopped but not completely. At the hospital they gave him more meds and after another 10 minutes or so he finally stopped and fell completely asleep. He did kick a bit, which was an indication that it was over. We got there around 8:30am and left at 1:00pm. That was one expensive stay in the ER judging from the bill we received today. We’ll see how much our beloved insurance carrier is going to pick up from this tab. I have not seen an ambulance bill but I’m sure it will come separately. If I get one from the fire department I’m gonna be mad as I didn’t get to ride at least! That’s a hint for you neighbor ;)
All this talk of hospitals is surely boring you out of your mind, but I’m not done yet. We had a visit with a clinical psychologist and she suggested we try a stimulant (like Ritalin). So after yet another appointment with the pediatrician, we started him on a very low dose: morning only. He seems to be doing better, although the bad side effect is that he won’t eat lunch or drink anything. So we’re monitoring his weight now to make sure his change in appetite was due to this medication and not some cold (which is common right now and he was quite congested this last week). So on the 22nd we’ll visit the pediatrician again to see how he’s reacting. In general he’s been less aggressive at school and seems to be settling in a lot better. The fact that we have not received any “hints” is a positive thing. A couple weeks ago they were concerned because he was trying to bite the teacher’s hand (this was before the meds) and told them that I would see if Mrs. C (PPCD teacher) would talk to them and give some advice. She was super nice and went to the pre-school for two hours or so one morning with her assistant to observe, take notes and make recommendations. They were delighted and I think they feel better about the situation now. We’re very grateful to have her so involved in his education. In a couple of weeks we’re hoping to go back to a normal routine of full days as in the meantime Lori is still picking him up at 3pm.
Yesterday we had a visit with the Neurologist and we’ve been referred to an Epileptologist. We talked for a while about all sorts of things I’ve been reading about, and she helped us to separate facts from fiction. She ordered some more tests so afterwards we took a trip down to the third floor to draw blood. Needless to say he wasn’t happy as the nurse didn’t get it right and as usual, tried to re-work the needle back and forth. I stopped her immediately and asked her to try again on the other arm. This time she was successful and we were out of there around 1pm, $10 poorer after paying for parking (this is getting old!) and back home for PPCD class by 1:30pm.
Isabella had her first speech therapy session on the same day and time as Isaac, which at least saves me some time in the morning. So Tuesdays are going to be intensive therapy days…OT for Isaac at 8am and then ST for both at 8:45am. During the 45 minutes waiting for Isaac, Isabella and I spend some time reading books. She’s been enjoying that especially now that she understands English better. Once we’re done at 9:30am, I drop her off first, drive back almost all the way home to drop Isaac and then off to the office, getting there around 10:35am if I’m lucky.
At school she’s been learning a lot. I think one day they learned about what each “liked” because we’ve been hearing phrases using that word all over the place. “Wow, I like it!”; “Do you like me?”; “I don’t like that”. So she keeps asking if we like her and even after telling her “yes”, or that we do like her a lot (which usually prompts more questions such as if we like Isaac and then proceeds to pose the question for each family member, pets included), she keeps asking if we like her over and over. I think she just loves to hear it and knows she’s starting to annoy us after questioning 4 times in a row. Every once in a while, to get back at her I start telling her “I like you Isabella!” to which she responds “I know, I like you too” and after about 3 repetitions she finally sighs and loudly says “Ok papa, I KNOW!”. Another game she loves is when asking if I like her clothes and I just sit there saying “hmmmm..”, looking up in the air with eyes going from side to side, rubbing my chin as I “think” about it and then blurp “NO!”. She giggles, laughs and asks again. I swear, we could easily keep this up for an hour unless I stop.
This month we begin celebrating a lot of “One Year Anniversaries”. Just yesterday was the OYA since our dossier was submitted. And there will be lots more to remember in the coming weeks. The kids are ready to jump in and start swimming. The filters have been cleaned, the clogged vacuum thingamajiggy plumbing is once again wide open after buying an appropriate tool to clean it out and lots of work remains hanging, like washing and detailing cars, trimming bushes so you don’t have to walk sideways in a ducked-position to miss the overgrown branches…you get the idea. Now it’s time to give my fingers a rest and stop yapping.
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