Second Implant Activation and Preschool Jitters

Activation the second time around was much different than the first. The first time Culley seemed to enjoy the input immediately. This time, he put his head down when the audiologist introduced the tones. He played the conditioned response game reluctantly and seemed very uncomfortable about the new sensation. Fortunately, he does replace the magnetic coil himself every time it falls off so he does want the input, just not without his "good ear" also being turned on. We're supposed to give him at least one hour a day of practice listening with just his new ear but it's been tough because after about 15 minutes, he starts asking (or finds it himself) for his other processor. So we're doing it in several small increments a day. He can't understand speech from it yet but that's not unusual since it's only been 3 days since activation.

Today is Culley's second day of full-day preschool. For his first day, his entire entourage was there - his SLP, his itinerant teacher of the deaf, school audiologist, and the assistant teacher whom he loves and all of these folks he knows from last year's half-day program. Yesterday he cheerfully said good-bye to us and my husband and I left feeling all was well. Today, he was anxious from the get-go and I see that none of his support staff is there, not even his beloved assistant. His preschool teacher (who is new this year) puts the FM mic around her neck, plugs in his adapter, then walks away. If she even turned it on, she definitely wasn't close enough for him to get the signal properly. I wanted to explain to her how to do it and tell her that she needs to ask Culley if he heard a beep but she started morning circle right away. I hung around waiting for a time to tell her but I was politely requested, via song, to make my exit. Ugh! I left Culley sitting there looking like a deer in the headlights. I was able to give the FM message to the substitute assistant who also had the deer in the headlights look. I keep telling myself that he'll make it through the day and be that much stronger for having to fend for himself. I'm going to try to enjoy my second day of freedom as much as I did yesterday by going for a mountain bike ride on this gorgeous late summer day.

As is the case too often, I forgot to mention that Finn had a wonderful first day of kindergarten. He told me that kindergarten is even better than preschool! He's so brave and self-sufficient. It's so nice that I don't have to worry about him.

Whew, Surgery Done!!

We're one week post-op Culley's second cochlear implant surgery! We went on a family camping trip Thurs-Sat. before his Monday surgery. We had a great time but I'll get to that later. We returned to a beeping answering machine with several messages from the hospital notifying us that they weren't able to get approval for the surgery from his insurance company and that we needed to call them right away. Well, of course being Saturday I was unable to contact anyone about the matter so I spent the next couple hours pacing and fretting. Then I decided to let it go and once again adopt the philosophy of, if it's meant to be, it will. It turned out that believing the surgery wasn't going to happen was much more relaxing than anticipating it.

Monday morning, I called the hospital and the person I spoke to assured me that everything was in order with the insurance. I couldn't reach any of the people who had left messages so I was a little skeptical that this person knew what she was talking about but what else could I do? First we had to head to the pediatrician so she could make sure the ear infection was cleared up before making the hour and a half long trek to the hospital (and continuing the fast that began at bedtime the night before). There was some question about the ear drum looking a little red but after many failed attempts to reach the surgeon we all decided that we should just continue on with the plan. We checked in at 1pm for a surgery start time of 2:40pm and the long wait began. The OR was running late so the surgery didn't start until 6pm!! Culley was so good and patient, Tom & Jerry helped immensely with that. Every half an hour or so he would politely request something to eat, "I want pretzel bites please", "I want goldfish please", etc...The cutest was when we were finally headed to surgery and Culley's pre-med was really kicking in he slurred, "I want chicken nugget please!" For once not being a big eater really paid off for him.

Thankfully the surgery went off without a hitch and we were back at our house at 11:30pm. Culley woke up very angry from anesthesia but that's normal for him. The next day, he complained a little about his "boo-boo ear" but after a dose of Tylenol, he was feeling much better. Just like last time, he took a long nap in the afternoon and awoke 100% back to himself! He's schedule for activation in one week.

I'm still battling the insurance company. The day after surgery, we got a message from the same woman at the hospital again telling us that the insurance wasn't confirmed. Oops, because they did the surgery anyway. There is a ridiculous misunderstanding with the insurance company that I have called and cleared up four times now. Every time the representative says, "Oh, ok, I'll go ahead and make a note. All taken care of!" Now we have this big 3 hour evaluation/Autism screening scheduled for tomorrow (the one we've been trying to get done all summer) and they're about to cancel it because the insurance company is denying coverage! UGH!! There is a supervisor working on it as I type. I don't have much faith in her either.

School starts in 10 days and I'm already worrying about the new preschool teacher, will they know how to deal with him so that he can benefit from school, will he be ok in full day and what about his IEP? Oh, the joys!

As usual, I went on and on about the stressful parts of life and didn't put enough emphasis on the wonderfully normal parts of life which definitely make up the majority. Our camping trip was a great and relaxing time! The boys got to fish and play in the water to their hearts content. The rest of our days are spent playing in the yard, riding bikes in the driveway, and just enjoying the rest of summer.

 

Second CI Surgery delayed again?!

One week to go before the much anticipated second CI surgery and the ear infection is still there! This surgery has already been rescheduled due to a draining ear infection three days before the surgery. It's been 4 weeks so I took him to his pediatrician to make sure the infection was cleared and apparently it's mild but present. She put him on oral antibiotics this time, he had drops before, in hopes of clearing it up before the surgery. It would have been nice to get the surgery done before school starts, in 3 weeks, but I'm starting to think it's not meant to be. Not right now at least.

Summer preschool is done and we're glad to not have to make the drive every week but also sad that it's done. The staff there was just so good and Culley's going to miss the other kids. We still sing the songs he learned there and we're implementing some of the strategies they used. Hopefully we can keep it up throughout the school year. His language is continuing to develop at a much quicker pace than it ever has. Complete sentences are a regular occurrence. He's showing much more interest in trying to keep up with other kids his age on a social level. Although it's a very good sign, it's sometimes hard for me to watch. These kids can only remember him as he was for the last year or so and haven't gotten used to the fact that he can hear well now and they don't expect him to communicate with them. I've seen them ignore him as he's timidly trying to talk to them. He's having to figure out how he can get their attention. I just keep telling myself that he's learning skills that will help him in the future and interfering on his behalf wouldn't benefit him.

We're getting ready for our last camping trip before school starts. I'm already fretting about the ear infection bothering him and about keeping the antibiotics cold enough in the cooler for three days. I'm sure the boys will  love it and we'll all be thoroughly exhausted and totally appreciative of our own beds when we return.