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.

Almond Milk and SPD

Wow, it's been a busy couple of weeks. We had a great time in Ohio and Culley didn't miss a beat despite no OT for almost two weeks. He started preschool the next week so Finn, Culley, and I have been living in Denver three days a week for the past three weeks. Finn had his fifth birthday and I'm currently procrastinating making the final preparations for the party in two days.

We did do BioSET 2 weeks ago and it was really fascinating. Culley cooperated for over an hour by holding onto a brass bar while the doctor sent small amounts of electrical current into a meridian on his other palm. He seemed to enjoy watching and listening to the computer's response to each new waveform that was introduced. The results showed that he does, as we knew, have an allergy to dogs and cats but also to cattle, some molds and fungi and many types of feathers as found in down pillows. It also showed that he has some systemic inflammation and a decreased ability to release toxins from his body. In addition, he has a sensitivity to dairy :(  My boys both LOVE milk! As a treatment to clear some of the allergies, Culley had to carry around a very small bottle of energized water. It sounds like hocus-pocus but if it works, I don't care what it is. We started referring to it as his "magic water" which was not easy to keep track of, in the care of a 3-year old. I switched to rice and coconut milk as a substitute for dairy but he couldn't stand it. Next I tried almond milk on both the kids and I thought it was pretty tasty. Culley would take a couple sips and be done with it and Finn practically gagged. Oh, well, there are other ways to get protein, fat, and calcium, right?
The following week, Culley saw his audiologist who ok'd scheduling surgery for his second cochlear implant. I was hoping for the end of July so I was shocked when we found out it could be done in 9 days! We planned for him to go to preschool Tues-Thurs as usual then stay an extra night since the surgery would be on Friday. My mother, Gram, arrived this week to help out so the pieces were all falling into place. You know to worry when it all seems too perfect. After watching the fireworks on the 4th, Culley began complaining of pain in his ear, the one without the implant. Long story short, the next day we were back in Denver, it was draining fluid, he had an infection, surgery cancelled. His ENT informed us that he'd have to wait 6 weeks for surgery:( UGH!!

Well, now he can focus on preschool which is going very well. He had one day where what we're assuming is SPD (Sensory Processing Disorder) caused him to become withdrawn and act strange but otherwise the staff is pleased with his language development and level of engagement. At home, his language is finally taking off. He usually comes up with something new to say everyday so we are encouraged by that but his sensory seeking behaviors are on the rise again. His auditory/verbal therapist has been encouraging me to pursue more formal evaluations for him so we can hopefully figure out if his atypical behaviors and learning patterns are because of SPD or is there something else, like autism, affecting him? With these type of situations, it gets complicated. Diagnosing SPD is the job of an occupational therapist (we've had three), an autism screening should be conducted by a qualified child psychologist as far as I know,  and there are very few of these professionals who also have experience with hearing loss and what effects it can have on learning and behavior. The OT evaluation we had scheduled three weeks ago for two weeks from now, is being cancelled by the hospital because our insurance company cannot guarantee coverage for such a thing. First I need to jump through a number of bureaucratic hoops to even get to the point where they will revealed whether they will cover it or not. My plate is full enough and I really like his current OT, whom I'd have to discharge immediately as the first hoop. So the formal OT eval has just been pushed off my plate like a nasty brussel sprout. Instead, I'm redirecting all of my energy into pursuing the behavioral evaluation and autism screening, and this group happens to know hearing loss.  Which reminds me, there's an important phone call I need to make.

To BioSET or not to BioSET...

So during Culley's OT appointment this week, his therapist noticed the smathering of raised and red bumps on his forearms. We think they're ant bites since he'd been playing in the dirt a lot recently. He likes to get close-up to his trains and trucks as they go through the dirt so it's likely he was leaning on his bare arms and had a reaction to something in the dirt. I explained to her that he has very sensitive skin so mild skin rashes of unknown origin are not unusual for him. That's when she mentioned having a consult with a doctor who specializes in allergies at the local Naturopathic Clinic.  She referenced the connections between food allergies/sensitivities and language development especially found with Autism and Sensory Processing. Considering that his language development is somewhat of a mystery at this point and he does have some known allergies and some other suspicious reactions, such as eczema, I decided to look into it. I'd heard good things about this doctor and a technique he uses to desensitize people to their allergies. It's called BioSET and it's a system that uses energy responses to diagnose and treat allergies and many other conditions.  It's not recognized my the medical community, as of yet. Since Culley is allergic to dogs and cats, he takes allergy medicine everyday because he lives with a dog and a cat. I know, I know, it sounds awful but my husband and I labored over the decision to get rid of our beloved pets when Culley was first diagnosed with the allergy almost 2 years ago but found that we just couldn't do it. Culley's doctor, a pediatric allergist at a world-renowned hospital, assured us that it wasn't necessary to get rid of the pets as long as the medications were working for him. Drake, our Golden Retriever,  is 10 years old now so we figure it won't be long and Butters was recently diagnosed with kidney disease even though he's only 5:( So we figured we'd let them live out their lives and never get another pet. Still sad considering before my kids, my life centered around animals, being a vet tech and always owning pets. So the idea of having Culley desensitized to his allergy is very intriguing.  And since I'm always searching for pieces of the Culley puzzle, finding out if he does have a wheat or dairy allergy is also important. After a consult with the doctor this morning, I set up his first BioSET appointment for a couple weeks from now.

What else is going on? Well, we finally were able to arrange a child psychologist who works with deaf children to observe Culley during one of his auditory/verbal therapy sessions - recommended by his A/V therapist. She observed that while he doesn't have the characteristic signs of Autism, some of his behavior and learning patters are atypical and may not be attributed to his SPD. She recommended that we have a formal evaluation and autism screening done. I'm waiting for the contact info. to move forward. While I would have been relieved to hear her say that he's fine and we're already doing everything we can do for him, I wouldn't have really believed it. I feel good that my gut feeling, that something else is going on with him, is the same as hers.

We're off to Cincinnati tomorrow for a week, visiting family. I wasn't able to connect with an OT who does craniocacral massage there so let's hope he doesn't miss it too much!

The story so far

I started this blog specifically for other moms who are desperately searching for answers, information, or just a story similar to their own, like I was at the beginning (and still do from time to time). After that I'm happy if anyone is even slightly entertained by my ranting.

So, my boys...I'm the only female in a house with five males. One is my husband, two are our sons, one is our cat and one is our dog. The "little" one is our youngest son, Culley and he is 3 years old. His brother, Finn, is almost 5.

Culley at 14 months

We realized that Culley was going deaf when he was about 2 years old. I had just begun to get my feet wet again in the working world since life seemed to be calming down a bit...haha, should've known better! When I came from work, the whole family (pets included) would be waiting at the door to greet me, except Culley. He'd be playing with his trains totally oblivious of the hub-bub. This wasn't the biggest scare he'd given us. When he was 14 months old, he was taken via helicopter from the mountains where we live to the big city of Denver so they could save his life. He was 4 days into his first bout of RSV but was quickly losing the fight. After 2 1/2 weeks of being on life support, he began the slow process of recovering. We were told he'd make a complete recovery and until the following winter, we thought he had.

Over the next year we got familiar with audiograms, ABR's and hearing aids. The hearing loss was moderate to moderately severe, which we were told was correctable with the use of hearing aids. But we knew it wasn't stopping there. Less than a year after his original diagnosis, he had reached the severe to profound hearing loss level. He'd been through two pairs of hearing aids and many adjustments to help him hear as the loss progressed. He started speaking before he was 18 months but by age 2 1/2, his speech was less intelligible and no more developed, despite speech therapy. He'd developed some strange behaviors that winter like putting the top of his head on the floor when he played and grinding his teeth constantly. Those behaviors and his stalled out language development were clues for his Colorado Home Intervention Program provider that there was more going on than deafness. He was evaluated and it was confirmed that he had Sensory Processing Disorder,  now he's considered Deaf Plus. Since then, occupational therapy has become a big part of his life. With the use of hearing aids, OT, and speech therapy, he was showing small and inconsistent improvement with his language development. But as his peers were acquiring language, Culley was quickly falling behind. We did try signing with him after his diagnosis but he showed no interest. As his CHIP provider once said, "he's like a deaf hearing child", meaning he's deaf but he doesn't know it.

In February 2011, he received his first cochlear implant and he was understanding speech within 4 days of activation. With the use of his implant, he's at a mild hearing loss level. With the hearing improvements, his pronunciation has improved dramatically. With lots of OT: hippotherapy, brushing, and sacrocranial massage being the most effective currently, his language is developing, though not in a typical way. He's been in a mainstream preschool for about 5 months now and he loves it. We're taking it day by day and it's finally stopped snowing here so we're all in a better mood.

I hope this blog will be about how I go through life trying to balance the challenges with the triumphs and trying to not lose sight of the big picture which is enjoying life with my boys.