Nobody Seems To Get It!

I don't think anyone really understands what it is like to have a child with Tourette Syndrome. Unless you have a child with Tourettes or a neurological disorder, you just don't get it. Elijah has to have consistency. I can't waiver from that. I can't compromise and let him have one day where I waiver from the "rules" I have established. Through trial and error and a LOT of rough days, I have learned this. It may seem like a good idea to compromise and give in so things run smooth during that moment, but then I pay for it for several days. I leave to go out of town for three days tomorrow. I can't waiver at this point. I can't compromise, or the person keeping him will have a rough three days. I can't think of what is right in the moment, I have to think of what is right for the long haul. I guess it is OK that people don't get it, but don't think I am too hard on him, because I am not.

Update on Loss/Damage Coverage

I have been on the phone several times with Cochlear and with my home owners insurance. They can cover it under home owners, but it would have to be lost or damage AT HOME. They can also cover it under a personal articles policy that would have no deductible if lost or damaged. Well, Cochlear has had to send me three different emails, because they kept making mistakes on a quote for the home owner's people. Finally, after we get it all figured out, I am quoted a price of $1330 for a YEAR to cover both processors....$110 a month. WELL, that is a heck of a lot more than the $550 I paid ESCO for one years worth of coverage.

To top things off, I get the letter in the mail today stating that ESCO cannot cover Elijah's processors again. When I checked Cochlear's website, the warranty PLUS the loss/damage for two processors is $1570. I just don't need the warranty right now, I just need the loss damage. Needless to say, I am not happy. I may have to talk to the home owner's insurance people and see if that is the ONLY coverage they can offer. I am sure I could call some other insurance companies, but they may not deal with me since my home owners is not with them. You never know though. We may just have to roll the dice and go without coverage for a year. He has never lost one before and been implanted for almost 11 years. I just hate the thought of it.

Venting--Cochlear Americas and ESCO

About two weeks ago, someone posted on one of the deaf/hard of hearing forums, that ESCO could no longer COCHLEAR processors. Elijah's processors are covered under ESCO until Aug. 11th. We purchased two new Freedom processors back in 2010 and they came with a warranty, but not loss/damage, hence I purchased ESCO. I finally had a minute and checked ESCOs website and COCHLEAR was not listed. So, I called Cochlear and you can no longer cover processors through ESCO. Now, I am not really sure WHOSE decision this was....Cochlear or ESCO, but either way it is irritating.

Why do I have to find this out through a forum? Why can't either COCHLEAR or ESCO contact me and let me know this. ESCO knows that our coverage expires on August 11th, they could send out a letter. Cochlear suggested I call my home owners insurance and I am getting Cochlear to send me a quote for cost of replacement. I will then email that to my agent who can quote me a price for a personal articles policy. This will cover the processors if they are lost or damaged and there will be no deductible. Now, lets hope it isn't more expensive than ESCO. Now next year, when the warranty runs out I will purchase a warranty WITH loss/damage and cancel the home owners personal articles policy.

I asked COCHLEAR what is happening with people who upgrade now and they said their policy has changed and UPGRADES now come with a warranty and loss/damage. I guess those of us who purchased new FREEDOMS or upgrade to the NUCLEUS 5 before then are just having to figure things out on our own.

I really think all parents of children who will be getting a cochlear implant NEED to be educated about the expenses that come down the line. No one mentions how much an extended warranty is. No one tells you how much it costs to repair them. I hate to complain, I really do, because without his CIs Elijah would be so lost. They have been a miracle for him....that and the therapy afterwards, but parents need to know what it will be like to maintain this equipment. It seems like there is always something to worry about.

Jacob will be 16 on Monday!

Jacob will be 16 years old this coming Monday! Time sure does pass by too quickly. I still remember the night he was born. He was so tiny and now he is 5 feet 9 inches tall!

We had dinner with my mom and my brother's family this evening, because her birthday is tomorrow. Then they came back to our house for Jacob's party. My dad, stepmom, aunt and stepmom's mom came over too. We had cake and ice cream and Jacob got his presents! His present from me was a new bed frame and bed. We got the bed frame at Ikea and the mattress from Sleep Experts. He has had it for a few weeks and really likes it.

Jacob also has his driver's permit! OH MY, he is a pretty good driver, except for left and right hand turns. He is still learning though and he will get it! It has been a good day for us all. Jacob is now back playing games on his laptop that he bought with the money for his birthday, so he is definitely happy!

Endocrinology visit today!

Elijah makes a trip to the endocrinologist every six months. The last time we were there, he had not grown much and didn't seem to be entering puberty yet. Today's visit was a little better. He had grown an inch in the last month and according to the doctor he should hit puberty pretty soon. The doctor said that his boy parts had grown so that means there is testosterone, so that is good. Elijah wasn't too happy to have these parts checked out, but it was painless and quick. We go back in January and I hope we see more growth! This kid just doesn't seem to catch a break in any area it seems. He is done with doctor appointments for the summer at least. Tics are about the same, maybe a little better. I noticed today that he doesn't tic much when he plays the Wii!! I wonder if he is just concentrating on playing and this keeps him from making tics. Who knows!

Tics Are Still Here!

Elijah's tics have lessened a very small bit in the morning, but are still pretty intense in the afternoons and evenings. I called his doctor today and she decided to add 1/2 a milligram of his tic medication to the mornings. We will see if that helps. One of his new tics is to BLOW out of his nostril as hard as he can. He sounds like he is blowing his nose, but has no Kleenex. I know he can't help it, but it is sort of gross. The licking tic is also still here. He licks his hand or fingers and touches his face. He will do this over and over again. He also makes his noises! They don't seem to bother him much and they really don't bother me, but I know it is hard for people who don't get it. Its not like you can tell he has tourettes when you look at him. Hopefully adding this medication back to his morning will at least lessen the intensity of these tics. I am also hoping the blowing the nose tic runs it course and goes away before school starts. We may have to get him some tissues to carry so at least when he feels the urge he can put a tissue near his nose.

Update on Tics and Sleeping!

Elijah's tics are still around, but they seem to be a little less intense.  I notice them more in the afternoon and early evening before he goes to bed. I realized today that I hadn't heard any LOUD tics in a while, but had heard some quiet ones. I'll have to pay a bit more attention tomorrow.

Now Thursday and Friday night he had a hard time going to sleep. We had eaten dinner late and he had a late bath. He gets an hour of electronics at night and I think he was playing to close to his bed time. I changed things up and now there are no electronic games after 8:00 and he fell asleep just fine last night. I am very glad of that! He slept almost eleven hours last night! He fell asleep quickly tonight too! I'll update things in a few days and hopefully we won't have to add an additional dose of a medication.

Friday Night is Pill Night!

Once a week, I sit at the kitchen table and get Elijah's medications ready for the week. He has this exact pill dispenser that you see pictured above. It really does help to have this organizer.Jacob takes two medications a day and I take three, so I get those ready two. However, Elijah's medications are the real work. He takes four pills each night and seven pills each morning for a total of eight different medications. There is one pill I have to cut in half! That makes life even more fun. He never complains and takes his pills each morning and each night. He even goes and gets them out of the weekly dispenser each night when I remind him to take them.

I so wish he didn't need all of these medications. There is one pill for his asthma and the rest are for his ADHD, OCD and tics. He also takes two inhalers in the morning and the same two in the evening! Some pills are yellow, others are green or white, but they all help him. His tics are about the same and throat clearing has been added to his list of vocal tics. I hate to say, but they wore me down today and so I know they must wear him down at times. If they continue, then I will call his doctor by Tuesday and see what she has to say. I have tried to catch him on video again, but if he hears me turn on the flip camera he just stops. Now some would say he can control his tics. Well, he can for a while, and then watch out...he explodes with tics. I just can't seem to catch them on video.

I am thankful there are medications that can help him. However, there is no blood test that can show which ones really help and HOW they help OR if we need to change something. It is all a big of a guessing game, and sometimes doctors make very good decisions and sometime we try something and it just doesn't work. I'll keep y'all posted on how it goes!

More Tics!

I took another video of Elijah, actually two videos, and figured out how to splice them together. I am technically challenged when it comes to videos. You hear more of his noises on this one and see the licking again. He is making a LOT more noise than is what on the video, but I can't seem to catch him in the act.

You may wonder why I video him, well, he doesn't tic on command and there are some(teachers, principals and some doctors) who have never really seen him TIC like this before! I want to have evidence for the doctor when I call tomorrow. I'll be more than happy to email her a copy of the video or send her a link to the website. I know she believes me, but I want her to see it. This video is just a small example of what he is going through right now.

Here it is!

Tics are Back!

Elijah and I visited the doctor about two weeks ago and he decided to take Elijah off one of his medicaitons for his tics. He stated that another medication Elijah was on SHOULD control the tics and this one we were removing, let's call it medication R, was a duplicate of medication S, so he didn't need R any more. Well, here were are a little less than two weeks later and TICS are back in full force. He also isn't going to sleep at night like he used to, so last night I gave him 1 mg of medication R. He slept almost 11 hours and has been much better today. He isn't as moody and I am seeing fewer tics. Now really, tics don't bother me, but one of them is him licking his hands and rubbing his face. After a while, his face gets really chapped. He has two sores around his nose already and I don't want more. I tried to get a video of his tics to show the doctor, and got this short video. He noticed me recording him and controlled his tics. He is also making LOTS of noises, which aren't an issue, but can get on your nerves after a while. I know it can be very physically exhausting for him as well which affects his mood!

We actually saw the doctor last time we went in. He usually sees the nurse practioner and I will call HER tomorrow to get her opinion. He had been on 3 mg of medication R and I just gave him 1 mg yesterday. I would rather he NOT have to take medication, but I would also rather he not harm himself. Also, licking your hands all the time can spread germs(there is my OCD at work!)

Here is a very short video of his tics from last night.