Jeremy's Blog

Well everyone, I just got back today from a week at Camp Barnabas.  This was my second year going there and I did a couple of new things this year.  I went to the petting zoo and to all the theme parties.  They have one every night.  Both Adam (my counselor) and I got to teach a guy named Cameron how to communicate with me.  The catch is that if you recall I am nonverbal and use my eyes to communicate and Cameron....is blind!  We were able to work out a way to communicate with each other.  He said it was the first time he had ever been able to communicate with a nonverbal kid.  It was very cool!  I had a lot of yummy food.  My favorite?  Popcicles.  I loved having Adam as a counselor and Cameron as a cabin staff member.  I also enjoyed having Nurse Cindy giving me my meds because she is really funny in the way she talks (she has an accent because she is from North Carolina) 

Tomorrow is the first day of MY LAST YEAR of school!   I am a senior!!!

Hey everyone who comes to my site - I'd love to hear what you all are watching on tv for entertainment?  Because I have been watching a lot of game shows on the Game Show Network.  My favorite is Lingo and Catch 21.  I have also been watching a lot of Nickelodeon.  So if you have any suggestions for shows you think I'd like, please send me an email! 

Unfortunately, this blog has been sorely neglected in recent times...we are hoping that a new look at it will change this.  From now on, Jeremy himself will be coming up with the blog entries he wants entered.  He will have full control of all content.  So hopefully this will remind us to periodically update it more frequently.  Here is Jeremy's first entry:

Hey Everyone who visits Jeremy at this website!  I just want to say that both I and my parents are doing great.  My grandma is almost done with her radiation therapy and we are all super excited for her!  I have been along swimmingly with my para, Mrs. Foster, because I have been staying awake in class.  And I have been making leaps and bounds in my psychological therapy with Dr. Belden, who might just be the coolest doctor at Children's Mercy in Raytown.

Once again, it's been too long since the last update.  Several things have happened.  First, Jeremy's pool therapist has left town and he hasn't been getting in the pool for the last couple of months (and we miss her!!) We just got word that he has a new pool therapist and will start back up again next week.  Luckily the weather has been so cold that we haven't been too upset about not being able to get out in it while wet. 

Since Jeremy's last surgery to release his tendon in his right arm, he has been doing extremely well.  He tolerates his splints much better and his driving has improved immensely.  We still haven't let him loose in the house yet, and it's been too cold to practice outside, but he's been driving his chair from class to class at school with much better accuracy.

Jeremy recently had an appointment for nerve tracking.  This was done by a physical therapist and she pointed out the different nerves in his upper body and how to massage them to loosen them up a little.  It was quite a process but we took the video camera and recorded what she showed us to have to refer back to.  Jeremy seemed to really enjoy most of it, but there were a couple places where it was painful for him.  She said one of the nerves in his left arm was "caught" in the scar tissue from his surgery but she was able to work it loose.  Afterwards, he said he was more comfortable.  It's basically a type of massage and was generally pleasant. 

It has been noticed that Jeremy has been having problems with his memory for a while now.  This really showed up the most in his school work, but he also says he doesn't remember things like our trip last spring to Colorado or last year, and he has also forgotton some people that he definitely should remember.  His psychologist is in the middle of testing his memory and so far he's been absolutely average.  I'm not sure what exactly we can do about it, but it is something we are keeping an eye on. 

Finally, they have noted at school a couple of times that he's been having some difficulty eating.  He seems to only be able to swallow his food if every single bite is washed down with liquid.  We haven't really seen this problem at home but will be trying to do the exercises the speech therapist gave and see if that may improve it.

Jeremy is doing great after his tendon release surgery last week.  The doctor said it went better than the other one in that he was able to cast the wrist in a slightly bent position instead of a neutral one.  This basically means the wrist is a little more flexible.  He has had a little bit more pain this time than he did before, but last time I think he was really putting on a tough guy face and not taking medicine when he probably should have.  But he still has been very tough.  Now he will be in a cast for a few weeks and will be out of pool therapy for a while. 

We do have a new device we got from Grandma Seales that we are trying out.  It's similar to a stationary bike but it will electronically pedal itself and he will be able to sit in his wheelchair while he does it. We are hoping it will be able to help Jeremy move his legs and hips to keep them flexible.  Unfortunately, we have so far found out that we will need to keep his braces on while he does it and the straps that hold his feet in are not long enough for that.  So we will need to find some other way to securely attach his feet to the pedals.  The other problem we are worried about is that the lowest speed setting (which is what he needs) allows the pedals to be stopped with very little resistence, so we are worried that if his tone kicks in at all, the motor will not be strong enough to force the pedals past that amount of resistence.  We are still trying to work out the kinks before we will give up and send it back. 

Thanks for all the nice wishes for Jeremy during his recovery. 

We are preparing for yet another surgery on Friday, though thankfully only an outpatient one.  He is having the tendons lengthened in his right wrist - the same surgery he had back in May except on the other side.  Though he has to wear a splint most of the time, he says he is much more comfortable now that we can stretch those muscles out.  He will be getting botox at the same time.  I have counted up and he has undergone 13 surgeries in the last 5 years.  This does NOT include each time he goes under anesthesia for getting botox (which is about every 3-4 months).  That's a lot of times going through the whole anesthesia thing.  It's always  a little worrisome until we get that call from the recovery room that he is waking up.  Please keep Jeremy in your thoughts on Friday.

Not really much to report right now.  School is going well except for some minor difficulties with homework which we are trying to deal with.  We just went in for another baclofen pump refill and yearly checkup with the rehab doctor.  They began to discuss the preparation for transferring Jeremy to the "adult" doctor that will follow his baclofen pump since he's now counting down to his 18th birthday.  I can't believe we are getting to that point.  That is going to be so hard to get used to...not going to Children's Mercy and having to break in a new doctor.  So far they are the only ones who have brought up him turning 18.  I know that some docs will continue to see kids until age 21, so I need to find out which of his other doctors will no longer see him once he turns 18 and get recommendations from them for transition doctors. 

We are still hoping John will find a job very soon.  He's had interviews and phone calls along with a lot of leads, but nothing has come of it yet.  Thank you to everyone who has contacted him with possible job leads.  We appreciate every single one of them!  Until next time...

Jeremy's grandma set up a fundraiser garage sale at her house in Oak Grove for September 11 and 12 (7-5).  Channel 9's Bev Chapman came out and interviewed everyone and the clip will air Friday at 6 pm.  In part of it she discussed with John his being laid off a few months ago and not being able to find work.  Hopefully by some long shot a potential employer will see him on the news and not be able to live without him...Thanks to everyone who helped donate items for the sale and, of course, all the shoppers!

It's been a busy couple of weeks.  Last week Jeremy went away for the first time since his injury.  He spent a week at Camp Barnabas, which is a camp for people with special needs.  He had a great time doing everything from swimming to zip-line to dancing.  He had a counselor assigned just to him who very quickly picked up on his spelling board and they spelled their hearts out playing lingo, hangman, or just chit-chatting.  I assumed since he was a boy, he would get assigned to a boy counselor but (as anyone who knows Jeremy will not be surprised) Jeremy somehow managed to get a very cute girl.  He says that was one of his favorite parts of camp.  The down sides to camp were that he apparently got very homesick and started getting a little sick towards the end of the week. 

He still is not feeling back up to par, with a cough and some stuffiness.  This was a concern because today we had his pre-botox appointment.  We were worried that this might have to be postponed due to him having to go under anesthesia for the botox injections and they are always concerned about him getting pneumonia after anesthesia.  So far the botox is still on, assuming he doesn't get any worse between now and then.  It was mentioned that it could be allergies, which would kind of make sense - even though he's never really had a problem with allergies - since last week he spent a lot of time outdoors and apparently the weather latey has been a real problem for people with allergies.  Hopefully that is all it is and it will improve in the next day or two.

We did find out that his pool therapy will be dropping back to only once a week, which was a big disappointment.  Hopefully this will only be temporary for a few months and we will be able to pick up the second day again.  He has really made a lot of progress in the pool the past couple of months.  He has begun to use his left arm a lot more (his weaker side) and has even been able to pick up the ball completely out of the pool a couple of times. 

School started today - only a half-day - but Jeremy missed it due to his doctor's appointment so his first day will be tomorrow.  He is a junior this year and just had his 17th birthday.  That is so hard to believe!  Only two more years of school.  It has been recommended that we start considering soon what Jeremy will be doing after he graduates.  This will be a big task for us and not a real pleasant one.  He would be eligible to continue high school until he turns 21 but we think it is important to him that he graduate with all his friends and classmates.  We also have a lot of legal paperwork to begin to prepare for - living trusts, guardianship, disability - things like that that we have not had to worry about before since he's been a minor.  It's a lot to try and take in and we want to make sure we "do it right".  Check back soon for another update.  Thanks to everyone who continues to follow his progress here. 

Well, Jeremy has been really slacking off these last couple of weeks since summer school has ended.  He has enjoyed just staying home and catching up on tv (game shows, mostly).  He is back in pool therapy twice a week since getting his cast off and has been doing very well.  He has begun to try and grab a ball with both hands and hold on to it, even lift it out of the water, when it floats his direction.  He also has batted at it to hit it back.  He has never really done much before with his left hand as far as trying to move it goes, so this has been pretty exciting (his left side is his weaker side).  We don't know if it's due to his recent surgery (that seems improbable) but no matter what we will continue to work on this.  You should see him when he is able to lift that ball - he smiles so big and is so proud of himself - it was wonderful to see! 

Jeremy is also gearing up for a new adventure.  He has gotten the opportunity to attend a camp for kids with special needs.  He will be leaving in just a couple of weeks for a whole week away from home and away from Mom and Dad and everyone familiar.  He seems pretty excited about going and, although we are all very nervous about this new chapter in his life, we are looking forward to it.  Hopefully all will go well with this.  We'll update more about this once he gets back.