Jeremy's Blog

Hey everyone!!

I finally got finished with 13 years of school and I am super excited.  Now I am looking forward to Camp Barnabas in about 3 weeks.  This is my third year and I hope to meet some new friends, old friends and CIAs.  Everyone is so great down there!

It's been a while since I've updated my blog.  Sorry to all of you.  I had a good Christmas. My grandma came to visit.  I've had a great new year this far.  I had surgery to fix my pump catheter the first part of January.  I'm rebounding from that.  We've had so many snow days since the first of the year, but as a senior we don't have to make those up (there are perks to being a senior!  haha)  Valentine's Day is here and I am in love with my Lindsey because she has always been there for me ever since I got back in school.  Happy Valentine's Day to her. 

Also - the answer to the previous entry's question about what is the longest word?  Smiles.  Because there is a MILE between the first and last letters!!

(Mom's note:  Jeremy now has a facebook account and would love to be your friend!)

Happy New Year!!  Do any of my fans know what the answer to my favorite trick question is? Question is:  What is the longest word in the dictionary?   I love the fact that this is my last year of school - period.  And I hope that everyone who comes to my home will continue to do so.  And I also want to wish you all a very happy life!  Because I most likely won't be able to speak to all of you before May when I graduate.

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...