January 6th, 2006: We had a pretty good Christmas and New Years.  Jeremy is a really big Spongebob Squarepants fan so he got a hat, pants, light, and some miscellaneous other things.  He just told us last night that he's burned out on getting Spongebob stuff.  Thank goodness that's over.

Jeremy has restarted his intense therapy which for another 2 week session.  He's been doing Hyperbaric and Suit daily so he hasn't returned to school yet.  He's also doing vital stem therapy which is where he has electrodes hooked up to his neck to strengthen his swallowing muscles.  He's working very hard but has become very upset because he doesn't feel he's making progress.  One of the reasons is that his improvements due to the hyperbaric chamber has reduced his tone.  His Baclofen medication that is supplied by his pump needs to be turned down.  That will be done next week.  He doesn't understand the meds have to be delicately balanced to allow him to control his muscles while reducing his tone. 

Jeremy misses his friends and is eager to get back to school so he can be with them again which won't be until the 16th I believe.

The autographed ball was auctioned on eBay.  The winners live in Hawaii.  I believe it was a wife that purchased the ball for her husband.  She printed him out the auction site and gave it to him for Christmas since the ball wouldn't be there on time.  I received a note from them that they received it and were very excited about winning it.  They sent their best to Jeremy as well.

That's all for now. Everyone have a good weekend - and Happy New Year!

January 13th, 2006: We will be finishing up Jeremy's session of intensive therapy tomorrow.  He has been doing hyperbaric dives and 2 1/2 - 3 hours of suit therapy every day and working very hard.  We got his Baclofen pump turned down again (second time in less than a month) so he has been able to regain some of the ground he had lost due to the lessening of tone.  He is much happier that he can stand again, but they still have not put him back on the treadmill yet.  The therapists are concerned about putting too much weight on the splints for his legs.  They were not initially intended for him to bear weight so we are going through the steps of ordering new ones.  They are also concerned about the bones below his knees starting to protrude, probably also from the weight bearing.

Some of these problems may be due to the scoliosis he has been developing as well.  This is progressing more quickly than normal due to the baclofen treatment and is not uncommon, but his is severe enough that will probably require surgery to correct.  He has an appointment with a spinal surgeon in March to discuss this.  He also just had a bone density study done to assess for osteoporosis (brittle bones) which is also a concern. 

First thing next Tuesday, Jeremy will be undergoing botox injections to his back and/or neck at the Spine Surgery Center.  Although he has had botox injections in his arms before, this time he will have to undergo anesthesia and a surgical procedure because of the location of the injections.  Please keep him in your thoughts this day.  If all goes well with this, we hope he will be returning to school again on Wednesday or Thursday.

January 23rd, 2006: Jeremy received a letter a few days back from one of his therapists that took some vacation time with her husband in Hawaii.  Her and her husband were able to visit the set of ABC's LOST and even be backstage while some shooting was going on.  They even got pictures with a few of the actors.  John Locke played by Terry O'Quinn and Sayid played by Naveen Andrews.  Looking very forward to seeing the pictures and I know Jeremy is looking forward to her being back.

Jeremy started back to school on the 19th giving him a little over a month off.  He took extended time off while doing a 3 week aggressive therapy sessions.  He was in nearly all this therapies daily for 4-5 hours.  I think he's glad to be back to school just for the rest.  Before he returned to school though he underwent a major series of Botox injections on Tuesday the 17th.  No way for me to remember all the muscles but they included some muscles in the legs, neck, and arms.  His spine has become severely out of alignment and he is scheduled to visit a spinal specialist.  After that it is likely we'll receive Botox in some of the muscles in his back as they are pulling his spinal column out of alignment. One muscle pulls so much it has gotten large and has created a lump half-way down his back. 

Jeremy just got home - it's 11:45am at the time of writing this and we have a busy afternoon ahead with hyperbaric and suit so I'll sign off quickly.  Bye..

January 29th, 2006: I decided I needed to get a disclaimer on the web after a very odd conversation I had someone stating they were going to place change jars around town for us.  We've never met the individuals and in one conversation they claimed to be friends of ours to a business for the purpose of leaving a jar.  Although I hate to discourage any collections for Jeremy's fund there is no way to confirm individuals working in this manor are on the up-and-up.  We will list on Jeremy's site any locations (and give credit to those places that participate) where fundraising is occurring. 

 


February 1st, 2006: We've learned of some generous donations recently which we would like to say thanks for.  I've added their names to the Thanks page.  We appreciate everyone's help.  I'm sure there are many who have contributed but we don't always know or hear about who they are because they send money directly to the Endearment Fund. Jeremy's Uncle Terry has a close friend named Carolyn Trilli who donated part of her bonus to Jeremy.  Thank you very much Carolyn.  We also learned of an organization called the Help You Club in Florisant, CO where Jeremy's Grandma Seales lives who donated to Jeremy as well.  Thank you all too.

Holly has spent a great deal of time in the last few weeks researching the benefits of non-fetal umbilical cord stem cells.  We have decided to give this a try.  This is going to cost nearly $10,000.  We will have to fly to San Diego where everything is performed except the actual injections which are still not allowed in the U.S.  We must cross the border into Mexico for that part of the procedure.  We spoke with many family members and friends to discuss this and get their input.  Everyone was very helpful and provided input.  We had an appointment scheduled at the end of February but there were enough questions posed we have decided to wait another couple months while family and friends help do additional research of the facility, doctors, and possibly reach out to parents of children who have had the procedure done and directly to the people that have had the procedure done. 

The family will begin fundraising again very soon. 

Uncle Terry in New York has already setup a very elaborate fund raiser which he provided some of the details to us during a phone call.  I will post more information when I receive it. 

Well it's very late and time for bed at the time of writing this.  Thanks for checking Jeremy's site.  More information to come soon.

February 11th, 2006: Happy Birthday to Jeremy's Aunt Penny.  It was actually on the 9th.
Happy Birthday to our dear friend Kim.  Her's was on the 10th.
Happy Birthday to Jeremy's Grandma Nancy.
Holly & John's Anniversary.  I've managed to fool her into keeping me around for 17 years now.
Joe & Judy's wedding was today.  Congratulations you too!!
Joe & Judy were responsible for the 'Ride for a child' Fundraiser for Jeremy last year which was one of fundraisers that was really fun.  I know they worked very hard to make it happen.  Click the photo to enlarge.     

Jeremy's Uncles in New York are creating a foundation for children with strokes.  Although Jeremy suffered a brain bleed the damage the injuries are a result of him suffering 2 or more strokes.  Please see Details in the Fundraiser section at the bottom of the main page.

A lot of news on Jeremy
In the past week Jeremy was able to stay standing (bearing his own weight) propped up against a table for 15 minutes.  After a rest he was able to do another 6 minutes. 
He is also doing squats in the pool. 

He was fitted for new leg braces because he's outgrown the ones he has and those were designed to keep his ankles bent to stretch his calves and not for weight bearing.

Jeremy was also fitted for a new wheelchair which we hope to have in about 3 months.  This one will be motorized and will be wider.  This will create some new challenges around the house.  We'll have to create a second ramp to the front door because this chair can't be tipped or 'wheelie-d' like the one we currently have.  Jeremy is able to move the chair himself with a small switch he can work with his finger.  His Dynavox will also have a mount on the chair so he can take it with him.

We are about at the end of Jeremy's Hyperbaric treatments.  Jeremy is scheduled to have his stem cell treatment in early April.  After that he is not supposed to have any Hyperbaric treatments until 6 months later. 

Thanks everyone for keeping up on Jeremy's progress.  More to come on the stem cell stuff in the next couple weeks.
 


March 1st, 2006: Terry and Chris's Dinner in New York was a big success.  There were some corporate sponsors from MTV and Sak's Fifth Ave. That noted they will participate when the foundation receives its tax exempt status. 

Jeremy missed Thursday-Tuesday of school because he has come down with a cold.  He looked and sounded just horrible.  He could hardly breath through his nose at night and when he tries to cough it isn't strong enough to dislodge what is making him cough.  I can't image the torture of not being able to blow your nose when you want to because it itches inside.  He's sounding better but isn't 100% yet.

St. Patrick's Day will mark the 2 year anniversary since Jeremy's accident.  It's hard to believe it's been 2 years since he's scored a goal or since we've simply heard him speak. 

We received a notice in the mail from the insurance company.  They are claiming some of Jeremy's therapies are not covered are trying to collect money from for what they have paid.  Wonder if in their wisdom they've ever heard of "squeezing blood from a turnip"?  This will be the next long drawn out thing that Holly will have to fight with them for. 

Please note the fundraisers at the bottom of the main page.  We are selling the rest of the silicone bracelets.  You can even purchase online if you like.

March 21st, 2006: Well, I realize it's been quite a white since the last update.  Frankly I wasn't in the mood with St. Patrick's day coming.  March 17th marks the 2 year anniversary of the day Jeremy lost consciousness at school and was taken to Children's Mercy where we learned he had a ruptured blood vessel in his head that caused irreparable damage to his brain and forever changing many of our lives.  We seemed to get through the day OK.  Luckily I was very busy at work that day so I kept my mind off of it.  Holly had the opportunity to go out with her friends to dinner and she got flowers from Kim.  Thanks Kim, that was sweet.

Plans are finalized for Jeremy's Stem Cell treatment.  We will be leaving for San Diego mid April for a few days.  My step-grandfather will be meeting up with us from Texas.  He has traveled extensively so we're a little more comfortable going with him into Tijuana so we can concentrate on Jeremy.  While we're there we are going to Sea World and if time permits the San Diego Zoo. 

Jeremy has an appointment today with the spine surgeon to determine what needs to be done for the curve that has developed over the last several months. 

We now have tickets available for sale for the Pancake Breakfast.  It's the day before Mother's Day from 8-11am so make plans to take your Mom to breakfast! 

Jeremy's Uncles continue to pursue creating a foundation based on our family's particular struggle and needs.  They are working on a foundation called the Headstrong Foundation.  I've started a place holder for it on the web until it has become official.  I haven't decided what I want it to look like so I just threw a few colors together.
 


April 3rd, 2006: Holly has been making Jewelry like crazy.  She's gotten very good at it too.  Many have been helping.  Rhonda, Penny, Kim, Nancy, and Bekkah have created some very pretty stuff.  Bracelets, Anklets, Necklaces, earrings, rings, keychains and ID badge holders have all been a big hit.  I planned on putting some on the site to sell but every piece has been unique so far and we just can't keep enough in stock.

Jeremy's trip to San Diego is coming up very soon.  We're getting anxious about it.  Jeremy has said he's nervous.  The procedure is basically like an IV drip and will take about 1/2 hour.  He's had a million of those now so I'm sure his nerves are for the unknown of going on a trip, etc.  This will be our first trip post-injury, so we are all a little nervous about it.

Pancake Breakfast fundraiser plans are coming right along.  Rhonda's son Jeremy is a photographer and took a nice picture of Jeremy to put on the flier. 

We are still waiting for a date when Jeremy will have surgery on his spine to correct his scoliosis.   We want to get it done as soon as possible, but have a waiting period between when he has his stem cell treatment and can have surgery.  Hopefully it can be done by mid-summer so he will be well-recovered by the time school starts back up. 

April 9th, 2006: Well, we're on our way.  Look for just a few pictures to be added here in a few days.  I wish I had more to say but the fact is that it's nearly midnight on Saturday and we're still packing. We're almost done but just trying to make sure we have everything we need. 

April 13th, 2006: Well I didn't get the website updated while we were gone for a reason that is dumb enough to share.  Those of you who know what a geek I am know that I usually have the toys to go with my electronic gadgets.  Rather than taking the chargers for Holly's PCS phone AND my PCS phone I took the USB cords that are much smaller that connect to my laptop to charge them.  Problem was that I forgot to bring my laptop power cord.  The battery on the laptop was about 1/2 gone before I realized what I'd done so I couldn't use my laptop anymore because what juice was left in its battery had to charge our phones.  It was able to charge both our phones about 1/2 way and for two days that's really not quite enough.  So we had limited phone usage for the last two days. 

Now, about Jeremy and the trip. 
We made it back from San Diego/Mexico for Jeremy’s umbilical cord stem cell treatment. It seemed like a whirlwind trip but we got a lot squeezed into it. After flying 4 hours to San Diego on Sunday, Jeremy was extremely tired of sitting. He can’t stretch or anything while he sits, so he was quite stiff and very ready to get to the hotel. Monday morning we were picked up by a driver that works with Dr. Ramirez and taken to Tijuana. The clinic is only a couple of blocks over the border and we got there in 15 minutes from the hotel. Since Jeremy has had reactions to several medications, they wanted to do an allergy test on him before they gave the stem cells to make sure he wouldn’t react to them and he didn’t. We brought the cells over with us from the US, so when they broke open the sealed cooler, Holly got to thaw them in her hands before they were injected. It was a very small vial, but contained 2 million cells which we hope will get to Jeremy’s brain and begin regenerating there. We were done at the clinic and on the road back to the US within an hour or so. Then it took us almost 2 hours to get back over the border. That was it…now we just wait. To make the trip a little fun for Jeremy, we took him to Sea World and had dinner with family that lived nearby.  We got a date set for his scoliosis surgery. It will be on July 24. We had to wait until at least three months post-stem cell therapy so the cells won’t go to the surgery site to regenerate. We want to make sure as many of them get to his brain as possible. Holly is looking into another type of therapy that could help his scoliosis without surgery, but since his degree of curvature got so large so quickly, it may be too late for that one. Jeremy is scheduled next week to have more botox injections. This time it will be mainly in his back. This means, again, that he may experience some decrease in strength which will probably show when sitting unassisted and trying to stand. Hopefully he won’t get as upset by this as he did last time. Jeremy’s aunt Penny has arranged to have a booth at the Pleasant Hill fair to sell the jewelry that her and Holly have been furiously making. They plan to sell pre-made jewelry and are hoping they can do some while-you-wait stuff too. This is the same jewelry that will also be for sale at the pancake fundraiser on May 13, which we are still pre-selling tickets for. Eventually we will get some of it for sale on our store, but just can’t keep enough in stock to get it out there. 

Here are a few pictures of interest.  Dinner with Jeremy's Great Grandpa Terry.  Sloppy stitched picture but gives you a little idea of the view.  Picture is with my phone so low quality.
 

April 15th, 2006: Jewelry added to the store Holly and Penny are making to raise money for Jeremy's stem cell treatment.

April 24th, 2006: Quick note: If you know anyone who is having medical insurance claims issues send them to this site and email Holly.  She has a lot of experience dealing with insurance for the last 2+ years with all sorts of medical claims issues.  There would be a lot of things that if Holly would have just let drop the insurance would not have paid.

April 28th, 2006: Jeremy has had some problems this week with vomiting. He doesn’t seem sick otherwise and hasn’t run a fever, but just has had daily vomiting and he got sent home from school twice. We also got notices from the insurance company denying coverage of equipment – a motorized wheelchair, a lift we can use to move him around (he’s getting too big for me to lift by myself), and a standing frame. The reason they give is that they are “not medically necessary”. I’m so sick of hearing those words it’s not even funny. So, of course, we’re filing an appeal.

On a better note, we did find out that the insurance is canceling their request for a refund on the hyperbaric therapy that they had already paid for. They now say even though they shouldn’t have paid, they will let the payment stand. (hooray! That was probably the easiest appeal we’ve had yet!)

Jeremy had missed a couple of weeks of swallow therapy and when he went back this week, his therapist was very impressed at how fast he was able to chew. She has a special rubber pipe she uses for him to practice chewing (it looks kind of like a dog’s chew toy) and he was really moving! He was even able to whistle a little through it, so she thought she might try bringing in a whistle next time to see how he does with that. He’s also getting pretty good at puckering up for kisses!

People are furiously helping pass out fliers and pre-sell tickets for the fundraiser, which is only a couple of weeks away. We sure appreciate all the help! We will be trying to blanket the local businesses with fliers for the next week or so and could use some more volunteers. We’re hoping to hit Raytown and Lee’s Summit pretty hard and some kids are going to go through neighborhoods and pass them out to homes as well. If anyone would like to help, you can download the flier on this website. Just let us know where you will be going so we don’t hit the same place twice. Hopefully all this hard work will be worth it and we will have a great turnout on May 13th. We would like to pre-sell as many tickets possible so we can give a tentative head count to Chris Cakes as to how many to expect, but we certainly will welcome anyone who wants to pay at the door!


May 1st, 2006: We learned that kids from Spring Valley (grade school Jeremy attended) sent home pancake fliers with all the children.  That was very nice of them to do that.  Haven't really had many pre-sales yet so concerned about the turnout.  No real way of knowing if we won't have enough or too much.  Hope to see you all there. 

May 5th, 2006: Holly and I took a class on using Jeremy's Dynavox on Wednesday.  It was a really good class too.  As computer literate as I am I could not figure out many of the things on that device.  It will play MP3s and be a TV remote.  The thing is not very intuitive.  After taking the class we learned that their are a million different ways Jeremy can use it to communicate.  It requires a lot of setup time to get working the way Jeremy would like it.  I would compare it to setting up a website.  A lot of setting up on the web admin's part just so all the user has to do is click to go from place to place.  

I've become very frustrated with whomever is getting into Jeremy's guestbook and adding non-family friendly comments.  Most of you have my information, PLEASE CALL ME ASAP when you find something inappropriate on there.  It only takes a minute to remove.  I would really hate to pull the guestbook down.  I do not have the time or the talent to go toe-to-toe with someone who is just trying to be malicious on the site.  If it becomes too big of a deal I will pull it.  Jeremy has also started receiving spam too.  You try to have a simple site and someone always has to mess with you.  I'm looking into making it a little more secure.  We'll see what happens. 

OK, done whining. Holly had a major win with the insurance company again.  They began sending notices that they were NOT going to pay for the hyperbaric treatments and wanted us to start reimbursing them.  Holly called them many times and noted that more than one person paid the claims that are charged a visit at a time.  (80 in all).  She wanted to know if they made a mistake why ALL the different claim agents made the mistake to pay rather than to deny after a couple of visits.  While they were arguing for weeks via letters requesting reimbursements and that the insurance company wasn't going to cover the charges the Hyperbaric Institute continued to receive payments from the insurance company.  The right hand doesn't know what the left hand is doing.  After everything was done the insurance company said they would not try to collect from us but they will not pay for future treatments. 

More later. 

May 7th, 2006: For those who have visited the website often or followed Jeremy's Progress for a long time the site might not be too much.  If you have suggestions to improve it let me know.  For those new to the site I think it is REALLY big.  There is 2 years worth of info here.  If you have a suggestion to improve the site please let me know.  Sometimes it's hard to see things from the user's perspective. I just keep adding stuff and the next thing I know the site is huge. Please feel free to provide suggestions! 

May 9th, 2006: I completely forgot about the pictures I took on the San Diego trip.  I'm just putting a few to look at and not a photo album like I've done in the past.
 CLICK HERE.

May 13th, 2006: The pancake breakfast was a huge success.  Thanks so much to everyone who worked so hard to make this possible and to those who participated.  The jewelry sale was also a big hit and very successful.  People have asked for private viewings of it for their friends.  We also got some good ideas on where to have mini-showings, so we need to replenish our stock of jewelry in order to get that set up. Between the breakfast, jewelry sales & donations we raised nearly $2500 to cover expenses for therapies that are not covered by insurance.  Click Here to see pictures taken at the fundraiser.

We have seen some good changes in Jeremy in the last week or so.  We actually heard him clear his throat.  It really drew our attention because he has not done that before.  Then he did it again!  When he was asked if he’s noticed any changes since his stem cell treatment about four weeks ago, he states his arms are easier to use but his legs are harder.  We’ve noticed his chewing is getting better.  He also has tried to pucker up like he’s going to give a kiss.  He can’t quite do it yet, but is very close. His swallowing is coming along too.  Jeremy also has been trying to vocalize.  Aunt Penny swears she heard him say “goose”, but nobody else heard it and he hasn’t repeated it, so….He has been working on his “s” sound and his “m” sound and mom, of course, has been trying to get him to add an “om” on the end.  He’s really trying but hasn’t had too much success yet.  It’s still pretty early to be seeing much, but of course we are looking for every little change. 

May 22nd, 2006: Go visit Jeremy's NEW Guestbook.  It's much nicer than the old.  Easier to move around through, and has search features. 

Jeremy's has been making noticeable improvements in the last couple of weeks.   I noticed a few days ago that when holding a small juice glass to Jeremy's mouth for water he started putting his lips together to stop the flow of water.  Something we have NEVER seen.  Holly mentioned that two different people told her they noticed Jeremy smiled a lot at the pancake breakfast and that his smile was much more even.  Because of his strokes Jeremy has a sideways grin but his bigger smiles are much more even than before. 

They are little things but they add up to when placed in our bucket of hope. 

Well - It's about 1pm Monday, Jeremy got home a little late from school because the bus broke down.  Time to get him ready to go to one of his therapy classes.  Take care.  It's a beautiful day outside today.
 


June 4th, 2006: I miss out on all the good stuff.  Apparently while at speech therapy while using electrodes to stimulate swallowing Jeremy was able to say YES in a very week voice. It was faint enough that both Mom and Sharon questioned each other if they heard what they thought they heard. 

Jeremy has been doing a much better job in the last couple weeks with drinking.  When someone puts a cup to his mouth and pours Jeremy often dribbles and sometimes chokes.  Lately he's been able to purse his lips together when he's got enough.  Not sure why but definitely notice his eyebrows move a lot when he does that and when he swallows. 

Another fundraiser has been put together for us.  The Pleasant Hill First Christian Church is having a benefit meal for Jeremy after their service on June 18th (Father's Day).  Pizza is being provided by Reggie Ray's Pizza.  More details will follow.  They decided on their own to help and we very much appreciate it.  Putting fundraisers together can be a chore.  More to come soon. 

June 19th, 2006: The Pleasant Hill First Christian Church had a Father's Day luncheon where free pizza was provided by Reggie Ray's Pizza.  They allowed Holly to bring jewelry and many donated to Jeremy's Endearment Fund.  We would like to send out sincerest thanks to them. We have added them to the list of people we owe thanks to.

Holly is on another mission.  Jeremy's spine has gotten so bad he really can't sit anymore.  His therapists were working on him sitting but he hasn't be able to do that for quite a while since his Scoliosis has progressed so much.  He was scheduled for surgery to have rods inserted in his back on the 24th of July.  Before we commit to such a drastic measure that is so evasive and irreversible Holly has decided that she wants to try a method of therapy called ABR that she learned about which is offered in Canada so she is making plans for a trip at the end of July.  This is an alternative treatment so as usual not covered by insurance.  She will be gone just over a week so we have decided that I will not go to save on money and on my vacation.  This will allow me to help if and when Holly needs time off or is ill so I can help then.  She realized however that it would be impossible for her to go alone and deal with Jeremy, the luggage and miscellaneous medical equipment that would have to go.  It would be impossible for any one person to go alone.  So....  Her brother Terry, from New York has decided that he will go to help.  Holly and Jeremy will enjoy his company.  There will be more on this as time draws nearer.  Holly has more details that I will provide later.

As we fundraise a constant question comes up that even close family members aren't always aware of.  Where does all the money go?  Heck, I couldn't answer that question 5 years ago when we both had jobs and we were still broke.  In the case of Jeremy however we would like to provide everyone that information so not only do they know where it goes but can appreciate all that Jeremy has done and continues to do to get just pieces of his life back.  coming soon.

June 28th, 2006: There is a new video that spent a couple of days creating.  Just a quick compilation of pictures of Jeremy.  It's just a small reminder of where our journey started and what we're working so hard to overcome.  Click for video page
 


July 1st, 2006: The page for "Where the Money Goes" has been added.  It's not complete but close. Click to view.

July 5th, 2006: Jeremy and the rest of the family had a wonderful 4th with Kim and her family.  This was the second time we visited them for the 4th and Jeremy was noticeably better at dealing with the noise of the fireworks.  Last year he was so disturbed by the noise that we had to put him in the van to suppress as much of the sound as we could.  This year firecrackers were still too loud, and he didn't care for the rockets that took off screaming but most of the other fireworks he was fine with.  Some of the bigger stuff that made a boom when it was shot in the air made him jump but he was still able to put up with the sounds and had a great time.

Grandma Seales is due to be in town in a couple of days.  She and Aunt Penny will be watching Jeremy while we host the annual canoe trip again.  Since Holly and I are busy getting ready for the trip I probably won't post any updates for at least a week. 

Hope everyone had a safe

July 16th, 2006: We've been very busy.  Grandma Seales and Aunt Penny watched over Jeremy for 3 days while the rest of the family hosted our 9th annual canoe trip.  We had excellent weather.  Jeremy's dad started a new job which will require more hours but hopefully will allow for the flexibility of working from home more. 

Jeremy's Uncle Terry will be in town this Wednesday and Grandma Seales will be returning.  Jeremy's Cousin Cory will be appearing in a play. Then Uncle Terry will be accompanying Holly to Montreal where they will be for a week for ABR Therapy to hopefully correct Jeremy's spinal curvature without having rods surgically put in his back. 

That's all for now.  Thanks to all for keeping up on Jeremy's progress.

July 18th, 2006: And you thought your Monday's were bad.  Jeremy said that he had a 'great day' yesterday but after Holly got home from her errands she had a completely different story to tell.  Jeremy has a new wheelchair that has not come home yet for couple of reasons.  One is that it isn't completely working right yet.  It's an electric chair with a very sensitive switch that Jeremy can work with slight movements of his finger.  The chair weighs approximately 300 lbs.  I reminded Holly that one key things that needed to be tested was how it would fit into the van.  On the day I was able to see it the tilt wouldn't work so after being hoisted up on the ramp we couldn't get it into the van because it was too tall.  Well, for the last few times Jeremy has been at therapy and practiced using the chair the tilt worked.  Monday, Holly and Corey (his therapist) tried out getting him into the van.  How to turn it to face forward and lock it down.  Holly said Jeremy's head is so close to the roof that you couldn't get a finger in between his head and the ceiling of the van.  After they were done and ready to take him out the tilt would no longer work.  They couldn't get Jeremy out of the van.  Remember it was over 100 degrees on Monday.  They couldn't slide him out of the chair because he's too big and it's awkward in that tight area.  They tried everything they could think of to try to get the chair's switch to respond.  Another mother was bringing out wet washcloths to keep Jeremy cool as he was dripping with sweat while they tried everything they could think of.  They could not tilt the entire chair as it is equipped with wheelie bars that are not adjustable and it weighs 400+ lbs. with Jeremy in it.  Eventually they thought of leaning him forward as far as possible and the top of the wheelchair barely cleared.  Holly said that Corey called the wheelchair person and left a message for them to come repair it immediately.

Just a reminder - Holly and Jeremy leave for Canada Sunday.  You might leave them messages on Jeremy's guestbook!

July 29th, 2006: Holly and Jeremy are scheduled to arrive back in Kansas City Sunday afternoon.  Holly said that so far the therapy training has gone very well.  She noted that the flight to Montreal seemed to be much easier on Jeremy than the flight to San Diego.  Because it was broke up into two sections and I think overall it wasn't as long.

It's been busy around the house.  Among other things I've worked to repair the ramp that we had in front of the house.  I've also added a section from the top step to the edge of the door which will be needed for the electric chair to enter.  The bottom section of ramp will have to be replaced.  After two years the wood is starting to breakdown.  I repainted it so it would at least look nicer.  It's too steep for the electric chair so once we get it home we'll have to work on that.  Anyone who has good wood working skills to provide some ideas would be helpful. 

I'll add more in a couple days.  Hopefully Holly will have some information to share and I can add a few pictures of their trip.   
 


August 7th, 2006: Jeremy's 14th Birthday is the 15th!!  We are so unprepared.  It's coming up fast.  We really don't have any plans but you might consider giving him a 'shoot-out' in his guestbook.

I haven't had a chance to talk to Will or Carmen about the Soccer Camp.  I did learn from Jen Cooper (She put a comment in Jeremy's guestbook) that there was an article in the Raytown Post. I haven't personally seen it yet but I know Holly got a copy.  I will post it on the site when I get a chance.  I would really like to thank Will and Carmen and of course those who signed up.  It is very kind of Will to continue to think of us and help while he his life becomes extremely busy as he is now campaigning for reelection. 

Will Kraus.com

We would like to thank the Wade family for providing us with a temporary ramp.  This will buy me some time until I can extend the current one we have.  Actually, the way their ramp is built is a better design than what we have so when I add on to the one we have I'll have a better idea for creating it.

I'm currently building a small therapy table for the ABR therapy that Holly took Jeremy to Canada to learn how to do.  She as only been able to do some of the therapy until I can get the table completed. 

Well, it was a very busy and productive weekend.  I will put more about Jeremy's trip soon. 

August 21st, 2006: Lots of updates because I've been busy - and lazy. 

Jeremy started school today. We'll be meeting with the teachers to lengthen the hours that he's there but none of us were really prepared for that so it won't happen for a couple of weeks.  This is Jeremy's last year of middle school.  Next year he'll be in high school.  This is his brother John's senior year.

Will Kraus held a soccer camp just a few weeks ago that I talked about.  It was in the Raytown Post.  If you would like to read it you can find it here.

(Holly added)
We had a great week in Montreal with Jeremy’s Uncle Terry and learned several of the ABR exercises. Basically, the first few months we will be working on improving volume in the areas where his body has begun to collapse. We will be spending one hour per day per exercise, so he will be getting a minimum of 21 hours per week of this therapy. We got a video of all the exercises we will be doing showing great detail of Jeremy’s positioning and the instructors are very picky about how I will be positioned while doing the exercises since I will be in the same position for so long and they don’t want it to be fatiguing or painful. In three months, we will do another evaluation video to send in so they can compare it to the one we just did to see what difference the exercises have made. We also were able to meet lots of wonderful people who work at the ABR center as well as those who were there with their children for training as well. All the parents we met were very inspirational - so dedicated to helping their very special kids. Hello to Andrew, Aiden, Steven, and Shelton. We went to the pier and to the Olympic stadium, which kind of looks like half of the St. Louis arch. Check out the photos. Most of the people there speak French, which was kind of weird at first but we got used to it after a while. The funniest thing there was the KFC – it’s actually called PFK there, but the logo is the same. Jeremy also had a swallow study done before we left to evaluate whether he can graduate up to drinking liquids. He was not supposed to have anything too watery before because his swallow was so delayed and he would wind up inhaling the liquid into his lungs, which could cause pneumonia. Since he has been doing his VitalStim therapy, his swallowing has improved a lot. He still has trouble closing his lips around the glass, but it’s improving. John even tried him with a straw a few days ago and he actually was able to suck a little bit through it – he’s never been able to before! School starts the 21st and will be Jeremy’s last year in middle school. We haven’t yet had a meeting to determine exactly how long he will be in school this year but we’re hoping to extend his day a little bit.
 


September 4th, 2006: Well it's Labor Day but MORE IMPORTANTLY, It's Holly's Birthday. XOXOXO

So Jeremy's therapist has begun having him chew the gum of a Blowpop. Just a few days ago he even chewed it off the stick. Jeremy has been chewing a little for a while but it takes him some time and he doesn't chew very often. We'll put part of a chip in his mouth and he'll crunch a couple of times. Then it's usually softened up enough to just swallow.

Jeremy also started Bio Feedback Therapy which measures amount of muscle used and shows on a chart. This gives Jeremy the ability to see which muscles are being fired so that he can tell when he is firing the right ones.

Holly has started Jeremy on Manual Therapy which is a stretching therapy to complement the first part of the ABR training they went to Canada for. I viewed a very lengthy tape that the doctor did with Holly and Jeremy to go over what he sees happening to Jeremy's body and what they are go to work on to correct. One thing that was noted was they will work on mobility which may cause Jeremy to become more floppy. Then they will work on strengthening those areas.

And finally, we've brought Jeremy's electric wheelchair home. It's very neat and cool but is presenting a couple huge problems. Besides the fact that we're going to beat the heck out of the walls and doorways, the chair is bigger in a way that makes it extremely difficult to put him in it. In fact I honestly do not see how Holly can put him in it by herself. Jeremy's ability to stand with assistance and pivot into the chair isn't as good as it used to be. Then getting behind this chair to pull him back in the seat is more difficult because the chair is bulkier so he's farther away. Also, the chair weighs 400+ pounds with Jeremy in it and is very difficult to get into the van. There is no lifting and scooting with this thing. All new challenges that I'm sure we'll solve as we have some time for 'trial and error'.


October 9th, 2006: Sorry I haven’t posted anything in a while, so I’m going to try and catch you up on things:

We’ve all still been adjusting to the new school/therapy schedules. I had thought we’d have more time daily to get his ABR therapy in, but Jeremy’s school day got extended by two hours and that doesn’t leave us any more time that we had before!! I hate to take him off any of the other therapies he is still in because I think they are important to keep strengthening his muscles. Anyway, the last 3-4 weeks, we had noticed and the school folks also had noticed that Jeremy was having a lot of difficulty with his head dropping to the left – so badly that he would be falling off the headrest of his chair. In the past week or so, it has significantly improved. He looks like he is sitting much straighter. We were told when we were in Canada for ABR training that a lot of the changes we would see in Jeremy would look like he was getting worse before he started to look better and I’m hoping that is what we were seeing.

Jeremy is using his new motorized wheelchair at school this year, and so far he has not had a lot of luck with driving it. His driving hand tends to pull to the left, which results in him turning the chair to the left in a circle so he is still being driven most of the time by either one of us or his aide at school. This is a little disappointing but we’re still hoping it improves as he practices. 

In speech/swallow therapy, he has made a lot of progress in the last few weeks. He is able to chew gum (on a stick so he doesn’t swallow it) and has been working on holding a straw in his mouth for a few seconds at a time. His mouth muscles have gotten so strong that I’ve asked his therapist if there would be a reason that he still has not been able to make much “voice” sound. We hear it periodically but most of the time it is more of a nasally-type hum. I have asked if there may be a connection between the lack of ability to control his vocal cords to the Baclofen, which is the medication in his pump that help relieve the tone in his muscles. She didn’t know of any but was going to ask a couple of doctors if they had ever heard of this. She did say his lack of vocalizing is somewhat puzzling due to the fact that he has such good control now of those mouth muscles and the area of his brain that controls speech and understanding was not in the area that was injured. He also doesn’t appear to have any vocal cord damage, so –again – he is a bit out of the ordinary in what they would predicted his injury would be. Gee – we haven’t heard that before!!

The BIG news is that we got a note from the school stating that he was having such good movement in his right hand going to his mouth that they gave him a spoon and tried to see if he could feed himself a bite AND HE DID!! We have tried it a couple times at home and didn’t have as much luck with it.  His Aunt Penny brought a chocolate covered ice-cream bar for him to eat. He’s slow at it and the ice cream melted before he could eat it all, but he’s definitely trying very hard and hopefully will be able to do that on a more routine basis soon!! He also was able to write his name on his MagnaDoodle with a little bit of help from Kim and her kids. His OT at school has said she will bring her MagnaDoodle in so she can try that with him there too. We also have been able to again turn down the dosage of his Baclofen pump. His dose now is down to 375 per day from a high of 600 per day last August. We have been steadily turning it down since he did his hyperbaric oxygen treatments (last August!!). We are hoping to be able to do another session of HBOT treatment sometime in the future to help to further reduce (and eventually stop) the need for the Baclofen.

Finally, the contractors came this morning to start working on making the bathroom handicapped-accessible. They will be removing the tub and installing a large shower area, taking out the vanity and replacing the sink and toilet with handicapped accessible ones, and widening the door so we can maneuver Jeremy’s wheelchair in and out of the hallway. It should be finished in a week or two and we are VERY excited about this!!


October 14th, 2006: Very exciting news!  Jeremy seems to be a progress spurt again.  At speech therapy they do a lot of work with eating different types of food to work on chewing, tongue movement and swallowing.  Jeremy has been working on moving his right hand up to his mouth and we already shared that Jeremy was able to feed himself some mashed potatoes and later ice-cream.  While at therapy he raised his hand to his mouth 61 times!  More important than us being happy about this improvement is that Jeremy is happy about it because he continues to struggle with depression especially when he feels he's not getting better.  We're moving in a positive direction again.

 


November 4th, 2006: (Update from Holly) Jeremy will be getting evaluated at the Integrated Pain Management Clinic at Children’s Mercy. He has been complaining a lot about pain in his neck, which is caused by the curvature in his spine. They do lots of types of therapies there including massage and acupuncture, as well as relaxation methods to help cope with the pain.

He has had a very hard time dealing with his disability and has lots of anger issues about this. We started seeing a psychologist to help us help him cope with it. He is unable to let go of the anger and it’s just causing him to be more depressed. We have just started this and it’s taken a few weeks to get the communication problems bridged, but the man he is seeing is doing great dealing with Jeremy and he likes him a lot. He has already given us some ideas on how to start getting past the anger and I think this is going to be a good thing for him.

Jeremy has been able to close his lips around and even blow air through a straw. He is now working on chewing those orange circus peanut candies at therapy. The therapist says they are the perfect consistency for him to practice his chewing. I didn’t have any idea what she was talking about (those candies) but apparently they used to be a very popular type of candy. And we’re still working on those kiss puckers! He saw the dentist last week and they were extremely impressed with how well he was able to open his mouth for the cleaning. On looking back at his first visit (Jan ’05) he still had his jaw pretty locked down and they weren’t even able to really do a cleaning at that point because of this.

Jeremy has begun having one foot become very, very cold on occasion. It doesn’t seem to be a loss in circulation or due to positioning. We saw the orthopedist last week and asked him about it. He says he has seen this before, but it’s usually due to the brain trying to find a different way to get oxygen to a broken or crushed limb. I was actually kind of excited about this answer, because I am hoping this means the stem cells are beginning to help his brain begin to re-wire itself. I have left a message with the doctor down in San Diego asking if this is common after SCT and am still waiting for a response.

We also had teacher conferences last week and Jeremy got a glowing report from his teachers. He has a great para this year and he is getting a lot of his homework done during his study hall class with her. We are very relieved about this because last year we had a very hard time helping him with his homework, especially math. He scored pretty highly on his reading level tests. He got a score 1369 out of a possible 1600.

Unfortunately, we are afraid Jeremy may be getting a recurrence of his trigger finger, which he had surgery on last year. He has begun complaining of it being painful to straighten his fingers on his left had, especially when his wrist is straight, so he will be getting evaluated for this again.

Finally, we are working on getting a gentleman to come to the school and speak on brain injuries. He speaks through a brain injury awareness organization called Think First, but we are trying to get a specific speaker that I have been speaking with on a periodic basis with a one-on-one peer support group. He is a brain injury survivor himself and had difficulty regaining his speech, so I’m really hoping this can work out. I think it would be beneficial for the kids to hear about brain injury issues from someone who has been there.

(Update from John) First - Very sorry about it taking so long to update the sight.  If you didn't notice I put a date just below the button on the most recent update so you can more easily see if it's changed since you last looked.

The bathroom is almost complete!  There are a few little things than need to be taken care of but we're about 95% there.  I've added pictures of before and after but here is basically what they did:

We still have to paint and we'll probably need to add some lighting where the shower goes.  We also need to get a shower curtain which they installed the rod on the ceiling for.

All sorts of little problems popped up while renovating.  One weird one was (you might note in the pictures) when you enter the room and both doors open into the bathroom there is no place for a light switch unless you really completely enter the room.  So, we chose to place the switch on the complete opposite side of the room and install a motion sensor.  Now we have to make sure the bathroom doors are almost completely shut or walking down the hall kicks the light on. 

Well, with this novel there probably won't be an update for a week or so.  We've been very busy with other home repairs that I have put off.  Holly has asked for more therapy videos on the site so I'll try to get those on soon.  Until then thanks for checking up on Jeremy's progress.


November 21st, 2006: Update on the bathroom; we're still not quite done with it yet.  There has been an issue with the shower that Strickland is addressing now.  We are still eagerly awaiting the opportunity to use the shower.  We have been using the rest of the bathroom.  I would like to point out that the construction company doing the work is Strickland Construction.  This is the same company that helped us with Christmas in 2004 the year Jeremy was injured when we were facing many immediate financial issues as Holly quit her job to stay home with Jeremy.  They have been very nice to keep the costs down on this project and filled out a lot of necessary paperwork to have some of the costs taken care of by other means.  We would like to thank them yet again for all their help!

You have got to see this new video of Jeremy at pool therapy.  The purpose of pool therapy again is for him to work on movements (including walking) in a more weightless environment so he doesn't have to fight gravity.  Jeremy's Aunt Penny was just shooting quick video with a digital snap shot camera.  Note he's moving his legs forward on his own.  The therapist is holding him up and leaning from one side to another.

We're looking to do a couple fun winter events which will help raise money for Jeremy's Endearment fund.  A friend has recommended a number of times that a bowling thing would be fun so we're looking to get some ideas for that.
ALSO - Jeremy's Aunt Penny told us about a guy who will help host a Texas Hold'em Poker tournament to raise money.  Their high school choir (I think) is doing it.  We need ideas on WHERE we could do this.  Some place large enough for 100+ people.  You learn to play Texas Hold'em and have fun doing it, but rather than gambling you pay a fee to play and at the end win prizes. 

We hope you all have a wonderful Thanksgiving holiday. 
Through all the challenges our family has endured in the past couple years we want to thank you all for your love and support.  We are truly thankful to know so many wonderful and caring people. 

 


December 1st, 2006: Jeremy is lucky to have two very nice men pick him up at the bus stop every weekday morning.  Steve is the assistant that helps the driver get him and other handicapped children on the bus every morning.  Steve told us Wednesday that Friday would be his last day.  Unfortunately, school was out Thursday and Friday so we didn't get to say goodbye.  We wish him all the best. 

Holly will be taking Jeremy to his ABR checkup appointment.  For the checkup they only have to go to Chicago and not all the way to Montreal.  They will be leaving December 6th and back by the 12th.  Hopefully the weather will cooperate as they will be driving.  More later. 


December 7th, 2006: Remembering the 65th year since the attack on Pearl Harbor.
Well Holly and Jeremy are still going to Chicago but not in the van.  It broke down at Children's Mercy Tuesday night after one of Jeremy's appointments.  Very coincidentally Holly's brother just the night before was worried about the long drive and discussed with Holly about looking into getting plane tickets for her.  At first we weren't keen on the idea but it is so difficult to travel with Jeremy getting him on and off the plane and checking his wheelchair.  Then at the other end of the trip a special vehicle has to be rented to transport them.  Holly's dad is going with them.  Our oldest son rarely gets our attention and has some important debate activity during the time of Jeremy's appointments.  So I will stay behind for that.  This trip is for the doctors to review the therapies that Holly was taught to do when she was in Canada.  They will reevaluate his body's posture and provide new therapies. 

We're looking forward to the holidays as family members come to town and we all spend more time together.  You may find it interesting that holidays are actually joyful to us.  A lot of times holidays become more difficult on families with tragedy and this was the case for us as well but what we have noticed is that Jeremy likes the interaction.  It is difficult for us to give him constant attention or carry on a lot of discussions.  Anyone who has spent any amount of time communicating with Jeremy can tell you it can be draining.  When the family comes together others who haven't been drained bring a fresh eagerness to communicate with him.


December 16th, 2006: Jeremy had Botox injections again to relax the muscles in his arms and his back.  For those who aren't familiar Jeremy has undergone this procedure many times now.  Since his muscles are often tensed up it causes pain because he cannot relax them and he's difficult to move around because he's so stiff.  This was the first time it's been done in his back.  Hopefully this will make him much more comfortable as his back has been getting more and more out of alignment and we believe a lot of it is due to his muscles constantly pulling on his spine unevenly. 

Very interesting story.  Rather than just telling you what Jeremy did I'll tell you the 60 second story that leads up to it.  Holly has been playing a lot of crossword puzzles lately.  The other evening Jeremy was in my chair in the living room, Holly on the couch, and I was putting a movie in the DVD player when Holly asked, "What is a 1975 Burt Reynolds movie?".  Not knowing my years very well I blurted out, "Smokey and the Bandit."  She said it only had six letters in it and something about an H.  I said, "Hooper".  Then she preceded to give me the list of letters that were jumbled.  There was an E and a U; H and a T; an S and an L.  I could NOT picture that in my head so I went to her to see the jumble.  Neither of us was getting it and then Jeremy started laughing at us.  I Looked and him and asked what was funny and then asked, "Do you know the answer?"  He motioned that he did and we began spelling with him.  He started with HUS and we realized it was HUSTLE!  We were very impressed that Jeremy was able to put the word together by just hearing the letters rather than being able to see them.  We thought that was very cool and worth sharing.  It just points out even more that Jeremy's intellect is still very intact regardless of his body's condition.  We also thought it was very funny that he was laughing at us for not being able to get it.  He'll be old some day too.

Well, it's going to start getting very busy around here as family starts arriving next week.  That should be fun and Jeremy will enjoy it so I'm not sure if there will be time for updates until after that.  We hope you all have a wonder Holiday season! 
 


December 29th, 2006: We had a wonderful Christmas as Jeremy's Uncle Terry and Grandma and Grandpa Seales came to town.  Grandma and Grandpa barely made it as they live a couple hours from Denver.  Many of the roads were closed and it added a couple more hours to their normally 10 hour drive. 

While the family was in town we had a separate meeting not holiday related to discuss what has been going on with Jeremy.  Holly continues to do everything she can for him but because she takes care of all his medical appointments etc. she is really the one that makes all the decisions about what comes next for him.  We got a lot of good feedback from the family.  I don't have details to provide as some decisions haven't been made.

One of the main things that has weighed heavily on us is that Jeremy just hasn't gotten as far as we'd hoped in nearly 3 years.  He's just a few months from starting high school.  It's time to start putting more emphasis on working with the abilities he has then trying to "cure" him.  We haven't lost hope by any means and Jeremy still makes progress from time to time but we need to start planning for his future as he is now.  He continues to get bigger while we continue to get older and the two don't really mix. 

Jeremy made out like a bandit for Christmas but most importantly he enjoyed all the interaction with the family. 

It's time for another fundraiser and this one will be the best one yet!  We're working with PokerKnightsKC.com to host a couple of poker tournaments.  The best part is if you don't know how to play they will teach you and in the process the money goes to Jeremy's fund.  In the past beginners have made it to the final table!  It's not gambling.  You pay a fee to play which includes all your chips and then play to win prizes.  It'll be a blast, especially while it's cold out.  Details will be coming soon.