More Special Knight News

Just a brief update on fundraising for Emma's Special Knight Project.  Emma's mom, Heather, spoke with the principal of our school about raising funds.  Basically, each school determines the amount of fundraisers they can have during a given school year.  They don't want to constantly bombard the parents with more and more fundraisers.  I understand this, of course, as a parent.  Unfortunately, our school already has all of it's allotted fundraisers accounted for, so we are unable to raise any more money as a school.  However we are able to continue to raise money privately.  So that is what we are doing.

Heather also spoke with a lady from Be an Angel last week and she seems very eager to help us.  Hopefully that will get us to where we need to be.

The good news is that we have already raised over $5,000.  I am blown away by that amount and by the generosity of everyone who has supported us.  You all will never truly know how much it means to us.  Tommy, John Thomas and I want to say Thank you, Thank you from the bottom of our hearts.  And I know that Heather and Emma echo that sentiment.

Because we cannot fundraise at school, it is so very important that we continue to get the word out.  The wider we share this project, the better chance we have to meet our goal.  When you go to the link, Heather has added some updates and there is even a picture in the gallery of the structure we are trying to purchase.  I think it's a great picture of how much fun it can be.  And just in case that picture isn't enough, here is a video of a group of kids enjoying their time on it.

This project means so much to John, Emma and the rest of the Special Buddies at Shafer.  I cannot even describe the connection each of the buddies have made.  So to be able to do something so much fun like this together, would be awesome.  And here is the cool thing.  We have 19 life skills kids and each kid has 2 buddies.  So that is about 57 total kids that are involved in the program.  However, there are even more kids that would have loved to be a Special Buddy, but we just didn't have the space for them.  So having playground equipment they can all play on together is a way for those other kids to spend time with our life skills kids and will help bring the entire school even closer together.

Thank you again for your support, and please help us to spread the word far and wide.


http://www.youcaring.com/other/emma-s-special-knight-project/105598

Special Knight Update

I wanted to give you all an update on Emma's Special Knight Project.  The good news is that since posting her fundraising page on Facebook just 5 days ago, she has raised $900.  That's incredible!!!!  Emma and her mom as well as Tommy and I are extremely thankful to those of you who have graciously given money to help us get wheelchair accessible playground equipment for our school.  You will never know how much your generosity has meant to all of us.

On Wednesday, I spoke with a sales rep for a company that sells this equipment.  Now granted, this is just one bid, but it was a lot more than I was expecting.  The price of just the structure alone is $20,000.  And then we have to add the cost of shipping, and installation as well as whatever kind of safety surface we have to put around the equipment.  So we are looking at a minimum of $25,000 to purchase and install this structure.  That means, we need a lot more help.

Emma's mom and I plan to meet with our principal soon to discuss with her some possible fundraising ideas that we can do at school.  Also, Ms. Lindner spoke with a lady yesterday from an organization called Be An Angel.  She said the lady was extremely helpful and she wants to help us.  She has to present to the board of course, and it could take 30 days to get an answer, since the board only meets once a month on this type of thing.  But if they approve, they will be willing to help us fundraise, and possibly donate some of the money to us.  We are excited for this possibility.  We are both itching to get going on whatever fundraising project we can.  We want to see this equipment on our playground, if not by the end of school this year, then by the start of school next year.

I have one last thing to ask of you all.  If you don't mind, please copy the below link and post it on your Facebook or Twitter page.  You can even go to the link and use the Facebook or Twitter button to share directly from there.  We have raised $900 in 5 days just from sharing on Facebook.  The more people that know, the more money we will be able to raise.  Thanks to everyone who has supported us.  These kids deserve to have a place to play just like everyone else.


http://www.youcaring.com/other/emma-s-special-knight-project/105598

Special Knight Project

It's been a while since I have posted anything.  There are many things I could update you on, but today I want to focus on a special project that is very near to my heart.  Here is a little background on how this project came to be.

You may remember a blog I wrote a while back about a little girl we met while eating out with friends.  If you don't, let me refresh your memory.  While having dinner at one of our local favorite Mexican food joints one night, a young girl approached our table and began talking to John.  It was clear that she knew John.  Her mom then walked up to introduce herself.  It turned out that the girl, Emma, was a student at Shafer Elementary and was in John's 2nd grade class.  Her mom then told us a story that melted all of our hearts.  The school was having a contest for someone to draw a picture of a Knight (the school's mascot) and the winning picture would be on the cover of the year book.  Emma came home and told her mom that she thinks sometimes Knights can be in wheelchairs so that is what she drew.  She submitted her picture of a Knight in a wheelchair and she titled her drawing "John".  Her picture didn't make the cover, but it did make it inside of the year book.  So I mentioned to Emma that when the new school year started, she should join Special Buddies.

Special Buddies is a program that pairs special needs students with typically developing students as buddies.  The program is aimed to help students celebrate everyone's differences and to teach students that just because they are different on the outside, they are all still the same on the inside.

Emma joined Special Buddies this year and she is one of John's buddies.  But that little girl was just beginning to impress me with her very kind and generous heart.

As the Special Buddies Parent Liaison at Fred and Patti Shafer Elementary School in Katy, Texas, I threw out the idea to our sponsor that we should try and get a wheel chair swing for our playground.  It would be nice to have a piece of equipment that our students in wheelchairs could enjoy.  You see, at Shafer, we have 19 life skills students, and 5 of those students are in wheelchairs.  That means that 5 of those students go out to recess with their class every day and have to sit on the sidelines and watch their friends play because there is no wheelchair accessible equipment for them.  So in my first contact with the Special Buddies parents, I outlined the events we were planning for the year and some special projects we wanted to work towards.  One of those projects was the wheelchair swing.  I soon heard from Emma's mom that Emma was taking it upon herself to get some inclusive equipment installed on our playground.  She also was taking the initiative to raise funds for this.  If you have ever priced anything that is labeled "special needs" then you know just how expensive these things can be.  So it's going to be no small feat to raise the amount of funds needed not only to purchase the equipment, but also to pay for the installation.

Since this project started, we have decided instead of just a wheelchair swing, we wanted to get something called a Sway Fun Glider.  This is what it looks like:

As you can see, it is a large structure that would be inclusive for kids of all abilities.  You could actually fit two wheelchairs on the structure along with other kids sitting on the benches.  And you can have more kids standing around the outside helping to make it rock.  We don't have an exact price on this equipment, but our estimate is that it will cost between $10,000 and $20,000 for the equipment and the installation.  As of today, Emma, on her own, has raised almost $3000 towards this project.  Also on Emma's agenda is to attend a school board meeting and try to encourage the board to install inclusive playground equipment at all new campuses.  What an amazing young girl she is.  Like I said, she has a very kind and generous heart.

If you feel so inclined, you can help Emma reach her goal so that all of her friends at school can enjoy recess.  As it is now, the kids that are in wheelchairs can only sit on the sidelines and watch the other kids play.  They don't get to join in on the fun with them.  This is not okay with Emma she wants to change this.  To donate to Emma's Special Knight Project, visit the following link:

www.youcaring.com/emmacares

The link includes details of the fund raiser as well as a cute picture of John and his two buddies, Emma and Charlie.  If you are unable to contribute to this fund, then I ask that you pass along our information to any of your friends whom you think might be able to help. You can share our link on Twitter, Facebook or by email.  It would be great to see the faces of the kids as they get to enjoy this equipment and participate in recess for the first time.

Health Update

It's been quite a while since I blogged.  After our wild and crazy summer, I guess I just needed some time to decompress.  There are many things I need to catch you all up on, but today, as I sit at the Honda Dealership waiting for my car, I thought I would write about how I've been feeling since my procedure this summer.

The answer to this is, I'm feeling quite well.  We hoped that the ablation would have gotten rid of all of my funny heart beats.  When I woke up from the procedure, it was evident that had not happened.  But there was still some thought that maybe my heart was just irritated from the procedure and after it had time to heal, the funny beats would settle down.  Now 5 months after, it is quite apparent that is not going to happen either.  I still feel those funny beats pretty much every day, usually between the hours of 5 - 8pm.  However, they are considerably less than what I was experiencing before.

The best part is that I'm on so much less medication.  Yes, I'm still taking medication to control what I am having, but it is considerably less than what I was on.  In fact, when any doctor heard about the amount I was taking, they all responded with "I've never known anyone that was on that much of that drug."  The result of being on less is that I feel so much better than before.  I guess I never realized that I felt that bad.  I have a greater amount of energy each day.  I'm still not a morning person, but it's not quite as hard to get up when my alarm goes off, most days anyway.  I don't feel the need to lay down and take a nap every day like before.  I can exercise and actually get my heart rate up above 100.  And after exercising, I don't feel so run down for the rest of the day.  I feel healthier and better equipped to make it through each day.

Now lets not get crazy.  I'm not going to go out and start training for a marathon tomorrow.  That task will never be on my list of things to do.  I think my doctor would agree with me on that.  I know my body pretty well and I know when to push myself and when to back off.  The lazy side of me tends to lean towards the backing off, but I guess it's better to be safe than sorry.

So I guess all in all, my little trip to Ohio this summer turned out to be quite effective.  So what if we didn't get rid of all of my funny beats.  I have greatly improved my quality of life.  I am so thankful that I had an option to do this.  I'm thankful for a doctor who always tries to make life easier and better for me.  Taking care of my family is the most important thing I do and having the chance to do this for a long time means the world to me.  There may be more trips to Ohio in my future.

Super Place Camp

Super Place Camp is one of our favorite weeks of the summer.  It is a day camp for children with special needs.  Each camper is paired up with 1 or 2 buddies that hang out with him for the whole week.  John began attending when he was 4, so this was our 4^th year to be a part of it.  There are 6 churches, all within the same part of town, that sponsor this camp and each year, it is held at a different church.  This year was special because it was at our church.

I was a little worried whether or not he would be able to attend because just the week before, he spent 3 nights in the hospital.  We were so happy that he bounced back so quickly and was well enough to attend.  He loves his time there.  This year’s buddy was great with John.  She was so sweet and so good with him.  Every day when I picked him up, he seemed to be having a great time with her.

This year was also special because his new buddy from horse therapy got to go too.  One of his friends from his old school was also there.  It was nice for him to be able to see those friends each day, and it was nice for mommy to be able to spend time during the week with the other mommies.

While John is in camp, I don’t like to drive all the way back home.  So I just hang out in the area for a few hours until it’s time to pick him up.  There is a nice shopping center nearby, so that’s usually where I spend my time.  I spent time at Starbucks almost everyday.  Free WiFi makes it a convenient place to hang out for a while.  I also spent a little time at Barnes and Noble.  They have the same kind of café and free WiFi set up.  Plus they have plenty to read.  I did a little shopping while I was there, and I got to have lunch a few times with the other mommies.  It was a nice break for me, although being away from home all morning gave me no time to do anything in my house.

The highlight of the week for Tommy and I, actually wasn’t something that happened during that week.  In fact, it didn’t even happen this year.  It was something from Super Place Camp 2011.  The director of our Special Needs class at Tallowood, sent me a video that she was just shown.  The video was taken in 2011 at Super Place Camp.  It was compiled of pictures of the campers and the activities they participated in during the week.  But the best part for us was the beginning and the end.  I’ll include the video below, so you can see what we liked so much about it.

Super Place Camp 2011

Now we have a week and a half left of summer before school starts.  Summer was such a blur, that I feel like we didn’t do much that was fun.  Most years I am more than ready for him to go back to school.  But this year, I don’t feel ready.  I feel like we didn’t get time to really enjoy our summer.  Between my surgery, John’s therapy, John’s sickness and camp, there wasn’t much time to do fun stuff.  Next week will be a more relaxed week, free of appointments.  So we will try to make the most of our last week before school.  3^rd grade, here he comes.  :’(

Super Place Camp 2013

STOP THE MADNESS!!!!

…We left Austin early and came home.  On the way home, I called and got an appointment with his pediatrician for that afternoon.  We got in to see the doctor and she really thought it was just a virus and would run its course.  But just in case it wasn’t, she prescribed an antibiotic to give him only if he didn’t get better in a couple of days or if he got worse.  By that evening, he was worse.  He had a high fever, and a bad cough.  Also his trach secretions began to turn yellow.  I had Tommy pick up the medicine on his way home and we gave him a dose.  But by bedtime, he was crying and coughing constantly.  We checked his oxygen level and realized it was really low.  So we decided to take him to the ER.  Thank goodness for TCH putting a campus out in Katy.  It was so nice to not have a long drive, and we got into a room right away. 

Of course, when we got to the hospital, he was suddenly smiling instead of crying.  The doctor ordered a breathing treatment, IV fluids and a chest x-ray.  The x-ray showed no pneumonia.  They took a culture of his trach secretions but we had to wait a couple of days to find out if the culture grew anything.  I think he really kind of wanted to admit him because of the oxygen level, but we convinced them that we could take good care of him at home with his ventilator and the oxygen we had there.  So he prescribed a stronger antibiotic than what our pediatrician prescribed and sent us home.  He began to perk up in the next day or two and by Friday evening or Saturday, the fever was gone.  We thought he was on the mend, until Tuesday evening when his fever returned. 

We took him back to the doctor the next day.  She felt terrible that we had ended up in the ER the same day that we saw her in her office.  So she prescribed another antibiotic and a steroid for him to take over the next five days, along with the antibiotic that he was already taking.  She said if he wasn’t perfect by the following week, to call her back.

Beginning Monday, before we went back to the doctor, I noticed that John was sleeping all day.  He was sleeping until 9 or 10 in the morning.  Then he’d get up, eat breakfast and fall back to sleep.  He repeated this pattern all day, falling back to sleep after eating.  When he was awake, he wouldn’t play.  He would just lie on the floor.  By the next Monday, he was still acting this way.  So I called the pediatrician back and told her.  She consulted with his pulmonologist and they came to the conclusion that the respiratory infection was no longer the issue and we needed to take him to the ER at the main campus and let them do a complete workup to find out what was wrong with him.  So on Tuesday morning, after feeding John breakfast, Caitlin and I loaded him up and took him to the ER. 

Fortunately, when we got there, there was no wait.  We got into a room immediately.  They ordered more chest x-rays as well as abdominal x-rays.  After the x-rays, they discovered that his bowels were very impacted.  I will spare you too many details.  They tried two different things to give him relief, and neither worked.  So they decided to admit him and start giving him a liquid through an NG Tube (naso-gastric tube).  This tube is something he had as a baby in the NICU when he wasn’t able to eat on his own.  It goes in through the nose and goes down to the stomach.  They are able to use this method to give nutrition if someone cannot take it by mouth.  This particular liquid is very potent and should have begun to work by the next day.  It took 24 hours before he got any relief.  He really was pitiful, lying in the hospital bed.  He wasn’t able to have any other food or drink during this time.  While his stomach was being filled and I’m sure he didn’t feel hungry, the lack of nutrition had him completely lethargic.  It was so hard to see him that way.  Once he finally got the relief he needed, he began to perk up.  By the next day, he was able to start eating again.  That made a huge difference.  He still rested a lot that day because I don’t think he got a lot of rest the night before.  They told us on Thursday that he could go home, but I opted to stay one more night, just because the diaper-changing situation was pretty dicey by this time.  I would rather him dirty their sheets than mine.  By Friday morning, he was 90% back to normal.  He was smiling at everyone who walked in the room, he was grabbing stethoscopes while the doctors were listening to him, and he was pulling at all the wires and cables he could get his hands on.  We were finally released that afternoon. 

I was so happy to be sleeping back in my bed and I was even happier to have my little boy back.  He spent the next few days, recuperating and catching up on rest.  By the next week, he was 100% himself.  We saw his Pulmonologist this past Tuesday.  After looking at his x-rays, she said his belly was so full that his liver looked like it was on the opposite side and his bowels were pushing up against his lungs.  No wonder he wanted to sleep all of the time.

Here are some photos of John and all of the places he decided to rest while he was sick.

Keep Austin Weird

So much has happened this summer, and I have intended to blog about it all.  I have gotten a little bit behind.  Normally, I would try to jam everything into one post, but so much has happened, that I think I'll split it up into different posts.  So I'm going to play catch up a little.

A few posts ago, I told you about the crazy plans for our summer.  I knew it was going to be a busy one, but I was looking forward to it.  The main thing I was looking forward to was the therapy John was going to get in Austin.  It took months to put everything together.  I spent time almost every day working out some detail of the trip, from dates for the therapy, to what hotel to stay at and how many nights we would stay, to what day we would head home each weekend.  Well the day finally came.  We loaded up what felt like the entire house and off we went to Austin.  My niece, Jennifer, was coming along for the 3 weeks, and while I was very happy to spend time with her, I didn't realize just how big of a help she was going to be.

Pulling out of the garage on Day 1

We left on Monday morning, knowing that his therapy wasn't until 2pm.  I tried getting an early check in at the hotel so we could try to at least get the car unloaded before therapy, but was told that they were fully booked the night before and wouldn't have our room ready until after 3:00.  So I decided once we got into town, we would make a pitstop at our friend's house to eat lunch and get JT fed.  It was sure nice to see our friends.  Her son and JT were NICU buddies.  That's where we first met and they have been wonderful friends ever since.  About 1:30 we left her house to go to our first day of therapy.

Therapy went great.  John was a pro.  The first day was probably a little lighter than most because we spent the first 30 minutes going over John's history with the therapist.  But he did great and I was excited to see the things he would be doing over the course of the next 3 weeks.  We left the clinic at 5pm and went to check in at the hotel.  That's when the drama started.  The hotel had us booked in a  different kind of room than what I reserved.  Normally, that wouldn't be a big deal.  I would have rolled with it and been on my way.  But because I had made arrangements to have night time nursing for JT while we were there, I knew that I needed a room that had a separate bedroom so that we wouldn't be sleeping in the same room as JT and the nurse.  So the desk clerk called another one of their properties who said they would have the kind of room we were looking for.  It wasn't too far away, so I thought it wouldn't be a big deal.  We get to the second property, and low and behold, they don't have the right room either.  In fact.  That hotel didn't even have that particular kind of room on their property.  So after much frustration and talking things through with the manager, we made the decision that we would stay in two separate rooms that night at no cost to us, and then the next night we would go back to the first property who were definitely going to have the right room ready for us.  When we got to the first hotel the next day, guess what?  The room they had, was still not right.  This had a separate bed, but it was all in one room.  There was not a door to separate the rooms.  So the manager got on the phone to a 3rd property and assured us they would have the right room.  So we drive to this place, and were very happy to find out that indeed it was the room I was looking for.  We finally got settled into that hotel that evening and it ended up being an even cheaper rate.  That part was good.  The part that wasn't so great was that it was in a not so good part of town.  So we just made do and stayed in our room at night.  We only ventured out during the day time.  It wasn't a horrible set up, except that the only access to the bathroom was through the bedroom.  So for the nurse's sake and JT's, I set him up in the bedroom and Jennifer and I slept on the sofa bed.  FOR 3 WEEKS!

The rest of the week of therapy went great.  JT was working hard and was doing a lot of great things.  Going into this, I was so sure that he would get exhausted at some point and have a melt down in the middle of therapy.  He never did.  He worked hard every day and then came back to the room in the evenings and crashed early.  He was cruising a long doing great.  Some of the things they had him doing were so cool.  The upside of being in Austin was that we got to spend a lot of time with our friends.  They had us over for dinner at least 2 nights every week we were there.  July 4th fell on Thursday, and because he had therapy again on Friday, we decided to stay in town rather than driving home for one day and then driving back.  So we went to eat barbecue for lunch with them on July 4th.  It was nice to spend some quality time catching up.  After lunch, I took Jennifer and JT to the movies to see Despicable Me 2.  It was super cute.  Instead of going with our friends downtown for fireworks that evening, we stayed in and watched them on TV.  Of course, JT crashed early.

Week 2 of therapy went off without a hitch.  The hotel drama was behind us, he was doing so well in therapy and the week was sailing right along.  I thought this is a breeze.  We should have no trouble from here on out.  Boy, I shouldn't have thought that.  When we were leaving the clinic on Thursday, I was rear ended by a pickup truck while in the u-turn lane.  This was not what I needed.  There was not a huge amount of damage, but there was a nice dent in my bumper, along with some scratches in the paint and a little damage to the rear quarter panel.  I knew it could be fixed easily, but I knew I was going to have to go through the headache of dealing with insurance companies in order to get it fixed.  Ain't nobody got time for that.  On Friday, the therapist who was working with him said she saw a lot of improvements in John's strength since the previous Friday.  So I guess therapy must have been working.

Now it's week 3 of therapy.  I was looking forward to see what the week would bring, but I was also ready to be home, sleeping in my own bed for good.  This packing up and driving on the weekends was beginning to get old.  I was ready for it to be over.  Little did I know, the hard part was just beginning.  Monday night, when I put John to bed, I noticed that his heart rate was a little higher than usual.  That usually is our first sign that he may be getting sick.  Tuesday at therapy, he was fine.  He worked harder than he did any other day.  He even walked for probably 45 minutes in a gait trainer.  I just knew he was worn out and would crash that night.  And he did.  He fell asleep at 6pm.  That's really early, even for him.  His heart rate was high that night again, and by Wednesday morning, he had fever.  That's just great.  Not what we needed.  We stayed in from therapy that day and hoped that whatever it was would just pass quickly.  That evening, he was worse.  So I made the decision to pack up and go home early.  We were done with therapy and I needed to be home to take care of him....

Here are some of my favorite pictures from his time in Therapy.



Week 1

Day 1 on the ball

Doing some light reading 

Flying!!!

Working on balance and loving it.

Week 2

Standing at the ladder

knees

Standing

A Fun workout

Week 3 (very last day)

Having too much fun to be sick

Sitting up tall

Look how strong I am