Will makes three...

Today started out kind of gloomy in Kansas City.  A few minutes after we got to the gym it started getting very dark.  All of a sudden it was pouring!  It turned out to be a beautiful day, what a difference a few hours can make in the weather.  What a difference a few weeks can make in a brave 5 year old boy!   Mr. Will has picked up some bad habits.  "Help me!" to name one.  I'm not sure when it happened, I hardly ever hear him plead for help at home.  I know Will gets frustrated, we all do about certain things.  I just don't want him to give up too quickly and ask for help.  So, if you're reading this and are given the opportunity to help Mr. Will...make sure he has tried his hardest first.  It will benefit him greatly!  It's sometimes hard to watch but he can do it, we just have to let him try! Will is getting stronger and stronger.  I am amazed at how far he has come in the last few months.  These last t...

Yet another amazing day at the gym.  Mr. Will is working so very hard!  Today he basically started "working out" by himself!  Tiffany and I were talking about changes we'd like to make to Alfie and tinkering around with some ideas.  I glance over at Will and he is crawling up to the blue wedge, puts his hand on the wedge and then kneels next to it.  He proceeds to stand up (hands still on the wedge) and then slides down.  This is a normal part of Will's routine, but usually Miss Tiffany is sitting there helping him stand all the way up and throw a beanbag or ball before he slides down.  Will was doing his best to do this on his own.  What a kid! Will had a great day.  He did much better on his walk through the building.  He is still struggling with leaning back on Alfie.  When this happens he rolls backward, which is very frustrating for Will.  Today, he had a quicker recovery time each time he stepped backward.  It's the...

Today was a big day for Will and honestly for me!  We ordered Will's wheelchair!  I have to say, it's going to be a pretty cool looking ride!  Robert from numotion was waiting for us at the gym this morning.  (Mr. Will did not want to wake up after waking up at 3:00am and not getting back to sleep until 5:00!)  Anyway, Robert was very nice and made ordering a wheelchair a very easy, non-intimidating process.  In about 90 short days (ha!) we should have Will's chair.  Now to start thinking of a good name! Ok, now on to Will's amazing power.  Tiffany first tried this a couple times last week.  It truly is amazing! Will has ataxia.  It causes him to shake, kind of like having tremors.  It is especially bad when he's tired.  It is probably one of his biggest frustrations especially when he's focusing on fine motor tasks...writing his name, puzzles, even eating.  We have talked about starting him on medication, but like any ...

It's week three.  Our last week here in Kansas City.  A place I really have started to accept as our second home.  I really do like it here...but I think Will and I are both ready to get back home! A lot of focus on walking today, which was good.  I would love to see Will ditch Alfie one day and take off on his own.  I believe he will.  As I was watching him today and listening to Tiffany talk to him I realized something.  There are so many movements that I just take for granted.  Especially walking.  Think about it.  If you're sitting on the couch reading a book (yeah right!) and the room starts to get dark, what do you do...get up and turn on a light.  You don't have to tell your body how to accomplish that task.  You just get up and do it!  You want a drink or a snack...get up and get one.  Easy right, simple. Like she said, Will has to think about what he's doing.  He also needs to get lots of practic...

Will and I very much enjoyed spending the weekend with the rest of our family!  We picked Phil, Ben and Isabel up at Union Station Friday afternoon. After stopping at a cupcakery on the way home (it's got nothing on my Mom's cakes!), it was on to the hotel.  The kids were excited to go to the pool so Phil took them while I did laundry...by myself...sad, but I enjoyed that!  After dinner at Minsky's Pizza (yum!) we called it a night. Saturday was a gloomy, rainy day.  We decided to head to Kansas City's Aquarium.   The kids liked it. We walked around Crown Center after the aquarium.  The highlight was the ice cream the kids enjoyed while Phil and I had some afternoon coffee.  Delicious!   After mass at St. Therese we headed to a little Mexican restaurant just down from our hotel.  Phil taught Ben how to balance a salt shaker.   Steady... Steady... Got it! Will's turn...keep trying Mr. Will. ...

It's hard to believe two weeks have past.  I think it has gone by fast...I'm not sure if Will believes that though. I think he's ready for the weekend.  We're having visitors this weekend!  Phil, Ben and Isabel are on coming up on the train.  Yay! Therapy went well today.  Will wanted to do the stairs and make Buzz fly.  He started out throwing the basketball in the basket (or at the basket).  His next choice...the stairs!  He did pretty well.  It still takes him a long time to get the job done, but he is making definite progress! The interesting thing about Will is that when he's at home, he's all about "Let me go."  The last two weeks here, he has been on Tiffany for the exact opposite..."Help me" and "Don't let go".  I don't understand at all.  For example today after the gym back at the hotel for lunch Will was determined to climb in his booster seat (that is strapped onto a chair-not the easiest hurdle to jump) "...

What a beautiful day!  Will and I walked to the gym again this morning...his choice.  He has some new sunglasses that he tried out.  I didn't take a picture (not a very good blogger, now am I), I'll try to snap one and post later! Will had a good day today, but it didn't start out so great.  He was pretty distracted this morning.  I'm not sure why he had an audience of all little friends, including his new Galahad and another Mike (they came as a pair).   It was hard to watch.  Miss Tiffany even had to threaten to make his friends go away... Just wait though...watch what happens when an unexpected visitor pops in.  Ms Linda was on her way next door to the hyperbaric oxygen chamber when she saw Will through the glass doors.  Miss Tiffany knows Linda and gave her the ok to pop in.  She has the sweetest little voice...Mr. Will was lovin' every minute of it!   What a flirt! Thanks Ms Linda for cheering Will on!  ...

Will has a friend sleeping over tonight!   Miss Tiffany made a deal with Will that if he worked hard on the stairs and didn't fuss about it he could take Buzz home for the night!  Mr. Buzz is here now!  Will still doesn't like those stairs but he handled it pretty well today.  He was very happy to bring Buzz back to the hotel.   Will worked very hard today...as he does everyday.  Here he is with a couple other friends...wiped out! See Buzz watching over him.

Will is starting to look better in Alfie!  The front wheels are still locked to help him focus on one thing at a time.  He's still leaning back occasionally, but not all the time.  Miss Tiffany took the brakes off the rear wheels so if Will leans back he will roll backwards.  He didn't spend near as much time going backward today as usual!  Yay! I jinxed the stairs.  They didn't go any better today.  I think I'll leave it with that.  On to tomorrow!

Week 2...let's see what Mr. Will can do!   We walked to the gym this morning.  It was a nice little walk.  I think the cool air woke Will up a bit more and that was a good thing.  He didn't sleep the greatest last night and was a little crabby this morning.  By the time we got to the gym Will was excited to see Miss Tiffany and introduce her to Evie and Mr. Cuddles!   I think this week is going to produce good things!  I have a good feeling about it.  Will had been working on taking his shoes off by himself.  He's getting pretty good at it!  See for yourself! You like all his "friends" watching nearby!  Will and Tiffany work on other things too, but I wanted to show you another clip of the stairs.  Ever since Miss Tiffany combined Buzz and the stairs each day gets a little better!  Today was a little better than Friday...I'm thinking tomorrow will be even better!  He still whimpered a little bit today, bu...

Will and I spent the weekend in KC.  We really wanted to go home and spend the day with My mom and sister (as well as the rest of the fam) for their birthdays, but we decided to stay put and try to relax.  They were meeting at Forrest Park for the Balloon Races on Saturday!  How fun! Happy Birthday Mom and Katie! It was a good weekend, I'm glad we stayed.  Friday night was quiet.  Saturday we ran some errands, grabbed some lunch and then the visited a very nice mass at St. Therese Parish.  A very energetic visiting priest from Cross Catholic Outreach painted a vivid picture of what some parts of the world deal with everyday.  I left there feeling alive and very lucky to be living the life I've been blessed with. After mass we ran one more errand...in search of a wine glass for me and Evie & Mr. Cuddles (more Mike the Knight figurines) for Will.  Unfortunately that took us to Wal-mart (not my favorite place)!  Will was so excited that he...

Today was a new day!  With the help of some little friends and some great ideas from Miss Tiffany...the week ended on a much better note.  Will was excited to take his little friends (3- Buzz figurines, Mike the Knight, Trollee, Yip, Yap, Pluto, "little" Boots and Woody) with us this morning.  I had to give him a little talk first though. I told him they could come along, but only if he worked really hard and didn't fuss about it. I know that sounds really mean.  I promise I said it in a very nice voice!  Anyway, he agreed!   Tiffany had some new ideas too.  First of all she let Will choose what he wanted to do first... for Mr. Independant, that is a big deal!  So Mr. Will chose the scooter!  A new activity this week! Plus he got to use his friends in this one!  Bonus! What a hard worker huh!  A pretty cute one at that! The second choice...the stairs.  Deep breath, here we go!  Here's where the great idea from Mis...

If you ask Will if he still likes Miss Tiffany's gym he says "yes", but that's not the answer I would expect after the last couple of days!  He's still a happy little guy, but also very exhausted!  It was another long morning at the gym, for both Will and Miss Tiffany!  Learning to walk in Alfie again is not easy, but he'll get there...I just know it!  :)  Climbing the stairs on the other hand.  Ugh!  He is just fighting that one.  I know he has a very hard time sidestepping and it's not his favorite thing, but he usually understands what he's got to do and powers through!  Not with the stairs.  Tiffany and I are stumped as to why he's so against it!   Good video was hard to come by today for reasons beyond my control...a spent little boy, but this one kind of paints the picture for you.  I didn't even want to share this one, but I'm hoping by the end of the three weeks I will be able to share the crazy progress he's made!...

Today Mr. Will wasn't as excited to go to the gym.  Tiffany said this is the typical reaction that she normally sees on Wednesday of the first week.   I get it though.   He has been working so hard on things that we just take for granted, which is a normal day in the life of Will, only here (at Miss Tiffany's gym) he works extra hard for an extended amount of time.  I think I said this last time we were here...typical adults don't spend 3 hours a day 5 days a week at the gym unless they are training for a major challenge.  I'm not sure what they would even train that hard for.  Will is working on several new things this time.  He made such great progress in May that now Tiffany can get to other "layers" of skills that Will needs to work on.  Take Alfie for instance, when we came in May my concern was controlling Alfie at all!  Poor Will just would look over to the right...boom, he was turned to the right!  There was no way he could walk ...

As you may have wondered, Will is missing THREE whole weeks of kindergarten for therapy this time.  Phil and I really pondered this decision, but in the end decided that Will's physical development needed more attention right now.  I talked to his school over the summer and let them know that this was our plan.  The principal, teacher and Will's one on one para-professional have all been wonderfully supportive.  I met with Will's teacher and para before we left.  They gave me a packet of work to keep us busy and some very helpful advice and tips on how to "teach".  I am very thankful for this.  I definitely don't want him to get behind...so now the pressure's on!  I decided to enlist the help of Miss Tiffany.  This is a small glimpse of how we mixed cognitive and physical development in one " F is for FUN" package! Thanks for your help Miss Tiffany!  I think we make a pretty good team!

I realize that I haven't posted anything since the last time we were here.  In fact, I didn't even finish posting about the last few days of that time! I will try to get some more pictures up from our busy summer and maybe even some of the start of school while I'm here.  It seems like this is the only time I actually can sit down and post. Life is busy...but good, so I won't complain! So here we are again!  A huge thank you once again to each and every one of you who helped us get here.  The golf tournament and Chihuahua's night fundraising last spring were so successful we were able to come back for another three weeks!  Thank you so much! Will has been talking about Kansas City all summer.  It's so great to know that he enjoyed (most of) therapy last time.  He worked so hard, it will be interesting to see what happens this time. Miss Tiffany heard Mr. Will right when he came through the door.  He was talking up a storm about all the deta...

I can't believe the time has passed by so quickly.  Mr. Will might not agree though!  He has been putting 100% into everyday since the start!  For one of his activities today he worked on controlling Alfie again.  He's getting better every day, just as predicted!  The therapy room has a strip of tile along one wall.  Will has been practicing his control on both the carpet as seen in the last two videos and the tile.  The carpet naturally gives the wheels some resistance so they don't turn as quickly, making Alfie a little easier to control.  The tile floor on the other hand, does not.  Watch how Mr. Will works Alfie just right to be able to kick those pins.  Of course he still has some room for improvement, but this is a remarkable difference from pre-therapy! After the gym I meet my college roommate, Jill for lunch.  It has been so great to catch up with so many friends and family during our time here! Not long after Will and...

Back to the gym for another hard days work!  This is day 2 for kicking the pins over.  He has already improved.  Watch this video.  I love how Ms. Tiffany is bragging about Will to Ms. Kate!  I'm so proud! Phil and the kids are coming tomorrow afternoon!  I'll try to keep up with my posts, but as you see, when we have visitors I get a little behind.  I can't wait to see Will's face when he sees the rest of the family!  It's been too long, although FaceTime on our phones has been a fun way to keep in touch!

Meme got to come to the gym with us today.  I think she was pretty impressed with Mr. Will!  One skill he is really working on is controlling Alfie.  Before our Kansas City trip he couldn't keep it going straight unless the front wheels were locked.  As a result, we kept them locked most of the time.  Watch how he purposefully turns to kick the pins over.  It is an amazing difference!

Will and I had a great visit with MeMe!  We visited the Kansas City zoo with my cousin Michelle and her adorable family.  Thanks Michelle and Bruce for including us in your outing!  We enjoyed the zoo very much.  It is really beautiful.   Will was counting the Meerkats.    I always have to take a picture if he's standing!   We also checked out the plaza while MeMe was here.  Will just loves that mermaid fountain!  We had to visit it several times during our time on the plaza.   Another standing one...by the Mermaid fountain this time! Will and MeMe at another fountain on the plaza. Then back to the Mermaid fountain for some splashin'! Thank you so much MeMe for coming to see us in Kansas City!  Will and I both enjoyed your visit very much!

Wow!  I can't believe the second week is already over.  Will has made such amazing progress that I'm kind of sad there's only one week left.  I do miss my hubby and my big kids though, so I guess it has to end sometime!  Today Will worked "super hard" which is how he would describe it.  If you haven't figured it out yet, this kid is a worker!  Today he was cruising at the windowsill, not one of his favorite activities. It's one of the more challenging activities Tiffany has him do.  Will's hips are not very strong so controlling the side step is difficult for him.  After several minutes of cruising he stepped to the side and at the same time took his hand off the ledge.  He lost his balance and fell, hitting his face (right between his upper lip and his nose) right on the edge of the ledge.  Ouch!  He cried, which means it must have hurt because Will has a pretty high tolerance for pain.  Tiffany picked him up and loved on h...

Today I thought I would share something new that Will is working on.  A couple days ago he got a new bike.  It's a pretty snazzy ride and he really likes it.  It's called a balance bike.  The primary function of the bike is to help kids learn how to balance.  As you know that is very difficult for Will, so this bike will be a work in progress.  I thought I would post a video now in the beginning stages in hopes that just like the sit-stand videos, change will occur quickly.  Time will tell!

Mr. Will was pretty tired today.  It's Wednesday of week 2.  He's been working so very hard.  He struggled with a few of the activities early on in today's session, so I never thought he would have energy left for this!  Prepare to be amazed... Unbelievable!

Today Mr. Will and I had a surprise visit from Aunt Katie!  She called me last night to let me know that she was in Kansas City and wanted to drop in on Will at the gym.  Well sure, come on in! One of the things we really want Will to master is getting in and out of Alfie (his gait trainer/walker) by himself.  Tiffany changed some things on Alfie that made this much easier, but Will still had to learn how to control his body.  I think he's doing pretty good.  Watch how he keeps looking over at Aunt Katie...just to make sure she's checking him out! Thanks for the visit Aunt Katie!    Now for the regular daily video.  Will is doing a lot more than just sitting and standing, but I wanted to pick one thing that he does daily so I could share with you the progress that I see daily.  He continues to do something new every day that leaves me speechless.  Watch what happens when Ms. Tiffany looks away... Did you notice the no hands ...

Today's video is amazing!  Will is doing so well, making marvelous progress.  Just keep an eye on his hands in this clip. I love that he's working so hard, but also having so much fun!  He loves going to "the gym" everyday!

I know you all are on the edge of your seat waiting for more video posts!  Well, my friends wait no more... Friday's "workout" (as we're calling it!) was the best yet! Check out Mr. Will... (this was all him...no special shoes, no special suit.... just pure determination and skill!)

Today's session was later in the morning, from 11:30-2:30.  Will was a little more tired at first.  He worked hard for about an hour and then looked like he was hitting the wall.  I suggested a snack to give him a little energy.  Mr. Will sat down on a bench and had 4 or 5 peanut butter crackers and a sip of water and then said..."Now I play with the animals?" He pushed a little shopping cart over to the table and did his best work yet!  The video I selected for today is unedited.  I wanted to let you see just how hard Will is working and how far he has come in such a short amount of time.  Notice how he stumbles and catches himself.  Also,it should be noted that the clip is over 1 minute long!  That is an amazing amount of time.  Just look back on that first day.  Remember how he leaned on the table... that my friends is amazing progress! Tomorrow marks day 5, one week already done.  I can't believe how fast this week h...

I have been sitting here at the computer for hours looking at all the video I took today.  It is so awesome to see Will change from day to day.  You have to appreciate every little thing when you have a child like Will.  Little things like standing up next to a table playing with a toy are taken for granted everyday by most children and their parents. At home, Will spends most of his time playing with toys on the floor.  When he does pull up to something it's usually the ottoman or the couch, something soft that he can lean up against and not have to worry about bumping with his ataxic movements.  He never stands up next to a table to play with a toy that is sitting on that table.  So you have to put yourself in my shoes to realize how unbelievably awesome it is to see Will pull himself from sitting in a chair to stand up next to a table to play with a toy.  And then to see the determination in this child's eyes to keep repeating those...

Oh my goodness, the difference a special suit can make!  Tiffany (the therapist) said yesterday that she thought the suit would be great for Will... boy was she right!  I could not believe the difference in his control and confidence. He typically has this wobbly little body that he can't quite control.  The suit went on and the wobbles all but disappeared!  You could see the confidence boost all over his face. Four days before we left for KC I bought a new video camera.  I tell you this because I was devastated tonight when I went to edit some video from yesterday that I just knew I filmed to find that I didn't film it at all...just took a picture!  Aaarrgghh!  Oh well, it's not the end of the world.  I do have some video from yesterday but not the clip that I was hoping for. Ok, well the point to that ramble was this.  Yesterday Will was standing at this little table, playing with a toy.  He was leaned against it propped up...

Hello from Kansas City!  Will and I arrived yesterday after first stopping off in Eldon to see cousin Patrick graduate from High School.  The day before cousin Kylee graduated from college!  It was a busy weekend for that family! When we checked in the hotel there was a package waiting for us.  A friend of mine from my high school days, Neeli, left a very thoughtful gift for us.  Then when Will and I went to our room we found a beautiful bouquet from Phil, Ben and Isabel.  It was hard to leave them behind in Eldon, especially on Mother's Day.  Finding this beautiful arrangement of flowers certainly helped! I have to mention that this trip would not have been possible without the amazing fundraising efforts from so many of you!  The golf tournament was unbelievable!  I should have some pictures to post very soon.  It was a very nasty rainy day, but that didn't stop the 156 golfers and loads of volunteers from coming out to raise mo...

Life is always so crazy busy for me that I never find time to blog.  I really need to schedule into my week...somewhere!  I think most of you know about Will's upcoming trip out West, but I thought I should probably tell the rest of you! Mr. Will and I are going to be leaving for Kansas City on Mother's Day for a little adventure!  The next day May 13th Will has an evaluation  at the Hyperbaric Healing Institute ( www.hhi-kc.com ) to begin a three week intensive therapy session!  He will be wearing a special therapeutic suit that will make his brain more aware of what his body is doing.  That's the short, simple version anyway.  The therapy is everyday, 5 days a week, for three weeks.  He will finish on May 31st.  The hope is that after so many hours in the intensive therapy suit, his brain will remember the correct way for his body to move (again, in simple terms), and he will make some measurable progress.  If you're interested i...

Thank you so much to those of you who came out to Chihuahua's Mexican Restaurant last Wednesday for dinner!  It's been amazing to see how many supporters we have!  We sent out one little flyer ...  to a few of our close family and friends...who must have sent it to their close family and friends and the result was a full restaurant for several hours!  Will is one lucky little boy!  We feel so loved.  It truly is an overwhelming feeling to be the recipient of such gracious gifts.  I know this is only a glimmer of what we will experience at the upcoming golf tournament.  I'm not sure how I'm going to handle that event!

On February 8th Will visited Shriner's Children's Hospital for a routine check-up.  The appointment went well.  The PT gave us some suggestions on ways to strengthen Will's quads.  She also made some adjustments to his gait trainer.  She was very happy with his progress.  The Doctor gave him a quick look and agreed that he is making good progress.  They took a couple x-rays to make sure Will isn't starting to get scoliosis.  They weren't overly concerned, but said it was a good idea to take some x-rays.  Will school PT recently told us of her concerns with Will's posture.  It's nice to have so many people watching out for Mr. Will.  We will be making Shriner's a regular 6 month visit.   Mr. Will's new bear and hat!     

I can't believe how fast this year is flying by.  I'm in complete denial that it is February 21st already!  You know our life is not boring, it's quite the opposite really...I'm too busy to sit down and blog!  We are snowed in today, so I finally found some time!  (Although I had to fight for a turn on the computer!) It's way too cold for this!  Crazy kids! :) Will is taking a small break from some of his therapy, but he will be staring up again soon!  I just filled out the paperwork for Therapeutic Horsemanship's Spring session.  We took the winter session off for many reasons, one of which is the temperature!  It gets cold in that barn! We took some time off aqua too, not because of the temperature, although sometimes the heater could be turned up a little bit more!  I let Ms Kim know that we would be starting up again soon.  I think Will misses the pool and Ms. Kim! Here are a couple pictures from Aqua from the Fall. ...

Ok, since I haven't been posting anything lately,  I thought I would just sum it up in a few picture and captions...Here goes... October                                    Phil and I went on the AB tour for the first time in October for his birthday! A fall day in the leaves at Aunt Katie's house! Don't forget those crazy cousins!  Aren't they cute! Look at Will's new yoga move!  That's another cousin in the background! November Like Isabel's new glasses!  They have quite the personality...just like her! Thanksgiving at Grandma Betty and Grandpa John's house! The cousins with Grandma Betty and Grandpa John...good lookin' bunch! Miss Isabel turned 9!  With a "dress funky" theme party...her idea! The gift of the year... McKenna! All the Aunts (in their funky gear) gathering around to meet McKen...