Will makes three...

Dive 35- Today Will took something new into the chamber with him.  A few days ago he received a special package from his very good friend Evalena.  Evalena knows Will very well and knew just what to send him!  A Toy Story Look and Find book.  He loves it!  This morning in the hotel room he was looking at it and wouldn't leave it so I suggested he take it to the spaceship.  He looked for the hidden pictures the whole time I usually rub his ears and then a few minutes after the space helmet was on too! Normal ear rubbing time.  No ear rubbing, just finding Woody and friends! Space Helmet on...still looking for pictures!  This is usually Doc McStuffins time... don't worry, she came later! Thank you Miss Evalena for an awesome gift.  Will said it was "really cool"!  (I love his new vocabulary!) Day 15 at the gym.  The final day of Will's three week Intensive suit session.  Miss Tiffany was working with Jordan again when ...

Will finally got a good night's sleep!  Yay!  He got a solid 11 hours last night.  I hope he can do that again tonight! Dive 33- another laid back dive.  We are starting to miss Mason!  I hope she's back tomorrow.  I think she's trying to enjoy her summer too!  Diving takes a lot of time and there's not much time for activities in between.  Unless you're just going next door, of course! Day 14 in the gym...Will had a little more energy today, but it is the final days of the three week intensive session and he's just tired.  The little guy sets the bar so high for himself, breaking through goals early on, that there is no way he can keep up at that pace for the entire 3 weeks.  After all he's only human!  Today was much better than yesterday though. After Tiffany got Will's suit on him she said something like this, Ok Will, get in Alfie and head to the treadmill.  Will said, "Actually, I just walk around the room in Alfie...

This lack of good sleep routine is really starting to catch up with Will.  This morning's first dive went well.  Disney Jr on the television, we were solo for this one.  Will watched Doc McStuffins and Sophia The First during the flight.  No problems.  When we got to the gym Miss Tiffany was still working with Will's new friend Jordan.  Will enjoyed cheering Jordan on, and Jordan enjoyed showing Will what he could do.  It was pretty cute to watch them.   Mr. Jordan left and now it was Will's turn.  He already had a glazed over look in his eyes.  Poor baby is just tired!  Will started out tall kneeling at the mirror.  This was ok, not his greatest work though.  Then came standing with canes  He did quite well on this task.  The goal is how long he can stand with only one hand on the canes.  Watch for yourself! That was 1 minute 10 seconds if you didn't count.  Pretty amazing.  Last time we were...

It's day 2 of week 3 and I think it's starting to kick in for Mr. Will.  He's a pretty tired boy these days.  Partly because he's not getting to sleep very early.  I'm not sure what's going on.  I tuck him in around 7:50-8:00.  He seems like he's going right to sleep, then about 20 minutes later he's calling for me.  Tonight it was 9:00 before I could get him to calm down.  He told me he didn't like to sleep.  I think he needs his own bed! Anyway,  Dive 29 and 30 went well.  No problems.  Doc McStuffins playing both times, well this morning I convinced him to watch Disney Jr but guess what was on... Doc!  Good thing it's a cute show!  We were solo at both dives today. Day 12 Will started the day with his own game.  He was in Zipper (his wheelchair) when he entered the gym.  He saw the tub of bowling pins and had "a great idea"!  He rolled over to the tub, but a bowling pin between his legs and then brou...

A quick visit from the family included a train ride, the zoo and a trip to Will's favorite fountain (of this trip)!  Now it's back to work!  Will is really making some great progress this session.  It makes me so happy to see the smile on his face when he accomplishes something he's been working so hard to achieve.   As always, he still has a long way to go.  On the other hand he has come A SUPER, LONG way! So for my first amazing video.  Will's favorite part of therapy.  Watch this video.  Just looks like the rest of his jumping videos, right....wrong!  Check out this progress and look at the proud little smile he has! Balance is tricky for Will.  It's something that challenges every part of his day.  The more control he can gain, the better off he'll be.  He has made so much progress in this area.  Tiffany and I often talk about the first session (last May) when Will couldn't be left alone sitting ...

I can't believe we're at the end of week 2!  Will is making beautiful progress.  I can't wait for you to see these videos!  It was a great Friday.  Both dives went well.  No tears, no problems.  Easy Peasy!  The gym went well too...really well! Will invited Ben to work in the gym again today, so he did!  Ben was sore when he got up this morning.  Miss Cheryl told him the best thing he could do was get back in the gym and workout again today.  I guess he took her advice.  He went through all the same exercises from yesterday with very little complaining.  :) Will worked hard too.  Check out this picture.  Do you see anything AMAZING??? Notice he's not touching the canes...on either side!!!  Now look at Tiffany's face.  It was an awesome moment.  Well, you see for yourself... The best part is that he wasn't instructed to do that, it was just did it!  Then he didn't fall down after he reali...

Today started out much nicer.  Will was still eating Cheerios when we got to the gym so Miss Cheryl told him he could take them in the spaceship.  This worked wonderfully!  He wanted me to rub his ears (our usual technique to get his ears to pop) for a couple minutes and then went back to eating his Cheerios.  The chewing did the work for him (and me!)  Miss Cathy is back today, but no Mason.  Doc McStuffins is once again his video of choice! Day 9 at the gym. Yesterday Tiffany and I were talking about Ben and how he couldn't relate to what Will went through in a day in the gym.  It's not that Ben was thinking it was easy work for Will.  He knows how hard Will works.  I don't think any of us realize how truly hard he does work though.  So today Miss Tiffany gave Ben a little glimpse of what that might be like.  (although Ben got more breaks that Will does in a 3 hr session) Ben was happy to have something to do.  I think al...

The morning started out a little rough.  For starters we got to the gym a couple minutes late.  Doc Judy was back with us this morning and was there waiting.  She and Miss Cheryl were having a good conservation so they didn't mind, but I did.  I was trying to get Will ready and in the chamber as quickly as possible.  Mr. Will had other ideas.  He wanted to tell me something about Giant Olaf, but couldn't get it out!  It probably didn't help that I was trying to rush him.  Olaf is not allowed in the chamber due to the material he is made out of and the small voice box hidden away in his belly.  Will knows this and understands it.  I think he was trying to say he wanted to put Olaf on the shelf (the typical routine for Woody and Jessie, poor toy story friends, pushed aside for a pull apart snowman!).  I asked him if that is what he wanted to do, but he didn't answer so I carried him into the chamber, like usual.  This upset Will ...

Well. Meme and Iz have gone home but Ben is still here.  It's nice that the big kids have been able to come visit for several days at a time.  They get to see what Will does everyday.  They also get to watch lots of television and other screen time while Will spend his days working so hard.  I hope they realize how lucky they are.  I usually don't let them veg out all day! Dive 18- Will and Mason were together again this morning.  Mason picked Anastasia, for the movie.  Will watched it a little bit but not for long.  Then it was play time.  I had to put Buzz and Woody on top of his "space helmet"  and then he would tip his head ever so slightly and dump them off.  Great fun for him!   The gym... Will has been a little off this week.  He was pretty tired yesterday but still did some good work.  Today he started the day off just kind of goofy but still blew some of his goal out of the water!  There is no doub...

Here are some video clips from Friday.  Will fell asleep very early Friday evening (5:00pm) and slept through the night, so Isabel and I had a movie night.  Needless to say, I did not blog!  I wanted to share these clips though.  Will is working so hard and making such great progress already.  I don't want to go several days without catching you up.  So here you go...a few videos from his work-out Friday. Pretty amazing huh!   Can you see the improvement.  It was a good 10 ft before he lost his balance! Will really likes talking to you, the reader.  I hope you enjoy it too! This is a new idea Miss Tiffany had.  Will struggles to keep his body quiet (without wobbles), so now she's giving him time to do just that.  He loves it! This is something that Will has been working on each day, I don't think I've shared this since the first day This is how Will's day ended.  We went out for pizza.  H...

Our day started a half hour earlier than usual.  Captain David had to be somewhere this morning so we had to start at 7:30 instead of 8:00.  No big deal, right?!? We were solo on the spaceship this morning, Will thought the Disney Jr channel would be fine today.  He was happy when Mickey Mouse Clubhouse came on the TV.  Dive #10 went well.  No problems! On to the gym.  Miss Tiffany came in early for us so we could go right to the gym.  Thank you Miss Tiffany!  Will had a lot of energy this morning.  Most of you know he really struggles with his balance so this activity is really a challenge for him, but he did quite well with it this morning! After this it was on to the ladder.  Notice his face, that morning energy is already disappearing.  It is Thursday of the first week after all! It was time for the treadmill.  Will had just transitioned from Alfie to the cage and finally landing on the treadmill.  Will ...

I can't believe how mild this weather is.  I can't say I'm a big fan, after all July in Missouri is supposed to be HOT!  There are positives, we walked to the gym today!  It was a bit harder to get out the door with Miss Iz along.   She's a slow mover in the morning!  We got to the gym in time for Dive #8 although I forgot my favorite pen (that I use to journal every dive) and more importantly I misplaced Woody (a very important passenger every dive).  I also forgot my phone, which isn't a big deal except for today because Aunt Jess is picking up Iz for a day in KC.  I was hoping she could find us without calling me... So, I borrowed a pen from Miss Cheryl and borrowed another Buzz from the gym and we climbed aboard the spaceship.  Mason is there this morning, so Will let her pick the movie.  Baby Mozart came on and Will got nervous.  He has always been scared of those movies, especially the one where the little dinosaur jumps out from ...

Dive #6 went well.  We had a new diving buddy this morning.  A older lady who was a doctor.  Will introduced her to Doc McStuffins (of course!).  The dive/space flight went well.  I think Doc Judy liked Doc McStuffins! Day 2 at the gym was full of new things!  Will had a great day trying out some different activities.  I have selected some of my favorites to share with you! One of my suggestions to Miss Tiffany was what I call the Mowgli walk.  You know, the boy from The Jungle Book who walks on his hands and feet like a bear (which is apparently what it's really called, the bear walk).  Will gets up on his hands and feet quite a bit at home, but doesn't move.  I thought it would be a good way for him to get around instead of crawling everywhere.  Tiffany agreed! Isn't that cool!  He said it was hard work, but by the time he made it to the table and back he was getting much better at it! He Mowgli walked to the table t...

The first full day of therapy and dives went well.  Will and I were solo this morning in the spaceship.  There has been one other little girl joining us, but she just couldn't get out of bed this morning!  I don't blame her!  Will has done great on all the dives so far.  He settles into his chair with his little Buzz and Woody figurines and watches a little quality programming, this morning it was Doc Mcstuffins!  I'm anxious to start seeing some changes in him.  He gained so much from our last trip to the oxygen chamber.  It will be very exciting to see more changes occur! Miss Tiffany and Buzz were waiting for Will in the gym.  Will has been talking about going to Miss Tiffany's gym, so he is excited to get to go this morning.  Will played with a favorite toy while I talked to Tiffany about goals and objectives.  I'm excited to see what she does this time around.  When I think about how far Will has come in the past year, it...

This summer is flying by!  I can't believe we're already back in KC.  School will be starting before you know it!  (Sorry about that!)  We have had a busy summer.  All three kids went to summer school the month of June.  Iz also played softball.  We took a quick camping trip to Mark Twain Lake after the 4th of July weekend and then we packed up and headed to our home away from home...Kansas City. Here are some quick pictures of our camping trip... Now to Kansas City pictures.  Phil and the kids came up with us and stayed the weekend.  It was nice having them here.  We had a pretty relaxing weekend.  Will started his dives Saturday morning.  After that Phil took the kids to the pool while I ran to the grocery store.  That afternoon Will had his 2nd dive and then we headed to mass at St. Therese North.  Then out to dinner and bowling! This is dive #2. Buzz and Woody are on boa...

Today was a big day for Will and his friend Evalena and both the Mommies!  For those whose don't know the story, here's a quick recap.  Evalena and Will have had an instant connection since the first day of kindergarten at Claude Brown Elemenary.  Evalena has always been a good friend to Will.  She sees him as a 6 year old boy in her class who makes her laugh.  She doesn't look at his differences or if she does she doesn't mention them.  She is very caring and nurturing to him but plays with him and makes crazy faces with him...just like a typical kid.  So...at Chihuahua's back in March Evalena and her family came out to eat.  While they were waiting for their food, her parent's told Evalena why they were eating out that night.  They told her that the money that was raised that night at the restaurant would help to pay for another trip to Kansas City so Will could continue to get stronger.  Evalena wanted to know how she could help. ...

If you followed this blog at all in the past year, you know Will has been a busy boy.  Since last May we have been to Kansas City three times for three weeks at a time for the Intensive suit therapy at Hyperbaric Healing Institute (HHI).  Of course this last time we added HBOT (oxygen therapy) as well. Phil and I feel that these trips have strengthened Will's abilities and given him so much more confidence to do the things that come so easily for you and I.  Will has come a long way since the days of his first therapies but he still has a long way to go. We are planning another trip to HHI this summer for the same suit therapy and HBOT combination.  We are looking at the month of July for this next session. Last April we had our first Kansas City Round-Up golf tournament fundraiser.  It was hugely successful!  As I mentioned, we went to KC three times because of that fundraiser!  The only thing was wasn't successful about that day was the weather! ...