Will makes three...

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! ...

Thank you so much to all who came out Thursday night for a Delicious meal at Chihuahua's Mexican Restaurant for Will's fundraiser! We were touched to see so many of you there.  The generous love that we feel from our family, friends and church family is always overwhelming.  We are so blessed to have such a strong support system. The really amazing part was the amount of teachers and staff from Will's elementary school who came.  It was really wonderful to see how many people Mr. Will touches everyday in the halls of Claude Brown Elementary.  I am really happy with his school and the constant support we have received from his principal and staff.  Will also had a few of his little friends and their families in attendance.  It was so fun to watch him interact with them.  He's such a ham sometimes! So, again, Thank you for caring about Will.  We couldn't continue to schedule more therapy trips with out this support.

Will is back home and in school right now.  He was happy to get home and back into the swing of things!  I'm trying to get back into the swing of things too!  It's a busy week.  There is something planned every night!   I know everyone is busy but I hope you can make time for a dinner out Thursday!  Phil and I appreciate all your support and can't imagine where Will would be without it!  Please print this flyer off (you should be able to right click on it and select print) and bring it with you!  You can come anytime between 4:00 and 9:00.   Hope to see many of you there!  Without fundraising there is no way we could continue these amazing KC trips!  We are planning to go again this summer for both the suit therapy and the hyperbaric oxygen therapy!  See you Thursday night!

Well- the car is mostly packed and the rest is boxed and ready to load in the morning.  Once again, I can't believe how quickly this time passes.  I am ready to see the rest of my family tomorrow though!   So where to start... Today was a great day.  Both dives went well.  It's going to be kind of bittersweet tomorrow.  There is nothing fantastic about sitting in that chamber twice a day for 1hr 1/2 but it has been nice spending it with the same people.  Baby Milleigh went home last week but we still have two others with us.  They both have their own story and I admire both of them in different ways.  It has been a better experience because of their company!   Now on the the gym.  My goodness, what a busy day!  Will was able to choose what he wanted to do today, which pleased him very much.  Miss Tiffany gave him choices of course, but even then he went out on his own at times.  I have several video clips t...

It's a little colder in Kansas City, but the sunny is still shining.  That is a beautiful thing!  So was watching Will at the gym today!   The day started off too early, for me anyway.  Last night around 11:30 the fire alarms in the hotel went off.  Very loud and shrill alarms.  Sadly, I wasn't in bed sleeping where I should have been.  I was in the shower which was even worse!  I was sure I was going to be the one they showed on the news standing there wrapped in a towel on the courtyard of the hotel!  I jumped out of the shower and called the front desk.  It took them several rings before they answered, which really made me think about that image.  Finally, someone answered (about the same time the sirens stopped) and apologized for the inconvenience.  He said an alarm in one of the guest rooms went off causing the entire system to sound.  He assured me there was nothing to worry about.  Whew!  Luckily, Will...

Today's dives went well.  Will is starting to get a little restless in there, but he is still doing a fabulous job in that chamber.  The chamber is doing a fabulous job on Will!  I am continuing to notice more language and interaction with others.  He seems to be having more fun with everything!  (well except the stairs...I'll tell you about that later!) Day 11 at the gym. No big record breaking was done today, but it was still a good day.  Will is still working hard.    Slow and steady! So, everything went well until... the dreaded stairs.  Once again, terrified!  I couldn't even watch this time.   After gym time was over, Miss Tiffany and I talked about the stairs goal.  I think we're going to forget it!  I told Tiffany that I would work with him over the next few months and then maybe we can try it again next time.  Maybe.  Woo Hoo!  It's just not worth traumatizing him anymore....

I'm always amazed when we get to the third week.  When we're planning these therapy sessions, it seems like 3 weeks is a crazy amount of time to be away from home, away from family, out of school and away from regular therapies.  But when we're here, time goes by pretty quickly!  I really can't believe that it's the third week!  Don't get me wrong, I'll be glad to get back home and back to regular life.  It just always surprises me how quickly time passes. I want to begin by thanking my husband, Phil, for arranging for me to go home over the weekend for my sister- Heather's 40th birthday party.  Phil came up Friday evening.  He went to all of Will's weekend dives so I could fly home Saturday afternoon.  Then Sunday I hitched a ride back to Kansas City with my sister Katie who came up to visit a dear friend of her's and catch some of Will's therapy on the same trip.  It worked out perfectly.  Thank you so much Phil! So dives 29 and 30...

Oh what a night! Will woke up at 3:30 a.m. wanting a drink of water.  I got him a drink of water, in a cup with a straw.  Um, big mistake!  He slurped the water down.  A couple minutes later it was coming back up!  He hadn't eaten anything since lunch yesterday and that consisted of a  small handful of strawberries and a cheese stick.  So the logical thing to do was feed him right... so I handed him a few peanut butter crackers and then went back in the bedroom to clean it up.  Mr. Will who was very hungry gobbled down 4 crackers in record time so guess what...they also came up!  Over the next 1 1/2 hours there was a lot of moaning and cleaning up.  Poor Will.  I felt so bad for him and also felt entirely guilty.  I should have done things differently! He did finally start to feel better.  Whew!  So I sent Captain David a text that we would not be seeing him this morning.  I sent Tiffany one that said I would l...

Will woke up early this morning.  He laid in bed until 6:30 but I don't think he slept after 5:30.  I was nervous about what that might mean for his day. Dive 23- Will was a little more active this time.  He requested Team Umizoomi but it didn't hold his interest like Doc MuStuffins does!  He was flying Buzz all over the place.  When we were "landing" and it was ear popping time, Will asked me to fly Buzz instead.  He had me doing loop-de-loops and flips and everything that Miss Tiffany does in the gym.  He thought it was hilarious (his word) when he had me fly Buzz crazy!  He would show me what to do by holding his pointer finger out and making zig zag and other unique flight patterns.  It was pretty cute. Later at the gym... Tiffany thought they would start on the stairs today and "get them over with".  I thought this might be her plan so I talked to Will about it over breakfast this morning.  I asked him why he didn't like th...

It's Wednesday of week 2.  Again today, no problems in the spaceship.  Will chose Doc McStuffins to watch both times.  It's so nice that he gets to pick his show.  Captain David asks him each time and Will is happy to choose!    Day 8 at the gym started out nicely.  Will rolled on his belly to warm up.  When Miss Tiffany told Will to get ready to roll this is what he did. Straight as a board! After rolling they went to the cage, where Miss Tiffany made a huge adjustment to Will's supports.  Normally Will has 8 bungee cords giving him support while he stands.  Today she cut that number in half!  Only 4!  Will struggled more than usual, of course, but it was pretty remarkable to see him working so hard to keep upright. Having less help standing means very tired legs!  After the cage they moved on to standing with Buzz.  Will still did pretty well with this exercise.   From there it just we...

Will is still doing great dive after dive!  I am very lucky that he is a laid back little guy.  I can't imagine having to entertain him for the whole dive/flight.  Hopefully this will continue! Day  7 This little guy is on a roll.  He started off slowly again and had some rough spots here and there, but he still had an AWESOME day!  Tonight I have to break the video in 3 parts.  I hope you find it worth it.  I obviously did!  Here you go... Part 1 Part 2 Part 3 I'm sorry for these three part videos.  I wasn't able to post the entire video because it was SOOO LONG!  This is, of course, the reason I wanted to share it with you.  After this (and a couple other exercises) Will said his feet were tired and then a little later he said his toes were tired!  Pretty cute, but probably also true!    Will was tired tonight, he said he was ready for bed at 7:00.  By the time I got him ready an...

It's Monday morning of week 2!  Phil and the kids got on a 8:15am train and headed back home.  Will is on Dive 17 and 18 today.  That's hard to believe.  He is still doing really well with them.  Today he watched the Disney Jr channel on TV which worked out nicely.  Milleigh was back for the afternoon dive.  Will was happy to have her back, he didn't show it too much in the spaceship but this morning when I told him she would be back today he smiled really big.  We found out on the spaceship that she likes Mickey Mouse too! Day 6 at the gym started off kind of shaky.  I think it was just a little hard for Will to keep up with the pace at first. It is Monday after-all!  Transitioning to sit on the bench even proved to be a difficult task and he's been doing pretty well with that lately.  He finally snapped out of it though, by the time he was standing with his canes he was awake and looking good!  This video is a little long, ...

Phil and the kids left this morning, after getting to stay an extra night due to some icy roads.  I love when they come to visit.  It's a reminder of how lucky I am to be a mother of three beautiful kids and the lucky wife of a great guy!  Unfortunately the blog suffers when they are here, I'm not going to try to catch up too much but I do want to give you a little update on Will and HBOT, aka the spaceship! I really think Will is starting to be more observant, he just seems more interested in his surroundings.  He might comment on the colors on a video he's watching or the snow on the ground.  He also asked me about a smell earlier in the week.  I never remember him saying anything about smells!  Another time we were driving in the car, a song came on the radio that I liked so I started to whistle.  Usually Will rides quietly in the car until he wants a snack or he drops his toy, but that day within seconds after I started whistling he said "Hey...