On the down hill side of the climb (this one anyway)

We are finishing week 9 this week which means we only have 4 weeks left!!  Did you hear me squeal?  As my sweet friend said, we are down to counting on one hand!!  So it looks like I will blog about every 4 weeks.  I don't know how people blog for a living.  My son is going through some of the most crucial times of his development and I can't find the words to write about it. 

Matt and I felt like we weren't seeing the same dramatic changes this year that we did last.  I took our concerns to Dr. Pete and Jessica and they listened.  Dr. Pete explained that Drew's right hemisphere was so underdeveloped you could drive a mack truck through there and see results.  This year we are getting into deeper pathways and connections and that things we think are no big deal really are or that we don't even recognize some changes. After an almost hour long discussion we agreed that Drew would probably benefit from more intense therapy so they have been challenging him more than ever!  And he is responding very well!  I love that I can go to them and voice my concerns and have them respond with a solution rather than brushing me off and saying that they are doing every thing they can.  We have been in the BB program for a year and a half with 6 of those months in the center 4 times a week.  I have become attached to the people there and know without a doubt that they are doing everything they can to help my sweet angel!  Dr. Pete has been in the center more this year and I love talking to him about the brain (especially Drew's).  I love that him and the staff at Roswell are so passionate about what they do.  I wish I could put them in my back pocket so they could help him every minute of every day!!

The past two weeks Drew has gotten 3 stars!!  2 of those were in one week!

I was finally able to get him into swimming lessons.  He loves the pool so much!  Today was his second lesson.  He swam the length (mostly) of a 50 meter pool and back.  The first video is from his first lesson and the second one is one of the first  times he jumped in without having to hold someones hand when we were swimming at Taylor's last weekend.

This picture kills me!  He looks so big and like a normal kid!  For some reason he's decided that he wants to wear his Monsters University hat all the time.  He had it on backwards but then turned it around before we went into the hotel. 

He sings all the time now.  And not just songs from movies.  He sings along with the radio sometimes too. It's kind of funny he will say "you're listening to the Message on Sirius XM."

Matt is home being Mr. Mom with Abby.   It's been really tough for him to try to juggle getting her to swimming, volleyball, church and still work full time and take care of the farm.  Most nights they don't get to sit down until 10pm.  He's had to use some of his vacation time but we agreed that it wasn't fair for Abby to give up another summer.  Besides she made the high school (gulp, did I just say high school?!) volleyball team and practices started June 1st.  She would not have been able to try out if she was down here with me.  So now she is participating in both of the sports she loves and working hard at both of them.  I am so proud of her!

I feel like all of these posts sound the same...like a broken record of gibberish!

One thing I know for sure is that this summer has renewed my resolve to bring a Brain Balance Center to Knoxville!!  We can't continue to do this every summer (not only financially but emotionally too) and I know that Drew will need to be in the program for a while! 

Again, you can sign up to receive e-mail notifications of new posts at the top right of the page.

Thank you for taking the time to read about Drew and his journey.  Please continue to pray for our family.

Until next time,

Are We There Yet?!

It's been 4 weeks since the last post.  I'm having a really hard time writing this year mostly because we aren't doing as much fun stuff.  I sure miss Amanda and Adeline! We are wrapping up week 6 tomorrow.  Which leaves us 7 more weeks to go!  I think I can, I think I can, I think I can...

About 3 weeks ago we went to the Center for Puppetry Arts and saw Dr. Bigelow's Tall Tales Puppet Show featuring Paul Bunyan.  It definitely wasn't as good as The Cat in the Hat. 

Monkey Joe's is still his favorite hang out!

 

Last week Abby came down with us.  We went bowling on Wednesday.  I saw a big difference in Drew from bowling last year.  Last year he would push the ball off the ramp and run and sit back down.  Pretty much couldn't care less.  This year he started off using the ramp and after a couple turns wanted to do it himself.  He would watch the ball go down the alley saying come on, come on.  It was so awesome to watch!  Of course that lasted about a game and a half.  We signed up for Kids Bowl Free. Kids get 2 free games every day all summer!!  If you haven't done it, you should.  Anyway, when we checked in the guy gave us another free game.  By the third game he was done!  Then it was on to Brain Balance, Monkey Joe's and an evening swim!

 

 

Our daily routine pretty much consists of morning brain games, a swim at the Y, BB, Monkey Joe's, an evening swim and more brain games!

This year seems to be especially hard on me.  I do not handle stress very well.  It turns me into an emotional wreck.  Right now I have emotional bi-polar disease (I just made that up by the way).  One minute I'm thinking I can do this and the next I'm thinking I don't what the heck I'm doing!  I'm crying all the time.  A friend asked how it was going in Sunday School this past Sunday and I couldn't even answer her.  I just started crying and pretty much cried for the next couple of hours.  It is so hard to watch him want to play with other kids but not understand that they don't want to just chase him around.  I've seen both sides of tolerance in the past two days.  A mom at Monkey Joe's kept telling Drew that boys are supposed to chase girls because he kept telling the girls to chase him.  I went over and told the mom that he had Autism and had no idea what she was saying to him.  She then asked the girls if they knew what Autism was and they both said not really.  So the mom asked me to explain it to them.  Then she asked them to go play with him.  The next day a couple were playing on an iPad while their kids were playing at Monkey Joe's and Drew was looking over their shoulder.  I told him to go play and the man said he's ok.  I told him that he is not supposed to have screen time.  A little while later he came over to me and basically told me that he hoped he didn't upset me for saying that Drew was ok when I told him to go play.  I really appreciated that.  And then the polar opposite at the hotel.  Last night I took Drew down there for a swim after dinner.  A man was down there with 2 girls.  In usual Drew fashion he heads right for them.  They don't give him the time of day.  I tell him to go swim somewhere else.  The pool isn't very big so that is kind of hard to do.  The dad doesn't utter a peep.  Doesn't encourage the girls to play with Drew, doesn't say or do anything except act like an ass!  And the same thing happened tonight!!  Those of you that know me, know that I can only handle so much of that kind of stuff before I snap!  My hope is that they will be gone when we come back next week.  

On a positive note, Drew had a great day today!  He got a star in the sensory motor room and clipped up to outstanding on his behavior chart in the cognitive room.  

I will try to post more often (I know, I know, I say that all the time).  All day long I think, oh I should put that in the blog.  And by the time Drew goes to bed I am mentally drained and just can't come up with the words!

Next week is a three day week...woot, woot!!  I'm looking forward to being home for an extra day. 

If you would like to get notifications when there is a new blog post, you can sign up at the top right of the page.  I've also added the link to the GoFundMe page Taylor set up for Drew on the right side of the page.  You should at least go read what she wrote...it will make you cry.

We really appreciate everyone's love and support.  Please keep praying too!

Until Next Time

 

The Sister Edition

I know that this blog is about Drew and his progress with Brain Balance.  But I feel like I should give a little shout out to his sisters!  Recently, Taylor set up a Go Fund Me page to help cover the costs of Brain Balance and all that goes along with it.  What she wrote in the description for the fund really melted my heart.  She loves her brother so much!
 
 http://www.gofundme.com/oye2a8

I know that most people are probably thinking $5,000???  Trust me when I tell you that it costs us so much more than that!  While raising any amount of money would be so tremendously helpful, it is not necessary and we will make it no matter what! 

Taylor and Drew at Easter this year 

Abby is in 8th grade this year (eeeks!)  I made it home from GA last week in time to catch her last home volleyball game that was also 8th grade night.  I think she was happy that we made it!

8th Grade night at Volleyball.  So proud of how far she has come on the court this year!

She isn't going to come down here with us this year.  Matt and I didn't want her to lose another summer.  She is going to try out for the HS Volleyball team in May and they practice during the summer and she wants to swim summer league.  She really missed it last year. This girl adores her brother and I'm sure she will miss him!

Abby and Drew at Easter this year

As for us, we are just about through another week!  We will head home after his session tomorrow.  This week seems to have gone by a little faster than last week.  We did the usual stuff...Monkey Joe's, the indoor play place, 3 different playgrounds and Brain Balance!

I'm going to wrap it up because it's late and Drew woke up at 4 am this morning!  And since we are in one room that means I woke up at 4 am this morning!  :-/

I would love to hear from you.  Also, if you would like to receive notification when there is a new blog post you can sign up to receive an e-mail in the little box in the top right!  :-)

Until next time,

Round 2 in GA

I guess it's time to start blogging again.  Truthfully, I never should have stopped.  Drew and I have started our GA journey again for the summer.  This year we started a little earlier so that we have some summer left when we are done and we will be traveling Monday thru Thursday also giving us a little more time at home.  We are staying in an Extended Stay hotel studio this year instead of getting an apartment since it's only 3 nights.  When you say it, it doesn't sound like a long time but I'm here to tell you it feels like we've been here forever!  We have our first week under our belts now.  He has done great getting back into the routine of being at the center.  Even got his first star already.

It's been a challenge keeping him busy in the mornings.  He has been waking up around 5:30.  His sessions aren't until 2:00 on Monday and Wednesday and 1:00 on Tuesday and Thursday.  We have been to Monkey Joe's twice and went to a place that sells playground equipment. They have a showroom with a ton of play sets and a couple trampolines set up and have free open play on Wednesdays and Fridays.  We went yesterday and spent almost 3 hours there!  From there we went to BB and then to Monkey Joe's where we stayed for almost 3 hours.  6 hours of continuous play and 1 hour of therapy and you would think he would sleep in...not a chance!!

After BB today we will go home and make it just in time to catch 8th grade recognition at Abby's volleyball game!

A whole lot has happened since I last blogged on July 19th...what??  Next week I'll try to give a quick update on the past 9 months!  That should be fun for you!  :-)

Thank you all for your words of encouragement and prayers. 

Until next time,