Baseball

Will has been a big baseball fan lately!  We went to the Columbus Clippers game 2 weekends ago and the Indians game this past weekend.  Both were fun although the Indians game got rained out after a 4 hour delay:(   Will loves to cheer at the games and seems to know just when to do it!

Intently watching the Clippers!  (For those that have not seen Ron's baby pictures...this is EXACTLY what he looked like!)

Almost falling asleep at the Indians game:(  Go figure!

I think some people might be surprised by the fact that we do normal, everday stuff with Will.  I think I was one of these people before he came into our lives.  The truth is that for most families with special children, their child's disability does not affect all or even most parts of their life.  It just becomes part of who they are now and maybe adds to their daily work load with therapies and appointments but does not prevent them from doing the things they enjoy.  On an everyday basis Down syndrome does not 'impact' our lives.  We do everything we did before we had Will but now we have a little buddy to share it all with! 

Getting Closer...

Will's private PT is getting ready to go on maternity leave and we are sad to see her go but so happy to see her start her own journey with her little one.  She has been great with Will even on his most challenging days!  I am sure he is not her easiest patient to deal with but she always stays patient with him when all he wants to do is throw all the toys and explore around the gym and yet firm with him when he tries to whine his way out of doing something:)  Here are some pictures of her working so hard with Will and having a little fun too!

Will does not always like to walk on the treadmill even though he gets to watch Elmo cartoons on the DVD player:(  Jen and I both try very hard to keep him excited and motivated!

Last week Will decided he would take a few steps but in the version I got on video he kept one foot planted so all he did was turn in a circle:)  For the past several weeks he has been taking one step at a time but last Thursday was the first time he has done several steps in a row!  He is getting closer and closer!

School Starts Soon!

Will is going to be starting 'school' this fall and it will be here before we know it!  His teacher came to the house earlier this week to meet Will and I and she was very sweet.  He will be going to Early Intervention School two days a week for about three hours in the morning.  He will be attending the Childhood League Center and will get all of his therapies there in place of his home based therapies.  The classroom he is in is all 12-36 month old kiddos and 4 of them are special needs 4 are typically developing.  So he will have a great chance to play with kids of all abilities while he receives therapy!  The organization is great and if I haven't put up their website before it is... http://www.childhoodleague.org/ .  It is a privately funded organization but Will's tuition will be covered by the county.  We feel very lucky to have Will attend school here since it is hard to get into.  It has adorable little person classrooms, each with separate observation rooms and packed full of toys and activities.  It has both an outdoor play gym and an indoor gym.  It also has separate therapy rooms and a gathering place for families.  It is hard to imagine him being sent off to school but I can't imagine a better place for him to be!
Now for a quick update on what Will has been doing this summer.  I am so happy to report that Will FINALLY passed a hearing test!  So, at least for now, Will does not need any hearing aids.  I have never doubted that he hears us, but he just could not pass that test!  Everyone at the audiologist office was very happy for Will.
Will has also been taking a music class this summer.  It too is a great organization called We Joy Sing and their website is... http://www.wejoysing.com/ .  He was pretty shy the first class and mostly observed the other children.  This week however he was much more into it.  He clapped his hands, and beat on the drum and really liked to ring the triangle although he was also a fan of throwing the striker for the triangle on the ground.  He has been slapping his hands on his knees to the beat of the music on the radio where ever we go since last week:)
In the last several weeks Will has gone to the pool with the Brown's, attended Uncle Jake's graduation party, gone to a Brough family wedding, hung out with Grandma and Grandpa Crandall at the fair and will be starting swim lessons next week and going to another wedding this weekend.  He is a very busy little man!
Please remember to sign up to walk with Will at our second Columbus Buddy Walk.  The walk is 9.18.11 at Columbus Crew Stadium.  It is a lot of fun and means a lot to us to have people come and walk with us and support Will.  Register or donate at... http://www.columbusbuddywalk.org/ .  Thank you!!!

Rose Colored Glasses

Here is a video of Will eating with a fork!

In my frustration with Will and his horrible eating habits I have decided to take on the untensil training battle.  My hope is that in his struggle for independence, he will want to feed himself even if it is a green bean.  As you can see he does pretty well with the fork as long as I stab the food, but gets very frustrated when he tries to stab it himself.  He also very quickly figured out that just because I hand it to him does not mean he has to eat it and has been pulling off undesireable food like vegetables when I give them to him.  He is so challenging with eating and drinking!!!  At least his favorite food is veggie burgers:)

Which leads to what I feel I need to say about this blog.  I CHOOSE to put up mostly happy pictures of Will smiling and doing cute things.  That is the great part about this blog-therapy...you can let the world in on the parts you want them to know and leave out all the yucky stuff.  Life with Will is great...but is definately not always rosy.  I am not disillusioned into thinking that we don't have big issues to face, nor am I not in touch with reality.  I choose to put up happy pictures of Will smiling and of his big accomplishments because it is a frame of mind for me.  If I let myself go to that negative place and dwell on all that Will is struggling with, it is really hard to find my way back.  I have days where I want to literally beat my head against a wall when he won't sign 'milk' or show me where his belly is, and days when I just want to cry because I see children half his age walking and talking.  The truth is that it really stinks that Will has to work twice as hard to accomplish everything and that this will never go away.  Every time I go to that bad place though, it takes me twice as long to come back as it did the time before.  So I try to put on rose colored glasses as much as I can for my own sanity and for Will's well being:)  I do my best everyday to focus on the positive and having positive people around me really helps with that.  I just had to put that out there so it was clear that I am not trying to make my life seem better or easier than it is because our day to day struggles are very real.  Having said all of that...I wouldn't change even one little chromosome about Will!  Will is amazing and makes my life so much better than I ever imagined it could be...with or without the veggies:)



Zoo Day with Uncle Ricky

Will went to the zoo with Uncle Ricky and the kids a couple weeks back.  Will had fun watching the polar bears splash in the water, the elephants eating hay and the gorillas swinging and playing.  Most of all though he enjoyed the train ride.  He clapped and laughed the whole way:)  In general he loves the zoo but especially enjoys the bigger animals!  Thanks Uncle Ricky for hanging with us for the day!

Fourth Fun

Will had a fun 4th of July at the lake!  He played in his pool, went on the boat and splashed just a little bit in the lake:)  He made Gaga, Papa and Uncle Ricky laugh all weekend long with his new and improved fake laugh.  He gets it going for so long he can't catch his breath!  I am trying to get it on video:)

Will likes to hear his own voice and yells into the bucket at himself:)



Hey where did that guy in the bucket go?

Took a nap with Daddy and splashed with Mommy.

Fun weekend at the lake!

Otherwise Will has been doing well.  He finally passed a hearing test!  We are all very excited about this since at least for now it means no hearing aids.  I have never doubted that Will hears us because he almost always responds when you call his name, unless you are telling him 'no' and that is his selective hearing at work:)  But despite that gut feeling of mine, the little guy just could not pass a hearing test at certain frequencies before or after the ear tubes:(  Well he passed this time at all frequencies and did great in the sound booth!  The doctors, nurses and audiologist were all very happy too!

Will also recently learned where his belly is:)  He has had his head down pat for months but whenever we asked where his belly was he would just look at us.  He found it!  This is a little thing to most that feels like a huge accomplishment for us:)

Will figured out how to get down steps as well.  We have been practicing this task for close to 4 months now and after several falls and many tears, Will finally figured out how to go down backwards and is quite speedy at it now!  I just keep saying...Will's Way!!!

And last but not least, the Buddy Walk is coming up!  Sign up to walk with Will on 9.18.11!  If you can't make it to the walk you can also donate to Will's team to help us reach our goal of $2100 and support the organization that has helped us tremendously the past 18 months!  Thanks so much to all of you that love Will and support us in so many ways!

http://www.columbusbuddywalk.org/    Search the profiles for Team Will's Way to register or donate!

Father's Day at the Lake

Will had a fun weekend at the lake for Father's Day.  He can't actually go in the lake because of his ear tubes, so he played in the pool filled with bottled water:)  Will can only go in treated, chlorinated water with his ear tubes unless he has custom ear molds to block out any water.  Maybe someday I will have the time to go and get the impressions done to have them made:(  For now, the pool was very entertaining!

Will is getting so close to taking a step!  He pulls himself up on EVERYTHING, lets go and leans foward like he is going to step, but then usually plops to his butt!  He is getting stronger and braver every day!  Slow and steady wins the race :)

2011 Columbus Buddy Walk!

The 2011 Columbus Buddy Walk is Sunday, September 18!  Visit Team 'Will's Way' page today to register or donate!  We appreciate all your love and support:)  http://www.columbusbuddywalk.org/

Big Boy

So now Will has decided he is going to take the whole straw drinking issue into his own hands!  He started doing this yesterday while getting impatient with me:)

Will is getting so big and as excited as I am to see him make such great progress, part of me wants him to stay a baby forever!  I know this is a typical feeling that many parents have, but part of it is also because of my fear of his future.  The older he gets the less like his peers he will be, and I just still have a hard time with that.  Right now our life is really pretty 'normal' and Will does most everything that his peers do.  I try not to let myself think too far and just continue to take one day at a time.  For now we will sit back and sip our apple juice:)
Also take note of the end of the video...he is about ready to drop it off the tray!  This is no accident, he and I argue about this often.  Mr. Will is ornery!

Therapy Fun

Heres a video of Will and Daddy doing some therapy with the ball.  Depending on Will's mood therapy can either be a little too much fun and not enough work, or miserable for everyone involved.  As you can see Will loves to bounce on the ball!

Working on the ball helps to strengthen Will's core.  It is amazing how many times I have been told that core strength will help Will with something.  Core strength is key to walking, talking, eating and most everything else!  So sometimes we play on the ball and sometimes we work on the ball but all of it is good!

What the future may hold...

Although it is sometimes difficult for me to think too far into Will's future...articles like these give me a lot of hope.  If programs like this are getting started now, just imagine what is possible:)

Going to College
Job Training

Memorial Day Fun

Will had a fun and busy weekend!  We went to the zoo, attended a few cookouts, played in the pool, had some ice cream and took a walk at the park! 

Will trying not to splash in the pool with Ava and Jonas since we can't get our ears wet until Tuesday:(

Will playing with Harper, his girlfriend from Colorado.  Will thinks Harper is pretty cute and she really likes his toys:)

Will watching the Bison with daddy at Batelle-Darby Creek Metro Park.

Hot, tired baby after a long weekend!  So starts another miserable summer without air conditioning:(  What happened to spring?

Go Indians!

Will went to his 3rd Indians game this weekend and had a great time!  He was really good and clapped along with the crowd:)  Aunt Amelia even taught him how to give a high five!

Will also got to play with his friend Jillian on Saturday!  They had a lot of fun playing with all of Jillian's toys and tried their hardest to share.  Jillian read Will a book and even tried to push him around in her little car:)

Now for a quick update.  Will had his 18 month checkup on Friday.  Aside from yet another bout of thrush, he had a good checkup.  We were glad to hear that Dr. Parsons thought his ears looked good despite his grouching at me the rest of the week and she was happy with his weight, height, heart, ect.  We have officially given up the bottle at night, which means we have to come up with another way to get milk of magnesium for the ever-present constipation:(  We have tried with a syringe that past 2 nights and Will was not digging it.  This may be because it tastes terrible or may be because by the time we get to the milk of magnesium, he has already been held down for eardrops and thrush medicine!  Will is still drinking out of the straw like a champ!  I couldn't be any happier:)  He drank an entire honeybear of watered down apple juice at the game so I know he can do thin liquids out of the straw as well.  Will also has been walking quite a bit behind his little car.  It is a little rough, but it is a good start and he has fun getting back and forth with it and  having Ron and I cheer him on:)

Tube Time

Ear tube surgery went great!  We were there and gone in just 2 hours this time and everything went smoothly.  Will was pretty grouchy and tired until about lunch but was playing and wrestling with Ava by this afternoon.  He even managed to scratch poor Miss Lillian:(  The doctor replaced the left tube but just cleaned the right one.  The only bad news is that the doc was not so keen on Will continuing his swim class so he is done with swimming for now:( 

Ear Tubes Take 2!

Will is having his ear tubes replaced tomorrow.  He was at the ENT last week and upon examination of his ears they decided that the left one is plugged so they need to go in and clean his ears and replace both tubes.  They concluded this AFTER he screamed his head off for fifteen minutes while they tried to clear them in the office:(  The good news is that his hearing was really not being affected based on his audiology screen.  Also since we have been through this before, we know it really is an easy surgery.
Will also went to the new Endocrinologist at Children's last week.  She was great.  She explained everything in a clear, concise way and answered all of my questions.  Since we were back at Children's too, everything flowed together since they already have his entire life history in their system.  I am happy we made the switch!  We got his labs back right away and all his bloodwork was in the normal range, so we are still doing well with the current dose of thyroid medicine.  So we will keep doing what we are doing and check back every couple months.
So please say a prayer for Will tomorrow.  Although I know this is a quick and minor surgery, anything that involves anesthesia and my baby makes me a little uneasy.  Will is a trooper...I am sure he will be back to knocking things off the coffee table or removing EVERYTHING from the kitchen cabinets by lunchtime!

Lillian Louise

I have a new little love...her name is Lillian Louise!

My sister had her baby yesterday.  Everyone is very excited about Lillian, but especially Ava since Will is getting a little too big to hold and is more into wrestling with Ava than cuddling with her!  It is hard to believe that Will was that small just 18 months ago.  It was a little hard for me to visit and see those familiar and dreaded hospital hallways and to realize what I didn't get to experience by having Will in NICU and all the saddness that I went through those first days. 
Will is continuing to drink out of the straw like a champ, so I posted a video as proof since I hardly believe it myself!

Drinking From a Straw...Finally!

Will drank 6 oz from a straw today!  With just a little push on the honey bear (straw cup that you can draw liquid into by squeezing it) he drank his chocolate milk like he had been doing it all his life:)  I have been using the honey bear on and off for about 6 months now with no success but I guess he was probably so sick of me trying it every couple of weeks that he thought he would just give in.  Proof positve that Will does things in his time...not because me or anyone else wants him to.  I have no idea where he gets this stubborness but I am thrilled that he decided it was time!

Cowboy Will

Will has had an eventful week!  This past weekend we spent in Nashville TN hanging out in 'Honky Tonks' and watching daddy run the Country Music Marathon.  Will really loved the live music and danced and clapped along with the tunes:)

Will also has been standing himself up in his bed!  This falls under the 'most parents hardly notice when their kid does this, but we celebrate it at our house' catagory.  Will continues to pull himself up on more things around the house and is getting braver with letting go.  We couldn't be happier when he pulls stuff down off of something because he is standing himself up to explore!

Will's Peek-A-Boo skills are also getting better:)  He is finally finding his face and almost has mastered finding his eyes!  He loves to play this game.

Will also started his swim class tonight.  He loved the pool!  He kicked and splashed and even went under water...not by choice!  I think Will is going to be a little fish:)

This is BEFORE daddy dunked me...

This is AFTER daddy dunked me...

Will also went to the ENT today.  We got some good news and some bad news.  Good news is that his Audiology test showed that while he still has mild hearing loss, it is not getting any worse.  They are still unable to tell at Will's age which ear it is and exactly what frequencies are affected but we know he hears us and the test proved that.  The bad news is that the second test that they did on him confirmed that his left ear tube is plugged and will have to be replaced:(  Replaced, as in another ear tube surgery.  So he will have surgery again in a couple days to replace the left and possibly the right ear tube.  Which I know from before is a quick and easy procedure but the timing isn't the best.  Not sure there is ever a good time:(  Although after holding him down and hearing him wail today while they tried to unplug it in the office, I will take the anesthesia anyday!  Poor guy:(
We also have lots of fun things coming up as well...second Mother's Day and Father's Day, Graduations, Weddings, friends visiting, lake season, a new baby cousin...we will keep everyone updated on all our exciting adventures!