Will Is One!

Happy Birthday Will!  It is so hard to believe that it has been a year since Will was born.  It has been such a crazy year and one that at times seemed to crawl along and yet at other times flew by.  Our lives are so completely different than they were this time a year ago...but we wouldn't trade it for anything:)  We love our little Will-a-bean and can't wait to see all that he will accomplish in his second wonderful year!
Will has three birthdays this year...the first was this past weekend in Wooster with Grandma and Grandpa Crandall and Aunt Amelia and some of our good friends.  Will had a fun party with his two little girlfriends and he ate some of his cupcake and opened lots of presents.  It was a great day!
We have party number two this weekend in Fort Wayne with Gaga and Papa Brough and the gang.  We can't wait to celebrate again:)
Will's birthday definitely brings back a lot of good and sad memories of a year ago and reminds me of where I was and where I thought I was going and where I am now.  I have been writing Will's Birth Story a little bit at a time, for a couple weeks now and it has been very therapeutic!  I hope to share it, but I must admit it is mostly for my self that I write it.  It is hard to think about Will's birth day and think of the sadness surrounding that day.  In a way, I feel that writing it down releases me from some of the guilt that I have about those feelings.  Will's birthday is, and always will be a difficult day and one filled with a range of emotions:)
For now let's celebrate!  Here are some pictures from his birthday party this weekend!

Will's Trip to Siesta Key FL

 Will's first time in the ocean!

 He loved playing in the sand as long as the waves did not knock him over:)

 Ron and I took a picture by this tree several years ago when we were in Siesta Key.

 He was getting all the ladies with his hot body!

 Will and daddy:)

 Playing on the beach.  Will liked to taste the sand too:)

Long day at the beach.

We had a wonderful vacation.  It was so nice to get away for a week and not make any phone calls or go to any appointments.  We were very lucky to be able to use Ron's Uncle's condo for the week and enjoy some rest, sunshine and sand.  It was very hard to come back:)

Prayers for Averi

Sorry I still haven't gotten any vacation pictures up...this little boy has been keeping me very busy!  I did want to write a quick note to ask for prayers for one of Will's little friends from our support group named Averi.  If any of you have clicked on the links on the left of this page you may already have been to their blog, but if not please visit the 'Can't Keep Me Down' Blog and read all about her.  Averi is a very sweet little girl going through the battle of her life.  In just 18 months this little has endured more than most of us will go through in a lifetime:(  She has an amazing spirit and comes from a beautiful family that has more strength and faith than you can imagine.  Please say prayers for them as she is in PICU for the third time in a month.  I am heartbroken for them and all they have had to endure.  Keep fighting Averi!

All I Want For Halloween...

 Is my two front teeth...And I got them!

 Happy Halloween!

 Trick or Treating at Boo at the Zoo:)

Enjoying some of my candy.

Vacation pictures coming soon!

Documentaries

In honor of Down syndrome awareness month I would like to tell everyone about two exciting documentaries.
The first is 'Monica and David'...it is a documentary about a young couple whom both have DS and it follows them as they get married.  They are amazing individuals and I look forward to viewing it soon with some friends from our support group.  It airs on HBO on 10.23.10 at 9:30 AM ET and 10.26.10 at 2:15 PM ET.
http://www.monicaanddavid.com/
The second is 'Brave in the Attempt'...it is a documentary about people with disabilities and why many are fearful and uncomfortable around them.  It follows a Special Olympics basketball team in their quest to win gold.  It airs on the Documentary Channel which is on Dish Network Channel 197 and Direct TV Channel 267 at 8:00 and 1:00 AM on 10.21.10.  I don't have access to this channel but if anyone does and would be willing to burn it to a CD, I would love to view it.
http://www.documentarychannel.com/movie.php?currID=9008&t=Brave-In-The-Attempt
Both of these documentaries are important because they look more closely into the lives of individuals with disabilities and show us that they are more like us than they are different.  If we all tried to see how these amazing people are like us, instead of how they are different from us, the world would be so much better for all of us.  I know it is hard to do this at times but I challenge you all to try to do so, and reach out to someone in your life that may have a disability and talk to them.  I struggle with this at times too because it is sometimes difficult to come out of our comfort zone and reach out.  Since Will has been in my life I have gained a whole new perspective.  Now I always try to keep in mind that these individuals are someone's 'Will'.  Someone out there loves them and for this reason alone they deserve our respect.

Pumpkins and Family

Fall Fun

Sorry it has been so long since the last post...we have been so busy!  Will is doing many new things and has had lots of fun along the way:)

So since the Buddy Walk...we have been meeting with several new therapists with Franklin County as part of our Home Based Services Program, working on playing with different toys, visiting with family and friends, getting used to our ear tubes and working on some teeth!  We are still meeting with our private therapist too and we are making some good progress.  Will is getting himself in and out of sit often now and getting closer to crawling.  He is starting to not mind being on all fours and is rocking back and forth a little while doing so.  He and daddy have been playing the piano together and he rolls his truck back and forth with me and with Ava and Jonas.  We had a minor set back on the ear tube front and have been using eardrops again to fight a little infection.  We have also been battling a rash around his face, but mostly we have been pretty healthy this fall.  We went home to see Papa and Gaga Brough and to attend a cousin's wedding and we visited the Fort Wayne Zoo while we were there.  We also met with our friend, that is also a PT and a great mom, and got a lot more new advice from her.  Oh and a little white tip of a tooth is showing!  You can't really see it yet, but you can feel it:)

Our therapies are really getting going with the Franklin County Board of Developmental Disabilities Home Based Program (from here on we will call them FCBDD!)  We have met twice with Will's Early Intervention Teacher (Teacher) and Physical Therapist (PT) and once with the Speech Therapist (ST) and once with the Occupational Therapist (OT).  We really like them all and they have given us a lot to work on:)  His Teacher oversees Will's Team and works on things like using toys correctly and playing baby games and generally has input on all fronts.  The FCBDD PT is working on many of the same things that our private PT is working on, and that mostly involves getting in and out of sit, getting on all fours and putting weight on his legs.  The ST gave us some games and activities to play with Will to encourage different sounds and some massages and exercies to use to build up those oral muscles.  The OT had the most new activites for us to work on ranging from drinking and eating exercies, to building up core muscles, to using different methods to gain sensory recognition.  It has all been a lot to take in and is cause for my crazy mind and busy feet!

We had a great weekend in Fort Wayne and saw many friends and family.  We had a fun trip to the Zoo with Gaga and the kids.  Will liked the lions and the giraffes but otherwise just enjoyed the ride:)  He did NOT enjoy the huge draft horse that 'neighed' in his ear and casued a major meltdown.  It seems everything is a lot louder now to Will, and he frightens more now than he did pre-tubes!  We had fun getting pumpkins at the local farm too and even ate some straw...which I hear is good source of protein:)

We still have not made much progress with drinking and eating and we are getting lots of mixed advice about it.  Will is still not a fan of any vegetables...which I suppose is karma rearing its ugly head!  I love vegetables now...but did not as a kid.  He still struggles to get food from his fingers to his mouth although he is getting better.  He refuses to swallow anything liquid we put in his mouth unless it is by bottle.  He spits and sputters and gets really mad when we squeeze the juice box with water in his mouth.  If not karma...red-headed stubborness is rearing its head:)

We have a lot more coming up in the next several weeks with therapies and appointments.  We also have a playgroup at the pumpkin patch and a Bartosch family cookout this weekend.  We are then heading to Siesta Key FL for a much needed family vacation next week.  So it may be a couple weeks until you hear about all that is new with Will, but we will be rested and renewed when we get back and hopefully be sporting a new tan!

Happy Fall!

Buddy Walk 2010

Buddy Walk 2010 was a huge success!  Team 'Will's Way' raised $2100 for DSACO thanks to all the support of our wonderful family and friends.  Thank you!
The first picture is of our playgroup friends, the second picture is of Team 'Will's Way', and the third is a family picture after the walk:)

Donation

I just found out that a very good friend had a fundraiser at work today to benefit DSACO and it raised $200 for the organization!  So although it went straight to DSACO, it was really a donation to Will's Way:)  We are so grateful to all our wonderful friends.  Thank you:)

Tubes and Trusts

Well I may have spoke too soon about Will's tubes and how he is handling them.  He was great initially and back to himself almost immediately, but the last several days he has not been so happy:(  He has just been more fussy than normal and not eating all that well and Will is not normally an unhappy guy!  So I am not sure what to think, but I will have to follow up with the ENT sooner rather than later and hope it is nothing serious.  I am really hoping it is just a tooth.  Like all else, teeth are delayed in babies with Down syndrome.  Will has no teeth right now and we may not see one for several more months, but we keep checking and hoping for one soon. 
We had a DSACO meeting last night and there was a financial planner there that specializes in planning for individuals with special needs.  So it was a lot to take in...wills, life insurance, special needs trusts...and how all of this can affect Will's eligability with government aid and how we need to plan for his future.  So if any of you were planning on giving Will your life savings...hold off for now:)  We need to set up a special needs trust instead of a regular savings account or college savings account and this is going to be a major undertaking for us because it must involve a lawyer that deals with special needs estate planning.  So like all necessary evils in life, it is going to be complicated and expensive just to set it up.  One more thing to worry about:(

On a more positive note, we are very excited about the Buddy Walk this weekend!  We are making all the plans for our tailgate and going to pick up our Will's Way T-shirts today.  We were talking to all of our friends last night about setting up our tents together and getting a group picture.  I think it will be an emotion-filled, inspiring, uplifting and all around wonderful day!  Thanks again to all that have supported Will's Team for the walk.  It is going to be a great event!!!
Will's newest thing is that he wants to patty cake with you...so he and daddy are clapping in this picture:)

Applesauce!

Will is doing very well since his surgery on Thursday.  He was back to his happy self by Friday.  On Saturday daddy went and ran a marathon in Michigan but Will and mommy stayed in town and went to our monthly playgroup and played with our friends!  Today we went apple picking in Pataskala and got apples, cider and kettle corn...yum!  We are going to make lots of applesauce:)

Is My Butt Showing?

Will's ear tube surgery went very well today.  It was a long day but one we were ready to take on.  We got to Children's Hospital bright and early (actually it was still dark!) with a very hungry and very confused little boy.  We were in the surgery prep room for almost two hours while many different doctors came in and asked all the same questions and took all the same vitals and all told us how cute our boy was:)  Ron and I passed him back and forth and took him to the toy room to keep him occupied and keep his mind off of that bottle in between doctors.  So they finally took him back around 7:45 and the doctor came out to find us and Gaga Judie in the waiting room around 8:15 to tell us all had gone well.  He was extremely grumpy, confused, hungry and down right mad when we got back to the recovery room.  Once the pain medication kicked in and he calmed down, they gave us our instructions and off we went.  He came home and ate a bottle and took a nap and by this afternoon was his normal smiley self:)  The only major side effect so far is that he has been doing raspberries (making sounds with his tongue and lips) all afternoon.  So I think either his ears itch or feel funny or we all sound just a little bit loud and strange.  It is actually pretty funny!  We will follow up with Dr. Elmaraghy in his clinic in a month and probably have to stay out of non-chlorinated water but otherwise the tubes shouldn't affect our everyday lives.  So we are tired from our long day but happy that we made it past another hurdle and can put this day behind us! 

How cute are these little surgery gowns!  Uncle Ricky texted me during surgery to remind me to make sure William's butt wasn't showing:)

Clap Your Hands

I finally got a good video of Will showing off his clapping skills:) He also sneaks in a 'so big' in the beginning! Enjoy:)

Also, DSACO extended the deadline for the Buddy Walk Registration until next Sunday, September 19, 2010. So if you haven't registered or donated yet and would still like to, go to http://www.columbusbuddywalk.org/ and find team 'Will's Way' in the box on the right side to do so. Thank you again to all that have given to Will's team. Your love and support carries us:)

Bump in the Road

We did not get great news at the ENT Clinic:( Will is going to have ear tubes put in next Thursday 9.16.10. Although I know this is just a minor bump in the road...it is still a bump. A very unwanted bump! It is a simple and routine surgery, but it is surgery, and he is only 9 months old. It is the anesthesia that bothers me the most, but after holding him down screaming for 15 minutes while the ENT doctor examined and scraped at his ears, I am thankful that he won't feel any pain during the surgery. Will is going to be in good hands. The doctor said it will be quick and easy and he will be mostly recovered by the next day. It seems Will is fairly young to be getting tubes already but the doctor felt he needed to be aggressive since Will doesn't need any more obstacles in the way of his development, especially in regard to speech and hearing. I agree.

Please keep us in your prayers next Thursday and always:)

Updates Galore!

Will has been a very busy boy lately and has lots of new things to share! Since I wrote last Will has had many appointments, therapies and lots of new accomplishments.
Will stopped by to see his favorite Doc for his 9-month well baby check and he weighed 19 pounds and is up to 28 inches long. All was well, so he had his immunizations and we bothered Dr. Parsons with more silly questions and off we went! She seemed happy with all his progress and reminded me yet again that Will is more alike than different from a typical 9-month old baby boy....which also reminded me that this is why we love Dr. Parsons!

We have a Physical Therapy student from OSU that is going to be hanging out with our family for the next several months and she joined us for this appointment. She is working on her Early Intervention certificate and part of that is spending time with a family like ours to see how Will's diagnosis affects our daily lives. So we are happy to share Will and our life with Susie so that she can learn more about the crazy life we live with all our doctor appointments, outpatient therapies, daily home therapies, meetings, social events and everyday life with a baby with Down syndrome. Although Susie does know a bit about all of this, she will be reminded of how crazy it can be after spending the semester with us!

We were accepted into the Franklin County Home Services Program a couple of weeks ago and had our first meeting with Will's Early Intervention Teacher and his home-based Physical Therapist. The program is through the Franklin County Board of Developmental Disabilities and provides children with developmental delays like Will with the necessary services and therapies in our home on a regular basis. We have been waiting for 9+ months to get these services started so we were very happy to get going! In general there will be an Early Intervention Teacher, an OT, a PT and a Speech Therapist come to the house monthly to work with Will. We really liked the teacher and are excited to go down this newest path!

We have an appointment with the pediatric ENT at Children's Hospital tomorrow to look closer at his left ear which he again did not pass the hearing test on. We both are not looking forward to it! It may mean a bit of pain for both Will and mommy:(

We also went to a Columbus Clippers game with our DSACO friends, a wedding reception in Indiana, saw Ava off to her first day of preschool, had a DS playgroup at the splash pad at Bunny Park and spent Labor Day at Adams Lake with Gaga, Papa and Uncle Ricky. Will has started clapping and putting up his hands for 'So Big' and has waved a couple times (it may be a mistake but we will take it!)! He continues to get even better at sitting and reaching for toys and is increasingly vocal with 'dada' and 'baba'. Still not 'mama' yet but it will be that much more special when it comes:) He is starting to play more with his toys and will sit and play independently for long periods of time. He is still not loving his veggies...even the homemade ones with LOTS of butter...but has been enjoying Cheeries, chunks of different table foods, most pureed fruits and even some scrambled eggs.

Last but certainly not least...we hit our goal of $1000 for the Buddy Walk! We are so very grateful for and inspired by all of your support for Will and this wonderful organization! Thank You!!! So if you are still planning on walking with us and have not yet signed up, you need to sign up by this Sunday 9.12, if you want your personalized Will's Way shirt. We are getting very excited for the walk and are planning a tailgate for all those that can join us. I know many of you will be there in spirit and we will be thinking of you as we walk:)

Thank You

Thank you to all of the wonderful people that have registered and donated to Team Will's Way. We are getting much closer to our goal of $1000 thanks to your support. I hope you all know what this means to our family. I can't not thank you enough for accepting and loving this little boy that we think the world of:)

OSU PT Lab Experience

Last week Will participated in an OSU Physical Therapy class lab session. The lab is part of the course work that the Physical Therapy students have to complete and was an hour long session in which Will got tossed around by 4 second year PT students in an effort to learn more about pediatric Physical Therapy. We volunteered our time so that we could get some free PT and viewed it as a good chance to network and possibly learn something new. We brought Will's friend Sam along as well since his mom had to work:(

So the students played with Will, and with Sam, and then tried different exercises with him and discussed which direction they would take his therapy if he was their patient. It was interesting and fun and since I am trying to soak up as much information as possible I figured it couldn't hurt:) (Although it would have hurt if Meredith hadn't agreed to help me get the two boys down there with Ava and Jonas in tow...since I hurt my shoulder last week and OSU's campus is not exactly easy to navigate with a double stroller...thank God for sisters!)

I also think that the more exposure Will has to other people the better...but more importantly the more exposure other people have to Will, the more accepting they will be of him, and all people with Down syndrome and other disabilities:) It was a win, win!

Buddy Walk 2010

The Columbus Buddy walk is October 3, 2010!

This walk benefits the Down Syndrome Association of Central Ohio and promotes awareness and acceptance of all individuals with Down Syndrome. It is a great chance to show your love, support and acceptance of Will and also to raise money for this organization that provides valuable programs and resources for our family and many others. DSACO has provided us with much needed support and resources for the last 8 months and we are so grateful to them.

We would be delighted if you could join us for the walk, but if you can't, we would also greatly appreciate any donation that you are able to give.

The 1-mile walk starts at 10am and there are fun activities for the kids after we walk. We hope to set up a tailgate before the walk, as is the tradition, and celebrate Will's life. Please go to http://www.columbusbuddywalk.org/ to register to walk with Will or to donate in Will's name, by choosing 'Team Will's Way' at the top of your registration or donation page.

Thank you for loving Will and for supporting our family:)

Indians Game

Will's second Cleveland Indians game in his short little life:)

Two Buddies

Will and his friend Sam:) Sam and his mom are great and have helped us navigate this strange and crazy world of doctors, therapies and the system that we find ourselves in. We are lucky to have met them and so enjoy spending time with them!