Merry Christmas and Happy New Year!

Will had a very Merry Christmas filled with lots of love and presents!  He was so lucky to get to share a couple of days in Wooster and a couple of days in Fort Wayne for his second Christmas. We always wish we could stay longer but we had a great time sharing the season with our families!

Our family on Christmas Eve

Will opening presents on Christmas Eve

Our family on Christmas Day

The 3 turkeys on Christmas Day

The 3 turkeys with Gaga and Papa...doesn't everyone look happy:)

Santa brought Will a little car and some clothes!

Although he looks less than thrilled...he really likes for us to push him back and forth on his little car.

I guess maybe he was hoping for something else from Santa!

We hope everyone had a Merry Christmas and we wish you all a Happy New Year!  We hope the New Year brings us health, progress and happiness.  We hope the same for all of you:)

Chugging Along

Grab a cup of coffee and sit down because there is a lot of news around the Bartosch house.  Since Will's birthday we have been even busier than I could ever have imagined and we have all types of new things to report.  I thought I was so busy before Will came into our lives... now I wonder what it was that I wasted all my time doing:)
Since Will's birthday we had a 1-year old check-up with Will's pediatrician, several physical, occupational and speech therapy sessions, a couple of trips to get blood drawn, a trip to the endocrinologist and visited the Cincinnati Down syndrome Clinic.  Will is up to 22 pounds and 29.5 inches long (I will always give Will his 1/2 inches because he is going to need all he can get!).  He is mostly healthy and happy and keeps Ron and I smiling:)
Overall he has been doing well with all of his therapies and making good progress.  Some days I wish he was progressing more quickly, but Will is my daily reminder that patience is a virtue:)  He is babbling away although there are still no 'mama's' and has fun making sounds with his lips and hands.  He is eating lots of new table foods although he is very finicky.  He loves something one day, and won't even let me put it on his tray the next.  Which is my daily reminder that Will is also a 1-year old!  He is doing well with self-feeding especially when it comes to crackers and cheerios and is starting to grab for utensils and cups.  He got many cool toys for his birthday and is doing great at learning how to play with them.  He is especially good at putting balls and blocks into buckets and toys and really loves his Woody doll and toy camera.  He continues to pound away at his piano and his drums and loves to push and pull on his truck.  He is making very slow progress with drinking but we got some much needed advice today and hope to get even more in January when we see an occupational therapist at Children's Hospital that specializes in feeding issues.

Last week Will was diagnosed with a thyroid disorder.  For those of you that are in the know about thyroid issues...his TSH levels are high but the other numbers associated with the thyroid seem to be normal.  Although we do not yet know why this is, the endocrinologist put him on medicine to regulate the TSH levels.  The doctor gave me very little good information, but I did a lot of my own research online and I will try to summarize.  (So for the professionals that are reading this...don't be too critical of my analysis and feel free to correct me in the comments section:)  From what I have read, when the TSH levels (the hormone that tells your body to make thyroid hormone) are high, but the levels of actual thyroid hormone (called T3 and T4) are normal, your thyroid is still functioning and producing hormones, but is having to work twice as hard to do so.  A friend explained it to me this way...it is as if you are pushing the gas in your car because you want to go 60MPH, and your car is getting up to 60MPH, but the RPM's are really high because the engine of your car is working extra hard.  I liked that analogy:)  For kiddos birth to age 3, the thyroid has a completely different function than what it does later in life and much different than what most people think.  In babies, the thyroid and the associated hormones are key to brain development and it is mostly related to metabolism later in life.  So Will is on daily medicine, which is challenging because we have to give it to him on an empty stomach and then wait 30 minutes to feed him...and we can't explain this to him:(  I am sure soon it will just become part of his routine, but for now it is the longest 30 minutes of Will's life!

We visited the Cincinnati Down syndrome clinic today and had a great experience.  We met with the clinic's pediatrician, a social worker, an occupational and physical therapist and a speech therapist that specialized in feeding.  They had lots of good advice for us and straightened us out on the many different methods we have been using to get Will to drink out of a cup.  The clinic was very orderly and organized, the professionals were all very familiar with individuals with Ds and up on the latest research and very attentive to our concerns and questions.  They were also very specific and to the point with their recommendations and yet very compassionate about our issues.  Although we hope to go back to the Columbus Ds Clinic in an effort to help support it and improve it, we hope to visit the Cincinnati Clinic often as well!  Oh, and while the speech therapist was evaluating Will, she informed us that he is currently getting 4 teeth!  Two of which had emerged and Ron and I hadn't even noticed:)  I was a bit embarrassed and felt really badly since I have not been giving him anything for pain and wondering why he has been so grouchy!
We are also in the process of transferring our home-based therapies to the Childhood League but we won't get started until after the first of the year so I will have more to tell about that soon.
So it has been an emotional and bumpy month for us and for Will, but we are weathering the storm.  We are excited for Christmas and can't wait to see all our family and friends.  We all hope you have a very Merry Christmas and hope you will say a special prayer for us as we navigate our way through our newest road bumps:)

Will hanging out with Jillian:)

Will playing in the water table at COSI

                                                                      

Will having fun with the giant Legos at COSI

Will playing 'nice' with Smoky:)

Will and Grandma with his new scarf!

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:)