Happy Easter

We had a great Easter! 

Will and his cousins Ava and Jonas

Grandma and Grandpa with the 3 grandkids...very soon to be 4!  Baby Girl Brown will be here in just a couple weeks:)

I also wanted to share an email forward I had sent to me by Will's grandma.  It is a cute little tale of how God chooses moms of children with special needs.  It made me feel proud to think of it this way so I thought I would share it:)  Happy Easter!

Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for
propagation with great care and deliberation. As he observes, he instructs
his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew."
"Forrest, Marjorie; daughter; patron saint, Cecelia."
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to
profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped
child."
The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God.

"Could I give a handicapped child to a mother who does not know
laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wears off, she'll
handle it."

"I watched her today. She has that feeling of self and independance.
She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough
selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally,
she'll never survive. Yes, there is a woman I will bless with a child less than
perfect. She doesn't realize it yet, but she is to be envied. She will
never take for granted a `spoken word.' She will never consider a `step' ordinary.
When her child says `Momma' for the first time, she will be present at a
miracle and know it! When she describes a tree or a sunset to her blind child, she
will see it as few people ever see my creations."
"I will permit her to see clearly the things I see---ignorance, cruelty,
prejudice--- and allow her to rise above them. She will never be alone. I
will be at her side every minute of every day of her life because she is doing
my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
 God smiles.  "A mirror will suffice."

Spring!

So glad spring is here!  We enjoyed some time at the park this weekend and even sat down in the grass:)

Oh this tickles...

Maybe I'll touch it...

Oh look my shadow!

Will has been enjoying the swings at the park and a few chilly walks as well.  He is standing and cruising more each day.  He had Orthodic inserts put into his shoes last week so we will see if those help.  Most kiddos with Ds end up with some sort of Orthodic support.  The ones his PT wanted to try are the least invasive since they are just basically over-the-counter inserts for babies.  The hope is that it will just give him a little more support when he is standing and begins to walk.  His PT also put him on the treadmill last week!  It was really cute and funny:)  He looked like a little drunk sailor, but did a decent job keeping up with the treadmill.  He complained the entire time, but kept walking...similar to what I do on the treadmill!

Here he is jamming with his play table!  The PT still wants him to have some time without shoes to get input there as well.  He loves to stand and play at this little table! 

I also recently attended a workshop on Oral Motor Therapy by a company called Talk Tools that was given by the Oral Motor/Ds Feeding Therapy guru, Lori Overland.  The basic idea with OM Therapy is to use specific placement of food, utensils and tools in a theraputic way to promote skills used for proper feeding (and drinking in our case!) and for speech clarity.  Since children with Ds have low muscle tone, this program has been shown to help kiddos with feeding and speech problems and improve mouth posture by strengthening the oral motor muscles.  It is a very interesting, controversial and expensive approach.  Few speech therapists are trained in the specific techniques taught by the woman that developed the program so our limited options are to buy her expensive book/DVD, find 8 other families interested in having her come to Columbus to evaluate their child and also pay the very expensive fee associated with the eval or possibly finding someone more local (there is a ST in Indy that was trained by this woman) and have them evaluate Will and give us a therapy program.  It is thrilling to know that there is someone out there that may really be able to help Will with his 'drinking problem' and also improve his mouth posture and speech along the road, but EXTREMELY frustrating to not have access to the information!  So I find myself at a loss and also on a wild goose chase:(  Anyone that knows me well, knows how much I love a good chase!  For now I have written our local Down syndrome group to see if they would be willing to buy the book/DVD and let me borrow it for awhile:)

Look at that good mouth posture...Lori Overland would be so impressed!!!  Haha:)

We Love Pampers

The newest Pampers ad campaign features a sweet little baby girl with Ds and celebrates babies with special needs.  They join Target, Walmart and Toys R Us as companies that have featured beautiful children in all shapes and sizes in their ads.  Although I typically buy Target diapers...this makes me want to buy Pampers diapers too:)  Kudos to Pampers!  Check it out...
http://media.us.pampers.com/en_US/emails/POME_Miracles/email.html

World Down Syndrome Day Video

In honor of World Down syndrome day the IDSC for Life made this beautiful video.  This organization promotes respect and dignity of ALL life at ALL stages.  They seek to raise awareness of the extremely high number of babies with Down syndrome that are aborted each and everyday, nearly 90% of prenatal diagnosis', because of pressure and misinformation about the Down syndrome diagnosis.  This organization is dear to my heart from a pro-life stand point as well as an advocacy stand point.  Learn more at http://www.idscforlife.org/ .

Busy Boy

Will is getting so big!  This video makes me laugh:)

Sorry, that we have been away for awhile...life has been crazy!  I started a new job and it has been hard getting adjusted to the new schedule.  Will is doing really well though and moving along with all of his therapies.  He is doing lots of fun new things. 

He is standing himself up on the stairs and couch and on his little play table.  He has mastered getting up the first step but has not yet figured out how to get down:(  He has had lots of bumps on the head the last couple weeks as a result!  He is bear-crawling a lot more and has started standing upright in the middle of the floor, then hovering there for several seconds, then plopping down on his bottom.  He definately likes the feeling of standing up! 

We are still struggling with cup and straw drinking but are trying many new methods.  We started working with a feeding OT in the middle of February and she has been helping us think of new ways to get Will to like his cup better:)  So far we have not really done much more than sipping but at least we have some new things to try.  Will has been enjoying some face massage, working with a chew tube covered in Nutella to strengthen his jaw muscles, playing with his cups in the the bath so that we can learn to 'love' them more and drinking both thinned down applesauce and thickened chocolate milk.  We are continuing our bi-weekly visits to the PT and she is working on standing while playing, cruising and crawling up stairs.  We have been seeing a lot of our new home therapists too.  We have at least one session a week with either the PT, OT, ST or EI teacher.  They are all great and have been giving me good ideas for new activities to do around the house.  Working with items at our house helps us to make therapy a part of our daily routine rather than having to set aside time to work on specific things.  The speech therapist has given me lots of silly activities to do with Will to encourage new sounds.  He still has not said momma...but he has started saying 'up'.  We seem to be stuck on 'baba', 'dada', 'ahh' and the occasional 'p'!  We work on signs often as well, but the only sign we occasionally see is 'more'.  'Up' and 'more' gets Will most of what he wants at this stage:)

Will also recently attended his first OSU/IU basketball game!  The Mattas invited us to a game and we had a lot of fun.  Will was a little frightened by all the flashing lights and loud noise at first, but got used to it by the second half.  He was dancing and clapping by the end!  Although he wore his OSU sweatshirt, he was cheering for both teams!

We also celebrated World Down syndrome day on 3.21.11.  Thank you all for your support and awareness!

Bath Time Fun

Sorry I have been away.  We have been sick, busy and then sick again and busy again.  Will is so fun lately.  He is just doing a lot of funny things and keeps us laughing:)  Bath time at our house is a major event!  He is a crazy man in the tub.  It is an olympic sport or at the very least, some very good PT.  I have a great video of him splishing and splashing...but it won't load:(  For now here are some pics and I will keep trying.

We have started meeting with the Childhood League for our home based therapies and it is going well.  We have met with all the therapies...Physical Therapy, Speech Therapy, Occupational Therapy and Early Intervention Specialist and they are all great.  We have more meetings set up soon.  Will had his follow up appointment at the endocrinologist this past week.  His bloodwork showed that his TSH levels are all back to normal with the medicine.  So it is working and we will stick with the current dose and go back in 3 months.  We were happy about that.  Will is again battling thrush right now and had a little cold but has not been nearly as sick as everyone else around him.  Three of his little friends landed themselves in the PICU (Pediatric ICU) for RSV and pneumonia.  I think they are all feeling better now.  Will also has his feeding evaluation this month at Children's as well as his regular visit to the Opthomologist.  It is a busy month.  I will keep you posted on how all of this goes!

Silly Willy

More videos of Will making me laugh!
The spitting game wouldn't be so cute if it wasn't also progress.  As I have been taught by the speech therapists anything that you do that you can get Will to imitate or repeat is good for learning speech because it is the development of 'turn-taking' and that is what all speech is based on.  So we take turns spitting all over each other:)

 

Here is a little peek at Will's dancing skills!  The boy loves to groove:)

I also wanted to thank everyone again that supports DSACO and the Buddy Walk.  Tonight at our New Parent Support Meeting I was reminded of why that organization is so important to me.  Catching up with all the families that we have met this year and celebrating all of our little's accomplishments makes me feel not so alone and really pretty proud of our journey.  It is a great organization and a wonderful group of people and it feels good to be able to share our ups and downs with others that have walked the walk and get that it is a major accomplishment that Will took a sip from a cup.  They all cheered:)

There was a new couple there tonight that have not yet brought there baby with an extra special chromosome into this world.  She will be here in a couple months.  It was amazing to me that they had the courage to come to one of our meetings and it was so great for all of us to be able to congratulate and hug them and possibly make their journey a little easier to start:)

Will's Drinking Problem

Will refuses to drink out of anything but a bottle...until last night!  We did our normal dinner routine of placing the cup on his tray while we eat so that he can throw it overboard 100 times and then I can tell him 'no' 100 times.  Then at the end of dinner I always offer him a drink to which he adamantly turns his head away to tell me 'no'.  Last night after telling me 'no' several times, he decided he would give in and try it.  I proceeded to be his biggest cheerleader and it worked because he continued taking sips.  He took sips from his cup all day today and even decided he wanted to hold the cup tonight at dinner.  I guess I finally wore him down:)  I am exhausted from all the cheering.  Now who is more stubborn!

He has to keep one eye on the camera to make sure daddy is still watching!

Check out my cool new T that Grandpa Ron sent me!

Will Can Crawl!

Will started crawling on New Year's Day!  It was a happy day:)  It is a bit uncoordinated, but he gets where he needs to go.  And he works so hard while doing it!  Which makes me want to make a list of his accomplishments to date.  It is easy to get caught up in what Will can not do, and forget all that Will can do:)  So Grandma Sandy, this is us seeing the glass half full!  Also thought it might be a good reference for anyone out there with a little that has an extra special chromosome that is wondering what to expect.
Smiled 1.8.10 (1 month)
Cooed 1.13.10 (1 month)
Grasped objects 2.12.10 (2 months)
Grabed feet 3.14.10 (3 months)
Rolled from belly to back 3.18.10 (4 months)
Rolled from back to belly 4.14.10 (4 months)
Started babbling 'baba' and 'dada' 6.27.10 (7 months)
Sat up independently 8.4.10 (8 months)
Self fed Cheerios 8.9.10 (8 months)
Clapped 8.22.10 (9 months)
Waved bye-bye 9.3.10 (9 months)
Got in and out of sit 10.4.10 (10 months)
First tooth 10.11.10 (10 months)
Crawled 1.1.11 (13 months)

A video of Will crawling...

A video of Will clapping and waving...note how well he isolates his little finger and drags the Cheerio:)

You also get a taste of his best fake cough and his relationship with the cup!

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.