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!

Will's Sweet Tooth

Our friend that is also a Pediatric Physical Therapist gave us a tip that I should try letting Will dip food in things to get him interested. She suggested ketchup or salsa but knowing my little guy and the sweet tooth he has already developed, we tried maple syrup. It worked! He brought it straight to his mouth and has been doing it ever since. As you can see in the picture he is practically choking himself with the cracker to get the syrup off. Great suggestion! Thanks Holly:)

Elmo

In this video Will is playing with one of his pal's Elmo toy. At first he just stared at Elmo and then he looked at me like, 'what is this thing?'! After a few moments he got curious and started grabbing Elmo to find out more. Take note of how he startles when Elmo laughs...it is funny:)

Will and Addison

I also have to post this picture of Will with his girlfriend, Addison. Isn't Addison just the sweetest:) Her and Will played together at playgroup and had fun flirting.

All girlfriend jokes aside we had our Buddy Walk Kickoff event this past week and the keynote speaker was a young adult women with Down syndrome named Jennifer Cunningham. She is amazing! She has won all kinds of awards and honors for her involvement on the national level in DS organizations, she speaks at different events, she works, she lives idependently in her own condo, she drives, she was on her high school gymnastics team and she is engaged. Yes, she is engaged! She is so inspiring and gives all parents of individuals with DS so much hope for what our children can and will be. So although I am joking when I say Addison is his girlfriend...you never know:)

To read more about Jennifer Cunningham and other amazing self-advocates go to: http://www.ndsccenter.org/selfadvo/council.php

Also, more to come about the Buddy Walk soon...but mark your calendars...the Columbus Buddy Walk is Sunday, October 3!

Busy Boy!

Will has been a very busy boy and we have a lot to update everyone on! Since I last blogged, Will has been sitting up independently and rolling himself all around the room. He has been to several appointments and a couple of fun parties. Will's calendar is probably busier than most adults:)

Starting with last week, we had another Occupational Therapy session, our regular Physical Therapy session and a follow up appointment at the Audiology Clinic at Children's. The OT started out well but Will fell asleep in the therapist's arms by the end of the session. We mostly worked on different oral exercises to improve mouth posture and prevent tongue protusion, grasping Cheerios, holding a sippy cup and just general sitting in the highchair. All things parents of typical babes take for granted...we have to work extra hard on to achieve. He is really not all that interested in grabbing Cheerios or other small objects or in drinking from anything but the bottle so we have a lot of work ahead of us. I think we need to go see a Feeding Occupational Therapist if we don't make some strides soon, but we will see what Dr. Parsons thinks at Will's 9 month checkup this month. Will's PT went well and he is doing much better with sitting up and rotating to grab toys and with putting more and more weight on his arms. She gave us more new exercises to work on to get Will to play at his sides while sitting up and new ones to get more weight bearing through his arms. His audiology appointment was not as positive. He again has some hearing loss on his left side which can be anything from ear wax to fluid to damage to the eardrum. We will know more after we see the pediatric ENT in September.

Last weekend Will also had a playgroup with his pals that we have meet through our support group. We had so much fun sharing toys and talking about what all of the kiddies are doing developmentally and in each of their therapies. We are lucky to have met these wonderful friends that we have something so unique in common with:) Saturday night we had a party at Aunt Amelia's and it was fun to see good friends and family and share Will with them!

The Gang

This is the gang that I watch and explains why I am crazy:)

(Tyler 1, Ava 3, Will 8Months and Jonas 2)

Playing in the Sandbox

Will loves the sandbox at Aunt Mere's house! Today he sat up for a long time and just played in it with the 'big kids'. Some went in his eyes and some went in his mouth but mostly he just loved the feeling of it between his fingers and toes:)

Will is 8 Months Old

Will is going to be 8 months old on Sunday and since it has been awhile since I updated on the new and exciting things Mr. Will is doing, here we go. His Physical Therapy has been going really well. Will's PT spends an hour with him every Friday and then gives us things to work on throughout the week. Several weeks ago he mastered rolling over both ways and does that regularly. He is still not quite sitting up alone...but he is sooo close! He will sit independently but still forgets that if he leans back too far he will tumble:) He is playing well with harder-to-pick up objects like spoons and sippy cups and has been using his hands to pass things back and forth really well lately. He is also very close to being able to pick up a yogurt snack (likes these better than cheerios so far!). He is babbling even more lately. He is saying 'baba' and 'dada' although there is no true connection yet:) On the occasion he lets out a 'mama' too!

I have been told that usually around 6-8 months old is when you really have your 'ah-ha' moment. Thus far developmentally there has been very little difference between what Will is doing and what a typical child his age is doing. Around 6 months a typical child will take off and conquer many milestones very quickly. As we have been warned and been prepping ourselves for, Will's development will come, it will just be much slower. Since many of our friends are turning one and on the move, I have been trying to find the silver lining to all of this and this is what I have come up with so far...I will have more time to cuddle Will before he wants to always be put down...I have a few more months to get my house baby-proofed...I don't have to worry that Will is going to pick up stray crumbs and put them in his mouth yet...and I can still get pretty good pictures of him since he is not completely mobile yet!

We are practicing with the spoon and sipply cup in this picture. Will is such a big boy!

Loving Littles

Yet again Kelle Hampton put into amazing words what I am feeling and I didn't even know it. You must read her post from Tuesday 7.6...it is so good. She is so true and honest and so right when she says sometimes it just hits her that her daughter has Down Syndrome and that she doesn't always know when it is going to hit. That is the worst of it. If you knew, you could prepare yourself or at least make sure you are somewhere that you can cry freely, but when it hits you in JoAnn fabric for example...as it did hit me last night (Mere you know why!)...it sucks because you just have to brush it off and wait until you get home to let your gaurd down.

I know she is right that moments like this hit 'in non-special needs land' too...'Parenthood is hard and beautiful. Scary and rewarding. Sad and happy.'...or so I am learning. It truely is ALL of those things. She put it best when she said 'Loving littles is one of the greatest, most wonderful things that will ever happen to you.'! So I will end on that happy note:)

(Kelle Hampton's blog is linked to Will's blog...it is called 'Enjoying the Small Things'.)

4th of July at the Lake

Will had an exciting first 4th of July. Although he slept right through all the fireworks, many of which were exploding right outside the window of the cottage where he was sleeping, he did really enjoy splashing and playing in the lake all weekend. He loved kicking his feet and splashing his hands in the water, which was really theraputic and really cute. It is really hard for me to not see every moment as an opportunity for therapy, but this type of therapy he did not seem to mind and it let me off the hook for the weekend:) He did have some fussy moments since he came down with a bout of Thrush and had to take an antifungal medicine all weekend, but he was a happy guy most of the time. Thrush is an infection in the mouth that infants and older adults get that causes uncomfortable white patches on the tongue and cheeks. I am told it is very common and I am happy that it is already clearing up. He is a little reluctant to eat, although he is always reluctant to eat his veggies, and is holding his tougue out more because I think it feels funny, but most of the patches are gone and he is eating his bottle much better today.

Here Will is lounging in his baby float trying to stay cool:)

Do I Have Something on My Face?

Will discovered grass for the first time this weekend as well. He was grabbing and pulling it and managed to get a lot in his mouth. This may, or may not be why he has Thrush. (That is a joke, you don't get Thrush that way!) It was pretty funny!

Picnic at the Park

Today Will had a picnic in the park with Ava and Jonas and our friends Emily and Charlie. We had a good time eating and making a mess and playing at the park afterward. We found out that our friends are moving to Michigan in a couple weeks. Although we are sad that our picnics with Charlie will come to an end...we are happy for them and their new adventure and wish them all the best!

Three Little Monkeys

Although Will doesn't have any siblings yet...his cousins are pretty much his brother and sister. They just love him and fight over who gets to be closer to 'Baby Will'. He thinks they are pretty neat too and during the few moments when Will is inconsolable, Ava and Jonas are always able to make him smile:) Finally, I got a picture where they are all looking at the camera...it was very much like getting three monkeys to sit still!

Thanks Grandma!

Grandma took me shopping and got me sunglasses!

Father's Day

We spent Ron's first Father's Day weekend in Cleveland and Wooster. On Saturday we headed to the Cleveland Zoo with Grandpa Ron and Grandma Susan and had a lot of fun. It was a bit hot and Grandpa and Will got a little tired toward the end, but we saw lots of cool animals and had fun walking around. On Saturday night we had dinner with Grandma Sandy, Grandpa Jim, Aunt Maggie, Aunt Kelly and Uncle Steve. Will had fun playing with everyone and showing them all how well he can roll over and sit up (with a little bit of help from mommy!). Will never has to look too far to find someone that loves him:)

Bouncin' Around

Although our PT doesn't want us to encourage it...Will loves to stand up! He thinks he is sooo big:) And it is sooo cute! He is really starting to enjoy some of the many toys we have aquired. He especially likes to stand in his jumper and play with the toys...and mommy loves it because it gives me 15 minutes to get something done!

Down Syndrome Clinic

Will went to the Down Syndrome Clinic at Children's Hospital this week. We met with Dr. Nash, a physician that specializes in developmental disabilities and sees patients with DS in the clinic once a week. It was a good chance to have another doctor examine Will and evaluate him and also have him seen by an Occupational Therapist, which is the only therapy discipline that we have not met with yet. We had received alot of negative feedback from other families in our support group about the clinic but wanted to check it out for ourselves. We like Dr. Nash. She was very sensitive and compasionate and did a very thorough exam of Will and a thorough interview with us. She was very happy with his development so far. The Occupational Therapist did an evaluation as well. She assessed him on how well he could grab and hold objects and rated him on which types of objects he held and for how long. She was also happy with his development so far and thought he would benefit from visiting with her once a month so that we could get her feedback on what types of activities we should be working on at home. So she generously offered to fit Will into her schedule so that we could avoid the dreaded run-around with the Children's Hospital Therapy waiting list:( We like her already!!!

We do see how the clinic needs some work. We were told 3 different appointment times and informed that we should arrive 15 minutes early, only to get there and find a dark office and no one there yet. Then, once we watched the staff walk in and finally got into the exam room, we waited and waited and waited some more. We were there for over 3 hours! Poor Will missed his nap, his breakfast and went through all the daipers in the diaper bag:( So we had to beg the nurse for one! We appreciate that there is such a clinic right here in Columbus that it will be a good resource for us and Will, but can see that it is under-staffed, under-funded and under-organized. We will continue to visit with Dr. Nash at this clinic on a yearly basis and hope it gains some speed, but we are also hoping to check out the Cincinatti Down Syndrome Clinic.

We finished off the day in the heat and sunshine at the Columbus Zoo. It was hot but a lot of fun:)

First Trip to Adams Lake

Will made his first trip to Adams Lake this past weekend. My family has a little cottage on this lake and we have spent weekends and vacations there for almost 30 years. It was fun to bring Will there for his first lake experience. He loved the water and although it was a bit cold and shocking at first, he was kicking his feet and loving it by the end of the day. Which is good therapy and also very entertaining!

Will's 6 Month Pictures

Therapy

Will has finally, officially started Physical Therapy! Yipee! We had our first session two Fridays ago and a second one yesterday. It has been fun so far. We really love the Physical Therapist that is working with Will. She finds fun ways for us to play in constructive ways. I have been telling people unfamiliar with baby PT that all we really do is learn ways to play constructively. We do 'sit ups', and 'push ups' and we roll around on the exercise ball. She shows me new things to do with Tummy Time and Will pukes all over her boppy pillow :( He has already improved his sit ups and roll overs and was sitting up independently for a couple of seconds yesterday! We will go to PT every Friday for now, since we have the coverage at the moment, and continue to wait for the home-based Help Me Grow services.
Will was evaluated by a Speech Therapist recently as well. She thought his mouth posture was good and was happy with all the verbalizations he is making. She gave me good advice on how to properly feed him with the spoon and gave me some recomendations for encouraging new sounds and expressions. She also made some recommendations on Infant Sign Language books and CDs and showed me some exercises to do with his mouth and facial muscles...which he already can work quite well since he is very expressive with his little face. Will has the biggest, brightest smile but also the saddest, most pathetic pouting lip you have every seen :) :(

This past weekend we had a family wedding in Fort Wayne so we got to see many of our family and friends that live in Indiana and we celebrated Will's Great Grandma's 90th Birthday with a big party. We love Grandma Brough and hope our lives are half as full as her's has been!

(In this picture Great Grandma Brough is holding Will and Great Grandma's OLDER sister, which is Will's Great, Great Aunt Mary, is in the middle and Papa Brough is on the end.)

Happy Camper

Will had a busy weekend! It started on Friday with his 6 month well check. Dr. Parsons was happy with Will's progress and kindly answered all my silly new-mom questions. He is 16 pounds and 26 inches. He got his immunizations and had a thyroid screen that came back normal.
Saturday morning Will had his monthly playgroup with some of the kids and families that we have met through our support group. It is great to get together and compare notes on what they are all doing in therapy and how they are all moving along. Will is the 'baby' of the group so he mostly observes but hopes to join in the fun someday soon!

Saturday afternoon we went to the Down Syndrome Association of Central Ohio's day at the Zoo. It was neat to be there after it closed for the day and have the place all to ourselves! We got to see the new polar bear exhibit with out anyone else around and watched the brown bears wrestle with each other up close and personal. Will might not have enjoyed it nearly as much as Ron and I did:)

Saturday night Will went on his first camping trip. We joined the Brown's on their camping adventure just north of Columbus. I expected to be in the car driving home half way through the night because he wouldn't sleep...but he did very well. He ate his green beans and applesauce by the campfire, drank his bottle while we roasted marshmallows and slept all night in his baby travel bed despite all the noise the bullfrogs were making. I think Will likes the outdoors:)

On Sunday we went to church and had breakfast with Grandma Sandy and Aunt Amelia and then took a long walk in the evening. It was a very busy, very fun weekend. Will, mommy and daddy were pooped by Sunday night:)

My niece Ava is a bumble bee in her Bitty Bug Ball. The quality is pretty bad...but you get the idea! (Facebook wouldn't upload this video so I posted it here for all her 'fans'!)

My First Mother's Day and Will's First Indians Game

For Mother's Day we took Will to his first Indians game in Cleveland. It was a bit brisk on the lake but we had fun sitting in the sun, all bundled up, watching the Indians beat the Tigers. It was a great way to spend my first true Mother's Day...holding the baby boy all snuggled under a blanket and sitting next to the other one! It was a good day.

I got the best Mother's Day present too! Ron, I mean Will, got me a Down Syndrome necklace charm. In the picture you can see that the three vertical lines represent the 3 copies of the 21st chromosome and the 47 dots around it represent the total number of chromosomes Mr. Will was given that make him so special. On the back are his initials and his birth date. I love it! Thanks Will, and Ron:)

Will and the Girls

I have some cute pictures of Will and his little girlfriends. He got to flirt this weekend with the Miller girls and even had a sleepover with Miss Jillian! This first picture is of Will and the girls at the Buddy Up walk. Morgan is on the left and Jillian is on the right. He is so lucky to have two beautiful girls to ride with! The next picture he is in his jammies with Jillian. He had enough flirting for one night so he is pushing her away...haha!

Also Will absolutely loves his cousins. He especially lights up for Ava. I think the feeling is mutual. He is her real-live baby doll and he loves all the hugs, kisses and goos he gets from her. He recently started to grab her hair. In the last picture you can tell how much he enjoys it! I can't wait until he discovers mine!

Buddy Up 5K

We had so much fun at the Buddy Up 5K! Will had all his biggest fans there to walk along side him through Franklin Park. It was a wonderful evening with music and bubbles and we met a lot of great new people. Will and his little smiling face may not have known how important it was to be a part of this event and to have so many people there to walk beside us...but mommy did. It made my heart smile:)

Pictures and Buddy Up

I posted more pictures on the Shutterfly page of the last couple months with Will and also of Ron's race and our visit to Louisville. Also wanted to remind everyone that this Saturday in Columbus there is the Buddy Up 5K Run/Walk at the Franklin Park Conservatory. It benefits the Down Syndrome Association of Central Ohio which does great things. There is a kids run and other fun kid stuff too. We will be there with many family and friends so if you can, come and get some excercise and Walk for Will!!! (or all the other wonderful people that this organization serves!)

Tulips

I love tulips. I have always loved tulips. Every year on Valentine's day I tell Ron not to bother with over-priced roses...all I really want is white tulips. I even loved tulips when I had to dig up over 20000 bulbs every spring at the park I worked at in Fort Wayne. I love how simple and complicated they are. I love that they are planted as a plain, boring bulb that you don't really expect much from. I love that it is hard to envision what they will look like come spring but that you do it anyway. I love that you have to have a little faith that in the future they will be beautiful:) More so than any other plant, if you are just patient and wait they are even more beautiful than you imagined.
This year tulips have a special meaning to me. I will always look at tulips in a different way because they now remind me of Holland. And of Will. And this makes me happy:)

Run Daddy Run!

We had a wonderful trip to Louisville, KY this weekend. Ron ran the Derby Marathon and Gaga, Papa, Uncle Ricky, Great Grandma Brough and Aunt Amelia and Tom were there as well to run, walk and just hang out. Will met his great, great Aunt Mary and Uncle Paul and cousins Jim, Gene and Tina too. We went to Churchhill Downs and Jim Beam. We didn't make it to the Louisville Slugger museum or get to explore much downtown because it rained most of the weekend. We hope to go back sometime soon to see more of the city because it was a really fun place to visit!

Will's First Easter

We had a wonderful Easter. We celebrated Easter for two weekends...Easter weekend #1 we spent in Cleveland and Wooster visiting Grandma's and Grandpa's and Aunts and Uncles, and our friends the Miller's. Will had fun hanging out with everyone and got some good flirting in with Miss Jillian.
On Easter weekend #2, we stayed in Columbus and Gaga and Papa Brough and Uncle Ricky came to celebrate with us. We also met our new friends the Arbona's, and Will exercised with his new buddy Sam. We had lots of fun and learned a lot.
Will got tons of good things from the Easter bunny including candy that Mommy and Daddy are enjoying!
Several weeks back Will and I also went on a blind date with Liz and sweet little Addison. It was great. Will and Addison slept most of the time but the Mommies got lots of good note-sharing done!
It is so nice to play with old friends and forget about DS for awhile and also to meet all these new friends that we have a unique bond with. We love all our friends old and new:)
I am usually good with remembering to take pictures...but I forgot to take pictures of Will with all his new friends. As cousin Ava would say...next time!

Eat It Up!

Will is doing lots of fun and new things. He is eating baby food and baby cereal. He really seems to like the stronger flavors. So far carrots and prunes seem to be his favorites. He is bringing toys to his mouth. He is grabbing his feet and has ALMOST managed to get a toe in his mouth. He is a crazy babbler...especially when he has a mouth full of carrots or prunes since those stain the worst! He is really starting to react to familiar voices even when they are far away. Best of all he continues to smile with his whole body. We just eat every little bit of it up:)
All these little accomplishments pass most babies by without much celebration. At the Bartosch house we get really excited about small things. We know that these little things are HUGE. It makes me sad that I can't just assume that he will do all the normal stuff when he is supposed to, but it also makes me grateful that no accomplishment, big or small, will ever go undetected or uncelebrated in our lives!