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!

Three Little Leprechauns

Our session with Help Me Grow went well. Will received lots of praise for how well he is doing in many areas and we got some good ideas on new activities to work on. The physical and occupational therapists were concerned about him still favoring his right side so they gave us suggestions on how to get him to grab for toys and look towards objects on his left. They also gave us ideas for working on his head control other than just tummy time. This was helpful because William does not always love his time on his tummy. The speech therapist was pleased with his mouth posture and his babbling and gave us some resources to help get us stared on sign language. Mostly it was a good day and Will loved being fussed over by all these women!

The disappointing news with Help Me Grow was that we will have to wait at least 60 days to get another therapy session at the clinic because we are actually on a waiting list for regular home services. They told us that we may have home services start for Will by this summer but until then we are looking into private services. The major down side to the private services is, of course, the cost, and also that there is a waiting list for these as well. We hope to get started with at least physical and speech therapy through Children's Hospital or Easter Seals, whichever can get us in faster.

Will's well baby check was great as well. He is up to 12 lbs 12 oz and 24 in and doing very well. He got more immunizations and a thorough check up. He started a small amount of oatmeal cereal this weekend and likes it so far. We may see if he likes peas next!

His vision screen went well too. The appointment itself took about 10 minutes but we were there for over 2 hours, so it was a lot of waiting on Will's part. They mostly checked to see if he followed objects and lights and then they dialated his eyes and looked at them under the lenses. He was a trooper through it all and slept it all off on the way to Fort Wayne that afternoon.

We attended our second DSACO New Parents meeting yesterday and we were enlightened to many interesting things about different doctors and thearapies and clinics. Going to the meeting was both good and bad for me...it was helpful becasue it made me realize that we can not become complacent with the care and services Will is receiving, even if it means fighting to get the care he needs, but it also made me freak out a bit about some things that may or may not be cause for freak out. The hardest part is that we are learning as we go, and no one can or will tell us what we need to do, so we have to make these decisions based on what we THINK is best for Will. We did meet a lot of really nice people at the meeting that will be great resources and support for us because they are travelling down the same road:)

Will has been entertaining Ron and I with all these fun, new things he is doing. Just in the last couple weeks he has rolled over from his belly to back several times, started grabbing the bottle with both hands, grabs for his feet and holds on for awhile, rediscovered his little thumb and is chomping away at it and has started showing a lot of interest in some of his toys. He is also doing very well with his new bottles and really likes the baby cereal!

These pictures are from St. Patrick's Day and Will's cousins, Ava and Jonas, are 'helping' Will see himself in the mirror! They love to 'help' with Baby Will:) Happy 4 Month birthday Baby Will!

Mama Bear

We have connected with so many wonderful people near and far, new and old via the internet. Yesterday I was reminded that there are also a lot of evil people out there that use the internet to harm others. As I was happily starting my Saturday morning I stumbled upon an email from a group of parent-advocates that told of a very horrible group of people that are stealing images of individuals with Down Syndrome and creating captions for them that are very cruel and insensitive. This was not a good day for me:( I am somewhat nieve and it is hard for me to believe that there are really people out there that would think this is funny and not see how hurtful it can be to those who love these individuals.

Many times I still wonder, why was I chosen for this job. I am not sure I can be the fighter that Will deserves. I am just not a fighter, I never have been. I have always seen myself as the peacemaker. My mom says that this will bring the 'Mama Bear' out in me but I am just not so sure.

As a group we were advised to take down all our pictures on our blogs and to consider requiring people to sign in to access our page. I am just not going to do this. I was reminded by Ron that there are always going to be horrible people out there and we can't do much to change that (I really hate it when he is right when I am trying to freak out about something!), and we will just have to protect Will the best we can from insensitive, mean people. Will and his adorable, smiling face knows no different. Which is comforting, at least for now:)

Otherwise Will is doing great. He has starting grabbing for his toes and is looking like he wants to roll over. This week he has his big meeting with the Help Me Grow therapists, his vision screen and his 4-month well-baby check. So it will be an exciting week and hopefully a good one filled with good news. We have had a rough couple of weeks. Will was sick and on breathing treatments, Ron got carbon monoxide poisoning, our family dog Ellie died, the Deacon that baptized Will passed away, Uncle Ricky had surgery on his leg...so we really need some good news around here. Thankfully, Will, Ron and Ricky are all recovered and doing great!

One last thing...I hope everyone likes the new blog layout and has seen that I have posted some buttons on the one side that I hope you will check out. First, we are on the list for the Traveling Afghan and you will have to go to the website to read more about it. It is such a neat project! Second we missed the official day for the Spread the Word campaign, but please go to the site and pledge to help end the R-word. Third, all of you that are local and interested, there is a 5K run/walk on May 1 in Columbus to support Down Syndrome awareness. We will be walking/running and would love to have company:) There is another one in the fall that is nationwide so if you miss this one maybe we will catch you in September. Last, I have been following a blog written by a Mom that had a little girl in January with DS. She is an amazing writer and it has become so popular that CNN is doing a piece on her on Tuesday at 4:00 PM. If you haven't heard of her, she wrote an emotional, truthful and beautiful story of her daughter's birth. She too received the diagnosis at birth and in so many ways puts into words EXACTLY how I felt when Will was born but either couldn't express or was afraid to. Her blog is http://www.enjoyingthesmallthings.blogspot.com/ .

Life and Coffee

Have you ever been sitting in church listening to the homily...and think to yourself...'is he talking directly to me?' ? That happened to me at church this weekend.

We had a visiting priest that gave a great analogy of life to coffee. He said our lives are like coffee. If we just take whole coffee beans and pour water over them, on the other side we just get brown-colored water that tastes gross. But if we grind up the beans and then pour water over them, we get a wonderful version of water on the other side called COFFEE!

We too need to be ground up sometimes. We have to be ground by the stuff of life and carry our crosses and on the other side is a better version of ourself. On the other side of our crosses is salvation. On the other side of being ground up by life we find God:)

I guess what I thought this meant for me is that Will is going to help me be a better version of myself. He is going to help me come closer to God. He is going to teach me more about love, compassion, understanding and patience than I would ever have learned if I hung out all day in Italy with brown-colored water taking it easy.

He will make us ALL a better version of us:) Thanks Will!

DS Research

Gaga and Papa Brough and Ron and I went to a very interesting talk at OSU last night about research to improve learning, memory and speech in individuals with Down Syndrome. The foundation has a website if you are interested in reading more... http://www.dsrtf.org/.

Some of what we took away is that there are many similarities in the treatment and research of people with Alzheimer's and those with DS, that there are lots of very promising drugs in the works to improve cognitive function for DS individuals but that they are still in trial, and that DS research is drastically under-funded.

It was a very interesting evening. Thanks Aunt Mere for watching Will so we could go:)

This picture is of Will and Ron at Jonas' birthday party this weekend...I'm not sure who is more unhappy about the hats Gaga and Ava made...Will or Ron!?! Happy 2nd Birthday Jonas Edward!

I'm Down With You

This is such a neat project...I can't wait to order the book and see the documentary!
http://www.imdownwithyou.com/

Pictures

This is my last post for today...when it rains it pours! I posted new pictures on our Bartosch Shutterfly page including some of Will's baptism. Enjoy!

Good Article

This is a very good article that was sent to me by Will's Great Aunt Sandy. Well written and very insightful!
The word that really hurt me The News-Sentinel - Fort Wayne IN

Adversity

This is a sad story about the US snowboarder Kevin Pearce that was supposed to be in the Olympics but had a bad injury that left him in a coma. He has a brother with DS that is a Special Olympian in snow skiing.
Check out this great MSN Video: Injury, adversity don't stop snowboarder

Smiley Boy :)

Will is getting so big! He is up to 11 lbs and 23 in. Will is smiling and cooing and sucking his little thumb. He is a very vocal boy and loves to just lay in his bed in the morning and cackle and coo away. It is wonderful to wake up to that sound! He has started reaching for toys when Daddy plays with him and is holding up his head very well. He loves it when Mommy dances him around the room and sings to him...although no one else would enjoy my singing! He smiles so big when I sing to him that you can barely see his eyes! His whole body smiles:) He loves when his cousins, Ava and Jonas, talk to him and kiss him. He just lights up when they play with him!

Since I wrote last ( I know it has been a long time...sorry!) we have had a few appointments to report. He had his follow up hearing screening, since he didn't pass on his left ear in NICU. This time he passed with flying colors on both ears! Thank the Lord! We went to the Children's Hospital Audiology Department to have them do a thourough check of his hearing and all 4 tests showed that he is hearing with both ears. He was a very good boy through the whole thing and all the ladies in the office went nuts for sweet William. We are so happy and relieved:)

We also had his 2 month appointment with our favorite doc, Dr. Parsons! She is so sweet and compasionate and said that "Mr. Will is doing awesome!". She said all of his stats were good and thought he was doing well holding up his head. She noted that he definately has low muscle tone, but reminded me that this is to be expected. Will got 2 shots and 1 oral vaccine. He was very grouchy at us that night but was back to his smiley self by morning!

We are still talking to Help Me Grow and hoping to get some services started soon. Our coordinator said that although he tested well, based on his medical diagnosis of DS, he should qualify for services through the program. So we are patiently waiting to be contacted to meet with the therapists to get started.

Will was also baptised a couple of weeks ago. We had a very nice ceremony after church and everybody that loves Will was there. His Great Grandma Brough even made the trip all the way from Fort Wayne! Will is so lucky to have Uncle Ricky as his Godfather and both of his Aunts as his Godmothers. Since Will is going to need all the support he can get we saw no other way than to have both Aunt Amelia and Aunt Meredith as his Godmothers! He is such a lucky boy to have so many people that love him. We know he has lots of people loving him and praying for him that weren't there as well. Trust me we know you are praying for us because we don't know how we would be doing so well otherwise.

Please keep up all the prayers for us. Although we are doing well we do still have our rough days. Sometimes it is still so hard to believe that Will has Down Syndrome because he is doing so well with all the 'normal' baby stuff. I know eventually he will fall behind and this will be very hard for me as a mother. Every once in awhile, when I least expect it, I get a bit sad thinking about the future. For now though we are doing well and staying positive. We absolutely adore Will and just love him to pieces!

(In this picture Will has foot rattles on his feet and bear-bells on his wrists. The foot rattles were recommended and are a baby toy...but the bear-bells are from Ron's wilderness runs to scare away bears. As you can see Will thought it was as funny as we did!)

Will is 2 Months Old

We can't believe it has been 2 months since Will came into our lives! We have been busy!

Will is doing very well. He is smiling and cooing and holding his head up more and more. He is up to 10 lbs and grew 1 whole inch since birth:) He is eating and sleeping well (thank goodness)!

He had an appointment with a Geneticist last week. This meeting was to confirm his diagnosis and tell us which type of Down Syndrome he has and to talk about the risks for possible siblings for Will. Will has the common type of DS, Non-Disjunction Trisomy 21, and this type is not genetic. This basically means that somewhere along the way some of Will's cells did not divide correctly and so he received an extra copy of the 21st chromosome. Although doctors don't know exactly why it happens they do know that it is spontaneous and unpreventable. Which is both comforting and scary! It is amazing to me that there are so many babies born with the correct number of chromosomes:)

We met with Help Me Grow again this week and although they said he tested well they do want to get him started with some therapies. We will meet next month with a Developmental, Physical, Occupational and Speech Therapists. We have been so blessed to have had some wonderful friends that are therapists reach out to us and get us started with some excercises and activities. So Will gets daily workouts and seems not to mind too much. Thanks Holly and Sarah!

I am ashamed to admit that until 2 months ago, like many others, I had only a passing knowledge of what it means to have Down Syndrome. So I am going to share some of the facts I have learned along the way.

Down Syndrome is the most common chromosomal anomaly and occurs 1 in every 733 births, there are approximately 5000 babies born with DS every year and it affects about 350000 people in the US.

80% of babies born with DS are born to women UNDER the age of 35...though your chances of having a baby with DS increase AFTER the age of 35.

Common features of people with DS are the flat facial features, larger than normal space between their first two toes, curved pinky fingers due to a missing joint and a single, deep crease across the palm of their hand.

Individuals with DS have widely varying degrees of functioning and most children attend mainstream schools, participate in typical extracurricular activities and have the full range of feelings and emotions. Many adults with DS attend college, have jobs and live independently.

DS is named for a man that published the first accurate description of the syndrome. His name was John Langdon Down.

To learn more about DS visit http://www.ndsccenter.org/, http://www.ndss.org/ or http://www.dsaco.net/ . To read heart-warming and inspiring stories written by mother's of babies with DS read 'Gifts' by Kathryn Soper. It is a wonderful book. It changed my whole perspective!

Help Me Grow Assessment

Will had his first evaluation with the Help Me Grow Program and it went very well! We were visited by an Occupational Therapist and a Speech Therapist. They were very impressed by how long he could hold up his noggin and also that he turned it both ways. They said he had a really good hold on their fingers and toy rings and were happy at how he responded to lights, sounds and Mommy's voice. He even turned his head around to look when Daddy came in the room. I think maybe he was showing off!
For now he does not need any intervention and therapy but we will continue to work with him on our own doing lots of tummy time and finding many other excercises and activities to stimulate him. He will be reassessed at 6 months to see if he needs therapy at that point but for now it seems he is in line with his peers and doing very well:)

Will's First Christmas

Merry Christmas and Happy New Year!
Will had a wonderful first Christmas. We travelled to Cleveland, Wooster and Fort Wayne to spend Christmas with our families and then spent the New Year at home. We had a great time visiting family and friends and introducing Will to everyone. Will got many nice gifts and loved being held and cuddled by all!