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!