Father's Day at the Lake

Will had a fun weekend at the lake for Father's Day.  He can't actually go in the lake because of his ear tubes, so he played in the pool filled with bottled water:)  Will can only go in treated, chlorinated water with his ear tubes unless he has custom ear molds to block out any water.  Maybe someday I will have the time to go and get the impressions done to have them made:(  For now, the pool was very entertaining!

Will is getting so close to taking a step!  He pulls himself up on EVERYTHING, lets go and leans foward like he is going to step, but then usually plops to his butt!  He is getting stronger and braver every day!  Slow and steady wins the race :)

2011 Columbus Buddy Walk!

The 2011 Columbus Buddy Walk is Sunday, September 18!  Visit Team 'Will's Way' page today to register or donate!  We appreciate all your love and support:)  http://www.columbusbuddywalk.org/

Big Boy

So now Will has decided he is going to take the whole straw drinking issue into his own hands!  He started doing this yesterday while getting impatient with me:)

Will is getting so big and as excited as I am to see him make such great progress, part of me wants him to stay a baby forever!  I know this is a typical feeling that many parents have, but part of it is also because of my fear of his future.  The older he gets the less like his peers he will be, and I just still have a hard time with that.  Right now our life is really pretty 'normal' and Will does most everything that his peers do.  I try not to let myself think too far and just continue to take one day at a time.  For now we will sit back and sip our apple juice:)
Also take note of the end of the video...he is about ready to drop it off the tray!  This is no accident, he and I argue about this often.  Mr. Will is ornery!

Therapy Fun

Heres a video of Will and Daddy doing some therapy with the ball.  Depending on Will's mood therapy can either be a little too much fun and not enough work, or miserable for everyone involved.  As you can see Will loves to bounce on the ball!

Working on the ball helps to strengthen Will's core.  It is amazing how many times I have been told that core strength will help Will with something.  Core strength is key to walking, talking, eating and most everything else!  So sometimes we play on the ball and sometimes we work on the ball but all of it is good!

What the future may hold...

Although it is sometimes difficult for me to think too far into Will's future...articles like these give me a lot of hope.  If programs like this are getting started now, just imagine what is possible:)

Going to College
Job Training

Memorial Day Fun

Will had a fun and busy weekend!  We went to the zoo, attended a few cookouts, played in the pool, had some ice cream and took a walk at the park! 

Will trying not to splash in the pool with Ava and Jonas since we can't get our ears wet until Tuesday:(

Will playing with Harper, his girlfriend from Colorado.  Will thinks Harper is pretty cute and she really likes his toys:)

Will watching the Bison with daddy at Batelle-Darby Creek Metro Park.

Hot, tired baby after a long weekend!  So starts another miserable summer without air conditioning:(  What happened to spring?

Go Indians!

Will went to his 3rd Indians game this weekend and had a great time!  He was really good and clapped along with the crowd:)  Aunt Amelia even taught him how to give a high five!

Will also got to play with his friend Jillian on Saturday!  They had a lot of fun playing with all of Jillian's toys and tried their hardest to share.  Jillian read Will a book and even tried to push him around in her little car:)

Now for a quick update.  Will had his 18 month checkup on Friday.  Aside from yet another bout of thrush, he had a good checkup.  We were glad to hear that Dr. Parsons thought his ears looked good despite his grouching at me the rest of the week and she was happy with his weight, height, heart, ect.  We have officially given up the bottle at night, which means we have to come up with another way to get milk of magnesium for the ever-present constipation:(  We have tried with a syringe that past 2 nights and Will was not digging it.  This may be because it tastes terrible or may be because by the time we get to the milk of magnesium, he has already been held down for eardrops and thrush medicine!  Will is still drinking out of the straw like a champ!  I couldn't be any happier:)  He drank an entire honeybear of watered down apple juice at the game so I know he can do thin liquids out of the straw as well.  Will also has been walking quite a bit behind his little car.  It is a little rough, but it is a good start and he has fun getting back and forth with it and  having Ron and I cheer him on:)

Tube Time

Ear tube surgery went great!  We were there and gone in just 2 hours this time and everything went smoothly.  Will was pretty grouchy and tired until about lunch but was playing and wrestling with Ava by this afternoon.  He even managed to scratch poor Miss Lillian:(  The doctor replaced the left tube but just cleaned the right one.  The only bad news is that the doc was not so keen on Will continuing his swim class so he is done with swimming for now:( 

Ear Tubes Take 2!

Will is having his ear tubes replaced tomorrow.  He was at the ENT last week and upon examination of his ears they decided that the left one is plugged so they need to go in and clean his ears and replace both tubes.  They concluded this AFTER he screamed his head off for fifteen minutes while they tried to clear them in the office:(  The good news is that his hearing was really not being affected based on his audiology screen.  Also since we have been through this before, we know it really is an easy surgery.
Will also went to the new Endocrinologist at Children's last week.  She was great.  She explained everything in a clear, concise way and answered all of my questions.  Since we were back at Children's too, everything flowed together since they already have his entire life history in their system.  I am happy we made the switch!  We got his labs back right away and all his bloodwork was in the normal range, so we are still doing well with the current dose of thyroid medicine.  So we will keep doing what we are doing and check back every couple months.
So please say a prayer for Will tomorrow.  Although I know this is a quick and minor surgery, anything that involves anesthesia and my baby makes me a little uneasy.  Will is a trooper...I am sure he will be back to knocking things off the coffee table or removing EVERYTHING from the kitchen cabinets by lunchtime!

Lillian Louise

I have a new little love...her name is Lillian Louise!

My sister had her baby yesterday.  Everyone is very excited about Lillian, but especially Ava since Will is getting a little too big to hold and is more into wrestling with Ava than cuddling with her!  It is hard to believe that Will was that small just 18 months ago.  It was a little hard for me to visit and see those familiar and dreaded hospital hallways and to realize what I didn't get to experience by having Will in NICU and all the saddness that I went through those first days. 
Will is continuing to drink out of the straw like a champ, so I posted a video as proof since I hardly believe it myself!

Drinking From a Straw...Finally!

Will drank 6 oz from a straw today!  With just a little push on the honey bear (straw cup that you can draw liquid into by squeezing it) he drank his chocolate milk like he had been doing it all his life:)  I have been using the honey bear on and off for about 6 months now with no success but I guess he was probably so sick of me trying it every couple of weeks that he thought he would just give in.  Proof positve that Will does things in his time...not because me or anyone else wants him to.  I have no idea where he gets this stubborness but I am thrilled that he decided it was time!

Cowboy Will

Will has had an eventful week!  This past weekend we spent in Nashville TN hanging out in 'Honky Tonks' and watching daddy run the Country Music Marathon.  Will really loved the live music and danced and clapped along with the tunes:)

Will also has been standing himself up in his bed!  This falls under the 'most parents hardly notice when their kid does this, but we celebrate it at our house' catagory.  Will continues to pull himself up on more things around the house and is getting braver with letting go.  We couldn't be happier when he pulls stuff down off of something because he is standing himself up to explore!

Will's Peek-A-Boo skills are also getting better:)  He is finally finding his face and almost has mastered finding his eyes!  He loves to play this game.

Will also started his swim class tonight.  He loved the pool!  He kicked and splashed and even went under water...not by choice!  I think Will is going to be a little fish:)

This is BEFORE daddy dunked me...

This is AFTER daddy dunked me...

Will also went to the ENT today.  We got some good news and some bad news.  Good news is that his Audiology test showed that while he still has mild hearing loss, it is not getting any worse.  They are still unable to tell at Will's age which ear it is and exactly what frequencies are affected but we know he hears us and the test proved that.  The bad news is that the second test that they did on him confirmed that his left ear tube is plugged and will have to be replaced:(  Replaced, as in another ear tube surgery.  So he will have surgery again in a couple days to replace the left and possibly the right ear tube.  Which I know from before is a quick and easy procedure but the timing isn't the best.  Not sure there is ever a good time:(  Although after holding him down and hearing him wail today while they tried to unplug it in the office, I will take the anesthesia anyday!  Poor guy:(
We also have lots of fun things coming up as well...second Mother's Day and Father's Day, Graduations, Weddings, friends visiting, lake season, a new baby cousin...we will keep everyone updated on all our exciting adventures!

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!