21 for 31 - Day 18

Did you know?

Before the end of the month, I'm going to post a few blogs with some facts about down syndrome.  Today, I'll copy a few of them from the NDSS website, and comment on how these effect Colin!

• Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

       This is why my blog is titled "47 Pieces To Love."  A "typical" person has 46 chromosomes - 2 of each.  Colin's 21st chromosome has 3 attached to it.  It's been difficult to explain to Natalie what a "chromosome" is!  But she understands that's it what makes up a person. 

• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

        I visit the babycenter down syndrome board on a frequent basis.  It's amazing how many 20-year old mothers there are on that board!  Many people think that it's just "older" women that have babies with DS.  NOPE!  You don't have to just be "old" - LOL!!  Just lucky!!  hehe  The first time I visited the geneticist, I was 12 weeks pregnant with Colin.  I was getting ready to have my quad screening done.  My OB sent me to see Dr. Zunich to talk to her about my chances of having another baby with a heart defect.  That was the main focus of our appointment.  I was 34 at the time - I would be 35 at delivery.  I remember the last thing we talked about at that appointment was my age.  She laughed and said my risk of having a baby with DS was not that much higher then a 31/32 year old.  I left that appointment feeling like it was all going to be ok!  Who knew that in a few short weeks we would be back in her office reviewing my amnio reports.  Yep, I was Advanced Materal Age!

• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

        I believe the percentage of babies with DS that are born with heart defects is around 50% - very high.  Once we had the Dx of down syndrome I had a fetal echo performed around 22 weeks.  Even without the Dx, I still would have had the fetal echo because of Luke and his heart defects.  Between the fetal echo, and monthly ultrasounds with the perinatologist, they were pretty comfortable that he didn't have any heart defects - or at least nothing major.  When he was a day old, they performed an echo in the hospital - ALL CLEAR!  He initially failed his hearing screening, but passed on round 2 before we left the hospital.  At 6 months old, he had another hearing screening and passed it.  He's due for his 12 month hearing screen.  He will have it checked every 6 months until he is 3 (I think!).  He has his thyroid levels monitored every 4 months.  The first time it was checked, he was 6 months old.  It showed some slightly elevated levels so we see a pediatric endocrinologist.  So far, we are just monitoring it - no medication yet.  She laughs that he is destined for thyroid problems though.  Between him having DS, and me having Hashimotos (auto-immune thyroid issue), he's leaning towards it!

31 for 21 - Day 17!

"Are you there teeth, it's me, Colin!"

Dear Teeth,

Where are you?  My mommy says that I could eat a lot easier if you would come in!  Did you know that I just turned 1?  Don't most 1-year olds have teeth?  I have heard my mom say before that it's not uncommon for children with the "magical extra chromosome" to not have teeth when they turn 1. 

If you want to come in, I am ready - I would be ok with that.  (my mommy would be too!)  It would probably help me to eat solids better.  I'm kinda getting tired of the pureed food all the time.  Well, uhm, that plus I've heard my mommy say that she's ready for me to be eating "big kid" food!

I know, I know....  I still have a long road to travel with eating, but teeth would definitely help!  Yes, I know my mommy would miss my toothless grin!  But that's ok!  She'll get over it!

So, it's time...  You know, I can't stay little forever - we all need to grow up at some point in time. 

Thanks for listening,

Sincerely,

      Colin



31 for 21 - Day 16!!

{Silent Sunday}



31 for 21 - Day 15!

Being thankful for a non-mobile child!

This evening was one of those times that I was super super super that I have a non-mobile 12 month old!  Thursday Colin came down with a stomach bug.  Luckily it was short lived! He threw up twice, never ran a fever, and Friday morning he was back to normal - ready to go to daycare.  Since Colin loves his mommy SO much, he decided to share this bug with me!  What a nice kid, huh??

Steve, Colin and I had been out shoe shopping and the whole time I felt kinda lousy.  Steve asked me if I wanted to go out to dinner and I told him no - I just wasn't hungry and my stomach felt "off."  Well, as I drove home, I started to feel worse and worse!  Blech!  Steve had to mow tonight since Sunday was going to be a busy day.  So, it was me and my nasty germs trying to take care of Colin!  Luckily, I was able to set Colin on his playmat and he was able to just sit there and play!  I was able to lay on the couch and not worry about Colin going anywhere.  NICE!!!  So, at times when I gripe that I wish he was at least crawling, I need to remember nights like tonight!  There are definite benefits to him NOT being mobile!!!



31 for 21 - Day 14!!!

This afternoon we had our annual IFSP meeting with 1st Steps for Colin.  We actually have to finish it this week since our coordinator didn't have all of her information together.  We need to get more therapies lined up for Colin.
From his last evaluation, PT decided it was time to start physical therapy.  I'm a little disappointed in myself that I didn't push this to start sooner.  We also had a speech evaluation (to look at his feeding "issues.").  The speech therapist gave us some tips to help Colin and suggested that maybe we have a speech therapist on "consult" who works along with his current OT.
So, today we talked about getting PT going - 1x/week for 60 minutes.  That will definately be interesting for Colin!!  When his OT does anything physical with him during therapy he gets MAD MAD MAD!!  So, an hour of that will be very interesting.
Our coordinator asked what we wanted to do about Speech to address Colin's feeding issues.  I told her that I really felt like he needs some help - since his evaluation there's been no changes or improvements.  I asked if it was possible to have a therapist come in like 2x/month to get him going - or more if necessary.  She said that was definately possible!  So glad!!!  I really want to get the boy eating better (although having teeth would definately help!).
One step at a time, right......  She will be back on Tuesday so we can finish everything up.  Hopefully by then she will have contacted the necessary agencies and have some ideas on when we can get Colin's new therapies started.
One of the joys of being a full-time working mother - not sure when these therapies will fit in with our schedule!!!!  But, the good news is that his daycare has agreed that it will be ok to have them come in and do his therapies at the center.  That will be a huge relief - there's not another moment in the day where I can fit anything else! 
Looking forward to getting these started and hopefully see some changes and growth in our little guy!

31 for 21 - Day 13!!!

Why I am glad to be a Mother to child with Down Syndrome

Many people today are blogging about this same topic...  So I looked to it for inspiration!  Some of these things I know I've mentioned before on previous blog posts - but that's ok!  

1.  Colin has taught me a lot about patience!  I've learned to slow down and smell the flowers.  I've waited longer for the milestone, and learned that it's ok to wait. 

2.  Low muscle tone is ok!  He gets to stay a baby longer.  I know he's getting heavy, but that's ok!  I enjoy snuggling with him and holding him.  At least he's not anxious to get down to run everywhere!  He loves being carried and held by mommy!

3.  Down Syndrome has opened my eyes to a whole new world!  I've been introduced to some new people who are wonderful!  I've learned about some of the most adorable children I've ever seen!  I look at toys in a whole new light.  I've learned about Early Intervention.  Lots of things that never had entered my mind!

4.  The features of DS are part of what make Colin so extra cute!!  Those little eyes, his tiny nose!  His curved pinky on each hand.  His tiny ears.  I love all of his features!

5.  Colin has made quite a positive impact on our family!  He's only helped to strengthen my marriage to Steve!  He's taught Natalie how to love more then she already did!  He's taught people around him that DS is ok - it's better then ok!  Everyone he has come into contact with has fallen in love with him!!

31 for 21 - Day 12!!

Does it get any sweeter?

31 for 21 - Day 11

Abilities vs. Disabilities

I hate the word "disabilities."  I don't believe that Colin has disabilities - I feel that he has different abilities!  I know I've mentioned it before, but I have a hard time with milestones.  I know that I really just need to sit back, relax, enjoy where we are at with Colin right now, and now that it will all come - in time!

He may not be walking - or even crawling, but who needs that?!?!  I don't think that's a disability - he still gets to where he wants to go by rolling!  And he has the ability to be one heck of a sitter!  He's pretty strong.

Colin has the ability to charm the pants off anyone.  Last week, I didn't have him with me at Natalie's gymnastics.  I had 3 different ladies, at different times, say to me, "Where's my boyfriend?!?!"  He has charmed them all - it's probably one of his strongest abilities!

Colin has different abilities - I'm sure there are things he does that other 12 month olds don't do.  Those aren't disabilities - all people have various abilities.

Colin's time will come - he'll get it all eventually.  So I might have to carry my little guy around on my hip for longer then most mom's would like - that's ok.  Because he's little, he has the ability to NOT kill my back!!!



Mr. Serious!  He has the ability in about 2.5 seconds to be laughing - his face is constantly changing!  Love this little guy.

31 for 21 - Day 10!!!

Why my brother is EXTRA special!

......by Natalie

Today I have a guest blogger!  It's a big day for her - HER BIRTHDAY!!  Natalie turns 8 today.  So, in honor of her birthday, she is going to tell me why her brother is extra special - I'll type for her (it goes way quicker!!!).  So, here we go.

My brother Colin was born with down syndrome - that makes him extra special.  He has 47 chromosomes and I have 46.  Sometimes he needs more help.  Even though he's 1, he's still not crawling or walking.  I help him try to crawl, play with toys, and read him books.

My favorite thing to do with him is make him laugh.  To make Colin laugh I "tickle monster" time!!  I also make funny noises and faces that he really likes. 

I want Colin to be a healthy kid as he grows up.  I hope that he learns how to play musical instruments.  I hope he becomes a doctor.

I want people to know that my brother has the best smiles in the world. 

I love him a bazillion gillian pieces!  He's the BEST little brother that I could ask for!

This was taken the 1st day he was alive.  He was cute even here!

See!  He has 47 pieces to love - and I love all of them!!



31 for 21 - Day 9!!!

Our 1st Buddy Walk!



It was awesome and we all loved it!  My parents/sister/neice/Steve's parents all walked together.  It was great fun!  Our weather was fabulous - nice and warm which is crazy for October!

It was great to support the down syndrome association - obviously something we believe strongly in!  The walk was pretty short - just around the lake at the fairgrounds.  My sister and I commented that we could walk around a 2nd time.  But Natalie was hungry. 

They started with a balloon release - it was cool to see the yellow and blue balloons float away.  Natalie really liked that!

Here's our whole team that came out to support down syndrome and Colin!  I love that the parents from both sides were there.  My sister was SO excited to be there!  We are blessed with an amazing family!

And here's the star of today's show:

We look forward to participating in many more Buddy Walks each year - especially as Colin gets older.  It'll be fun to hang around, see him interact with other children that have DS.  All the kids were adorable today!  They had a DJ there - and it was super cute to see all the kids out there dancing and enjoying the music.

Fun times!  And thanks for our families for supporting Colin!!!!!!



31 for 21 - Day 8!!!

So excited for tomorrow!!  It's our first Buddy Walk!!  Last year, Colin was just a few weeks old.  With breastfeeding struggles, and him being so little, it just didn't happen for us.  We are so excited to be joining them this year.
The 4 of us are walking along with my parents, Steve's parents and my sister and neice. 

Tomorrow's blog will be EASY!  Full of Buddy Walk pictures and the stories of the day!!!! 

I'm so glad our fabulous family has decided to join us, it means a lot to us to have both sides here to support Colin and such an important cause.

31 for 21 - Day 7!!!

My Rock



My husband Steve is my rock!  We've been married 2.5 years and they have been the BEST 2.5 years of my life.  I said to him the other day, "doesn't it feel like we've married longer then we have?"  And not in a bad way.  Maybe it's because we've known each other so long. 

But since we received Colin's diagnosis Steve has been my rock.  AMAZING.  Without a doubt.  As I have been on this journey I have experienced multiple emotions.  There are times I've been ok with it all.  There are times I feel like I can't handle it.  There are times that I've questioned WHY Colin was given to *us* - but like I said, Steve has been there 100%.  There have been moments of complete irrational comments/thoughts and he has always been able to talk me down!!

He is the best dad - so involved and it's obvious how much he loves his little guy!  He's amazing.  I can't wait to see how their relationship grows as Colin gets older.

It's been fun to see Steve with Natalie and how much he loves her!  I can't wait to see a similar relationship as Colin grows.  Fun times!

31 for 21 - Day 6!!!!!

Thankful Thursday

It's Thursday, and it's a beautiful day here.  We don't get many October days when it's in the 80's like today - definately something to be thankful for!!  Driving home from school, it got me thinking how much Steve and I have to be thankful for....

I have said it before - I have an amazing (almost!) 8 year old.  She is a heck of kid - and I'm constantly amazed by her.  She has such a good heart.  She's caring.  She loves her brother so much and I know that he will have a great advocate in her as she gets older!

I think about how much I have learned since Colin was born just over a year ago.  In fact, my learning began when we received his DS diagnosis in May of 2010!  I was one of those moms from the beginning of this journey who wanted to know exactly what was going to happen.  Of course, most of that couldn't be answered.  I was thankful to be able to have Colin near our house at St. Anthony's (they don't have a NICU) since our doctors were comfortable that there wouldn't be any surprises at his birth.  Everything went the way we wanted it to.

I am thankful that I was able to breastfeed and pump for the first 10 months of Colin's life.  This was so important to me - and we went through a lot to get to that point.  {Thanks Lavawn!!  I LOVE YOU!!  I couldn't have made it without you and your amazing support!}  So many babies with DS aren't able to breastfeed and Colin did pretty good. 

I am thankful that my little guy wasn't born with a heart defect.  That was my ONLY concern I had throughout the last 1/2 of my pregnancy.  We knew there *shouldn't* be anything major - his fetal echo and multiple level 2 ultrasounds showed his heart looked great.  But of course, we wouldn't know 100% until his echo at birth.  I'll be honest, that would have set me over the edge - I'm not sure I would have been strong enough to handle that! 

I am thankful that throughout Colin's 1st year, he's been a healthy little guy!  Sure he's had some respiratory issues - sick a handful of times, but I'll take that!  Sure he's watched closely by a pediatric endocrinologist for some slightly elevated thyroid levels - but I'll take that!  Sure he's been on the tiny side - but again, I'll take that! 

When I read about families who have children with DS that struggle or medical issues, I realize how blessed we truly are. 

I am thankful for Colin's extra chromosome...  In fact, I'm not sure who he would be without it!  It has certainly made me one lucky and thankful momma!

31 for 21 - Day 5!!!

Tuesday, Tuesday.......



Baby boot camp day!  Therapy time!  Every Tuesday Colin receives OT at 4pm.  I love his therapist.  She is awesome with him.  She totally judges his mood and his cooperation level and decides from there what she will do.  Everything she does with him is therapeutic in some way - I love it!  I totally look at play through different eyes now. I look at toys different then I ever did.  I'm so focused on what I do with Colin at home in the evenings - I always try to encourage something we worked on in therapy that week.  Poor kid.....  He doesn't even get to be a baby.  It's ALL about work, and therapy.

He will be starting PT shortly.  We have our IFSP meeting next Friday and hopefully that will start the ball rolling.  He already has the recommendation, now we will just have to find a physical therapist who will work with our schedule.  I'm hoping that PT can go to his daycare to provide his services there.

Colin yesterday in therapy:

Oh great....  Every band director mom's WORST nightmare!  Give the boy crash cymbals.  {groan!}

Yea, that's right Colin, put them IN your mouth!  Somehow, I don't think Susan had that in mind!!

Ahhh...  Now comes the physical part, this is usually when he starts to get annoyed. 

See, I told you...  He's NOT happy now!

Ok, so maybe some peek-a-boo will help distract Colin.... {he's mad that he's up on his knees!!}

See!!  The fussing is GONE!

And......  There he goes again.  Boo.

Working on getting on all 4's...  This didn't last too long - then he got mad!  But he got there for a few. 

I'm proud of Colin for all of his hard work in OT.  It's not easy.  For most babies, these things come easy.  For Colin, everything is about work and learning how to do it!  But I know, he'll do it all - on his own time.

31 for 21 - DAY 4!!!

FRUSTRATION

I. Just. Want. To. Scream....  Today's post will not be a positive one - it will be full of negativity and frustration.  All because of medical insurance.

Colin's doctor sent in a request for him to be eligible for the RSV vaccine this year.  It is given every month, for 6 months - November through April.  On average, it's around $2000 per injection.  That's a lot of money.  Today my insurance called me and said that it is not "medically necessary" for Colin to receive it.  Really?  Not medically necessary huh?  Well, I'm glad they feel that can make that judgement call when they don't even KNOW my son!!  If my son's doctor felt that it wasn't medically necessary would she have sent the paperwork in?  I don't think so.  In his short year of life he has already had multiple colds (that linger for WEEKS!  Not days like a "typical" child), 2 rounds of bronchiolitis and one round of RSV/pneumonia.  Twice we have been in the ER for support because his breathing was so bad.  One of these ER visits led to Colin being sent up to Univ. of Chicago - Comer Children's Hospital where he stayed for 13 days.  But they're right, it's not medically necessary.

I was told by ALL the dr's that saw Colin through his LONG hospital stay that children with DS are more prone to RSV.  It can also hit them HARD and FAST.  I can tell you from experience, that when Colin had RSV he went down hill in literally less than an hour.  But oh, they're right, it's not medically necessary for him.

I politely informed the lady on the phone (I know, she's JUST the messenger - she didn't make the decision) that I was glad that Anthem felt like it wasn't medically necessary.  Because if he lands in the hospital like he did last time, it will be necessary for them to cover the bill - which last year topped $100,00.00.  She apologized, she understood - it wasn't her call.

But as a mother, it is absolutely terrifying to me.  I can't imagine EVER having to go through that again.  Breathing is natural, it's supposed to be easy.  But when your baby has his lungs and passageways covered with secretions, it's not easy to breathe.  Watching them struggle to breathe is scary.  All because they don't want to pay.  Because it's not medically necessary.

Because I know that I am Colin's biggest advocate I will fight - we will appeal and see where we get.  I have to fight for my son.  That's my job, because it is necessary.

Sooooo....  To end on a happier note, here are a few pictures of him today after therapy.  He was having a battle with the penguin.  I'm still not too sure who won.

Tomorrow will be more positive, I promise.  I was going to post tonight about Colin's therapy session today.  That'll be tomorrow.  :-)

31 for 21 - Day 3!

Everyone wants the best for their children - I think all parents feel that way.  When I received Colin's diagnosis one of my first questions was, "what will happen?"  There are so many unknowns about his future - who will he be?  How will he do in school?  Will he be able to support himself?  I know I should focus on the present and not think so far into the future because I don't want to miss anything in the present!!!

One of my close friends from work sent me this link today.  When I watched the video, and read the article, it brought tears to my eyes!  The excitement in her eyes, and her parents reaction tells it all!  They are parents who only want the best for the daughter - DS or not!  I would love for this to be Colin someday - well, maybe not homecoming queen, but maybe homecoming king!  Because we all want our children to be respected, liked and loved!!!

http://www.huffingtonpost.com/2011/10/02/mariah-slick-down-syndrome-homecoming-queen_n_991098.html?icid=maing-grid10%7Chtmlws-main-bb%7Cdl7%7Csec1_lnk1%7C100831

31 for 21 - Day 2!

Ok...  So far so good - I'm on day 2, I have something to say and I'm actually getting it typed TODAY!  Woo Hoo!  Definately headed in the right direction, right???

I know I'm mentioned this before, but when we're out in public, Colin always gets a HUGE reaction out of people.  So many people comment on how cute he is, they talk to him, they get him to smile - all that stuff.  And I'm always wonder, "do they know?"  No one has ever stopped me to ask about that magical chromosome - or asked if he has DS, or comment on it.  I don't think his features are very strong - and maybe that's why we've never been "spotted."  I look forward to the day though when we are!!  I'm proud of our boy - I'm proud of his designer genes, and maybe someone will one day pick up on that!

Since having Colin, I've only approached 2 different families about their kid.  One was the little girl in church (which, ironically is Natalie's CCD teacher this year!!).  The other was at Natalie's gymnastics one evening when we were there for a makeup class.  The little boy was so taken by Colin and spent the whole class time entertaining him.  It was cute.  My hope is that as time moves on, I'll feel MORE comfortable approaching people when out in public! 

Here are a few pictures of my little guy this evening after he had just finished eating.  And yes, I did wash the sweet potatoes off his face - apparently, not very well! 

See ya tomorrow!!!  (ok, now I'm off to figure out what tomorrows topic should be!  PRESSURE!!!)

31 for 21 - Day 1!

{Reflections on the last year....}



Yes, October is breast cancer awareness month - but it's also down syndrome awareness month!  Throughout the blogging world, many take on the 31 for 21 challenge!  A blog each day in October to help raise awareness about our amazing children...  See, they are very much the same as "typical" children - they are just extra special because of that magical extra #21!!  So, what's a perfect way for me to kick off 31 for 21?  I will reflect on the last year.....

Last week Colin turned ONE!!  It's hard to believe that a year ago my little guy was born.  My 7lb 2 oz little guy has grown into a 19lb chunker!!  I've learned a lot over the last year and I wouldn't change A SINGLE THING.  Well, maybe the 2wk. hospital stay in March/April. 

I still remain so thankful that we found while I was pregnant with Colin that he was going to have down syndrome.  A year ago, when he was born, I was able to just love him for Colin - and not focus on that silly extra chromosome.  Those first few weeks after receiving Colin's diagnosis were very hard for me.  I went through a huge emotional rollercoaster.  I was glad to work through those emotions and feelings while still pregnant.

Colin has taught me a lot about patience.  I think that parents take for granted and just assume that your child will crawl around 7-9 months.  Walk anywhere from 10+ months.  Sit up around 5/6 months.  Eat solids without any problems.  Know how to play with toys.  Each of these things are something Colin works at.  He receives occupational therapy to "teach" him how to play.  He will be starting physical therapy soon to help him become more mobile.  I've learned how much goes into each of these "milestones."  I HATE milestones.  I won't lie about that.  That is the one area that I still struggle with - definately could use more patience with these!!!  Colin sits like a CHAMP.  In fact, this week in OT, he was lifting his legs up while maintaining his balance.  IMPRESSIVE!  The kid isn't anywhere close to crawling yet.  But I know it will come.  And when he finally decides to crawl, it will be even more exciting!  Through this last year, it's been hard to see other people with kids near Colin's age reach these milestones when I know Colin isn't close to them.  But Steve always reminds me that Colin will do his own things at his own pace.

In many ways, I think Colin has taught me how to be a better teacher.  I feel like I have more patience for my students - especially those with special needs.  I look at them in a different light then I ever have before.  I want them to achieve, I want to work with them more, and I want them to enjoy school!

I won't lie, I still have moments where I am down, or sad, or wish that Colin only had 46 pieces to him!  But I wouldn't change it.  I just wish things came easier for him.  And I know as he gets older, there will be more struggles in life - more then his sister will encounter.  But I know that he will be a fighter!  The little boy has spunk to him!

The last year with Colin has been amazing.  I look forward to seeing what the future holds for him.