Monday, February 6, 2012

OMG!! Has it really been MONTHS since I've updated??

I logged on here this evening, and saw that mid-October was the last time I blogged.  Terrible, terrible...

I promise I will be back later this week or next to update all the fantastic things that Colin is up to!  But, here is a HUGE milestone he hit this weekend!  We've been working on this so hard in therapy.  All of the sudden he decided to take the plunge (literally!) and do it.
I believe he could be mobile shortly.  :-)  GOOD BOY COLIN!

Tuesday, October 18, 2011

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!

Monday, October 17, 2011

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,

Saturday, October 15, 2011

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!!!

Friday, October 14, 2011

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!

Thursday, October 13, 2011

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!!