Monday, March 21, 2011

Today is World Down Syndrome Awareness Day.

Today is World Down Syndrome Awareness Day.   I feel horrible because I didn't know this until I had to take Colt in to see his doctor, Dr. Brandy Fouch and Shasta Kessler.  He's okay.  It is just a cold, but he coughs horrible and he ran a fever all weekend so I was just being cautious.  Neither of us slept last night, he coughed nonstop.  He is feeling much better.  We are very lucky because he really hasn't been that sick this winter. (knock on wood)  He had a really high fever once from shots, but this was probably the first high fever he has had not related to shots, so we have been pretty lucky.   I think a lot of that is because we had tubes put in his ears at 4months.  The tubes were put in by Dr Sally Shott, of Cincinnati Children's Hospital, who our docs referred Colt to when we received the results from his diagnosis.  So let's discuss Colt diagnosis DOWN SYNDROME.
   It's funny because I think  so differently now when I say DOWN SYNDROME.  My throat doesn't get tight, making it hard for me to swallow.  I don't feel like everyone is hearing how hard my heart is pounding out of my chest.  Everything is GOOD!  I have to thank Colt's pediatrician's, Mount Sterling Pediatrics, Dr Brandy Fouch and Shasta Kessler and all of the staff for all they have done for my handsome little guy.  I used to sell pharmaceuticals and I know Shasta very well, so when his diagnosis was questionable I thought WHY don't we go see her.   So we did!
   He was a week old and I didn't tell her on FB why I wanted her medical opinion, I was curious to see what she would say when she saw him.  I could tell as she looked at his little lowerd ears, saw the Palmer's crease on his Left hand, so I told her a chromosomal test had been ordered but we hadn't heard anything from it.  She told me she would have ordered the same test and I think at that point I started to realize --my new baby boy has down syndrome.  Shasta and Dr Fouch both are AMazing!  They were on the phone with the laboratory at University of Kentucky Hospital while I was still there searching for Colt's results.
   We found out, the test was ordered, but no blood was ever drawn.  So, we had to take our baby to UK (1 week old) to have his blood drawn so we could just move on.  I was outraged!  Not at my pediatricians, but at the hospital where Colt was born, because the test was ordered, but the nurses failed to take his blood.  I realize mistakes happen everyday, but I know this was questionable in the hospital too, and I'm sure doctors and nurses discussed the possibility of the DS diagnosis.  The test was ordered at shift change, so I realize things happen, but it doesn't (still) change how I felt.   I was taking my little healthy baby to a hospital where a lot of sickness can easily be picked up.  I was so angry and that's all I remember about that day.
   5 days later, July 21st, Shasta and Dr Fouch call me and tell my husband and I to come into the office.  I had already started googling everything on DS.  Let me just tell you, never google anything when it comes to stuff like this. You will only find the worse of the worst. (Is that how that saying goes?)  You never hear the positives of it all!  ---I could tell on their faces the answer, but they were so positive and telling me that things will be okay.  "He seems perfectly healthy", I remember them both saying.  Of course tears falling from my face, holding my baby as tight as I could to my chest.  It was like I wanted him to know that I loved him no matter what and WE will do whatever it takes to make this work!
   They left us alone a bit, after explaining DS and giving us our game plan for next steps!  All I remember is Matt holding Colt and me telling us everything will be fine.  "He is strong Christie",  "Look at him".  Colt was a mover, he was already trying to lift that tiny little head!  I knew my son was perfect.  I think more than anything, I doubted myself.  I couldn't believe God trusted me with a child with DS.  I was terrified.  What if there is something wrong with him?  What is his life going to be like?   Dr Fouch and Shasta came back in to tell us about Cincinnati Children's Hospital and The Thomas Moore Center for Down Syndrome.  They will fully examine Colt and everything is under one umbrella.  I like the plan, they truly put themselves in our shoes and even said this is where I would go.  That's all I needed to hear.
   I remember this day very well.  It was July 23rd and off we go to Cincinnati Children's hospital.  We were going to the Cardiology dept. to see Dr  Kimball, a cardiologist.  We went back into the ultrasound room where they hooked all kinds of equipment to my tiny baby's little chest.  They performed an eeg, ekg, and we watched as the techs watched the flow of Colt's blood going in and out of the heart.  The techs talking and using a lot of acronyms and I was trying to remember my Coreg days of drug repping (heart drug) and biology days to try and keep up, but couldn't! We were back there over an hour.   Colt had fallen asleep and did a great job through it all.
We then went back to a little room and waited for Dr Kimball to come in and go over the results.  I really liked Dr Kimball.  He didn't talk down to you.  He sat next to you in a chair and went into the results in detail.  HIS HEART IS AS PERFECT AS YOURS!  "He is fine, we saw no structure or bloodflow abnormalities."   You can only imagine the relief!  From that moment on, Matt and I agreed Colt will do whatever he wants!  He will never say "Can't" because of his "xtra" chromosome if he truly wants to do something.
   I guess I want people to know that Down Syndrome is not a BAD thing.  It's a BEAUTIFUL thing!  I want Colt to inspire all of you like he has us!  I am so proud of him.  His little personality is showing through everyday.  He does have a temper!  Remember he is red headed!  Don't let that little smile fool you! lol   At the same time he is very sweet and loving.  When he wants something or tries to do something you can see nothing but determination in his eyes.  He watches everything and you can tell he is taking it all in.  I don't talk about DS a lot, because when I look at Colt that isn't what I see.  I don't see an 'xtra" chromosome.  I see US!  Matt and me!   I love what I see and honestly would not change a thing!
Just Born JULY 7, 2010


















  During that first week of Colt's life, when we didn't know his diagnosis.  I started finding blogs on DS and how families would say they wouldn't change their child.  I can remember thinking, "of course you would", "no one wants anything to be wrong with their child"--Well, how wrong and uneducated I was!  Colt has Down Syndrome and I would not change one thing about him.  He is now 8 months old, he understands everything we say, he plays pat a cake (claps his hands), he jumps in his jumparoo, he babbles, he eats (can you tell from his pics), he is sitting up, he has been rolling over since he was 4 weeks old, he is an 8 month old HAPPY little boy!
   Now, saying all of that,  some "xtra" effort has been made.  We have been doing physical therapy since he was 2 months old.  His physical therapist PT, Danielle Mains,  and his Developmental Intervenionist DI, Sherri Fulks has always pushed Colt.  They are amazing and I thank them for all they do!   They have taught us little techniques when we play with Colt to help him.  So it's all basically playing and interacting with him to get his attention and make him respond.  As you know, from my previous post, we are expecting again.  Everything Danielle and Sherri has taught me to help Colt, I plan to use these techniques to help the next Carter baby.  As parents, we can do so much to help motivate our children and help them learn things quickly. When they are young the mind is like a sponge.  I watched my sister, Trenda, who is a kindergarten teacher work with Colt.  Trenda only gets to see Colt on the weekends.  This past weekend Colt had a terrible cold and he still wanted to learn.  I will try to post the video below.

July 9, 2010  (3 days old)

5 days old




7months

8 months








Video this weekend of my sister, Trenda, a kindergarten teacher (she only sees Colt on the weekends) Only 2 weekends and look at my little man!




video


   For the record, I can remember getting Colt's results of the nuchal translucency (fluid around the base of neck) when I was 12 weeks pregnant.  The result was 2.6 and normal I think is 2.5.  He was growing perfectly.  His bones were normal, his nasal bone present, no indication of DS.  The doctor gave me a choice of an amniocentesis.   He said our chances was 3% of having a child with DS.  My question to him was, "Why would I"?  My doctor, being the Christian man he is, agreed!  Will it affect the outcome, he asked?  Absolutely not!  I had no clue that my baby had (has) DS, and look how "xtra" perfect things have turned out.  I have learned so much these past 8 months.  I look at things so different, but I think a lot of that comes with motherhood.  I feel STRONGER!  I feel like I am CAPABLE of anything! My Faith is stronger.   I realize "things happen", not what you planned, but there is a reason.  I can honestly say, My Life is far better than I could of ever planned.  I have accepted things and moved forward with a positive outlook.   Life is definitely what you make of it!  All anyone wants is Happiness and for their children to be HAPPY!

Living HAPPY As MUCH As we CAN!



MOST OF THE TIME!
  

4 comments:

  1. Great Post. It made me teary eyed thinking back to those first few weeks after he was born. He is so Xtra Perfect and I love him TONS!!

    ReplyDelete
  2. Christie, I love reading your blog. Your mom is like my Mamaw Blackburn's second cousin I believe. She was a Reynolds before she got married. Her name is Lavonne. Her brother had down syndrome and I was blessed to get to know him. He was a sweet person and I know with you raising Colt, he will be too! You are a strong person, it shows through your writing. I pray God would continue to bless you and your family!

    ReplyDelete
  3. What a wonderful post, Christy. You are a great mom and God knew exactly what He was doing placing Colt in your capable hands. Praying for you guys and baby number 2!

    ReplyDelete
  4. Just wanted to say what a beautiful boy you have...my name is Darlena and I have 3 children...our youngest is almost 3 years old and has DS...this journey is by far the most blessed journey ever! What a sweet post...Would love to add you to my blogroll if that's ok and follow your journey...I got your blog off of Bethany's ...just ahd the opportunity to meet her this past weekend...this blog world is amazing and so supportive!

    ReplyDelete