Today we had a 1st birthday party in a local park near us for our buddy Miles' first birthday. Aside from the wind, it was a BEAUTIFUL fall day. We were just a regular ole' family enjoying our day together!
Happy fall!! :)Saturday, October 15, 2011
Friday, October 14, 2011
31 for 21 Day 14: The Tongue
* Calling all Mommies and Daddies with a child with Down Syndrome! I'd like to do a special project to end Down Syndrome awareness month by showing our kids live the "Good life". If you are interested, I would love it if you could send me a picture of your child either alone, with a friend/family member, with your whole family or whatever works for you! You can send it to my email @ kelliatobin@gmail.com! Thanks!*
When Colin was first born and through the first several months of his life, Chris and I were obsessed with what his tongue was doing. We over-analyzed how much his tongue was sticking out of his mouth and as we learned that it had something to do with his muscle tone, spent a lot of time doing the exercises we were told to build the strength inside of his mouth. For the most part, his tongue just kind of hovered around his lips, but I think we were so scared of the journey ahead, and because deep down I think we thought his tongue sticking out at times defined the fact that he had Down Syndrome.
It was just one of those things that we weren't quite ready for and worried so much about. When I look back now, it makes me chuckle because it's just another one of those things that we realize how far we have come. To worry about something so insignificant doesn't seem worthy now, but again, it's one of those things in our journey that got us to where we are now. Yes, it was insignificant and no he doesn't do it anymore, but heck, what did we know then?
Another reason I chuckle is because guess what? Kailey is doing it too...
...so it's not just about a baby with Down Syndrome!
...and just because I thought it was so cute, a video of Kailey giggling. Thursday, October 13, 2011
31 for 21 Day 13: Feeding Difficulties
I actually considered going back through all of my posts for the past 2+ years to see how many times I have talked, vented and cried through posts about Colin's feeding difficulties. Our biggest struggle to date is the fact that Colin doesn't have much of an appetite, he only eats limited foods (so limited I can count them on one hand), and that we haven't made any progress for a long time.
As Colin's personality and toddler-esque behaviors have emerged, the struggles have become more and more challenging. Chris and I come from families who have eaten many meals together around the dinner table and we have always done the same with Colin and now Kailey. However, there are nights where we want to pull our hair out (like tonight) where we sit there as Colin throws pieces on the floor, yells no, turns his head refuses to eat or drink because we just don't feel like fighting it anymore.
I don't think we ever expected to be spoon feeding 2 kids at the same time that are 2 years apart. Chris took Colin to the latest feeding appointment today and I think we are finally at the point that we are just going to back off for awhile. We don't leave there with a sense of relief or direction (except last visit for me because I thought I was headed somewhere) and also feel like things can't get much worse. 
This challenge is really tough to deal with. We have literally been at this for over a year now (the feeding part) and it's not getting any easier. At. all. 
Where do we go from here? Who knows...
...but we CAN say it's tiring and exhausting. We will keep trudging along, but hope that one of these days we can turn over a new leaf.What we want? The simple pleasure of having our toddler feed himself , without a fight, and something more than what I can count on one hand.
Wednesday, October 12, 2011
31 for 21 Day 12: Telling our Friends and Family
The day Chris and I received the call saying that the results of Trisomy 21 were confirmed, we were a mess. We honestly didn't know what would come next. After I spent my time crying, I got on the computer and started officially researching different things. The "rational" side of my brain kicked in and it was time to get to work. I started the blog, found other blogs, searched in google (yikes!) and found some official websites. Thanks to either the National Down Syndrome Congress or the National Down Syndrome Society, I found a guideline that I used to help write my letter to my friends and family that we hadn't told in person.
I dug back through my Colin folder in my email and found the letter as well as all of the beautiful responses we received back from so many of our friends and family members. One thing a lot of people worry about (us included), was how people were going to react to the news. I think it is hard for some people to know what to say or how to handle the situation, however, we were so incredibly lucky that everyone stepped up to the challenge as well...
"To our closest friends~
Words cannot describe how truly happy we are to have Colin in our life. He has been our blessing from the moment we found out we were pregnant and our lives were instantly transformed the moment we first held him. He is a very special baby and we were chosen to be his parents to take care of him and love him...We found out today that Colin has Down Syndrome. Chris and I felt that this would be the best way to tell you so that you had time to adjust to the news and not feel like you needed to have an immediate response. We are so happy and proud of our little boy and nothing will change that. We hope that you will be able to see him the same way that we do, as a special and beautiful little boy that we love with all of our hearts. We are a family now, so please don't apologize for his condition...God chose us for a reason and we are really trying to see this as a special job given to us.
Colin would still love to visit with his friends, so please feel free to visit him when you need some cuddle time.....
Thank you for your support and love during this time...
With Love,
Kelli and Chris"
At first, I thought I was going to try and put in some pieces of the responses into this post, but there is honestly too much to fill in. We are blessed. Everyone welcomed, loved, adored, hugged, visited, wrote, supported, and joined us in our journey.
There is never any way to know how to handle ANY situation, especially when you are thrown into it without any preparation. We have heard stories of people who lost friendships, had altered relationships and difficulties with certain friends and family and fortunately, we don't know what that feels like.
So, thank you, from the bottom of our hearts to every single one of you (old AND new) who have been there for us in more ways than I could ever list. We love you....we really do.
Tuesday, October 11, 2011
31 for 21 Day 11: Typical
Colin is a typical 2 year old toddler...tantrums and all.
Need I say anymore?
...one exciting thing though...he DOES put two words together (no book!).
Monday, October 10, 2011
31 for 21 Day 10: Therapy
When we started out on our journey in the Early Intervention system, Chris and I felt pretty overwhelmed. The first person that came to our home was Colin's physical therapist (Miss Kathy) who continues to see him today. After every visit, the therapists would write out a summary form to talk about what was done during the day and then leave a couple of exercises to work on during the day. I used to think that these were things that HAD to be done as often as possible. I was obsessed! When we would have family members and friends stay with him, I would leave a list of when he ate AND exercises that should be done. I was adamant about this. Three things I was anal about: tummy time, reaching and grasping, and I even made some friends and family put Colin on the physioball!
Yikes!
When you have never done something before, you just don't realize that although you need to do those exercises when you can, it shouldn't take over your whole day either like I felt it was doing. There was no other option than to do the "homework" that was laid out for us for the week.
As we evolved through time, we started to realize that although we needed to work on these things (and still do), we do not need to obsess over them.
...and Colin loved it!!
Sunday, October 9, 2011
31 for 21 Day 9: Just Because...
Just because Colin has Down Syndrome, does not make him stupid. In fact, because he was so smart today, he nearly scared the crap out of me!
During nap time today, I decided to put Colin in his crib because I honestly didn't want to deal with him getting out of bed. When I first put him in there, he complained like he normally does but it didn't last too long. When I peeked in there 5 minutes later, he was laying down gnawing on his hands. I was taking care of Kailey when another ten minutes went by so I decided to check again on him and he was sitting in the crib reading a book that he must have reached and gotten off of the book shelf (you'll see the pictures of the location in a few minutes). Although I preferred to have him sleeping, he was quiet, so I let him be. I had the monitor on pretty loud so while I was sitting on the couch grading papers, I could hear the pages turning of the book.
...about 45 minutes go by and it had gotten pretty quiet, so I assumed that Colin had finally fallen asleep. However, I started to hear this funny noise on the monitor, so I paused the TV and didn't really hear it again. I hit play and not even 5 minutes later, I see Colin's FACE peeking out from around the corner of the refrigerator in the kitchen CRAWLING into the family room. Immediately, my mind was flashing (was I losing it? didn't I put him in the crib? where IS THE CAMERA?!) and then I realized that my little guy GOT OUT of the crib and came to see me in the family room. Oh, and Chris and I later realized that he took a little detour into our bedroom and pulled out clothes of mine from my bottom drawer on the FAR SIDE of our bed. Now, the funny thing was that I had shut his door, so it must not have clicked in completely and he managed to get that open.
I swear, my mouth was gaping open, I was doing a mix of crying and laughing hysterically, and Colin just crawled right in, said "hiiiieeeee!!!" and came right over to the couch, climbed up and sat on my lap (mind you, I was STILL in shock at this point).
Colin figured out how to get out of the crib, GRACEFULLY mind you, and come out to the family room!
The funny thing is I didn't hear one thump on the monitor, she he must have done it really well!!
When I went into his room later, I realized that he had unloaded one of the shelves of books onto the floor, so he must have used that ramp as his way to get down (and potentially the book shelf itself! Uhhhhh.....scary!!!).
I guess we can say that we are officially done with the crib. Here I was worried about him getting out of bed!!! The crazy part was that we have NEVER seen him even ATTEMPT to put his leg up to try and get out. ...and he did.
I swear, that is the craziest Colin story in his 2.5 years of life!
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