Mother's Day

Happy Mother's Day to all of the moms, moms-in-laws, grandmas, nanas, gammy's, great-grandmas and grammys, memas, sisters, aunts, and many others!  I have been so fortunate to cross paths with so many beautiful women who have been a part of my journey.  I have pretty great kids so it makes being a Mommy pretty "easy" (ha! now isn't that a funny word!).  In all serious though, I am one blessed Mommy!

Special Olympics Young Athlete Program

On Saturday mornings, Colin participates in the Special Olympics' Young Athlete Program.  The sessions are about 45 minutes long where there is some structured circle time and then freedom for the kids to participate in a variety of activities.  We always have fun when we go, and Colin certainly enjoys it as he is all over the place.  I was really pleasantly surprised today because during circle time, particularly with the parachute, Colin did really well at following directions and doing what the instructions were at any given moment.  He really had a lot of fun this morning and I just love watching him go from activity to activity.  

However, Chris and I were really surprised (quite pleasantly!) when Colin walked over to the cones that were set up with bars at different heights to step over and just walked right over each one perfectly, even though some of them were quite high.  I caught it on video the second time, however, he tripped a little bit when he got started.  We were so proud!

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Tonight

I Believe in You

I am so glad I didn't end up writing a post yesterday because my emotions would have gotten the best of me.  Yesterday was one of those days; you know the ones that creep up on you when you are least expecting?  I haven't had one in a long time, not even when we started Colin's transition to preschool and we were presented with a lot of numbers demonstrating Colin's current level of development.  I think the rough day was a culmination of a lot of things; Chris being away, the kids just generally not listening or behaving, screaming kids, ripped apart house, and so on...

When I tried putting Colin to bed last night (after the the craziness had ensued), I spent an hour laying with him trying to get him asleep.  When that didn't work, I tried leaving, but he followed.  When that didn't work, I held the door shut, but he thinks it's a great idea to hit his head on the molding around the door.  After an hour and a half later and he was still wide awake and fighting me, I just started crying.  It was a culmination of the fact that it has been a challenge, that he was beating Kailey up and wouldn't stop when asked, and then I couldn't stop thinking about all of the things that have been creeping up on me but I have typically let just roll off my back.  It was suffocating me last night thinking about the things we are trying so hard to teach Colin, but haven't quite gotten to the other side of the tunnel yet....safety, not doing something we tell him over and over again, letters, numbers, colors, potty training,  and so on.  I was thinking about all of the things that we ultimately have a lot to help him with and start to question if we are doing enough. When Colin followed me out after all of this, he ended up just sitting with me on the couch and falling asleep with me.  HE made me feel better after the little stinkie's bed time antics started it all!  The whole day wasn't like that either, so I'm glad I didn't post yesterday...

I decided to take the kids up the Turtle Back Zoo with my parents since I hadn't been there since I was a kid.  I had high hopes that Colin would be more interested since it was outside and not dark and confined like the aquarium was.  

Generally the kids were pretty interested in the animals, but Colin definitely likes them from afar.  He does not like to get too close.  One of my favorite pictures from the day was this next one because Kailey looks like she thinks something is hysterical... 

They had a cute area where you could go into a pen and touch the animals so I wanted to try and see how Colin would react.  He walked in with me fine, but when he realized we were getting close he practically jumped into my arms.

When we were done, we went to Nana and Granddad's favorite pizza place that I was at when I was a little baby too.  No pizza for Colin though, just his staple cottage cheese and fruit.

Kailey on the other hand, will eat anything.

One thing that has been cracking me up about Kailey lately is her obsession with hanging things off of her arm.  She is a purse girl and has a little tote bag and new purse from nana and Granddad.  She likes to collect things around the house and put them in her bags.  If you are missing something there are two places you should check: Kailey's purses or behind the couch where Colin likes to put throw things.  

  

 Today we had the FRA (Family Resource Associates) and Monmouth University Day of Play with the Hawks PossAbilities walk.  We walked two laps around the track (Colin's first year walking!) and then played various sports with the Monmouth athletes.  Colin was all over the place and loving it and even walked the whole 2 laps around the track.

 

It was a fun day and reminded me of a book the Easter bunny got for Colin this year.  I know that there are days that parenting is just tough and has nothing to do with the fact that Colin has a disability.  However, yesterday was a combination of both and although I had a tough moment, I went to sleep (holding my little boy) and knew/hoped things would be ok.  

"I Believe in You" by Marianne Richmond

You came into our family with a big, big job to do, the one of growing up into the one and only you!

Some days, it's super easy.  And others? Kind of tough. Monday's "bring it on!" turns into Friday's "had enough".

Whether it's sunny or stormy, whether your happy or blue, I'm here to say without a doubt, that I believe in you!

When your project seems too hard, and you want to go to bed, I believe in your smart thinking to learn and grow instead.

When the team you like says "no, some other kid will play," I believe in your awesome skills to shine another way.

When the monsters in your closet seem too big for you to fight, I believe in your true courage to know it'll be all right.

When you make a big mistake or you choose a hurtful way, I believe in your stand-up truth to say what you should say.

When the day dips up and down like a roller coaster ride, I believe in your quick laugh to love the lows and highs.

When you look into the mirror and question who you see, I believe in your true beauty that shines through from you to me.

When everyone else stands tall, looking so tough and strong, I believe in your brave spirit that's in you all along.

When your best friend is unkind or doesn't want to play with you, I believe in your playful heart to find new friends who do!

when learning something new makes you wan to stop and quit, I believe in your great attitude, to go and conquer it!

Your job of growing up takes hard work I know, but each day is an adventure.  Each problem helps you grown.

And I want you to remember, I'm here to watch the ride.  I believe in one amazing you with all of my love and pride!

What a Cutie! (Not to brag...)

I looked at this picture of Kailey all day long.  I am so in love with this little girl and look at the sass in her pose!  It makes me giggle...

Today Chris took Colin for his 3 year check up to Dr. Uma's office.  We were pretty happy with his stats as he has gained 5 pounds in a year and has gone from the 10th percentile to the 25th for weight and height in that span of time.  It's interesting how closely we watched his weight for a long time when we were going to the feeding clinic, how his eating habits have actually worsened, and he still gained weight!  The human body amazes me sometimes.

Since I was unable to be there, Chris called me so she could tell me everything over the phone.  She was very happy with everything, however, his latest blood work showed that his white blood cell count was low again.  Although she doesn't seem to concerned about the numbers (the numbers that go along with this apparently were ok), anything to do with white blood cells and the rest of those counts throw me into a tail spin and I get that sick feeling in my stomach, just because.  She feels the number could be low due to teething, cold, allergies, etc. and since the numbers weren't that far off, it seems very practical.  We just have to repeat the blood work in a month.

Our little boy is now 28 pounds, 10 ounces.  Very close to 29!

Wednesday Tidbits

Yesterday we had our long overdue visit to the pediatric gastroenterologist with high hopes that we would have some more definitive answers about Colin's overall feeding, eating, and diet concerns.  We had spoke to our pediatrician a few months back about seeing one when we were at our all time low with Colin's eating (or lack thereof).  Unfortunately, that appointment had been rescheduled a few times, and since then, we have noticed that Colin seems to have a bit more of an appetite.  Our concerns were that there was something more serious going on internally that was being missed.  

{sigh}

Not what I expected.  The doctor had a medical resident and student there so we saw them first.  I am all for medical students because we all have to learn at some point, however, I was very disappointed with how he handled his questioning (I felt like we didn't belong there, that our problem was trivial to what it could be) and his lack of people first language.  He never referred to Colin as having Down Syndrome, but rather, "Downs kids".  Yikes, he is a relatively NEW student!

That started it, and to top it off, it was 500 degrees in the office because they hadn't turned off their heat yet.  Since it was hot and I was flustered, I was sweating.  I mean, dripping. The doctor came in and was initially great with Colin and how he interacted with him.  However, his people first language was pretty lacking as well and he really had nothing to say about anything.  Now, I do want to preface this by saying that I am very thankful he is not concerned that there is something more serious going on, but we've been at this for 2 years now and have never been giving a solid answer.  So, THAT is why I was more disappointed than anything.  Since he is in the 50th percentile for weight and height compared to other "Downs kids", he felt that he was nourished and a healthy weight and height, reflux and constipation issues are pretty typical, and any of the more serious intestinal issues usually present themselves right from birth.  

So, we left with a script to increase the reflux dosage and to come back in a month.  Again, we do know  that there are sensory issues related to children with Down Syndrome as well as the general behavioral issues for a typical 2 and 3 year old when it comes to eating, but, we just were hoping for a better solution to the problem.  Thankfully, Colin DOES seem to have more of an appetite lately, but only for his yogurt, cottage cheese, pudding or vanilla ice cream.  

In the end, I at least got an afternoon with my little boy and a lunch date...that is ALWAYS a positive.

Kailey is definitely teething which makes her so much more dramatic than she already is.  She is such a little girl that it makes me laugh.  

...and, some dance moves from Colin:

Literacy Night

Tonight was literacy night at Colin's new school where different teachers were having a "story time" and you could also walk around and browse the book fair.  Since Colin had just started, I thought it would be nice to show our face and use it as an opportunity to go and see what Colin has been up to lately.  Since Chris had to work, Aunt Kimmy kindly watched Kailey because I was concerned about having two that were not interested in paying attention.  

When we first got there, we went into the book fair which was in Colin's gym area.  He was not interested in checking out the books, but rather, showing me all of things that he likes to play with in there (like baskeet-ball).  Since his teacher was going to be doing his book reading, we went into the classroom to say hi to her.  It was nice to chat with her for a few minutes and he showed me one of his favorite stations (the computers) and the dollhouse area.  It was so interesting to watch him play with the dollhouse because he was walking "daddy" up the stairs, putting him to sleep, washing his hands, etc., all things that he doesn't do when he plays with things around our house.  Around our house, the dolls and animals often end up thrown behind the couch or hidden in other areas, certainly not playing with them constructively.

I was so excited to watch Colin in action when Miss Liz started with a few songs that Colin actively participated in.  He kept looking back at me as if he were saying "hey mom! are you watching!?" and knew all of the songs that they did.  However, as soon as she took the book out to read the story, Colin stood up, said no and did his little hand gesture thing when he doesn't want to do something all the while mumbling under his breath.  I spent the first few pages of the book trying to wrangle him in while he put up a whining, yelling fight in front of all of the other kids and parents listening intently to the story.  I finally just let him go and walk away and then picked up and stood with him for the rest of the book.  After the story, it was time to do a quick craft which thankfully, he was interested in again.  Low and behold, the craft...a duck hat!