Tuesday, March 30, 2010

Feel Better Mo!

Our good friend Mo is always such a big help to us and Colin! Unfortunately, she just had knee surgery so we stopped by yesterday so that Colin could give her a big hug to make her feel better!
Feel better soon Mo!!

Monday, March 29, 2010

Special Visit

Guess where we went today? We got to go to the Special Olympics of NJ headquarters in Lawrenceville, NJ!!

Because of the Polar Bear Plunge, I was lucky to meet [electronically] Kathy Edenzon, the Young Athlete Program Manager through the Special Olympics of NJ. We have been in touch and today was our chance to finally go out there and meet her, as well as many of the other staff members that I have communicated with as a result of the plunge. We also had the opportunity to meet Mark Edenzon, the President of the Special Olympics of NJ. It was special for me to meet Kathy and Mark as their son also has Down Syndrome.
I will admit that I was a little bit nervous as we arrived and walked in. As soon as I walked in, I got this feeling. There are beautiful displays with lots of pictures of many athletes and proud moments. We got a personalized tour of the facility which is absolutely beautiful (please see the video below!). I had to keep my emotions in check because I was so honored to be there and because I got such a fun glimpse of Colin's future! They have a great workout facility for the atheltes and their families, a beautiful gym, libraries, young athlete playroom, and future turf fields that are soon to be built outside, and more!



Colin was so happy to meet everyone and had lots of smiles to give out! We are still learning a lot about the Special Olympics and can't wait for all of the fun activities that we have in store for us in our future. We got Colin signed up for the Young Athlete Program which involves a great kit of equipment for us to use with Colin as he grows and gets big and strong so that one day he is ready to participate! You can get more information about the Young Athlete Program here including registration forms and more about the program (or from my sidebar on the blog). The kit is such a great way to get your young athlete started!
If you are interested to check out their website, there is so much information that you can get by clicking here.
What a great opportunity! We are excited for what the future holds and for getting to know these wonderful people better!

Sunday, March 28, 2010

Colin is Bearing Weight!!

Yep, Colin definitely told me this weekend to chill out from worrying.

He did so by showing us that he can bear weight on his legs!! I'm not sure what happened on Saturday at Logan's birthday party, but Colin decided all of a sudden that he would put weight on his legs and stand and dance!! We love it!! He particularly loves standing and dancing to the turtle that sings the number song! We are so proud of Colin!

video

Saturday, March 27, 2010

Happy Saturday!

What a nice Saturday we have had so far today!
Jorie and Zach slept over last night because they had something they were attending nearby late Friday night and early Saturday morning. It was so nice to spend the morning with them and Colin was so happy to wake up and see his roomies!
After they left, we had a great time singing "If you're happy and you know it" as a family. Colin can clap, kick his feet, and almost shout hooray! during the song. He had his own "throne" and was so happy! He would start to laugh and yell when we would ask if he wanted more. It was fun!

Later, Colin and I needed some things from my favorite toy store, Jackrabbit Toys. I am so in love with this store! It's a little bit on the expensive side, BUT so worth it because they have the most unique toys! Guess who was there? The EASTER BUNNY!!

Colin didn't really react either way. He was so interested, but if we had a few more minutes I think he would have started reaching and touching the bunney.

Later, we went to Colin's friend Logan's birthday party! Logan just turned 1 and he is only a few weeks older than Colin. We are so excited that we have been getting to know Logan and his family as they are also on a similar journey!

The buddies were so excited to see each other and were so cute together! It was fun to see them hanging out with each other.

Mommy and Colin got a self-portrait together (hehe) while we waited to watch Logan blow out his candle!!
Colin tried some of the yummy cake and loved it! I was also pleasantly suprised to see that he enjoyed wearing the birthday hat! We had a great time! Happy Birthday Logan!!

To end the night, Nana and Grandad came over for some snuggling :) What a fun start to the weekend!

Friday, March 26, 2010

Thank You...

Words cannot express how truly grateful I am to all of you for your words of encouragement through my little bit of rough patch I have had this week. I read through your comments several times because I was so thankful for them.


I will admit that I have had an emotional week for many reasons, between a buyer falling through on our house, work stress (Gov. Christie is really messing with NJs public education ), and as I talked about yesterday, my frustrations with Colin's gross motor development. I have cried at least once every day [if not more...lol].

However, it's over. You have all helped remind me that this journey has its challenges, but you just have to keep working through...(as does life in general!)

...and thanks to one special little boy, I am also reminded that there are some really good days, and some days where you just don't feel like doing what you are supposed to.

Miss Kathy came for PT this morning, asked how the week went, and I started getting emotional! We are so thankful for Miss Kathy and Miss Darlene for being there for Colin AND for us!

Miss Kathy pointed out (as did some of you), that Colin has been doing really well lately in oral motor development/speech and fine motor development so his gross motor development may just have taken a back seat. She reminded us that Colin is an observor, he loves watching what's going on around him and is content just hanging out where he is. Some kids are motivated physically, while some are also motivated socially (which is definitely Colin). She also said that he is doing really well physically, but we are at a point where these new skills are going to be more difficult to accomplish.

I also think that deep down I have focused in on Colin's 1st birthday and had set certain expectations for that date. It's silly, I know. I think it's ok to set the bar high, but to be patient because reaching that bar might just take a little while.

[Disclaimer: here come some more tears, happy tears though!]

...because look what Colin did for Chris and me...

He was on all 4s for about 10 seconds...

...and then was able to bear weight on his legs!





After PT, we went to Colin's school and had a meeting with one of the owners, and the two directors. We wanted to voice our praise for how happy we have been with Colin being there, but also, to voice our concerns for the future. It was such a great meeting and we felt so rejuvenated afterwards. It was great just to get out how we were feeling and to be on the same page with them.

So you know what we did tonight? We went out to dinner to Olive Garden to celebrate our family. For our good days and our bad days and all of our in between days.


Thanks for your support!

Thursday, March 25, 2010

Blood, Sweat, and Tears

...well, not quite the blood, but certainly the sweat AND tears.
That's been our house lately.
Granted, Colin IS having a rough time between teething and not feeling the greatest.
But, I feel like we have hit a "wall" of sorts in gross motor development. We are trying to move forward with Colin being up on all 4's and weight bearing on his legs but this is going so. slowly (as I would expect).
However, as soon as (literally as. soon. as) you put Colin in a position where he has to work hard, the hands instantly fly to the mouth and he cries and moans. We have tried snuggling him, we have tried working through this, and we have tried letting it go, but NOTHING is working. Well, of course letting it go works, but then we are not working on anything!
I know that he will do things eventually, and I know that he is just doing them on his time, but it is hard for me. It is hard for me because for the 1st time in his almost year of life, he seems like he is not trying at all.
Is it the teeth? (Very good possibility, one that I would like to believe.) Orrr, he is self-soothing? I mean, NOTHING has popped through yet, and he IS uncomfortable at times, but it's hard to tell. If it's the self-soothing, then what are we supposed to do? I will tell you based on my attempts that trying to get a baby to do something he just doesn't want to do, doesn't work.
We will keep trying and chugging along...
We are also still trying and working on "chunky" foods. This is also going slowly, but, it is progressing. Colin refuses any bit of chunk if it's on it's own (fruits, veggies, scrambled eggs, etc.), but if you mix it in to something smooth, then there is a great chance that he will eat it.
For example, take this mornings breakfast. Scrambled eggs and one of those granola DHA breakfast things...(has the eggs mixed into it on the right).
Colin hates the chunks so much he refuses to touch them unless it's to "sweep" them off of the tray.

(This picture is mid-sweep)

Here is Colin's pic #1: Scrambled egg on its own

He is NOT having it!
(Please notice that the egg hasn't even made it INTO his mouth yet)

So, I then tried the scrambled egg mixed into the "smooth" breakfast, pic #2: Not necessarily a bad face, just an "unsure" face.

However, then Colin decided that the eggs mixed into the "smooth" food wasn't that bad.

Yep, this is what we are dealing with. Makes you kinda laugh, huh?

Happy Birthday Aunt Beth!!

Mommy really needs to get on the ball for these birthday posts! Almost every single one this year has been late!

Soooo....

HAPPY BIRTHDAY AUNT BETH!! I really hope you had a great day yesterday! I can't wait to see you again soon! Thanks for all that you do for me!


I love you!
xoxoxoxoxox
Colin

Tuesday, March 23, 2010

Poor Baby!

It's been a rough few days with this baby! Between the croup and teething, Colin has off and on been completely uncomfortable! The cough seems a little bit better (just more "wet" than "dry") but he is still teething with absolutely nothing to show for it.
Those little hands are BOTH in as far as they can reach and being used as a comfort while he gnaws on them...loudly. Unfortunately, he doesn't want anything to do with teething rings, cookies, or the like.
Tonight, we put him to bed as usual, but then he started screaming this horrible cry. I partly think it was the teeth and partly because he had moved so much he was hitting his head on the music mirror hanging in his crib. So, I brought him downstairs and snuggled with him.
Believe me, he was SO eating it up. All I could think about was being a kid when something "hurt" or I didn't feel well, laying in the living room past my bedtime while my Dad rubbed my head. I thought I was so special and I'm sure the same was for Colin. Just when I thought he was asleep, he popped his little head up for Daddy.

I can't resist any attempt to make Colin feel better and to snuggle...

Monday, March 22, 2010

What a Weekend!!

Wow, what a weekend!
We started our weekend off on Friday when Aunt Kimmy came down to babysit so that Chris and I could go to our good friend Petrina's wedding. It was a fun night out for us! We got to get all dressed up and look extra nice for a change!
Petrina and Mike looked so great and we were honored to be a part of their special day! It was so beautiful out for them!
On top of that, I was able to be with my best friends which comes few and far between these days since Veronica lives in Denver! There were lots of smiles and laughter!
On Saturday morning, Colin, Aunt Kimmy and I left for Virginia Beach to watch my dad (Colin's Grandad) and Uncle Timmy run in the Shamrock Marathon. Unfortunately, Chris wasn't able to come with us because he had a lot of work to do (thanks Chris for being so willing to let us go and be away from us!). It was Colin's 11 month birthday! [gasp!!!] In 1 short month, Colin will already be a year old!
So, we loaded up the car...Colin helped by making sure his backpack got in the car.
Along the way, we stopped and picked up Uncle Pat!
After a few hours, we needed to stop to take a break, so we took in the fresh air at the picnic tables. Colin was so happy to get outside!
It took MUCH longer than expected...Colin was such a trooper, but believe me, he was SO HAPPY to be at the hotel, just like we all were.

Nana and Grandad came to our hotel for a little bit and then it was lights out for all of us. Colin had some trouble falling asleep, but you would have never known at 5:30am when he was wide awake...and happy! (We had to get up that early anyway)

Colin got ready with his "Future marathon runner" t-shirt in support of Grandad and Uncle Timmy. And wouldn't you know, we got to their hotel just in time to see the sun rise! It was so beautiful!

Mommy and Colin got a self-portrait together (even though Colin looks like he is so thrilled!)

The runners posed together... and then all the "kiddies"...
We walked down to the start with Uncle Timmy and Grandad and sent our love as they started...In between watching them run and the finish, we filled our time with lots of stuff! Hanging out on the balcony...

"Picking" beautiful flowers...

Watching "chicks" go by...

...and relaxing on the beach.Uncle Timmy finished 26.2 miles in 4 hours and 9 minutes (without walking!) and Grandad ran 22 miles before he started not feeling well (dehydration) and was unable to finish. We are so proud of both of them!! Grandad was very disappointed, but we all know that things don't always go as we plan. There is always next time! We love you both!

Sunday was also 3-21 or World Down Syndrome Day! This day was started to celebrate those who have an extra chromosome! We love Colin for all that he has brought to our lives!

Friday, March 19, 2010

Oh "Croup"!

Well, Colin has his 1st ever bout of croup...He started with a cough the other day but by this morning it had progressed to that "barking seal" kind of noise. I wasn't even thinking about it when we checked in with the doctor this morning and then after she said it I remembered how people describe croup.

For the most part, he is ok...no fever or runny nose (knock on wood), so hopefully it stays that way (hope being the key word!).
He was still a trooper through his PT session though and a ham as always!

Thursday, March 18, 2010

...through rose colored glasses...

Chris said to me yesterday that that he must be looking through rose colored glasses because when he looks at Colin he doesn't see Down Syndrome.

Colin is just Colin...he is our son that we love so much. We don't look at him and see the Down Syndrome, we see our little boy.

Which makes me think...we have come so far since Colin was born. I can remember days prior to his diagnosis was confirmed of looking to see what features might define the DS (even though I just knew), and afterwards, of worrying when we were out in public if people looked at him and saw it, of figuring out how to tell people (especially when complete strangers commented on how cute he was), or worrying about what the future would hold for him.

Believe me, we still have our moments...in fact, I just had one of them today, but they are not as bad as they used to be.

When I dropped Colin off at school today I just looked around at the kids that are around Colin's age, turning 1 or almost there as well and how mobile they are. They look months older than him and are all over the place. When you spend weeks and months working on skills in pieces (propping, hands and knees, supported sitting, etc.) so that eventually he will have the strength to put them all together, you realize how many people take for granted the ease in which some kids have in sitting, crawling, standing and walking.

And while I still have my moments, I know that Colin will do these things. I don't compare like I used to to see what he is or isn't doing, I don't worry the same way that I used to and instead, I have learned to have so much more patience than I once had.

But it is a journey that we are on, and with anything, there are always ups and downs and everything in between...

While catching up on some blog reading today, I came across this posted on Love. Hope. New Beginnings: The Miracle Factory and T-cubed: Three boys, Twins, and Trisomy 21. It was just what I needed to read...thank you! I am thankful for our little miracle...

Once upon a time, three angels were busily working in the miracle factory. They were responsible for wrapping up all the little miracles and sending them on their way. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped it with a delivery date and away it would go to the parents who eagerly awaited its arrival. Things usually ran pretty smoothly. One day, however, down the conveyer belt came a little miracle that made the angels pause.

"Oh my," said the first angel "this one's uhm...well.. .different. "

"Yes, he is unique" said the second angel.

"Well I think he is quite special," said the first angel "but I don't think he will quite fit our standard wrapping procedures."

And the second angel added, "And we know he's special, but will everyone else?"

"Not a problem," said the third angel "obviously a special miracle deserves extra special wrapping; and of course we'll send him off with our most heartfelt blessings. Then everyone will see how special he is."

"What a wonderful idea!" replied the others.

So they searched the shelves high and low for their finest paper, and their most delicate ribbons. When they were done, they stood back and admired their work. "Beautiful!" thay all agreed.

"Now for our blessings," said the third angel "for it is time for him to go." "I will bless him with innocence and happiness," said the first angel.

"And I will bless him with strength to face the many challenges that lie ahead" said the second angel.

"And I will bless him with an inner beauty that will shine on all who look upon him" said the third angel.

Before sending him off the third angel, who was very wise, gently tucked a note inside.And it said:

Dear Parents, Today you have received a very special gift. It may not be what you were expecting, and you may be disappointed, angry and hurt. But please know that he comes with many blessings, and, while there may be pain, he will bring you much joy. He will take you in a very difficult journey, but you will meet many wonderful people. He will teach you patience and understanding and make you reach deep inside yourselves to find a source of strength and faith you never knew you had. He will enrich your lives, and will touch the hearts of all who meet him. He may be fragile, but he has great inner strength. So please handle him with care, give him lots of attention, shower him with hugs and kisses, love him with all your heart, and he will blossom before your eyes. His spirit will shine like the brightest star for all to see, and you will know that you are truly blessed.

Author Unknown

Wednesday, March 17, 2010

Happy St. Patrick's Day Part II

Colin had a great day today (after he stopped crying when Mommy left him)! He got to try lots of different "green" foods including honey dew which we have never tried! I'm not sure how well that went, but hey, at least he tried.

Colin got a special card in the mail from his Aunt Natalia! It was a St. Pat's card just for him!

He was so excited to read it!

He read her sweet message just for him...

...but then of course wanted to eat it.
Thanks Aunt Natalia! xoxoxo

Happy St. Patrick's Day!!

Colin wishes everyone a Happy St. Pat's day!! He truly is Mom's lucky charm!

Colin is having a party at school today and was supposed to bring the green jello...little did I know (when I went to the store THIS morning) that they do not sell green jello pre-packaged! Ooops! So, we bought RED jello...not very St. Pat's ish...and I improvised and also bought mint chocolate chip ice cream. Fortunately, there will be LOTS of other green items for Colin to try later.

Oh, and today was the 1st time THIS has every happened...Colin cried because I left! Now, developmentally that's great, but it is not great on Mommy's heart!

Hope everyone has a lucky day!!

Monday, March 15, 2010

Proceed with Caution

One thing that we learned from Colin pretty early on was that when he didn't like something, doing the "raspberries" was his way of showing it.

You can imagine our frustration when every. single. food. that Colin tried and didn't like, he would do the raspberries to spit them out. We went through a period where every single meal was spent cleaning up Colin, the high chair, ourselves, and the surrounding area with food that Colin didn't like.

We tried everything...mixing foods with applesauce, trying adult food mixed up in the food processor, letting him play with food...anything to get our little boy to eat. He slowly started to get past the flavors and then we tried transitioning into foods that had some "chunk" to it. That started the raspberries up again...yikes! We were/have been frustrated!

We are tiptoeing very quietly around this issue, but Colin is starting to eat foods with chunk! The raspberries have been pretty dormant lately [gasp! I said it!] and we are very happy about this. I have noticed that if Colin eats a smooth food with the same kind of chunk, he usually eats it without complaint. Tonight, I tried a food that had different types of veggie chunks in it and he wasn't very happy with it. I have been chopping up different fruits and mixing them in with his fruit "snack" at school and he is doing so much better! It's a slow process, but we are getting there!

One thing that Colin was also not interested in for a long time was using a straw. We kept trying, and had even given it a break for awhile, but Colin just wasn't interested. We have noticed that Colin has been very interested in our glasses when we are drinking milk with dinner. We have occassionally been letting him try it and he loves it. One day I broke out the honey bear cup again and with only squeezing the belly once for him, he started sucking up the straw! He still hasn't coordinated sucking up the milk and then swallowing it, but one step at a time! We are so proud of Colin!

Parents Photo Faves

Vote for Colin as a weekly winner in the Parents' Cute Kid contest! Click on this link to check him out: Parents Photo Faves

Special Olympics Guest Blog Entry

After the Polar Bear Plunge was over, the Special Olympics was looking for people who were interested in writing a guest entry for their blog (Let me Win. But if I cannot win, let me be brave in the attempt). Of course I was interested!! In fact, I was honored! They wanted to get different stories regarding the plunge day...first time? 15th time? what did you think?

If you are interested in viewing my guest blog entry for CAT Crew, please click here!

Special thanks to the Special Olympics for allowing us to participate!

Saturday, March 13, 2010

Thank You!!

I just wanted to give Adrienne @ Our Unexpected Journey a shout out of thanks for helping me with Colin's blog makeover! She created my new header for me! Thank you to all of my fellow bloggers who also made very helpful suggestions for changing the background...I love the new look! Thank you!!

Friday, March 12, 2010

THIS is what YOU are missing Meanies!!

To the people out there that would do something so horrible by defaming posters that show our children in such a positive light...

THIS is what you are missing in life! Having a child that loves life, is happy and LOVES his finger paints!!
...you do what you need to do to be happy (but please don't use our children for your own horrible what you THINK is fun), and I will continue loving and being happy in my own life with this handsome little boy.

Thanks Katie @ the Growing Tree for sending this GREAT picture!! You guys are awesome!

Thursday, March 11, 2010

Mean, Horrible, Sad, Etc.

{sigh}

I received this email today from the National Down Syndrome Congress...I can not find the words to say exactly what I am feeling right now, but I'm sure the email will explain it well enough...

Dear Friend,

It is my unfortunate responsibility to advise you that the NDSC More Alike poster gallery has been raided by people who have been modifying the posters in an unsavory manner and reposting them on an internet blog. We believe that the person who started this unwarranted attack may have been someone directed to the site to vote for a friend's poster. If possible, we will identify that person and hold them accountable for their actions. The NDSC has requested that the site operator take the offensive material off line, but we cannot say at this time whether they will comply. We are investigating legal options and will continue to monitor the situation.

Unfortunately, there is no technical way to prevent this sort of image theft other than to not post it in the first place. That, of course, is exactly opposite of what we try to accomplish with our information and advocacy site. Nonetheless, we have taken down the poster gallery until this situation can be resolved. Once that occurs we will notify you. If you would like to have your poster removed from the gallery, please let us know and we will take care of it as quickly as possible.

Please accept our deepest regrets over this situation. Sadly, there are still mean people in the world. Sincerely,

David TollesonExecutive Director
National Down Syndrome Congress

Autographed Football Winner!

I was fortunate that my school district was very supportive of my family and I as we set out to raise money for the Special Olympics' through the Polar Bear Plunge. The week leading up to the original plunge date, they allowed me to sell pencils in the cafeteria for a chance to win the autographed Kerry Rhodes Jets' football that was very kindly donated to Colin and our efforts.

We have a class full of wonderful students who call themselves "The Gang" who have a wide range of abilities that helped me that week man the table in the cafeteria. I was honored that they were gracious enough to help and it allowed me a chance to get to know these wonderful students better, who have all participated in the Special Olympics.

Aside from the 2 days that we were out of school due to snow, we sat at the table during all lunch periods and sold the pencils. At the table, I had a picture of the autographed football, and a picture of Colin with some information about him and having Down Syndrome, as well as about the plunge. Many of the students that I know well were my "PR" crew and helped to get a lot of the students interested in purchasing a chance.

At the same time, our good friend Meredith did the same thing in the middle school and actually sold double the amount that I did! (Middle school students are much more interested in buying cool pencils than high school students are!) We were able to raise over $200 in just 3 days and at the warming up party, a name was selected....

The winner was an 8th grade student from our middle school! He was very excited to win and I was very proud to be part of such a supportive district. Thank you everyone!
Please follow this link to see the 8th grade winner on the districts' website!