Happy (Belated) Birthday!!

Happy (Belated) Birthday Uncle Timmy!! (January 26th). So sorry we forgot to give you a shout out on your day, but hoping you had a great day!! We love you and miss you all the way down there in NC and can't wait to see you again soon!! :)

xoxoxoxoxoxo

So AMAZING...

Recently in the news, came this article about new non-invasive testing available that will give mothers the opportunity to know whether or not their baby has Down Syndrome. This new information raises a question in the article "will babies with Down Syndrome slowly disappear?". I have avoided this topic and avoided reading the article until just now (which I still chose not to read the whole thing) because it disturbs me for so many reasons. I think it's pretty clear where I stand on this issue since we were presented with possible information during my pregnancy with Colin and we chose not to do any invasive testing to find out "for sure". Although we had a hard time with the information when first provided with it and at birth, we had decided we would never choose our fears over our baby that we had created.

It saddens me that our scientific research is leading us in a direction that is allowing us to create the perfect child by potentially removing a fetus that society would consider "imperfect". It's no secret that we are faced with daily challenges with Colin because of his having Down Syndrome, but the love and fullness I feel because of him outweighs any of these challenges. In fact, just tonight, when I was feeling a little "down" after having a rough day, Colin crawled over and kissed my cheek. I can assure you that he brightened numerous days in Shoprite today when he greeted and waved at many people there...please tell me how this life isn't a life worth living. Sure he is faced with challenges, but don't we all have some kind of burden or challenge that we struggle with on a regular basis?

My friend Patti at A Perfect Lily has been writing some posts on this issue and rallied together to the troops to put a beautiful video together. You can read the post in its entirety here which she appropriately titled "worthy of life" but I wanted to share this excerpt which moved me to tears...

"Our children are not suffering.

Our children are not a burden.

Our children are worthy of life and worthy of our love, and we are forever thankful for the incredible joy we know every single day....because of them. "

She created this video that beautifully demonstrates the worthiness of our children's lives...because they are all "so amazing"....Thanks Patti!

Since my format of the blog cuts off half of the video, I suggest checking it out on Patti's blog to see it in it's entiretly...If the video does not work the first time, please hit the refresh button...

Make video montages at www.OneTrueMedia.com

Up and Down, High and Low

I'm sure it comes as no surprise to any parent out there that every day brings its own set of challenges when it comes to raising a child. You don't have to have a child with special needs to know that. But, when you do have a child that has a unique set of challenges, it can seem a bit overwhelming at times.

However, the good thing is that there is always a bright spot in a day and sometimes you have to look harder than others for it. Of all the things that have been frustrating lately with feeding issues and a growing list for a toddler boy who is also teething (and just being a toddler boy), there have also been bright spots as well. For every thing that is frustrating in a day with Colin, there are plenty of other things that are exciting and rewarding.

Like this...



Crawling on hands and knees isn't something that Chris and I have stressed out about because Colin has slowly been getting there. He has taken a "crawl" here and there and his amount of crawls and "steps" have been increasing. We witnessed his most consecutive hands and knees crawling yet tonight and although we didn't get all of it on camera, we are completely excited nonetheless.

Our other bright spot is that Colin's communication has been increasing and it seems like every day he is making a new sound or "saying" a new word. Most of the words he says are ones that most people wouldn't recognize, but we have begun to realize what he associates certain sounds with and that "vocabulary" of sounds is always growing.

So yes, every day IS challenging and frustrating. But, every day IS a new day and every day has plenty of rewarding moments as well...sometimes you just have to look for them!

Dancin' Fool

This little boy LOVES to dance!! I can't wait until he can stand on his own two feet so that we can see what kind of moves he has then. Until then, this cuteness will certainly do...

Little Boy or Dog?

After styling Colin's mohawk today in the bathroom, I put him down on the floor real quick before heading to the grocery store so I could finish pulling my own hair back. I looked over and guess what he was doing?

...standing up at the toilet splashing in the water. I wish I had a camera in that moment because it was so funny!

CAT Crew Flapjack Fundraiser

For the 2nd year in a row, my sister in law Beth Tobin, organized an extremely successful fundraiser for Team CAT Crew at the Applebees in Hamilton, NJ. Almost all of the money raised from ticket sales goes directly to our fundraising efforts for the Special Olympics of NJ. It was so exciting to see all of the people come out and show their support in honor of Colin for such a wonderful cause. We were able to raise just over $1000 for team CAT Crew making our current total just about $15,000!! I am so grateful to Applebees for providing such a wonderful fundraiser for us. We couldn't ask for anything better! Thank you to all of the people involved from planning to running the event for making it so successful!!

The plunge is coming up in a month....if you are interested, please check out the link on the sidebar for more information on donating or joining Team CAT Crew!

* Special thanks to Jorie Gallagher for all of the pictures you will see below!! *

Click here to view these pictures larger

"Strike a Pose"

Aside from the fact that Colin is wearing Christmas pajamas in the first few pictures, do you start to see the common theme here?

...this boy loves his Mickey Mouse and will "strike a pose" when it's time to watch. He makes himself comfortable and gives his full attention for the 25 minutes that it's on. In fact, when it's time for me to leave for work in the morning, I have to pause the show to even remotely get a kiss from him. When it's paused, he gets pissy with me and I get the "half" kind of kiss like "ok mom, I'll give you one real quick, but you better un-pause that show!".

It IS cute though because when someone is holding the remote he makes this sound that is similar to "tsee", meaning "Mickey". Hey, at least the kid knows what he wants and asks for it right?

Feeding Help Part I

"A bend in the road is not the end in the road...unless you forget to make the turn."

- Author Unknown

I know most of you saw my post last week about being frustrated regarding some things, particularly feeding. As I expected, I have moved on from the "low" I was in and now am in research mode to try and figure this thing out (as we have been doing since the beginning, but pressing forward). I have gotten some great suggestions on reading materials that I have since ordered and my next step is to ask the opinion of the most "wise" out there, those with actual experience in this department. I have read on a lot of your blogs that at some point or other, you have had difficulties (or still are) with feeding and have things that worked best for you and your child. I realize that everything that works for your kids isn't going to work for mine, but hey, I am willing to try anything at this point.

I decided that I am going to come up with a few posts that address some specific issues just to see what kinds of ideas you may have. I would appreciate any suggestions you may have!

Feeding Issue #1: Obvious disdain for anything more solid than say, mush.

I am addressing this issue, although, it is ever so slightly improving. Colin seems to have interest in most things we eat in front of them to the point you can at least get it to his lips (slices of pizza, crackers, chips, pretzels, etc.). However, as soon as he feels something close by that is more firm than mush, he starts blowing raspberries and spitting like crazy. I realize that this is a texture issue and over time it should improve. Occassionally, he will take a cracker and put it in his mouth to take a bite (he loves biting these days with those sharp front teeth), but then spits everything out. I am sure this will eventually change to where he is willing to tolerate more things, but does anyone have any experience with a progression that may help this along?

Feeding Issue #2: Does not want anything other than yogurt milk or milk with ovaltine (but only at dinner).

Yep, he IS picky and that I know. Again, I realize this may be a texture issue because any "thin" liquids he is not interested in keeeping in his mouth. I have tried most juices out there as well as just plain ole' water, but all he does is spray them out. I put a question out there on facebook yesterday and have gotten some great responses in terms of liquids to try which I can't wait to attempt. I worry often about dehydration, but he does have regular wet diapers so I am sure he is getting enough. However, I am afraid of sticking to what is just "comfortable" and getting stuck somewhere that he will only ever drink one specific thing. We have also unintentionally programmed him to expect the yogurt milk in one cup with one straw and milk in another cup with another type of straw to a flaw. We did not have any cups left for the yogurt milk and he thought he was getting regular milk and refused. We actually had to change out the straws so that he would drink the yogurt milk. So, I am playing around with cup choices as well. I am accepting liquid suggestions as well!

So, as i started this post off with a quote, I know this is not the end of the road when it comes to feeding and we need to keep trudging along, but it IS our biggest challenge out there and is frustrating at times (ok, most of the time). However, as any good Mommy and Daddy would do, we just work hard to move forward.

Our Little Fish

Do you remember how I mentioned the first session of swim lessons was a disaster? Well, we have quickly come a long way and Colin loves being in the water. We had one bad session to start, but since then, we have had two sessions that Colin has greatly enjoyed. This past weekend Chris was unable to make it, so we don't have any pictures but I have a few short videos to show you from tonight. Next time around, it will be Daddy's turn to get in the water with Colin again (he bit the bullet the first week!).

* I am being brave...please don't mind my 8 month pregnant body in a bathing suit!! *

This is our happy little boy before getting into the pool. He saw the water and was excited! Although it's not exactly correct, he is signing water when he sees it! Also, it was pretty loud in the bubble again, but Colin did not seem to notice this time!

As promised, here are 3 videos from swim lessons tonight!

To Make You Giggle...

I just wanted to share two videos from the weekend.

This first video is of Colin getting stuck in the bench from his piano. I can tell you that this is not the first time this has happened, in fact, in may be the third or fourth. He likes knocking it over when he is not using it and then I guess he decides that he can crawl through the legs of the bench. However, this is usually what happens...



This second video is from today when Colin figured out that he could "tickle" daddy and get a good response...



I hope you all had a great and relaxing weekend!

* If any of you have any suggestions on reading material for children with DS who have feeding issues, texture issues, etc. I would appreciate any suggestions! I'm looking for some "help" in this department. Thanks! *

Isn't it ONEder-ful?

I remember a year ago when some blog friends started posting about a new little girl Nella that was born with Down Syndrome to Kelle Hampton and her husband. Kelle had written her feelings so expressively and with so much emotion that reminded me how I felt when Colin was born. It was amazing how someone could put so much emotion into words that felt like what I had experienced.

Just like all of us, Kelle and her family have grown to see the beauty in their little girl and have done something amazing with Nella's life journey...they started the ONEder fund in her honor. All of the proceeds from the ONEder fund go directly to the National Down Syndrome Society, an organization dedicated to the ..."value, acceptance, and inclusion of people with Down Syndrome.". In just four days, the Hampton family has raised over $50,000 for the NDSS! For more information on the ONEder fund, please visit Kelle Hampton's blog at Enjoying the Small Things . She is extremely talented with her words and her pictures and is doing something so great for Colin's community, so we thank you!

Kelle made a video to highlight this community of people and to raise awareness for her fund. I suggest grabbing some tissues before sitting down to watch! We are so proud to have Colin in this video!

Hanging in...

Just wanted to let you know we are hanging in there! I think Colin's been a little off this week related to either his tummy or his teeth, but we are surviving!

Thanks again for listening on my last post!

Purging

Ok, I'll admit it, I have been having a bit of a rough week this week when it comes to Colin and our challenges. I've been avoiding posting about it because I didn't want it to sound like I'm complaining, but the more I hold on to it, the more overwhelming it is. Just like purging your house of the "crap" you don't need, I need to purge myself of these feelings and get myself back on track.

You know what it is? I think we are just in a lull right now of developmental milestones with Colin. We had so many great things happening all at once and while he still does great things on a daily basis, the struggles and challenges are just glaring right at me.

Biggest struggle #1 (always has been and still is...): feeding. Yes, he still continues to come a long way from the days of not wanting any table food at all. However, our variety of things he likes seems to be shrinking and it's very challenging to bring anything new near his face. He is tightlipped to most things, still wants nothing to do with anything with a hard (0r semi-hard) texture (except for the chocolate chips in his mint ice cream which I am convinced he just swallows whole anyway), won't drink anything but dairy at this point (which isn't very good on a kid who has had a little bit of a stomach thing this week), will only self-feed pancakes, still doesn't seem to be chewing (just mushing and swallowing), and every meal is just hard for some reason or other.

The rest of the challenges are just things that I let bring me down, although I know he will eventually do them when he is ready. I know that. I've been there already and seen it happen.

Lots of things have been on my mind lately, are we doing enough, what should we do about the feeding, what if..., what if... and those thoughts can be consuming.

So I needed to do the next best thing....let it out. There, I said it. It's been a rough week and yes , I have struggled with some things. I know Colin will do these things when the time is right. I am proud of what he has accomplished so far. I am thankful for Colin's health, his progress, and his neverending love...

So I'll be back on track very shortly. Step #1 was letting it out (which feels better already). Step #2 is to continue to do what I do best, love my little boy. And step #3...just be happy and grateful for how far we have come.

Thanks for listening :)

Special Olympics' Polar Bear Plunge

In less than 2 months, family, friends, as well as Chris and I, are about to embark on a very *cold* journey as we participate in team CAT Crew's 2nd Special Olympics of NJ Polar Bear Plunge. In our 1st year participating, CAT Crew raised over $38,000 for for the Special Olympics of NJ. It was such a great experience and we were proud to be the 2nd best fundraising team there! To take a look back at our first year, click here.



We are just as excited to take the dip this year and have started our fundraising efforts. This is the letter that we sent out to friends, family and coworkers...

Hi Everyone!

It's that time of year again...time to jump in the Atlantic Ocean in February (*gasp*) for a wonderful cause! It's time for the Special Olympics' Polar Bear Plunge held in Seaside Heights, NJ on February 26, 2011! Last year, team CAT Crew raised over $38,000 in our first year ever in Colin's name.

As many of you know, our son Colin was diagnosed with Down Syndrome at birth. The polar bear plunge is our way of raising money in his honor for an organization that provides wonderful opportunities for children and adults with disabilities. The mission of the Special Olympics New Jersey is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.

Colin works so hard on a daily basis to achieve skills and tasks that come easily to other children. He shows us every day the potential we all possess to accomplish goals, all with a smile on his face. We couldn't be more proud than to be parents for the most loving and special little boy.

Although I will not be able to fully plunge this year (I'm not so sure Colin's little brother or sister will appreciate the dip very much!), I will still be showing my support up to my thighs. If you are interested, there are several ways you can show your support for Colin...

1. Join our team, CAT Crew! By clicking on this link, you can join CAT Crew and help us to raise funds for such a great cause and take a dip in the ocean in February!
- Click "Join our team"
- Agree to the waiver
- Fill out the page to officially join CAT Crew.

2. Donate to CAT Crew by donating through my special page. By clicking on this link, you can donate to my fundraising page to show your support for Colin. If you are not comfortable donating online, there is an option to print out a form that you can mail in.

3. Cheer on team CAT Crew as we support Colin in February!

Thank you for all of your support that you have shown us so far. Colin, Chris and I look forward to having you join us!

Love,
The Tobins
Chris, Kelli, and Colin

If you are interested in donating or joining CAT Crew, please use the links above...we would love to have your support!!

We hope one day, Colin will be a proud participant of the Special Olympics. For more information on the Special Olympics of NJ, please click here.

2011 Day 1 of Swim Lessons: Disaster

Colin had his first day of swim lessons yesterday for the new year. If you remember from last year on his 1st day , he had a great season of swim lessons. He loved being in the water and when we would get there, he would immediately get excited to get in the pool. This year? Complete and utter disaster.

Unfortunately, we weren't off to a great foot when we walked into the room (it's a bubble) and there was a high school swim team practicing in the pool next to the kiddie pool. All of the sounds echoing in there was way overstimulating (if it was overstimulating for me, I can only imagine what it was like for Colin) and Colin started getting really nervous and clingy. I could not put him down without him holding on for dear life. He seemed to calm down a little bit, and so when Chris tried to get in the pool with him, I had high hopes. I can't say he exactly cried the whole time (and definitely didn't scream), but he had this horrible scared looked on his face the entire time and would not let go of Chris.

For day one I have a couple of theories:
1. Way too overstimulating in there for a kid who is sensitive to really loud noises.
2. The pool was not as warm as it was last year (hence the shivering).
3. I kept comparing it to the bath tub (thinking he would love it because he loves the bath), and I realized that in the bath tub, he is touching the bottom, which must feel really secure. In the pool, not so much.
4. He's a whole year older, new sights and sounds...

So, although I was extremely disappointed (I cried...but there is more to that I will get into another time), I am sure it will get better with time. I just hope it's before the last session!

Happy Birthday Uncle Pat!

Happy Birthday Uncle Pat! I hope you have had a great day!! I love you! xoxoxoxx

Love, Colin

Proud Moment

I'm sure I've said this before but every. single. time. we get frustrated or upset about something that Colin is struggling to do, he comes through and starts to do it!

On Christmas Eve, Miss Kathy came over for PT since we weren't doing much in the morning and she was going to be traveling the following week. We started talking about Colin's improvements towards walking, and I was asking her how she thought it was going, since he really hasn't shown any signs of it other than his length of time that has increased for standing. She was hesitant at first thinking that I would be upset to hear a negative response, but I honestly take the good with the bad these days when it comes to development. I know he will one day when the time is right, but I still am curious to know what his progress is like. She said that since he wasn't making any "cruising" type motions or side stepping while standing, it was probably going to be awhile. I have been happy lately that Colin will attempt to pull to stand more and his length of time standing has increased, so I am certainly not focused or driven by walking just yet. It would be nice, believe me, but again...when the time is right.

Today, Chris was texting me during PT telling me what a great session Colin was having. Of course, I tend to get jealous in these moments, but being the great guy that he is, gets video and pictures for me. So, although this video is a bit long...check out our little boy rocking it and taking his first "side steps"!! I was so proud watching this video when I got home, and the cutest thing was, I was lying on the floor watching it on the camera and Colin came right over and proppped himself up next to me and was giggling and smiling at me. I guess he could tell from the tears in my eyes how happy I was! Look at the cute dancing as well!



I've made a few attempts to get Colin's new (and my favorite sign) on camera lately, but haven't gotten anything very good. Here is a short video of Colin 1st kissing his reflection and then saying "love you" with signing...



And finally, my typical toddler boy, playing with the toilet seat...

A Kicking Baby

I know I haven't talked much on here about this second pregnancy much, and I think a lot of it has to do with the fact that things are going relatively smoothly and there isn't much for us to worry about. I've been lucky to be healthy and so far, everything with the baby has been great as well.

One thing that has been on my mind a lot lately is a comment that I heard recently. I forget if someone told me directly, or if I read it somewhere, but I have heard that moms have noticed a difference between the "kicks" associated with a "typical" baby and those associated with a baby that has Down Syndrome. When I think back to my time being pregnant with Colin, I felt him moving all of the time. He would get me under the ribs, and I would see him pushing out in different areas of my stomach and since I didn't have anything else to compare it to, I thought he was kicking pretty strongly.

When asked how I feel this time around, there have been some differences to me. I have attributed them mostly to the idea that maybe I am having a girl this time, but it has made me start to wonder a little bit more. In the beginning this time, I was much more nauseas (never actually getting sick though thankfully), I feel that I am carrying differently, it took me longer to "look" pregnant, and I have commented more than once that I thought the movements of this baby were different.

Until I heard the comment recently, I never would have thought that the reason the movements were different were because this baby potentially does not have DS. However, the more this comment has been on my mind, I am starting to notice that the movements of this baby are more severe and are definitely stronger. This baby will often take my breath away by the strength of the kick, some movements are more painful (especially when it forces a lot of pressure to one area), and I feel as though they are larger movements. I am starting to wonder if maybe there is some truth to that statement...what about those of you, what kind of differences have you seen?

Chris and I just recently talked about what it would be like at birth if we found out this baby has DS. It's amazing what a little preparation and experience will do to ease one's mind at the thought process. The way we talked about it was so nonchalant and comfortable because we just know we would be fine. I will admit, I am curious to see what it is like to go through a baby's development that does not have challenges that hold it back, but that curiosity does not take away from the blessing this baby will be to us no matter what...

I guess we can only see what kind of gift God has in store for us this time around...just over 2 months to go!

"Typical"

Doesn't he look like such an angel here??

Well, this angel managed to swipe away his Little People nativity scene (do you see poor Joseph poking out from underneath the couch? Unfortunately, that's where baby Jesus and the rest of the gang are hiding.) and knock some of my Christmas ornaments off of the next shelf...

...knock over and push around his Little Tikes chair...

...knock over these 2 folding chairs that were hidden behind the door to the laundry room (oh, he found them because he wanted to shut the door) from yesterdays Holiday Open House that we had (don't worry, there were no children harmed in the knocking over of the chairs...fortunately)...

...knock over this tray table still set up from yesterday (although this did hit him, he didn't even react)...

...knock over his piano bench, after propping himself up on it (kneeling on the ground leaning his elbows on it so he could play the piano)...

...and completely empty his bin of balls, flip over his step stool, and climb up on the fireplace to read his books...

When it comes to some of these items, yes...we have learned our lesson as to what we can and can't leave out. However, deep down inside, I'm not upset about this destructiveness (especially because he was not harmed while participitating in the destructiveness) because guess what? Our little boy is more "typical" than not...

He is just like every other little toddler boy who likes to explore, try things out, and be mischievious...and it reminds me again that he is more alike, than different!