Tuesday, June 30, 2009

Great Day!

We had a great day with Colin today!

First, he had his first session with his developmental therapist and we loved her! She has a great personality and you could just tell that she loved working with Colin. She has 3 kids of her own, with one on the way, and she could relate on the parent end because one of her childred needed early intervention as well. It seems that her therapy mostly involves playing with Colin with different toys that required him to track them with his eyes and she was also trying to get him to reach out for the toys. He was showing her how he can reach and grab onto different objects. She sung to him at different times and used a puppet book for Old McDonald that I loved!! My goal is to try and find that book! He was very attentive to her throughout the first half hour and unfortunately he was really tired for the 2nd half and started getting pretty fussy.

For the last half hour she just talked to us casually about different things. I've been very happy and very encouraged so far that we feel really comfortable with both therapists and that Colin has been very comfortable as well. I think it's really important for both Colin and Chris and I to feel that comfortable with them since we will be spending a lot of time with them over the next few years.

Later in the day Colin had his 2 month checkup and shots. He now weighs 9 lbs. 10 oz. and is 23 and a 1/4 inches long! Dr. Uma was so impressed with his weight and height gains that she took him off of the Neosure formula (higher calorie formula) and said that we can go back to normal formula again! Colin hasn't been on normal formula since the 1st 2 days in the hospital!

She was very happy with how alert and active he was while he was there and she took the time to answer all of my questions regarding different things such as reflux (she felt it was very minor and didn't require any medicinal interventions but suggested putting a pillow under his mattress to elevate it to a 45 degree angle), whether or not I should follow up with an ear nose and throat (ENT) doctor (not needed at this time since he is not having any problems) and the coloring of his skin when he is cold (normal). I told her about our visit to the Jersey Shore ITAP program and about his therapies so far and she was very happy to hear how great he was doing (plus she could see it herself).

She had another doctor in the office with her today and he also did a full evaluation of Colin; he was suprised to hear that Colin had Nondisjunction trisomy 21 (where there are 3 chromosomes instead of 2 in the 21st location) as compared to Mosaicism (only some cells in the body have 3 chromosomes instead of 2) because he felt he had minimal physical traits and was surprised to see how active and alert he was during the evaluation. Dr. Uma had me show this doctor the video I have on my phone of Colin rolling over at 4 weeks old because she still couldnt' get over how he is doing that already.

She said that he is really going to be all of our special baby. I love that she wants to take ownership as well because she has been so wonderful to the 3 of us and has been there since the very beginning. She was there at the delivery and has taken the time through this whole process to really sit down and discuss everything with us. Every time we are there she spends the last 5 minutes of the visit just holding Colin and really talking to him. She was disappointed she didn't get a smile from him today so hopefully next time! All of the books I have read say that you should have a doctor you really trust and we couldn't have asked for a better pediatrician.

Finally, Colin didn't even flinch when he got his 2 vaccinations today (one in each thigh). He was such a strong little boy...but does that surprise you?

Sunday, June 28, 2009

Busy Weekend

Colin had a busy weekend!

First, he was there to support his mommy as I ran in the "Save Barnegat Bay 5 mile race in Lavallette on Saturday. He was also cheering on his Grandad, Uncle Pat, and Kristine! It was my goal after having Colin to be able to finish that race, but instead, I was extremely motivated over the past 5 weeks and got myself to within 2 minutes of my time last year when I was in great shape. The road to getting back in shape hasn't been easy, but I always keep Colin in mind when running. He was there on the sidelines in his "mommy rules" shirt to cheer me on and make me smile!


The rest of the weekend Colin spent at the beach. It was a little windy, so he wasn't exactly the happiest, but he did love putting on his new beach wear! Once the wind dies down I think Colin will be as happy as his mommy and daddy on the beach.

Wednesday, June 24, 2009

Physical Therapy

Colin had his 1st physical therapy session today and it went really well. The therapist spent almost 2 hours with us (even though she was only supposed to be there an hour! oops!) and she gave us a lot of great activities to work on with Colin. We felt pretty good because a lot of the activities she suggested are ones that we have already been doing with him, but she gave us a lot of modifications to the activities specific to his strengths and weaknesses. I have taken some pictures of the different activities for you to see so you get an idea what we will be working on with him.

We really liked the therapist and in a "small world" situation I used to wait on her at the bagel shop years ago in Lavallette!

Here are some of the activities we will be doing with Colin:

  • Tummy Time with Towl Roll: In this position, we will be using a rolled up towel propped up under Colin's chest so that his elbows are on the ground. This works on head and neck control.
  • Tummy Time with Towel Roll and Toys: This is the same position as above, however, we use toys in Colin's sight line so that he starts to reach for them as well as to move them so that he tracks them with his eyes while he is holding his head up. This works on head and neck control as well as focusing and tracking objects at the same time.


  • Side-Lying: In this position, we use something propped behind Colin's back so that he is able to clasp his hands together and hold different toys. It is also good for his hips so that his leg drops over.
  • Towel Roll Under Head: In this position, we use the towel roll under Colin's head so that he looks towards objects on his chest and starts to bring his hands towards his midline.



  • Towel Roll Under Butt: We use the towel roll in this position to slightly raise up Colin's lower body so that he starts to bring his legs towards his middle as well as to use his legs to reach toys dangling above him (when using the "monkey gym").

These are just a few of the main activities we can work on with Colin. She also suggested that while Colin is on his stomach or back, we should take time occassionally to stabilize his hips so that he is not able to use his legs as much. Because his legs are so active and strong, it can sometimes cause him to use his upper body less. It's interesting to see that when we stabilize his hips, he is able to lift and hold his head for much longer at a time.

The PT stressed that overall he is doing really well; however, he has weaknesses as well with head and neck control and these activities are designed to improve upon that. Colin was very social with her and was smiling and interacting with her while she was here.

Sunday, June 21, 2009

Friends

"Good company on a journey makes the way seem shorter."

This was the quote that I used in the yearbook my senior year of high school and has become ever more true as the years have gone by. Chris, Colin, and I have been so lucky to have the family and friends that we do in our lives because you all have provided us so much love and support through our journeys both separate and as a family.

Colin has been lucky to have such good friends already (he had them before he was even born!)...Here is a video of his great friend Liam singing a song to him...


video

Happy Father's Day!

Colin has a message to all of the fathers out there, especially his own Daddy, Grandad, and Grandpa...


video

Saturday, June 20, 2009

Happy Birthday Colin!!

Colin is 2 months old today! Happy Birthday Colin!

It's amazing to me how fast 2 months go by (it's true when everyone says that time flies by with kids!) and while I was holding my beautiful little boy tonight (while he was smiling at me!) I was thinking about how much has happened in 2 months time.

I went into labor, I delivered Colin, we found out he was being tested for Down Syndrome, we went home with a newborn, we found out he had Down Syndrome, we started early intervention and the infant toddler assessment program, we had numerous doctors appointments, we all went to a wedding, visited with many friends and family, watched some major accomplishments (lifting his head, rolling over, smiling, sleeping through the night, etc.), and fell in love with a beautiful little boy.

We've had our down moments, but we've had so many more happy and proud moments...

Happy 2 month birthday Colin, we love you so much!!! xoxoxoxoxo

Wednesday, June 17, 2009

"The Climb"

I felt this song and video are very fitting for us and Colin right now. The song came on my ipod while I was running the other day and made me realize that it's not how fast he accomplishes tasks, it's about the fact that he will accomplish them. It's about "the climb", not necessarily about the end result...

The Climb - Miley Cyrus - Lyrics On Screen

Infant Toddler Assessment Program

Yesterday we brought Colin to Jersey Shore Medical Center to the Infant Toddler Assessment Program (ITAP) in their Children's ward. This program works similarly to the early intervention program, however, it involves a developmental pediatrician who will evaluate Colin on a regular basis to ensure he is developing on "track".

First, we brought Colin into a room where a team of therapists put him onto the floor to check and see how he moves and lifts his head when on his stomach. They also used toys with sound to see how well he followed the sounds, moved the objects to see if he tracked them, and also evaluated his mouth. They asked a lot of questions about things that only Chris and I would know regarding what Colin does at home including smiling, noises he makes, things he does while playing, etc.

Next, Colin was brought into a different room where the nurse asked more questions and also took some basic measurements. Colin now weighs 9 lbs. 7 oz and was 22 inches long! He has gained more than an ounce a day since his last checkup which is right on track for him. She mapped out his measurements onto two different charts, one for standard children and one for boys with Down Syndrome. He falls into lower percentiles on the standard chart, however, that's because his weight is still small for his age. On a comparible chart for him, he falls in a much higher range so we were very happy about that.

Finally, the developmental pediatrician came in to talk to us and perform her own evaluation. Because Colin is still at a very young age, there is not much to look for at this point besides his muscle tone. Everyone that evaluated him mentioned that he did have lower muscle tone, however, he is strong in some areas. Most babies at this age have low muscle tone anyway, so we just need to continue to work with him on tummy time and in other activities to improve his strength.

Early intervention had recommended physical therapy two times a month, however, the developmental pediatrician felt that we should be doing it once a week to make sure he really continues to build on his strength. At this rate, Colin is going to be lifting dumbbells before he turns one!

Until 2 years of age, Colin will be evaluated by the developmental pediatrician every 3 months just to make sure he is staying on track. I think it was nice for us to get a different perspective on his disability from a developmental pediatrician. They are all very nice people and overall our experience was a very good one.

Monday, June 15, 2009

Smiles

Colin is starting to smile more now, especially when he talks to his mommy and daddy. He is starting to smile in response to talking, laughing, when reading to him, and when he hasn't been with one of us in awhile.

The other night while daddy was away, Colin and I were reading a book together and the whole time, Colin was just staring at me as I read. Every once in awhile he had a big smile on his face. It was one of those moments that completely melt my heart. It's amazing how one smile from your child can light up your world...

In a thumb sucking update: Colin will occassionally get his thumb in his mouth and suck once or twice, but hasn't quite gotten the hang of it yet. It's still funny to watch as he works on his coordination because sometimes he will hit himself in the forehead, his nose, either side of his mouth, but never really make it to his mouth. Hopefully we'll catch it when he does get the hang of it...and then let's hope it doesn't become much of an addiction!

Saturday, June 13, 2009

Video of Soccer Balls

I had posted a little while back about the rattles that we had gotten for Colin's ankles that were soccer balls. I was unable to post the video then, so I am putting it up here now for you to see :) He loves kicking his legs!


video

Thursday, June 11, 2009

Attempts at Thumb Sucking!

I finally got on video Colin trying to suck his thumb! I'm very excited because I want you all to see the "work in progress" as he tries to learn how to put his thumb to his mouth. It's quite a discovery process and a lot of fun to watch! The video is about 5 minutes long because I haven't quite got into video editing yet, but make sure you watch at least halfway through to see the attempts at thumb sucking...

...don't mind me talking in the background...I'm on the phone with Chris telling him that I got it on video...


video

My Story

Finding out your child has Down Syndrome certainly wasn't easy, but over time, we are starting to learn that despite the diagnosis, anything is possible. Colin is proving to us what a strong little boy he is and is already going above and beyond in rolling over, lifting his head, and just generally being so strong. He is starting to grasp at toys and understand that he is holding them and is now starting to explore the toys by attempting to put them in his mouth. He is also starting to really focus on the toys and trying to pick them up after seeing them. We are so proud as he starts to accomplish these tasks and I can just feel my heart swell with pride when I see him start to accomplish a new skill.

...this diagnosis may not have been something we asked for, but we are starting to see a whole world of possiblities for Colin.

I was reminded of this even more when I was on the National Down Syndrome Society website today. They have started a campaign called "My Great Story". They are highlighting stories about people living with Down Syndrome and all the things they have accomplished and continue to accomplish in their lives.

Sara Wolff has taught me that Down Syndrome isn't going to be something that holds you back. She attributes where she is at to parents who always encouraged and motivated her, and were always there to support her along the way. A quote from her story reads: "I don’t think of myself as having “DOWN” syndrome but “UP” syndrome because I am an upbeat and positive person. I have been raised with the motto “Never” say “Never” and the words “I can’t” don’t exist."

I know that with the love and support Chris and I will provide Colin...he will accomplish anything he puts his mind to. We already see that every day with the many things he has accomplished already.

As Sara also said, "I encourage all individuals with Down syndrome to share their story. We all have “A Great Story” to tell because we are all unique individuals who should be proud of who we are."

We are so proud of Colin because of the unique and special little boy that he is...

Comments

I have heard from several people that they have tried commenting on the blog and have not been able to do so. I just changed some settings and I think I may have fixed the problem...so please try again!

Wednesday, June 10, 2009

Winnie the Pooh Mobile

Colin loves laying in his crib watching Pooh, Piglet, Eyore and Tigger on his mobile. This is a video of him watching them circling and listening to the music. You can also find him doing the same thing with ceiling fans as well...

video

First BBQ


Colin went to his first BBQ on Sunday! He was such a good boy and loved being held by his friends. We brought his pack n' play along knowing that he enjoys being 'free' a lot of the time and he just played in there a lot of the day.

Saturday, June 6, 2009

Sleepy Boy


In sleeping news: Colin went to bed at 10 pm last night and didn't get up until 6:30 am! Unfortunately, I fear that the same will not occur tonight...but I can only hope!

Colin's Plan

We had our final "initial" early intervention meeting yesterday with our case manager and social worker. They came to the house and sat down with us to discuss any changes that may have occurred since their evaluation. The social worker/therapist then wrote goals for different areas of development including gross motor, fine motor, communication, etc. These goals included suggestions on activities we could do with Colin in order to make sure he is developing in these areas.

At the end of the meeting, the therapist made suggestions of what she thinks Colin needs at this time which includes physical therapy and developmental therapy two times a month each for an hour per session. These therapies don't necessarily mean that he is lacking at this time, but they are specifically for him to assist with development and to make sure he stays on track. I am looking forward to these therapies to learn new ways to help Colin and make sure that he can do everything he is supposed to at this time.

Colin's goals and accomplishments will be reevaluated in 6 months and changes will be made for the following 6 months. In addition, we have scheduled an appointment for Colin at Jersey Shore's Children's Hospital for evaluation with a developmental pediatrician. The program is similar to early intervention, but we have the benefit of a thorough evaluation by a developmental pediatrician that will continue to monitor Colin. They also make suggestions, but it often works with the suggestions that are made through early intervention.

Colin was so alert and active when they were here and showed to them how well he is doing! The therapist said to him that she thought he was going be "causing trouble" because of all that he is doing at this time! We love hearing that!

This was Colin right before they were at the house showing how well he can hold his head up!

Thursday, June 4, 2009

Tummy Time!


We've been spending a couple of "play times" a day working on tummy time with Colin. He can hold his head up very well now and is able to look around while holding his head up. It depends on his mood (he's got quite a personality now!) as to how long he will hold it up for and how many times he will do it.
Here is Colin during "tummy time" and looking around while holding his head up.

Wednesday, June 3, 2009

To make you smile...

I just wanted to put a smile on your face today the way Colin did for his mommy, daddy, and Aunt Kimmy...


He's a very happy baby :) One of the things he loves to do (which is he doing right here) is to put his hands up and say "yaaay!" It always puts a smile on his face like he is right here...

Tuesday, June 2, 2009

Happy Birthday!!

Colin was 6 weeks old yesterday!! It's amazing how fast that time went by and how many great memories we have with Colin. He grows and changes so much every day!

I went back to work today...it's amazing how fast 6 weeks will go by, but it wasn't so bad. He was in great hands and it was nice to see some of my friends at work. We only have a little less than 3 weeks left and then we will have the whole summer ahead of us!!

Monday, June 1, 2009

Daddy's Home!


Colin was so excited yesterday when his daddy came home! Unfortunately, he was gone with work for 5 days and Colin missed him so much that the first night he was gone, he didn't sleep through the night!


Colin and his daddy picked up right where they left off snuggling on the couch...


Soccer Player

One of the things that was recommended to us by the physical therapist of the early intervention program was to get some of the wrist and ankle rattles for Colin so that the noise stimulates awareness of his limbs. For the spot on his ankles, the noise of the rattle is supposed to help them become aware of them so that he starts to reach and grasp for his feet. I found ankle rattles that are soccer balls! Since he already kicks his legs so much, they are perfect for him and we can get him ready for the sport his mommy and daddy would like him to try out.

It's an interesting concept and I can already see how it works because I've seen Colin bending his knees up and putting his hands on his knees.

I am having technical difficulties at the moment in uploading the video to my computer, but as soon as I get it up and running, I will add it to this post.

In another update, Colin is still rolling over regularly and I think he does it now because he doesn't like spending too much time on his tummy. If we put him on his tummy when he his happy, he will spend time lifting his head and looking around. This morning we even saw him get on his knees as though he was going to start crawling! He does a pseudo-crawl in the form of an army crawl. He is always moving!