Watch out for the Kangaroo!
Saturday, October 31, 2009
We noticed lately in response to our waving, Colin is starting to wave back to us! We have especially noticed it when Colin sees us for the 1st time in awhile (like when we get home from work). It's so much fun! This is the best picture we have of this right now...
Another skill that we are SO happy about is Colin's new ability to lift his legs up, grab onto his feet, and sometimes pull his socks off all by himself! Miss K had us working on Colin pulling his socks off as a self-help skill, but these days, he is starting to get that on his own! This picture is a little hard to see, but I took it with my phone and further away because Colin is very aware when we take pictures now...
Colin is splashing in the tub! I have started to look into swim lessons for Colin because he really enjoys his bath time. He kicks and laughs at himself when he realizes that he made the water splash! I can't wait until he can sit up in the tub and really be able to play!
Lots of great things going on these days!
Sunday, October 25, 2009
Colin is so lucky (as is his mommy and daddy) to have such wonderful family and friends!
Colin was so happy today! We were so proud because he is working on trying to get his bottle into his mouth all by himself! He knows he wants it and he knows to put the nipple in his mouth by himself, but he can't quite lift it yet to get the formula out of it. He's trying hard though! He was very talkative all weekend, very smiley, and worked really hard on his exercise ball trying to lift himself up! I tried working with him on just sitting, but he is so forceful in extension that he pushes himself right over!
We are so proud of all the things he keeps trying to accomplish! We had to work on an art project today and he was picking up individual pieces of pasta! I would definitely call that a reach and grab (Miss D was asking if he does that on a regular basis now)!
Saturday, October 24, 2009
Here are all 3 kids after we got them dressed and prepared to take some pictures...
And then this is what happened when we tried to actually take a group picture...
We still had fun though! Colin enjoyed playing with his friends!!
Thursday, October 22, 2009
The first of all of these visits was his 6 month follow up with Miss D, the developmental therapist, which I explained in a previous post.
Yesterday, Miss K came for her session and also performed her evaluation. The evaluation actually went quicker than I expected and a lot of it was questioning Chris and I to inform her of certain things Colin is either doing or not doing (most of things Miss K witnesses during her sessions). On the 2 different assessments, Colin falls in the 4-6 month range because he is doing all but 1 skill in the 4 month category (changing a toy from hand to hand), most in the 5 month category and is starting to touch on some 6 month skills. His biggest weakness is his trunk musculature and as a result, isn't quite sitting yet.
This morning, we took Colin to the audiologist to follow up with his hearing test (we needed to follow up after his initial screening test at birth which he passed). After her initial questioning, she asked us if Colin had some congestion (which he does and was obvious when he coughed) and then gave us this look and said that she probably wouldn't get good results. Then she looked inside of his ear (noted his small canals) and also said that he had a decent amount of wax buildup. She performed the test and told us that Colin failed. Surprisingly I wasn't that upset because I know that Colin can hear (he responds to his name when called (especially when we are out of site), he will respond to toys that make noise, he becomes startled by loud noises, etc. When we were at our pediatrician's office today, she kind of scoffed at the failure because as soon as she looked in his ear and saw the wax she thought it was obvious that he would fail. So, we have to go back and have his hearing re-tested.
So, we were at the pediatrician's for Colin's 6 month check-up and he is weighing in at a whopping 14 lbs. 2 ounces (without clothes on and after he peed all over the table) and 24" long. She felt that his cough is getting better and is related to irritation of his bronchial tubes and is not concerned because he does not have any other symptoms (#1 being a fever). We discussed some things we will need to follow up with in the future, he got his ears cleaned of wax, 2 vaccines, and lots of loving from his favorite doctor.
Coming up in a little over a week we also have Colin's 6 month IFSP meeting to determine the services he may need over the next 6 months. I am pushing for an increase in physical therapy, developmental therapy and also a possible addition of speech therapy (not sure if I'm going to get that one). Colin is doing well, and I want to make sure he stays on that track, especially now that he is starting to really babble and make sounds. I would like to learn ways to increase this babble.
We are really working hard!
Tuesday, October 20, 2009
Monday, October 19, 2009
Sunday, October 18, 2009
Saturday, October 17, 2009
Just as importantly, you need to have a great relationship with your child's therapists...
We are extremely lucky to have such great relationships with Colin's developmental therapist as well as physical therapist. They are both excellent; they are extremely knowledgable in their fields AND they both are extremely caring when they are with him. As you have seen in some of my other posts, Colin works REALLY hard when he is in therapy. If he didn't have such caring therapists, I don't think we would have the positive outcomes that we do.
Today, Colin had his 6 month evaluation with his developmental therapist Miss D. We love her! We are lucky because she is coming from the experience of a therapist as well as a mother of a child with some special needs. Colin smiled for her immediately today which is so nice to see. Based on the scales she was using, Colin falls around 4 months of age developmentally. It was a little bit hard to hear that because overall we think he is doing really well. There are some things that he doesn't do as well which is why he couldn't be scored on those things right now. Miss D reminded us that we need to just focus on the fact that those are things we just need to work more on. We will have Colin's 6 month meeting in a few weeks and we will determine where we need to go from here. Miss D suggested increasing Developmental therapy to once a week, which is also what Miss K suggested for PT. They would like to do this not because they feel is lagging far behind, but to make sure he stays on target. I welcome those changes because it would make me feel better to know that Colin is getting 2 hours a week of structured activities geared towards his needs.
You know you have a great relationship when you can talk openly and candidly with someone. We are lucky to have the therapists we do!
Friday, October 16, 2009
I immediately had a great first impression of her because she came into the room we were waiting in, and sat down. She asked personal information about us and then gave her feelings on breast feeding versus formula and positives and negatives of both. She wasn't forcing us into any one direction but gave us the information and left it at that. She answered our questions and then gave her philosophy on vaccinations (spreads them out). She informed us that she is the head neonatologist at our hospital (which was a MAJOR plus) and told us that she would come and check in with Colin after he was born.
When I went into labor, the first 6 hours at the hospital went by pretty smoothly. After I received the epidural around noon, Colin's heartrate kept dropping and so the midwife in my group who was on call called one of my OBGYN doctors to be there and also called his pediatrician. Things happened very quickly from about 1-2:44 when he was born because they were very concerned. It got to the point where if he hadn't come out as quickly as he did, I would have had to have a c-section (I had already signed the paperwork for it). The pediatrician was there for his birth and she was the one who told us that she was testing him to confirm her suspicions of Trisomy 21.
From that moment on, she took care of Colin AND Chris and I. She spent lots of time checking him out in the Special Care Nursery and since that day, we have seen her at LEAST once a month (sometimes more, like early on). We are NEVER rushed, and she will sit and talk to just Colin every visit. You can tell she truly cares about her patients.
We are so lucky to have her as Colin's pediatrician as we know he is receiving the best care! Chris took Colin in today after I spoke with her. Colin's school called today and for the second day in a row, informed us that he was kind of lethargic and lazy and wasn't eating as much formula. Being the worry wart that I am, I called the doctor (I just fear the ear infections and such that we know Colin is more prone to having) and she told us to bring him in. Fortunately, he just has a little bit of congestion and so she prescribed a nebulizer to clear everything out.
Thursday, October 15, 2009
Thanks you all of you fellow bloggers out there for putting the information up! I'm glad Colin is part of it!
Wednesday, October 14, 2009
He was able to put the nipple in his mouth, but didn't go as far as lifting the bottle up to get the formula out of it. Baby steps!
Miss K has us working on another self-help skill...undressing himself! We slide his socks halfway off and then put his feet in reach and he will grasp the sock and pull it off! We cheer very loudly for him!
Tuesday, October 13, 2009
It's amazing to me at how in just under 6 months of time, so much has changed. Despite the fact Chris and I were waiting to have the test results confirmed that Colin had Down Syndrome, we were the happiest parents. We were so in love with our little boy and couldn't wait to bring him home with us. Fortunately, we only had to wait one extra day.
I can vividy remember very gently putting on this outfit for Colin in his bassinet for our trip home. We were so thankful for all of the love and care Colin's nurses gave him, and us, but we were ready to go home. I remember feeling as though I couldn't wait to get home to take care of my baby without someone always watching over my shoulder. In the beginning, it was nice, because we learned so much about how to care for Colin that we wouldn't have gotten if Colin was "healthy". We watched a nurse bathe him for the first time, gave us techniques for feeding, how to keep him warm by swaddling him, etc. We were so happy to have the extra attention that I cried when we left!
...There was nothing like being home with our baby...
Monday, October 12, 2009
Sunday, October 11, 2009
We love you!
Saturday, October 10, 2009
In other updates...here are some of the new exercises Colin is doing! In this first picture, Colin is in the middle of doing one of his exercises where we lay him on the ball, and he lifts himself up to a sitting position! We hold his hips to support him, but it's so funny to watch because he really grunts to sit up and then is out of breath!
In this picture, Colin got himself to a sitting position...
Colin also lays on his tummy on the ball and lifts his head up!
He smiled at daddy while he was doing it... He is still lifting his head really high when on his tummy on the ground!
It's all such exhausting work though!
Friday, October 9, 2009
I belong on a listserve for families with a child with Down Syndrome and an email was recently sent out regarding the new show on Fox called Glee. In one of the more recent shows, a woman is talking about morning sickness and when asked said that morning sickness is a good thing because it means that your child is not going to be a "mongoloid". I followed the link and watched the clip because I assumed when it was mentioned in the email, that the negative comment was going to be regarding the use of the word "retarded" or something along those lines. I actually felt sick to my stomach for all of the people living with Down Syndrome and how hurtful a word like that is.
Throughout all of my early research regarding Down Syndrome when Colin was born, I read a lot about how children with Down Syndrome were often referred to as Mongoloids because of their appearance and mental capacities. I read the story by Gene Stallings about his son who was born in the 1950s (I'm pretty sure it was that time period) and it was suggested to them, and many other families, that they institutionalize their children because of their diagnosis. They were considered "uneducatable". It amazes me how far we have come that when someone is diagnosed with Down Syndrome today, it really means that they have a world of possibilities ahead of them, just like anyone else. Education is key, just like anyone else. Love is key, just like anyone else.
Sitcoms and comedies are designed to be funny. I enjoy laughter. However, I found it extremely hurtful that Fox chose to use such a word...period. I am sitting here trying to find a way to word this, but I don't even have to explain myself.
Chris and I were heartbroken when we found out that Colin had a diagnosis of Down Syndrome. We were scared and feared the unknown. Would he have health problems? Would he graduate high school? Would he ever get married? Is school going to be difficult for him?
However, Colin is the best thing that has ever happened to us and we wouldn't be who we are now if it weren't for him. It's always scary to venture off on a path that you hadn't planned in the beginning but just like anything else, you find your way and you realize it's ok to be on that path.
I'm sure we will still have some questions along the way and may have fears about the unknown, but Colin is showing us every day that with perserverance, you can accomplish anything...that's pretty good for only being 5 months old.
Thanks to Colin and to our friends and family, we are all raising awareness for Down Syndrome. We will change stereotypes so that hopefully, TV networks won't use hurtful words to make people laugh.
Wednesday, October 7, 2009
Colin had a really good session today as he showed Miss K some of the new things that he is doing including lifting his legs and starting to touch them, rolling easily from tummy to back, reach and grasping in different planes, attempting to lift himself up from his back on the exercise ball, etc. she was very happy with his progress and we chatted about his ITAP assessment. She was telling us that even though they were expecting him to sit, she is going in a specific progression with him so that he does all of steps with the right form and accomplishes them before moving on.
He was very vocal with her and very happy to see her! More pictures to come this weekend about the new exercises we have to work on!
Tuesday, October 6, 2009
...another way Colin reminds me to not worry if he's not doing something. He will, it just happens at his own pace!
Monday, October 5, 2009
Needless to say, being told that my child was diagnosed with Down Syndrome wasn't easy because it means that Colin isn't necessarily going to do things in the time frame he is "supposed to". He wasn't going to be following the "rules" of development. I jumped right into the research to make sure I understood DS, to find out what we needed to do (Early Intervention, blood tests, hearing tests, heart tests, etc.), when we needed to do things, when Colin might do things, and how we were supposed to go about all of this.
Through all of the early assessments, we were told things like: "Colin has low muscle tone" or "Colin probably won't hit milestones when other children do", or "he might have health problems", etc. It's not easy when it's still new to be told so many "negative" things along the way, especially when for 9 months we were expecting something different.
I have been writing about how people in our lives are raising awareness about Down Syndorme because of the wonderful things they are doing, but the most important person that is doing this is Colin. He is raising awareness of Down Syndrome by showing that he doesn't follow no sticking rules.
At first, he wasn't eating very well and now he eats solids (loves them) and holds his own bottle some of the time:
We were told that Colin had low muscle tone after a 2 min. evaluation so at 4 weeks, he rolled over from tummy to back over and over and over again...
(this is one of the first videos we got of him doing this on our phone).
Because of his low muscle tone, we were told he had to do tummy time all of the time. He wasn't always happy and in the beginning, he didn't do very well.
...and now he does this:
He couldn't sit...
...and now does this!
Sunday, October 4, 2009
Last year in February, our friends Jorie, Zach, Joe, and Melissa participated in the Polar Bear Plunge in Seaside Heights, NJ to. I went along, 6 months pregnant, to support them in their plunge to raise money for the Special Olympics of NJ. At the time, unbeknownst to myself and Chris, Colin was developing inside of me with an extra chromosome. Who would have known then, that this year, we would all be participating in the Polar Bear Plunge in honor of Colin.
Very shortly after Colin was born, Jorie took the initiative and sent out an email to all of our friends and family with the goal of getting everyone to participate in the Polar Bear Plunge as a team. As time has gone by, this intiative has turned into a reality and we will be plunging as Team CAT Crew in honor of Colin ro raise money for the Special Olympics of NJ.
The Special Olympics has a very important mission and philosophy in mind:
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.
Special Olympics is founded on the belief that people with intellectual disabilities can, with proper instruction and encouragement, learn, enjoy and benefit from participation in individual and team sports, adapted as necessary to meet the needs of those with special mental and physical limitations.
Special Olympics believes that consistent training is indispensable to the development of sports skills, and that competition among those of equal abilities is the most appropriate means of testing these skills, measuring progress and providing incentives for personal growth.
Special Olympics believes that through sports training and competition, people with intellectual disabilities are benefited physically, mentally, socially and spiritually; families are strengthened, and the community at large, both through participation and observation, is united in understanding with intellectual disabilities in an environment of equality, respect and acceptance.
Saturday, October 3, 2009
Friday, October 2, 2009
I am honored to participate in this challenge because my own awareness of Down Syndrome has significantly changed because of Colin.
When we found out that Colin had Down Syndrome it felt like nothing I had ever felt before. I can still picture myself in the moment when Colin's pediatrician confirmed the diagnosis; where I was sitting, what I was doing, how I told my husband, how I even put the phone down on the couch next to me. I remember feeling like my world was falling apart because I didn't know what we were going to do or what was going to happen to Colin.
One thing I have learned since that day is to take one step at a time…Colin has taught me to slow down and appreciate all of the little milestones along the way that build up to the bigger ones.
I am proud of Colin because he is showing us as his parents, his grandparents, aunt and uncles, friends and other relatives that he is a strong little boy. It’s ok that it takes him a little bit longer to accomplish a task because he will get there. I know that along the way we will have our good moments and not so good ones, but we will stand tall and take them one at a time, hand in hand as any family would.
I also should say that we wouldn’t be where we are today if we didn’t have the support of our friends and families. Colin is spreading awareness to everyone and we are so thankful that you all are supporting him in your own ways. Thank you for hugs and smiles, love and laughter, meals and babysitting, donations to charities and physical challenges in support of Colin…..
One step at a time…
This is the picture that caught Colin and Alison holding hands together when no one was looking.
This next picture is Colin sitting at the table at school like a big boy! Chris put him in the chair at the table just to get a picture...which I'm very thankful for!
We are so proud of Colin!