Tuesday, June 29, 2010

Rough Waters

Any parent knows that raising a child has it's moments where things are up and things are down. It's the ebbs and flows of life in general. Raising a child with special needs is the same way, but with it's own set of challenges.

I have been having a really rough time with Colin's feeding issues lately. I get choked up just writing about it because it is something that I have been incredibly frustrated with. I get even more upset because I feel that I shouldn't be so upset since Colin does so many wonderful things, he has great health, and he makes us so incredibly happy. Those things are such great reminders on a daily basis and they do help to overshadow meal times.

These difficulties remind me of visiting the beach (if you're someone who loves it as much as I do). There are those beach days that are just perfect and make you so happy just to be there. The temperature is perfect, there's a nice breeze, the water is warm, and the sun is shining so brightly. It might be a little bit too hot or a little bit too chilly, but you would never know because it's otherwise beautiful. However, there are those days where the water is rough, it's too cold, the winds are strong and it's just not comfortable to be up there. Those days don't happen that often but when they do, it's frustrating because you love the beautiful days so much. One thing that remains the same is that no matter what the day is like, you simply love the beach. It's your favorite place to be...

I am so proud of Colin for the progress he is making in so many areas. I don't want this venting post to overshadow those things...but, mealtimes are such a struggle. The feeding therapy assessment was great and we got a lot of great tips, but we are home now and trying to implement them is difficult. We are waiting to see what our insurance will cover in terms of outpatient services at the specialized hospital, and I am waiting to see what EI will help with in terms of getting an OT assessment.

I have been food processing my little heart out trying lots of new things with him. Some things have gone over really well, while most things it's a fight to get something to stay in Colin's mouth. He complains if you try to get him to self feed with the spoon (which he CAN do, but has a mini-tantrum if you put the spoon in a place where he can grab it, even though he has often put it in his mouth before). He will NOT self-feed at all (even things he loves like ice cream). One day he will eat something really well, the next day he will refuse to eat it. Most days he can suck milk up fine, other days all of the liquid falls out of his mouth (although, he loved the milkshake he had today and I can assure you that NONE of it dripped out).

I know that we have had lots of mini struggles along the way and we have overcome them. I think things just feel so difficult right now but this is the current struggle. However, it's starting to make me dread mealtimes (and make me more emotional) to have to keep pushing and worrying and fretting over quantities and calories and varieties and make sure Colin is actually eating enough.

So I ask all of you who have been through this and/or are still going through this...

Do you have any suggestions on how to get Colin to start self-feeding?

What has worked well with your children?
Thanks for your help!

Sunday, June 27, 2010

Our Life in a Nutshell

Last night Chris and my sister were making fun of me for "losing" me for a span of about 2 hours while I got caught up on my blog reading (and I didn't even get to finish!). I was trying to read as fast as I could to get it all in. These days, that's how I feel with everything...rushing to stay afloat with all of the things that I am trying to get done in a day. They're not important to list, but it's the way life goes I guess. I think once we finally move permanently, things will start to feel a little less overwhelming (at least I'll have my own computer back so updating the blog doesn't feel like a chore!).

Anyway, these are some tidbits of our life...

I received a phone call and an email from Shoprite regarding my experience where I overheard one of the workers using the R word. The woman who called left a message that was several minutes long where she apologized for my experience. She said that it was not the way she wanted her employees to portray their business and since Shoprite was owned by different companies, she was forwarding my email on to the company of the store that I visited. A few days later, I received an email from the customer service department of that company. Here are a few excerpts...

"We were very concerned to read about the associate conversation you overhead while shopping. Please accept our deepest apologies. Such remarks are insensitive and unacceptable and we want to assure you that they do not reflect the values of the store or the ShopRite/Wakefern organization."

"As you suggested, we will strive to use your experience as a training tool to help our associates have a better understanding of the impact of their words and actions on customers and their fellow associates."

"We know how difficult it was for you to share your experience with us, Mrs. Tobin. It’s our hope that your feedback will serve as lesson for all of our associates to strive to treat customers and each other with caring and respect."

I was happy they took the time to respond to my email but I also hope they are true to their words and will use my experience as an educational tool for their employees.

Colin's pediatrician called the other day and informed us that Colin's blood work results showed an increase in the thyroid enzymes circulating in the blood. This is common in children with Down Syndrome, so she is referring us to a pediatric endocrinologist so that they can check his thyroid and determine if medication is needed at this time. She said that the enzymes shouldn't be above a 5, but Colin's were a 6. We'll check it out and go from there.

Colin continues to work hard with physical therapy. We are happy because he is finally starting to bear some weight on his legs either holding on to the seat of the couch, the back of the couch, and most especially, where he can "pull up" on something where he can grip better. I say "pull up" lightly because he is starting to make some effort, but with assistance.

I have now run in two 5 mile races over the past 2 weeks and have accomplished some big goals (Colin is such a great motivation!). The 1st race I ran with our friend Simon and was able to run under 8 minute miles for a personal best in many years. Colin and Chris were such great supporters!

Yesterday, I ran the 2nd race with Simon, my brother Pat, sister Kim, and Dad. If you remember from last year, my goal was to be able to finish the race after having had Colin 2 months prior. This year, I wanted to run WITH Colin and still be competitive.

I was happy with myself because while my time wasn't as fast as it was the week prior, I accomplished a large goal by running with Colin. I'm so lucky to have such a supportive husband...he tells me how proud he is of me and it makes me feel like a million bucks! Chris, my mom and Leslie were great cheerleaders!

Yesterday was the official start of our summer!! These are the days where we spend most of them on the beach...there is such a different feel about summer for me than any other time of year. Despite everything else going on in my life, I can relax at the beach! Colin was ready to go up for the 1st time in his wagon...

He is really enjoying the sand and the sun (and as always, laughing with Daddy!)!

This warm weather makes for one sleepy baby!We are trying to enjoy as much family time as possible...that makes anything better!

Wednesday, June 23, 2010

Therapy Updates

Whew...what a busy week we have had! We had/have 4 hours of therapies, 1 day of blood work, and 1 new assessment. Everything has gone well so far, so we are pretty happy.
We started with speech therapy last week and have had 2 sessions with our new therapist. She is very nice but I'm still very carefully testing out the waters. We had two main goals with adding speech: lots of oral motor exercises to improve receptive and expressive language as well as acquiring new skills to improve Colin's feeding difficulties. As of right now, I feel that a lot of the sessions have been very similar to the things our developmental therapist works on. I'm also a little concerned because I don't really feel like we are working on our goals specifiically. I'm going to try this out a little longer and then see where we need to go from here.
Developmental Therapy:
Colin has been doing really well with his DI therapy. His receptive language in terms of actions associated with singing songs (itsy bitsy spider, if you're happy and you know it, twinkle twinkle little star) have been improving, he is doing really well with oral motor imitation, his expressive language is coming along (using signs when prompted), and he is able to start putting things into a container (his fishies into their fish bowl). A lot of these things are not completely consistent, but he is making strides!
Physical Therapy:
Colin continues to work really hard. His gross motor skills are coming along slow, but as always, he is making improvements so we know that the bigger skills will come with time. On his tummy he is great with pivoting both ways in a circle on extended arms, he will roll all over the place with intention, on a smooth floor he will push himself backwards, move some inches forward in an army type crawl, and he is trying really hard to lift that tushy off of the ground. I am just waiting for the day that he will be able to combine tushy up with extended arms and get his torso off of the ground. Unfortunately, we are having a really hard time with transitioning from seated to tummy and vice versa, maintaining an all fours position, and weight bearing on his legs. As I've mentioned before, Colin is an observor, so he is content just watching everything from his position (hence why we need to keep pushing him).
We love Miss Kathy because she is great at breaking down the bigger skills into components that will help build strength and get Colin to accomplishing the bigger skill. This picture is Colin this morning on his knees and propped on extended arms. These are the things that we are pretty successful at getting Colin to do (it's just like girl push-ups on your knees vs. guy push-ups the full correct way). Slowly but surely right?

Feeding Therapy Assessment: I have talked many times on here about our concerns with Colin's feeding. Lately, we have gotten to the point where we want to pull our hair out at meal times. However, we can't complain too much because Colin IS improving...albeit slowly. When we got our speech assessment through early intervention, the speech therapist that came to do the assessment told us about the The Children's Specialized Hospital who has a team of therapists that would evaluate him during a feeding session and help us work towards improving meal times.

You better believe the next day I called right away!

We had our appointment today and I am extremely happy with the way that it went. The feeding assessment "team" involved a psychologist (I think that's what she was), dietician, occupational therapist, and speech therapist. They asked a lot of questions to begin regarding Colin's eating habits and our concerns.
Our concerns:
- lack of self feeding (except pretzel rods)
- difficulties with "chunks" and harder textures
- Difficulties controlling liquids through a straw

After they highlighted our concerns, they had us feed Colin all different types of foods that we give him on a regular basis including things he loves, things that he will eat but has trouble with, and things he does not want to eat. They watched for approximately 30 minutes and gave us some tips while we were feeding.

The conclusions:
* Colin's problem is not the chunks/textures themselves, it's the inability to do something with the food. He just doesn't know what to do with anything he can't just swallow like pureed foods. They had us push the food off of the spoon into the sides of his mouth, and they saw hints of "munching" and moving the food.
* He does great overall with the cup, but still struggles with controlling the amount of liquid from a straw.
* There is some clear lack of skill with picking food up and putting it to his mouth.

The solutions:
* Place food in the sides of his mouth so that he has to learn how to do something with it.
* All food should be put in the food processor and made into really small pieces and mixed with a thicker consistency that "goes with" the food. For example, instead of us "hiding" all of the chunky foods in applesauce, we should try to find something that goes better with the vegetables. Broccoli mixed with the water it was steamed it, turkey and gravy, etc.
* Any types of puffs, cereal, etc. that he doesn't do well with should be soaked in milk first and then put into the sides of his mouth to practice doing something with it.
* Something thicker like a smoothie should be sucked up from the straw so that it's slower going into his mouth as he learns to coordinate sucking, moving, and swallowing the liquid.
* Enhance the self feeding that he does do like self feeding with a spoon. Instead of having him grab the spoon with food from our hands, put it on the tray and have him pick it up from the tray.

We will wait to hear what our insurance covers in terms of outpatient feeding services, but in the meantime we have a lot to start with.

Colin was extremely social while we were there waving hi and giving kisses out in the waiting room.
While we were waiting for the team to come back, Colin was having fun entertaining us and making us laugh!
After the assessment, Colin went and hung out with Daddy at work!
Earlier this week, Colin had to get another round of blood work taken to assess the standard year test of lead, and then check on his thryoid function (which was fine the 1st time) and cell counts. Our 1st experience was traumatic, but this time, although they had difficulties getting his vein again, went much smoother and quicker. Colin was such a good boy and did not cry too much! He had to look tough for the 2 young pretty nurses that took care of him!
Healso hung out with me at work a few times this week too!
(Although I don't know how much work you can get accomplished when you have this face looking at you!)
Lots of toys to play with, yet, he tries to dig stuff out of the box that was on the floor!

Sunday, June 20, 2010

Happy Father's Day!

Today is a great way to celebrate all of the fathers in our lives!

Colin is so lucky to have such a special Daddy who loves Colin so much! You can tell how much Colin loves his daddy because when Chris walks into a room, Colin's face just lights up and he gets SO happy! In the next 2 videos, you will only see Colin, but I will tell you that his reaction is because his Daddy just walked into the room...just watch how happy Colin gets to see his Daddy!
Chris, we are so thankful that you are such a great Daddy to Colin. We hope you had the greatest father's day! We love you so much!

We would also like to wish our fathers a very happy father's day as well! We are so thankful to have you both in our lives!

Colin and his Grandad...(my Dad)

...and Colin and his Grandpa (Chris' dad)

...and to ALL of the fathers out there...happy fathers day!! xoxo

Friday, June 18, 2010

Colin's 1st Haircut

Colin got his 1st haircut today!
He was such a good boy! Going into this, I didn't expect Colin to cry, but I thought he would be so interested with what she was doing to his head that she would have a hard time actually cutting it. I also didn't expect him to sit in his own chair! Not only was he excellent, she even used the trimmer and he didn't even flinch!

He only made ONE complaint when we 1st put him down, but I don't even know if you could even consider it a complaint!

At 1st he was very interested in Melissa with what she was doing to his head...in this picture he was like, "what are you going to do with those?"
But then, he was so interested in the steering wheel on his own special seat...
...and looking at what faces daddy was making.

Oooooh, don't I look handsome?
So what do you think?

Getting the mohawk shaped...

Checking himself out in the mirror...

The behind look...
I swear I haven't giggled this much in a long time! He was SO GOOD and it was so much fun to see all of the cuteness that went on while he got his haircut! All of that cuteness must have been exhausting because he took a 3 hour nap this afternoon!

Wednesday, June 16, 2010

I am Thankful for...

I am tired tonight, but always hate leaving the blog with a negative post up there, so I wanted to change it up and do something fun...

I got this idea from my friend Amy at One Day at a Time (who I would so love to meet someday!) to post about the things that I am thankful for right now...
...this face that Colin makes when he thinks something is funny. It's kind of like this:

...a husband who always takes care of me, no matter the time of day (or time of night) by rubbing my head to make me feel better.

...ice cream.

...the McAlisters for giving us a place to stay for a whole month. We love you guys!

...a Grammy who tells me every day that I talk to her that she prays for me and my family. It means so much!

...my favorite comfy pants.

...those little moments that wouldn't mean anything to anyone else, but happen when you catch something that makes you smile and even makes you a little teary eyed because it was that great of a moment.

...when Colin fits in the crook of my neck and feels so warm and loving.

...good/relieving news.

...and many more things!

Tuesday, June 15, 2010

Ignorance at its Best

I made a quick trip to shoprite today with Colin. While I was there, I heard an announcement several times for an employee to head to the dairy section with a mop. As I approached that area, there were several employees standing around the milk warning the customers of the mess on the floor. I grabbed what I needed to try and get out of their way quickly as another employee came from the back and appeared very flustered (she was also the same one who I heard making the announcement). One of the other employees asked her where the person was with the mop and she said "ugh, he's so retarded! This is why they shouldn't hire retarded people!".

I'm sure you can only imagine what my reaction was...
I froze. I felt burning/stinging tears in my eyes. My mind raced with something to say to this girl but I couldn't get anything out of my mouth. I looked down at Colin and he was as happy as could be smiling at me...which made those words feel so much worse.
I walked away because I just couldn't figure out how to handle the moment. I felt so mad at myself for not saying anything, but I honestly couldn't do it. It has bothered me all day so I did do something about it.
I sent an email to Shoprite (in a very professional manner) and told them what happened. I explained how hurtful the words were and why. I also told them that I understood there really wasn't much they could in response to my email to make me feel better. However, I asked that they please use that moment as a teaching moment for their employees. I included my blog with hopes that someone might take a look.
Fortunately, I had this little guy with me all day to keep a smile on my face. I know that I can not change every ignorant person in this world, but hopefully, by sending the email, at least one person has learned how hurtful words can be and at least one person was educated by Colin's and my experience today...

Monday, June 14, 2010

Weekend Recap

We had a very busy weekend this weekend! My good friend Colleen was married on Saturday to her love Jon...she was a friend that I had met in college my freshman year. The way we met was a very funny story. During Anatomy lab, my lab partner dropped out of the class and I was left to be by myself. Colleen immediately friended me and invited me to join her and her lab partner so that I wouldn't have to be alone. We have been friends ever since!

It was a very beautiful wedding and I was honored to be a bridesmaid... Congratulations Colleen and Jon!On Sunday, we went to Colin's Uncle Brian and Aunt Maureen's house to celebrate Gammy and Grandpa's birthday's/father's day. We had yummy food and cake!

On a side note, Colin has been doing SO MUCH BETTER with the straw lately. He has really seemed to lose interest in the bottle and it's getting harder and harder to get him to drink from it. We're in a little bit of a transition period as he is not quite ready to drink from the straw by himself completely, yet, doesn't want the bottle. We still have to help and assist colin with the straw because many times he sucks up too much liquid at a time and then a lot of it ends up out of his mouth. He's working hard at it though! This tupperware "juice box" has been our most successful container with a straw so far (and the cheapest!).

Thursday, June 10, 2010

Last Day of School

Today was Colin's last day of school! It's amazing how fast time goes by! If you can remember, I wrote this post on his first day back in September...wow has Colin changed!! I mean, he was a cutie back then, but look at him now!

One thing Chris and I always knew from the beginning was that we were going to have to use day care for our children. One day over breakfast at a diner we actually tried to calculate the numbers to see how it would work if I stayed home and it just didn't work unfortunately. We were in the hole long before we bought groceries and turned the lights on. It's just the way it is. We worked hard to find a place that we felt comfortable with and from the 1st moment I walked into the Growing Tree Children's Academy, I just knew we had found it.

The 1st week I definitely had those moments dropping Colin off where I shed a few tears and worried about someone else taking care of my baby, especially Colin. He needed a little bit more than most kids and I worried about things like if he would do enough exercises or if he would get all that he needed. However, as I got to know the teachers and staff, I didn't worry...

I am so thankful for Colin's teachers because I know that they truly care for him. This 1st year has been so great and I know that he got everything he needed and more.
Thank you to Miss Kelly...

Miss Heather... and Miss Nikki... for loving Colin and caring for him so much!!

Also, thank you to Miss Traci...

Miss Karen...
and Miss Robin...

For welcoming us to school with big smiles every day and loving Colin too! We love the Growing Tree!!

After school and work we went out to eat to Olive Garden!

Colin was such a good boy waving hi to the people around us, but he also seemed a little bit bummy...he was probably sad that it was his last day of school! Little does he know what he has in store for him all summer! A little dessert cheered him right up though!Thanks again for a great year guys!