Celebrating Colin's 2nd Year

I know a lot of you have used this song "Amazing" in your own video montages of your children, but I honestly couldn't think of a better song for Colin, and I just love this one!

We love Colin so much...and are so blessed to have this special little boy in our lives!!

Enjoy watching a highlight of Colin's 2nd year! (If the video doesn't show the first time, refresh your browser.)

Photo and video editing at www.OneTrueMedia.com

Happy 2nd Birthday Colin!

Happy 2nd Birthday to our beautiful little boy Colin!
Thank you for bringing us on this crazy ride...

We love you with all of our hearts...

..and we wouldn't have it any other way!

Celebrate big Colin!!

XOXOXOXOXOXOXOX

Love,

Mommy, Daddy, and Kailey!

Colin's 2nd Birthday Party

This past weekend we gathered together to celebrate Colin's 2nd birthday, Mickey Mouse Clubhouse style! We had our family and friends over to honor our little boy with one of his most favorite things ever, Mickey Mouse! We had a great time and we loved being able to host the party at our house (as opposed to our townhouse clubhouse complex like last year). The only unfortunate thing was that the weather didn't cooperate, but we all had a great time nonetheless! Our little boy was dressed to impress and looked quite handsome as always!

Unfortunately, this little boy has his two upper eye teeth coming in, so although he may look happy and handsome at times, he is also struggling and in a lot of pain. He is so mopey and whiney and cries pretty easily and you can almost always see his hands in his mouth. He was pretty good most of the day at his party, but started cuddling with different people when he was uncomfortable and very tired. Despite practicing (and being successful many times), he wasn't into blowing out his candle (but maybe he will do that for us when there is not a crowd watching on his ACTUAL birthday). It was cute to watch him playing with his friends though and that he was able to do and be a trooper for!

On Sunday, we went up to my parent's house to celebrate Colin's birthday and my grandma's 85th birthday with my relatives. We had a great time, but by the end of the weekend with not a lot of napping and LOTS of tooth pain, Colin was done. This first video is of Colin in the car on the way home. He moaned for a good 30 minutes until he finally fell asleep. I just love how he realizes I'm videotaping and he gives me a cute little smile.

Today, I think Colin was at his worst with the teeth. You could often find THIS expression on his face...

Poor little guy...I hope these eye teeth break through soon! This second video is today when Colin was moaning again however I wanted to show you him grinding his teeth...it's tough to take! I noticed that since he is grinding those sharp bottom teeth on the top, he is leaving marks on his two front teeth! I hope once he is done getting the teeth in that he stops with the grinding!

More to come later this week with more pictures (thanks as always to Jorie!) from the party and when we celebrate on Colin's actual birthday!

Feeding Follow-Up

Today was our three week feeding therapy follow-up at St. Joseph's Center for Pediatric Feeding and Swallowing clinic. Just as I expected, there hasn't been much of a change yet, so we didn't walk away with much to talk about.

We met with the Nurse practicioner first who asked us questions about Colin's health. Two of the areas that we have made progress with are internal issues regarding the reflux and regulation of Colin's constipation. As was explained to us on the first visit, when children have issues with reflux and constipation, it often affects feeding for several reasons. Reflux obviously affects feeding because if food and stomach juices are constantly coming up, it irritates the lining of the esophogus and often turns kids off to eating. Just before the initial feeding assessment, Colin's pediatrician started him on Zantac 2x a day and it took a week or two, but we finally started to see a decrease in his spitting up. As of today, I have maybe seen him spit up once all week.

At the initial visit, we discussed the fact that Colin has often pooped "rabbit pellets" for as long as we can remember, even though he has always gone regularly. The NP explained that when children are constipated (as is evident with the rabbit pellets), they are often "backed up" and affects how well the stomach can empty as well as the want for food (because you often feel more full and bloated). She started us on either Maalox or Mylanta (although we went with Miralax at many recommendations including our pediatrician's) to turn his poop into "mush". Well, I can assure you that in the past two weeks, we have successfully turned his poop into a LOT of mush. The NP was very happy with this because she said that he is finally emptying completely, allowing for better food movement through the GI tract. She feels that these areas will improve feeding.

They watched us feed Colin and he still continues to do more work than necessary with pureed foods. I told them that there are days when he has successfully been able to move the food the way they want him to, but it is not regularly just yet. We need to continue to give him pureed foods until he is able to get this technique of proper tongue movement down. Unfortunately, until he can move food from the front to the back and swallow appropriately, we will not be moving forward. However, she did want us to introduce pancakes and bananas back in to his diet with us sticking the pieces in the far sides of his mouth to give him the practice he needs to move the food from the sides back to the center again.

Yes, it's a lot of work, but we will keep plugging along. Colin's eye teeth on the top are BOTH are about to break through and he is still working on a molar, so feeding has been challenging to say the least these past few days. He pretty much spit all of his dinner out at me, but at least I know the reason this time. Hopefully those teeth are through soon so we can move forward again!

Testing Time

With Colin's 2nd birthday fast approaching, we are also spending a lot of time with our therapists this week going through the gamut of testing for his annual Early Intervention meeting. It has made me think a lot about what Colin IS doing, as opposed to what he isn't. All of the testing used to make me so anxious, especially when a therapist would assign a specific area of development an associated age. As we all know, children with Down Syndrome DO accomplish all of the skills that typical children do, it just takes longer. Therefore, most of the ages associated with a skill for him are typically months younger than Colin's actual age. We are lucky to have the therapists that we do because back in the beginning, I would often have tears when I would hear these numbers. Back then, I was always worried about exercises and accomplishing skills and the thought always crossed my mind that we just weren't doing enough. If someone would babysit for Colin, I would leave a list of things for them to practice with Colin (when most people leave a list of emergency numbers, when to feed, where things are, etc. lol). I was adamant that he get tummy time, or practice grasping objects, etc. It makes me chuckle now... In this picture, Colin is about 2 months old. He had started EI when he was about a month old so with all of it being so new to me, I was overwhelmed with what we needed to do to make sure Colin was getting everything he needed. We were always making him work. With Colin turning 2 soon, I think about all of the things that he IS doing to get where he is now. I am amazed daily at the progress he makes to accomplish our goals for him. Sure, it's a laundry list, but to us, it's a laundry list of things that he. can. do. So he will, when he is ready. It would be silly of me to lie and say that the things he isn't doing don't bother me, but regardless of whether or not you have a child with special needs, we all want what's best for our children and have high hopes and aspirations. It may sting a little when things aren't what we expect at that time, but the future is bright...and guess what? Those stings are short-lived because when they do accomplish something, it's that much more exciting and cause for a celebration!

Earlier this weekend I was going to put up a post about how Colin has been a "bad boy" lately and had some video proof of that. His teeth have put him in this little funk again unfortunately, but I can at least associate his bad behavior with the pain of his molars and eye teeth coming through. It's not that I am making excuses for this bit of trouble he has been getting into, but, I do see a direct correlation to how he acts when he is in pain. On the worst days, feeding is challenging because he spits out his food (must hurt his gums) and he starts hitting/swatting at people and Kailey when they do something, say something, or try to get him to do something that he doesn't want to do. In one of the videos that I took, Colin is smirking at me while I tell him no to going into my computer desk cabinet that he knows is off limits. It makes Chris and I laugh at times because in some ways, this mischievious behavior is just so typical that we love it! It is also frustrating, but that's when he is just being plain ole' defiant. I know, I know, you are probably thinking to yourself "how can this little boy do anything wrong?". I assure you, he is a typical two year old in so many ways. His relationship with his sister is slowly growing and I love seeing him initiate contact with her, especially when he wants to hug and kiss her. Today when she was crying, Colin was standing at the side of the couch next to her and was lifting up his arms to her as though he wanted to hug her (or have her pick him up since I wouldn't...lol). We have been working really harding on this feeding technique and although I still don't see big changes yet, Colin has been tolerating our efforts. To reward this, we still have allowed him to participate in the feeding (albeit minimally) and it's amazing how he is now aquiring skills to self-feed with a spoon when we haven't been working on it as much. In this video, Colin is practicing feeding himself pudding...



Colin knows what he wants and is finding more and more ways to express himself. Today, he started pointing at the fireplace mantle and saying "yes" and signing bubbles, and when I looked over, the bubbles from the weekend ended up there. I asked him if he wanted to blow bubbles and he vigorously said "yes". He asks to watch Mickey Mouse all the time, although there are really only specific times in the day that he gets to watch. In this next video, Mickey Mouse ended so he crawled over, stood up, and took the remote off of the couch and was trying to put it on. It's hysterical how he knows what to "do" in order to get to Mickey...



Colin's speech and language skills are slowly growing and we get more and more excited every day as Colin says new words/sounds and communicates to us. While I was feeding Kailey yesterday, Colin was playing with his activity table and I started to realize that he was singing the "ABCs" with the music. When the song would end, he would spin one of the components to make it go again. I loved it!

Thankful

I am thankful for this little guy for many reasons... ...but most especially yesterday when i was at the grocery store because of an encounter I had with another gentleman thanks to Colin...

As always, Colin was waving at everyone who crossed his path and giving kisses out to many. I have always enjoyed bringing him to the store for this very reason and although it may slow me down, he makes it fun...

While I was picking out lunch meat, Colin must have waved hi at a particular man who came over and started talking to Colin and telling him how adorable he was. Colin was trying to give him a kiss, so the man gave him a high-5 instead. He started telling me how happy Colin was and much he loved it and then he started sharing about his journey. He told me his son had been deprived of oxygen at birth and yesterday was a big day for them because he had his first day of school. He seemed very excited to share and told me his wife took many pictures. He went back to talking to Colin and introduced himself as Justin.

I was thankful for Colin because he has introduced us to a new community of people... there is something there that allows us to feel comfortable with each other and share our excitement when our children accomplish something. I am so thankful for having "met" all of you because you make me feel comfortable to share our tough days and rejoice with us on our great days. You sympathize and empathize, encourage and cheer us on. You come up to us in public and tell us that Colin made you smile and his smile makes you feel comfortable to share your journey with us...

I'm thankful. I'm thankful for this beautiful little boy who brought me all of you...