Look on the Bright Side...

We had a follow up appointment today with the feeding clinic at St. Joe's and it was much anticipated for me because of our current struggles with Colin's eating. As I mentioned yesterday, we hit an all time low and it's been overwhelming because of the fact that Colin has to eat, and he isn't. However, this was probably the best appointment we have had there so far and I feel a little bit more encouraged than I did before.

Colin playing with Mickey (yep, that's the insert to his new potty on Mickey's head)

At the beginning of the appointment, we spent a good amount of time discussing the things that have been going on lately between changes in Colin's health and the fact that he is refusing to eat. I let them know that we stopped the "method" we had been working on because it got to the point that it only made it worst having to manipulate his mouth during every bite. I was originally worried about being "reprimanded" for this, but they were so understanding and sympathetic that I actually felt better.

I told them about my concerns that Colin's eating habits are worse when I feed him (and I think it does have something to do with the fact I am the strictest when it comes to the eating because of my concerns) and that I thought it had something to do with his age.

They did think that these issues were contributing factors, but after much discussion of Colin's behaviors associated with eating, they really feel there is an underlying cause and when it was all explained to me, it made so much sense.

As most of you know, children with Down Syndrome have low muscle tone and we know that Colin does as well as evident by his gross motor delays and accomplishing gross motor skills. However, one sign that Colin has low muscle tone on the inside is the fact that he is not consistent when it comes to pooping. Most of the time, Colin poops what looks like rabbit pellets and yesterday, he had a really hard time going (to the point of crying because he was so uncomfortable). We do give the Miralax as suggested at one of the earliest appointments, but I haven't always been the most consistent because when he would go, I would back off until I thought he needed it again. The problem with this is that it then takes a day or two to start working again after being given the Miralax. She was explaining that when children have low muscle tone in their gastrointestinal system, the muscles have a hard time emptying the colon causing a back up and when everything gets backed up in there, it causes the to harden even more. She had me touch on his stomach in the area of his large intestine and you could feel little hard rocks in there. Poor kid.

So, step number one is to give the Miralax every day in addition to the Previcid that he is already taking for his reflux. We know the Previcid is working because we do not see him spitting up or having troubles when it comes to food and liquid coming back up.

The other problem where the low muscle tone comes in is that the muscle that leaves the stomach also has low tone, so it has some difficulties emptying the food into the small intestine. When the stomach is slow to empty, it means that he would stay fuller longer and have a loss in appetite because the food is essentially just sitting there.

One key question that she asked in regards to this was whether or not the meals get worse throughout the day and the answer is yes. When Colin eats breakfast, it is usually the best meal of the day and then does progressively get worse as the day goes on. Well, if the stomach isn't emptying properly, the large intestine is getting backed up, then he is going to feel more full and uncomfortable and truly not have an appetite. When a child doesn't have an appetite, then they don't have an interest in trying new foods. This would also be a reason why he would have regressed from the progress we had made.

Doesn't it all make so much sense? It makes me feel very encouraged because we have a plan in place to overcome some of these issues that are concrete. They are medical problems. Once these problems start to get fixed, then they feel that his appetite will come back and he will be more interested in food again.

They also felt that if putting him in front of the TV works right now at the worst meals, then it is ok because that is something we can fix later. They also said that it is ok to give him ice cream for dinner if that's the only thing he will eat. He has to eat something.

So, we have more information than we had before. We have a plan. We have backup plans if this one does not work.

I feel encouraged.

Hurricanes and Whirlwinds

I feel as though it has been a whirlwind of a few days between worry about Colin and then about the approaching hurricane. We have been all over New England in the past few days (which we did enjoy), have squeezed in some doctor visits, Chris has worked two jobs with long hours, and we are getting ready for our new routine to begin again in a few days.

- whew -

We. are. exhausted.

Needless to say, THIS little guy gave us quite a scare this past weekend!

A couple of weeks ago, Colin had routine blood work done to check his thyroid levels so Dr. Uma (pediatrician), also threw in a script for a CBC (blood count) which we do every so often to make sure everything is where it should be. Unfortunately, which turned out to be fortunately, the results all went to the endocrinologist instead of to each respective doctor, so the endocrinologist called us last week to tell us she was very concerned about the levels of the different cells in Colin's body.

However, she started the conversation out by telling us that everything was looking good with his thyroid, but she was very concerned about the results she got back on the CBC. She said "I'm not sure if you are aware, but there is an increased risk for children with Down Syndrome to develop leukemia".

- Heart stops -

She continues on to tell me that his red blood cell and white blood cell counts were very low. She showed the results to the hematologist in the group who suggested we make an appointment to come in. I made a very panicked phone call to Dr. Uma's cell phone and after checking on the results, said that because his platelet count was ok, there wasn't a reason to panic but did suggest we see the hematologist (who actually called us to schedule the appointment).

We got in on Monday morning (amazing how fast you can get specialist appointments when there is a serious concern). The doctor was great, explained everything in layman's terms, and did repeat blood work because he felt that he could get better results that what a labcorp type place could get. He said that even if these were the earliest signs of leukemia, there really wasn't anything we could do but wait. However, he was pretty confident that Colin was ok.

We got a call today saying that the white blood cell count was back to normal (could have been low to different types of immune responses like teething, virus, cold, etc.) but his red blood cell count is extremely low. So, we had two options: liquid supplement or make sure Colin gets foods rich in iron.

Right. I'll go with option #2 please! So, we are relieved to have our prayers answered because the prospect was very scary. We need to continue to monitor his results in the future and check back in if need be.

Our other worry is that the feeding problems have taken a dramatic turn for the worse and now Colin is pretty much refusing all foods except for ice cream, pudding, and yogurt, and eggs. As in, will. not. eat. He screams, he cries and will not let you put anything else (like pancakes, cottage cheese, pastina, etc.) into his mouth.

I literally was in tears and near breakdown today because it was the second day in a row of the worst possible scenario, so I picked up the whole chair, carried him into the family room, and turned on TV. Guess what, he ate.

I never wanted that to be an option, but it has to be right now.

He has to eat. What else am I supposed to do? I partially and honestly think it's me because I think he knows I am frustrated (I worry about weight, nutrition, etc.) and is doing all of this on purpose. He doesn't do this to daddy at breakfast. He didn't do it to my parents when we stayed there this weekend.

I just don't know what to do and to be quite frank? I want to throw in the towel on this whole feeding thing...but I can't, because he must eat.

Dinner last night? Pudding and ice cream. Dinner tonight? Ice cream. Great. Fantastic. Super.

Because of all of our stress with Colin, and the stress related to the upcoming hurricane (we live 5 miles from the beach), Chris and I decided to change around our family vacation plans and head up to Boston anyway sans kids. We dropped them off on our way to Boston with my parents (they live on the way), spent one night out alone, made it to 5 innings of the game and then left to get back on Saturday before the hurricane actually hit.

We were adventuresome for a change instead of taking the conservative route and enjoyed some de-stressing together. At the game we celebrated 8 years together from the day we went on our first date to now...

We made it back to my parents before it even started raining in North Jersey, and hunkered down for the brunt of the storm. We did a lot of playing and relaxing...

...and although I didn't sleep a wink, got through unscathed without any damage to mine or my parent's house. We were so lucky.

Other than that, we have been riding out the end of summer just enjoying each other before we are back in our routine...

Kailey is growing like a weed and I truly enjoy watching her and how curious she is about everything. Things are different with her; not necessarily good or bad, but different and it makes for an enjoyable ride because we see things in a different light. We wouldn't make any ride any different...

We have been trying cereal with her again and she is started to get the hang of the whole eating food thing...

We had one last playdate today before school starts with our buddy Logan and his Mom Teresa and brother Ryan. We are lucky that they live so close to us and had so much fun today! Colin gets around the park one of two ways...

#1

..and #2. Needless to say, his knees are black. We are patient, but also can't wait until he is walking!

Afterwards, we made an impromptu trip for dinner to Ihop and despite the fact we had 4 kids there, they were all very good (well, except for the fact Colin wouldn't eat anything but ice cream). I enjoy watching the boys grow and change together because although they share a similar diagnosis, they are also so different personality wise, which is great!

Our attempt at getting all of the kids together, but I don't think any of them were looking. Ryan and Colin were saying cheese to each other!

We had a lot of fun and can't wait to do it again! If you could, please say a prayer for Logan as he is going in for surgery at CHOP on Friday to have his tonsils and adenoids out. We know you will do great Logan!

Inspiration Through Art

Yesterday, we had the amazing opportunity to have a photo shoot at a park in Edison, NJ through the Inspiration Through Art organization (formerly the Littlest Heroes Project). If you get a chance, click on the link and check out the organization as they do some really cool things for children with disabilities, illnesses, etc.

The mission at Inspiration Through Art is to "help provide and capture memories for families who are dealing with hectic schedules due to having a child who is suffering from a serious illness or life altering disability. ...We are here to let them know that they are heroes to many, and to share their inspirational stories and photos with the world".

Pretty neat huh?

I had signed up months ago, but with the change in organizations, the application had gotten lost in the shuffle. I reapplied less than a month ago, did a little research on the list of photographers, and got set up with Terry at A Pretty Pixel. I chose her based on her website; you should see some of her photos! Can I just tell you, her work is amazing! She was so calm and relaxed with Colin which made for a pretty comfortable session with some great shots. She even got a few of Kailey and then one of us as a family. If you live in NJ and are looking for a great photographer (particularly of newborns and children), check out Terry's company because she is great!

Want a little sneak peak at some pictures? Click here!! I can't wait to see more!

Family

"The love of a family is life's greatest blessing"

This weekend marked the end of another wonderful summer with my family. I have been so incredibly lucky that I have spent my entire life vacationing at the beach ranging from a week to the eight weeks that my parents now stay for. Of course, we don't stay with them for the entire eight weeks, but the beauty of it all is that we only live 20 minutes away from the beach house. It makes for an entirely relaxing summer as we sit on the beach and family comes and goes. I. am. lucky.

One of the best parts of the whole summer was the fact that Colin absolutely loved the beach and despite the fact that I didn't actually get to sit down, I had a lot of fun playing in the sand and splashing in the water with Colin. He's a fun and popular beach baby!

Most of my family lives in NJ except for my brother Tim who now lives in North Carolina. This summer he came up for a week and so we planned our annual dinner/game night/photo session at the bay with all of us together. My parents have been taking pictures of the four of us together since we were all babies with the two classic photos being one of us facing forward and then facing backwards.

Colin got a kick out of watching us pose for our pictures...

Our family has been growing, so our photo session now includes the "extended ones"...

We are so incredibly fortunate that my parents are nearby during the summer and it's so nice to get to spend so much time with them...

This picture of the four of us is by far one of my most favorite ones yet...

My parents with all of their kids...

...My brother Tim and his girlfriend Val. We had a really good time getting to know her!

...I love how Colin asks to hold his sister now and totally cheeses it up for the camera!

...Daddy and his little boy.

Every summer starts with this thrill that we have two whole months ahead of us of sitting on the beach and spending time together. It's amazing how fast that time goes by culminating in the end. The important part is that we truly enjoy our time together and although the summer must come to an end, it just means that we are starting our next step in the journey to another whole year of new things to come...

"Other things may change us, but we start and end with family."

I dooooo!

One of the things Colin's speech therapist has been teaching him is to respond and say "I do" when asked if he wants something.

He still needs to be prompted with this, however, his response is hysterical. He overemphasizes the "do" part and sometimes even gets this look in his eyes where he moves them back and forth. I tried to do my best and get a video of it, even though he didn't cooperate the best. However, you will get the idea.

Make a video - it's fun, easy and free!
www.onetruemedia.com

The "Community"

Throughout this summer, Colin has formed quite a following on the beach. I can't tell you how many times people will walk by our set up on the beach or over by us at the water and say "hi Colin!" and I'll have no clue who they are. We're talking lifeguards, children, and adults of all ages.

Earlier this summer, Chris and I were out walking one night trying to get the kids sleepy enough to put them to bed when a woman came up to us while she was walking her dog with her triplet granddaughters and all she said was "O.M.G. that's all. I. have. to. say". She came running over to Colin, swooped him up and immediately fell in love. It turns out, she has a nephew with Down Syndrome who she raised for awhile until his siblings were old enough and decided that they wanted him to live with them. She swoons over Colin and Colin just loves her granddaughters. Every day she came over to get a hug and a kiss from Colin and we talked all summer. Her nephew is in late 30s/early 40s-ish (I can't remember exactly what she said). Whenever she would have guests, she would tell them about Colin so new people would walk on the beach and immediately say "hi colin!".

I have met so many people on the beach and around town this summer who know someone with Down Syndrome. They enjoy sharing their story about their friend, family member, friend of a friend, etc. that has Down Syndrome and how much they have changed their lives.

It's a community of people. We know someone with Down Syndrome and we love someone with Down Syndrome and our lives are better because of our special ones.

We are an awesome community and I am proud to be a part of it!

Field Day

The beach community that my parents rent in is a private community that prides itself on family. They do not allow groups to rent homes and are very particular about the things you can and cannot do on the beach. Every day they have a different "activity" of some sort and Thursday mornings are field day events for the kids. They have been doing these field day events for as long as I can remember and I participated when I was a kid.

For the eight weeks that my parents have been here, we actually haven't been at the beach much on Thursday mornings because of Colin's therapy schedule. Last week was the first week that we were up there and Colin sat and watched the races. They have races for the 1 and 2 year olds, but I was honestly nervous about having Colin participate because most of them involve him needing to run. I felt guilty not having him actually participate, but he really enjoyed watching and clapping for those that did.

This week, I decided to give it a whirl. The first race was a crawling race and Colin lined up with the three other kids. In fact, he was ready to take off before they counted down and said "go"...you can see me holding on to him here because he would have "cheated" and started.

...unfortunately, this man stepped in front, but Colin led the whole crawling race until he decided to stop and watch what everyone else was doing. Instead, he finished third, but I actually had tears in my eyes!

...for the rest of the races, he was content to sit and cheer on everyone else. He wasn't quite ready for the crab race or the running race.

We did try one more race (a running race), but he did not want to walk/run even with me holding his hands. He forcefully sat himself down and then clapped for everyone else. Hey, at least my kids got team spirit! I will say though that there were other typical 2 year olds who were doing the same thing and not wanting to participate!

He DID receive ribbons for his participation AND attempts in all of the races.

It was our first attempt and I'm proud for what Colin did. I was just happy that he was so excited to watch! There is always next year and I have a feeling that once he is walking, things will be a whole lot easier!

1,000 Times Better!

Now THIS is the face we love to see!!

Colin woke up this morning looking and acting so much better than yesterday. I tip toed around him in his room until he was ready to get out of the crib and although he did not want to have his diaper changed ( a very common occurance these days), he was all smiles.

I am so happy he is feeling better today because although I love the snuggling, I hate seeing my little guy so miserable!

He definitely got his share of Mickey Mouse and Jake and the Neverland Pirates yesterday! I'm sure THAT helped him feel better!