Thursday, January 28, 2010

Ordinary Moment

Tonight, as I watched Cassidy and Dylan on the couch together, I felt my heart catch and I paused...

There they were. Sitting together, drinking their milk, and reading a book.

It was such an ordinary moment.

But yet felt wonderfully significant to me.

Friday, January 22, 2010


Yes or no?

A couple of months ago, Dylan's PT mentioned the possibility of him needing orthotics. She told me about the benefits of Sure Steps . Does anyone have any experience with these?

Last week, I called the orthotist she had recommended to make an appointment. It can't just be that easy, though, c'mon! As it turns out, before we can see them, I need to have a prescription from Dylan's pediatrician faxed over there that says something along the lines of "please evaluate Dylan for orthotic need".

It sounded simple enough to me. Yeah. Not so much.

For whatever reason, Dylan's pediatrician will not do that, so I had to make an appointment with an orthopedic doctor. Doesn't sound like that big of a deal, I know, but unfortunately the soonest appointment they have is at the end of March. And this is all for an evaluation! I don't even know if Dylan even needs orthotics at this point. Gr.

So, I was telling my friend this story (Hi Michelle! : ) and she gave me some interesting information. She had just been to the Down syndrome Clinic in Boston that day with her little guy and had specifically asked the PT there about orthotics. Her take on it is that it's actually more beneficial for most of our little ones to not use orthotics, but rather go barefoot for as much time as possible, thus strengthening the muscles naturally and encouraging proper foot placement.

This makes sense to me. It seems to be kind of along the same lines as my running shoe philosophy - using minimally cushioned running shoes to make one's foot placement more efficient.

But as I usually say, "What do I know?!".

Does anyone have any thoughts on orthotics? Does your Little One use them? Are they helpful? Necessary?

Thanks so much! : )

Friday, January 15, 2010

Can I get a YEAH?!!

Look what Dylan learned how to do yesterday:

Oh, it was sooo worth the wait...

YEAH for self-feeding!!

Wednesday, January 13, 2010

That Night

It was sometime in July, I think. July of '09.

6 months ago...

That was the last time I cried hard about Down syndrome.

I remember there were a bunch of us there that night. We were all sitting around the kitchen table eating dinner. All of a sudden, out of nowhere, the "R" word was casually dropped and just as quickly, my heart shattered - not just because of that, but that most certainly must have been a trigger. I put my fork down, forced myself to swallow what was lodged in my throat, and excused myself from the table. I went into the bathroom, braced myself on the sink and looked in the mirror. I told myself to breathe. Please just breathe. In and out. Shh. It's ok, it's ok.

I splashed water on my face and went back to the table. I said nothing, nothing! and pretended that everything really was ok. I pretended until I couldn't anymore and instead went up to bed.

Oh, I can remember just how hard I cried that night. I think it may have been the hardest I had ever cried in the name of Down syndrome. I felt worse that night than I did the day we had heard Dylan's diagnosis confirmed. I cried because I was sad, of course. But I now know that I was also extremely afraid, vulnerable, uncertain, and I was angry.

It was as if I had suddenly known that things were going to be different.

Earlier that day, on the beach, Cassidy had me in hysterics - she had busted my chops about something and we couldn't stop laughing about it. I remember hugging her so tightly, while laughing, and saying, "Oh Cass!! I just love you so much!". That night, I cried because I did not know what kind of relationship Dylan and I would have. What would it be like when he was 3? Surely he wouldn't be able to joke around with me in the way that Cass did? Would he even be speaking by then? Walking? Oh, it hurt to think about...

Also earlier that day, there was a young woman on the beach who had Down syndrome. I couldn't stop looking at her and thinking how surreal it all was that some day, Dylan was going to be a young man with Down syndrome. I couldn't picture it. How was it possible?

I cried that night because truly, I was a terrible advocate, and I knew it. I was horrified with myself - disgusted that I did not say anything in response to the "R" bomb that was so casually dropped in front of Dave and me. Yes, confrontation is very uncomfortable for me, but why couldn't I suck it up for my child? Why didn't I open my mouth and explain how the use of the word "retarded" in regards to making fun of someone, is not funny - how, as a matter of fact, it is offensive to my baby, my sweet baby who was asleep upstairs.

Oh, I cried because it all seemed to fall on me at once - this new reality. I was the mama of a child with Down syndrome. Oh. My. Gosh.


That was the last time I cried like that - the last time I felt like that. I think I've had small twinges every now and then, but nothing of that magnitude. And I am sure that there will come a time again, where I will cry more tears in the name of Down syndrome, but oh how I hope the pain isn't ever that severe. I can't imagine it ever will be, though. Seeing Dylan now...he makes me so happy. He makes my life...better. And I should think that that's more than enough for me...

Really, what more can one want? Besides happiness...and love...

Friday, January 8, 2010

Funny Face


He has quite the sense of humor, let me tell you. Lately, every time we ask him, "Can you show us your funny face?", or even if we casually mention the words "funny" and "face" he will look at us like this:

The picture doesn't quite do it justice, but oh, it cracks us all up every single time!

And he totally knows it, too.

Wednesday, January 6, 2010

Baby Food Blues

Well, the good news is that in 3 months, Dylan has gained over 2 pounds. The bad news is that we are averaging about 9 jars of baby food a day now.

Ever since Dylan's endoscopy results revealed the likelihood of Celiac Disease, we have stopped all things gluten. It wasn't exactly a difficult transition, considering the fact that Dylan eats primarily baby food. (It was the cross contaminated oats and multi-grains I was using to thicken his baby food that did him in, I think). He is not, shall we say, a fan of anything containing the possibility of a lump. And putting small pieces of food on his tray? Yes, that results in more food for the dogs as all things go flying as soon as they are within reach.

I have tried using a food processor with healthy gluten-free meals that Dave and I have eaten, I have tried to blend gluten-free pasta, potatoes, eggs, etc. As soon as he sees something odd on his spoon, he proceeds to swat it out of my hand. He will smack his head against the back of his seat and will yell out in frustration. After trying this for weeks and weeks and weeks, I'm beginning to think that this may not be our best route.

My new and improved plan is to thicken some of his baby food meals with mashed potatoes. I mean, really really mashed. As in, barely any lumps at all. That way, I figured, by adding butter and cheese we would be filling him up (fewer jars of baby food), while also getting him used to a semi-different texture.

Yeah. Not so much.

He pulls the same business with me, but will accept the food from Dave. It's the strangest thing! Dave can feed him these heaping messy bites of mashed potatoes and baby food without a hitch. As soon as I try with my small, neat, equal amounts of half baby food, half potato, Dylan will yell, turn his face away, swat the spoon out of my hand and throw his head back.

What gives?


His pediatrician is not concerned with the fact that he is still eating mostly baby food. She said that it is going to take time, but that I should still attempt my mashed potato idea as well as put finger foods on his tray at every meal.

So, that's what I'll do. But in the meantime, sheesh. I'm going to have to start wearing a shield or something...