Dylan's Appointment

The Feeding Team.

For some reason, whenever I say it aloud, it reminds me of The Swat Team or something equally serious, like The CIA or something. Orrr, maybe my brain is just soggy from all of this rain and I am not capable of forming normal thoughts...

Anyway, moving on.

Two days ago we had Dylan's 12 month appointment with our semi-new pediatrician. This is the first time we've met her and I must say, I am quite impressed! She specializes in kiddos with developmental delays and truly knew her Down syndrome stuff!

I was able to explain some of our recent struggles - at length too, because Cassidy was not...errr... shall we say, "invited" to this particular appointment. I talked specifically about Dylan's reflux (did I mention that we are now on medicine #4 with no improvement?) as well as how I've been encouraged by our OT to start using Thick-It in his fluids to encourage better management (AKA - Dylan can't swallow thin liquids without gagging and choking).

The Pediatrician listened to my concerns, checked Mr. Dylan over and recommended that we see "The Feeding Team" down in Boston. She thinks, although is not absolutely certain, that Dylan may have a submucous cleft palate, thus the swallowing issues.

This Feeding Team consists of a Pulmonologist, a GI Specialist, an ENT as well as a Social Worker and a Speech and Language Pathologist. When "The Team" called me with the appointment information, they told me to plan for "at the very least - 4 hours"! Daaang!

Honestly, I am quite curious about this whole "Feeding Team" thing. I must say, I am also pretty relieved that Dylan will finally be getting such a thorough exam of this nature. I mean, who knows. Maybe there is nothing at all going on and we just have to learn to deal with swallowing and spit-up issues. But on the other hand, maybe something is going on and we can go from there.

His pediatrician also called me today with the results from Dylan's blood draw. She said that his TSH thyroid results came back slightly elevated. She said that this is pretty typical for kiddos with Down syndrome and informed me that there is nothing really to do at this point. He will be tested again at ages 1.5, 2, and 3.

SO! Whew, that's alot of medical stuff I know, but thought it may be of some interest. I'll be sure to write about "The Feeding Team" (why yes, yes I do like writing "The Feeding Team"!) after our appointment in a couple of weeks.

Moms Who Blog

A few weeks ago I was contacted by a woman, Jessica, who writes stories for a website called, Moms Who Blog. She asked me if I would be interested in talking with her about Dylan and more specifically the reasons why I started my blog. I said absolutely! The story was just published this morning.

Head on over and check it out, if you'd like. : )

The Birthday Boy

Ooh! I think I see my cake! Yay!

:gasp:

That thing looks COOL!

Hmmm. I'm used to puffs...what in the heck is this stuff?

Ahh, it's messy. Someone? Anyone? A little help, please.

Yeah meee! Birthdays are fun!

I apologize for sounding a bit self-centered here, but...well...I think I look pretty dang cute in my new Red Sox hat. Right, Mama?!

Thank you everyone for my birthday wishes! I must say, my first birthday was so much fun! : )

Dylan's First Year

In honor of Dylan's First Birthday, I put together this video montage. If you have a few minutes, we would be honored if you'd check it out.

As you all already know, we are so incredibly proud of him...and are more in love than we ever thought possible.

Dylan has truly, truly blessed our family.

Happy First Birthday, Love.

xo

Dessert and Dinner

You have got to love those bright blue two inch thick frosting covered Cookie Monster cookies from the grocery store. Doncha?!

Well...the frosting was about two inches thick until this Little One licked it all off.

So, we've got the blue mess.

How about some green and orange spray from Dylan?

I guess he wasn't too keen on the green beans and rice baby food. And I thought for sure he was a carrot guy, but found that even those didn't stand a chance, for tonight he was far more interested in spraying his dinner.


Ah, dessert and dinner time. So colorful.

Thoughts...

As Dylan's first birthday approaches, I am finding that there are many emotions and memories that are coming along with it.

When I awake in the middle of the night, I can't help but remember...

I remember, so clearly, the way that I felt when I was first told, 5 hours after Dylan was born, that he was "showing possible signs of Down syndrome". I remember the disbelief. The fear.

I remember coming back home from the hospital, about 14 hours after we had left, on June 28th. Our first night without Dylan and feeling like I had been horribly betrayed. Thinking that the Dylan who was lying in the NICU was not my Dylan. Not the Dylan who I had planned for.

When Dylan's test results came back a few days after his birth, it was confirmed that he did indeed have Trisomy 21. I remember how two doctors came to find us in the NICU to tell us this. This as well as the fact that "adoption was certainly an option".

I remember sitting at my desk, in tears, writing this post back in September. I was still so scared. So uncomfortable and overwhelmed with the idea of Down syndrome.

I remember open heart surgery. I remember watching Dylan recover.

Then...as Days with Dylan continued on, I watched him grow well and thrive, all the while, without even realizing, I began feeling less and less afraid and more and more in love.

I read something on babycenter recently that rang so completely true for me. It went like this:
I heard someone describe the diagnosis of your child as having Down syndrome is like a loud band playing in your head - it's all you can think about. And, as time goes on, the music gets softer and softer until one day you realize that at some point the band had stopped playing and you don't think about Ds anymore.

I know that we are only at the beginning of this journey, but I can't help but be amazed with how far we've already come.

I just wish...

I wish I had known then, what I know now.

Allergies. Thick-It? And reflux...again.

*Warning - I am attempting to type this while Dora plays, quite loudly, on our TV in the background. (I've tried many times to turn down the volume, but Cassidy insists that she can't hear it.) I am also suffering from 'serious cloudy head' as I have finally broken down and taken something for my allergies. In other words, this post may not make any sense.

Anyway...

The other day when Dylan's OT was here, we attempted to use the Honey Bear Cup. See, I had noticed this before, but it was especially obvious this time with the cup, that Dylan has a really difficult time managing thin liquids. It's as if he swallows way too quickly, which then startles him and makes him gag and choke. His OT recommended that we start using Thick-It in his liquids so that he is able to manage the fluid more successfully. Does anyone have any experience with this? I hadn't heard of it before, so I'm not entirely sure what the deal is with this stuff. I think I'm willing to try it, though, as one of our goals right now is to help Dylan learn how to drink from...something. Anything. Ahem.

~

I also have another quick question about reflux. Ah, reflux. You may remember that we are currently on reflux med #3. We started with Zantac, then Prevacid, now Axid. I am bummed to say that Dylan is definitely spitting up more now than ever before. Very frustrating. So, I guess my question is - are these reflux meds suppose to stop the spitting up issues? Or are they just suppose to ease the discomfort of the acid? Maybe I'm just expecting too much from a medicine? I don't know. But obviously this one is, by far, the least effective. I put a call into Dylan's GI doctor two days ago, but naturally haven't heard back. What should I expect from a reflux med? I'm tired of spit-up. I really am. Blech.

Thank you for reading. I'm going back into my allergy medicine induced cloud now.