He is growing up...

...and is simply...

...the best little guy in the world.

With the guidance of his loving big sister.

Lots-o-oscopies

Remember my post about The Feeding Team? Well, we had that appointment today and are now scheduled for lots-o-oscopies. Also, I should clarify, as the appointment carried on, I learned that it wasn't so much a "Feeding Team" but rather more of a "Pediatric Airway/Swallowing/Voice Center" which really, when you think about it, sounds way more impressive than the Feeding Team anyway...

Sooo...

We met with a GI doctor first. Now, this is a different GI doctor than who we usually see, so I had to give him Dylan's whole reflux history. After hearing me talk (err complain) about the 4 different medications that we've tried thus far, he believes that going back to Prevacid is the way to go. He will try to work with our insurance company to get them to pay for part of the cost, as it's quite pricey. I am willing to try this again, as looking back, it seems to have been the most effective. (Read: At least with Prevacid I didn't get spit-up on over 20 times a day. Seriously.).

Next was the Pulmonologist, then the ENT doctor, and lastly the Speech Pathologist.

After meeting with each doctor and discussing the main concerns I have with Dylan, namely his difficulties with swallowing thin liquids (and everything that has been going on with that), in addition to the reflux, it was recommended that we have a swallow study done. While I am all for this idea, I must admit that we do have a small problem: that being the fact that Dylan has still not had much success with drinking from a sippy cup...or from anything for that matter. We were instructed to mix half applesauce/half water in a sippy cup (or half formula/half YoBaby), take out the valve, and just keep trying and trying and trying. And we have less than two weeks for Dylan to get the hang of it. Hm...

It was also recommended that Dylan heads back to Boston for a "surgical procedure". Namely, an endoscopy (for his stomach and digestive system), a flexible bronchoscopy and a rigid bronchoscopy (for his throat, airway and lungs). He will need to fast and will be put under general anesthesia for this procedure.

Ugh. I have mixed emotions about this, I think. On one hand, I feel quite positive that we are moving forward. I really am. Maybe they will find a problem and will be able to fix it. Yet, on the other hand, there is certainly a large possibility that there is nothing at all amiss with my little guy...and that I will have put him through all of this for nothing. Maybe I should "wait and see". And hope that he grows out of it.

But how do you choose?

Gosh. Am I missing something? I just wish so badly that I had this super-strong Mother's Instinct or Intuition...or whatever it's called. That way I would know for sure that I'm doing the right thing here.

A Week

So...we decided a change of scenery, a dose of Cape Cod, for the week would do us all some good. And wouldn't you know, the sun actually decided to shine on us for a bit?

And the scenery...it's not too shabby, eh?

Dylan quite enjoyed himself, I would say.

And Cassidy discovered not only the delicious-ness of Chocolate Mousse Ice cream with jimmies and M&Ms, but also the joy of being allowed to eat three Popsicles for lunch...because we are on vacation after all.

Dylan replaced his old favorite skill of clapping, with that of waving.

Ah, it was a wonderful week filled with treasured memories. Great food, frosty beverages. Helpful hands. Trips to The Aquarium, The Museum, the playground. Laughter and tears.


And sand...lots and lots of sand.

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