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.

I think...

...this is one of those things that was way more exciting in person. As a matter of fact, I know it is. Ah well. I'm going to share it anyway, so please pretend to be excited. : )

So, yesterday Dylan and Cassidy were finishing up their dinners (Dylan - Stage 2 "Harvest Squash Dinner" and Cassidy - Macaroni and cheese, cucumbers) and I decided, as I sometimes do, to put a few puffs on Dylan's tray. Usually, he will look at them and proceed to push them on to the floor. But this time, he picked one up, attempted to put it in his mouth, came oh so close but missed and it wound up on his lap. I clapped and cheered for him and he tried it again. Success!! Sure as could be, he picked up a puff (not with the pincer grasp quite yet) and put it right into his mouth!! YEAH! His first success with self-feeding!

OH! That reminds me...

I finally ordered the ol' Honey Bear Cup from BeyondPlay.com. When it arrived in the mail, I opened it and immediately thought two things: 1. Ah, I really hope this thing works! and 2. I can not believe this tiny little plastic thingy costs $8.95 plus $7.95 for shipping.

Ok, so maybe it wasn't in that exact order, but still...

We'll try the honey bear cup today and continue on with the puffs. Maybe even try a teething biscuit or two. Small steps...but progress is progress, I say.

We were wondering...

...if you happened to have four minutes to spare?

You do? Oh good!

Check out this video . I saw it on Praying For Parker and wanted to share it all with you!

Two Words

Independent

Sitter

!!!!!

Thank you!

I really appreciate all of your responses to my post the other day about my achin' back and our bath time woes. After looking through the comments, I decided to order this bath seat from Amazon.com. I placed the order on Friday and I swear to you, the thing was sitting on my front porch on Saturday afternoon!? Sheesh, that must have been the fastest order and delivery ever!

We decided to try the seat out tonight. It started out quite well as Dylan was in good control and sat up straight and tall.


However, I noticed that as the water got deeper, our little friend got slouchier and slouchier (hm...is "slouchier" even a word?).

I think I'll need to get some non-slip stuff for the bottom. But otherwise, everything went very well!! Thank you again for your suggestions!

And completely off-topic...

I took this picture of Dylan today while at the zoo. Ah. There is just something about it that makes me want to pick him right up and give him a big hug. And a smooch. Or two.


Wow. I love this boy.

A post that was suppose to be about reflux meds...

...but as I continued to type, has turned into something different.

So...we had yet another appointment with Dylan's GI Specialist this morning. I'm not sure if you remember, but beginning around 5 months of age, we noticed that Dylan appeared to be struggling quite a bit with reflux. He was originally prescribed Zantac, but besides the fact that it tasted horribly, it also wasn't working very well. Sooo, a couple of months ago, we switched to Prevacid. Along with that costing us $100 a month, it also wasn't working very well. Today we were prescribed Axid. Third time's a charm? We shall see.

Now, I also tried to talk with the Doctor about the possibility of something more serious going on. See, my friend, Angela has mentioned to me that Dylan's symptoms (the extreme arching!) remind her so much of her son Benjamin's. After an X-ray was taken, it was found that Benjamin had duodenal atresia and had to have surgery to repair it. And since the surgery, he has been doing very well.

I was interested in hearing the doctor's thoughts on that, however, our conversation was very short lived as Cassidy decided that she was no longer interested in this doctor's appointment. At all. In fact, she wanted out NOW! She proceeded to open the office door, run down the hallway, open another door, run into the waiting room all while screaming and crying, "I don't want to do this! I want to go HOME! Now please Mommy! HOME!". Um. Seriously? I don't know if it's that this is naturally a difficult age (2.5) or if it's that she is particularly ah, how should I say this, "highly spirited" or "willful" if you will? But whatever it is, it's challenging to say the least.

I was frustrated this morning, as I feel I should have been. I was discouraged. You know what else I was? I was completely mortified. I was that Mom. The one who very obviously could not control her child.

As we were driving home, I peeked in the rear view mirror and looked at Cass. I thought my heart was going to break into a million pieces...gosh, I couldn't help but feel quite badly for her, actually. So much of her life revolves around Dylan. Dylan and his many many appointments. Dylan and his Early Intervention people. I feel guilty. I feel like I'm not doing a good enough job with her. I can't be, otherwise she wouldn't be acting this way. I want to do better, I do. But yet I don't know what I'm doing wrong. And that...that bums me out.

It's that balance. The balance between two children. The balance between fun and therapy. The balance between friend and Mother. I feel like I am always trying to find that balance.

Any ideas?

So, I'm pretty sure my back is trying to tell me something. And I really don't think that it's all too happy with me after that day I decided to not bring Dylan's stroller and instead opted to carry him all over Boston Children's Hospital in his car seat. My biggest back struggles right now are with bath time. See, I have been using something like this, but rather than using the whole baby tub, I've been using only the mesh incline thingamajig. This way, I can put both kiddos in the bath at the same time. But now that Dylan is getting bigger and stronger, and yet isn't quite sitting on his own, it's been creating some seriously tough times on the ol' back.

Any suggestions for me? What am I missing here? I really don't want to have to spend lots of money either, as I feel like Dylan is getting sooo close to being able to sit independently. In fact, when I lie him on the mesh thing, he tries desperately to sit upright - which would be cool and all except for the fact that he is still far too wobbly (and archy!) and the bottom of the tub is far too slippery for him to practice his skills at this time. So, combine all the bath time factors (leaning over the tub because of the mesh thing, holding D down so that he doesn't roll into the water, trying to keep Cassidy off of her baby brother as she tries to pour water on his head), and you get a hurt back.

Oh! Speaking of the Little Guy and his sitting efforts, I took these two pictures yesterday while he was working with his OT.

Check him out!! He is now able to sit independently for stretches of about 3-5 seconds...and even longer if he's in the right mood.

He has also been making some nice progress while on his tummy. This is the kid who absolutely despised tummy time for the first, oh, 10 months or so of his life. Now, he actually enjoys it and will spend a good amount of time hanging out like this:

Hmm...makes me wonder if he'll crawl before he sits? Kind of like how he is getting his top teeth before his bottom?

Ah well...as Cassidy likes to say, "Oh Dylan! You silly guy!".

Check these out!

Just wanted to take a break from sneezing my head off (due to serious amounts of pollen flying around in the air), and share a couple of wonderful links with you.

1. This first one is great new site developed by a dad of a little guy, Ozzie, with Down syndrome. His name is Dan and the site is called Down Town Ds. You may find it here: http://downtownds.com/ as well as on my side bar. There is a TON of information as well as message boards, his personal blog etc. Go and take a look.

2. Also, the other day I was looking at some beautiful photos by Conny Wenk and discovered that she has added another blog called A Little Extra. This blog shares gorgeous photographs of kiddos and adults specifically with Down syndrome. Check it out...it will make your day.

Back to my sneezing now...don't mind me.