Rockin' the Scar

Today as I waited to pick up my lunch order from Nopalitos, I noticed a father with his teenage son who has Ds. They were finishing up their lunch - actually, the dad was trying to get his son to eat a few more bites of the bean and cheese nachos he'd only eaten 1/3 of.

I was in everybody's way (both because it was packed and because I wanted to watch the dad and his boy). I know the boy thought I was staring at him. 

Ok. I sort of was. But I was trying to be subtle about it, ya know?

I could feel that nervous pit in my stomach. I really wanted to say hi. But am I rude for interrupting their lunch (yeah, a little, but the dad was done eating and was fighting a losing battle against a teenager who didn't want to eat any more pinto beans).

Three or four times I almost got up the courage to go over there. What the heck would I say? "Hi, my name is Lisa and my son has Ds, too"???? Yeeeeahhhhh, that didn't really work out for me last time, remember?

The dad clearly noticed that I was eying them up. He mouthed to me, "we're almost done here," as he pointed at their table. GULP. Here we go...

I walked over to his table and leaned over and said, "Hi, my name is Lisa. What's your name?" Um, yeah, that's not weird at all, Lisa... he looked at me a little shocked (I don't blame him), told me his name, and shook my hand.

"Well, I just wanted to say hi because I have a 19-month-old son who has Ds."

And then came the smile. You know the one.

I love that smile.

Turns out, they're not local. They are from Chico (about 2 hours from Sacramento) and they come here to visit the boy's cardiologist every 2 years and always eat at Nopalitos afterwards. Why do they visit the cardiologist, you ask? As routine follow-up to the open-heart surgery he had at 6 months old.

Get out!

And he goes to the same cardiology group Sheridan sees...

I, of course, told him that we just found out that Sheridan will need surgery. I didn't even say another word and the dad looked at me and said, "I know you feel like you are going through hell. I know how hard it is and how scary it is. But after this, everything is a piece of cake. Trust me."

He told me about how scary it was for him and his wife. Especially the sight of him after surgery (he said nothing can fully prepare you to see your child with tubes and wires sticking out of them, even if they don't really look "bad"). He said going home with their son 9 days after surgery was the scariest part because they lived 2 hours away and they were worried ("he had staples keeping the incision closed and then one day they just took them out and put some tape for the wound - how they hell does that seem safe?!"). But he insisted, "just remember, they won't let your son go home if he's not ready, so if they let him go home, just know that he's really doing well."

Anyway, we talked a bit more about surgery - he pretty much just told me to fix Sheridan's heart and know that everything will be ok. He also told me that even though it was scary at the time, he doesn't even remember much about those 9 days in the hospital. He said the thing he remembers most was eating lunch at Nopalitos every day!

We talked a little more small talk before my food was ready. They have 4 children - the 14-year-old with Ds is their oldest. Etc. He was so nice. And just kept telling me that once I'm on the other side I'll wonder why I was so scared.

His son finished his nachos. And laughed when his dad teased him, "I thought you said you were full."

I left with a huge smile on my face.

As I got in the car and was ready to start my car, I looked up and the dad was chasing after me. Flagging me down. I opened my car door.

"The moment you left my son raised up his sweatshirt and showed off his scar. Would you like to see his scar?"

I almost cried - he had to know. He just had to know.

"Yes. Please. If that's okay. I would really like that if he's willing."

He shyly came around the corner, and then not-so-shyly put his sweatshirt up over his face to reveal his entire scar.

It was big. But it wasn't a big deal. Ya know?

His dad pointed out the other 2 small scars where the drainage tubes were. He mentioned that they were surprised that the scar got so big (it was only a 3-inch incision when he was 6 months old), but of course it makes sense that it grew over time with him.

So I joked with his son, "I bet the girls like your scar." He totally blushed and looked down at the ground. I didn't mean to embarrass him in front of his dad :)

He golfs, plays basketball, and swims in the special olympics. His dad said he likes to walk around with no shirt so he can show off his scar.

Sheridan's gonna rock his scar one day. Just like this teenager.

I went home and ate the best bean and cheese nachos I've ever had.

Up Syndrome

I can't wait for this arrive from Netflix! Watch Up Syndrome trailer here.

Sending Them There and Back with Love (and an Afghan!)

We had a fabulous playdate this morning (despite the lack of sun and the very chilly weather) to send Jen off with love... she leaves in NINE DAYS to begin the final leg of Sofia's adoption in her home country!!!

So, we just wanted to have one final Playdate BS (Before Sofia) before Jen leaves... and to give her a gift that our little ones created for Sofia.

Sheridan shared his scooper with Ainsley...

Then Annelies joined the group...

And, of course, our good buddy John Michael was there - he was all over the place. And he even gave me knuckles and called me "doo" (Dude)!

Joey showed me his "clappy hands"

Sheridan pretty much just enjoyed chillin' near the sandbox all morning.

John Michael and Sheridan stood at the bench and ate a snack... correction: John Michael ate a snack. See that lone goldfish in Sheridan's hand? I think he's trying to hide it from JM :)

Look at our boys growing up!

Of course, no playdate is complete with our rainbow blanket. We bring this to EVERY playdate. It's become our signature photo-op backdrop. Joaquin spent sometime hangin' out somewhere between doin' yoga and standing up...

The really cool thing is that our group is growing so quickly - we've nearly outgrown the rainbow blanket! And this isn't even HALF of our total group! Oh, say hi to Cristian at the back of the blanket there :)

And a new family came... little 4-month-old Lance met his new buddies for the first time.

And little Delilah Rose was there - here she is with honorary auntie Cori...

and sleeping on her mama.

Sheridan eventually found all of Joaquin's snacks, including his watermelon.

Did he eat it? Nah. He just wanted to stack it. Over and over again.

This is proof that even though he won't stack your boring 1-inch blocks during your evaluation, he will stack the heck out of everything else.

See how proud he is of himself?

And now for Sofia's gift... an afghan of her own! Made with love (as always!) by the fabulous, wonderful, amazing CJ. (a big thank you for pulling off the second afghan I've requested as a surprise!)

I asked each child to choose a color to "give" to Sofia and why they contributed it to her afghan. You'll have to check out Jen's post to see the details :)  But I know we did a good job when Jen cried :)

It was a great morning! And I'm so excited that the next time I see this afghan it will be cuddled around MISS SOFIA!!!!!!!

Pre-order "I'm Down With You" and Support the DSIA!

Pre-order your signed copy of I'm Down with You for a special price of $19.95 (regular price $29.95)‏, and help raise money for the Down Syndrome Information Alliance!

All profits from sales of the book on this pre-order website (and from the author's royalties!) will be donated to organizations that support all aspects of the Down syndrome community. From sales on this site, they will donate a minimum of $5.00 per book. They compiled a list to select from, which will allow you to direct money from your book purchase directly to the DSIA!

Please enter "Down Syndrome Information Alliance" to direct your support to the DSIA when making the purchase on the website!

Learn more about I'm Down with You.

The more pre-orders, the lower the cost of printing, and the more money that can be donated with each book purchased. Pre-orders will also help with funding the continued effort of creating the documentary.

The book will ship in August!

Chics Dig Scars... Right?

I've written about Sheridan's heart previously.

And... it happened.

Sheridan's cardiologist is recommending surgery. Of the open-heart variety.

This sucks.

I knew this day would likely come... I was actually pretty okay with the news in the examination room. I know all the reasons why this is the right move. Why this is necessary. How it will help Sheridan. It's all about doing what is best for him in the long run.

But then I look at him.

And I get teary.

I know the surgeons are skilled. That's not the issue.

I know the procedure is wildly successful and very common. That's not the issue.

I know Sheridan will reap heaps of benefit from the surgery. That's not the issue either.

It's his heart, you know? His heart.

And somebody is going to take my baby out of my arms. Cut him open. Stop his heart.

And they'll repair it. In an instant he'll be fixed... and then the healing begins. Lots of healing.

I know Sheridan is strong, healthy, resilient. He's such a hard worker. I never doubt his ability. I never doubt his strength. He amazes me every day.

So what the heck am I so sad about? Sometimes I get frustrated that this scares me.

Perhaps it's that from the moment he is taken from my arms, I'm no longer the one in control (um, yeah, control freak much?). I don't want anybody doing anything to him. But they're not doing anything to him... they are helping him. In a way, helping us save his life down the road by preventing long-term issues that could have profound and devastating effects when he's older.

I know I'm definitely scared of the risk of infection. That's the hardest sentence to write out loud... like even saying it is bad luck. Ugh. I don't like this paragraph so I'm moving on...

And the scar... I just love his perfect little chest. But it will still be perfect.

And I've seen first hand how Gabby came through the same surgery like a TROOPER. Seriously. That girl never lost her fire or spunk. 

Bottom line, although Sheridan's defects are small, they are not making the progress one would expect to see if they are going to close on their own. We could certainly wait another year/year-and-a-half, but it is highly unlikely the extra time will make a difference for the VSD (the others rarely, RARELY close on their own). We've always walked the tightrope of waiting to see what happens (just monitoring it like we have been and hoping the holes close), but also recognized that at some point we risk long-term health consequences. At what point do we say, "Ok, we're now at the point where waiting brings diminishing returns and might result in negative consequences down the line"?

Well, we've reached that point.

On average, the rule of thumb is that if these holes haven't closed by 3 years old, surgery is the answer. We could certainly wait until he's 3, but given there is little improvement (and certainly not what would be expected if the holes were to close on their own) - meaning chances are slim they would close on their own - it's better to close the holes sooner rather than later. Also, I don't want to wait until Sheridan is 3 going into preschool. He'd have to miss 2-3 months likely, and although that wouldn't impact most typically-developing children, that's HUGE for Sheridan. I don't want it to impact his transition to preschool and learning with/from all of his peers.

Right now, we have no timeline. The cardiologist (whom I ADORE by the way - okay, I'll admit he's also very good looking so that doesn't hurt) is bringing Sheridan's case to the surgical team for review. He'll present Sheridan's case this week or next and get back to me in the next couple weeks with the result.

All in all, I'm really okay with it. I am. Truly. My head is totally in the game. It's just taking me a while to feel okay with it.

Besides... some chics really dig guys with scars, right?

True Love

These images were taken by our good friend Penny when Sheridan was just 8 months old... they are two of the most beautiful images I've ever seen of love.

IFSP, SureSteps, and Birthday Planning, Oh My!

IFSP

We had Sheridan's 18-month IFSP a couple weeks back. Funny thing is that I typically spend a TON of time getting ready for it, prepping, etc. and this time I simply put our list of goals together for each area of development we're working on and that was it. I always share his goals a couple weeks in advance with his therapists so that we can develop his final IFSP goals together - and I always send them to his service coordinator, too, so they become an official part of our IFSP. It's an approach that works well because then the service providers know what we are prioritizing, they can talk to us about what modifications we might want to consider to his goals, etc.

We weren't looking to add any new therapies (he already has everything he needs between our regional center and private pay services - a.k.a. music therapy). It was actually a relaxed, fine meeting. I did request that the regional center cover a therapy that we are private paying for (the law changed in August 2009 and music therapy is no longer covered except under special circumstances - we believe that Sheridan's group music sessions are critical to his social-emotional development... they are truly the one thing that is making a difference in Sheridan's ability to interact and be around other children). This brought me to tears y'all - Sheridan has come a long way, but still has a LOOOOOOONG way to go. This is critically important to his development... right now we're focused on preschool in 17 months and he's building the skills he needs to be able to participate fully in preschool and other activities with his peers.

We  knew our request would be denied - indeed, we heard back from the regional center supervisors that they would not cover it because it is an "experimental therapy" and as such we had no recourse (we cannot appeal the decision and take it to due process. We knew this would happen, but we felt it was important to send the message that this is a valuable service. And I'm not exaggerating here, folks... our weekly group music sessions have truly been the key to helping Sheridan work on being around other kids.


SureSteps

A few weeks ago Sheridan was fitted for SureSteps.

Different people have different philosophies about using orthotics, but here's where we are:

• all babies/toddlers develop (standing and walking) with overpronation; it typically peaks around 3 years of age and then they develop out of it and have normal pronation
• children with low tone and/or lax ligaments (obviously, that includes children with Ds) might not peak until (much) later; also, they might not "come out of it" without assistance
• notice I said "might not" - not that they "will not" :)
• if a child develops a problem with overpronation, it requires correction
• if, however, a child uses orthotics you can do a great deal to prevent the later overpronation issues (and, after talking with Sheridan's PT about this, she said it is easier to prevent these problems than try to fix them later)
• so, even though there is no certainty that Sheridan would develop overpronation issues, we decided we would use SureSteps to prevent a potential issues rather than risking being in a situation to have to fix it
• my only worry was whether or not he would become dependent on them - every PT I've talked to about them said that children typically don't have issues transitioning out of them

So, Sheridan got fitted and he's been wearing them every day. Don't get me wrong, his standing and cruising was coming along nicely, but it's nice to know he is getting the support and proprioceptive feedback he needs to be even more successful. Check out his new digs (they are available in lots of different patterns/colors, but Sheridan is such a fashion plate that I chose something that wouldn't "clash" with his cute clothes :)

The Big 2

Although my and Gary's birthdays are coming up first, I'm already focused on Sheridan's in August. LOL. Not that I'm planning some major toddler extravaganza :)  it's just that I know the last couple weeks of August are busy for so many families. Summer days and weekends fill up fast. And then families turn their attention to getting ready for school or the last summer vacation. So, I'm trying to at least get a sense of what I'm planning (which I'm sooooo close on!) - and more importantly the date - so I can ask Sheridan's buddies to save the date. You know who you are :)