Teeth

As I sat in the dentist (dental?) chair this morning getting my old fillings drilled out of my head, I couldn't help but think about, well, teeth.

And thinking about teeth made me think about how Dylan is in the process of cutting his very first tooth!

And thinking about Dylan's first tooth made me think about a post that I wrote over a year ago called, "The Dark Side".

I remember writing that post...remember it very well, actually. I remember the real sadness I felt in discovering the likelihood of my baby eventually growing particularly pointy teeth. Seems silly, I know, but back then, just a couple of months into our new journey of Down syndrome, it felt like one more thing that I did not want to deal with. One more thing that I was completely and utterly unprepared to deal with. I remember thinking, heck, this is one more thing that I shouldn't have to deal with, because, after all, I did not sign up for this.

At the time, my baby was 2 months old and had already seen what felt like every single doctor and specialist in Boston. Boston Childrens? Mass General? Tufts? Yep, we had appointments at all of them. My baby had been transferred to the NICU down there, had issues with red blood cells, oxygen levels and had failed multiple hearing tests on top of that. Two months after giving birth, we were on the lookout for signs of heart failure in our baby. Heart failure! Seriously? Open heart surgery was a mere two months away and I was up to my ears in medical bills, MassHealth forms, Early Intervention people, Down syndrome clinic information, "Welcome to Holland" poems that had been to sent to us from friends and family who were trying to help, pamphlets on Down syndrome, AV canal defect information...

And on top of everything else, I now had to concern myself with pointy teeth?!

It felt like yet another reminder that life wasn't going to be easy. It wasn't going to be what I had thought, what I had planned for. It was as if I had received another swift punch to the gut...a harsh reality check.

*

We have been on this journey now for almost 17 months. Dylan's first tooth has popped through and sure enough, it's as pointy as can be. Actually, it has 2 points to it. And every single time I see it, I smile, for it is a reminder of just how far I have come. Yes, in 17 months my life has changed. It hasn't been easy and it hasn't been what I had thought or planned for, and thank goodness for that. Both my eyes and my heart have been opened to a new life. A better life. The best life.

I am not denying that it was hard for us in the beginning. Digesting an unexpected diagnosis was certainly a challenge. And everything that came along with that at first was quite overwhelming - absolutely! But, we held on. I held on very tightly in the beginning and as the days went on, my grip loosend. Each day, I let a little bit go. The fear, the sadness...it was slipping away. Love was taking over and before I knew it, I had begun to open myself up fully to the experience...of Down syndrome. Of life.

Because as far as experiences go, this one is pretty awesome.

Cassidy

"Do you want to know what makes me happy?", Cassidy asked from the back seat of our car.

I peeked at her in the rear view mirror and sighed. This was probably the 312th time she had asked me this question in the span of 10 minutes.

Her answers had already included such things as: macaroni(or as she calls it "macagonis"), playing outside, eating carrots, climbing and the bath tub.

Ok, I can listen to one more answer. One more, that's all. "What's that, Hun?"

"Kissing Dylan", she answered. I craned my neck so I could smile at her. And like they've been known to do recently, each in their own car seat, arms stretched across the backseat, they were holding hands.

It's true. She adores her baby brother and really, I think she always has. From the very first day we brought him home from the NICU, she has treated him well. Like gold. She is gentle, caring and generous. She shares her best toys with him, feeds him Pediasure from his straw cup, and throws away his dirty diapers. She worries when he is upset. She wipes his spit up (seriously, she likes to!) and puts his socks back on when he pulls them off.

Oh, she's not perfect and I'm sure she gets quite frustrated at times. Jealous, even, and I do not blame her, for she has had to learn how to share. Share her time, share her parents, share her life. Not to mention, sometimes there is extra sharing that is required when you have a little brother with...well, a little something extra.

She is 3 years old and has her fair share of willful moments, of willful hours, days, even. She will fight for attention when she feels she needs some and boy does she like to test me. It is me who is tested, though. Not her brother, for there is always love for Dylan.

Last night as she plucked rice from her plate and dropped it on the floor below, she looked at me and asked, "What makes you happy, Mommy?".

I looked at her and without hesitation answered, "You.".

Lately

So, aside from sitting around writing whiny blog posts about spit up and endoscopys (pies?), I also like to take some time to have fun with my kids!

Lately, along with enjoying preschool and gymnastics class, Cassidy's big interest has been drawing. Specifically: people. She carries her Magnadoodle thing around where ever she goes, all the while asking you, me, anyone, to "surprise" her. Meaning, she wants you to draw her a picture and she will guess what it is.

(Ah, Piecey - if you thought you were out of surprises, I'm waaaaay out!)

Here is her "surprise" for me:



I knew that it was a person, that much I could see. Personally, I think she's gotten quite good at drawing them! (Ahem...that's probably due to the fact that she's had a decent amount of practice. This was noted as I walked through our house spotting ink, crayon and chalk drawn people on every possible surface: notebooks, bills laying around, printer paper, the spit up journal I've been keeping, our coffee table, driveway, stone wall...). So yes, I guessed correctly that it was a person. But I wasn't 100% right. Apparently it was a person with a lot of hair and snow, too.

~

Lately, along with growing his very first tooth(!!), Dylan has taken an interest in perfecting his army crawl, rolling like a champ, dancing in his booster seat, and learning new signs. Yesterday he began showing us the sign for eat. So far, he is most consistent with doggie, milk, eat, more and being the natural charmer that he is, he will give kisses, as well as clap and wave whenever anyone so much as smiles in his direction.

Here he is showing a few of his best signs.



So, that's what we've been up to lately. And you?

The Ol' Endoscopy...

...didn't happen. And the reason for the cancellation wasn't exactly because of poor health, either.

At around 9:30 yesterday morning, (after 3 hours of trying to distract Dylan from the fact that yes, he was indeed hungry, and unfortunately still had about 4 1/2 more hours to go before surgery time) the anesthesiologist called my house asking if I "had a few minutes?". He told me that there must have been an oversight with the scheduling as, in his opinion, given Dylan's age, heart history, and diagnosis of Ds, Dylan should have been given the first procedure time slot of the day - a surgery time of 7:30 a.m as opposed to 2 p.m. This first procedure time slot would mean a shorter fasting period, thus the chance of becoming dehydrated less likely. He said that he did not feel comfortable proceeding with Dylan's endoscopy given the circumstances. He said he's been doing "this" long enough and has seen things "that did not need to go badly, go badly and that the most important thing here was to keep Dylan safe".

I agreed.

But that doesn't change the fact that because of someone's mistakes, we have had to pay the price. We are on to surgery date number 3 now, which is scheduled for November 24Th at 7:30 a.m.

And as time continues on, and Dylan's spit up worsens, I am finding that my frustration level isn't the only thing that is increasing. My confusion level is as well. I fluctuate between wanting to just cancel the whole ordeal chalking it all up to low muscle tone, and fighting the desire to march him directly into the ER so that we can have immediate attention.

For now, though, we'll wait. We'll be patient. Again.

Dylan Ross:

- has croup again.

- has a bottom tooth (his very first one!) that is trying desperately to pop through.

- has an endoscopy procedure scheduled for 2 p.m tomorrow.


And me? I am hoping for a miracle tonight. My guess is that unless he is feeling a lot better by 2 p.m tomorrow, his endoscopy will be rescheduled. Again.


Ah, Dylan Ross.

Dylan's Heart

Exactly one year ago, at 8:30 in the morning, we handed our 4 month old baby over to his cardiovascular surgical team. Dylan was about to undergo open heart surgery.


What was meant to be a complete AV canal repair, wound up being quite a bit more complicated than everyone had anticipated. Once the surgery had begun, an additional, and extremely rare defect called an A.P Window was discovered. And thus it began. The journey of how our broken hearts were repaired.

Here is an update I wrote the day after his surgery:

Dylan's surgery began at about 8:30a.m yesterday. At around 11a.m, the Physician's Assistant came to update us as to how the surgery was progressing. She told us that the surgery was going to be a bit more complicated than they had anticipated. They had found an additional defect called an A.P Window which they did not know about until the surgery had begun. We later found out that they had never before seen an A.P window with an AV canal defect before. Never ever. Ever.


We were updated again at around 2pm and were told that the A.P Window had been closed and they were now going to begin the AV canal defect repair. She told us that because Dylan had been on the heart/lung bypass machine for so long, as well as having to be put on cardiac arrest, they were concerned that his recovery was going to be quite difficult. We were told that he was going to be sick for longer than they had originally anticipated.

At around 3:45pm we were told that the AV canal had been repaired and that he was now off the heart/lung bypass machine. She said that there was still a bit that needed to be done before we would be able to see him.


The surgeon, a genius to be sure, but yet a man of few words, came out to talk to us a couple of hours later and told us that Dylan was doing "Ok" but that his lungs were "not good".


We sat with that information for a couple more hours until the cardiologist came to talk to us. She was much more optimistic. She was exactly what we needed. We were then able to see Dylan. It was amazing...he is amazing.

I went on to write this:

My head definitely hurts, but I am telling you, my heart is so full of love for this kid. He has absolutely, positively, 100% blown me away. He is so courageous and so strong. As I was leaving today, the Physician's Assistant said, "Don't worry about Dylan. He's leading the way and I'm pretty sure he knows exactly what he's doing".

Yes, that was it. That was when my thinking began to change. When my feelings began to change. That was when my fears about Down syndrome began to fade, and my love for Dylan began to evolve into something far stronger than what I had thought possible.

My son was fighting for his life. His life that was worth living. And I was realizing that there was nothing more that I could possibly hope for, than to be a part of it. Nothing else mattered.

Dylan began to recover. His heart began to heal. And all the while, my heart was recovering and healing as well. As it turns out, mine was also in need of repair. See, after hearing my baby's diagnosis of Down syndrome, my heart broke. Not completely in two, but indeed, it was hurt. And just as Dylan's heart wasn't working properly, wasn't working to it's fullest potential, neither was mine. It needed perspective. I needed perspective.

His heart and mine. Healing together.

It has been one year since the surgery. Dylan's heart is still not perfect. If you were to look closely enough on an echocardiogram, you would see that there is still a very small hole and a mildly leaky valve. If you were to listen carefully to his heart with a stethoscope, you may hear a murmur. In Dylan's daily life, however, these issues are virtually unnoticeable. And over time, his heart is expected to heal completely. And mine? My once damaged heart? I think if you were to look very closely, or if you were to listen hard enough, you may notice that mine is also not perfect. I'd guess that a few small cracks still remain, however most days you would never know it. And I am confident that, as time goes on, like Dylan's, my heart will also make a full recovery.

For now, our major repairs are done and we are lucky. I have been given the gift of perspective and Dylan - the gift of life. And because of this, we have both found love.

Happy Heart Day, Dylan. And thank you. We are incredibly proud of you.

My Little Chicken...

and his big sister, Kitty Cat, were quite excited about celebrating Halloween this year!

Little Chicken had just recently woken up from his nap, so he was a bit, err, dazed,

but excited nonetheless. Excited and healthy.

This time last year, we were just days away from Dylan's open heart surgery. Dylan's heart needed repair. And mine? My heart was lodged tightly in my throat. But still, we celebrated...

...with My Little Jack-o-Lantern and his big sister Bunny Rabbit.