Monday, November 30, 2009
The weather was dreadful and has been for a while now, it seems. Dark. Wet. Rainy all day. We have been completely off our usual schedule lately with Dylan's appointment last week, Thanksgiving, family gatherings.
I felt tired today, but I don't think I am. At least I don't think I should be.
Oh, I attempted an effort today, but quite honestly, it was pretty weak. Come to think of it, did I even take my slippers off? Briefly I'd bet - yes, when I brought Cassidy to get her much needed hair cut.
It's not that our house is dirty necessarily, but then again, it certainly isn't clean, either. I mopped the floors and vacuumed the rugs. The coffee table is relatively shiny. I paid a couple of bills.
I played Pretty Pretty Princess (jealous Piecy?), Memory, "Fishy Game", and read piles of books to both Cassidy and Dylan. We had an EI appointment. We listened to the "Cass cds" and danced around the house. We played tea party and dress up (Cass did the dressing up naturally!).
Cass did spend a good chunk of time with her paci in her mouth watching her new Max ansd Ruby dvds. Dylan napped alot.
Toys were strewn about everywhere and the dog hair...ugh...each a losing battle, I think. Our bathroom trash barrels remained full all day. I thought about emptying them, but I didn't. There is dirty laundry in the washing machine and clutter in the kitchen. If you look closely (or maybe not so closely), you will see that it is dusty upstairs. Garland is wrapped around our porch columns while our rotting Halloween pumpkins sit below. Holiday lights are in clumps on the kitchen floor, waiting to be hung up. Our unmatching (that's not a word, is it?) Christmas stockings are stuffed in a grocery bag on our dining room table.
Come to think of it, I have one plant in my house. One. And it's barely alive. I do not know how to "do" Cassidy's hair. I, along with my kids, spend the majority of our time in sweatpants. And fleece. I don't cook (as I was reminded by Cassidy tonight) nor do I bake.
I am a stay at home mom, but I'm not so certain that I'm any good at it.
One thing I can say with absolute certainty, though, is that I love my kids. Ah, do I love them!
I love how today Cassidy turned to me, after getting hit by our dog's tail, and said, "Bailey just wagged me". How she must have asked me no fewer than 300,000 questions today about everything from, "Why do we have 2 noses?" (I explained that it's actually one nose but 2 nostrils) to "Why did Dylan do a big poopoo in the bath last night?" (Wasn't too sure how to answer that one, honestly). I love how she told me repeatedly that she loves me. Especially when she knew that I was losing my patience.
I love how today Dylan learned yet another sign - "bath". I also discovered that apparently he has been secretly growing another tooth (a molar?!). I realized this when he grabbed my finger and shoved it in his mouth and proceeded to crunch down. (Another sharp little bugger!) I love how today he rolled around our living room floor, then army crawled up to his little karaoke toy and smacked the button down starting the music so that he could "dance" on his belly.
Mediocrity. It's my issue, then, as I don't suspect my kids notice. Don't think they care, either.
But, I know. And because of that, I want to do better. I think that I can do better...
Tuesday, November 24, 2009
And you know, for someone who was woken up before the crack of dawn, Dylan sure was quite the trooper! Here he is in his wee hospital gown prior to the procedure.
The procedure itself went well. Dylan tolerated it appropriately, handling both the anesthesia as well as the biopsies just fine.
It did take him a bit of time to wake up after the procedure and we were warned that when he did awake, he would probably be quite cranky.
Hm, not so much. He blinked his eyes, looked around and snuggled right into my arms. Ahhh, he's the best.
As for the results: In a copy of the report it states that "patchy mild mucosal abnormalities characterized by pale discoloration in a linear arrangement as well as texture changes were found in both the duodenal bulb as well as in the 3rd part of the duodenum. Biopsies were taken with cold forceps for histology".
Ok, so basically what this all means is that there were some abnormalities found which, according the the GI doctor, are most likely consistent with Celiac Disease. If it is not Celiac, it may be esophagitis or someotheritis (that I can't remember right now). It may also be nothing. The only way to know for sure is to wait for the results of the biopsies, which typically take about 5-7 days to come back.
So, for now, we wait. Aaaagain. But this time, at least we may have something to go on.
Thank you so much for all of your positive thoughts. We really appreciate it!!
Monday, November 23, 2009
We are scheduled for the first surgery of the day, thus requiring us to be at the hospital no later than 6:30 tomorrow morning.
While this may seem like peanuts compared to having gone through open heart surgery, I'm still quite nervous for my little guy. Ahh, I don't think it's ever easy watching your kiddo go through any kind of surgery...
If you can, would you mind sending a good thought to Dylan tomorrow morning?
Friday, November 20, 2009
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.
Tuesday, November 17, 2009
"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.".
Thursday, November 12, 2009
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?
Tuesday, November 10, 2009
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".
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.
Sunday, November 8, 2009
- 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.
Wednesday, November 4, 2009
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.
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.
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.