kids Archives - Just Wait and See

Prayers Are Working – I Guess

December 4, 2013 by Ellen Moore Leave a Comment

Looks like the prayers are working – ugh. Catherine had a bigger “tremor” last night and they told Brian today that it looked like a seizure. They told him we would probably start a new medication tomorrow. Just now, she had a 25-minute “tremor” and it was so hard to watch! Usually we hold her so I don’t usually see her little face. I’ve only ever heard about people saying “their eyes rolled back in their head” and tonight I saw it. It was my little girl.

As I watched – significantly aware there were people in a control room watching her and me, I remembered back to a presentation I made at Christ Church in Charlotte. It was the same presentation I made to my home church in Severna Park. In Charlotte someone asked me “What makes you angry?” I replied quickly that I didn’t really feel anger. I went on to take the next question and stopped mid-answer and said out of the blue – “Seizures. Seizures make me angry.” They did again tonight. I hate them and they scare me and I wonder what is happening in her experience of it. Does it hurt? Does she want to be held? Can she hear me? And feel me holding her hand? Is anything I do making any of it any better?

Maybe someone here can answer those questions for me. For now, she sleeps like she hasn’t a worry in the world.

That’s right, Catherine. Give Mommy all those worries and you sleep in peace, little bug. I love you.

Prayers Are Working – I Guess

December 4, 2013 by Ellen Moore Leave a Comment

Maybe someone here can answer those questions for me. For now, she sleeps like she hasn’t a worry in the world.

That’s right, Catherine. Give Mommy all those worries and you sleep in peace, little bug. I love you.

A Sliver of Hope

July 28, 2013 by Ellen Moore Leave a Comment

WOW! I still can’t believe we raised over $5,000 for Bello Machre. Thanks to all of you who donated and supported us for the walk.

Catherine and Sarah after the walk.

Catherine will use the money to help with surgery expenses that are upcoming. She’s getting ready to have a pretty major surgery and I’ve had a hard time dealing with it, frankly. For a long time, I didn’t even talk about it. Then, I talked too much about it and was too cavalier. Now, I am trying to deal with the logistics on top of the extraordinary stress of thinking about just what a big deal this surgery actually is.

Don’t get me wrong. She’ll be in great hands with Dr. Freeman Miller at AI DuPont Hospital for Children. He’s among the best, if not the best, in the world. In fact, we asked a knowing doc at Hopkins if we should consider someone there for another opinion or as an alternate provider and he shook his head immediately and said, “No. Go there. You’ll be in great hands – he’s the best.” I’ll let that doc remain anonymous because if you know anything about Hopkins, you know they never refer out of their system. Even US News and World Report cites the accolades of the orthopedic group at AI duPont and ranks them #5 in the country. That’s all comforting.

But this is a big surgery. Catherine’s spine is curved 78 degrees so Dr. Miller will straighten it and will use a rod to hold it straight.

See the marker at the 78 degree turn.

It really hit me when our therapist said, “Well, let’s do a lot of ball work because she won’t be able to do much after surgery.”

“You mean while she heals?” I asked.

“Well, no. She’ll not be able to bend over the ball after the surgery. Her spine will be stiff.”

Ugh! So, my snuggly little girl won’t be so snuggly anymore. The one who has cuddled up to my skin and Brian’s chest since she was 3 days old will sit erect. I’m sure we’ll find a way – some odd way – to hold her so we can snuggle together. It just won’t be the same. Actually, after every big event for Catherine – it’s never the same.

Her spine is not just curved side-to-side. It’s also curved front to back. In fact, we found out just how severe it was when we thought we felt poop blocked in her intestines. Unfortunately, she got the wrong end of all the treatments to try to fix that before we had an x-ray in the ER and they finally said, “What you feel through her belly is her spine.” Yowzie. I literally didn’t believe it. When we went to see Dr. Miller, he immediately confirmed it.

You can see how much her spine is curving forward making her whole pelvis tip severely.

Hopefully though, we’ll get the results a friend’s son got. Hopefully Catherine will breathe better and get less seizures and not be in the pain she seems to be in now. And hopefully her organs will spread out and grow correctly and enable her to thrive. I even think that if a rod is holding her spine straight then maybe she’ll be able to hold her head upright, too. I figure it’s possible and a girl’s gotta dream – especially in the face of this particular surgery. So, despite the laundry list of things this surgery will bring – all in some weird rule of “fives” – through some grace of God I find a tiny ray of hope. I’ll confess though. It’s really tiny.

She’ll be on the table for 5 hours. She’s expected to need 5 pints of blood. We’ve been told to plan on 5 days in the ICU (what surgery requires FIVE days in the ICU anymore?) and then another 5 days in the regular hospital. Our surgeon told us it’s the equivalent of an adult going through open heart quadruple bypass surgery. Yeah, it’s sort of a big deal. I’ll be hanging onto that sliver of hope picturing my little girl sitting straight and maybe even holding up her head.

And like everything in Catherine’s world since the day she was born, oh so small. We’ll sit in the waiting room in a few weeks, and we’ll just have to wait and see.

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Dream Catchers – Catching some dreams for us

June 2, 2013 by Ellen Moore Leave a Comment

Catherine joined a softball team!

What? How is that possible? Well, take a look at some of these photos and see how cool it is. The best part is the whole family gets to play together – well, when I’m not behind the lens 🙂

Also, remember that we’ve got only one week left to raise money for Bello Machre in our walk on June 8. If you want to give (half the money you give goes DIRECTLY TO CATHERINE!) – just click on this link below https://bellomachre.ejoinme.org/26526

Thanks all!

Time to Raise a Little Dough – and maybe get back to Disney?

May 19, 2013 by Ellen Moore Leave a Comment

Hi all,

I don’t normally do this on my blog. This is a really great fundraising deal though, so I’m working hard to make it happen. Catherine gets help from Bello Machre and we’re walking on June 8 to raise money for them and for Catherine. The cool part is that Catherine gets HALF of the money we raise directly to her. AND if we raise $5000, our family gets to go to DISNEY! It would mean a lot if any of you reading could consider a donation and consider spreading the word to help raise some funds for this great organization and for Catherine directly. We use them for care and services and they enable us great peace of mind!

I’m in the process of editing some photos of our recent family vacation, celebrating 20 years of marriage! And I also plan to post soon about the softball team Catherine has joined – Dream Catchers. All coming soon, so stay tuned…

Thanks so much for any donation you can make. Take a look at this site:

https://bellomachre.ejoinme.org/26526

Hugs to all!

Ellen

A Birthday for a Blind Girl Who Barely Moves

March 9, 2013 by Ellen Moore 9 Comments

Sarah has her birthday parties planned until she is 7 years old. This year, she planned bowling, next year when she’s six, she wants her party at school. And when she turns 7, she’s planned a craft party at Michael’s in their special birthday room. Easy. What do I do for Catherine, though, who is blind and can barely move?

Planning parties for Catherine is tough. I want them to be relevant to her and fun for her, and that’s hard to know. I always have to manage Brian’s question of “Why are we doing this again?” And I’m left to wonder, “Who do we invite?” Mostly, though, I struggle with figuring out how to make it relevant and enjoyable for her. I succeeded in that when she turned 3 and we had a pool party and rented the therapy pool at Severna Park Community Center. They did an amazing job and even cleaned the pool deck and all the toys because they knew getting sick was harder to deal with for kids like Catherine. We also had a sensory event that I created. Normal kids and disabled kids played together and it was magic. I wanted that to happen again. And I wanted Catherine to have fun.

I read an article in some girly magazine that said a mark of maturity was knowing how to throw a party where you didn’t do all the work. True confession: Part of the reason the party for Catherine was so hard was I just didn’t have the energy to pull it all together. This article talked about how to pick a theme and ask guests to participate. That’s when it hit me! What if I could invite people to bring some sort of musical instrument or something that made noise from their basement or Goodwill – nothing fancy – and I’d find a “crazy, creative music teacher” to orchestrate whatever came into the house. I even thought about prizes for the instrument from furthest away in the world, and the most beautiful sounding non-instrument and the smallest sound-maker. I could see it all; I just had to find the teacher.

Immediately, I sent emails to some friends. No one knew the right person and I almost gave up hope. Then, I was sitting in the lobby of ballet class and asked some of the moms there. I didn’t find the “crazy teacher.” Instead, someone suggested drumming. Hmmm – that could be interesting.

Long story short, I found Nellie Hill – a certified drumming facilitator who had worked with kids with special needs and loved the idea of having everyone bring something – she called it a “Found Sound.” She immediately embraced my idea, told me she’d bring the drums and we picked a date. Wow! It was amazing.

I’ll let the pictures tell the story from here. I wound up going overboard on decorations and food and the theme. The energy just came. Our whole house filled with energy and Catherine opened both eyes, relaxed enough to let us move her arms up over her head (she normally doesn’t do that!), and even the “normal kids” – siblings of some of the invited guest, had a blast. We had 5 kids with disabilities and their parents. It was a treasure to figure out how to fit four wheelchairs in the house and help these families feel a sense of togetherness that is often void. I hope everyone had fun. I did. And I genuinely believe Catherine did as well.

Music Bottles

Party Favors

Brailled bags to hold party favors

Drum sticks! Get it?

Look at all the drums!

Catherine playing chimes.

Nellie Hill and me. God bless Nellie Hill.

Opened with a story – Be Quiet Mike!

Figuring out how to play drums.

Family fun.

Gettin’ down with Nellie!

Sheer happiness!

Instruments and sound makers from all over the world.

A perfect cake for a 9 year old.

Really? Every year you make me do this!

Happy Birthday Catherine! I love you.

Suddenly It Hits Me

February 4, 2013 by Ellen Moore Leave a Comment

It’s not quite a normal morning. As I reach for the cereal, I see it. I get the flash of Brian, dressed in blue scrubs hanging back in a room where doctors are trying to help our baby girl into the world safely. I’ve had this flash every year, for nine years now. It’s supposed to be a happy day. I promise myself to try to make it so.

We hang balloons all over Catherine’s door so she can hear that it’s a special day when she comes out of her room. Sarah and Catherine’s nurse and I sing “Happy Birthday,” and we take pictures to mark memories. I feel a pit in my stomach, though I smile through it. We line Catherine up beside the clock and count down until exactly 8:25 AM, the moment they pulled 1 lb, 9 oz of baby girl out of my body. Nobody would say she was healthy. How could they? I don’t ever remember that part. I do remember asking what time she was born over and over again – or was that when Sarah was born? I definitely remember Brian – standing in the wings as they rolled me into an OR that had been readied for an emergency C-section to save not just Catherine’s life, also mine.

I remember being in recovery. I remember a door opening and Brian being on the other side of it. He had the list of people I had asked him to call to deliver the news. Catherine had arrived. Those calls must have been impossible. Rather than joy and excitement, I’m sure they were filled with questions and concern. There is no way Brian could have answered the only real question everyone must have wanted to know – would she be OK? He gave the stats and they were so tiny I can only imagine how shocking the news must have been to family and friends. And then a friend came.

I remember her on the other side of a door that opened and closed, too. I remember being so grateful she came. That’s all I remember about that visit.

The next memory feels like it must have been hours and hours later. I eventually got rolled in to the NICU to see Catherine. I can barely remember her through the porthole of the isolette. What I really remember is crashing into the doors of the NICU and someone apologizing about it. I think I remember her. It must be a memory because we only have 2 pictures of her actual birthday and what I see it my mind is not one of those pictures. I have hundreds of Sarah. And we only have 2 of Catherine. I am thankful for those two.

As I desperately try to remember, at the same time, I want to forget. Writing this brings tears flowing down my face with the intensity of a river being released from a dam. I can’t keep them silent enough, and Sarah comes running to the computer to ask, “What’s wrong, Mommy? Why are you sad?” I tell her they are happy tears. And she reaches up to wipe one away with the back of her little hand. It’s like a movie scene. Just like the scene in my head of Brian.

Happy Birthday, Catherine. However you came into the world. I am so glad you are here!

Pack it?

August 4, 2011 by Ellen Moore Leave a Comment

I still remember an art project in 7th grade. I don’t have the art project; it has to live in my memory. It was my very favorite piece of all my school projects and my teacher blew it up in the kiln. Gone. Overnight, all my hard work and pride blew apart into little pieces that now hang in my memory as what the piece actually was. It was an abstract sculpture of my initials, but the fact that it’s gone makes it live in grandeur in my head. It probably wasn’t really that great.

Today, it’s exactly one year since Catherine’s surgery and I find myself thinking about that art project. The surgery anniversary really has nothing to do with the art project, but I realized the date and sometimes things like that make Catherine’s world more real to me. So much is happening in our lives right now, that it’s nearly impossible to think back to that day of surgery. But I do. And in nearly the same moment, I think ahead to a move we’re getting ready to make. We’re finally moving from the 850 square foot house that’s enclosed our little family for ten years into a big, spacious 3000 square foot open floorplan that will immediately enable us to exhale. But first, we have to pack.

I glanced around the kitchen this morning and caught a bottle filled with colored sand on the stove. You remember the type. The bands of color fill the bottle – red, yellow, white, blue, purple, green, orange – over and over. A label on the bottle says, “Catherine, Summer, 2011.” And I thought for a second, “Well, I can trash that so we don’t have to move it.” And in nearly the same thought, I recalled my 7th grade project.

What if this is Catherine’s sculpture? What if she had the best time making it and she remembers the feeling of the gritty sand? Maybe they put fragrance in the color and she thinks about that. Maybe this is something meaningful to her. I paused for a moment because I don’t know. And I don’t know if or when I’ll ever know whether anything is meaningful to her or not.

So, do I pack it? Or throw it in the trash?

Special Needs of the "Normal" Sibling

November 30, 2010 by Ellen Moore Leave a Comment

It happened again. Another seizure that required meds. But this one had a twist: Sarah wanted to be put to bed in the middle of it by Brian – and Brian was holding Catherine.

“Daddy put you to bed,” she whimpered at the door. That’s how she tells us who she wants to put her in bed. She confuses her pronouns, and it’s kind of cute – unless Daddy’s not available – and then it’s a relentless whine.

Ironically, I’d just had a conversation with a potential client and we discovered that each of us was walking this “parent of a kid with disabilities path.” He is way ahead of me on it as his son just turned 21. But he had told me the story of their daughter who is three years younger and had a hard time with her brother’s disability when she was about nine years old. Initially, she hadn’t. But as she matured, she became angry. She finally turned the corner when she got to go to a psychologist and realized, “You mean this is my very own doctor?” Seemed she had some “special needs” too.

That conversation played in my head as I knelt down to Sarah’s level. “Hey Sarah? You know how sometimes when you’re sick, you want Daddy to hold you?”

“Yes,” she nearly whispered.

“Well, Cackie’s sick, and she wants Daddy to hold her. And I want to hold you and put you to bed and tuck you in really special. Can I do that?”

“OK,” she accepted, and willingly let me put her down for the night. I said a quick “thank you” in my mind to my new friend for helping me remember that Sarah has special needs, too. Privately, if I really confess my deepest thoughts, I think I hoped this one conversation would spare us any anger when Sarah is about nine. Crazy, huh?

But then Sarah got up and came to the door again. “Daddy put you to bed!” she whined a little louder.

After asking me to videotape Catherine since we’ve not taped the seizures that require meds in a long time, Brian got up from his chair and began carrying Catherine to her room. “What are you doing?” I asked in confusion.

“I’m going to put Sarah to bed,” he said.

And I stood with the video camera, watching Catherine seize, amazed at my husband who calmly figured out how to balance all the special needs of both our girls last night.

Let the Data Show

November 24, 2010 by Ellen Moore Leave a Comment

We’re entering another phase where instead of being a mom, I become a scientist. Instead of snuggling and hugging and cheering, we will observe and track and analyze. I don’t especially like these phases, but long ago I learned that we all do things we don’t like, right?

Catherine has been having “episodes” every night, and they’re getting stronger and more frequent. Something wakes her and moments later, her little body is trembling. Sometimes it’s intense. Sometimes it’s mild. Sometimes it’s a steady tremble. Sometimes it pulses in waves. Picking her up used to stop them; now it just makes us feel better.

We had a sleep study done at KKI in July before her surgery and despite all the wires and equipment on her body, she finally fell asleep, but the data didn’t indicate any seizures. It indicated a mild obstructive sleep apnea, but no one seems too concerned about that.

Could YOU sleep with all this equipment on you?

So, we don’t call these episodes “seizures” – yet. Our nurses call them tremors. One even calls them convulsions. And one “episode” may have actually been a seizure that should have been medicated. Enough.

I finally broke down and made “the chart.” I have a colleague – let’s call him a friend, actually – who is in awe of the way we have to track data about Catherine. He’s responsible for analytics in our company, so for him to be in awe really surprised me. He’s helped me analyze Catherine’s eating data in the past, so we could show the county whether she was learning to eat or not. Data says she is. I actually like data.

When I pulled out the computer on a recent flight to see a client, I asked him how to build the chart in Excel. He starts everything with questions, so I tried to give the answers before he even asked. But one part continued to challenge his thinking.

“Wait, you really need to track 25 things?” he asked.

“Well, it may not be 25,” I said, “but it’s something approaching that. It’s not five – I know that.”

He asked some good questions and helped me at least figure out what to put on the x and y axis. What mom talks about her kid as relates to an x and y axis? He gave me some other tips and then left me to figure it out in greater detail.

My chart fits on two – did you read that right? – TWO – 11×17 pages and actually tracks 38 variables. That’s insane!

But what’s more insane is that we have to do this. I get that the docs need a better look at what’s happening. And I get that we’re waiting for another sleep study. (I’m sure that’s about whether insurance will pay for it). I also get that the data will hopefully show us a pattern. But there is a part of this that annoys me, frankly.

When we were at the sleep study doctor’s office, I suggested we needed to get several doctors in the room together to discuss the situation. Everyone was approaching it from his or her own view and specialty. No one was looking at the little girl and all the things going on in that little girl to think about what might be happening overall. Is it hormonal? Does feeding her wake her up and cause the episode? Are they actually seizures? I think the neurologist and the sleep doc and the endocrinologist and the developmentalist need to get together and actually talk – novel idea, huh? The sleep doc told us they probably couldn’t do that – but they could email each other.

What? You work in the same building!

And so the real reason I have to be the one who builds the chart, trains the nurses, tracks the data and then analyzes it is because I’m the only one who cares enough to do it. Yet, when I walk into the doctor’s office the next time – with my 38-variable chart filled out for weeks, the doctors will be impressed. And maybe, just maybe, they’ll get this thing figured out.