Declan Update

A few weeks ago I blogged about Declan, which you can read here. He was a sad little lump, not feeling well in so many different ways, requiring lots and lots of appointments, and just kind of puzzling the medical community. The most troubling symptom was his collection of swollen lymph nodes - since the beginning of June they have been hanging around, growing, and multiplying. Our family doctor and a pediatrician both agreed they were too big, they didn't feel quite right, and were in too many locations for their comfort. It was time for a biopsy.

Today was a day we were eagerly anticipating yet dreading: pre-biopsy consultation day. We really wanted to know if we were facing lymphoma or if we could cross it off the list of possibilities. But even though we wanted answers, and knew that we were looking at lymphoma as a real possibility, when the call came that Declan had an appointment at CancerCare, I cried. It was very real and very scary all of a sudden.

So early this morning we headed off to CancerCare, which is sort of between Children's Hospital and Health Sciences Centre. I've accompanied my Mom to the adult CancerCare several times and I knew the staff that worked there was awesome. Still, I wasn't prepared for how amazing the Pediatric CancerCare centre would be.

 We had an early morning appointment and were one of the first families there. In fact, the only other kid there was about 13 so Declan had free reign of the amazing play room.  

Check it out.

A tree house inside. Awesome.

Super cool airplane

Their cozy coupes come with a gas pump. So funny.

"What does this do, Mommy?"

He totally didn't see that coming. See how far he jumped back? LOL

So many toys to choose from

Playing airport with Daddy

Before long, other kids started coming in. Some were with nervous parents and seemed to be there for the first time, like us. Some were obviously regulars. Kids and parents were greeted by name and with big hugs. The woman who worked in the play room knew all the kids and siblings - asked how their camping trip was last week, told them she found a new butterfly craft she knew they would love, challenged them to beat her high score on some game on the iPads she handed out. She told us if we needed to have a grown-up conversation with the doctor, Dec could hang out with her. She got kids busy painting and crafting. One little guy gave a doll an injection with a real needle, practice for a procedure he was going to get. We'd been there about an hour when a clown came in and started blowing bubbles for kids to chase. It was awesome.

There was so much love and laughter in that room, but it was really hard to see how many kids were there! Some were really, really sick. The older boy who was there when we got there was with his dad - who was crying. One little girl had only been in Canada 2 months, and her family said if they were still in their home country they wouldn't even know she had cancer. One little guy laid in his mom's lap, getting IV fluids and weakly trying to play Rescue Heroes with his little friend who was being tube-fed on the other side of the toys. One tiny baby was only 9 weeks old.

A 5 year old girl got all hooked up with a blood transfusion and came out sobbing. That was a hard moment for me. But not as hard as it was for her, so I quickly tried to focus on the walls of the room to keep myself from crying - that didn't really help. Different things in the room are named in memory of kids. A beautiful tribute, for sure, and an amazing gift for the kids that spend so much time there. But so, so sad.

Eventually it was our turn and Dec marched right in and hopped up on the exam table. He's an old pro at new doctors wanting to check out his lumps. We gave the doc (Hematology Fellow) the full history that we've repeated 6 or 7 times now, and she gave him a thorough exam. Then it was back to the waiting room while she consulted with the Hematologist. Finally we were brought back in and the news was great: Declan's swollen lymph nodes measured half the size they had been just 10 days ago! They are all smaller and feel fine, like boring old regular swollen lymph nodes. 

PHEW.

So the random, weird illnesses from the last 6 months have all been a virus, or a collection of viruses. The docs said they've tested him for all the big, common ones and haven't come up with anything. Maybe that's because sometimes a virus like Mono can hide in the bloodwork. Maybe that's because there are hundreds of viruses and we'll just never know which one it was. But the bottom line was this: it definitely was not lymphoma. 

We were so, so, so relieved. And I felt so, so, so guilty walking out of that room and through the amazing playroom full of amazing kids and families that did not get good news like we did. They seem like a big family, full of positive, brave, incredible people. But I was really relieved that today we were not joining their club.

Celebration lunch

Huge thank yous to all our friends and family members who have been supporting us through these last few months. Huge, huge respect to all the health care workers who dedicate their lives to kids who have cancer. Huge, huge, huge hugs to all the families who are regular visitors to the amazing playroom. You are all incredible. xoxo
 

To Talia at Five

Dear Talia,

This past week, you turned five years old. I know I say this with every birthday, but I can't believe it. How can I? Two seconds ago we were bringing you home from the hospital. I blinked and here we are, getting you ready for full-time school in the fall. 

It's been 5 years but we still like pink stripes

 This year for your birthday, you had many opinions. It was fun to plan it with you. You wanted a Ballerina Pool Party, and for your cake you wanted a kid riding a bike down a waterfall.  Where did you come up with that idea? Is it possible you were testing me? I have no idea. But I tried my best to give you what you wanted. 

Thankfully you were okay with a last-minute switch due to lack of inventory at the party store - ballerinas out, princesses in. I'm excited (and a little scared) to see what you come up with next year for your cake!

What are you like at five? You are bright and curious. You are stubborn and mischievous. You love being the big sister in the house and are constantly asking Ruby, "Do you want to play with me, your big sister?" or reassuring her with a hug and an "it's okay, your big sister is here."

Over the past year Grammie has been teaching you to read - you can read the old Grade 1 readers and now you say "I don't need to practice reading, Mom. I already know how to read."

You are a fascinating mix of big girl and little girl. 

Strapped safely in a 5pt harness..... with an iPod and purse.

You told me your favourite birthday gift was a tie - between your iPod touch and your new Our Generation doll. 
 

You are fiercely independent and want to do more and more for yourself - but still drop into my lap for the occasional cuddle.

You are maintaining half an inch in height over your little brother. I fear each month that this will be the month where Declan will take off in a growth spurt and you'll finally understand what I mean when I tell you that just because you'll always be the oldest, that doesn't mean you'll always be the biggest. You've been working hard with your physiotherapy over the last 5 years and we've almost closed the gap. You are getting braver on your bike and in the pool. The other day you swam all around in the pool with me, no lifejacket, face in the water! Once you make up your mind to do something, look out world.

I can't believe you're going to full-time school in the fall. I know you're excited and I know you're ready. I'm excited for you to start your journey of learning and fun activities. It blows my mind that by this time next year, you'll be well on your way to being fluent in another language. But still, I wish time would slow down just a bit. Five years is NOT long enough for me to have you home. I'm proud of you and know you'll do great. But I'm a selfish Mama and don't want to share you with the world so much quite yet.

But share you I will. With Maternelle, and gymnastics, and Sparks, and swimming lessons, and piano lessons..... the list goes on and on. I hope you'll always be excited to try new things and have fun with friends. But mostly I hope we'll always have days like this, just you and me.
 

Love,
Mom

Summer 2013

So. It's summer time. Summer! When we throw schedules out the window. When we concentrate on having fun with our babies. When we take great joy in hustling out the door early in the morning to pack as much fun as we can into the day. When we even occasionally shrug our shoulders and say "Meh. They don't need supper, they had a lot of ice cream this afternoon."

But this year is different. Sure, we're still having lots of fun. Sure, we are crossing things off our summer bucket list. But this year we're fitting fun days in around a schedule that looks like this:

Thursday 8am - Declan to Children's Hospital - lump check

Monday 2pm - Declan to Variety Children's Heart Centre - echocardiogram

Wednesday 11am - Declan to Naturopath

Monday 9am - Declan to Dr. Lee - sores on head

Thursday 4pm - Declan to Children's Hospital - lump check

And so on, and so on. With a liberal sprinkling of Emergency Room visits, bloodwork, x-rays, etc. Right now we are anxiously waiting to hear when Declan's biopsy will be.

What? Biopsy? How did this become our life?

This boy - MY boy - is sick. Really sick.

He's had more days like this than we'd like. He has some mysterious lumps that have multiplied and grown. He has random fevers and swelling. He suddenly has an enlarged heart and murmur. He has days where he is a sad little lump who sleeps all day and all night. We don't know what's up. There are many theories floating around right now - maybe a virus. Maybe tuberculosis. Maybe even cancer, although nobody wants to say it. Personally, I'm praying for a virus. Ha. When do you hope your kid has a virus? When the alternative is too scary to comprehend, that's when.

So we keep on going. We have fun when we can and we go to the hospital when we need to. We are tired and we are terrified. And hopefully we will look back on Summer 2013 as the summer that our little buggar Declan gave us the scare of a lifetime due to a strange virus that ended up being no big deal. Fingers crossed, everyone.

All About Talia

Talia just completed a school project called her "All About Me" box. About a month ago we got a letter home that instructed us on how to put together a box full of special things for Talia to share with her class.

We found a box (it was a good excuse for me to buy new runners) and Talia chose the wrapping paper we covered it with. Then she decorated it - cut out the letters for her name, put some stickers on, and a copy of her school picture this year. Then we got busy filling it up.  She's been busy showing it to everyone who came to our door for the last month. (You are welcome, nice man from the Church of Jesus Christ of Latter Day Saints.)  She is so into it, it's easy to be a captive audience for her.

We put in her tiny little baby hat, the ankle band from the hospital, and her baby booties. I also have her umbilical stump in a ziplock in her memory box, but Raine said I would look like a weirdo freak hippie if I sent it. Ha! So true. Daddy told her which book was her favourite when she was a baby, and it went in the box.  She was also supposed to bring her favourite toy, so good old Ted made his way into the box this morning.



Part of the assignment was to include some pictures. So we added her collage of birthday pictures:

as well as a bunch of other pictures of her being silly, her with her siblings, etc. 
 

This morning she practiced what she would tell her class about each picture. This one made me cry:

"This is my Daddy holding me when I was just borned. He has a big smile because he never holded a baby before! I'm the first baby in our family!"

But when she was at school and telling her class about her Daddy in this picture, this is what actually happened:

Mrs. F asked: What does your Daddy do when he goes to work?
Tal (shrug): He buys the bacon and bwings it home.
Mrs. F (trying not to laugh): Does your Mommy bring home the bacon too?
Tal: Nah. Just little bacon. Bacon bits.

Leave it to Tal to put her own special spin on things. :)

I can't believe that tiny little first baby is already old enough for a school project. Good job, my girl. I hope you're just as excited about every project you do over the next 12 + years!! 

Wooby Twos-day

Dear Ruby,

Two years ago you gave us a scare of a lifetime when you decided that a placental abruption was the best way to enter the world. After arriving with a bang you slipped into our family and made it your business to teach us a thing or two about taking care of 3 kids.

For instance: the triple bath

 You have always been different from your laid-back, easy-going siblings. You have a much more spirited personality and you are never going to get lost in the shuffle of the 3 Raine Circus - your get-up-and-go is exactly what we need around here. Most of the time. But feel free to give me the occasional break, hey?

You have been through a lot in your two short years. You had so many allergies - dairy, soy, gluten, egg, corn, rice, peanuts, pistachios, and all fruit except berries, apples and pears. It's no wonder you've been so cranky at times, and kind of a miracle that you are so full of joy and light most of the time now.  You love to be the centre of attention - you can be in the middle of a full-on tantrum but if you realize someone is looking at you, you'll burst out laughing and screech "peek-a-boo!"

I love that you are happiest when you are playing with your brother and sister. You guys really are the best of friends - even though you freak out if your brother tries to claim one of your toots as his own. I wonder at what age we can expect that to flip to everyone blaming Declan for their farts?

 
What do I want to remember most about 2 year old Ruby? You love Dora ("Swiper no swiping! Awwww, man!") and princesses, especially "Arella." You are already too cool for Mommy to call you Baby Ruby, and correct me with an indignant "I NOT Baby Wooby; I good girl Wooby Waine!" You love babies and always have a doll in your hands.

Unlike your brother and sister, you are constantly moving. You run, you jump, you climb. The physiotherapist who was assigned to you when you were too stubborn to roll as a baby has since closed your file and picked up your siblings instead.  It's so funny, compared to your siblings, sometimes Daddy and I feel like first time parents getting used to an active toddler for the first time.

Your bedtime friends are your two elephants, Elly and Another Elly, your ladybug (which is actually a unicorn but whatevs) and as many books as you have managed to stash away in there during the day.

I'm not sure what gives me the biggest scare - finding your empty bed or realizing that you are once again sleeping in the top bunk with your big sister.

You do what you want to do, when you want to do it. Case in point? Today I tried to get the traditional "Raine kid with their bear on their birthday picture." You weren't having any of it:

"I too busy playin' LeapPad."

"No! I no look at Mommy!"

"NOOOOOO! No cheese! No smilin'!"

Smooches for bear.

What's that, bear? No, I don't think she realizes she's not getting a good picture today.

"Hi Deckie! I smilin' for Mommy!" (Mommy's note: she's a liar)

Screw this, I'm outta here

You march to the beat of your own drummer and although it is trying at times, I love it and know it will get you far in life. Whatever you put your mind to, you are going to achieve. I am so thankful you put your mind to potty training because I did not think we would ever get you on board with "le pot."


You love to dress up. One morning last month you woke up before anybody else, went into your brother's room, took the full knight costume (helmet, shield, chest plate, cape, and sword) out of the tickle trunk, put it all on, and woke me up by poking me in the face with your sword. It was pretty much the funniest thing ever, even at 6am.



Whenever we can't find you, you are always in Declan's room at the books, half buried under a big pile.  Somehow you know your colours and can count to 10 - good thing you're good at picking things up, you poor, neglected third child!!  At the end of Twinkle Twinkle every night, you point to the picture of the blonde, curly-headed baby with her mom and tell Daddy "Dat like me, and dat like Mommy."

Your favourite food is oatmeal with blueberries, applesauce, flax seeds and hemp seeds. You are a wee bit high maintenance when it comes to food but I don't mind. How many 18 month olds would routinely ask for quinoa? 

You love bare bums, and whenever you see one (which is pretty often in a house with 3 preschoolers) you squeal "Moon! Moon! I see the moon!!!!" and run to pinch the cheeks of whichever sibling is being a nudist at the moment.

You're one of a kind, Woobs. Thanks for making every day an adventure. Can't wait to see what you get into tomorrow.

Love,
Mommy

- 5

I love winter, but I have to admit: our multiple long stretches of forty below have been hard on us this year. I'm ready for spring. So the weather this past week has been welcomed with open arms. It has been so good to walk to Grammie's house and play outside for hours!

Next fall, on that first morning when we wake up to frost on our car windows and a frantic search for last year's mittens, I hope I remember how good - 5 actually feels. It's all about perspective.

 

Big News For Ruby

Honey Roo Boo

This week brought some interesting news about Ruby!

Let's begin from, well, the beginning. When I was nursing Ruby, it didn't take long for us to figure out that she was sensitive to dairy. Like crazy sensitive. So I cut out all dairy from my diet, and guess what? She was just as sensitive to soy. You know what soy is in? Everything. That's what. So I followed a dairy-free/soy-free diet from the time Woobs was about 2 weeks old until she was almost a year old. It was really healthy and kept me away from all processed foods. I got really skinny and missed cheeseburgers. Meh. It didn't kill me.

When Ruby started solids it became apparent that she actually was sensitive to much more than dairy and soy. Most foods resulted in episodes of screaming and projectile vomiting all night long.  She was diagnosed with FPIES - which basically means she had a problem with the protein in a lot of different foods, like dairy, soy, chicken, beef, legumes, rice, sweet potatoes, gluten, etc. The list went on and on. We were told there were some foods that were more common FPIES triggers than others, but that every kid is different and it was basically a trial-and-error process to figure out what she could and couldn't handle, and that she would eventually grow out of it. You know what I really loved? Giving my baby a new food and then counting the minutes until exactly 3.5 hours later, when the barf & scream hours might or might not start.

When she was about a year old, she got much better. She passed food trials with flying colours. She started eating anything and everything - by the time I went back to work I was even able to send her to daycare without any special food. It was awesome.

But then my baby stopped getting better. She started getting sicker and crabbier. She had huge dark circles under her eyes and was just never well. She screamed and cried all day and all night. Something wasn't right. The regular medical system had already basically said goodbye and good luck when it came to figuring out what was wrong with Ruby. She was pretty miserable most of the time and we didn't really know why.

Then one day last spring I went to my staff retreat at work and one of the sessions I took was a presentation from a Naturopath. I loved everything she said about the body's ability to heal itself and the crucial role that diet plays. I absolutely believe that today's garbage diets play a huge role in health problems, behaviour problems, etc. And I really liked that I got to experience the ND's presentation with my coworkers - I work in community health and I loved hearing the questions and discussion between my medical coworkers and the ND. I came home and talked to Rainer about it, and we decided to take Ruby to the ND who had presented at my staff retreat.

Ruby was seen at The Nature Doctors last spring and was immediately put on a very restrictive diet: no dairy, soy, gluten, eggs, corn, rice, no fruit (except berries, apples and pears), peanuts, pistachios, or processed sugar. Haha. And I had thought my dairy-free/soy-free diet was restrictive! Rainer thought it was nuts but was okay with us trying it for a while. So we jumped in. I learned a lot about cross-contamination and worshipped at the feet of The Gluten-Free Goddess. We bought unsweetened almond milk by the case and got to be on a first-name basis with the staff at Vita Health. I learned how to make yogurt from coconut milk and spent a lot of time baking. And Ruby? Ruby thrived. She started the restrictive diet and it was like someone had turned a switch. She shot up in inches and pounds, went back to being a great sleeper, and her mood improved drastically. It was incredible. Rainer, who had previously been skeptical, became a believer after the first week when he was playing with Ruby one day and she giggled - and he realized Ruby was over a year old and he'd never heard her laugh before. Who feels like giggling when their belly is always so sore?

We stayed on the restricted diet for a long time. Because Ruby was so young, we couldn't get her tested for food allergies/sensitivities through the ND, so the foods eliminated were an educated guess - a combination of things we knew she'd reacted to in the past and foods that the ND knew were common triggers. Ruby was 1,000,000% better on this diet, but we still had some reactions here and there. We weren't sure if that was from cross-contamination from the rest of us, slip-ups with her diet, or that she was reacting to something else that we hadn't eliminated.

Along with the restricted diet, she was given a couple of undas, which are like prescriptions from an ND. The theory behind this all was that Ruby has a "leaky gut" and by eliminating the trigger foods, and treating it with the unda, her gut would have time to heal itself and the allergies would resolve. The first unda didn't seem to do anything. In fact, around Christmastime things were getting worse. Ruby was still on her diet but was having more and more bad nights. We had one stretch that was every night for over a week! Around this same time, my friend Amanda's family had an amazing experience with a chiropractor in Florida. While I initially thought she was crazy when she brought up the idea (it's okay, she knows I thought she was nutso) it really did make me wake up and realize we should do more for Ruby. I mean, I was working hard to make sure she never felt left out when it came to food. We always had the same supper (although sometimes Ruby had a special version) and I even made Ruby-friendly Christmas baking so she could enjoy some treats like everyone else. But she was still reacting to things from time to time. We were managing but we weren't getting better. And we went out a few times to other places where Ruby got into different things - drank cow's milk from another kid's cup, found a stash of pasta in some kid's chair after supper - it was only the beginning of what was yet to come - trying to keep her away from her triggers when she's in an environment outside our house. So that lit a fire under me.

We talked endlessly about booking it to Florida for our own miracle, but decided to try some more local options first. We looked into acupuncture - a friend of mine was once known for having the second worst allergies in the entire province, and through acupuncture they have all been eliminated except for her nut allergy. We tried another round of the unda and started taking Ruby to our own chiropractor here in Winnipeg. When I started telling him about Ruby, he told me that 90% of the kids he sees are there for allergy elimination. (WHAT THE HELL, DR. GERRY????? Why he doesn't have a flashing neon sign proclaiming this fact, I will never know.) As he talked about what is going on in the body of a child with food sensitivities or allergies, and what it does to them, and the impact it has on their mood and behaviour, I wanted to cry. It was like he'd been peeking in our windows. We started treatments the next day and went from the worst 2 weeks we'd had in a year to only having had 1 bad night since seeing Dr. Gerry. Pretty amazing.

But the most exciting thing in all of this was news from the Naturopath said Ruby was finally old enough for the allergy testing! We were super excited about learning what exactly she needed to avoid, hopeful that we would be able to ease up on the restrictions in her diet. We went in for her blood draw and waited eagerly for the results. Of course, with our luck being what it is, there were a few screw-ups at the lab and we ended up needing to go in and start the process again. We talked every night about which allergy we would most like to see disappear: I finally settled on corn and rice while Rainer's vote varied between dairy and all of them. Ha.

And here's where the big news comes in: we got her results back this week, and they show nothing. Nothing. As in she has no remaining allergies or sensitivities. It's a miracle, right?

I'm not sure. 

On the one hand, this is exactly what we've been working toward. The whole idea of the elimination diet and the unda was to heal the leaky gut. The whole point of the chiropractor treatments are to eliminate the allergies. Why did we do these things if we didn't believe this is where we'd end up? And kids grow out of allergies all the time. Who's to say Ruby isn't one of those kids?

Still, it seems too good to be true. Mostly because the test results came with a big disclaimer saying if you've been practicing complete avoidance (which we have been for almost a year) your sensitivity/allergy is unlikely to show up. I'm not going to lie. I was actually livid when I read that, thinking that was a waste of time, money, and most importantly, hope. I immediately called the ND's office and the office manager was totally ready for me with an explanation. (LOL. I'm guessing a) I'm not the first person to freak out after reading the disclaimer and b) the ND's office regularly curses that lab for including that disclaimer on the results.) The ND says it doesn't actually impact the results very often, and we should start re-introducing foods. 

I still can't believe it, but am cautiously optimistic. Ruby had half a pita for supper last night and was actually the ONLY one of the kids who slept through the night. So maybe, just maybe, this is for real. Fingers crossed, everyone!

 

 

Cousins

Growing up in GP was kind of like growing up in the middle of nowhere. My Dad only had one sister and she lived 4 hours away. She only had one son and he is several years younger than me. My Mom came from a really big family but we didn't have tons of cousins there either, and they lived in the Maritimes so we rarely saw them.

So I'm really glad we're only 10 minutes away from one set of cousins! It would be nice if the other ones were that close, too, but we'll take what we can get. :)  The kids are all so close in age - Talia and my nephew are 6 weeks apart, Ruby and my niece are 3 months apart - so it's a little bit of chaotic bliss when we all get together.

Talia thinks her cousins have the best toys. Spiderman glove!!

Badminton game! Declan loves having a boy to play with.

Ruby-friendly cupcake we take to all the birthday parties.

<3 br="">

Grammie gets a makeover

Best buddies, Spidey-style

Hard to believe we didn't have any of these kids just 5 years ago. What the hell did we do at family gatherings before them???