The Year Ahead

the-year-ahead

At the end of this last year in November we were fortunate enough to have an appointment with a biochemical disease doctor, Dr Galina Nesterova, who just so happens to have a lot of experience treating people with cystinosis. It was so amazing to finally be able to talk with an expert in the field and feel like my concerns were being properly addressed. Don’t get me wrong, I think that our nephrologist and all the support people we see at the renal clinic are great but sometimes I’ll bring up an issue which is fairly common among the cystinosis population and I’m met with resistance. I feel like my concerns get dismissed because they might think I don’t know what I’m talking about.

Here’s the thing though, I have far more time available to research cystinosis and the sorts of things I should be looking out for than they do. And I understand there’s a thin line between being cautious and overly paranoid when it comes to rare diseases but when I bring up a concern, I want to feel like I’m actually being listened to. For example I’ve been concerned about Elsie’s legs going a bit knock kneed and have been told several times from the renal clinic that it’s fairly common in children and they usually grow out of it by age 5, so until that age they don’t think action is necessary. However after bringing this up with Dr Nesterova she explained that for children with cystinosis the problem may not correct itself and could get worse as they age and gain weight. Then she referred Elsie for some physiotherapy and wants them to assess whether orthotics are needed to help keep her ankles from turning in. Finally, progress!

For the past few years Dr Nesterova has been assisting Dr William Gahl at the National Institutes of Health (NIH) in Maryland, USA in his Natural History Study of the Use of Cysteamine in the Treatment of Cystinosis and I’ve been wanting to take Elsie there since I first heard of it. Many people throughout America visit the NIH every couple years to take part in this study, which includes extensive testing and review from one of the top doctors in the field of cystinosis. But, living in Canada, I didn’t think it would be something we could participate in. However when I mentioned it to Dr Nesterova she said it would be no problem for us to participate and that we would just have to cover our travel costs! I was given the contact for the study coordinator and I’m hoping to bring Elsie there sometime in the Spring or Summer this year.

With the prospect of having experts in the field to ask questions from and get a real sense of just how healthy Elsie might be I’ve found myself looking to the year ahead with a lot of hope. Every year since Elsie’s diagnosis I’ve felt like we’ve gained more and more control of cystinosis. Instead of it running our lives it now feels like just a part of a our lives, and a manageable one at that. Sometimes I worry that this is just the eye of the storm and in a few years we’ll be thrown back into the chaos with something like her kidneys starting to fail, or maybe her thyroid will start having problems but for now I’m choosing to put all that fear aside and just live in this peaceful moment of health.

Her first check up at the renal clinic this year went fairly well but we have had to add some new medications to the mix. Her red blood cell count has started to drop so they’ve added a multivitamin called Renavite to try bring the count back up. They’ve also added an iron supplement called Euro-Fer and a half tab of Tums to add some calcium that she’s probably missing from her diet. At 15.53 kg she is sticking to her growth curve at the 26th percentile for weight and at 103 cm tall she’s in the 44th percentile for height which I think is awesome! All in all I feel like we’re in a good space at the start of 2017.

With the new additions to her medications I thought it’d be nice to post her medication schedule again:

1:30am – Cystagon 300mg

7:30am – Cystagon 300mg 

With Breakfast

  • Sodium Phosphate – 1.5ml
  • Potassium Citrate – 7.5ml
  • Spironolactone – 2ml
  • Carnitor – 2.5ml
  • Vitamin D Drop – 1

With Lunch

  • Potassium Citrate – 7.5 ml
  • Carintor – 2.5ml
  • Tums – ½ a tablet

1:30pm – Cystagon 300mg

5pm

  • Potassium Citrate – 7.5ml
  • Renavite – ½ a tablet
  • Euro-Fer – 2ml

With Dinner

  • Sodium Phosphate – 1.5ml
  • Potassium Citrate – 7.5ml
  • Spironolactone – 2ml
  • Carnitor – 2.5ml
  • Enalapril – 2ml
  • Vitamin D Drop – 1

7:30pm – Cystagon 300mg

At Bedtime – Growth Horomone

Eye drops – 6x/day: every two hours

Elsie has started to express an interest in learning how to swallow pills so hopefully soon we will finally get our act together and start teaching her how. It would if she could swallow pills when she starts Kindergarten in September. That way we won’t need to worry about medications needing to be refrigerated and things like that. When we do start the process I found this article from The Pursuit of Research with tips on how to teach your child to swallow pills which I think will be invaluable. And while I can’t believe my little girl will be starting school so soon, that I think is another post entirely!

All in all I’m looking forward to the rest of 2017. We hope to attend one of the cystinosis conferences this year as a family as I would love to meet and talk with some of the wonderful families we’ve met online and I think Elsie would love meeting and making friends with their beautiful children. So here’s hoping that 2017 meets up with my expectations.

Take Care of Yourself as Well!

take-care-of-yourself

I’ve been thinking about writing a post like this for a long time now, but have never felt like I’ve truly embraced it. Right when Elsie was diagnosed I knew that I would have to keep myself healthy and happy if I wanted to really take care of her properly. You hear all the time about how important self care is and yet…

When your child is faced with something as life altering as a major medical diagnosis it’s easier not to think about yourself. There’s so much information to learn and a whole new lifestyle to adjust to, the last thing you want to do is worry about whether or not you’re getting any “me” time.

There’s also the guilt. You might feel guilty for thinking about how hard this is on you, when your child is the one who’s really suffering. Or you feel guilty for grieving the life you thought you had. The one where your child was healthy and you hoped your only medical concerns might be a broken bone or two somewhere down the line. Probably you feel guilty for both, and a lot more too.

And there’s a tremendous pressure to hide your negative feelings from the world. Most people will never really understand what you’re going through and hearing the truth of your pain and grief makes them uncomfortable. Wallowing in your pain somehow feels like you’re failing or that you might not make it through. It can leave you feeling incredibly scared and lonely.

I fell into depression. I didn’t want to think about all the heavy feelings I had and so I ignored them, choosing to focus solely on Elsie. I quickly gained weight and my relationships with my loved ones suffered. It wasn’t until my depression turned into anger towards Elsie that I realized I needed help. I wrote a post for the Good Mother Project, Most Days I Didn’t Even Like Her,” detailing my postpartum depression.

Finally I realized that I needed help and began seeing a counselor and it was the best thing I could’ve done. With her help I began to see how unfair I was being to myself. I wanted to be a perfect mother who had it all together and was dealing with Elsie’s diagnosis like a champ, but the truth is I was hiding from my feelings. We had been through a lot and I never really took the time to acknowledge those dark, painful feelings I had. Suddenly all the things that I thought made me a monster didn’t seem so bad. I found that I am simply just one mother, trying her best in the face of difficult circumstances.

And I saw that I needed a break. Or rather lots of mini breaks, time to myself to get back to who I was. I started going to yoga class, leaving the kids with Dave or the grandparents more often, and journaling. Separately they were just little things but slowly I started coming back to myself. This realization hit me one day on my way home from work. A song came on the radio and I started tapping the steering wheel and humming along. I couldn’t remember the last time I got into a song like that. I used to be a huge lover of music but after Elsie’s diagnosis nothing moved me, it was just background noise, but on that day I felt like I had long ago and I thought, “maybe I’ll be okay after all.”

That experience felt so good it left me eagerly wanting more. It’s a small start but now I know that I can get back there. Only I’ve realized that I can’t go back to the person I used to be but I can be something even better, the person I want to be.

Since then I’ve started to take my health seriously. I’ve been dieting for the last few months and have lost 35 pounds (thank you Vital Body)! Losing the extra weight I gained during my depression has felt as though I’m actually shedding the depression itself. The confidence and self love it’s given back to me is tremendous. I feel more like myself and like the strong, confident, happy mother that I want to be and making my health a priority is also setting a great example for my children.

Besides my physical health I’m also taking small steps to making my mental health a priority. Writing and blogging is one of the ways I get my thoughts and feelings out and I’ve also recently started gratitude journaling in The Five Minute Journal. So far I’m loving it! It’s nice to start my day thinking of things that I’m grateful for and little things I can do to make today great. It’s only been a week and half and already I’m finding so much joy in everyday life. For example, today I’m grateful for overhearing Dave and Linden playing and laughing together while brushing their teeth, spending the afternoon at an adorable tea shop with one of my oldest friends, and Elsie clutching on to Dave’s arm while she watches him play video games. There is so much love and happiness to be found in our everyday and I’m extremely thankful that my eyes are now open to them.

I still think that I am by no means an expert of taking care of myself, or making sure my cup is full before filling those around me, but I’m working on it. And the little steps I’ve taken have shown me just how very important self care really is. You can’t ignore yourself, your feelings and your desires forever. Eventually it will catch up to you and must be dealt with. Instead of fearing your pain and putting yourself on the back burner I say embrace it and work through it. Chances are you’ll end up having to do this anyway so why not do it now. You deserve to happy. You deserve to take care of yourself as well.

* Photo taken by The MAMAS Project. I recently shared my motherhood journey with them and talk a bit more about the toll Elsie’s diagnosis took on me. Click on the link to check it out!

When It’s More Than Just Picky Eating

When it's more than just picky eating

I recently wrote an essay for Tribe Magazine titled,”The Heartbreak of a Picky Eater.” In it I talk about how difficult it is to have a child that refuses to eat no matter how hard you try, and feeling judged by others for their skinny appearance. But what I didn’t talk about is when it’s more than just picky eating.

Many children with cystinosis have a very small appetite, with most of them getting the bulk of their nutrition through their feeding tubes, usually with something like pediasure or a blended diet. For them it’s more than just an aversion to trying new things it’s actually a medical condition that’s keeping their appetites down.

You know the saying, “they won’t starve themselves,” unfortunately for some that simply isn’t true. Some children with medical conditions will in fact starve themselves because they don’t feel hungry. We worked with an Occupational Therapist (OT) from SHARE Family and Community Services for about a year and a half trying different things to pique her interest in foods. Whether or not I think these sessions helped is up for debate.

Mostly I was looking for a quick fix. Someone to come in, wave their magic appetite stimulating wand and within a matter of weeks I’d have a totally different kid. As you can probably guess, that didn’t happen. The suggestions and techniques that we worked on were all meant to slowly build Elsie’s relationship with food and when you have doctors and dietitians telling you she needs to eat more now, the slow road is also full of frustration, anger and failure. More often than not Dave and I would quickly loose hope after trying something new and revert back to the old way. We’ve since stopped working with an OT because after a year and a half there was nothing else new for us to try.

I did however attend a workshop that SHARE held on how to help picky and problem feeders which had some good tips and I wanted to share the points that I took away from it.

1. Create a routine: They recommended having set times where your children sit down at the table for every meal, including snacks. And eliminating distractions like tv or games. For us this didn’t work, Elsie is a distracted eater, and will mindlessly eat if the tv is on but if it’s off she’ll eat nothing. At the time adding a feeding schedule to our already full medication schedule was just too much for us to take on. We do however try to eat our meals around the same time everyday and always at the table.
Note: They also mentioned if a child has trouble sitting still during meals a pre-meal stretch or exercise routine could be beneficial. It could be something like 10 jumping jacks, or giving them a task, such as setting the table that could help get them into food eating mode.

2. Have Proper Positioning: Children should be properly supported at meals as this will allow them to focus on chewing and eating, rather than keeping themselves upright and stable. They recommended the 90-90-90 position, so that’s sitting upright with their back supported and the angle between their torso and hips at 90 degrees. Then they should have their feet planted firmly either on the floor or a foot rest so that the angle at their knees and ankles are both 90 degrees. Proper positioning also supports the respiratory system and allows better hand-to-mouth coordination.

3. Set a time limit for meals: Meals should not last longer than 30 minutes because at that point they start to burn the calories they’ve just consumed. This one has been really tough for us and for the most part we don’t implement it anymore. Elsie’s a grazer and will literally take 20 minutes to eat one cheese string. It’s painful to watch but we figured that even if she wasn’t gaining anything calorie wise at least she was still physically eating something. I don’t know if this is a good idea but it’s just what we’re comfortable with.

4. Serve your meals family style: They said children were more likely to eat better and more if they had options. So rather than plating the food before bringing it to the table, they recommended just putting it all on the table and letting the child put food on their plate. This gives them control over what and how much they want to eat. Turned out Elsie loved dishing up herself but she wouldn’t stop, she’d just keep piling more on her plate, which she never ate, and then started forcing food on the rest of us. I liked this idea but it just didn’t work for us.

5. Don’t offer rewards: Contrary to what most of us think, apparently bribing children to eat doesn’t work. Offering something like ice cream, only after they eat their veggies, may not motivate a child and actually teaches them that there must be something wrong with veggies. This made a lot of sense to me and I’ve tried not to fall into this but it’s tough. I never realized just how often I did this before, and I know for a fact that it does not motivate Elsie to eat at all.

6. Try to avoid food jagging: A food jag is when a child eats the same thing, the same way, at virtually every meal until they burn out then never eat that food again. Elsie is a classic food jagger and I’m constantly worried about what we’ll feed her after she gets sick of the 5 things she eats everyday. Ideally a child would eat 3 different foods at each meal for 2 days before repeating and anyone who has a child with cystinosis is probably laughing their ass off at this idea. To avoid food jagging they recommended presenting the food in different ways. Even if it’s the same food it could be arranged in a different shape, cooked a different way, or maybe even a different colour by adding food dyes. We tried this for a little bit and then eventually gave up because it was a lot more work on our part.

7. Manage your goals and expectations: This is the most important piece I took away from the whole workshop. As with pretty much everything, in order to have success you need to be clear on your goals. To just say I want my child to eat more food and a larger quantity is way too vague. It needs to be broken down into smaller goals like a) keep a new food on their plate through the whole meal , b) stay at the table the whole time, c) taste one new food this month, etc. You really need to start with baby steps that are simple and easily defined. This way you have a clear plan and path to whatever goal you may have and you won’t get discouraged as easily.

At the workshop they reiterated that implementing the above tips would take time, and improvement may not be seen for months if not years later. But if consistent it would create a routine and set the foundation for a healthy relationship between your child and food. Unfortunately for Dave and I we just didn’t have the patience to be consistent. The thing is though, Elsie is still doing great.

Trying these different things allowed us to learn what did and didn’t work for us and more importantly it allowed me to finally let go of the pain and stress I put myself through over Elsie’s problem feeding. Over time I’ve learned to accept Elsie’s eating habits and work away at the little things that may help set her up for better habits over time. Things like allowing her to choose how much she’ll eat at meals, praising her for eating well, and giving her pediasure when she doesn’t eat enough.

As she’s gotten older we have noticed her eating improve but it’s slow going. Does she get the recommended 1,500 calories per day? No. Does she eat 3 different foods at every meal for 2 days. Hell no. But I’m not worried about it anymore. She’s growing, happy and incredibly healthy right now and that’s what’s really important to me.

My Listen To Your Mother Experience

My Listen to Your Mother Experience

This post originally appeared on The Mighty

I never had an interest in public speaking, in fact I avoided it as much as humanly possible. It always made me think of those times in high school when I had to present a project to the class. My heart beat so fast I could barely breathe and my voice trembled as I tried to rush through the presentation as fast as possible. So it’s no surprise that I never followed any paths that lead towards public speaking in my post-secondary school years. Until my life took a new direction.

Since my daughter’s diagnosis almost 3 years ago, my goals and the way I live my life have dramatically changed. Cystinosis is such a rare disease that most people only hear of it because they know someone affected.

I aim to change that. Though there are only an estimated 2,000 people worldwide living with cystinosis it shouldn’t limit the amount of people we can educate. All we need are people willing to listen.

I began writing about our journey with cystinosis on my personal blog and got the bug for writing about it on other sites after The Mighty published a letter I wrote to cystinosis. I realized that this could be the way I get cystinosis out there and began submitting to parenting sites. I was thrilled to be able to share my stories and spread some awareness to an audience who would have never found their way to my blog on their own.

One day I saw a casting call for the first Listen to Your Mother Vancouver show. A show that invited people to read their stories related to motherhood on stage – in front of a live audience. I knew it would be an incredible opportunity to advocate for my daughter and cystinosis but I immediately dismissed it as something I simply would never be able to do.

But it stayed there in my mind, tugging at my fear of public speaking and daring me to do it anyway. If there’s one thing I’ve learned from my daughter’s diagnosis it’s that this life is fleeting. It’s too short to worry about silly things like what others might think of me. And it’s definitely too short to let my fear stop me from doing what I want, and certainly from doing things I hope will make a difference.

Choking back my fear and the rising urge to hide trembling under my bed covers, I booked myself into an audition spot and began rehearsing like crazy! I’d just written an essay I thought would be perfect. It talked generally about my motherhood journey and my dislike of the phrase, “as long as it’s healthy.” In my opinion it was universal while still a personal testament to my experience.

A couple months later I was surprised to learn that the producers felt the same way! Somehow I managed to make it through my audition without my voice breaking, though I was pretty sure my heart was only seconds away from pushing right out of my chest, and I was now officially a cast member.

On April 30th, 2016 I got on that stage, in front of almost 300 people, with 12 other incredible women, and bared my soul. I told others how much my daughter meant to me and how her disease didn’t make her less than any “healthy” child. I fought back tears when I explained how much joy she brought us and how grateful I was to have her in my life. And I made it through, despite my lifelong fear of public speaking.

At the end of the show I was in the crowd speaking with my friends and family who had come to support me when a woman I’d never met before introduced herself. She started with, “hello,” and then immediately broke into tears. She began telling me about her daughter who had cystic fibrosis and that she completely understood how I felt. She thanked me for sharing my story and I was so at a loss for words that I gave her a hug and thanked her right back.

This show has been one of the most powerful experiences of my life. It started with my desire to raise awareness but ended in me growing as a person, conquering my fear, and connecting with a stranger on a deeply profound level.

And I have my daughter, and ultimately cystinosis, to thank for it. Without them I would have never even started writing and most certainly would not have gotten up on that stage. As difficult as cystinosis can be sometimes, it is now an integral part of our lives and I can’t help but be grateful for some of the lessons it has taught me.

You can read my full “As Long As It’s Healthy.” essay on Coffee + Crumbs.

Listen To Your Mother Vancouver 2016 Cast*Pictures taken by Eran Jayne Photography

 

Tips For Keeping Your Child Cool in the Heat

Tips for Keeping Your Child Cool

A lot of people with cystinosis struggle with thermoregulation; the ability to regulate body temperature. The cause of this is not entirely known. As with most symptoms related to cystinosis, some people experience them and others don’t. A lot of parents have noted that their child doesn’t seem able to sweat, while others state that their child definitely does!

When I was looking into one of Elsie’s CTNS gene mutations, the 57 kb deletion, I found this research report,  The 57 kb deletion in cystinosis patients extends into TRPV1, which stated that the 57 kb deletion not only knocked out the CTNS gene but also extended into the neighbouring TRPV1 gene. It states that the “TRPV1 plays a regulatory role in a number of physiological processes including thermoregulation,” but as far as I can tell no one has investigated this further.

Whatever the reason, we have definitely noticed thermoregulation becoming an issue for Elsie.  Every year it seems to be more difficult for her, whether that’s because she’s getting bigger or just more vocal I’m not sure, but I do know that she is not pleasant to be around when she overheats. Not that a I blame her, being too hot is awful. Living in the Pacific Northwest means we don’t have to deal with it for very long, which is nice but can also be difficult because we don’t have air conditioning in our place and just got the AC fixed in our car last week.

Sometimes we need to get creative and today I wanted to share some of my tips that have made life in the heat a little bit easier for us. I also turned to the cystinosis community for their “insider” tips and found some pretty cool products I hadn’t known about.

  1. Hydrate – Dehydration is a big issue when the heat is on, so making sure our kids are properly hydrated is more important than ever. Elsie is super picky when it comes to her water and can be heard demanding “ice cold” water frequently. We’ve been using the Cool Gear water bottles that have a core you can take out and keep in the freezer when not in use. I found ours at Walmart. Other parents said they used a CamelBak Pack filled with ice and water, a Mist ‘N Sip from O2COOL, and the good ‘ol water bottle that’s been half-filled and placed in the freezer (the key is to leave it on it’s side).
  2. Appropriate Clothing and Accessories – This point we are not so good at. Mostly because Elsie is at that age where she knows what she wants to wear and won’t accept any substitutes. But when I can I try to steer her towards light weight clothing in light colours. A light weight, breathable hat with a good sized rim to keep the sun off their faces will also help but again this is a struggle for us. On the flip side at least Elsie knows what she wants! So I settle for sunglasses and make sure to either put her hair up or in braids so that it’s off her neck.
  3. Sunscreen – This is a bit of a no brainier but important to include none the less. Like Elsie, a lot of people with cystinosis tend to have fair skin and it’s super important to use a high SPF sunscreen and apply regularly throughout the day. Luckily Elsie’s never had a sunburn but I suspect she’s just like her fair skinned dad who burns really fast and really bad.
  4. Stay in the Shade – Whenever possible try to hang out in the shade. We have a 3 sided beach tent that we set up on hot days, this way we can create our own if we can’t find any. The one we have is actually a huge pain to set up so I don’t have a specific type to recommend, however I can recommend that you check out some online reviews before purchasing. You could also use a large golf umbrella which would at least provide enough shade for your child. Or if you have chairs and a beach towel you could hang the towel between two chairs, but this would probably only provide shade for a baby. We used to do that for my family dog, a tiny Bichon Poodle!
  5. Cooling Towels – This I never considered until asking the cystinosis community and it was been one of the best tips ever. Sports and golf stores carry cooling towels that you soak with water, wring them out and then snap to activate. You then place it around your kid’s neck or wherever else they want it. We got ours, the Mission Enduracool, from SportChek just in the quick grab section near the check out tills. A few parents have recommended the Frogg Togg Chilly Pad and the Ergodyne Chill-Its. My only tip is that we were given a knock off version that had the similar foamy pocket surface like the Frogg Toggs and Ergodyne but when it dried it was stiff as a board and we couldn’t roll it back up to put in the plastic carrying case. So one day we rolled it up and put it in it’s case while still damp and the next time we went to use it, it was completely moldy! It was disgusting, so I’d recommend sticking to towel brands that have good reviews.
  6. Other Cooling Accessories – Other little items you can bring with you that are super helpful are spray bottles and fans, or both combined! I saw a spray bottle with a battery operated fan attached to the nozzle at Michaels the other week and am now kicking myself that I didn’t buy it. But you can also get spray bottles and usually little hand held fans from any Dollar Store. The key is to look for a spray bottle you can set to mist. We actually got Elsie a little Frozen hand held fan from Toys R Us and they even had ones attached to tubes of candy.
    Ways to Keep Cool - Water Play
  7. Water Play – Look for ways that your kids can play with water. Earlier this summer we had one of our best afternoons just playing with a hose, a $2 mini pool and some Tupperware containers in the courtyard. You could also take your kids to a water park, splash pad or outdoor pool. Or play with water guns, slip n slides, water play tables, water balloons, sprinklers, fill a big bucket full of water, or anything else you can think of. Water play doesn’t have to be an expensive outing and most kids love playing with water! Even just a cool bath on a hot day can work wonders.
  8. Keep Your Car Cool – If you’re like we used to be and don’t have air conditioning in your car there are still little things you can do to try keep the internal temperature down. We always try to park in the shade and usually leave a couple windows slightly cracked open. We have roller shades in both back passenger windows to block out the sun for the kids and when we park we put a reflective car shade in the windshield and another one over Elsie’s car seat so that the buckles and straps aren’t blistering hot when she gets in. I saw a post on Facebook where a woman put an ice pack in a Ziploc bag and buckled it into the car seat to keep the buckles cool. It’d be a useful way to use the ice packs we get from all the medication shipments! Another parent said they used a car fan that you could plug into the cigarette lighter, which she put between the front seats so that more air made it to the back, and after checking out car fans on Amazon.ca I can see there’s some pretty cool products out there.
  9. Keep Their Bedroom Cool – Elsie gets really hot when she sleeps and usually she has all the covers pushed aside when we come to give her cystagon at 1:30am. Last summer we installed a ceiling fan in her room and we also use a portable fan pointed towards the bed to help keep her cool. One mom in the cystinosis community has been struggling with keeping her daughter cool during the night and found two pretty cool products, a Gel Cool Pillow and a Bed Fan. We haven’t tried either yet but they are top of the list if Elsie gets too hot. I’ve also seen these Thermal Aid stuffed animals advertised, which can be used as heating and cooling pads for kids to snuggle with. And one of the best tips is to use natural fiber sheets, like cotton. They will breathe the best and wick moisture away.

Of course my favourite way to stay cool in the heat is to head to 7-Eleven and get a slurpee! But for children, water is always best (okay who am I kidding, that’s true for adults too) and my kids are too young to be drinking slurpees anyway.

I hope that you find some of these tips useful and I would love to hear any tips that others may have, so if you know of a cool product or even a super obvious tip that I missed please leave it below in the comments.

Stay cool everybody!

Help Layla’s Wish Come True

BC - PTP Social Image

On Sunday July 10th, The Children’s Wish Foundation is hosting the 5th Annual Princess and Pirates Tea Party, right here in the Lower Mainland!

The Princess & Pirates Tea Party raises funds for wish granting and is also an opportunity for children to welcome a little magic into their lives and let their creativity run wild! It includes a magical afternoon of high tea and treats, as well as a variety of activities and entertainment aimed at bringing the imaginations of young princesses, pirates, kings, and queens to life with an unforgettable, enchanting experience.

It will be taking place at the Cascades Casino Convention Centre Resort in Langley from 11:30am to 2pm.

Elsie and I were super excited when we heard of this event, and she’s already picked out her outfit (spoiler alert: she’ll be going as Elsa from Frozen). Tickets  are $25 each, and children under the age of three get in for free! We thought about inviting Linden and Daddy along but we might just make it a girls date.

layla

This year’s event will be raising funds for this little cutie, Langley local, Layla. Layla is a kind-hearted and brave young girl who loves dancing, exploring, and having fun with her older sisters. She was born with Down syndrome and various birth defects that required multiple surgeries at a young age. When she was only 20 months old, she was diagnosed with Acute Myeloid Leukemia and was only able to see her sisters once or twice a month.

Layla is now a healthy and strong five year old and is nearing three years in remission. Now that her health will allow it, Layla’s wish is to travel to Disney’s Aulani Resort in Hawaii with her family.

Tickets for the Princess and Pirate Tea Party and more info on the event can be found on their website: www.childrenswish.ca/princessteaparty. The Children’s Wish Foundation, Elsie and I hope you’ll join us for an adorable afternoon of everything princess and pirate to celebrate the joy of wish granting.

Would you like to attend this incredible event?

I’m running a draw prize from now until July 1st and the winner will receive this prize package (vauled at over $200):

Participation is super easy! Simply post a picture of your favourite princess or pirate (costume not required, adults welcome too) on social media. If you’d rather not post a picture you can also share this post to enter, or do both for extra entries!

Tag me, @elsinosis on Facebook, Instagram or Twitter, and The Children’s Wish Foundation, @ChildrensWishBC on Facebook and Instagram, @cwfbc on Twitter, in your posts. This step is very important otherwise I won’t know that you’ve shared a picture or this post (note on Facebook your post needs to be public for me to see it).

From today until Friday July 1st every post and tag will count as an entry into the draw. The winner will be announced on Monday July 4th and then we can party together at the Princess Tea Party!

Thank you so much, in advance, to everyone who helps to spread the word and raise some money for Layla and The Children’s Wish Foundation ❤

 

Tiny Superheroes

Tiny Superheroes

A few weeks ago I was browsing Instagram and stumbled across the TinySuperheroes feed and immediately got that excited feeling I get when I see every day people doing beautiful things for warrior children. There was picture after picture of cute and adorable kids all in superhero capes and their enormous smiles said it all. As did the description, “TinySuperheroes seeks to empower Extraordinary kids who exemplify strength & determination as they overcome illness or disability.” I went to the website to find out more and within 10 minutes had sent in my application for Elsie to join the squad and receive her own cape.

TinySuperheroes was started by Robyn, a mother to two children, neither of whom have a disability or illness I believe. What started out as a birthday gift for her nephew, turned into a gift for a special little girl named Brenna who has Harlequin Ichthyosis, and TinySuperheroes was born. The way it works is for every cape sold, $5 will go towards a cape for a child that has been nominated to receive one. $30 will cover the cost of 1 cape so there’s also the option to donate money so that children on the wait list can receive one sooner. Here is a great video about what Tiny SuperHeroes is all about.

Usually they have quite the long wait list so I was surprised when not two weeks later I received an email to say that something super was coming our way. The rest of the story is probably best described in pictures

As you can see Elsie absolutely loves her cape and declared within the first 10 minutes that she wanted to wear it forever! She wore it to the park and while riding her bike and loved whenever someone would ask her about her cape. She’s also quite protective of it and doesn’t like her brother touching it so once he gets a little older I’m gonna have to buy him his own, and perhaps make an extra donation. If you’re not interested in a cape but would like to help a child on the wait list get their cape a little faster you can donate on their website here.

Thank you so much to Robyn at TinySuperheroes for recognizing just how courageous children facing illness and disability are and giving them the physical proof that they can show the world. You are making a big difference in these children and their family’s lives.

It’s been quite a while since I gave an update on Super Elsie but that’s because she’s been doing really good lately! At our visit to the renal clinic in April everything looked great. Her protein/creatinine ratio came back down to 316 g/mmol after starting Enalapril in January and she gained 1.15kg in three months, which we were so happy about. Unfortunately the next day she got really sick and we had to take her the ER to treat her for dehydration because she wasn’t able to take anything in or keep anything down. Since then she’s refused to drink any water with DuoCal in it so I don’t think her weight gain will be as great when we see them again in July.

However, slowly but surely I’ve noticed her eating seems to be getting better. She still only eats a small variety of food and tends to eat the same 3 foods for days but the volume she takes in is quietly getting larger. Not always, but every now and then she’ll eat everything on her plate and ask for more. She’s recently become a pasta fiend and usually eats a ton so that always makes me smile. I would say 75% of the time she still eats like a little bird, slowly picking at tiny amount on her plate, but that 15% of eating well is giving me so much hope for the future!