Archive | Uncategorized RSS feed for this section

The Joys of Preschool

16 Sep

Ladybug started her first morning of Preschool on September 5, 2013   We tossed around the idea of starting her in Junior Kindergarten, but decided it would be best to wait so she can start year one at the best school imaginable for her.

The day before she was to start Preschool, I received a phone call letting me know that for the next 3 + weeks there would be no teacher’s assistant for Ladybug.  At first, I’ll admit, I was furious. Really! The day before school you call to tell me this?!? Then the teacher in me thought it would be a great opportunity to see first hand how the school is run.  I could talk to the kids about Ladybug and encourage them to ask questions and feel comfortable with her. I suppose it was a blessing in disguise – the kids loved hearing about Ladybug’s Squiggles wheelchair and her Special Tomato Chair. There were several little ones who were immediately drawn to Ladybug and coloured pictures for her, wanted to sit next to her during circle or even just wanted to hold her hand to see her smile.

1st Day of Preschool

The Preschool is amazing, the teachers are great, the kids are incredible and the germs…..well….there is no escaping them.

Before school started I used to turn the opposite direction if there was someone coughing near Ladybug. I never left home without sanitizer or wipes because I knew how detrimental a simple common cold could be to my little bugs body. It took every fiber of my being to relax that first day when a little girl kept sneezing and then sharing her toys with Ladybug. My first instinct was to run for the wipes and wash her hands, but this is big girl school now. I had to put on a brave face and save the wipes until the morning was over.

As much as I and many other parents of medically fragile children would like to keep our kiddos in bubbles, there comes a time when I have to trust that her body will eventually build enough of an immunity to fight these bugs without needing to be admitted to the hospital. That being said – outside of school is back to my rules. If your kiddo is barking like a seal, has neon coloured substances running out of their nose, or has a temperature for any reason aside from teething – please cancel your visit or playdate until everyone is fully healthy. I may be brave when it comes to school because they have rules set in place about attendance if your child is sick, but you best believe mama bear will come out if you knowingly bring a sick child to my house.

3 a.m. the Saturday morning after her first two days of Preschool,  I woke up to the frustratingly familiar sound of croup. Not a big deal – I was expecting it eventually.  The usual course for Ladybug is: croup, then cold, then fever, then coughs up yucky stuff ,then gets better. Somewhere in this pattern things took a wrong turn and Ladybug ended up with Bronchitis and became quite sick.

It’s been over a week since this preschool germ started. One day I feel that she is kicking its butt, then the next feels like we’ve taken two steps back. However, if I know one thing it’s that Ladybug is one heck of a fighter and she will get through this bug and be stronger because of it. (Daddy-o…don’t worry she’ll build up enough immunity this year at Preschool to have a perfect attendance for year 1 of Elementary School)

3 Years and Thriving!

23 Aug

It’s almost unimaginable to think that 3 years ago today I joined the blogging world. What’s even more incredible is how far not only my little Ladybug has come but how far I have come.  3 years ago I was struggling with the biggest fear of all – possibly losing my baby girl. Ladybug was so fragile and so sick, all I wanted was a little a peace of mind. I tend to keep my emotions inside until I can comprehend and make sense of everything, but I was becoming so overwhelmed. I knew I needed an outlet and it was on August 23, 2010 I found mine. Beginnings. 

Today for the first time since Ladybugs Mic-Key G-Tube was put in, it came out.  The nurse brought Ladybug to me in one arm and the Mic-Key in the other. The inflatable balloon portion was still inflated. All that went through my mind was I can’t let the hole close up. I went into super mom mode grabbed Ladybug, grabbed a spare tube set, took off her dress and saw for the first time this teeny tiny, itty bitty hole where the tube should be. I had a dear friend whose daughter also has a Mic-Key briefly talk about how she has had to put a new tube in at the craziest of times so I tried to remember what to do. I picked up the shiny new Mic-Key and after a little bit of wiggling I popped it right back into the hole, then inflated the balloon with sterile water to hopefully keep this sucker in its place.

After all was said and done and many cuddles were given I looked down at the old tube still inflated and my heart broke. It must have hurt so much, but my little Ladybug calmed as soon as I began to put the new tube in.

3 years ago I never could have imagined changing a G-Tube let alone changing one by myself.  At that point I was still grasping bolus feeds with a 60CC syringe through her NG tube and we were months away from getting her CDG diagnosis.

Ladybug has been doing quite well and will be starting school part-time this September. The time has flown by and I am ever so excited to see what new adventures the next 3 years will bring. I’m sure by then I’ll be able to change a Mic-Key tube with my eyes closed, one hand behind my back, and balancing on one leg.

DSC_0020DSC_0027

149819_10150307692100106_665770105_15608415_3359094_nDSC_0540

DSC_0158DSC_0313

cuba trip Nikon1 078

DSC_0038

Tags: , , , , ,

Miracle Treat Day!

8 Aug

DQ

On Thursday August 8th, 2013, all proceeds from every Blizzard®Treat purchased at participating DQ® stores will be donated to your local Children’s Miracle Network® member hospital.

For us that hospital is Mac Kids.  I will never forget our first DQ Miracle Treat Day experience – it was during one of Ladybugs longest hospital stays and I was overwhelmed with uncertainty and beyond exhausted. One of the nurses came up to me and said “Happy Miracle Treat Day!” To which I replied thanks. Not having any clue what she was talking about. She then told me that the local Dairy Queen had brought in Blizzard®Treats for all the children and parents who were staying in the hospital. Let me tell you there is nothing like ice cream and sugar to boost ones morale. It was by far the best Blizzard®Treat I have ever had. I’m looking forward to heading out this evening to enjoy my Blizzard®Treat in support of the Children’s Miracle Network and Mac Kids.

Since 1984 DQ Canada has raised over $20 million in support of Children’s Miracle Network. Let’s make 2013 a record-breaking year! Join DQ and help make miracles happen.
https://www.facebook.com/events/617893501563309/

Tags: , , , , , ,

One Smile

7 Aug

I know that I’ve written a few times about the special bond between parents who have children in the hospital, however, I couldn’t help but dive a little bit further into a secret society of moms who have children with special needs.

Yesterday while leaving an appointment at Mac Kids (all is good) I noticed a mama of two beautiful children who just happened to be in wheelchairs. While I was walking towards our vehicle she looked at me and smiled, I smiled back and carried on putting Ladybug in her car seat.  As odd to some as it may sound when we looked at each other and then at each others beautiful kiddos and smiled I felt like I had made an instant friend who I could talk to about anything.

This isn’t the first time this has happened either. Last year while waiting to see Ladybugs orthopedic surgeon I opted to sit outside the clinic as it was jam-packed with kids and parents.  Sitting next to me was the most beautiful young women ever. She had gorgeous long wavy red hair, stylish clothes, a beaded necklace, cool wheelchair and feeding tube. When I looked at her I saw Ladybug in 10-15 years. The conversation with her mom started with the wait time to see the doc.  Within the 1/2 hour we sat next to each other we talked about everything from feeding tubes, relationships, different types of therapy options and on and on and on. I felt such a connection to this mama that when it was time for her to leave we exchanged email addresses, hugged and I cried. It was one of the first moments I felt like I was a part of a very not so secret, secret society.

A society where it’s perfectly acceptable to ask a stranger what they think about the government provided therapies or lack there of for our children,  how much their wheelchair conversion van cost or how has their relationship held up over the years. Yep, that’s right!  I have asked all of these questions to women who 5 minutes before the “I know what you are going through smile”  was exchanged we were complete strangers.

Only another tubie mama can relate to and laugh with you when you tell them you were cleaning formula off of the walls and ceiling. Only another mama of a child who is unable to speak will tear up when you tell them your daughter is now waving to her friends during the “hello everybody” song at the Library story-time.  Only a mama whose child is in a wheelchair knows how infuriating it is to have to bring your child out-of-town to go to a wheelchair accessible school or playground.

All it takes is that one warm-hearted I know what you’re going through smile from a complete stranger to uplift you and brighten your day.

Thank you J* for letting me peek inside your very cool multi wheelchair accessible van, for being an amazing mama to those 4 children and for inspiring not only this blog post but me as well.

Tags: ,

Fighting the System

26 Jul

When we began looking at custom equipment for Ladybug a couple of years ago, I never imagined having to search for funding options due to the exorbitant Canadian prices, let alone fighting to get these much-needed items.

After pushing for over 1 1/2 years Ladybug finally got her custom standing frame last week.  One would think that if several specialists state that your child really needs a specific piece of equipment that the supporting team (physiotherapist/occupational therapist) would naturally be on board.  I guess I was living in this wonderful medical dream world where when my daughter needs a standing frame we try a few out see how she does and order the one that best suits her.  This wasn’t the case – at least not for the first year.  Ladybugs support team initially told me that the standing frame would be detrimental to Ladybugs body, and would not be suitable at the time as she was not weight-bearing and had little to no head and trunk control.  4 months later we went to see the orthopaedic surgeon (amazing, amazing, amazing doctor). Again, she asked why Ladybug still didn’t have a standing frame – I explained what the physio/occupational therapy team told me and she proceeded to write a note stating that it is very important not only for muscular development but also bone development that she get a standing frame.

This wasn’t just something I woke up one day and said “I think I’ll get Ladybug a standing frame because they look cool and a lot of her CDG friends have them.” I did my research, talked to private physiotherapists, other parents, and ALL of Ladybugs specialists were pushing for her to get one.

I’ve come to learn that this is all a part of the system. Everyone flexing their proverbial muscles to see who is the biggest, strongest and smartest.  Let me tell you,  just because this system exists doesn’t mean you can’t stand up and fight it. You know your child better than any doctor,  physiotherapist or occupational therapist. Don’t leave things up to a professional who sees your child a few times a year to tell you what your child can’t do. All they see is what she can’t do. I see Ladybug as what she will do and how I can foster these skills to make things happen.

I think my breaking point came when I  met with Ladybug’s neurologist who said enough is enough. Ladybug needs a standing frame – this is developmentally necessary and it’s obvious that her body and mind want to stand so she needs the tools to help this.

I would almost describe my transformation as Incredible Hulk like. I’m not the type of person who enjoys confrontation, that is until it comes to my daughter. Our next physio appointment I came prepared – I brought doctors letters, pictures of children nearly identical to Ladybug in a stander, and statements from other parents saying how much the stander has helped their child. I was not backing down. It was pretty much the same song and dance until there was an agreement  to try her in an old “Hannibal Lector” style stander they had sitting in a back room. It was dusted off, Ladybug was put in it, it was raised up and VOILA!!!! Ladybug loved it. She was weight-bearing, had great head control and best of all was the surprised look on the therapists face as she said “She’s doing really well in the standing frame.” I wanted so badly to stomp my feet and say I told you so. But the grown adult in me subtly chuckled inside. I’m certain I had the biggest “I was right” and “I’m so proud of my little princess” smile on my face though.

After bringing in a couple new standers for Ladybug to try out, the best fit was the Leckey Squiggles Standing Frame. It’s by the same company as her wheel chair and even came in pink.

DSC_0219

Ladybug still has a bit of growing in the length department so she can properly use the tray – until then we’ll try to rig something up so she can enjoy playing while standing.

IMG_4345

I don’t think it matters to her though, she absolutely loves being in the standing frame.  I’m certain with time more and more milestones will be reached, all because I didn’t back down and in the end had the strongest muscles to fight the system.

Tags:

3 Words You’ll Never Hear Me Say

12 Jul

I can’t count the number of times I’ve noticed these 3 words on someones Facebook status or have heard them mentioned in a conversation. I can however tell you that it drives me absolutely, positively bonkers when I hear or read them.

What three words in our English language could possibly irk me enough to write about?

“My Life Sucks!”

I’ll admit I’ve had my low times. You know the ones I’m talking about – where you feel like you just can’t catch a break, it’s one thing after another, and nothing ever seems to go your way.

I don’t think there is a single person out there who hasn’t experienced one if not all of these feelings. It’s how you cope and handle these situations that will determine if you get through them.

A long time ago I discovered that it is all about perspective. No matter how bad I think I have it, there is always another person out there who has it a million times worse – and you can bet your ass they aren’t going around saying “my life sucks!”

Household appliances can be replaced, cars can be fixed, relationships can be mended & broken hearts do heal with time.

Next time you feel like saying “my life sucks” volunteer at the local children’s hospital or just turn on the news. Imagine for one second that your child was diagnosed with a fatal/incurable disease, your home had just been washed away by flood waters or your entire life was being ripped to shreds by war. That broken dishwasher, flat tire, family feud and break-up will all of a sudden pale in comparison.

 

Soccer

Tags:

Discovering CDG SLC35A2: A Parents Perspective

5 Jul

CDG SLC35A2

Even though it’s been a few months since we were first told  that Ladybug has CDG SLC35A2 I still find myself in awe of it all. In my previous post I mentioned there was more to it that I wasn’t ready to talk about. From the initial diagnosis we were told that CDG was a genetic disorder and that Ladybugs father and myself were carriers. Makes sense! With CDG there is a 1 in 4 chance that a subsequent child will also have CDG. I was heartbroken. For as long as I could remember I wanted at least 2-3 children. I’m not the gambling type and was far too worried about putting another child through the pain that Ladybug had been through, so we decided she would be our only child. It was always so difficult to hear of others around me becoming pregnant because it was a constant reminder of what I would never be able to experience again. I desperately wanted to be able to enjoy a worry free pregnancy like those around me, and this would often bring me to tears. Now 1.5 years later I had come to accept this and we began the long process to become foster parents.

CDG SLC35A2 is caused by spontaneous somatic mosaic mutations in the X-linked gene. I’ll break it down for everyone.

Spontaneous or “de novo” – a genetic mutation that neither parent possessed nor transmitted.

Somatic – ‘of the body’ Post fertilization.
Mosaic – Two different types of cells – For the boys 1X chromosome and 1Y (flashback to biology class). In their X-chromosome, there are normal cells and CDG SLC35A2 cells – With Ladybug having 2X chromosomes 1 has the mutation and 1 doesn’t.

“But sometimes that normal X is randomly inactivated. This is called X-linked inactivation and all females have this. It’s mother natures way of making sure males and females only have 1 active X-chromosome.” Bobby Ng Sanford-Burnham

X-linked Gene – The Gene is on the X- chromosome.

The most significant finding of Ladybugs diagnosis in my point of view, is what Bobby (one of our CDG superheros) from Sanford-Burnham Medical Research Institute told us:

“We have confirmed that all parents and unaffected siblings do not contain mutations.”

I think I have read and re-read this one sentence dozens upon dozens of times and even now it hasn’t quite sunk in. For the past year and a half, I fought through tears and heartache while I came to terms with not having another child. Then BAM!!!!!! Just like that everything was different. In that first 24 hours my thoughts went from oh my gosh let’s have another baby, to – this spontaneous somatic mosaic mutation happened once what if it happens again?

I have many dear friends who are fighting with infertility and aren’t able to have children. The dichotomy of it all is that there are moments I feel like it’s trivial to be so upset about this. I should be happy I was able to have at least one child and leave it like that. Right?!?!?

To be honest, because it’s a new discovery there are still so many unknowns and the whole thought of trying for a second baby scares the bejeebers out of me.  Not only because of the risk of more miscarriages, but there is also a chance that Ladybug’s CDG may have been caused by a germ line mosaicism – when either the egg or the sperm have the mutation.(Not good) As opposed to a somatic – Post fertilization. (A little better) It’s hard to know for sure unless we spend tens of thousands of dollars on having this tested or take a leap of faith and try again.

For now I’ll leave everything in the hands of the universe, and be thankful everyday that I have my beautiful little Ladybug.
Halloween 2010 Mac Kids ICU

Tags: , , , ,

1 in 7 Billion

23 May

7 Billion The current worlds population (and growing)

3 The number of incredible children in the world who share a new type of CDG.

1 The number of girls in the whole wide world who have this new type of CDG.

That 1 girl is my beautiful Ladybug.

Several months ago we received an email that essentially changed our lives. When Ladybug was first diagnosed with CDG we pleaded with the Ministry of Health (Canadian Government) to cover a genetic test for her. Their response was and I quote “what difference will it make”. The governments thought was it won’t change her prognosis so what’s the point.

I was devastated that our “wonderful”, “fabulous” Canadian health care system had the gall to say that. Many thoughts crossed my mind – write to local and provincial politicians, call this woman at the Ministry of Health and tell her exactly why it was so important. Not long after I got my first taste of what it would be like to fight for my daughters rights, a post was made in a CDG group I belong to. The Sanford Burnham Institute was asking us to contact them if we would be interested in further testing to discover our children’s subtypes. It’s so cliché , yet so true … “ When one door closes, another opens ”

Now I had to try to convince our genetics team to take samples and send them to California. Fortunately our entire team at Mc Master Children’s hospital are phenomenal so they didn’t even give it a second thought.

Fast forward many, many months and the email arrived. The initial email was incredibly cryptic and read something like. We’ve made a discovery. stop. It’s a pretty big deal. stop. Can’t say too much now but will let you know soon. stop. Of course I might be exaggerating a teeny tiny bit. But that’s what it felt like.

The first portion of the HUGE news was that Ladybugs little friend in Jolly Ol’ England was indeed the same subtype as she. DUH…..yes I just said duh! We (being the two parents) have felt this in our hearts the moment we began chatting and sharing pictures of our kids. Then there was a third little boy who was also the same subtype from the USA.

Here is a picture from the Sanford-Burnham Science Blog – The Beaker that featured our 3 special kiddos. The new CDG finding was also published in The American Journal of Human Genetics and Science Daily to name a few. If anyone would like to see these please feel free to email me.
264428_10151424814447636_28861166_n

The next portion of news was that these three beautiful children – whom I love to bits, have a brand new type of CDG. CDG SLC35A2. This explanation will require a blog post of its own which will come soon.

It was and still is A LOT to take in. There were quite a few new developments on top of how rare she really is that I’m still trying to digest, and when the time is right I will share them with everyone.

Tags: , , , , , ,

Purple Day

26 Mar

Today, March 26 2013 marks the 1st official PURPLE DAY in Canada.

Purple Day 2013

Purple Day was first recognized as the official day for epilepsy awareness in Canada on June 28, 2012, in an Act of Parliament put forward by the Hon. Geoff Regan, M.P. for Halifax West. Bill C-278 met with resounding all-party support and became the only legislation of its kind in Canada. The Act demonstrates meaningful support to the 300,000 Canadians living with epilepsy and helps to reduce the stigma and discrimination that is often associated with the disorder.

You can read more about this amazing day in Canada here at the Canadian Epilepsy Alliance website.

For those of you who aren’t familiar with Purple Day, it was created by a young girl – Cassidy Megan from Nova Scotia, Canada in 2008.  Cassidy created the idea of Purple Day to share her own struggles with seizures and to get people talking about epilepsy.

Epilepsy affects over 300,000 Canadians and over 50 million people worldwide. My little ladybug is one of those people.

I’ve not really written much about her seizures, but couldn’t think of a better day than Purple Day to begin.  One of the characteristics of many children with Congenital Disorders of Glycosylation CDG is epilepsy. When most think of seizures they tend to think of what is known as a Tonic Clonic or Grand Mal seizure which is often depicted on tv and in the movies. Truth is there are dozens upon dozens of types of seizures.

Ladybug has what are known as Myoclonic Seizures. (myo meaning “muscle”, clonic meaning “jerk”) These result in an increase in muscle tone.   Those suffering from myoclonic seizures typically react as if hit by a single jolt of electricity.  Usually in Ladybugs case her arm or arm and legs stiffen up and go straight out and her eyes are wide open and look up and to the left side.  These “episodes” happen anywhere from 1 to 10+ times a day, every day.  As each person is different it is a big gamble as to which medication will work.  Initially the doctors tried one called Vigabatrin. We were told it would make her a little groggy.  That was a huge understatement.  Thank heavens she was in the hospital because after 2 doses she went into a coma like state and we were unable to wake her up for several hours. She has since been taking Keppra (Levetiracetam) and the dosage has been slowly increased over the past year and a half. Up until this past month I hadn’t really noticed a difference in the quantity or length of the episodes, I say this because with this last itty bitty med increase she is down to under 3 noticeable seizures a day.

Myoclonic seizures are often only one manifestation of a mixed seizure disorder, and they can be very serious. For this reason we see Ladybugs Neurology team every 4-6 months and monitor and record her seizure activity daily.

Along with the decrease in noticeable seizures, Ladybug is also healing very nicely following her port removal and Mic-Key insertion two weeks ago. I must also add, that as of today she is  a whopping 20 pounds and 28 inches in length!!!!  Even though her little princess diva attitude is becoming more prominent as days go by, I’m so happy for each and every one of these little milestones.

Ladybug in all her glory wearing a purple dress for Purple Day.

DSC_1078

Tags: , , , , ,

Pembe Bear

12 Mar

Tonight Ladybug helped me pack her very special hospital bag.  The bag was filled with necessities like diapers, wipes, pj’s, and a cuddly blanket. There was one more item in this bag that is by far the most important – it is a very special little bear known in our house as Pembe Bear.  Now Pembe bear has been with Ladybug since she was first-born, it is always by her side during each and every hospital stay, and even has its own medical bracelet to match Ladybugs.

DSC_1021

Just in case you were wondering, Pembe is Pink in Turkish.  It was one of the first words I picked up when I lived in Turkey, well that and Otur which means sit down.  As a kindergarten teacher this came in very handy with a class full of 4/5 year olds.

Back to Pembe Bear – PB has never missed a hospital stay or surgery and tomorrow Ladybug is scheduled for surgery.  Her PEG G-Tube will be replaced with a “big girl” Mic-Key G-Tube, and if all goes well and they are able to find a good line Ladybugs Port-a-Cath will be removed completely. If they aren’t able to find a good line there is a chance a new port-a-cath will be put in its place. I’m obviously hoping for the first.

I will be sure to post updates after the surgery.

Tags: , , , ,

← Older Entries
Newer Entries →