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On The Board

26 Feb

For a few months I’ve been debating on how to title this post.  I love the clever use of words, and my initial thought was “3+1=4”.  Then I realized that if I use this title my phone and Facebook account would be inundated with messages of congratulations/are you pregnant?  I’ll nip that theory in the bud right now to say that I am not with child.

Not exactly that is.

Before our little Ladybug was born we were in a very unsure place about fulfilling our dreams of becoming parents.  After back to back  miscarriages I questioned whether I’d be able to carry to term.  We began to explore adoption both within Canada and around the world.  Lo and behold, shortly after I became pregnant – and against all odds gave birth to a very special little Ladybug.

The thought of having multiple children never really left and as Ladybug gets older, I’ve begun to see how much she enjoys being around children.

While looking into adoption once again we dove into a world I never thought to explore – but one that would be the perfect fit for our family.

Fostering.

There are so many children who need temporary loving, stable homes – I knew it was the path for us. I will be honest it has been a long….very long path to bring us here.  Nearly a year of training courses, interviews, meetings, and diving into our pasts with a fine tooth comb. Yesterday, February 25, 2013 I received the call that we are officially “On The Board”.  I’ve been yearning to hear those words for months, and couldn’t help but blast some music and dance around the house with Ladybug in celebration.

On the board means exactly that. Our names have been placed on a big board stating that we are available to take a child immediately. I’ve been preparing/child proofing our home for several months now, guest rooms have been moved around and a room fit for a princess or prince was created. I’m incredibly excited to watch Ladybug interact with her new sibling(s), and think it will be a fantastic experience for her and the children to learn about tolerance, acceptance, and love.

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I also want to send a huge thank you to our family and friends who took the time to write references, watch Ladybug, and share in our journey thus far.  We are who we are because of all of you.  I especially want to thank a dear friend Nicole. Nic, I’ve known you since we were “Rockin’ Robins” and am so grateful for the guidance you’ve given and the willingness to receive numerous text messages and emails before and during the process of becoming a foster parent.  Thank you.  xoxo

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Feeding Tube Awareness Video

10 Feb

To kick off the 2013 Feeding Tube Awareness Week, I would love to share this official video created by The Feeding Tube Awareness Foundation.

My favorite quote is about formula getting on the ceiling and being able to laugh about it. It’s nice to know we’re not alone in this.

Can you spot Ladybug in the video?

Official 2013 Feeding Tube Awareness Video

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Feeding Tube Awareness Week

9 Feb

This coming week which is February 10-16th, 2013 is

FEEDING TUBE AWARENESS WEEK!

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Feeding Tube Awareness Week was first launched in February 2011 By the Feeding Tube Awareness Foundation.

Each year the week focuses on a few topic areas designed to give parents, caregivers and tube feeders the opportunity to share their experiences with tube feeding with friends and family through social networking sites, blogs, viral and traditional media. Increasingly, parents and siblings have been using Awareness Week to give presentations in their children’s classrooms.

Long before the CDG diagnosis came to light, Ladybug was diagnosed with failure to thrive. Failure to thrive (FTT) is a term given to infants and children who do not meet the growth rate that his or her peers meet. Yes, it is a bit of a generic description but one that we dealt with for quite a while. Basically Ladybug was showing signs of severe reflux or GERD(Gastroesophageal Reflux Disease), and was refusing to eat anything. It was at 1.5 months that Ladybugs first feeding tube was put in.  The lovely NG Tube (Naso Gastric) This tube runs directly from the nose to the stomach.

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What started as a quick fix to help her gain some weight became an everyday part of our lives.  The NG tube truly was a lifesaver for Ladybug, and for the first few months she didn’t bother with it.  That is until she learned it only took a split second to pull it out. It didn’t matter how we taped it, what type of tape we used, or even how much tape we used, those teeny tiny fingers always managed to pull that tube out. After numerous trips to the ER to have the tube put back in, we began to discuss with the doctors about a G-Tube.  The G-Tube (Gastric Tube) is surgically placed into the stomach. Seeing as Ladybug still wasn’t eating orally and was beginning to throw up often it was the obvious next step.

The G-Tube was inserted in October 2010. Ironically this occurred the same month she had a GI bleed, bowel resection, port insertion and the CDG diagnosis.  October 2010 was a very emotional month to say the least.

Even though Ladybug is slowly starting to try food orally, sippy cup with water, Breton Crackers, squash and chocolate, the G-Tube is her sole source of nutrition. Thanks to the G-Tube and an amazing dietician, she is also steadily gaining weight according to her very own growth curve. The other great thing about Ladybug being a “Tubie” is that her best friend has one as well.  “Bean” the other Diva of 3C at Mac Kids is always excited to see Ladybug and compare their identical feeding tube clamps.

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Another tubie mom couldn’t have said it better when she posted that she would rather questions about our kiddies tubes than stares.  I truly LOVE when little kids look at Ladybugs feeding tube attached to a little backpack inquisitively.  I can only imagine what their honest minds are thinking.  I always give them a smile if only to let them know it’s ok to be curious.  The teacher in me can’t wait for a chance to explain what it is not only to the kids but also the parents.  If I can pass on anything it’s for adults to remember the inquisitive little child within. Don’t ever be afraid to ask questions – the majority of people are more than happy to answer them.

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International Day of Acceptance

20 Jan

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January 20th marks the
International Day of Acceptance.

A day to educate, shout from mountain tops (only if possible), tweet, blog, and create Facebook pages on how we can achieve social acceptance and awareness of disability. A day to honour the late  Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance.

According to the Oxford Dictionary, the definition of Acceptance is as follows: the action or process of being received as adequate or suitable, typically to be admitted into a group.   Adequate or suitable? Not exactly what acceptance means to me, and it’s not what acceptance means to the incredible people at 3E Love. Truth be told I much prefer the definition below.  

What is acceptance?

Acceptance is an Empowered movement that Educates others to Embrace diversity and Love life by seeing beyond abilities.  

Friends, tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life; a person who is empowered to make a difference in the world and not be without a voice in society. You are not living disabled, you are living.

To our supporters, join us in telling the world that you are accepting of people with disabilities. As our parents, siblings, relatives, spouses, children, lovers, coworkers, teachers, personal assistants, friends, and anyone else – you also have a role in our culture and life. And you can have an impact on the future if you demonstrate your acceptance to others.

Let’s join together to:
Embrace diversity. Educate your community. Empower each other. Love life.


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 The 3E Love Symbol was designed by Annie Hopkins who also cofounded the company with her brother Stevie Hopkins.  Both Annie and her brother Stevie have Spinal Muscular Atrophy Type 2. Annie passed away from complications in 2009. Stevie has continued to guide the company in honour of his beautiful sister Annie.

 

Meaning of Symbol

3E Love’s registered trademark, the “International Symbol of Acceptance” also known as the “wheelchair-heart logo,” is the drive behind much of the company’s goals and products. It is a symbol of society accepting people with disabilities as equals and a symbol that people with disabilities accept their challenges and even embrace them. By replacing the wheel with a heart, the stigma of the wheelchair is also removed, and it can be a symbol for people with any disability or impairment. It represents the person, not society’s perception of him or her.

The 3 E’s in their name are powerful to everyone including myself on so many levels. Embrace, Educate, and Empower.

Please take a moment to check out their website 3E LOVE.

If you like shopping then you will LOVE  the 3E store!  I already see several purchases from there in the near future. I’m thinking a cool decal for Ladybugs Squiggles, and a pink tee for this mama.

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Happy 3rd Birthday Ladybug!

3 Dec

Today my beautiful (not so) little Ladybug celebrated her 3rd birthday.DSC_0818

It was such a brilliant day for us. During an early morning trip to town several people commented on how adorable she is, then proceeded to ask “how old is she?”.  I’m not sure which filled me with more joy, watching the looks on their faces when I proudly proclaimed today she turned 3 years old. Or being able to proudly proclaim that my beautiful miracle is in fact 3 years old.

This birthday was incredibly special on so many levels.  Three was the age that Ladybug wasn’t supposed to live to be, according to some doctors. I’m happy to say that she is strong, healthy and thriving.  It also marked her “Champagne Birthday” meaning she turned 3 on the 3rd. To top it all off Ladybug got her very first haircut today. She loved every second of it and everyone at the salon treated her like the true princess she is.

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I am so amazed at how far she has come and what she has achieved in these 3 years.  Her two most recent milestones include making wah-wah, guh, and the odd ma sounds, and drinking teeny tiny bits of water from a sippy cup.

Ladybug also attended her first “big girl” birthday party for her best friend who also turned 3. We had a wonderful time and Ladybug LOVED sitting at the craft table with all the other girls. I must admit it took all my strength to fight back the tears that day.  Just watching my princess do “normal” 3-year-old activities and be included was one of thee most incredible feelings I could ever imagine.

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Tis The Season

12 Oct

Tis the season……for all evil viral and bacterial bugs to pop into your system.
These past few days have been a blur – mostly caused by lack of sleep combined with the inevitable upcoming hospital admission at 03:00 this morning.
I apologize for any incomplete thoughts, spelling/grammar/auto correct errors as I’m right knackerd writing this.
Between reading posts on Facebook about how ill people are right now or just going to the local grocery, it’s not hard to figure out it’s that time of year. Runny noses, coughs, aches, fevers and so on.
For us mamas with medically fragile children as soon as October hits it becomes a waiting game.
Today was our day. Ladybug was very lethargic (sleepy) the past couple days and has had the most pitiful wimper that would break anyone’s heart. Fever started Thursday. At this point it’s only low-grade mild congestion, not a cause for concern. That is until 02:00 Friday morning when I could hear Ladybug coughing and choking, went into to check her and you could feel the heat radiating off her as soon as I picked her up. Nearly 104F (40C) temp plus very high respiratory rate.
My gut was screaming at me to follow it, so that I did and Mama and Ladybug were off to Mac Kids.
After an actual fabulous first four hours in the ER (we were the only ones there) the subsequent 7 really dragged while we waiting for a bed on one of the wards. After getting said bed, we finally relaxed only to be told that it was basically our holding cell until a different bed on the opposite side became free.
As of now I know the following:
*We have a nice room in Mac Kids
*Ladybug is on IV fluids, Ventolin Nebulizer , and Tylenol to “try” and keep fever under control
*She is stable
*The hospital no longer provides wipes for babies tooshies as they were slashed in the cut-backs
*The in hospital Starbucks closes at 4pm not 5pm.
I will update more tomorrow after some much needed sleep.

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My Mac Kids Friends

30 Sep

As I’m beginning to plan Ladybugs 3rd birthday party, I’ve found myself adding her hospital friends to the top of the guest list.

Not only have these kids been a HUGE part of our lives these past few years, their moms have become a very big part of my life. When you spend day after day in a little curtain enclosed space listening to pompous jr. residents, you need a buddy to vent to who knows exactly what you are feeling. These moms have helped me through so much and I don’t know where I’d be without them.

Over these past 3 years, I have learned that other parents of medically fragile/special needs children are far better resources than any other out there. Whether it be for suggestions on the best feeding pumps or emotional support – there is a real camaraderie amongst us.

Ladybug first met her BFF Bean when they were barely 2 months old. They were roommates on 3C in Mac Kids and very quickly became known as the little divas on the floor. It has been so amazing to watch these two grow up. Bean is very proud of the fact that her best friend has glasses and a clamp (feeding tube clamp) just like her.  The first picture is when the girls shared a hospital stay the 2nd time. The second picture is from the 3rd hospital stay together where us moms planned a photo shoot with the two girls to pass time. The last picture is from the girls recent morning out to Build-A-Bear. I have to say it was one of the best mornings out I’ve had in a while. Bean and Ladybug love each other so much and it was wonderful to see them interacting outside of a hospital setting. Bean’s mommy has one of the best sense of humours around, and is truly an inspiration. I love spending time with both of them. The best part for me was after our critters were created, we both brought the girls out to give meds and flush the g-tubes. I say this because it reassured me that I’m never alone in this. These moms are just like me, and I’m grateful to have been given the opportunity to have them in my life.

This is Zacky – he is like Ladybug’s big brother and just like Bean has been a roommate at Mac Kids. During Ladybugs most recent hospital stay Zacky stopped by to visit her. She wasn’t feeling well and was a little fussy, so Zacky began to sing Twinkle Twinkle Little Star to cheer her up. As soon as he started singing Ladybug perked up and began to smile. He is an incredibly special little boy who instantly wins over our hearts. Not to mention he has one heck of an amazing mama who has done a fantastic job raising this little man. The picture is an older one so I’m hoping to get some updates in December.

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The Bright Side

9 Sep

 

For the past year I’ve struggled with friends and family having children after Ladybug was born – and then watching these children growing, crawling, walking, and talking. It’s not that I’m not happy for your children – I really am and can only imagine how amazing it must be. However, every once in a while when I’m watching these kids half of my daughter’s age walking and playing, I tend to tear up and get a little sad. Mostly because the only time I see my sweet Ladybug holding my hand walking side by side,  is when I’m fast asleep and dreaming.

That being said I have found a bright side to children 1-2 years younger than Ladybug growing at a faster rate than her.  Drum Roll……………….HAND-ME-DOWNS!

For the first time ever we were offered shoes that my cousins adorable 1-year-old daughter has grown out of. Seeing as Ladybug just grew out of her size 0 and 1 shoes this was fabulous timing.

My beautiful, nearly 3-year-old princess now weighs 19 pounds and is 26″ in length. She is certainly growing at her own rate but it seems to work for her. We will definitely need to build a shoe shelf to display the additions to her already growing shoe collection.

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Now I can’t wait for my cousins little sweetheart to grow some more. I am certainly not too proud to take hand-me-downs especially when they are given with extra love.

Thank you so much M&M! It really does mean a lot to us that you would think of Ladybug. xoxo

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Our Little Fish

1 Aug

The older I get the more I find that summer just  isn’t what it used to be. No longer can I play all day outside, ride bikes with a good friend to the country store for candy, or swim for hours in our pool until I’m shrivelled like a prune.

Aside from the drought like temperature, summer now-a-days seems to blend in with the rest of the year.  However, now I have the amazing gift of watching Ladybug enjoy many of the same activities that I did as a child.

We have discovered that she LOVES anything to do with water. Especially the sprinkler. I’m pretty sure the neighbours have discovered this as well as Ladybug laughs and babbles non stop every time those drops of water land on her face. Because of Ladybug’s port and g-tube we’ve had to be very careful with water play in the past – now that the port isn’t permanently accessed and the g-tube has healed she is free to go swimming in pools. (No lakes, ponds or rivers though, far too much bacteria especially for kiddies with G-I issues) And…..thanks to our FABULOUS neighbours we now have a pool to use when ever we would like.

Now, with the added help of the SwimWays Baby Float (which I love), Ladybug can kick and float around the pool on her own. She is always kicking her little legs even on land so it’s incredible to see her face when she realizes she can kick and move around in the pool.  I’m definitely thinking we’ve got a future Olympian in the house.

Here’s a little video clip of Ladybug’s first time in the pool. The video isn’t exactly motion picture quality – it was initially over 20 minutes long and at times comparable to the Aquarium channel on television. It’s a tad choppy but I’ve managed to collect a few of my favourite moments to share.  Our Little Fish

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A Million Sprinkles

9 Jun

Yesterday began as every 1st Friday of the month does. We packed up all our gear and headed to the local children’s hospital for blood work and to get Ladybugs port flushed with Heparin.  The Heparin stops her blood from clotting in the line.

When we arrived and were brought into the room there was something different about my little princess.  Typically, Ladybug is all smiles during these visits. She loves kicking her feet to hear the crinkle sounds on the paper that covers the bed, and is usually quite calm as they prep and access her port.  Today she wouldn’t let go of my hand. As I put the mask on my face to protect her from germs her eyes began to slowly fill with tears.  As soon as the nurse cleaned the site with the alcohol swab her lower lip started to quiver and the alligator tears began to flow.

Up until this very moment our little Ladybug never really understood the things that were happening to her.  I guess we were lucky considering some of her medical issues would have brought many a grown up to tears in pain.

My sweet baby girl was looking up, pleading with her eyes for me to make it all stop and hold her.  All I could do was hold her hand and  put my head next to hers on that crinkly paper.  I was thinking in that moment – how nice it would be if she could eat ice cream.  Then I would go out after this was over and buy her the biggest scoop with all the toppings she wanted for being such a brave little girl.

After we were all done I picked Ladybug up and held her tightly in my arms.  By the time we had reached the car all was well with the world and the tears (both hers &  mine) had disappeared. It was in that moment that I came to realize love is the most important thing my little Ladybug will ever want for.  No amount of ice cream cones with a million sprinkles, video games, and toys can or will ever compare to the love and attention we give our children.

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