Archive | Uncategorized RSS feed for this section

Night Terrors

29 Jan

The house is quiet and still.  Both kids are sound asleep, I’m sound asleep, even the dog is snoring.  Then, out of nowhere I was startled awake by the most horrific bone chilling, blood curdling scream. Ladybugs arms and legs are thrashing around and the screaming keeps getting louder and louder.

There is absolutely nothing I can do to help my little girl.  Holding her makes it worse, and she’s not responding when I talk to her or sing lullabies.  All I can do is calmly reassure her that she is safe and mommy is here until the episode passes.

The first time this happened I jumped out of my bed so fast you’d think the house was on fire.  I ran into the nursery thinking my ladybug was hurt and was screaming from the pain, only to discover her eyes were closed and the screaming didn’t stop when I held her.  The first dozen times this happened I tried waking her, thinking that if I could get her to wake up everything would be better.  It wasn’t. Eventually she calmed down and drifted back to sleep.  I put her back in the crib, took a deep breath and tried to go back to sleep myself.  Less than two hours later the gut wrenching screaming and thrashing around started up again.

Aside from screaming, the worst part is feeling so helpless as a mom.  There is absolutely nothing I can do to help my daughter.  It’s like my baby girl is stuck in some twilight zone between being asleep and awake.

It never even dawned on me that it could be night terrors.  Truth be told until these past few months I really didn’t know the first thing about night terrors.  Night terrors are completely different form nightmares. Nightmares occur during REM sleep (Rapid Eye Movement) a person fully wakes up frightened and can usually remember every detail of the nightmare.  Night terrors happen in the NREM (Non-Rapid Eye Movement) stage of sleep.  Children or adults will look frightened, scream, thrash their bodies around and their heart rates typically elevate all while still asleep.  Nothing can be done to help as the person having the night terror has no idea anyone is near them.

The only thing that gives me the slightest piece of mind during these night terrors is that Ladybug won’t remember any of it once it passes.

Unfortunately there is no western treatment that can fully help with night terrors, so I am trying alternative methods to stop if not alleviate the severity of them.  No more T.V. (even Tinker bell), I’ve hung a dream catcher from her I.V. pole, there is alpha wave music playing softly in the nursery, she gets a calming essential oil massage before bed, and I’m even placing crystals around her crib.  Some of you might think it’s completely bat s*!t crazy – but believe me if your child ends up being in the 6% that has night terrors and they occur up to 3 times a night lasting 15-45 mins each, you will do everything you can to help too.

If you have some other suggestions on what might help Ladybugs night terrors I am most certainly open to each and every suggestion. You can comment on this post or email me at littleladybughugs@gmail.com.

 

Tags: , , , ,

5 and FABULOUS!

16 Dec

What a whirlwind of craziness, celebrations and anticipation these past couple of months have been.

On December 3, 2014 we celebrated Ladybugs 5th birthday. It’s truly amazing to see how far she has come in the past 5 years.

 

14744_356904950105_665770105_10068168_2745775_n

 

I am also 100% convinced that no doctor can ever predict her future.  Ladybug has been working with a fantastic Physiotherapist since last spring, and is beginning to move around independently in a gait trainer. Video to come once I can figure out how to remove the audio for privacy purposes.

The orthopedic surgeon was astonished as she thought Ladybug would never bear weight on her legs let alone use them to walk.

The biggest piece of evidence that my little bug is writing her own story is that she, against all odds celebrated her 5th birthday.  I remember doing the documentary for Mac Kids nearly 4 years ago and sharing our story including her life expectancy of no more than 3 years.  I’m unbelievably happy everyone was wrong, and now tell every new parent travelling down the same road to never lose hope.

IMG_0038

The arrival of our little man in August has meant a few months of arranging and rearranging routines, however, it is worth every sleepless night.  Which surprisingly is mostly from Ladybug and not the baby. He is already showing how much he loves his big sister. He’s mastered pulling her hair and she’s mastered swatting his hand to let go of her hair.  The calmness they bring each other when they are side by side is picture perfect, and I know their love will grown every day.

Coming Soon: Ladybugs new wheels!

Tags: ,

The Accessible Rockton World’s Fair

6 Oct

There is no question that my absolute favourite time of year is autumn.  The crisp air, the breathtaking colours of the trees, chai lattes, and last but not least The Rockton World’s Fair.

You see, The Rockton Fair has been a integral part of my life since I was an infant. My family, like so many in rural Flamborough relate Thanksgiving Weekend to Rockton Fair Weekend. For most of the farm kids it’s a chance to show off everything you’ve learned in 4-H. As a farmer’s daughter myself I was involved in the Flamborough 4-H Dairy Calf Club and looked forward to the fair almost more than Christmas.

When I became a mom the excitement for Rockton Fair time was just as strong.  I couldn’t wait for Ladybug to experience the lights, sounds and smells.  The first year she spent in the hospital but has been every year since.  This was Ladybug last year at the Heavy Horse Show – 6 horse hitch classic.  Which is incredible to watch and runs on Monday October 13th at 1:45 p.m.

Fair

The accessibility of our amazing fair never really occurred to me until I had a daughter who needed a wheelchair. If I was walking around the fair myself, it was an acrobatics act just to open a heavy door and hold it open long enough to get through.  Not to mention trying to get a wheelchair over rails on the ground to watch the 4-H shows. I couldn’t even imagine someone trying to maneuver their way in a power wheelchair.  Between this and the lack of wheelchair accessible parking spots on the fairgrounds I knew something had to be done.  There was no point in getting frustrated over everything – I needed to take matters into my own hands.  That is exactly what I did.

I spoke to a key board member with the Rockton Agricultural Society (RAS) who knows first hand how challenging accessibility can be, and together we spearheaded the Accessibility Committee.

It will be a piece by piece transition to becoming as fully accessible as a rural fair can be, but I’m so extremely proud that I had a role in starting all of it.  This year bathrooms have been rebuilt to be fully wheelchair accessible in the office building, many more wheelchair parking spots have been added (my personal quest), and power doors in the main office entrance.  This is just the beginning my friends.  The RAS is in the process of having a brand new sound system put in for the hearing impaired, more power doors will be installed, and I’m hoping to come up with a solution by next year to make the show barn more accessible to those with wheelchairs, walkers and even strollers.

The Rockton World’s Fair has been and will always be my Thanksgiving Weekend. I would absolutely love for all of you to head out to Rockton and see why it’s so special to me and so many other people.

horse

I also welcome input good and bad on how accessible you find the fair.  Even if you don’t have a disability, if there is something you think I can help with please let me know.  You can reach me here.

Hope to see everyone there.

Tags: , , ,

First

18 Sep

These past three months have been a whirlwind of happiness, excitement, and many firsts.

On August 1st, 2014 we welcomed a big beautiful healthy baby boy into the world. He is a dream come true and I feel beyond blessed to now have two amazing kids. Ladybug in typical diva style loves her little brother as long as it doesn’t impact her mommy or daddy snuggle time, if it does she will certainly let us know. Plus with the rate in which her baby bro is growing, it wont be long until he is giving her snuggles so I’m sure the above won’t last.

This is a picture of the two meeting for the very first time.  It was beyond sweet and Ladybugs baby bro (nickname to be determined although “tank” has been used a few times given he is nearly half her size at 7 weeks) even cried when we moved him away from her.

siblings

Ladybugs 1st day of “big girl” school was on September 3. I’m very proud to say there were no tears from Ladybug or myself that day.  The next day, however, was a different story. Watching my little princess riding away on the bus knowing that I was not going to be seeing her at school later on was bitter-sweet. I’m so beyond thrilled that Ladybug was accepted into this incredible school, and it is a fantastic opportunity for her, but…. it’s just another sign that my baby girl isn’t a baby anymore.  The school is phenomenal – have I mentioned that yet?  Her days are filled with music, art, yoga, swimming and on and on. It couldn’t be a better match for her. We’ve already received word that the music therapist is very impressed with how attentive Ladybug is during class.  I knew it wouldn’t take long for her to capture the hearts of all her teachers – I couldn’t be happier.

Here is a picture of Ladybug all excited to go on her very 1st school bus ride. She absolutely loves taking the bus.  The bus driver tells me everyday how she looks forward to seeing Ladybugs smile and hearing her laugh as they drive down the bumpy roads.

school

 

What would a 1st week at school be without the 1st school caught virus. Although it is always very difficult to watch my Ladybug battle any kind of virus this one has been particularly difficult to fight off. It started as a common cold, then became respiratory and for some strange reason has also caused many GI problems. That being said Ladybug is a strong little girl and is slowly on the road to recovery.  Looking on the bright side of everything – when Ladybug started preschool last year she only made it through the first 2 mornings before catching something. This time she made it through 3 mornings and 3 full days before getting sick.  This may seem trivial to some but to me it is a sign that her little immune system is indeed getting a tiny bit stronger.

 

 

Tags: , , , ,

It’s time to celebrate!

23 Jun

After a very busy 6+ months filled with meetings, paperwork, and admissions interviews,  I’m so very happy to let everyone know that my beautiful little Ladybug has been accepted into the perfect big girl school starting in the September 2014 term.

It will be a huge adjustment for me to see my baby girl getting on that school bus and blowing her kisses good-bye every morning. The tears are already starting to swell up just thinking about it.  However, I know that she will thrive beyond our wildest imaginations as she has in just one year of preschool, and will love every single second of this new adventure.

 

WelcomeKids

Tags: ,

A long overdue update

29 May

To say this past month has been unbelievably hectic would truly be an understatement. Aside from preparing for the upcoming arrival of a new baby, I’ve been busy in meetings and setting up doctors appointments to complete an admissions package for Ladybugs school. The admissions process began early this past winter and is now finally out of my hands and into the hands of the admissions board. I’m confident that Ladybug will be accepted into this fabulous school, however we should know for certain in the next week or so.

Health wise Ladybug has been holding her own. Her cold quota has dropped significantly since the preschool year began. She still catches bugs quite easily but is also able to fight them off faster and I’ve found the last couple didn’t result in bronchitis or pneumonia which is a fantastic sign.  The Myoclonic seizures are pretty much under control, however we’ve found when she is very tired or sick they increase in frequency. Once she recovers they subside again. So I certainly can’t complain at all about them. We met with her fabulous orthopedic surgeon a few weeks ago who informed us that from the looks of the latest x-ray Ladybug will not at this time require hip surgery.  YAY!!! Over the past few months Ladybug has gone through a huge growth spurt. Well huge in comparison to what we are used to seeing. At 4 1/2 years old she is now 25 lbs. Which is pretty gosh darn good.  Not only did she need some new summer outfits to fit her growing body she also required new AFO’s. (Ankle Foot Orthosis) While the new AFO’s were noticeably larger than her first pair they were still the second smallest set that had ever been made at that facility. The first smallest were Ladybugs original AFO’s. I’ll be sure to post some pictures soon.

I almost forgot to mention that to celebrate the end of an amazing year at Preschool and the *fingers crossed* start at a big girl school in September, it was time to retire those adorable hot pink glasses that Ladybug rocked so adorably. Not only had she outgrown them but they saw their final battle with a parking lot and a car a couple of months ago. Once I wiped the tears away (yes I bawled like a baby at the fact they were at the time lost and had most likely been run over – I blame it on all the baby hormones.)  I knew that it was time to begin the search for the perfect new pair.  This was also made easier by the fact that Daddy-O went to comb the parking lot after work and found the pieces of the glasses. At least they hadn’t vanished for good. Now Pembe Bear rocks them!

I can’t get over how grown up my sweet little Ladybug looks now.

New Specs

 

Tags: , ,

Fighting an uphill battle.

21 Apr

I started writing this post shortly after Christmas this past year. It is a very difficult thing to talk about especially because it is so close to home. I originally wanted to title it 11 days, because in 11 days one family’s life changed forever. I’ve decided to broaden things a bit as I’m hoping this post will educate others about how dangerous a simple virus whether it be a cold, flu or GI bug can be to a medically fragile child.

This past December a brave little man from our CDG family was admitted to the hospital. For our kids this is a common occurrence, especially around the cold and flu season. This little superhero was otherwise stable in the weeks previous to this admission. He was probably in contact with someone who had a bad cold or some other type of virus that his body couldn’t fight off. Whatever disease a medically fragile child might be fighting chances are their immune systems are extremely low to non-existent. This is the case with my little Ladybug and other children with Congenital Disorders of Glycosylation.

After a few days in the hospital pneumonia set in. The entire CDG family was pulling for a speedy recovery for this little guy even though we knew it would be a struggle. He had overcome so much previously, everyone knew he was a fighter.

Around 9 or so days after admission his mother was told that he now had ARDS. Acute Respiratory Distress Syndrome is the sudden failure of the respiratory (breathing) system.  It causes a build up of fluid in the lungs and when there is fluid in the lungs it means less oxygen is able to reach the blood stream. This in turn will deprive your organs the oxygen they need to function.  Despite everything no one lost hope – our kids are fighters.

Day 11, December 24, 2013. Christmas Eve. This amazing, strong, adorable, little 5-year-old CDG superhero gained his angel wings.

This was devastating on so many levels for me. First, our CDG family is very close and although many of us have never met in person we still love each and every single child with CDG as if they were our own. Second, because this happened in as little as 11 days to a child with the same disorder my 4-year-old daughter has.

I’ve said it before and I’ll mention it again. I don’t want to keep my little Ladybug in a bubble. I know that when she goes to school, the grocery store, birthday parties etc. that she is always at risk for catching something. This is a risk I’m willing to take to give her the best “normal” life she can possibly have. I do however feel very, very strongly about others knowingly exposing my child or any other medically fragile child to any kind of sickness.

If you have had a cough and sound like a barking seal, runny nose with green slime, fever, diarrhea or vomiting within the past 24-48 hrs please, I beg you, stay home!  That plate at Easter dinner can be set aside and dropped off, your child will eventually get over not going to the birthday party because they have a really bad cough. It’s this kind of selfishness of people that absolutely boils my blood.

My hope was and is, that this post will help in some way open people’s eyes as to how dangerous viruses can be not only my sweet little Ladybug but to every child with a low immune system.

 In loving memory of Brady and all of the beautiful CDG angels. 10299503_10201623277615055_1704163598_n

Tags: , , ,

Image

A Picture is Worth a Thousand Words…or Two!

5 Feb

A Picture is Worth a Thousand Words...or Two!

We’re Back!

28 Jan

I have been quite lapse in my blog postings these past few months…time just seems to fly by.

4 Years Old

On December 3rd my sweet little Ladybug celebrated her 4th birthday. It was a quiet family celebration as there were so many illnesses going around we didn’t want to risk her getting sick.

Ladybug has completed her first term of preschool. She absolutely loves going, and her classmates all adore her. I was amazed to see how fast the kids all took to Ladybug. She is certainly not short of friends.  September to November was a little rough, as Ladybug would go to school for 2 mornings then be off sick for 2 weeks. By the time the end of December rolled around she managed to stay healthy 3 weeks in a row. Huge milestone as her immune system is slowly building.

We’re in the midst of getting a communication device ordered. It’s basically a first step to enabling my princess to communicate the way I know she can.  The “switch” is like a large button that we can record words or phrases on. If we wanted to sing Old McDonald had a Farm I could record E-I-E-I-O on the switch and when it came time for that part I would give Ladybug a verbal cue that it was her turn.

It will look similar to the one in this picture.

Big MacWe’ve been able to test one out and Ladybug responded so well, we knew it was our first step on her communication journey.  She actually responded close to 100% better on music related prompts than ones with toys or games.  I guess my musical genes have been passed on to my little Ladybug – time to get that baby grand piano I’ve always dreamed of.

There is so much more to catch everyone up on, however, I’ll do it bit by bit rather than inundate everyone in one post.

I will end this by giving a little teaser and saying that you will definitely want to keep an eye out for my future posts, as there are so many exciting updates to come!

Tags: , , ,

Look Mommy, I Did It!

1 Oct

At 3 months a typical child will begin to roll over from front to back and lift head when on tummy. Around 5 months this child will probably be able to lift his head, push up on his arms, and arch his back to lift his chest off the ground and roll both ways . Some might be able to do this ahead of schedule, others will lag a few months.

As everyone knows Ladybug is certainly not your typical child. When other kids her age were putting everything imaginable in their mouths and tasting all kinds of new foods, Ladybug was discovering how to pull out the feeding tube in her nose. While these same kids were taking their first step Ladybug was glowing in the dark from all the tests that were performed to find the cause of a GI bleed.  This has been, and will most likely continue to be a hard pill to swallow – but as the years have passed I have learned to celebrate, cherish, and capture each and every milestone. I’ve always been and always will be one who takes a lot of pictures and videos. The way I see it,  you will only regret the pictures you never took.

When Ladybug discovered her G-Tube and was swinging it back and forth in her hand my first instinct was not to remove it from her hand but to grab the camera. There are so many unknowns with CDG that I will not pass up any opportunity to capture a single moment in Ladybugs life.

This past weekend Ladybug was playing in her Little Sensory Room and kicking up a storm.  The bells were jingling non stop, then it got quiet for a few seconds. This didn’t surprise me, usually Ladybug takes mini rests in between all the craziness the Little Sensory Room creates. A minute or so later, all I heard was non-stop laughing. I looked around the corner to find Ladybug completely out of her Little Sensory Room. She had rolled out onto her tummy, hands under her chest and had managed to push her head up all by herself.

Insert fireworks, loud cheering, maybe a marching band playing We are the Champions, and one unbelievably ecstatic mama here. 

It may have taken my sweet Ladybug 3 years and 10 months to achieve this, but the look of accomplishment on her face when she lifted up her own head screamed “Look Mommy, I did it”.  That in and of itself, was worth every single day, month, and year of waiting for this huge milestone to occur.

DSC_0056

DSC_0090

DSC_0094

Tags: , ,

← Older Entries
Newer Entries →