Special Olympics Manitoba Track & Field 2013

I can't tell you how proud I am of my little girl participating in the Special Olympics Manitoba School Track & Field Meet in May 2013.  I am a little behind in posting events but you can blame it on my new business!

Stephanie had a great time and for the first time in my life as a parent (14 years already) I got to open her backpack and find a certificate and track meet ribbons!  This might be a standard occurrence for most parents on an annual basis but it was a first for me and it made me teary just knowing she was out there, participating, living life.  And to top it all off, the 3 ribbons were all 1st Place!! (*picture my big grin right about now*) 1st place in the softball throw, 1st place in the 25m and first place in the 30m!  Here are a few pics of her day...

Cheers,

One proud mama

 

New Home Business!

Okay, I am shamelessly going to promote my latest creative venture in this post, my new home/online business, AshleyGabby Designs.  What does this have anything to do with Stephanie and why am I posting this on a blog about her?

I'll tell you!  I used to sell dolls and crafts when I was 18 or 19 at a large department store in Canada known as The Bay (or Hudson's Bay Company).  Back then it was fun and I didn't really go anywhere with it.  So, since I have put my career on hold for the last year or so, I have started to indulge in my creative side even more.  I made birds on a branch for Steph, I actually did some party planning and decorations for her last two birthdays, I started sewing and have my own craft room, I made a doll, etc. etc.

My husband encouraged me to think about selling some of the projects I was coming up with.  Hmm, good idea!  We talked about wanting to dedicate the business to Stephanie and other kids like her.  We talked about having a signature "item" that could be sold and a portion of the profits would go to awareness or research for one or all of the conditions Stephanie faces.  I am still working on that special item but in the meantime, I am making children's play tents - where kids can be kids, I am making some home décor for mom's and dad's, and I am making custom sterling silver jewellery. 

And here is where I get to the point! lol

The custom jewellery I make includes awareness ribbon and autism puzzle piece stamped sterling silver.  You can custom request a piece of jewellery with your child's name or a special inspirational word, and include a ribbon or puzzle piece symbol as well. 

To top it all off, I have named the business AshleyGabby Designs in honor of Stephanie.  She had two dolls, one named Ashley, one named Gabby.  When she desperately wanted one of them, she merely told us she wanted "AshleyGabby" and we NEVER brought her the right one first! This is why I chose to leave the name without a space.  That's my Steph!

I am really excited about this new opportunity to focus on Stephanie's well being by being a stay at home mom, while still getting the chance to be productive and creative for my own well being.  Please visit my Etsy shop or "Like" my facebook page and don't hesitate to provide feedback about what new items you might like to see!  Here are the links:

Etsy:  www.etsy.com/shop/AshleyGabby
Facebook:  https://www.facebook.com/AshleyGabbyDesigns

Cheers!

Darlyn

Happy 14th Birthday Stephanie!

Wow!  What a whirlwind past couple of weeks it's been!  As you saw from my last post, Stephanie recently spent a week in hospital while doctors treated her for infection (possible shunt infection).  We managed to get discharged last week Saturday, the day before her big 14th birthday party!

Needless to say she had the most wonderful day with all her favourite people in attendance.  In addition to receiving a million gifts and having loved ones around, it was an extra special day for her because she also received a dream cake from Renee Reyes of Sugaristic Expressions, courtesy of the non-profit organization Icing Smiles Canada.  AND we were on our local news station as well!  CTV news crew were interested in covering the story of Icing Smiles Canada presenting it's very first cake in Canada and Stephanie was the lucky recipient of that cake.

I could not believe the beauty and detail of the cake that was specially made for Stephanie's big day.  Renee did an absolutely amazing job and we cannot thank her enough for all the hours of labour and love that went into that cake. Happy Birthday baby girl!!!

Here is the CTV news clip:
http://winnipeg.ctvnews.ca/video?clipId=905435&binId=1.1206917&playlistPageNum=4

And a little about Icing Smiles Canada:

"Originally founded in the United States 2010 to create memories for children whose world is rocked by illness, Icing Smiles, Inc. has grown immensely, with more than 3600 volunteers in 50 states, chapters in Canada and Holland and hundreds of bakers all over the world anxiously awaiting their opportunity. In the US alone, Icing Smiles has served more than 3300 children and has more than 500 scheduled for future cakes. It started with one woman, flour, sugar, butter and love and has since created memories for thousands of families - memories of the kindness of a stranger, the sweet smells of a special treat, the smiles and laughs, a normal childhood experience so often stolen from these children. These memories are why "It is so much more than a cake."  The Canadian chapter was incorporated in December, 2012 and already has over 100 volunteers across Canada and several requests for cakes from deserving families."

 

Freedom Concepts Bicycle

Just a little news that I forgot to share! Stephanie received her new Freedom Concepts bicycle a couple of weeks ago and I forgot to write about it since she was still at home recovering from shunt surgery.  Now that she has been back to school this last week and her bike has been adjusted to her body, I can't wait to see her learn to use it!

I have to thank her school physiotherapist for getting the ball rolling and getting Stephanie this bike.  I received news about a month ago that President's Choice Children's Charity was going to fund this new bike for her.  It's still hard to believe that a kid's "bike" costs upwards of almost $4,000!  Well, a bike for a child with special needs that is.  So PC Children's Charity funded the bike and it was actually supplied by the Children's Rehabilitation Foundation here in Manitoba.  They are a wonderful organization and Stephanie previously had a similar bike loaned by them a number of years ago, before she suffered from vision loss and daily seizures.  I am so happy and proud that Stephanie can once again have a little more freedom,something that was slowly being taken away from her over the last 2 1/2 years, something every child should have.

Once she outgrows the bike or no longer has use for it, we can donate it to another child in need through the Children's Rehabilitation Foundation.  What a great way to pay it forward! 

PS. Stephanie, watch the speed limit when you are doing laps in school...and where is your helmet young lady!

6 Days Post Op - LP Shunt Surgery

On Tuesday, February 19, 2013 Stephanie underwent Lumboperitoneal Shunt Surgery in order to assist in the drainage of excess cerebral spinal fluid from her brain.  There were three incisions - one on her spine where the catheter fed up through her spinal column, one on her side/hip where the actual valve is placed under the skin, and one on her abdomen where the catheter is fed in to her peritoneal cavity to drain the fluid which is reabsorbed by the body.

Surgery was roughly 2 hours long and she did very well.  She woke up from anesthesia without any complications and was trying to sit up immediately. We were transferred to a surgical ward and expected to stay in hospital for about 2-3 days.  The first night was a tough one and she was very uncomfortable.  It wasn't until 6 am the next day that she finally settled and slept solid all day with the help of morphine.  That night she threw up a bit and settled back down.  The following morning she was feeling much better and we were even released to go home to continue with recovery. 

Most days since she has been sleeping about 18 hours a day, being up for 2-3 hours a couple times per day.  The incisions were closed with dissolving stitches and seem to be healing well.  There is some bruising at each site but nothing extraordinary and swelling is minimal.  As I write this it is has been 6 days since surgery and today was the first day that she really seemed to be in pain or having some kind of symptoms.  I gave her some Tylenol 3, a good rest, and then some Coca Cola (caffeine) to help any low pressure symptoms or abdominal pain she may have been having.  The surgeon said signs of infection generally show up around 1 month after surgery, if at all.

We have a follow up appointment with the neurosurgeon and the neurologist on March 8, 2013 and will find out more about her recovery and future plans for the corpus callosotomy surgery and seizure control.

Here's hoping that this shunt is helpful for Stephanie by giving her some relief from the high pressure and maybe even some positive progress with her vision! (I have posted pictures in the page on the right.)

Sooner Than Expected

I was informed a few days ago that Stephanie's shunt surgery is now scheduled for this coming Tuesday, February 12th.  She's already had her pre-op physical this week and will meet with Anaesthesia next Monday.  The paediatrician put her on antibiotics since he confirmed she also has an ear infection that has been perforated! I am definitely getting nervous and hope she can tolerate the miserable first week of low pressure headaches and surgery recovery in general.  The last 6 days or so she is constantly saying, "Mommy, I'm tired", and will want to lay down in bed.  This is so concerning for us and we wonder if her pressure is really high or if it is just her medication making her feel this lousy.  I guess next week's implant will tell us if she gets some relief.

Stephanie is looking forward to having Auntie Karen and some family over tomorrow for turkey dinner and a great visit!  I will post again probably the day of surgery to keep everyone updated of her progress.

Have a pleasant weekend!  The weather is supposed to be quite mild for us, yay!!

- Dar

Shunt Surgery News

Well, as always, things aren't going to go quite as planned.  Stephanie and I met with the neurosurgeon yesterday and we are planning to implant a shunt within the next couple of weeks.  A special valve has to be ordered so we are hoping for around the 19th of February. 

The unexpected part came when the surgeon said Stephanie can't have a brain shunt (ventriculoperitoneal shunt) because her ventricles are too small.  That leaves us with gettting a lumboperitoneal shunt.  This goes into her spine on her lower back and the valve sits under the skin by her oblique muscles and the drain tube runs into her abdomen in the front.  I am nervous enough about having something foreign implanted into my little girl, but it makes me even more uneasy knowing that this kind of shunt can cause another serious condition called Chiari Malformation wherein the brain eventually malforms by getting "sucked in" a bit into the spinal column at the base of your brain/neck.  It is a risk, a small one, but it happens to people and I had already read alot about it on one of the forums I frequent.  These are real people dealing with this additional condition.  Yikes!  One day at a time Darlyn, one day at a time.

So the next couple of weeks will consist of a few more appointments - pre-op physical, anesthesia follow up etc.

As for some good news, Stephanie is really enjoying our new home!  We moved a couple of weeks ago and it has been great for all of  us to spend time on the same level.  We moved from a two story house into a bungalow and it was a good decision!  She is enjoying exploring the new space and my husband and I are able to include her in more daily activities since she used to spend most of her time in her room on the second floor.  He even had her sweeping the kitchen yesterday!

Until next post - keep smiling!

Unfortunate Turn of Events

As I've mentioned in my last post, we have been preparing for Stephanie to have her second brain surgery coming up next week.  After yesterday's lumbar puncture, this is not going to happen just yet.

Stephanie had a lumbar puncture (spinal tap) yesterday to determine if the fluid pressure in her brain (intracranial hypertension or aka pseudotumor cerebri) was reasonable enough for the surgeon to be comfortable with opening up her skull.  It turns out her fluid pressure was 41!  This may not mean anything to most of you reading but the number should be around 10-20.  On July 10, 2010 she was admitted to hospital and her first lumbar puncture was a pressure of 76, one of the highest they have ever seen.  This resulted in massive hemorrhaging of her optic discs, leaving her with damaged vision and excrutiating head pain. Throughout the last couple of years her pressure has mostly been in the 20 or 30 range...still too high but we continued to try to manage it with Diamox and Prednisone.

With yesterday's results, the decision has been made to surgically implant a Ventriculoperitoneal Shunt in order to drain the excess fluid.  If left untreated, it would damage brain tissue and vision and leave her in tremendous pain on a daily basis.  The symptoms are the same as if you had a brain tumor, but there is no tumor to treat or remove.

Anyway, we knew that one day she may have to have a shunt but we were expecting to deal with the seizures right now and complete her second brain surgery to help alleviate the number of seizures she has each day.  A shunt is a lifetime ordeal - infections, revision surgeries, complications etc.

Now we are faced with placing the shunt first, getting  her pressure to a reasonable level over time and then considering the second part of her brain surgery.  Just another thing to add to her already very complicated little kid life.

The neurologist was expecting to speak to the neurosurgeon last night to determine when Stephanie can be scheduled for surgery.  I am anxiously awaiting an email or phone call now to find out what happens next and when.

I will keep everyone posted of the events as they unfold.

Ugh!

Disney World Countdown!

Time is going by quickly now and we are just over 3 weeks away from our Make-A-Wish trip to meet the Disney Princesses at Disney World.  I am sure that Cinderella, Belle and Sleeping Beauty's Aurora are just as anxious as we are to meet!  I finally submitted Stephanie's passport application and we should get her new passport by the end of this month. 

To celebrate our upcoming trip, Stephanie had a great visit with Make-A-Wish staff last night and received many wonderful gifts! She was smiling ear to ear when she pulled out a new stuffed Miss Piggy doll!  And that wasn't all...there were so many wonderful things that I took pictures and posted them along with comments on the page to the right under Make-A-Wish.

We are very excited for this wonderful opportunity and Stephanie's language has increased significantly now that she is talking about all things Disney!!

As Mickey Mouse would say, "Toodles!"...

Surgery on Monday

We just can't believe it.  Stephanie's lumbar puncture on Wednesday had an opening pressure of 17.2!  Not only was that just about the lowest we had seen since she first got sick 2 years ago, it also meant that she was now eligible for the Corpus Callosotomy brain surgery.  My husband and I both cried in the procedure room out of pure relief and a sense of hope.

It quickly set in though that we were now faced with dealing with the reality of what happens next.  I am sure we both thought, "Be careful what you wish for, it just may come true".  It's a very strange feeling to somehow be elated at the prospect of Stephanie being able to have this brain surgery when only 5 months ago the thought of her undergoing such a procedure was almost excruciating.

Well, she's scheduled for surgery Monday, July 23, 2012.  Not much time for a parent to process all the questions, concerns, and emotions that are keeping me awake at this very moment.  I will be able to post updates to this blog via my iPhone and let everyone know how she does during surgery and the recovery process.  Stephanie will be going into PICU (Pediatric Intensive Care Unit) immediately after surgery and may stay there for a day or two before being moved to a regular ward for the rest of the week.

Big, big hugs to our friends and family for their love, support and prayers as we take this very huge step to hopefully provide some palliative care for our baby girl!

Make-A-Wish Visit!

We had a great visit from the Make-A-Wish volunteers Christa and Cody this evening. The process of granting a wish can sometimes take up to a year, so it was especially nice to get a quick visit from our new found friends who came bearing a gift!  Stephanie is now the proud owner of a new Jewel t-shirt!  Thanks Christa and Cody for taking the time out of your busy lives to put a little smile on Stephanie's face.  We anxiously await news of being able to meet Jewel in person...to be continued!

Surgery Plan

So we have a plan (or plans) in place.  Either way Stephanie will be having surgery at the end of July. 

Once again we are going to try to get Stephanie's intracranial pressure down by significantly increasing her Diamox medication and putting her on a second round of steroids until July 18th.  On that day, the neurologist will do another lumbar puncture to check her opening pressure.  If the pressure is reasonable (the surgeon wants it to be under 20 cm H2O), Stephanie will undergo the Corpus Callosotomy that we are hoping for.  If her pressure is still too high, she will be receiving a VP Shunt, which should hopefully decrease her pressure over time so that she may be eligible for the corpus callosotomy in the future.

Only time will tell how this plays out but for now at least we can expect some type of surgery by the end of July.  One step closer to getting some much needed relief for Stephanie, both from her seizures and her increased pressure.

Wish her luck!!!

Waiting...

So this week we are waiting to hear more about what treatment will give Stephanie a better quality of life.  In my last post I mentioned that she couldn't have the corpus callosotomy due to her increased intracranial pressure.  We saw the neurosurgeon last week and discussed alternate options.  We could try the Vagus Nerve Stimulator and give her a VP shunt sometime afterwards to deal with her pressure.  I still don't have much hope that the VNS will make much difference for her.  The other option is to go ahead with the shunt first, hoping that it would decrease her pressure enough to allow the surgeon to perform the corpus callosotomy.  Either option is still months worth of fine tuning the setttings (VNS and shunt both need to be set to an adequate level to work for Stephanie).  I emailed the neurologist last week and he advised he would be speaking with the surgeon this week to come up with a plan.  Surgery could be for the end of June/beginning of July.

On another note, Stephanie's collar bone is healing well and she no longer needs to wear the figure of 8 brace!  What a trooper!  I still cannot believe that this kid broke her bone and continued with daily life as if nothing had happened...we can learn from this!

Oh, and one of the Make-A-Wish volunteers called last week to let us know that Jewel has granted other wishes and that they were still in the process of contacting and making arrangments.  In the meantime, they will be purchasing Jewel merchandise to send over to Stephanie to enjoy.  How great is that?!  I guess I had better get moving with obtaining a passport for Steph...yikes!

Surgery Postponed

Today is a difficult day.  Stephanie was being considered for Corpus Callosotomy surgery, which was going to be performed either May 8th or 15th.  I say "considered" because the neurosurgeon was reluctant to do the surgery due to Stephanie's increased intracranial pressure.  She has been on prednisone for the month of April in hopes of lowering her pressure to a level (under 20cm H2O) that made the surgeon more comfortable with the risks of the surgery.  On Wednesday, her lumbar puncture revealed that not only was her pressure too high, it was even higher than in February!  At that time it was 28cm H2O and now it's 33cm H2O. After continually injuring herself from drop seizures, including breaking her collarbone a few weeks ago, I really had very high hopes for this surgery and the quality of life it might have brought to Stephanie.  The consideration now is for the Vagus Nerve Stimulation implant to reduce her seizures and/or a VP shunt to control the Intracranial Hypertension.  We nervously await any news from the neurologist and neurosurgeon for a decision and surgery dates.

On another note, for those of you that aren't friends or family and want to get to know Stephanie's story from the beginning, please browse the links/pages on the right hand side of this blog to learn more about her, her medical conditions and hospital visits, and of course all the great and happy things in Stephanie's life!!!  Since this is still a work in progress, please forgive any missing information as I continue to edit descriptions and upload pictures.  And as my husband so kindly reminded me, I will include the happy moments in Stephanie's life!  She is a gift in our lives and I think all those who love her agree that she is much, much more to us than just the medical challenges I have outlined on this site!

The internet has been an invaluable tool for me during the last couple of years and researching has been a great coping mechanism.  I feel that the more I know about a medical condition etc. the more in control I feel over what is happening to Stephanie and the better I can help her get through it. I hope that makes sense.  The greatest help for me has been reading and following other parents and families that have chosen to share their stories and experiences.  For this I am forever grateful and I hope that my choice to share can also be of help, in any small way, to that one person searching for some answers and comfort.

Welcome!

The intial startup of this blog is taking longer than I expected and I now realize that because I tend to try to make everything perfect, it might take forever before I get this thing up and running!  So with that said, I will get back at it for now and let you all see the progress as I get things uploaded and provide as much detail about Stephanie`s journey as I can.  My next post will most definitely be about Stephanie, her conditions and what brought us here today.

Cheers!