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!

New Diagnosis: Lennox-Gastaut Syndrome (LGS)

Last week Friday, Stephanie was diagnosed with Lennox-Gastaut Syndrome (LGS).  We saw the neurosurgeon and neurologist on March 8th. Her new LP Shunt is working exceptionally well and she seems to be more "aware" of her environment and is talking more and learning a few new words.  She will be weaned off her increased pressure meds and we'll see how she does.

Unfortunately, Steph also started having a new kind of seizure last week. The neurologist now had enough information to diagnose Stephanie with Lennox-Gastaut syndrome, among everything else. We finally know that even after our best efforts, we may never be able to rid her of these many different kinds of seizures and the best we can do is reduce the impact as much as possible with medications, the brain surgery she already had and next probably a vagus nerve stimulator implanted in her chest. In addition to the seizures, LGS can also cause cognitive/mental regression, even mobility regression.  I am planning to work with her therapists to be a little more aggressive with speech, occupational, and physio therapy.  I found video of her from just a few years ago that is of a completely different little girl than who we see today.  It really shows how much she has slowed downed and even regressed.  It's not always easy to notice these changes in the day to day of raising a child with special needs, especially when medical care has been the number one priority. 

I am a little more heart broken again.  One step forward and two steps back, this is beginning to be a theme in our lives.  My saving grace is that Stephanie still lives in the moment and enjoys all the small things life has to offer - Miss Piggy, toys, her close friends, snacks, and music. I know she doesn't need much more than this but I so wish I could give her the world! I guess I am going to have to try my darndest to do just that!

Here's a little excerpt from the LGS Foundation:

"Lennox-Gastaut syndrome (LGS) is a rare and often debilitating form of childhood-onset epilepsy. The syndrome is characterized by a triad of signs including multiple seizure types, moderate to severe cognitive impairment, and an abnormal EEG with slow spike- wave complexes. LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life.

Some of the known causes of Lennox-Gastaut Syndrome include brain injury associated with pregnancy or birth (including asphyxia, low birth weight, and prematurity), severe brain infections (including encephalitis, meningitis and rubella), developmental malformations of the brain, or a history of infantile spasms. In 30-35 percent of cases, no cause can be found.

Most children are typically developing normal when first diagnosed, but then begin to lose skills, sometimes dramatically, in association with uncontrolled seizures. Young children with LGS may exhibit behavioral issues, personality disturbances, mood instability, and slowing of psychomotor development. Behavioral disturbances can include poor social skills and attention seeking behavior, which can be caused by the effects of the medication, difficulty interpreting information, or the electric disturbances in the brain. Some children with LGS are prone to develop non-convulsive status epilepticus (a continuous seizure state that is associated with a change in the child's level of awareness). This requires medical intervention to bring it to an end." ~ LGS Foundation

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!