Preparing For Another Surgery

Belated Merry Christmas!  I know it's been awhile since I last posted, and alot has happened since then.  Upon our return from Disney World, my husband and I sold our house and bought a new one!  Needless to say this was stressful and time consuming...but we are excited to make the big move to just outside our city limits.  Stephanie will be getting a much bigger room finally and no stairs!  Unfortunately, just after accepting an offer on our house, with a possession date of February 1, 2013, Stephanie's  Neurologist confirmed that we would be moving ahead with her second brain surgery, Corpus Callsotomy.  The kicker was that the date is set for January 29th!

Luckily we were able to find a great home and will move for January 19th, giving us a few days to get settled before the big surgery.  The previous surgery was a big risk and we thought it would help Stephanie get some of the relief she needed from all her seizures.  This was not the case and she continues to suffer from numerous daily seizures.  Now we are faced with completing the separation of the two hemispheres of her brain.  A recent MRI showed some tissue still connected in the anterior part of the brain and the 1/3 that was left intact in the posterior part of the brain.  The surgeon will sever the remaining fibres of callosum and the two hemispheres of her brain will be completely separated.  This in itself may cause some additional post physiotherapy issues between the two halves of her body and how she functions.  There is risk of her losing her speech ability as well, which was our main reason for only severing 2/3 of the callosum during the first surgery.  But now we feel that we have to try everything we can  in order to help her get some relief and hopefully slow down any damage the seizures are causing.  We've come this far, we have to keep going for her sake.

It is still the worst feeling in the world to have to make this decision to put my child in harms way in hopes of saving her in the future. Would all parents do this? No, I don't think so. Some would advocate further medications.  Some would advocate the Ketogenic Diet, etc. etc.  Stephanie isn't herself in this condition.  She is so heavily medicated right now in preparation for her surgery that she can barely function without wanting to lay down and sleep.  In preparation for this surgery, we again have to first determine if her intracrainial pressure is low enough for the surgeon to be comfortable opening her up.  This means heavier doses of medication and a lumbar puncture the week before surgery to determine if she is indeed eligible...same procedure we followed this last year.  The first time around in April, 2012 her pressure was too high and the surgery was cancelled.  We pushed to try the medication trials again and sure enough her pressure was low enough to have the surgery in July. 

Let's cross our fingers that Stephanie's body will cooperate and will be healthy enough for another brain surgery.  She needs this. We need this.
 

What a WISH!

Home sweet home! It's bittersweet to say that because Stephanie, my sister and I had such a wonderful time during our trip to Disney World that we would almost prefer to stay there! It's great to be back and be able to share the wonderful memories that we made.  Give Kids the World Village was an amazing carefree place to be with your family.  Breakfast, lunch, & dinner was served or delivered every day and tasted like home cooked meals made with love.  The evenings were filled with events and activities such as Halloween on Mondays, Christmas on Thursdays, and bbq pool party on Saturdays!  Stephanie received a gift delivered to our villa each and every day we were there.

As for the theme parks, we had such a blast and I couldn't have asked for Stephanie to be more cooperative and happy.  We lugged her around everywhere and she loved it all!  Let's see, we met and got pictures with Cinderella, Aurora, Rapunzel, Belle, Mickey, Minnie, Goofy, Pluto, Lion King's Rafiki, Woody and Jessie from Toy Story, Baloo, Dora, Diego, Boots, Patrick from SpongeBob, Green Goblin from Spiderman, Tinkerbell, her new sister, Curious George, Cruella DeVille, Woody Woodpecker, Chip and Dale chipmunks, sea lions, stingrays, dolphins, alligators, snakes and you name it!!!

There were a few teary moments...happy ones...for me and my sister.  The look on Stephanie's face when she met some of the characters and how wonderfully they treated her made this whole trip priceless.  I think along with meeting Cinderellla, Stephanie's most enjoyable moment was feeding and playing with the dolphins.

I don't think I will be able to come up with a thank you letter to Make-A-Wish and Give Kids The World that will adequately sum up how we feel about what they have done for Stephanie and our family.  These memories will last a lifetime.  I took hundreds of pics and some fantastic videos, some of which are posted in the Make-A-Wish page link on the right.

Now if only I can find a way to get Stephanie to understand that every time we get in the car we are NOT headed for Disney World!!!

Toodles!

Today is the day!!!

We are busy packing last minute items and are extremely excited to depart on our Make-A-Wish adventure to meet Cinderella, Belle and Sleeping Beauty in Walt Disney World, Florida!

Stephanie woke up this morning and was more than pleasantly surprised to hear that today is the day!!!

Time for Stephanie, Karen and I to put on our Make-A-Wish tshirts and get this vacation started!

I will be sure to post pictures and updates soon...

Sent from my iPhone

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!"...

More Surgery?

It's been awhile since I've last updated on Stephanie and how she has been managing since her return home from the hospital at the end of August.  She's recovered well and began the new school year with the rest of the students.  Recently we met with the neurologist and the neurosurgeon to discuss the outcome of the surgery and Stephanie's seizure activity.

After discharge from hospital, her seizures were much shorter and she was only experiencing one or two a day.  Sadly, I have to report that her drop seizures (atonic & tonic) have increased again to the numbers that she was experiencing before surgery.  Stephanie is having upwards of 8-10 seizures most days.  Some are much shorter than she used to have, some are just as long as before, but the main point is that if we weren't so diligent about hanging onto her transfer belt at all times, she would still be falling and injuring herself daily.  There have been a few occasions in the last week or two that we didn't catch her and she literally crashes to the floor without warning.

After meeting with the neurologist and surgeon, it is most likely that Stephanie will need the second surgery to severe the remaining portion of the two halves of her brain.  An MRI is scheduled for October 30th to determine how much was already seperated during the last surgery (should have been about 2/3rds).  Sometimes the surgeon actually only seperates less or maybe even more.  If he's already seperated as much as he could than we may have to move on to the Vagus Nerve Stimulator implant.  But first things first. The MRI will tell us if there is more to be seperated.  If so, the surgeon usually doesn't perform a second surgery until at least 6 months have passed to ensure that the surgery is necessary.  This puts us at about January.  In the meantime, we are increasing her seizure medicine, Keppra, to see if it will help with the seizures. So far nothing  has changed.

As for our trip to Disney World, 5 weeks and counting!  The Wish Granting Manager from Alberta will be in Winnipeg next week and will be dropping by to meet us.  We are so very grateful for all they are doing and Stephanie is soo excited to be able to go to Disney World.  We've been told she will be able to personally meet Cinderella, Belle and Sleeping Beauty as part of her special wish!

News!! Make-A-Wish Trip

After some discussion last week with the Make-A-Wish Southern Alberta Chapter, my husband and I have decided to change Stephanie's wish from meeting Jewel to meeting the Disney Princesses at Disney World. Although she still enjoys listening to Jewel, we thought Disney World might be more memorable for her and easier to comprehend. 

Well on Friday the flights were confirmed! November 12-19th my sister Karen and I will be taking Stephanie to Disney World!!!  We will be staying at a wonderful resort that was built specifically to provide families and children of such wishes an enchanted place to stay - Give Kids The World Village.  This resort in itself is 70 acres and has an incredible amount of activities to enjoy but we also will receive a 3 day pass to Disney World and it's different parks, a 2 day pass to Universal Studios and a 1 day pass to Sea World!  Stephanie will get to meet some of the princesses during our visit to Disney World.  She is beyond excited now and thinks that when we get in the car each day that we are going to Disney World.

In addition, the wish granting manager advised us that the Canadian National Board of Directors for Make-A-Wish will be personally adopting Stephanie's wish and will be making the donations to make her wish  come true.  They are very excited about this news since it is the first time the National Board has adopted a wish for their own!  A profile of Stephanie will be presented to them, as well as details of the visit and a plaque to give appreciation of their generosity. 

I think this will be an exciting journey for Stephanie and our family!!! Time to get her passport finalized...

Home Sweet Home

After a long and drawn out stay at Children's Hospital, Stephanie and I finally came home last Saturday evening.  27 days in hospital was not what we were expecting when we were admitted on July 23rd for Stephanie's corpus callosotomy surgery.  After getting sick a few days after surgery, with vomitting, fever spikes, not wanting to eat or drink and not wanting to sit up or walk, it was determined that she may have some form of infection...meaning meningitis.  Because she was already on antibiotics when she was tested, doctors did not accept the negative test results and decided to treat Stephanie with a full course of antibiotics for bacterial meningitis.  This meant another 3 weeks of two types of antibiotics.

I am happy to say that she is doing well at home this week!  She is tired and does lay down alot but she is eating and drinking well.  She's having some post antibiotic bowel issues but nothing we can't handle!  We'll be meeting with the neurologist on September 19th to assess her recovery, her seizures and what the next course of action will be.  If Stephanie continues to have seizures that involve both sides of her body, we may have to do another MRI to determine how much of the callosum was severed and if we need to have the second surgery to severe it completely.  As always, time will tell...

Welcome home Stephanie!!!!

Getting better!

Thought I would share a quick update. Stephanie is doing considerably better yesterday and today! She is eating a bit more and drinking a little...she's even been up and walking a few laps around the ward.

Thank goodness we were here when infection was suspected and not home recovering. Antibiotics seem to be kicking butt!

Not as planned...

Sorry for the delay in posting! I have been keeping some family and friends updated but wasn't in the mind set to officially "think" about what I wanted to write about.  So Stephanie's surgery itself went fairly well and she was eating and drinking on the Monday and Tuesday after.  However, by Wednesday she was spiking fevers and throwing up.  She was already started on antibiotics after the surgery thank goodness! By Friday she was having trouble sitting up from what seemed like pain in her head.  She would grimace and squint her eyes and grab her head.


The weekend proved much of the same...fevers up and down, not eating or drinking, didn't want to sit up or walk. The team decided to do some blood cultures to determine if there was an infection. We were told this Monday that the cultures were not accurate due to there already being antibiotics in the blood which hampered the bacteria from growing giving a possible false negative result for infection.  Because of this and all her symptoms the doctors did still suspect meningitis and Stephanie will now be staying in hospital until at least August 11.


She had a PICC line inserted today which is a central line to just above her heart to administer the antibiotics directly.  Apparently the drugs are very harsh on your veins.  Even if this isn't meningitis, there certainly is/was some kind of process going on within Stephanie to make her ill...and I don't think it was just because she had surgery. It has now been 10 days post operation, her wound is mostly healed and she is only today finally starting to eat a little and sit up and walk without too much complaint!


As for seizure activity, I am happy to say that she definitely has less severe seizures now! They used to last a minute or two but now last anywhere from a couple seconds to 20 seconds or so.  The big concern is when she is standing or walking will the seizures still cause her to drop.  There is some evidence that she will still fall, since some of her seizures include tonic in both arms which means the seizure activity crossed over (generalized) to the other side of her brain. She is also having some new seizures that the neurologist actually said was a good thing.  She is experiencing seizures where her head turns severely to the left and her eyes turn up and to the left as well.  This means that the seizure activity is localized in one area and is starting on the right side of the brain.  In future they may be able to do a grid placement on her brain to determine the exact location of where the seizures are originating from and possibly remove that part of the brain.  For now though, let's hope that the corpus callosotomy was successful enough to save her from the drop seizures.  If not, we may have to consider doing a complete callosotomy in the future (the surgeon only dissected 2/3 of the callosum).


I will be posting some pictures of Stephanie's experience tonight on a separate page on the sidebar.  Also, Christa from Make-A-Wish dropped in last Friday for a nice visit and brought Stephanie a Jewel cd to enjoy during her recovery! Thanks Christa! (pic posted in Make-A-Wish gallery).


Long post, sorry! Pray that Steph does well the next week so we can go home!

In PICU

Stephanie is recovering quietly in PICU from her corpus callosotomy surgery. What a great feeling to finally be at her side. Technically I am writing this from my room in the Ronald McDonald Family Area.

I will not be allowed to have my cell phone on in PICU but I will go into the waiting room once in awhile to make calls and check messages.

It's difficult to see Steph with drains, machines, and wounds but I am thrilled that she asked for water right away! Thank goodness her speech is still intact!

Here's a quick look at what we first saw when we came in the room. She will have swelling as the days go on but right now she looks great.

Sent from my iPhone

Here we go...

With about an hour's worth of sleep we are off to the hospital...if I can ever possibly wake up Steph out of bed!

I will keep in touch throughout the day.

Sent from my iPhone

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!