The Word of the Day

HOPE

Definition:  1. To entertain or indulge hope; to cherish a desire of good, or of something welcome, with expectation of obtaining it or belief that it is obtainable; to expect; -- usually followed by for. "Hope for good success." --Jer. Taylor. [1913 Webster]

It amazes me how often I heard that word today...because really, that's all we have left.  Families from Minnesota, Saudi Arabia, Italy, Romania and Canada...Mississauga (to be exact!) came to one spot looking to improve their child's quality of life.  Is that asking too much??  We all didn't think so.  Every single one of us were on the same playing field and we all had a story to tell.  Makes you really appreciate life and not dwell on the little things.

Our appointment was bumped up to 10:30 this morning instead of 1:10pm.  Jessica was good and didn't pull her I.V out, so putting her to sleep this time was really easy.  They implanted 4,777,500 stem cells with the vitality of 90.5%.  It wasn't as much as last time, so I hope we get the same positive results. 

Jessica took a bit longer to come out of recovery than two days ago (15 minutes instead of 5).  They put some oxygen on her to wake her up.  She seems a little more tired this trip than last time.  She stayed laying down for about 40 minutes and then started sitting up.  I gave her some water and then fed her lunch...yum, yum...liquid vanilla. 

The doctors gave her a certificate for being a little trooper!

Her arm is a little bruised from the IV, but other than that she's doing just fine!

She got a hat from the x-cell center.  It's stayed on for....10 seconds!

Now the waiting game

Cross your fingers that 4,777,500 stem cells work as hard as the last treatment!

Confessions of a Shopaholic

 I had a bit of technical difficulties.  Translation- STEVE...I DON'T KNOW WHAT I'M DOING!!  Now, because I'm over 6 THOUSAND miles away...option #1 isn't going to work.  Option#2-  Work it out...you can do it girl!...hahaha-yeah right.  So here's the thing...Blogspot decided to change how you upload a picture onto your blog.  They should of put a "warning" or maybe a "memo" out to NON-computer friendly people...me being NUMBER ONE on the list.  Anyway, I DID IT!  I may not be a computer geek, but I worked it out...an hour later :(  

SO, ON WITH THE BLOG 

 

Hi, my name is Stephanie Salmon...and I'm a shopaholic.  That's the first step right?...ADMISSION. 


My sister and I woke up to our "nothing day".  Not one thing on the calender to do...sooooooo shopping was slotted in.  I'm hoping this is a girl thing and that I'm normal.  There something about walking into stores and going through clothing,  I swear my heart rate slows and there is a sense of calm. 


11:00am- A walk to the corner coffee stand for our ritual coffe and "the best sandwich". We decided to sit and enjoy the plus 20 degree weather.  My sister is talking to me but I'll I'm thinking is SHOPPING, SHOPPING, SHOPPING!

11:35am- We started our walk to the old town. My sister is talking to me.  I'm half listening to her asking me how far I think this walk is, how thirsty she is and that she can probably suck the Rhine River dry!, can you please slow down my legs can't keep up to the road runner...beep, beep! and I'm looking across the river thinking SHOPPING, SHOPPING, SHOPPING!

Here is my sister wishing the town was a little closer.  I swear I heard her cursing through her teeth at me here!

12:30pm-  O.k...I now offically STINK!  I was not prepared for the above seasonal tempatures.  Thank god I brought some comfortble shoes though! Now where was I...oh yeah, SHOPPING!  We headed straight for a little store that sold some amazing mustard.  I told my sister about this mustard the first night we ate at the hotel...she's now hooked.  The nice lady at this mustard store (I'm calling it this because I can't read german) was so happy to see us.  Between the both of us we bought about....Steve...you might want to stop reading from here on!!!.... $70 dollars worth of mustard!  Hey Steve...you alright? Don't worry...Nadia bought most of it. 

1:30 pm-  Walking through the small streets seemed surreal.  I did good...talking myself from not buying anything.  I was calculating the exchange rate in my head...boy, what a headache!  I was drooling over many things there...leather coats to AWESOME shoes!  Nadia bought her kids some amazing things.  I can't say because they are probably reading this blog...but I will say, you sure are lucky!  We also stopped at this amazing little purse booth which Nadia broke down and bought one!  I swear, when I was walking past some shops looking into the window, I saw the little angel and little devil on my shoulder duking it out! 

We started to head back and stopped at this church...whew, no more shopping!  We poked our heads in the door and couldn't believe how BEAUTIFUL if was.  The pictures do no justice.

2:45pm-  Started the trek back to the hotel.  My sister and I were giggling about things...probably delirious from heat stroke!  So much, that I thought I was going to pee my pants!  Thank god we found a bathroom.  I was joking...just go in there!  Low and behold it WAS a bathroom!  You had to pay 30 cents.  Sounds easy...not so easy when you can't read german!  Thank god there was a lady there to guide us through it!

3:00 pm- Back up the ramp to get to the bridge.  My sister is ranting behind me about how she's going to high jack a cyclist , babbling how her calfs are burning, you gotta feel my thighs..I swear there're seizing, I can't believe I drank all the water, I think my feet are gunna FALL OFF!  I'm laughing so hard by now that I had to stop.  Aw, the fun we are having!

3:15pm - Back at the hotel.  Nadia is gripping the hand rail in the elevator and we laughed all the way up to our room.  I watched her walked to the door while she cursed her shoes and says to Jessica that she might have to get out of her wheel chair and push her Aunt!  Now we are now just vegg'n in the hotel room. 

So I close by saying...Since accepting my "Addiction" I've learned to listen to the angel (most times)... Don't buy it...do you REALLY need it?  You don't need  physical things to have a memory...MEMORIES can be made anywhere and pictures say a thousand words!

Ask Me How My Day Was...

Today is a GOOD day...better than the past days.

This past month has been pretty stressful.  Moving Jessica's Stem Cell date before her back surgery and mentally preparing for the trip to Montreal which will put my little Angel in so much pain!  My stress shows through my forgetfulness.  I tend to be "snappy" at my husband (I think Steve calls it something else!) , forget half the groceries I wrote on my list to buy, forget to put the eggs in the fridge that I took off the stove and placed in cold water before I ran out the door for work (probably behind schedule).  My husband calls this "My path of Destruction".  Funny eh...but it's true!  If I'm stressed my entire household is SCREWED!  I'm working on it and god love my husband for putting up with it!  I miss my family and friends (minus my sister who is graciously helping me out here!). I’m a bit of a home body and traveling to a different country with Jess and my sister feels a little strange. Of course I still have the phone (if I wanted) and the internet, but there is something much different about being physically together. Support is an amazing thing! Being away make me a little sentimental...or crazy!

Got hope? I do...lots of it. Especially after her last stem cell treatment. Thursday is going to be an exciting day for me...her re-implantation!  I see many improvements in Jessica although they are small they are still there. Sure I wish somedays that she could do one giant milestone. I'd love for Jessica to be moving faster with movements. But me being a runner, I have to remind myself that it’s not a sprint...it’s a marathon. Jessica will go at her own pace. She’s my little ray of hope and she will do her best to make it through her days of challenges. She continues to touch us all, pushes us to grow beyond who we are and keeps my life interesting!


Around every corner I'm finding help in the most unexpected ways. Such kindness from Jessica’s teachers,  E.A’s at school and daycare, therapists, non-profit organizations and foundations willing to guide and help us.  Also I can't forget the love from strangers and friends offering us support. We never forget any of you that have helped Jessica.  It was the help of every one I've mentioned above, that has brought us to Germany for this treatment.

So I can't complain.  The day started off good!...good coffee, good sandwhich (that's for my sister!)

a good amount of bone marrow that was taken out (7 vials which we are told is a "good" amount for her size),

a good two hour walk,

A good nap,

and a good dinner...with good company!

A "great day" would be doing all the above...with my husband!

MISS YA

Bone Marrow Extraction

After Jessica's nap we went for a walk and grabbed some coffee.  My sister loves the sandwiches they make there and I quote "the best sandwich I have ever ate!"  She's too funny!

Everything went really well today!  We sat in the lobby for a bit and took a couple of pictures of jess.

 I absolutely love the espresso machines!!! 

 

I went into the O.R. room when they put her I.V in.   Jessica is a little PISTOL!  She fought them while they held her down and unfortunately it took them a second poke to her arm to get it in.  The procedure took about 15 minutes.  Worried mom kept looking at the door everytime it opened. 

 They brought her up to the recovery room which we were there for about 30 minutes.  Once we gave her some water we headed back to the hotel to feed her.  She still seems a little groggy.  We haven't been able to get out the hotel yet.  I'm hoping that she wake up so we can go for a short walk.  This trip seems a little harder on her maybe because of her cold.

We now have to try and keep her I.V port on her arm.  They wrapped it with blue tape (as you can see in the picture) to try and keep her little fingers from pulling at it

Rise and Shine

We slept a total of 13 hours last night.  Jessica woke up grumpy...hard to believe.  She caught a cold and was sneezing pretty good on the plane.   A COLD!!!!  AHHHHHHHHH! 

After her morning feed she started crying so I put her back to bed.  She's sleeping as I type.  We are just going to take it easy this morning.  X-cell is going to pick us up around 11:30 for our appointment.  Let's hope Jessica wakes up a little happier...

Day One

This weekend leading up to this trip was definitely an experience. Friday I wasn’t feeling well, Saturday I woke up at 4:03 AM (that’s right...AM) because I was thinking about Jessica’s pump and how to change the plug to fit in Germany’s outlets. WHY, you ask...I have no idea. I’m so use to Steve getting that side of things ready while I just take care of Jessica.

Our drive to Toronto was uneventful...just the way I like it. We ended up stopping at COSCO and bought some snacks for the trip. Don’t worry steve, I didn’t do a shopping spree in there (tempted though!)

When we arrived at the airport, we didn’t have to stand in line. Air Canada was kind enough to fast track us. Going through security wasn’t a problem either. They just took us aside and swabbed Jessica’s bag...I’m guessing for explosives or something. We had all her medication and a couple days worth of food, just in case...you never know a VOLCANO might erupt or something!!

We had plenty of time to waste, so my sister and I were just sitting at our gate waiting for the call that our flight has arrived. Nadia has her blackberry attached to her, updating facebook on her status...I think she has a problem! Jessica is doing amazing so far. She’s happy, happy and very vocal through the airport!

Last minute decision not to use the car seat...It worked out really good!

The flight to Frankfort Airport went very well. Jessica maybe had 2 hours sleep on the plan...miss noisy parker!

7 hours 28 minutes later we arrived in Germany. Going through security in Germany was crazy. They wouldn’t let nadia pass a line to help me with Jessica. I had no idea how they expected me to carry Jess and her chair and all our bags by myself. A lady then took me over to a chair and had me remove Jessica’s brace and she patted her down. They certainly do things a little different here.

Here is Jessica on the back of the bus laughing her head off.  At this point I was a little nervous that we were going to miss the plane!  I wish I could take some of Jessica's attitude!

We had three hours before our flight to Dusseldorf so we found ourselves a table ....and WAITED.  We then were taken away from our gate and processed in a different area and went through security again for the 3rd time and then placed on a wheelchair bus to be driven to our plane.  2 minutes to spare we finally sat down in our plane seats! That's right...the last ones to board!  Dusseldorf did not seem as organized compared to Toronto's smooth sailing.

We were greeted by our X-Cell Driver would was very nice and helpful.  He drove us to our hotel which was only about 10 minutes from the airport.  We then checked in, bathed Jess, unpacked and had a cat nap for 2 hours before our appointment at X-Cell. 

We talked to the Anaesthesiologist who then switched our appointment for an earlier time (12:00).  So now Jess can't have anything after 8:00am tomorrow morning. 

Well it's been an exausting day.  Nadia and Jess are crashed out on the bed while I'm typing. 

Looks Like It's A Go!!

The Flights have re-opened over in Europe! 

Now I have to start packing...

Jessica is right up on her knees checking things out!...and TAKING things out!

Getting ready for the BIG day.

Pretty cool seeing her so determined to get those items out of the suitcase.

Steve has sat me down tonight to go over things.  It's going to be strange not having him there this time.  He was the one that alway took care of everything...time for me to step up to the plate!

My sister and I fly out Sunday and Arrive in Germany Monday morning.  We have to be at a pre-op appointment in the afternoon.  Let's just say it's going to be a crazy, busy day...on top of the JET LAG! .Jessica's Bone Marrow Extraction will be on the 27th and the Re-implantation will be on the 29th.  We then have some time so I can show my sister the beautiful park nearby and the old town just over the bridge...she's going to love it.

I'll keep this blog updated daily while we are over there again. 

9 Days to go...Maybe?

So, my mom called me tonight asking if I've been following the news.  "No, why?" I asked.  Apparently Germany has closed their airports due to the volcanic ash from Iceland!!!  You've got to be kidding me...I've been counting the days to go over!  Talk about a punch to the stomach!!

I have no idea what the next nine days are going to bring...

trip - or no trip?

Unexpected Changes

Looks like we are heading to Germany a little sooner than we thought.  We had some news about Jessica's back two days ago.  With some phone calls back and forth with the neuromuscular surgeon, we are going to go ahead with the surgery to put Loque Rods in Jessica's back to stop her progression of Kyphoscolliosis ASAP(in the month of May).   There are risks of doing surgery, as in all surgery's, but these risks are far less than not doing the surgery at all.  Without correction, Jessica's spine is interfering with the development of her lung and will eventually endanger her heart due to the pressure. 


With this decision to move forward with the surgery, it conflicted with the time to do Jessica's treatment in Germany.  Unfortunately, Steve won't be able to come to Germany with us.  My sister, Nadia,  has decided to accomany us for this long exhausting trip...shhhh, she has no idea about the jet lag!!!   Steve has been so busy changing dates, flight times, and accomodations for us so that our travels will hopefully be smooth sailing...what a guy!!   We will now be leaving April 25th and coming home May 2nd.  I will then go back to work for a couple of days and then off to Montreal for her back surgery.  We are hoping that Jessica won't have to do any traction (halo around her head for 2 weeks to bring the spine in line.)  If all goes well  (no traction), we should be home 7-10 days after the surgery.  Feeling a little overwhlemed...taking it one day at a time!

Getting into EVERYTHING!

This picture makes me laugh!  I was trying to take a picture of her trying to pull her stuff off the shelf.  Everytime I lifted the camera to take the picture, she would "smile"at the camera.

Getting into everything at eye level.  Not use to it...BUT LOVING IT!!

62 DAYS LEFT!

Sleeping Beauty

Jessica did really well yesterday.  The procedure took about 1 hour and then we stayed an hour after so they could monitor her.  She was really sleepy when they brought her in, but came around about 15 minutes later.  We drove home as soon as they discharged her...6 hours later, we're home!

MRI in Montreal

It's been awhile since I've updated Jessica's blog..sorry.  We left home right after work on Wednesday and arrived at Steve's parent's house.  Jessica was excited to see nanny and grampa and then went to bed pretty fast.  The rest of us stayed up to watch some of the Olympics...GO CANADA GO!!!


This morning we left Ottawa early because the weather wasn't the best.  We got here in plenty of time to register and grab some lunch.  Jessica enjoyed her chicken wrap and steve enjoyed his vanilla shake...hehe, no wait..other way around :)


We met with the doctors who will be putting jessica to sleep for her MRI.  Looks like it will be pretty quick and hopefully we can head home right after that.  We won't know the results for a couple of weeks, but I'll keep you posted!

Just Over a Cold

Jessica just got over a cold and we noticed that she got some reflux back and her drooling also increased a bit.  It's been a week and things are starting to clear up again....yeah!!!

Round 2

Well, we are heading back to Germany!!  We have been so impressed with Jessica's small strides and also that we have been able to reduce her medication.  Steve is booking our flights as we speak for May 2010!!!  Now the count down begins...

Maybe our best gift yet!!

Christmas 2009...and yes, little miss Jess was spoiled liked every other year.  My sister just sent me some photos and I just had to post them.  I find myself looking at every picture that has been taken of Jessica since her treatment.  I still can't believe how straight she sits, with her legs crossed, even when she gets excited. 

Well, It's been over six weeks since Jessica's Treatment at the X-Cell Center.  There has been some small improvements (but HUGE in my eyes).  Definitely better sitting, seems to interact with her toys a lot more, can hold / pick up things better than before, more vocal and seems to try and mimic me with tone, gets on hands and knees, lifts one hand while on hands and knees to try and grab things, her level of sight is not just on the floor but looks up for things on tables.

It's funny...over the holidays I found myself asking my husband when was the last time she had reflux?  We couldn't remember!!!  I say funny because this was something that we dealt with on a daily basis  to the point where after she fed, we didn't move her for about 20 minutes so that she wouldn't reflux all over her clothing.  I can't believe I didn't notice when it stopped.  This daily occurence was frustrating especially when I was rushing around (because I'm usually LATE!) and she refluxed all over herself, so I had to change her which made me ever LATER!!  We've also noticed that she has BIG burps...DRY BURPS...NO REFLUX after the burp!!  I now can put her on the floor after a feed without her spitting up...AMAZING!

Once again this is VERY exciting and I find myself wishing for more.  Something I've NEVER done before.  To see her do things she's never done before is like Christmas everyday.  I say keep the "GIFT" coming.   This is one happy momma! 

Montreal Trip

As parent, you want to do the best thing possible for your child and hope that you are making the right decision.  It's frustrating... and I don't think these decisions will ever get easier. 

It's been two weeks since our trip to Montreal and it hasn't been easy to put how our trip was into words.  What I can say is that we have found out more information about Jessica's back.  The doctor's at Shriner's Hospital were fantastic.  We were origianlly booked into the CP clinic and the doctor there thought we should see their Neuromuscular Surgeon.   He took us in immediately and took time away from his patients to explain in detail the problems with Jessica's back.  He is concerned about how much the curve progressed over the last two years and feels her back is in "big trouble".  One thing is for sure...It's not going to get better.  He wants her to get an MRI of her back so that he gets a better picture on what's going on.  Once we get this, I'm hoping I can explain things a bit better which may also make our decsion a lot easier.

Thanks again to the Huntsville Shriner's who were instrumental in helping us get to Montreal to see their amazing doctors.  I can't say thank you enough...

A Long Drive Ahead

I never thought I'd say it...I LOVE the internet!  This blog has allowed me to journal Jessica's Journey and hopefully in some small way help other families in similar situations.  It also serves as one of my THERAPIES. It's important for me to see just how far our little angel has come.  It also makes me think of how far Jess will continue to develop and achieve things in life.   


For the past 5 years we have been fighting for Jessica.  We have done conventional and unconventional therapies.  Today Jessica has come a long way...but also has a long way to go!  Next weekend we will be heading to Montreal to Shriners Hospital for Children.  There, we will be attending a CP clinic.  We are always looking ahead of our situation to make sure we are doing everything possible.    

Let's just hope it doesn't snow that day!