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!  

Hands and Knees

Jessica seems to be stronger since having this procedure.  It's only been three weeks since her treatment.  We have been trying to get her to use her hands while she's on her knees.  She really tries to crawl when she sees something she likes on the floor...only she still can't seem to co-ordinate it.  She does the next best thing by sitting up and then rolling over, until she gets things.  I've found her dirty diapers all over her bedroom floor because she made her way to her garbage can...not so nice, but GREAT to see her get it.  You can only laugh when you walk into a mess like that!!

She's sitting up so straight and definately holds herself upright much better when she sees things that excite her.




Love to see her catch herself when she falls backwards!

These are my FAVORITES!  I love seeing her on her knees and hands!

Small strides makes for huge gains!

Something New

Jess and I had a 13 and a half hour day in Toronto for her seating clinic and to be fitted for her new back brace. We've had it for a couple days now and I have a LOVE/HATE feeling towards the hard brace.

LOVE the fact that when she's in her seat with her brace on she sits so straight.  She actually looks two inches taller!  As you can see it doesn't bother her...happy, happy!! 







HATE the fact that when I take her out of the seat and put her on the floor...she doesn't move :(  



It was a sad day seeing her just laying there and not moving especially after all the gains she has made to get where she is today.  After seeing her not moving, the brace will be off during tummy/floor time so she will be able to build her muscles and continue to move around on the floor.   

The reasoning for this brace is that last month an x-ray was taken which demonstrated a s- shape at 108 degree scoliotic curve along with a rotation of the spine.  The good thing is that Jessica's back remains flexible through the thoracic area. 
Jessica's x-ray of her pelvis shows adduction and subluxation of the left hip...basically the left bone is just sitting on the edge and not seated in the hip socket. 

Do we brace or don't we brace?  Well, just over two years ago, Jessica was at a 36 degree curve...now she's at 108 degree!!  Yeah...It still shocks me every time I say it.  Is she in pain?? Who knows...she doesn't show it, but then again, we don't know half the time that her ear drum has burst until we see stuff coming out and then she's crying.  She's one tuff cookie!  


An x-ray was done with the brace on and her back measured 48 degrees!  Big difference from 108!  So we give this a try and see if it helps.  We can only try...

Update on Jessica's Progress

Well, it's been just over a week and I must say we have seen some new strengths in Jessica that were not there before.  She appears to be stronger in the torso area, in that her sitting has improved.  When she gets excited while seated she is not falling back as much.  I have also seen her stop herself from falling over with her weak hand which she has not done in front of me before!  This is all very exciting for us.  In the past two days she has not needed a bib for her drooling and seems really dry in her mouth before bed.  I'm going to try and cut back her drool medication!!! I'm so excited with all these improvements all ready and feel the next couple of months will be very promising!!!!

Great to be Home!

Sorry it took a bit before I got back on the blog.  It's been a bit of an adjustment with the time change once again and the house hold things like laundry and shopping were a must!  The flight home was good.  We had some turbulence and unfortunately they had a computer glitch which effected the monitors to watch movies...harder to entertain Jessica.  


Jessica is doing great!  Smiles as usual and her puncture site and bone marrow extraction site are gone.  It was not invasive at all and if we start seeing things in the next six months there is no question that we would go back for a second treatment!


Thanks again to everyone and I will post updates on Jessica's progress!

Heading HOME!!!

Well, only a couple of hours until we will be at the Frankfort Airport!  It's hard to contain my excitement!  We have a long day ahead of us.  A two hour drive to the airport, a 7-8 hour flight home and then a 2 hour drive home.  I'm exhausted just thinking about it!  See you when we get home!

The Last Full Day In Germany

Jessica woke up in the middle of the night crying.  We ended up giving her some Ibuprofen at which time she was sick to her stomach.  We then gave her some Gravol which we brought just in case (Brynn...don't forget to bring some for Gibson).  She was up for a couple hours and then finally went to sleep.  I wasn't sure how our next day was going to be, but Jessica came around. 


We took her bandage off this morning.  There are only two small marks left from the procedure.  They do not seem to bother her.





We met up with Dieter and Marie-Therese in the afternoon and walked to the "Old Town".

We went to an old church and saw the most amazing detail inside on the walls and ceiling.

We enjoyed an authentic German lunch at the Schumacher Pub.  I had the Weiner Schnitzel and Steve had a pork knuckle (not sure how to say it in German) and also beer that was brewed at the restaurant...even I enjoyed the beer!  

It was such a beautiful day and Jessica enjoyed the fresh air.  We walked back along the Rhein River to our hotel.  We saw sheep that were brought down by the river to "cut" the grass!  It was the funniest thing to see.

They had one person in front and one in the back with two dogs that kept them in line with a few short commands and whistles.

We are now sitting in the Hotel room and probably won't be eating dinner tonight because we are so full from lunch!  We also want to see Jessica fully rested up for the trip back HOME!!!  

Thanks to Dieter, Marie-Therese, Tobias and Nadine for such a great stay in Germany.  You have given us many memories to remember.  

It's hard not to reflect on why Jessica, Steve and I are here.  We are truly grateful to all our friends, family and our home towns for helping us get here.  Jessica has taken Steve and I to different places in our life that we would have never gone.  Through all of this I can honestly say that Jessica is enormously rewarding.  Steve and I will remain forever hopeful that medical science will progress to be able to help Jessica's quality of life.

Re-Implantation of Stem Cells

Jessica started the day off very relaxed in the lobby of the XCell-Center.  Dad was also very relaxed...mom...not so relaxed!  






Steve once again went into the O.R until they put Jessica under.   The procedure was very fast.  She went into the O.R at 0954 hrs and came out at 1004 hrs!   Steve talked to the doctor about how it went and despite Jessica's curved spine the doctor did it in one puncture.  They then took Jessica into a recovery room upstairs.  She was very groggy coming out of it.

I crawled into bed with her so she would remain laying down.   We prepared ourselves for the worse and remarkably Jessica has had no side effects...as of yet!  I finally just let her sit up because she was so determined.  We left the X-Cell Center two and a half hours later.


This is a picture of what her back looks like right now.  You can see a little mark right near the bandage and also by my finger.  That is were the bone extraction was.  The bandage is covering the puncture where the Stem Cells were put in.  We can take it off later tonight.  We are to give her some Ibprophen to help with pain.  Once again you can't tell that Jessica had anything done today.  She is rolling around on the floor playing with her toys!...this make us VERY happy.

We had a chance to talk to the doctors and they said that they wanted no less than 2 million stem cells with over 80% vitality.  They were able to get 10,800,000 stem cells from Jessica with a vitality rate of 92.4% !  This is very good news!

Now is the hard part...WE WAIT.  

Steve just got back from getting us some really good coffee at a little shop down the street.  Our plan is just to relax for the rest of the evening and cross our fingers that Jessica has no side effects. 

Dinner with New Friends

A little Siesta in the afternoon in Dad's arms was just what Jessica needed before heading out for dinner.

Tonight, we had dinner with our newest friends from Dusseldorf.  Tobias and Nadine were introduced to us from our good friend Shaun Kruger from Huntsville this past summer.  Tobias picked us up at the hotel and went across the Rhein River to their beautiful "Flat" which was built at the start of the 1900's.

It was a wonderful evening and Tobias and Nadine gave Jessica a beautiful bear to help her through tomorrow's procedure.

Resting up for the BIG day tomorrow

  We went for a nice long walk along the river again.  We are certainly getting our exercise!

Jessica laughing at the sound of the leaves crunching under her stroller






A sign that was posted in the park...something you can't do :) You don't even have to know German to figure this one out!




The parking still amazes us!  Not much room to drive through with parking on both sides.  We haven't seen one truck which isn't surprising...the gas is expensive!







Relaxing on the floor after our long walk.  She really loves her play time!  All that fresh air has made her sleepy!


Tonight we are heading out for dinner with Tobias and his wife.  Shaun Kruger was kind enough to introduce Steve to them while they were in Canada visiting.  

Bone Marrow Extraction

The Bone Marrow Extraction went very smoothly.  We were picked up by our driver (Ralf) this morning and arrived at the X-center at 9:00 am.  We filled out all the paper work and then Jessica was seen by a neuromuscular doctor and the anesthetist.  Because of Jessica's back, it won't be as easy, but the doctors say they have worked on many patients like Jessica.  Steve went into the O.R room with her until they put her under...I'm too emotional!  Steve came out of the O.R and was very surprised how fast they were able to put in the IV...not so easy when it comes to Jesse.  The procedure was very fast.  They took 7 vials from her and they said it was a good amount for her size. She came out of the anesthetic very fast and stayed in the recovery room for an hour.  





Jessica will have to keep her IV port in until Thursday so hopefully she won't pull it out!




Steve then went to pay for the procedure and ran into a bit of problems with the traveler cheques.  It would be easier to pay by credit card or wire transfer the amount...something to remember!

Jessica's New Friends in Dusseldorf

Tonight Jessica met her new friends, Dieter and Marie Therese.  Her first lesson of the trip was on finding a, hard to come by, parking space.

We went up to their "Flat" and enjoyed some excellent German coffee and various types of cakes....yummy!  Their home was built before the war and the area was spared as the bombings were further north.  They're beautiful old homes in a very historic area.

Jessica was delighted to hear some music from Dieter's Bango and Marie-Therese's Tuba.  Marie-Therese was very good at avoiding the camera.....haha






Thank you Dieter and Marie-Therese for a wonderful visit and thank you Yasmin and Heinrich for introducing us to these wonderful people!!

Enjoying Germany

This is a walking trail that we hope to use sometime this week! 
Below is a picture of the Rhein River. A famous river that travels through the city of Dusseldorf.  It is a narrow river but is passage for ships the size of freighters to small run abouts.

These pictures are just down from our hotel.  The parks are beautiful with many walking trails.  The pictures don't show how green everything looks.

During our walk we saw this beautiful little street with old buildings and gas lit lanterns for street lights.  The small narrow streets were something from the scene of a movie.





We just received a phone call from the X-Cell center saying they will be picking us up at the hotel in the morning for Jessica's procedure.  


Tonight we are meeting up with some friends of Yasmine and Heinrich (friends that donated the beautiful necklace for the fundraiser).  We are very excited to get out of our hotel room and see some of Germany from a local perspective!


Their names are Dieter and Marie-Therese Grosche.  Marie-Therese plays the Tuba in a local Music School and Dieter plays the Trombone in a famous local band that plays all over the world.  Please check out their website:  http://www.powerkraut-dixie.de/e_band.htm

We Made It!

We left Huntsville in the afternoon and arrived at the airport in great time!  

Air Canada treated us really well! We were very fortunate that Steve's friend Jonas who works for Air Canada accompanied us during the flight to Germany. He helped us out tremendously and then flew back to Canada on the next flight!  What an amazing guy!

Jessica did amazingly well on the plane.  She watched TV with some earphones for the first time...very funny to watch her.  She later fell asleep on my lap for a couple of hours and woke up with big smiles like always.  I think she was just happy that she got some cuddle time with mom and dad for her whole sleep!

Our flight left Toronto at 6:30 pm and after flying 6460 km's...we are finally here! 

We arrived in Germany at 7:00 am (their time) and we are trying to adjust.  I could hardly keep my eyes open for the drive to Dusseldorf.  Thanks to Steve we got some really nice pictures of the landscape.

This is our driver, Ralf, from the X-Cell Center...really nice guy!  Very Helpful with information about Germany and also getting us to our Hotel.  I am so happy we got the Center to pick us up.  Less stress than renting a car and reading German road signs!  They will also be picking us up for Jessica's appointments and driving us to the clinic.  


I can't believe it's two in the afternoon right now!  Poor Steve is laying down as I'm typing and Jessica just finished her feed...smiling at me of course!  I think the time change is the hardest part right now.  Hopefully tomorrow we are better adjusted.


Well, I feel I could type forever...really missing Canada right now and can't stop thinking about the amazing support from everyone to get us here.  Jessica's bone marrow extraction is on the 27th, but I will still be posting things daily while we are over here.  Thanks for all the thoughts and prayers.

Happy 5th Birthday!!!

Things were a little crazy last week wrapping up the loose ends to the Huntsville Fundraiser and I wasn't able to post these pictures until now.

We had the kids blow the candles out and make a wish...guess what my wish was for!

Someone got spoiled with gifts!

Fundraiser at the Huntsville Legion

We wanted to thank everyone for helping us raise the funds to help us go to Germany.  Everyone that attended last night and some who could  not make it, have made it possible for this to happen.  We had friends as far away as Texas who have come to support us!


It is truly amazing to see this small community come together to support our family.  We are so overwhelmed with the support whether it be donations in money, silent auction or providing the essentials for this night to happen.


There is a HUGE list of people that were involved, but special thanks goes out to:


-  John, Katherine & the Legion staff.  Not only did the legion give us the building for the night, but also members have been working to set this up and help serve food during the night on their own personal time!



Legion staff working so hard!

-  St. Mary's staff and school community.  Teachers, Jessica's E.A's and fellow students who cut the table cloths.

-  Steve and Wendy England from the Rainbow Bingo donated all the food for the night!!!


-  Donations of Silent auction items from businesses and individuals- there were so many!!

 Great silent auction items!

- Sarah Berthiaume (soon to be Smith!!) who approached us on her own offering to take on the exhausting role of organizing the silent auction.  Sarah is also responsible for getting so many of the wonderful items that were donated to us.

- Dr. Krane for donating their time and talent for the night! Gord Creaser (guitar), Richard Watling (vocals), Stephen Small (guitar), Sean Sanders (bass), David Campbell (drums). check out their website at :http://www.drkrane.com/

Thanks to Mitch & Cheryl for doing the 50/50 draw all night!

Korrie & Erica for helping on the necklace sales! Erica (in the middle) is going to be mad at me that I put this picture in...sorry! It was the only one I had that night.  She really did have a great time :)

Damon (a little boy that goes to daycare with Jessica) came that night and gave Jessica some flowers.  Talk about a touching moment for me...brought a tear to my eye!

With all the Ticket sales, 50/50 draw, silent auction and money from the necklace, the event made just over $25,000.00!!!