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!  

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.