Back to School.

Hard to believe how fast Jessica is recovering. She is doing so well, that we decided to put her back into school on Monday! I think a bit of routine will be good for her (maybe she will start sleeping through the night again...PLEASE!). I know Jessica misses all the kids at school / daycare. See you there....

Progress Already!

Well, we are starting to get back into routine. No more beeps and buzzards going off! Jessica has not been sleeping well through the night. It's these times I wish she could tell me what's wrong...is she in pain, did she have a nightmare, or does she just want one of us near her?? It's a big guessing game and I'm hoping that the "NO SLEEPING" thing doesn't stay long.


The good news is....she sat up by herself for the first time since her surgery! From laying down right up to a sitting position with her legs crossed. I'm one happy mommy. Jessica seems to amaze me everyday
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Home Sweet Home

    

     We made it!  Jessica travelled very well yesterday with no compliants.  She woke up this morning with some discomfort but nothing that wasn't controlled with a little Tylenol and a BIG huge from Mom.  When we pulled into the driveway yesterday, there was an amazing Welcome Home Poster that the students in Jessica's School created for her.  Thank You So Much for doing that for her!!  Now it is time for some recovery at home....

Heading Home

Well, she did it!  After perfect vitals and a good poop, Jess has been discharged and we are heading home.  We stopped in at Nanny and Grandpa Salmon's place in Richmond last night and home to Huntsville today(Tuesday).  See everyone soon!

We're On Our Way Home

Leisure day watching TV

   

     Great  news from the surgeon tonight, we are on our way home.  He is very pleased with Jessica's progress and noted it was much faster than he expected considering the extensive surgery!  We had final xrays taken with Jessica sitting and we achieved 34 degrees which is amazing compared to the 125 degrees we had before.

     Tomorrow we will head to Richmond to stay with my parents for the night and if that goes well we will be heading to Huntsville for Monday.  Everything is going great and is much smoother than expected!

Jess and Dad chillin' in front of the tube.

TGIF - Everyone Loves Fridays

     No pictures today as we are in the resource centre in the Hospital.  Yes, I said, WE.  Jessica is off all monitors and does not have any I.V.s  So, we went for a walk to the resource centre where there are lots of toys for Jess to look at away from the boring hospital bed and plain white room she has become acustom to.  Everything is going great and since the problems the other day, she has excelled faster than the Doctors and Nurses expected!!


Enjoy your Friday everyone and thanks agian for the much needed support everyone has offered!!!

Recovery Day 3 - Amazing Day!

 

     Jessica did amazing today.  Her pain seems to be under control and appears to be much lower.  We were able to resolve her extreme gas issue with an enima.  You could see in her face that much of the pain and discomfort had subsided.  Nanny Powell always said, "It's amazing what a good "TOOT" will do for you." 

The physiotherapist made a visit today and Jessica was able to get out of bed and into her chair which amazed us beyond belief.  She didn't complain for a second and really enjoyed the new position and into something familiar.

It was so amazing seeing her sit in the chair very erect without her brace.

As you can see, Mom is as happy as Jess is - GREAT DAY!!

Tough Day

    

     I'll start off by saying that Jessica is doing fine...However, it was a tough day!  Jess had an uncomfortable night and morning.      

     I debated even blogging about this but figured it would have to be explained down the road regardless and it is kind of therapeutic writing about it.  For reasons yet to be fully determined, Jessica stopped breathing at around 2:30pm.  Here is how it played out...The monitor started beeping and I checked on her figuring that, yet again, the EKG leads fell off.  Jessica wasn't moving or breathing, her lips were blue and I watched her eyes "roll" upwards turning into the back of her head.  We called for help and I gave her shoulders a shake.  I am assuming the combination of me yelling and the shake of her shoulders brought her back to us, her eyes snapped back and she took a very deep gulping breath as if she was coming up from the water.  She then started crying and trying to catch her breath.  As you can imagine, it was a termendously difficult moment for us and continues to be as I go back though it.

     It is important to say again that Jessica is now doing fine and resting comfortably.  A series of tests were done including rechecking her blood chemistry and chest xrays.  This is what they believed to have happened.  It was not just one thing.  The fact that Jessica had been in distress this morning, she had been administered pain medication on a regular basis.  Nothing even close to being in excess and even less than the previous day in ICU but it was given in a short period of time after letting the levels decrease over night.  Thus, a sort of "catch up" was underway.  A second issue which was seen on the chest xray was that she had increased gas in her abdomin which was believed to be starting to put pressure on her diaphram.  A third obvious issue was the fact that she had underwent a major surgery and her body was trying to recover.  All these issues combined together creating a big problem...The Morphine was causing her muscles to relax combined with increase pressure on her diaphram was enough to stop her breathing.

     The Nurses and Doctors are absolutely incredible and the care is second to none.  Steph and I have a very difficult time in understanding Jessica's pain levels on a daily basis so you can imagine how hard it is for the health care professionals to do the same...there is no blame to be laid.  It is simply our little girl who continues to keep us guessing.

     Well, that's it for tonight.  I am off to get some food to my lovely wife.  We will keep you posted as soon as we can.  Thanks everyone for the amazing support through emails, etc.  I won't make any calls tonight as I have now realized what a puddle of gooo I have become after seeing this today.

Here is a nice picture of Jess taken this morning hugging her Frog while the bandage on her leg was changed:

Recovery Day in ICU

     Jessica is doing great!  After rounds, the Dr.s started taking Jessica off sedation to allow her to wake up slowly in hopes she would breath on her own.  Her lungs were doing great and we could tell she really wanted the tube and that it was causing her great discomfort.  At approx 10:30am, the Dr.'s took her off the ventilator and she was breathing fine on her own!!  That ordeal put her back in a deep sleep which was great.  She immediately went onto her side which was good because she could move really well but we could tell it was painful for her.  The plan now is to control her pain and allow her to recover. 

Look how STRAIGHT her back is!!!  We had to change her bandage because when they were taking out the breathing tube, she had vomitted and it ran down her neck and back.  This gave us a good chance to see her scar.  The surgeon did a wonderful job sewing her up.  There was no blood and it looked very healthy.  


We had a chance to check out the xrays that they took early this morning.  The rods are very overwhelming but the important part is how straight her back looksand how much room her organs will have to grow and flourish!!  The before and after pictures are astonishing....

Surgery Day

   

      Our little trooper did great!  When Jessica went in for surgery at 9am, we had a chance to speak with the Surgeon.  He renenforced to us that the progression of Jessica's spine in such a short time was very rare especially due to her young age and that surgery is the best and really the only option for her.  Since we had seen him last(6 months ago) Jessica's back has curved yet another 7 degrees making it a total of 115 degrees.  The Dr. said that it would keep getting worse until it put pressure on her heart which would make it stop.

     The anaesthetist and the rest of the team got Jessica prepared and the surgeon started surgery at noon.  We didn't see him again until 6pm at which time he told us everything went great and that he was very happy with the surgery!!  He told us that Jessica's spine was flexible but not as much as he would have liked so he had to put the Halo on her head and put her in traction for the duration of the surgery.  That entailed putting screws in her skull and femur and connecting the contraption between them straightening her spine.  That made placement much easier.  The rods themselves were attached at the top of the spine right down to the bottom.  The curve in the spine at "the apex"(worse part of the curve) was pulled into the rods in the middle using cables.  The resulting curve is at around 20 degrees which is amazing as the Dr. mentioned he would probably only get in the neighbourhood of 30-35 degrees.

     Here is our little girl hooked up and wired for sound!  The surgeon wants to leave her sedated for the night and the ventilator is breathing for her at this point.  They will reduce the medication slowly tomorrow morning and once she is breathing on her own, they will take her off the ventilator.  We can expect to be in the Hospital for approx 7-10 days all depending on her pain and recovery in general.

Friday Appointment

Friday we saw the Cardialogist.  Jessica went through a couple of tests to make sure her heart was working properly before going through a long surgery.  They did an ECG and an Echocardiogram (an ultra sound of her heart). 

Taking the ECG and staying perfectly still!

Daddy helped while they took the ultra sound.  

We were waiting paitently for the results and found out that everything is normal.  "Normal" is a word we don't really hear in Jessica's appointments, so it was a nice change!  The surgery is scheduled for Monday morning at 9:00am.  Once the doctor puts Jessica under anaesthetic, they will manipulate her spine to see if it's flexible enough to put the rods in.  If her spine is not, then they will put her in Halo Traction for approximately two weeks.  We are hoping with all the therapy we have been doing, we don't go down that route!...keep your fingers crossed.

Tonight was a little hard putting Jessica to bed.  I kissed her good night and told her so many people are thinking about her!

Pre-Op

Today we spent the day at Montreal Children's Hospital.  Jessica's had some blood work done, visit from a physio therapist, x-rays of her back, appointment with the respiralogist and a tour of the recovery room where she will be staying. 


The physio therapist explained the time frame that we will be working with to get her up and sitting as soon as possible.  The respiralogist talked about the possible risks involved with the surgery and what they would do if those risks should arise...not easy to talk about.


Tomorrow we are seeing the Cardiologist.

Rise and Shine!

 Jessica is sitting in her bed with a look on her face like...You GOTTA BE KIDDING ME!...rubbing her eyes and yawning! It's 5 am!


Boy, I miss Canada! After coming to Germany you realized how great Canada is when you have a child with a disability. I can’t believe how much I take for granted the big bathrooms and wheel chair accessibility. The new collapsible chair we bought before our trip has been AMAZING!


Jessica slept for only 1 hour on the plane. She was also really sensitive when other children started crying...she started crying. 9 Hours later we have landed and now we are home...feels good!

Top Ten Moments of Germany

Presented to you by Stephanie and Nadia....

10.  New Word for Crap...KACK!...that's all I'm going to say!
 9.  Snot Rocket...GAG, GAG!
 8.  Raw Beef!!!  You actually serve that.  You gotta be kidding  me!
 7.  Ice cold Alsterwasser = beer mixed with sprite.
 6.  Marathon walk along the Rhine River...a bike would of been a better choice!
 5.  Best saying of the day...Jessica, you may have to get out of your wheel chair and push Aunty!
 4.  70 dollars worth of German mustard...cha-ching!
 3.  Hands down...best place. KAMPS for coffee and "the best sandwich"
 2.  Tour of Dusseldorf with Dieter and MT.  The castle was AMAZING!
 1.  Big world...one place...giving hope to families.  4,777,500 stem cells...yayaya! NOW WORK IT BABY!

Grateful is what comes to mind this past week. I am grateful that I had so many wonderful people help get us here.  Grateful for my family and friends that send their good wishes and good health.  Grateful that my daughter is such an amazing child with an AWESOME disposition in life , for every smile she gives, every breath she takes. Think good JUJU for Montreal next week! 

Now we pack.

I think we have everything.

Beer...check

mustard...check

clothes...check

meds and pump...check

See you tomorrow.

Good Times with Good Friends

We met up with Dieter and Mary Teres in the hotel Lobby for some coffee.  Jessica was doing pretty good so we ventured on a little tour. 

First stop - a liquor store. 

Dieter was talking about the best beer in Dusseldorf called Schumacher Alt and a spiced liquor called Killepitsch.  He told a great story (which I'm probably going to mess up) about the liquor.  The name Killepitsch came from what the soldiers said before going to fight...before they kill us lets pitch it (have a shot).  I'm just looking at the bottle and it says it's 42%...how the heck can anyone see straight after shooting that back!

We then took a drive through Dusseldorf and took many pictures of beautiful buildings!

Second stop - Kaiserswerther. 

The picture on the left is one of the oldest buildings still standing in the Kaiserwerther Markt.  It was built in 1635

The building with the blue shutters was built in 1710.  Today this building is a flower shop which you can buy pottery, plants and fresh cut flowers. 

How cool are these wheels!  This car was owned by the top chef at the most expensive resturant in the village.  I don't think Jessica's wheel chair would fit in the back of it!

Walking through this little village was AMAZING!  There was a brick wall that originally had doors on them.  When the water level was too high, they closed these doors to keep the water out. 

The grooves in the brick is where the doors would have been

Also in Kaiserswerther was the ruins of lengendary Emperor Barbarossa's medieval palace directly by the riverside.   The imperial palace, originally dating from the 10th century, was built under the rule of Emperor Heinrich III and enlarged between 1174-1184 by Emperor Barbarossa, when he transferred the toll from the Netherlands to Kaiserswerth and needed a fortress to control the Rhine. The castle was besieged and destroyed in 1702 by french forces.

The room with the round arch was most likely used as a chapel.  Later, a well was installed, which provided water for the upper floors.

  

We could walk through the castle and look at the many different rooms.  If only those walls could talk...

That's Mary Teres and Jessica sitting in the court yard while we were on the second level looking down at them.

Third Stop- We then took a fairy across the river and headed back in the direction of the hotel. 

Forth Stop - We stopped at an AMAZING Italian resturant to have supper.

  

It was a Fantastic afternoon trip.  To finish it off we had coffee and strawberries with whipped cream at Dieter and Marie Teres's home.  Thank you so much.  We had such a GREAT time!

The Forcast

It was smooth sailing through the night.  No showers of vomit and just one dose of Ibprophen during the night (around 2am).  The moring is bright and sunny in our hotel room, however, outside is the first day of clouds and some light sprinkles. 

Our morning consisted of ....ok, I'm not going to lie....NOTHING.  We had a bit of a pajama party!  I don't know what it is but, I can't sleep here.  At home I'm tucked in for the night no later than ten.  Here....one thirty, two in the morning.  The other night... picture this...my sister standing on the bed with her ear to the wall!  Why you ask?  There is a german couple screaming at each other.  I was laughing at her so hard because I don't know why she was listening...SHE DOESN'T UNDERSTAND GERMAN! 

Jessica has been motoring all over the floor getting into everything!  At eye level to table height.  She certainly takes after mom's "path of destruction"!

Playing with her favorite toy! 

She found the phone books.  It wasn't long until she was flipping through the pages!

I wonder if that's going to come off our deposit! 

This afternoon we are meeting up with some friends we met last time Steve and I were here, Dieter and Mary Teres.  It will be great to see them again.  We are not venturing very far from the hotel because Jessica isn't feeling the best still.  Very stuffed up and her snot rockets are making her gag...and Aunt Nadia when she sneezes!

Tomorrow looks like a chance of rain and scattered clouds.  Let's hope the rain holds off so we can enjoy one last walk!

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!