Kenzie was a real trooper on Monday - Made it out to the zoo for most of the day with very little complaint. She will have 1 month in this cast and then we'll see how successful the surgery was. She will be in orthotic braces for the rest of her life but she's been in them most of her life anyway! Also can't wait to have a real pair of shoes on her again.

Sportin' some Bling!

Kenzie is doing great and will be going home today! She's weened off the narcotics and is alternating Tylenol and Motrin and seems to be doing great. Last night as expected was a very sleepless night. I got about 1/2 an hour between 4 and 5 a.m. and some dozing at her bedside. I think she really hates the side effects of the narcotics so much it undermines what they are supposed to do to help. Thrilled to be headed home in time for the fireworks so she can show off her cast! Thanx to all for the kind words, and prayers. Love d

Kenzie came out of surgery like a rockstar! Dr. B is very pleased with the results and I'm very pleased with the super cool cast! Now it's a matter of pain control since those muscle tendons are tough little buggers and can be very painful with spasms, so far she's comfortable and happily dozy on fentanol. I imagine about 2 a.m. all will change!

The Nitty Gritty!

Well, we're on our way! Kenzie went back at 8:00 a.m and is scheduled to be under for 3 hours. For the last 6 months I have been studying to become a massage therapist. I have a much broader base of knowledge now than at any other time in the past about muscle anatomy and their origin and insertion points in the body. I'm not sure if that's better or worse. Sometimes when it comes to your child and surgery, ignorance is bliss. However, this surgery is going to be really cool!!! You see, one of the muscles that runs down the back of the calf (tibialis posterior) inserts itself in 8 different points on the bottom of the foot. The surgeon will take some of those muscle insertions off the bottom of the foot and put it on top of the foot to literally pull her foot out of the permanent point it's in now. How cool it that?! There will also be an insertion point of the tibialis anterior, the bulky muscle that runs down the front of the calf (the one that hurts with shin splint), that will be brought from under the foot to the top and lengthening of the Achilles tendon. Some real skill and finesse will be put into this surgery! Good thoughts go out to Dr. B!

Pre-Surgery Update:

I posted some of the things Mackenzie has been up to in the last year. We are grateful for her strong recovery and unsinkable spirit (she was Molly Brown for a school report this year too)! We spent this spring break traveling to Santa Fe to visit Grandma and Grandpa and then down to Phoenix to enjoy some sun and fun and visited with mom's friend from high school.

Mackenzie made such a phenomenal recovery but was left with some anomalies we have to deal with now. On Thursday, she will be in surgery this time to help correct her left ankle which at some point during her April 2009 hospital stay developed a contracture that could not be worked out through Physical Therapy. She has a very beautiful toe point. Great, if you're a ballerina, not so great if you plan on keeping shoes on your feet! Thank goodness high-tops are still in style since they lace above the ankle, they stay on!

I will post updates here during her stay at Pres./St. Lukes as it seems the most convenient way to disperse information to everyone at once.

I am so blessed to receive that beautiful smile from her everyday when she has every right to be the most miserable child on earth! Enjoy the photos below.

Until 4:30 pm last evening Kenzie had completely stumped the doctors. She had a CT scan of her sinuses at 2pm and sure enough, her sinuses were completely clogged with goop. Ordinarily a sinus infection wouldn't put one in the hospital with a temp of 104 and not even a drippy nose but it's Mackenzie! Luckily they had treated her with an effective anitbiotic the first evening we were there so she started showing progress. But, then hit her with an antifungal drug that wiped out all the good work the antibiotic had done causing her fever to rise again... so essentially had to start all over the second night with the antibiotic. Lessons learned: When entering the ER, state that she's"immuno-suppressed" we get a room right away! (having no spleen qualifies), Request a sinus CT first, they take 24 hours to schedule and the 3rd time will be the charm! Don't pass go (don't bother with the pediatrician's office, they won't find anything). And don't treat with an antifungal until there's good reason even if it takes 24hours to culture!
We are so happy to have her home with no fever before Christmas! Frankly, I thought Ainsley was about to burst with disappointment this being the 2nd Christmas break with Kenzie in the hospital, years of therapy will be in her future!

Merry Christmas to all and to all a good night!

Tis the season of Wonder and Mystery and Mackenzie loves to take full advantage of it!

School called at noon today, she had a fever of 99.6 so I picked her up. At 2 o'clock she was at 103.7 so I took her straight to childrens. When we arrived she had gone to 104. She's been tested for flu,strep,ear infections,urinary infection and had a belly x-ray all came back normal. Her white count is slightly elevated but not alarming. We're staying the night for sure. I'll know more in the morning I hope. They hit her with a dose of pretty strong antibiotic already and were about to send her home when she threw-up a little. Probably from the antibiotic (it was just 30 minutes after). So we're checking into the Chez Petit Medic for at least the night.

I'll update when there is anymore to report.

Kenzie has been doing really really well for the last month or so. It feels like she has progressed over a "pain hump" so that she is able to be more expressive, participate more comfortably in family activities and return to her beloved horseback riding. We are looking forward to a wonderful holiday season!!!

Back to School 2009!

Kenzie was feeling great this morning, no fever and all smiles so off to school she went (at least for a little while until we see her doctor for a follow-up appointment). For the first time she and her sister A are in the same school together. A very exciting morning for all!

Little B may be a little too familiar with medical procedures. A doctor in the making perhaps?

Kenzie had a good night last night, fever is still hovering between 99 and 100.5 but her white blood cell count is trending down towards normal. It started at 37,000 on Friday and is at 24,000 this morning. Her biggest concern is getting out of her room but since she is on droplet precautions they dont want her to leave. We never know what she will do next we are hopeful she will remain the same or better today and be allowed to go home this evening. Check back later, I seem to recalling saying this before! Around May 7th.

We checked into Children's tonight at 7 pm. Kenzie has been running a fever for a week and is leaving us with....get this....more questions than answers! No ear infection, no strep,no UTI, no digestive issues. Nothing, nada to give a clue what's going on other than very elevated white blood cell counts and a fever. CT scan didn't show an abscess as they expected but rather her Gall bladder may have rolled over on itself leaving a "second mass" on the films. Seems to not be a concern.hmmmm something tells me this may come back. Mental note: gall bladder. Chest x-ray seems clear for now.
Her fever is down tonight and she is sleeping soundly. In fact, I think she sleeps better in the hospital than she ever does at home. Now, that doesn't seem fair. We were finally admitted up to a room at 4:30 am. We will likely be here 48
hours for observation.
Going to sleep now.

Go Rockies!

Mackenzie had the opportunity yesterday to be a "Celebrity Bat Kid" for the Colorado Rockies! Yesterday afternoon we arrived at Coors Field where she got her own Bat Kid locker filled with a shirt, hat, Bat and Sharpie pen, and other goodies. From there they (with dad and 2 other bat kids) went down to the field where they were able to get their bat signed by some of the players followed by a tour of the inside of the ball field including the "baseball humidor"! After the tour, they returned to the field to be introduced during the pre-game show and appeared on the jumbotron! It was a great day! Kenzie was feeling great and Dad had fun too. The day was topped off by a win by the Colorado Rockies!!!

Bat Kid Lockers

Hug from A before Kenzie goes off on her adventure

A and mom did some exploring of our own.

Bat Signing

Kenzie's 5 Seconds of Fame!!!

Little Leggers

I've been told its time for an update! Well, 6 weeks have passed and Kenzie's major antibiotics and antifungals have run out. She transitioned to just a daily dose of amoxicillian which she will be on for a minimum of 2 years (since she no longer has a spleen to fight off little infections, those can turn into big infections fast!). She spiked a low grade fever for a few days during this transition which frankly scared the be jesus out of me and caused infectious diseases to give a phone call to see what was up (still having weekly blood draws) however her body adjusted and the next blood showed back to normal. I'm hoping I will become a little less sensitive and not have near panic attacks every tenth of a degree on the thermometer!

Her cast on her right leg has been removed. The incisions have healed nicely (although she's a little like a porcupine, there are little stitches coming through the skin right now that are very pokey, sorry too much information maybe?). She received her new orthotics on the same day which I'm very glad for because her right ankle has very little to support it and I'm afraid I'm going to break it (so much muscle was removed during the 4-compartment facsiotomy). Her right hip will likely need a second correction for dislocation it is causing her some pain.

Right now I'm so glad to have her home, she is going to summer school for a few hours each day for 3 weeks this summer which helps her return to normalcy, however, I still feel like she's a china doll on the edge of a high shelf that could fall to pieces at any moment!

With her Challenge Room teacher

With her 3rd Grade Teacher

About 100 kids lined the sidewalk as we pulled up!

MA-KEN-ZEE!  MA-KEN-ZEE!  MA-KEN-ZEE!

Yesterday Mackenzie was able to attend a few hours of her last day of school.  When we pulled-up to drop her off the entire 3rd grade was lined up with banners along the front sidewalk of the school chanting Ma-Ken-Zee! over and over.  It absolutely brought me to tears having been fully to hell and back and overcome with the power of miracles, the kindness of others and the quiet but constant loving support of family and friends!  I can't possibly think of a way to thank everyone that would equal what they have given us.

  

"WOW!  This doesn't look anything like the kid I was reading about in the chart!" one doctor proclaimed today as he entered the exam room.  Mackenzie flashed him a great big smile and waved.  Expecting the worst when he walked in, Dr. "Rehab" was truly stunned by Mackenzie.  

We had appointments with General Surgery, Neurology and Rehabilitation today.  General surgery is very pleased with how her abdomen is healing and doesn't ever want to see us again!!! We happily concur and sincerely wish Dr. Dean Potter (a Pediatric General Surgeon Fellow on Kenzie's case) very good luck as he moves on to Mayo Clinic in MN-hopefully my friends in Minnesota will NEVER need to meet him but if you do, you are in good sincerly caring hands!!  

Neurology is still stumped by her left leg spacticity.  They suggest some damage or infection in her spinal cord (not brain since it doesn't present in her left arm too) but this may very likely be a mystery that won't ever be solved, as the best diagnostic tool they have would be an MRI of her spinal cord.  With all the hardware in her back from her spinal fusion, an MRI will show beautiful streaks of light across film.  

Rehabilitation agrees with the suggestion from neurology about a spinal cord injury but adds the possibility that this could still be an infection that could resolve with the antibiotics... Rehab suggested surgery to release her achillies tendon which seems the least dramatic of all his suggestions otherwise a series of braces that would slowly stretch the tendon to release it and perhaps botox injections (painful and lengthy, very reminiscent of ancient foot binding yuck!)  However, when I showed him the position I was most successfully stretching her, he quickly backed off surgery and accused Mackenzie on holding out on him!  Surprised at how well she did stretch while laying down rather than in her wheelchair he believes bracing and therapy really may be the best option.  We will let the antibiotics run their course (as there still may be a slim chance the spacticity will resolve if it were an infection) and revisit in 6 weeks when her right leg cast is removed.

All things considered, recovering slowly doesn't completely suck!