Merry Christmas!

We hope everyone had a great Christmas!  We had to change up a few of our Christmas traditions this year, because Kevin pulled a 16 hour shift (not by choice) from Christmas Eve into Christmas afternoon.

We cheated a bit with the cookie decorating.  Our grocery store sells these little decorating kits and the cookies. 

This pain in my butt thinks he owns the tree skirt.  I am soooo tired of fixing it. 

Gingerbread houses are for boring people.  We found this awesome Hershey's chocolate train to assemble and decorate!

We braved the freezing rain on Saturday to go by one of our favorite bakeries.  We had to pick up our pre-ordered Buche de Noel cake.  While he was in there, Kevin found an Eggnog-cream filled cupcake that he had to try.

Mammy came over for our big Christmas Eve dinner. Speaking of our Buche de Noel cake...  it was so pretty and yummy! The angle isn't great, but those are "mushrooms" by the log!

Since Kevin had to be in to work for 10 PM, we opened all of our presents from family and the girls' presents from Mommy and Daddy after dinner and Mass.  Sorry if some of the pictures aren't great.  The low-lighting and Kenzie's dystonia make picture taking challenging!

 

This was our theme of the night...  Frozen getting in the middle of everything!

After three years...  Kenzie FINALLY got into the whole rip the wrapping paper thing!!!

As you will see...  we had a very Panda Christmas!

This got an "awesome sauce" from Kaitlyn.  Thanks Uncle Mike and Aunt Diana!

Kevin called Kaitlyn over to open the box since it was a joint present for the girls.  By the time Kaitlyn made it to Kenzie's side, to our shock and delight, Kenzie had already pulled off the cover and tossed it behind her!

 Another fan favorite!  Thanks Oma and Opa!

And yes, Kaitlyn quickly leafed through the pages to be sure there were pandas in there, hahaha!

Kaitlyn was awed when I told her I had one of these as a kid.  The little hand down there is Kenzie wanting to be in on the action.  This was another hit with both girls.  Kaitlyn brought the doll to Mammy's and Kenzie was shrieking because she wanted to hold it too.  Thank you Oma and Opa for the gift of numerous fights, haha.

Oooh look more pandas!

Kaitlyn was supposed to get an American Girl doll for Christmas.  We ordered the darn thing a month ago and it was guaranteed for Christmas.  That's right... no doll yet.  Luckily, it has a money back guarantee if it doesn't arrive in time.  I had to print out a picture of the doll and make up some silly poem that it was still on it's way.  In the meantime, Kaitlyn got some doll clothes for a doll that has yet to arrive.  She is wicked excited about the doll though.  She mentioned it numerous times today!

Magic science for wizards only!

After Kevin went into work, I played Santa- filled the stockings and left a couple small presents for the girls.  And of course...  enjoyed the milk and cookies. 

Although Kevin wasn't with us this morning, I tried to make breakfast a little more special for the girls...  cheesy scrambled eggs, English muffins with Nutella, and an almond spritz cookie.

The girls were soooo patient even with the Santa presents under the tree.  They spent the morning playing with their new toys and watching the Disney parade/ Christmas celebration on tv...  while a blizzard was going on outside!

Daddy got out of work at 2.  We headed to Mammy's for an early Christmas dinner.  Then they finally got to open their stockings and presents from Santa.  Once again, Kenzie was all into the wrapping paper!

 Kaitlyn was very excited to find more Legos in her stocking!

Merry Christmas everyone!

Kenzie Part 2

Here are some pictures of Kenzie from while she was in the hospital.  One funny story came from when they were giving Kenzie Tylenol and the nurse was going to do it in suppository form.  So after administering the medicine Kenzie turned to the nurse and said hey in a loud determined voice.  It was quite funny and one of the first signs we were getting our Kenzie back. 

This was Kenzie shortly after getting to the PICU

She looked peaceful and we were told she was in normal sleep, but it was still pretty scary as she remained unconscious for over 6 hours.  Here are a few more pictures from Kenzies stay.

Kenzies Seizure

So I guess I should start from the beginning to give everyone the full story.  On Wednesday Kenzie went to preschool as normal but I started to get reports from them that Kenzie had a low grade fever and a runny nose and that I should probably come get her.  So I went with my mom and picked her up and brought her home.  Kenzie was all about the snuggles and yawning nonstop until she fell asleep sitting next to me.  Luckily at this point Kaitlyn came in the door from getting off the bus because within ten minutes of her nap starting, Kenzies eyes shot open and she started looking around but was obviously not alert and unresponsive.  I observed her for about 30 seconds doing an assessment on her when the full grand mal seizure set in.  All bets were off then so I contacted Cyndi quickly and got an ambulance coming.  I brought her straight out to the ambulance [again with a couple firefighters on board who knew me] and started our ride in.  On the ride in Kenzie was continuously seizing despite being administered medication to stop it.  Upon arrival at Maine Med we were direct admitted into the pediatric side of the ER and Kenzie was given more medications to stop the seizure.  Those didn't work either.  After consulting multiple doctors and the neurologist on call who came into the room as well, another medication was administered that luckily stopped the seizure about halfway through administration.  At that point the seizure had lasted for a little over 40 minutes.  Seizure was done, Kenzie was stabilized, but still unconscious.  We were then moved to the Pediatric Intensive Care Unit [PICU]  at Barbara Bush Children's Hospital which is within Maine Med.  Kenzie was monitored here, along with an active EEG  monitoring her brain function to make sure she wasn't seizing.  Probably around 10 to 1030 after being moved around by the nurse, Kenzie woke up.  She was very angry and confused, and the nurse explained that it was like waking up with the worst hangover ever.  The effects of the drugs would last days.  So not much sleep was had that night, I was finally able to get Kenzie to fall asleep after getting into her bed with her around 4am where we slept until about 7 or so.  Kenzie underwent numerous tests including an MRI that day.  They were able to stop the EEG  that morning as her brain waves appeared normal.  The MRI happened in early afternoon, and required Kenzie to go under general anesthesia , and so again late Thursday afternoon she woke up slowly and confused.  The good news is that after that Kenzie could eat again, starting with chocolate ice cream, followed by grilled cheese, applesauce, and finishing the evening by eating some of mom and dad's chocolate pudding.  Those were very good signs.  Thursday night was better, although I spent the entire night in her hospital bed with her.  She slept fairly well until the early morning hours when her nasal congestion started to anger her. 

It is believed that either an ear infection or just a normal viral cold started the wheels turning on this.  Because it's hard to say which one Kenzie has been put on antibiotics as a precaution.  Everything this morning looked good so Kenzie was good to go for discharge.  Dr Rodan will probably receive a DVD of the MRI sometime next week so we haven't been able to discuss the results with him yet.  The local neurologist with whom we have been speaking through all of this showed us some images from the MRI.  What it shows is somewhat shocking.  The areas that were shown as affected last year with damage are now not as much and it is flaring up more on the opposite side.  So it seems to be fluctuating , and in some areas that were damaged or believed to be dead brain cells that have possibly healed.  What all this means is not known yet.  It is very unusual , but seems good that it is fluctuating as opposed to just growing in size.  I am waiting to hear how Dr Rodan reads the disk, and will update everyone when we hear from him. 

Either way Kenzie is home.  She is still very much under the influence of the drugs and is very unstable in  movements like crawling or balance control.  She ate fairly well today and is upstairs resting now.  She will bear watching until we get past this cold, but it seems every cold puts Kenzie at a sudden heightened risk of seizures.  It is possible Kenzie will receive a medication such as a sedative so that if Kenzie gets a cold it may head off a seizure.  It is a step not taken lightly as such drugs are powerful, but versus another seizure event seems to outweigh it.  I will say all the staff at Maine Med were great, especially the nurses in the PICU.  Kenzie even received a special quilt that all the children get when they are admitted.  They are made by volunteers and donated to the hospital.  All in all it went well, and staff gave us a pretty thorough tour as unfortunately we are likely to return there at some point.  It's been an eventful past couple days and I'm not sure if I missed anything.  I'll update this or post a supplemental blog if I think of something.  Thank you everyone for your healing prayers and thoughts.  It has been exhausting in all regards, but the outflow of love and support from all of you makes it all a bit easier.  Thanks again... now try to focus on Christmas!

Kenzie Boston Checkup

On Thursday Kenzie had her check up with Dr Rodan at Boston Childrens Hospital.  Because it can be pretty stressful getting to the hospital on time whilst finding parking (which is very scarce, and the parking garages are tight), we traveled down Wednesday night after work and school, and stayed at a Homewood Suites nearby.   Luckily they have a shuttle that will take you to and from the hospitals, so that made life a lot easier. So hopefully we will be able to pursue that option in the future!

So from the appointment we learned one key thing (that I think we already knew) ... that not much has changed.  That is both good and bad.  The bad is that Kenzie is still between 24 and 25 pounds, and that hasn't really changed much in the last year.  So with that being said at her next appointment Kenzie will be seeing a nutritionist to see how we can try and change that.  It seems to be a mix of what Kenzie can eat and also that all of Kenzie's extra movements burn a lot of calories. 

With that being said, the doctor would like to take the opportunity of Kenzie having started with new therapists at the Morrison Center to try out new drugs on her to help with her dystonia, or extra movements.  So we will be starting Kenzie on a drug called Sinemet, which is used traditionally in patients with Parkinsons disease.  Some individuals who have symptoms or gene changes close to Kenzie have shown great improvement on this drug.  It will be started at a low dose, and slowly incremented upwards depending on how Kenzie does.  Like any drug, there is potential for side effects, and in this case the most common would be nausea, or in some cases it can make her dystonia worse.  However, each doses lasts a little after 4 hours and if she is taken off the drug then the side effects will go away. Depending on how this medication does, will determine whether we continue with it or try a different medication.  There are several medications we can try if needed, like trial and error to see what works for Kenzie.  Last resort would be a discussion about surgery , but that would be a ways down the road and only if we've exhausted all other avenues.  The dystonia is important because it seems to be the single thing that is slowing Kenzie down the most in her development. 

So we will be going back down to Boston again in February.  She will have 3 appointments in one day.  She will be seeing Dr Rodan for her normal check up, she will be seen at the orthopedics clinic, and by the nutritionist. So that is 3 appointments in one day, which will make for a long one.  Hopefully we will stay at that Homewood Suites again, so that we don't have to add 4 hours (round trip) of driving in as well on top of the tired kids!!! 

We are also waiting for some lab work to come back for Kenzie, and we do not expect anything earth shattering.  If needed, we will update everyone. 

Thanks for keeping Kenzie in your thoughts and prayers!

Merry Christmas... early

We got our Christmas photos in... we are so happy with how they came out! 

Kenzie's First Day

After numerous evaluations and lots of paperwork... today was Kenzie's first day of Pre-K!  We are blessed that Kenzie was able to get in to a great center thanks to her awesome speech therapist!  Kenzie will be going for 3 hours a day, 5 days a week.  While there, she will have 120 minutes per week each of speech, occupational, and physical therapy.  She is labeled "1 to 1", meaning she gets her own ed tech to assist her as needed.  Today she did some coloring, played with blocks and puzzles, and was very interested in the other kids.  Her speech therapist e-mailed us a picture during the day... as you can see, she absolutely hates it there, haha!