Saturday, February 10, 2018

Valentine's Photos

We were so lucky to have found Miss Tracey!! It's quite difficult to get non-blurry pictures of Kenzie because of her dystonia.  Once again Miss Tracey not only pulled it off, she completely captured Kenzie's personality.  Kaitlyn doesn't look to shabby either!

Tuesday, February 6, 2018

Kenzie Boston Appts Jan 2018

On Monday Kenzie had several appointments at Boston Children's Hospital.  The day started off bright and early at 8 am with our first appointment ever with Dr Fogelman, who works in the orthopedics department and specializes in cerebral palsy, which is a disease that has extra movements like Kenzie has.

Dr Fogleman examined Kenzie and noted how she couldn't lay flat and when standing Kenzie is on her toes.  Lots of technical jargon left out, Kenzie is also very tight in her hamstrings which is keeping her from fully stretching out or sitting properly.  The solution for this is a treatment where botox and phenol are injected directly onto the muscle which helps calm it down and relax.  The botox treatments would require several injections, but will also require general anesthesia.  So yes, our three year old is going to be getting botox. 

During this exam Dr Fogelman also came up with a script to replace Kenzies current leg braces.  We will have this done more locally, but may need to go to New Hampshire for a couple appointments to get it done.  Also, Dr Fogelman ordered an X Ray of Kenzies hips to help start documenting how they look since she isn't upright often.  It was also going to be set up so that at our next appointment with Dr Fogleman we would also meet an orthopaedic surgeon, not because Kenzie needs something now but because she might in the future such as muscle lengthening in her calves.  An update to this... We were contacted by Dr Foglemans scheduler today and as a result of Kenzies X-rays, he wanted an appointment set up for an orthopaedic surgeon to evaluate her hips as well.  So that will be happening on March 26th. 

We also mett with Dr Rodan, Kenzies neurologist.  From his perspective things are pretty stable and since Kenzie has been tolerating her new medicine for her extra movements, we are going to slowly increase her dosage to get maximum benefit.  He explained that her MRI from December was to be expected, and doesnt show any drastic changes.  The disorder causes inflammation to ebb and flow from one side to the other of her basal ganglia.  So for now, we are good here, just monitoring for any new seizures or other odd activity.  Follow up in 3 to 4 months.

Lastly, we met up with a nutritionist who gave us some ideas and tips to add calories into Kenzies existing meals.  Basically Kenzie needs a high calorie diet.  As if she isn't already eating everything .... but she also needs to have structured snacks and meals every 2 to 3 hours.  No "grazing".

So this is a lot of information and I'm sure I'll think of something I forgot to add.  In the short term lots more trips to Boston coming that is going to be a little stressful but we will get it done.  More to come as we hear on more firm scheduled dates ... love to all

Monday, December 25, 2017

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!