Wednesday, November 10, 2010

Kylie's Before & During Pictures

No card to share with you today because Kylie and I had a looong day at Seattle Children's Hospital yesterday for her monthly infusion. She is doing so great with handling everything that she has been dealt and we are so proud of her! She takes her medicines twice a day on her own without us having to tell her, she has been handling her weekly home injections great and she is a pro at her monthly infusions <3

One of the medicines that she is on is called Prednisone which is a steroid. She is on high doses of this particular medicine which results in many undesirable side effects like excess body hair growth, sleep disruption, extreme (uncontrollable!) hunger, fat redistribution that effects the face, top of the back & stomach. Just to name a few. There are many, many more! Even with all of this going on, Kylie still approaches every day with a smile and a positive attitude. We sure do love this girl <3

Below I have posted a before/during picture of Kylie. The top picture was taken at the end of August about a week before she was diagnosed with Juvenile Dermatomyositis (at this point, we had thought that she had Limb-Girdle Muscular Dystrophy). The second picture was taken at the beginning of November just two short months later. The physical changes in her face are dramatic but she is still beautiful to me and this is just proof that she is getting better a little more everyday <3

She will be back to 'normal' after we cut her Prednisone dose down but for now I'm just enjoying my healthy daughter and kissing those squishy cheeks of hers <3

10 comments:

Anonymous said...

Prednisone can be so so nasty. My sister has been on and off them her whole life. Huge hugs to you and your little rock star!!!

Piali said...

So nice to hear about her medical progress!! She is a brave girl indeed!
The picture is soooo cute!!
Big hugs to Kylie!!

Jackie Pedro said...

What a beautiful girl! It's wonderful to hear that she is handling it all with a smile on her face! That's a testament to her parents, too!!

faithnme said...

I have been kekeping track of Kyle's story.. First she is BEAUTIFUL. and so very STRONG.. it is amazing how much stronger they are than we can ever be. I say it all the time that I found my streingth and courage after I had my first child. because if she could be then why couldn't I.. MY prayers are still with you and your family

Hugs
Sharette

Jenny said...

She is so beautiful!!! And look and that sweet smile. Just melts your heart. :) :) :) :) :) What a super strong lil girl you have!!! Big hugs!!! I bet she would LOVE some cards from everyone! I would love to send one from me and my daughter!! :) :) :) :) :) Shes also in my prayers as are you and your family. Shes an amazing lil girl.

Kim P said...

What a sweet and strong little trooper!

I was on MEGA doses of prednisone year's ago when my neuro-muscular condition went wacky during/after pregnancy. It was tough...but it did the job. The puffiness goes away...but that cute smile is surely permanent!

Jodi Collins said...

She is just SO beautiful Jess! And what a trooper!!! There are amazing things in store for this one I think!!! HUGS!

Anita said...

I am so glad to hear she is on the road to recovery! My thoughts and prayers are with you and your beautiful little gal!

Crafty Math Chick said...

Man steroid side-effects S-CK! I was on one for 6 days once, SIX DAYS - gained ten pounds. of course she is still beautiful, but I am so sorry Kylie has to deal with this, I hope her classmates aren't being mean as kids sometimes can be. She has the most beautiful eyes and smile, even without her two front teeth! LOL - I know what she wants for Christmas! I look forward to the day she is 100% better AND off the Prednisone (which gave my mother panic attacks). BIG HUGS KYLIE!!
~Meredith

Anonymous said...

She is still as cute as a button and so brave, I know you are so proud of her! Keep smiling girlfriends!!!