A walk, a care bear, a normal head

It's been a while, and I am sorry about that. Life keeps getting in the way. Every time I have a few minutes free I am finding something that needs to get done, like paying bills, or decorations for a special someone's upcoming birthday party. So what has been going on in the past 2 months?

Amelia (and her family and friends) participated in the Hydrocephalus Awareness walk. She was the leader of Amazing Amelia's Army. The motto was "We are in this fight together" and it couldn't be more true. Every battle she has to face, she has an army of people behind her fighting for her too. I love that she has so much support from all around the world. I wish we could just give everyone a big hug. Amelia was so excited to show the world that she was walking with her walker. The biggest supporter for her was her NS Dr. Naftel. He really is an amazing person. You can tell he holds a special place for his patients in his heart. I honestly think Amelia holds the highest honor as she was mearly 16 hours old when he met her and 20 hours old when her life was in his hands. That is his girl.

Speaking of Dr. Naftel and surgery, since Amelia's last surgery we have been blessed by a "normal" head. Normal for us means scars on almost every possible place on her head, hair slowly growing in, misshapen, and fluid free. That is the most important part, fluid free. We had a scare Friday night, her tube slipped and was down by her eye. We didn't know the tube slipped and thought that it became disconnected and move forward. We will be waiting for an appointment time and date tomorrow morning. I don't think the tube should have moved, especially after over a month. So I am anxious to hear what Dr Naftel has to say about that. She also has an appointment with a new specialist regarding 2 different issues (new ones) and once we are given more information on that (Tuesday) I will update everyone.

Halloween was a hit with Miss Amelia. She was the cutest care bear ever. Everywhere we went she was complemented on her costume! She mastered saying Trick or Treat, Smell My Feet, but instead of saying it to the correct people she just said it in the car, or outside waiting. Little snot!! She did have fun watching kids in their costumes and had fun picking candy up and putting it in her bucket.

Halloween did make me really sad. It is really hard to watch all these kiddos her age, younger, older, running around in their costumes. Walking to the doors and saying trick or treat. I was hoping that the coping with her not walking would get easier, but the closer she gets to 2, the more she realizes she can't do the same things and is upset by it, the harder it is.