Peach's Neet Feet & Whatnot

First off, a picture of Brynlee at the piano. She loves to play the piano, and hopefully she will be wonderful at it someday.

 

Several months ago when Brynlee relapsed I applied for Brynlee to receive some custom-painted shoes from an organization called Peach's Neet Feet. They provide these shoes to kids with cancer and also kids in wheelies (wheelchairs). I figured since Brynlee is dealing with both of these things that she should qualify. We were excited when we got our shoe sponsor and learned that her shoes were being painted and when they were finally on their way.

 

We were assigned some shoe fairies to deliver Brynlee's shoes, and our shoe fairies just happened to be another cancer fighter and his mom. Tristan was diagnosed with a bone cancer (I hope I am getting this all correct), and his cancer was in his foot. He underwent chemotherapy treatment and I believe even radiation treatment but also had to have his leg amputated below the knee. I remember seeing a picture of him when he went in for his amputation and he was walking so bravely for the last time with both of his legs into the operating room. That picture has been stuck in my mind ever since, so it was really an honor to get to meet Tristan and his mom. Here are a few pictures from the day they delivered Brynlee's shoes.

Not only did Brynlee receive her shoes, but she also got a cape, a hair bow, a bracelet, hat, stickers, and Peachy tattoos. 

Brynlee really didn't want her picture taken. 

 

We are so glad that they came to bring Brynlee her shoes even after they had a long day at Shriner's and even though Tristan's new prosthetic wasn't fitting him so well that day and giving him discomfort.

 

Fast forward to a week ago when Brynlee was able to get her Broviac out. I was so thrilled that we were able to have her central line out and that we were able to get it scheduled so quickly. Her line removal wasn't scheduled until 2:30 on Monday, the 20th, so it was a little bit difficult trying to keep Brynlee happy that day since she wasn't able to eat before the removal, but she did great. Dr. Scaife, who is the surgeon who has placed both of Brynlee's Broviacs and did her biopsies, was able to remove her line. We both agreed that we didn't want to be seeing each other for any more of these procedures and that hopefully Brynlee wouldn't need the line put back in. Dr. Scaife is a very serious doctor, but we got a few smiles and laughs out of him that day. The line removal went really well and before I knew it Brynlee was awake and ready to eat and go home.

 

Since her line was removed, things have been pretty quiet for us. We finally got all of the paperwork filled out and we were able to get the prescription for the Accutane filled. She will start taking the Accutane tomorrow since I had to call the oncology clinic today to find out just exactly what my options are for giving Brynlee a capsule of medicine. Since she is only 2 years old, I knew that trying to make her swallow the pills would probably not work, so we were given permission to poke a hole into the capsule and drain the liquid out into some applesauce or yogurt or something to get her to take it. I hope it works! She will take the Accutane twice a day for 2 weeks and then go off it for 2 weeks and repeat that schedule for a total of six months.

 

Brynlee has also resumed her hippotherapy (horseback riding therapy) and has been doing great. What a difference a year makes! Last year she had to have a back rider and she usually buried her head in her blanket and cried and whined. So far we have attended two sessions, and she has been talkative and happy and has been riding without a back rider. Last week she even rode sideways and backwards. It has been a relief that she has been doing so well with it.

 

We also went to our first physical therapy appointment in nearly a month today. Overall, it was an okay appointment. Brynlee doesn't like to be worked, so she fussed a little bit, but I was able to talk to the therapist about getting Brynlee a hand trike. They actually had one there today that she was able to use, so her therapist measured her so I knew which size to get and then I ordered one for her when we got home. I hope it doesn't take too long to arrive. I had been looking at getting a tricycle for Brynlee for awhile now, but I wasn't content with a regular tricycle. Finally, I looked into getting her a hand trike so that she could power it by herself. Insurance does not pay for things like a hand trike, and they are not cheap, so I wanted to make sure that I was getting the best thing for Brynlee that will last her hopefully a couple of years. After speaking with her therapist and seeing her on one today, I know that this will be a good thing for her. When we go outside, she is usually stuck on the grass or in her stroller, so I am excited to give her the opportunity to ride around with her sisters. Very exciting!