Dear Lexi,
Hey sweet girl. It’s been awhile since we wrote an update. We have been to a few very frustrating appointments and I have been avoiding my emotions about it.
I think last time I wrote to you I mentioned that we were referred to the vascular malformation clinic because Dr. Green thought they could help with your foot. We weren’t planning on going because other doctors had told us that there was nothing they would do to reduce the mass. Well, when we went to your regular oncology ultrasound our favorite tech asked if we had been to the vascular malformation clinic and said there were great doctors and that we should at least see what they had to say. So, I reluctantly scheduled the appointment.
The team of doctors that form the clinic only meet once a month and we were able to get down there on February 10, 2016 to go discuss our options. I tried so hard to not get my hopes up but it was impossible. We drove down to Denver and met with the team. They were pretty confident that you would benefit from sclero-therapy. They said it was a series of injections that would somehow work to reduce the mass of your foot. Yay for not having to have shoes custom made! Before they wanted to give a realistic idea of how much it would help they wanted to see an ultrasound of exactly what they were working with. So we trekked down the hall and the team of 6 plus us piled in a room to see inside your foot. When we went to go back to the room the doctors sat outside of the room and talked things over between themselves. I knew that couldn’t be good. They came back in and said that because of the way the malformation is situated the therapy would only, at best, reduce the mass by 25%. You’d still need custom shoes and there is risk involved. SO NOT WORTH IT. Part of me was so upset that they got my hopes up again for nothing. The other part of me was happy that we get to keep my favorite little fat foot in the whole wide world.
Two days before your appointment we had a consultation with the Hanger Clinic in Ft. Collins to have your foot measured and casted for new shoes to be built. It was a bust. Aside from the fact that they sent us to the wrong location for the type of service we needed, they didn’t cast your foot and told us we would have to meet with their cobbler. They tried to talk us into paying out of pocket to have a cobbler make your shoes and acted like we were a total inconvenience. Apparently, this location didn’t have experience with custom making shoes for anyone in children’s sizes.
Luckily, while we were at vascular malformation I had mentioned what a bad experience we had trying to have your shoes made. They went to their amputee physical therapist and asked if he had any recommendations of places that could make you shoes and had experience in making them for children. He came and talked to us and brought along an entire list of companies that could help you!
We have an appointment tomorrow, 2/18, to get you some new shoes! They can’t come soon enough your poor toes are poking through your current pair. Here is to hoping that everything goes smoothly.
In other news, you’re kicking butt at cheer. At your last competition you kept running out of formation to give my “thumbs up”. Although it’s not what you were suppose to be doing, it was pretty darn sweet. Your next competition is next weekend and I’m sure you will do better. You are about the sweetest three year old I have ever met. Your tantrums are quite minimal and usually only happen when you’re beyond exhausted. You love animals and your siblings. Your speech is finally becoming understandable to people other than me. You love arts and crafts, swimming and bath time. I thank God every day that you are mine and you came as a twin. You and Libby have such a special bond and I feel beyond blessed that not only do I get to witness you two growing up, but also that I get to raise you. Mark, Sam and Miley are just smitten with you and Lib. I am excited to see those bonds grow even stronger.
I love you to the moon and back, infinity times infinity, forever and ever.
Mom
xoxo
Dear Lexi 