Haley’s 5 Week Update

I realized in the last update I did not include a key piece of the puzzle. We finally received the pathology report! It took so long because the two pathologists here did not come to the same conclusion. That meant the samples were sent to Massachusetts for a second opinion. After all that they believe the tumor is 99% benign and 1% fast growing. Pretty good odds…but I still think about that 1% every now and then. The name of the type of tumor is only a few years old.

We discovered from her doctors all is going well and all the things we find different are expected because of the location of the surgery. It was again verified how much easier the tumor came out then they expected even with going in a second time to get some areas that were stuck. I asked again how large the tumor was and was told about the size of a large lemon or small orange. We learned she does not require any more surgeries at the moment. Even better is that she does not need chemo! However, she will need to have MRI’s about 4 times a year. Based upon the first one I am not looking forward to her being sedated, but it is certainly a lot better then surgery. I now know I will need to get a babysitter when that day comes. Maybe they will have a different medication to give her that will work a little better without the screaming and kicking and crying.

We still do not know what her vision limitations are because we know there are some. We are not sure if we should take her in to see someone for that because we are not sure she will be able to perform the tests required. She clearly has some speech and processing issues.  Because of that we are talking differently in our home now as we help Haley review/relearn/remember words. Reading time and books is a must. We are playing a lot of games that really are for a purpose.

She still is progressing little by little. As long as we improvement and progression we are happy…even though we wish it was faster!

Halloween was fun! We had a pirate princess, Rapunzel, rock star and a vampire princess. They all came up with with and put together their own costumes! They were open to suggestions but in the end made their choices. Little Chef D forgot her white gloves and jewelry for this picture, but she got her big pony tail bun which is her favorite hair style. Little Chef C is in fact wearing one of my old ballet costumes! She really wanted to wear one and then came up with her costume name once we found one that fit.