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.

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I am a mom to Five Little Chefs who love to cook and create anything with their hands. Watching over 10 additional hands keeps me busy but is so much fun! We laugh and cry everyday, but then want to do it again the next day. That is how we know we are enjoying life!

3 Replies to "Haley's 5 Week Update"

  • comment-avatar
    Jeanne November 1, 2013 (11:52 am)

    Thank the good Lord for such spectacular results…your family is truly blessed!

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    Natalie November 3, 2013 (8:15 am)

    If you are concerned about her eyesight you can take her to a pediatric eye doctor. We took Thomas to one and he was only 2. They test differently than a regular eye doctor. I was worried about them testing Thomas because he can’t follow directions well, but the tests that they run don’t require them to be able to communicate well. Our dr is in PG, but you could probably search for one closer to you. If you are interested in the name of our dr message me through facebook and I will give it to you. I am so happy to hear Haley is doing so well.

    Natalie Jackson

  • comment-avatar
    Lissa November 15, 2013 (10:21 pm)

    Kimmi you are amazing! It sounds like things are quite hectic in your life right now, and I would love to help anyway/time I can. I’m so glad Haley is continuing to improve and can only imagine your anxiety to have it move more quickly. Your family is continually in our prayers! Do you need another bout of dinners?!?

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