Today Hayden Got her foot and leg casted for her ankle brace. She picked a blue snake skin pattern with purple straps! Fashion diva. :) She has to wear the brace because she isn't bending her ankle when she walks, hopefully with the brace and PT she'll be bending it in no time! If I didn't tell you she wasn't bending her ankle you probably wouldn't notice, she's adjusted to it so much, which is good and bad. Good because she gets around fine and doesn't trip too much and bad because she's training her body to not use certain muscles. She has occupational therapy tomorrow, there might be some kind of wrist brace involved because there is still significant weakness in her wrist, arm and hand. She has been using it more lately but she definitely avoids it as much as possible.
She also has a vision test this week, hopefully there will be no changes but I can tell she has trouble seeing out of her left eye. She compensates for that so much that the dr didn't realize there was any problem until I told her. There is however significant damage to her optic nerve which may or may not end up effecting her vision. Radiation shouldn't have had an effect on her vision (because we were able to do the proton beam) but it could have. Another thing being tested is if radiation had any effect on her hearing. I haven't noticed any change, so I'm hoping everything is all clear with that.
There has been a few things going on lately that concern me. First she's been extra sleepy lately, which is a side effect of the radiation but usually during not after. This does happen however, and Dr. mural says it's okay. Some times a few weeks after radiation you can experience late effects of it. She was having a few bad days about a week ago that with the drowsiness really started to worry me. She was being really cranky and irritable, which she hadn't been since before surgery. Then to add to it she started not peeing regularly. For three days it was only once a day, but today has been three times! Thank goodness! I start to freak myself out that there is another tumor, maybe multiple... It is possible that something growing in her spine could cause her nerves to act funny and make her think she didn't have to go. And the irritability was a huge red flag for the initial tumor. Drowsiness for Hayden is completely usual because she never naps, so when she is tired enough to sleep duribg the day...it's a little scary. But they keep saying they believe it's fine. Even after I accuse them of not knowing anything, tell them my theories, and remind them what she has exactly. It's that not I'm crazy, it's that I've been told she was fine before when all the while there was an extremely aggressive life threatening tumor growing her brain. I'm bitter to say the least. I'm sure these things are all just side effects of subjecting her entire brain and spinal cord to radiation and coming off all the medications but you just can't help but to let your mind wonder.
Other than all that she's been doing really well. I'm so proud of her!
We have a little benefit coming up soon at Baker St Pub. I'm excited for all the gift cards being donated to raffle off! Uchiko has donated 2 $150 gift cards, Z Tejas 2 $50 gift cards,among gift cards from Olive Garden, Sushi Zushi, Baker St, etc... Lots of prizes to win!! I'm hoping for a huge turnout!! Spread the word!! :)Friday sept 2nd 7-9 pm at Baker St on S. Lamar.
It's nice that Hayden enjoys being at Houston home, it makes it a lot easier knowing we have a comfortable homey place to come back to after long days at the hospital.
We love everyone and thank you all for your support and most importantly your prayers!!!