Well, things have been quite busy as usual, and now it's tax time to boot. I apologize for not getting an update posted after Ashley's appointment... it's just been one thing after another, but I owed you all that so I'm sorry to keep you wondering again.
Ashley's ophthalmology appt. went well,.. we were there for more than 2 hours doing tests,.. tests that they always end up saying how difficult it is to really know anything for certain at this young age, prior to anything bluntly obvious, at which point is often too late. That part is never encouraging, but at least they keep trying,.. that IS encouraging. It seems like her peripheral vision is still in tact for the most part, although still very much in question.
We also met with our broker, and got the insurance all set up through the company, and it's finished being approved, and will take effect next Wednesday, Feb. 1st. Yeah!!! Thank goodness. Now, there is even more work to set to,.. getting all the appointments set up ASAP, and all the medical records transferred over before them. Ashley needs to see the oncologist right away, as well as she needs to get her baselines done with the Neuro/Psych. and endocrinologist ASAP, too.
I'm still working on the foundation,.... it's slow going, but I have high hopes for it,.. I'm not publishing it's site until we are more solid. We have another new site up for Brittney's medical conditions,.. http://after-light.com.
I'm hoping to give Ashley's site at http://4ashley.com a face-lift one of these days,.. but things are just too crazy right now. The girls are all doing great though, despite the fast ride. They're doing wonderful with their school lessons,... I'm so thankful for homeschool!
I'm beat so I'm off,... Love to you all, and will post more after the big 'switch'.
Thursday, January 26, 2006
Friday, January 06, 2006
And so a new year begins...
An update to share, but not the best of news. It seems that the tumor board met together last week, and have made their decision regarding Ashley's current state. Her oncologist called me the day before yesterday, and said that due to her symptoms and the growth of the right tumor,.. they feel we should proceed with therapy. Yes, chemotherapy. My heart has sunk into my ankles, and my head is currently in a dense fog. We knew this was coming sooner or later, but I just don't think any parent can be fully ready for those words, or any unpleasant news at any point in their child's life. While I am thankful that there is treatment,.. I am also saddened to know what lies ahead for my sweet shining star of a little girl. Please be praying for Ashley, and for our family. Please pray for my own strength as well because my heart has taken on so much these past two years, and although my faith is incredibly strong,.. I am, afterall, only human, and I, too, need to be held up from time to time. Things were going along fairly well, and now I feel as though I'm spinning again. Make it stop, my heart pleads.
The good thing,.. I have good friends. I also have friends who have already walked in my shoes and they've done it down the same path. I am thankful to know other NF families. We need eachother, that's for sure... even if we are all normally too busy in our own happenings of life to be in touch regularly. We know we're out there, and we know how eachother feels. We know we are not alone.
We've been sick the last few weeks,.. crummy stuff going around, but Ashley has managed not to get it a second time. I've had a splitting headache all week, and the latest news coming from the hospital hasn't helped, but I am starting to feel better now.
Ashley will be seeing the ophthalmologist on Wednesday morning. We'll find out then if her field of vision is narrowing as her oncologist fears. It is felt that her MRI should be moved up even sooner now, too.
Wednesday afternoon we also will be meeting with our insurance broker to finish up on the new group insurance through our company. We are going with the best through KP which will cover everything 100% after $5. copays for office visits. What a blessing! It should be in effect by the 1st of February, and if her oncologist had his way, he says he would prefer we had our first appts with the new doctors by the following day. We will do our best, of course. He says he plans to work closely with her new doctors on his findings and his personal feelings,.. hoping things won't get delayed with the transfer. It'll all be the best for Ashley, but a delicate transition at a critical time as well.
I will update on other things at a later time. I am doing this update right before bed, and am exhausted beyond all reason tonight.... Godspeed to all. I know we each have our own things in need of prayer, love & support.... you are all in mine and have mine, as we hope we continue to be in your's. Much love & goodnight.
The good thing,.. I have good friends. I also have friends who have already walked in my shoes and they've done it down the same path. I am thankful to know other NF families. We need eachother, that's for sure... even if we are all normally too busy in our own happenings of life to be in touch regularly. We know we're out there, and we know how eachother feels. We know we are not alone.
We've been sick the last few weeks,.. crummy stuff going around, but Ashley has managed not to get it a second time. I've had a splitting headache all week, and the latest news coming from the hospital hasn't helped, but I am starting to feel better now.
Ashley will be seeing the ophthalmologist on Wednesday morning. We'll find out then if her field of vision is narrowing as her oncologist fears. It is felt that her MRI should be moved up even sooner now, too.
Wednesday afternoon we also will be meeting with our insurance broker to finish up on the new group insurance through our company. We are going with the best through KP which will cover everything 100% after $5. copays for office visits. What a blessing! It should be in effect by the 1st of February, and if her oncologist had his way, he says he would prefer we had our first appts with the new doctors by the following day. We will do our best, of course. He says he plans to work closely with her new doctors on his findings and his personal feelings,.. hoping things won't get delayed with the transfer. It'll all be the best for Ashley, but a delicate transition at a critical time as well.
I will update on other things at a later time. I am doing this update right before bed, and am exhausted beyond all reason tonight.... Godspeed to all. I know we each have our own things in need of prayer, love & support.... you are all in mine and have mine, as we hope we continue to be in your's. Much love & goodnight.
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