Well, Ashley has some exciting news,.. she has her first loose teeth!! This is very, very exciting to her because she has been waiting soooooo long for it to finally happen! Both of her sisters have lost several teeth already, and she's seen the exciting 'evidence' of the Tooth Fairy's visits time and again. Brittney even tricked the poor Tooth Fairy once with a fake molar she got from her cousin! It worked the one time, but we had a little talk about how it was wrong to trick her, and she promised never to do it again,.. but she still thought it was pretty cool to get away with it that one time! LOL! Anyway, little Bug has been waiting her turn for sooooooo long, and has made me check her teeth periodically for the last year, at least, LOL. Anyway, we actually hadn't checked them lately, but she bopped her mouth this evening, and then said, "hey, my tooth wiggled!!",.. almost out of habit, I started to say, 'not yet, sweetie, you're still too young...' when I realized, holy smokes,.. she's going to be FIVE years old in just 8 weeks,.. OMG, she IS old enough!! So instead, I told her to come let mommy check, and low & behold, BOTH of her bottom two front teeth wiggled. In fact, they are more than mere wiggly,.. they are loooooooosey goosey!! I'd be surprised if they take more than a couple of weeks to come out.
The Tooth Fairy is going to be busy at OUR house here shortly because we've got at least 4 loose teeth between all three girls, and our Tooth Fairy got something started she probably should have thought through better when she got started 3 years ago,... !! Our Tooth Fairy, the doll that she is, LOL,.. leaves not just a shiny quarter,.. no, our Tooth Fairy is a rival among Tooth Fairies,.. our Tooth Fairy leaves a special glittery bag (that magically disappears afterwards when nobody is looking) filled with goodies,.. a new toothbrush, toothpaste, floss, sugarless gum, stickers, hair foo-foos, nail polish, flavored chapstick, and other lil' goodies (Thank you, Dollar-Tree!!), not to mention 3-5, in CA$H,... (to quote Courtney: "My Tooth Fairy ROCKS!) She also leaves a trail of Tooth Fairy 'Dust' (aka confetti) from their pillow to the windowsill,.. (sometimes, they roll over on them while they're sleeping and a couple stain a tiny star, or whatever shape they happen to be, on their cheek,... we call them Tooth Fairy 'kisses'!). What a mess to clean up the next day,.. Oy! If I could go back in time,.. I'd smack some sense into myself!! No, not really,.. I love it! And good intentions,... adding to those precious memories they'll treasure their whole lives, but didn't think about having times when the Tooth Fairy would need visit this household 3, 4, or 5 times within a mere month or two!! LOL,.. Thank goodness our Tooth Fairy 'retires' when kids turn 10 years old,.. Courtney wasn't too happy to learn that as she only has 2 years left, but que sera sera! LOL
Anyway,... Ashley's VERY excited, and already made her round of phonecalls to her Grandma and Nana. Daddy is on duty tonight @ the Fire Dept. so he'll have to wait for news of her 'wiggley toofs' until he gets home.
Thursday, July 29, 2004
*difficult*
Ashley is doing well, although still fighting me pretty hard on taking her medication so her pain episodes have been more frequent again. It is difficult for her to understand that she will start feeling better again if she will just take her medicine regularly like she's supposed to. We could use prayers on this.
Tuesday, July 27, 2004
A little less fuss!
Ashley is doing well,.. it's taking some coaxing to get her to take her Depakote, and get her back into routine,.. she's been really fighting me off on it, but we know it helps so please pray for her will to soften so she'll take her meds with a little less fuss. Thx!!
Monday, July 26, 2004
Oops!
Just wanted to let you all know that Ashley's appointment with the Neurologist was canceled, Friday,... they agreed that for just being a follow-up appointment it would be much easier to just obtain copies of all of the oncologist's notes, and so forth, which would be better information that my own rendition, LOL, not to mention save us an un-necessary $40 copay.
As far as her appointment with Oncologist goes,... well, what can I say but,.. Oops! It was an early appointment, which I don't ordinarily make because we just aren't good at being early risers, and well,..we overslept! Since Ashley seems to not be having any changes occuring though, I asked if we couldn't reschedule for next month instead, and so they agreed that was a feesable request. It saves an additonal & un-necessary $40 copay for this month,.. we just saved $80 for this month! Anyway,.. her next follow-up with him is now scheduled for Aug. 23rd '04.
As far as her appointment with Oncologist goes,... well, what can I say but,.. Oops! It was an early appointment, which I don't ordinarily make because we just aren't good at being early risers, and well,..we overslept! Since Ashley seems to not be having any changes occuring though, I asked if we couldn't reschedule for next month instead, and so they agreed that was a feesable request. It saves an additonal & un-necessary $40 copay for this month,.. we just saved $80 for this month! Anyway,.. her next follow-up with him is now scheduled for Aug. 23rd '04.
Thursday, July 22, 2004
It's a keeper!
Ashley had her appointment with the ophthalmologist on Monday. Sorry I haven't updated on that until now, but this week has been pretty busy, as most are. She looked adorable, and got a lot of attention as we left,.. wearing one of her special hats, and a pair of dark sunglasses to protect her eyes after having her eyes fully dilated. It takes hours for them to go back to normal, and even a little light can be terrible painful.
Anyway, the doctor appointment Monday, it went well though,.. there are no visible changes in her vision, and he, too, is still baffled at the eye pain epsiodes. We go back for another follow-up in 3 months,.. Tuesday, October 19th.
Speaking of the eye pain episodes,.. I didn't really think that the anti-seizure medication had really been showing much improvement for her, but this past week, we pretty much eliminated her taking it (she is getting pretty sick of it, and so I thought I'd give her a break in order to see what would happen). Anyway, after several days, the really bad episodes came back. So, although she's not happy about it, we will be continuing the medication!! Apparently, it's been helping more than I had even realized. The last few weeks have been so busy that I hadn't really noticed that the episodes, although still fairly regular, had not been so high scale in severity. I noticed that w/o the medication, that the neck pain also came back, whereas it seemed to have subsided. She also had a few episodes wake her in the night which has been rare. I'd say, for now, the medication is definitely a keeper! Anyway, something to discuss further with the oncologist when we see him this Monday. I'm wondering if we should consider increasing the dosage a little bit more,.. perhaps we'd eliminate even more of these occurances, and severity, but at the same time, I don't want her liver to be put at any extra risk than absolutely necessary either.
I also want to discuss any possibility of pushing her MRIs out a little farther,... we just can't handle adding another $1,000 -$2,000. to the pile every couple of months. They're eating us alive.
Anyway, I'm trying to get more involved now, too, with the Oregon NF Support Chapter, as well as people linked to the National Neurfibromatosis Foundation,... to see if there are any other alternatives, suggestions, or whatnot they can help us come up with before we're burried in medical debt. I'm making new NF friends, too, which is excellent support to have in addition to all of you. I have a new friend, Melinda, whom also has NF, as does her daughter Shaylee, who is a year younger than Ashley. Shaylee & her family live very near to us,.. they are only about a 25 minute drive away. Please also keep Shaylee in your prayers when you are remembering Ashley,.. Shaylee is currently undergoing chemotherapy for her bilateral optic nerve gliomas, and she ended up spending this entire past weekend in the hospital due to a spike in her temperature. She may have contracted something which can be very, very dangerous when you've just had treatment. A sudden high fever can be a first sign of this. We know about this because Ashley's Grandma Carol goes through chemo for her cancer. Anyway, please keep little Shaylee, her parents, her two brothers, and her baby sister in your prayers. They need them, too!
Have a gr8 day,.. the weather is awesome, just a bit HOT,.. they said they aren't ruling us out on getting into the TRIPLE DIGITS before the weekend! Well, they sure weren't kidding,.. it's currently 102 degrees here right now! Ashley's daddy has been working in southern Oregon all week, and he said today that it was 110 by Noon!
Oh, before I close today,.. Remembering Ashley's Grandma, Carol,... Her CH125 counts went from 11 to 23 in the couple of months before the last, then just in this past month she went up further to 34. By the time she has her CAT scan and further bloodwork, prior to starting any chemotherapy again,.. another 3-4 weeks will have gone by. The doctor did tell her that as long as her numbers stay under 50 that there is no reason to panic yet, but we are conscerned about letting it get so close to that. By the time she starts her third round of chemo, her counts could be only a few digits below that so please pray that God will sustain her numbers, and that they will show a positive reduction rate with this next round of chemotherapy. Please also pray for the pain & discomfort that she has as a result of certain tumors, to be diminished... she needs our prayers for peace & strength, too. I know she has to be just as worried as we are, although she's such a trooper she never likes to let anyone know when she's struggling with it, and never wants to worry anyone else.
That's just the incredible person she is,.. We love you, Gma H!!! (((BIG-BIG HUGS)))
Thank you all, again, for all of your prayers & support for both Ashley (& her Gma),.. I'll plan to post again after we see the oncologist Monday. Until then,.. have a safe & happy weekend, drink lots of water, and don't forget your sunblock!!
Anyway, the doctor appointment Monday, it went well though,.. there are no visible changes in her vision, and he, too, is still baffled at the eye pain epsiodes. We go back for another follow-up in 3 months,.. Tuesday, October 19th.
Speaking of the eye pain episodes,.. I didn't really think that the anti-seizure medication had really been showing much improvement for her, but this past week, we pretty much eliminated her taking it (she is getting pretty sick of it, and so I thought I'd give her a break in order to see what would happen). Anyway, after several days, the really bad episodes came back. So, although she's not happy about it, we will be continuing the medication!! Apparently, it's been helping more than I had even realized. The last few weeks have been so busy that I hadn't really noticed that the episodes, although still fairly regular, had not been so high scale in severity. I noticed that w/o the medication, that the neck pain also came back, whereas it seemed to have subsided. She also had a few episodes wake her in the night which has been rare. I'd say, for now, the medication is definitely a keeper! Anyway, something to discuss further with the oncologist when we see him this Monday. I'm wondering if we should consider increasing the dosage a little bit more,.. perhaps we'd eliminate even more of these occurances, and severity, but at the same time, I don't want her liver to be put at any extra risk than absolutely necessary either.
I also want to discuss any possibility of pushing her MRIs out a little farther,... we just can't handle adding another $1,000 -$2,000. to the pile every couple of months. They're eating us alive.
Anyway, I'm trying to get more involved now, too, with the Oregon NF Support Chapter, as well as people linked to the National Neurfibromatosis Foundation,... to see if there are any other alternatives, suggestions, or whatnot they can help us come up with before we're burried in medical debt. I'm making new NF friends, too, which is excellent support to have in addition to all of you. I have a new friend, Melinda, whom also has NF, as does her daughter Shaylee, who is a year younger than Ashley. Shaylee & her family live very near to us,.. they are only about a 25 minute drive away. Please also keep Shaylee in your prayers when you are remembering Ashley,.. Shaylee is currently undergoing chemotherapy for her bilateral optic nerve gliomas, and she ended up spending this entire past weekend in the hospital due to a spike in her temperature. She may have contracted something which can be very, very dangerous when you've just had treatment. A sudden high fever can be a first sign of this. We know about this because Ashley's Grandma Carol goes through chemo for her cancer. Anyway, please keep little Shaylee, her parents, her two brothers, and her baby sister in your prayers. They need them, too!
Have a gr8 day,.. the weather is awesome, just a bit HOT,.. they said they aren't ruling us out on getting into the TRIPLE DIGITS before the weekend! Well, they sure weren't kidding,.. it's currently 102 degrees here right now! Ashley's daddy has been working in southern Oregon all week, and he said today that it was 110 by Noon!
Oh, before I close today,.. Remembering Ashley's Grandma, Carol,... Her CH125 counts went from 11 to 23 in the couple of months before the last, then just in this past month she went up further to 34. By the time she has her CAT scan and further bloodwork, prior to starting any chemotherapy again,.. another 3-4 weeks will have gone by. The doctor did tell her that as long as her numbers stay under 50 that there is no reason to panic yet, but we are conscerned about letting it get so close to that. By the time she starts her third round of chemo, her counts could be only a few digits below that so please pray that God will sustain her numbers, and that they will show a positive reduction rate with this next round of chemotherapy. Please also pray for the pain & discomfort that she has as a result of certain tumors, to be diminished... she needs our prayers for peace & strength, too. I know she has to be just as worried as we are, although she's such a trooper she never likes to let anyone know when she's struggling with it, and never wants to worry anyone else.
That's just the incredible person she is,.. We love you, Gma H!!! (((BIG-BIG HUGS)))
Thank you all, again, for all of your prayers & support for both Ashley (& her Gma),.. I'll plan to post again after we see the oncologist Monday. Until then,.. have a safe & happy weekend, drink lots of water, and don't forget your sunblock!!
Tuesday, July 13, 2004
*healing*
It's been a couple of weeks since my last post,.. we got the chance to take some much needed vacation time. We are all doing well, and hope you are too.
Ashley is still having her eye pain episodes. At this point, I would have to say that we're still not seeing any significant help in using the anti-seizure medication. She sees the oncologist again in a couple more weeks, and so we'll see if he thinks she should keep using it for awhile longer before we decide to discontinue. She is also scheduled to see the ophthalmologist next Monday so we'll see if there are any changes in her vision.
Brittney's arm seems to be healing very well. She doesn't complain of any pain, which makes it even harder to keep her easy on it, because she's such a little monkey-britches, but she's feeling great, and that's important.
We had a wonderful time up camping. Daddy was able to get time off for us to go for 5 days & 5 nights, and it felt sooooo good. We just love being up there, and we really enjoy spending time with our group. They're good people, and with many of them, it's like hanging out with family... so we sort of 'reunion' with them three times a year, and we look forward to every time. It did feel good to be back home though,.. sometimes in all the business of life, you can forget just how good it feels to have your own safe place like this, but I could never forget how greatful I am for it.
We were home for 3 days, and then Scott & I took a little get-away vacation for ourselves for 4 more days & nights. He had vacation time built up, and we hadn't gone anywhere like that without the kids in three years, and so it was good for us to have that time together. We had some 'bump's with some friends in the trip, but it's okay, and we're moving on from them. Trip could have been better. We've decided we'll plan our next excursion exclusively. 'Nuf said. All in all we had a great time though, and it was a much needed get-away.
It feels awesome to be back home. I did get some devestating news about one of my family members, and so I ask for prayers w/o my disclosing any information on the matter. I have another family member who could anonimously use your prayers as well. The one I can mention is Scott's mom, who needs continued prayers for her cancer. Her levels are continuing to rise even more since I mentioned it here nearly a month ago, and she has to start chemotherapy again. They're going to do another CAT scan in a couple of weeks, and then more bloodwork after that before they decide what to do next for sure, she said. Please remember her daily!!
I will plan to post again after the beginning of the week,.. Monday evening or Tuesday morning. Ashley's appointment is Monday afternoon.
Ashley is still having her eye pain episodes. At this point, I would have to say that we're still not seeing any significant help in using the anti-seizure medication. She sees the oncologist again in a couple more weeks, and so we'll see if he thinks she should keep using it for awhile longer before we decide to discontinue. She is also scheduled to see the ophthalmologist next Monday so we'll see if there are any changes in her vision.
Brittney's arm seems to be healing very well. She doesn't complain of any pain, which makes it even harder to keep her easy on it, because she's such a little monkey-britches, but she's feeling great, and that's important.
We had a wonderful time up camping. Daddy was able to get time off for us to go for 5 days & 5 nights, and it felt sooooo good. We just love being up there, and we really enjoy spending time with our group. They're good people, and with many of them, it's like hanging out with family... so we sort of 'reunion' with them three times a year, and we look forward to every time. It did feel good to be back home though,.. sometimes in all the business of life, you can forget just how good it feels to have your own safe place like this, but I could never forget how greatful I am for it.
We were home for 3 days, and then Scott & I took a little get-away vacation for ourselves for 4 more days & nights. He had vacation time built up, and we hadn't gone anywhere like that without the kids in three years, and so it was good for us to have that time together. We had some 'bump's with some friends in the trip, but it's okay, and we're moving on from them. Trip could have been better. We've decided we'll plan our next excursion exclusively. 'Nuf said. All in all we had a great time though, and it was a much needed get-away.
It feels awesome to be back home. I did get some devestating news about one of my family members, and so I ask for prayers w/o my disclosing any information on the matter. I have another family member who could anonimously use your prayers as well. The one I can mention is Scott's mom, who needs continued prayers for her cancer. Her levels are continuing to rise even more since I mentioned it here nearly a month ago, and she has to start chemotherapy again. They're going to do another CAT scan in a couple of weeks, and then more bloodwork after that before they decide what to do next for sure, she said. Please remember her daily!!
I will plan to post again after the beginning of the week,.. Monday evening or Tuesday morning. Ashley's appointment is Monday afternoon.
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