Topsy-turvey...

Well, I guess this has been the longest spread in between my postings & updates, but a lot has been taking place, and not all I can go into, or want to, but want you to know that we are getting through, and we'll be okay, I'm sure.

We didn't end up going camping over Labor Day Weekend,.. we just couldn't, and greatly missed getting to go, but now all the more excited for next year.

Speaking of Labor Day,.. ON Labor Day, Ashley had a strange occurance. Her right eye lid was noticebly altered,.. it seemed very 'droopey' as though it could just run right off her sweet little face. Nothing that seemed an emergency though, but more like a nerve was being pinched, and was causing this effect.

Ashley is doing alright. She had her MRI & MRA on the 7th, and she did well. She had a really great anesthesiologist who took time to listen to my conscerns on how Ashley always seems to wake from the anesthetic so grumpy and miserable, and also how much she detests the IV still being in for long after. Most of the time they have been good to remove it quickly after she starts to complain because obviously she's okay then for them to remove it safely, but this anesthesiologist really listened to these conscerns, and she opted to do things a little differently this time. She said that kids generally wake up hard like that if they stay on the gas mask through the whole thing, but that she likes to switch them to the IV anesthetic after they have gone to sleep with the mask, and they run the IV,.. she said they tend to wake up sooo much better, and she also said she had no problem remving the IV as soon as she was safely coming around afterwards, too. Well, this was such a great experience,.. Ashley woke, and was still groggy of course, but she was in a very pleasant mood, and she just looks up at me and says gently, 'Oh, hello, mommy, I want my 'pokey' out",.. just so matter of factly, and it was also then that I noticed, and said, "Look, it's already out", and so that was neat, too,.. the doctor waited there with her, and so as soon as she started to come around and she knew it was safe to remove it, she did,... even before Ashley was coherant quite enough to even know it. That was AWESOME. She also told me how to request this whole procedure again in the future, and so a great big THANK YOU to Dr. Lee!!!!!

After the MRI/MRA, we took the elevator upstairs to the oncologist's office because I wanted to leave a message or see if a nurse could take a quick look at her, even though we didn't have an appointment. I knew Dr. Kanwar would be busy, but I though perhaps somebody could take a message, one, about the occurance with her eye the day before, as well as, two, that Ashley's symptoms were increasing rapidly again, and he had wanted me to notify him when I felt like she needed to go back on her anti-convulsive medication.

Well, he heard that we were out there, and it was getting close to lunch time so he told the nurse to bring us back because he wanted to see her himself. He told them that we live too far away to be told to make an appointment and come back. Then, he finished up with his last patient, and went, HIMSELF, down to the basement to review Ashley's MRI & MRA so he could go ahead and let me know the jist of the results right then as well. He did a full assessment of Ashley, and also said that if it happens again, I can take some shots with my digital camera and email them directly to him at his office so he can review and forward them to her ophthalmologist, too, and they can try to assess what's going on. He is such a kind & caring doctor, and I feel like we are in such good hands... it's difficult to find physicians like that anymore,.. and so when we find doctors that really let you know how much they genuinely care for you and show their deep conscern and desires to make everything better,.. you appreciate them soooooo much!!
He also switched us to a different medication after consulting with our neurologist, too, about our conscerns that the other just wasn't working well. Now, Ashley is on a chewable tablet that is fruit-flavored, tastes good, and she only has to take one HALF at a time. Well, she is now taking a whole one in the mornings, and a half one at night. It's called Carbamazepine, which is a generic for Tegretol. She seems to be doing well on it so far, but no huge improvements yet. We will plan to give this one a try for the next 3 months, and if she just isn't doing better by then, then after the first of the year, in January, he may consider approaching the board to consider her for chemotherapy treatment again.

The MRA did show the cluster again, and at first glance he said he was convinced that it was the tumor somehow pinching or spasming, but on further review with the radiologist, it now appears that it may be too far back from the tumor for it to be what's causing that. Now, the neuro-surgeon is looking at the films to try to determine if this might be something she was born with that really isn't anything out of the ordinary, but just something that is a part of her which may not be ordinary to most films,... something to that effect? Anyway, they are trying to sort it out. In the meantime, Ashley is still taking her pain meds about every 4-6 hours through the day, as she has been for about 8 months now, but the night time ones have subsided that she was experiencing the previous week before the latest scans and going on the new medication.
This new medication has possible side effects, too,... like the other one, can cause dizziness, sleepiness, and so forth. For the other, she had to be monitored for her liver function, but this one can lower her blood count so now that needs to be monitored instead... it still is by running a CBC. She was supposed to have an appointment for a follow-up last Tuesday, and have her labs done, but we had to reschedule for Wednesday afternoon. Then, we had to reschedule again, more on that momentarily,.. and she is now rescheduled for next Tuesday, October 5th, with her doctor's approval. He assured me there is no risk in the delay. Anyway, since nothing has been changing, and we can't seem to make progress on her symptoms, yet she isn't really getting worse either,.. the oncologist has decided that we can probably go ahead and wait a 12 week spread before her next follow-up and MRI, unless things change or worsen in the meantime, then he'll bump her back up again. but, for now,.. 3 months, so she'll have her next MRI the beginning of December. Ashley sees the ophthalmologist again next month, mid-October.

As far as why I had to reschedule Ashley's appointment,.. I had something pretty serious happen with me, but it's all taken care of now, and I'm okay, but I'm really lucky I didn't end up in the hospital. Four years ago, I had Grave's Disease, a type of hyperthyroidism which required me to undero radiation called, Radio-iodine Treatment, which then caused me to go into hypothyroidism. This requires me to take thryoid hormone replacement for the rest of my life. Three weeks ago, my pharmacy decided to switch me to the latest generic without my consent. The Rx was already filled, I was in a hurry, and the copay was 1/2 what my Synthroid was so I just took it and went on my way. Well, supposedly about 98% of people can easily switch from the real deal to the generic without any problems, whereas a rare 2% cannot handle it, and only absorb a little, if any at all, hormone from the generic pill,... Apparently, I am one of those freaks, as usual. So, for 3 weeks, my body has not been recieving this very important hormone, and all of the sudden I was in severe relapse... I had no strength, and couldn't even hold a pen without a fight. The left side of my brain felt like it was being squeezed, my left shoulder & arm hurt, my speech was slurring,.. everything was shutting down on me. Most people with hypothyroidism can go a good couple of weeks off their meds without any real issues, but my levels drop about 10 times faster than the average person. Because of all the stresses we have going on,.. I didn't put 2 & 2 together until I was about ready to have a stroke. My doctor recognized this right away and got me on elevated dosages of my actual Synthroid,.. I was feeling 90% better within a few hours, and have been rebounding ever since so,.. breathe easy, I'm okay! But, I'm very lucky I didn't have anything worse happen. My doctor is running about 8 differen blood tests to check for others also, and I should have the results any time now. Anyway,... enough of that, but it was quite the scare.

We've also had various other happenings occur this last couple of weeks,.. things I'm not at liberty to divulge except to a select few, but I will ask for some pretty strong & serious prayers for our family, and especially for Ashley's daddy. Things are not good... he's getting help, but we need some pretty heavy prayers.

I've been questioning her vision lately,.. it seems her book always winds up up to her nose, and she can't seem to see things well from a distance. So, she has an eye exam scheduled for this Thursday, Sept. 30th @ 2:30 pm.

I think that all about covers things for now... at least what I can tell you. I'll try to make a point of keeping things updated at least weekly again, but this last couple of weeks, well, couple of months,.. have been well,.. difficult in many ways.

Oh!! Ashley will be 5 years old tomorrow on September 29th!!!!!