Saturday, September 27, 2014
This month still hasn't been easy, but definitely seeing some signs that we are on the up and up finally.
Food is still a struggle. Very limited diet, and very limited absorption.. she is pretty much holding her weight minus a few but I am much more worried about the nutrition or lack of she is eating or her body absorbing. Seeing a few signs of rebound makes me much relieved.
The climb back up the hill is slow, so slow it is almost as frustrating as the very fast trip down the hill.
I think it is the waiting, the waiting each morning to see if I can see any even tiny bit of improvement in her face. The inability to do a thing to change the course. The improvements are so slow and so tiny it can take a week to confirm that she actually has bounced back a bit.
We have skipped a few months of dental care, and that seem's to have given her the extra wiggle room to get back on track.
Derek and I both caught the virus going around- goodness! Took me two weeks. I am totally blaming those dangerous live virus flu sprays they give to children. Walgreens and the Pediatric offices have been spraying that virus up little noses like mad, which means all the little ones are running around shedding(spreading) live virus everywhere they go for weeks. Sigh, flu shots and sprays should be banned- nasty and ineffective at prevention, though spreading they are doing a fine job. Based on the fever, green snot and major ear and head pain I suspect I had an ear infection/sinus infection. I managed without antibiotics. Though I admit there were a number of days I was sick enough and miserable enough I really thought about going in and shortening my misery, but knowing that Abby cannot have antibiotics and knowing that any time we do use antibiotics we are risking a big trade off on overall health and scary side effects(killing your Mitochondria is high on the list of danger) I am proud of myself that I "sucked it up'. I at least had motrin to get me through the worst of it where Abby gets zip,zero nothing to help her. I am so incredibly grateful that Abby did not catch this one! I have no idea how badly it would have wrecked her. She seems to catch so many colds but they always come and go quickly. For the most part she just doesn't catch these big bad ones. Of course I probably just cursed ourselves by writing that!
If the ragweed would just go away I am confident we would get Abby zipping back along a little more quickly. The temperatures sure have been more conductive to better health for her so soon enough the ragweed will be gone.
I am a bit worried with all the bladder bleeding that seems to not want to go away with her. It seems to flare when she is in a major flare(last couple months) so hopefully it will settle down and heal up now that she is feeling a touch better.
The weird hickey rashes that happen when anything touches her seem to be determined to continue. She will go a week or so and hardly get any and then boom! Suddenly she is covered with them. They are clearly caused by her clothes, pillows, etc where it is pressed against her sleeping or even sitting. They seem to heal up quick enough. She has bloodwork again next month so if it is anything concerning I would think that would catch it.
Toenails are nearly "normal" though we are kind of holding our breath, based on how upset her bladder is she might have had enough stress that we might see another stop and go on those toenails. Hope not.
Her feet look pretty normal. Too much walking or too little and they cramp up but I think she has found a good balance. The calluses are still in crazy spots but seemed to have slowed.
With Abby it seems her body is in a constant stage of transformation. So many odd little issues that come and then go, making room for another crop of oddball symptoms to crop up. I am never sure what to expect next, but holding my breath seems to be working because despite the slew of oddball things, nothing yet that we cannot handle at home.
Speaking of transformations, Derek's hair has undergone a transformation. It started with shedding, and we guessed midlife was finally striking and we have both been preparing for the "bald spot".. :-) I have always loved his great thick hair. To our great surprise, his hair was falling out to make room not for gray hair, but for "curly" hair. I mean truly curly hair. His hair has always been very straight so this has been quite the novelty. Why we are surprised is beyond me,after all we have Abby who's body has yet to quit surprising us.
I usually mourn the end of summer, but with Abby struggling most of it this year I cannot wait to see it go. Winter has promise this year and we are going to appreciate it immensely if winter means the improvement of Abby's health.
Hopefully this week we can add a food(something green!) back into Abby's diet. Fingers crossed!