WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Saturday, January 4, 2014

Hiding Away

Despite the second bad reaction to the SubQ Abby is holding up.


She has has some reasonably good days this week besides getting yet another cold. If I compare her today to where she was last year? She has climbed back there. Slowly, very slowly but she is steady. For awhile we were losing some ground, but it was some new reactions causing issues I think- we removed more and she has gotten back to baseline. Another reason I am far more confident that the Mito Depletion is secondary. Meaning that treating the primary is key.


This last round of SubQ seemed to cause her to react to yeast. With the first treatment she lost a few foods so this was not unexpected. On one hand I am major bummed that just as I conquer a few great gluten free yeast bread recipes for the bread maker she can no longer have them. On the other hand, who really needs yeast bread? It has opened a new Challenge for us. Irish Soda Bread and tortilla's are working great for her "bread." I have been flipping through finding some new versions to try and of course to modify for Abby. Call it entertainment and an opportunity to find a way to incorporate more nutritiously dense foods that her system can handle.


The toenails of course are looking rough from August, they had just started to grow again and I suspect this last round of SubQ reactions will slow them down for awhile. On a positive that means less nail cutting, right? There is always a positive. If they aren't growing the cuticles don't get as irritated(when the nails stop growing, when they start again there seems to be a raw edge that irritates her cuticles as it grows past) so we don't have to worry as much about infections, tumors, etc. Some hair loss, but that is pretty standard with a bad reaction these days. This time around she got the most unique hives. Usually when Abby reacts, she gets one big hive on her cheek, usually the same spot each time. This time she woke up 2 days later and looked like she had the measles! Thankfully they faded away in 24 hours, but left her itchy for days. She has gotten more hives in general since then. Completely random, like a big one just pops up on the side of her foot but will fade away. The next one will flare for a couple hours somewhere else and just as quickly fade away. Her kidneys are finally settling down so that is a good sign we have seen the tail end of it this week. The pinprick rash isn't as big this time, but we found it on her arms the other day, though it seem to have disappeared after a day. I tell ya, her body sure has it's own way of handling things. :-) The only other kind of new thing we have noticed is that she has had some increased issues with her circulation. The other day she was standing there talking to me and the front of her legs were nearly black, the back very pink- she moved around for awhile and it disappeared. Weird, but she for the last year had a lot of mottling and she has always had a hard regulating her body temperature. I wish I could capture in picture the vivid violet color her nails turn after a reaction, it is nearly neon, really a lovely color except nails should not be that color! :-)


The reaction was "worse" this time since it caused her oxygen saturation to drop and some serious heart racing, but it seems to have worked out of her body quicker- bonus!


Not sure what we will try next.

Thanks to my corn support group I have a lead on a couple compound pharmacies so we can try one last time at trying to get some meds clean enough for us to make the final determination on whether it is the fillers or the meds. I suspect some meds she will react to, but surely not all?


She see's her immunologist next month.

Pretty much baseline right now, and we are being very careful to keep it that way.

We are on heavy duty lockdown around here. Lots of hand washing, good sleep, good nutrition. Avoiding reactions like the plague since they seem to contribute to her body being unable to fight off all these colds. Abby doubling down on rubbing in Vitamin D oil on her skin,Vitamin D is essential to fighting off the flu.

Right now with so many people with the flu or getting the live vaccine and shedding the flu all over town leaves us hiding away avoiding people and their germs as much as possible. Frankly, I am shocked I did not bring anything home when I was out Christmas shopping. It was shocking to see really sick kids with glossy eye's,fever flushed cheeks, green snot, and awful coughs being hauled through TJMaxx and Marshall's while Mom's were shopping for new sheets. If you are sick and fevered? Stay home. Jeez. I felt like I was getting the plague every time we went out. I know people get sick and odds are the ones who don't look sick are likely the carrier's, I guess I am just old fashioned. If you have fever or green snot? Please don't share it! :-)


No flu shots for our family. I have posted before about "why". A really good reason is that Abby reacts badly. Beyond that? Last year it provided on average a 26 percent coverage- but that was only for certain age groups. Over 65? Prevented no deaths. Under 6 not a lot of coverage. Too much guess work, too little research and not enough results. When they have a better success rate with less potentially dangerous side effects the rest of us might consider it. For now? Hand washing, covering your mouth,good food , good rest and vitamin D have the same track record.

Abby has been pushing to keep moving more this last month or two. There is certainly a balance, but I have noticed an improvement in not just how much movement but the power behind it. It has been a pleasure to see her move. If she squats down she still get's stuck, she can get up once she fully sits down, but still cannot pull back up from a squatting position. Honestly? Now a days I have seen plenty of teens that could not pull themselves up from a squat and they are perfectly healthy, I am opting not to worry about it anymore.

Taking a deep breath and hoping all of us make it through the rest of the winter.

January 10th may bring a decision on Justina- I am hoping that the Judge opts to believe Mito exists. If he doesn't send Justina home he is saying that Mito is fake, not real. The battle will be twice as hard for so many in the Mito Community. There is a lot riding on this decision on how the public and Medical world will perceive Mito in the future. My fingers are crossed that Justina will be home with her family very soon.

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