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, June 22, 2013

She Ate Raspberries(and Artichokes TOO!)

She ate Raspberries and she also did well with fresh artichokes. Maybe to you this isn't big news but to us a Major positive.

When she first developed the major GI issues the food that was the straw that broke the camel's back was an artichoke, or it was perceived as contributing. Looking back anything could have been the catalyst but regardless the artichoke got blamed.


In a lot of ways like being able to add in a few previously not tolerated foods we have continued to see some positives. For the last month she has had the energy to request hair washing on a very frequent schedule. Since her hair is nearly down to her tush it is no easy task. I took on washing it with project elimination. Up until recently though, just the act of letting me wash her hair would wipe her out to the core, just washing her hair could set off a hibernation stage. I think it still costs her quite a bit(usually takes a nap after)but she feels well enough that a clean head is a priority. Lots of other positives of daily living around here. A greater interest in helping, in spending time with each of us. Despite increase in pain she is just tolerating life much better, she has enough extra energy to get through more days each week without losing ground,she still flares but bounces back much quicker, a good thing indeed. She has the energy to smile, laugh, tease- most days that is enough reassurance we are on the right track still.

In general, her sleep needs have balanced out. Of course Abby still needs a lot more sleep then most. For the last month or so she has averaged 12-14 hours of split sleep. That isn't bad at all. Especially because it is consistent. Fewer bouts of exhausted insomnia, almost no bouts of hibernations for days on end in a very long time. She struggles still with 2 asleep then 2 awake.. but I think most times she just accepts it as something her body needs. We lovingly call it Baby Abby sleep schedule- but if it works, leave it alone.


3 week's in a row she left the house 1 time each week for a Drs. appointment. She hasn't done that many outings in a month in nearly 2 years. The first visit she bounced well from.. the second a bit of a struggle and then this last one her body called mercy. Each trip sent her proteinuria through the roof, but until the third visit is settled in 48 hours. It is dropping again but not as fast.. Doesn't probably sound like a positive to most, but since in general it has take 2-3 weeks for Abby to feel better after 1 easy 1 hour or less appointment this is impressive to us.

The dental woe's continue. Any and I mean any trauma to Abby's body throws everything off. A trip for a blood draw means extra sleep, extra gastritis, extra pain and her kidney will complain for a few days after. So the very thought of dental work and the potential impact to her very sensitive and delicately balanced body is terrifying to us. We should have a better plan by next week. No way will the wisdom teeth come out unless infection sets in.. Derek's all grew in eventually, I think it would be easier to make room for the teeth then remove them- thanks to the new Japanese Princess crooked teeth are all the rage in many parts of the world, so if a wisdom tooth erupts and throws off all the great orthodontics- so what.

The saga of the shrinking feet- no idea. Dexa and x-ray's looked fine. Perhaps a combo of loss of muscle tone and resolving edema, but I still say going from an 8 1/2 to a 6 1/2 as an adult is a little too weird. However, she walks fine and beyond some pain in her toenails(like before when they died and she had granuloma tissue, though no sign yet, Abby is certain that is the issue again) her feet, knee's don't bother her. We do need to find a time to visit the Podiatrist but not urgent- we all kind of doubt anything will prevent her toenails from doing their weird thing, just a matter of fixing them when it becomes obvious. Abby and I talked about inserts or splints if on the off chance they could help with the "shrinking" feet, but she said she would not use them. She cannot wear shoes without the skin tearing on her feet so unless they make inserts for socks or ballet slippers-they aren't an option.

The improvements have been minute and if I did not pay such close attention I would have not taken note. The negatives are there as well but those as well are pretty tiny. It seems to us there is some loss of muscle tone in her shoulders and neck. A few times she has asked for help to get up off the floor because she is unable to pull herself up. Very much reminds me of her when she was just 10 months through age 5 years old and walking but when she fell she would be stuck.. However, I am wondering if it isn't new weakness at all. That she simply feels well enough to try to squat down to grab something and the weakness that has always been there is more apparent. Hard to say.

Of course the food continues to be the center of our world. It is the one thing that we have found impacts her for the positive or negative that we actually have a lot of control over. Some days it an hour by hour assessment of what she can tolerate. Other days food is easy, all her safe foods in whatever order seem to sit just fine. Over the past couple months she has had more good food days. Days where we don't have to wring our hands and plan out how to keep the food in her, or how to get it back out. :-) Abby has even had days where no sugar has been required and the food stays nicely. Definitely progress there.

I have been impatient and anxious lately. I think while we were seeing what we were doing was helping her improve that was enough. Now that she seems to have "peaked" I am feeling panic to figure this all out. If I see any sign at all of a new problem my heart races trying to figure it out before it becomes a problem. Is it or isn't it the depletion for the root cause? Is it or isn't it MCAS causing the extreme food and environmental reactions? Will we ever find a medicine that she doesn't develop a serious reaction to? Do we try to find an allergist/immunologist at this point? Is there one out there that will understand that a bag of meds may not be the answer, and if meds don't work for her, should we even bother taking her to yet another Specialist? Do we push to see other Specialists? I flip back and forth on this subject in a manic process.. in the back of my head I know odds are we may not find out. Or only time will tell- neither makes me particularly happy, but maybe it is time I accept that "It is, What it is." When a flare strikes that I can find no root cause for it sets me on edge..however, as each flare fades my optimism returns and we continue forward just enjoying how stable she is with our wacky intervention plan..

Some days I am nearly willing to give in and accept that maybe a "mitochondrial myopathy/depletion" is the root issue. That would mean that she is an original. Other days I don't buy it. My gut says that the myopathy is a given, but there is another primary issues(like MCAS) that screwed her up enough to cause a depletion. After all her depletion is pretty mild.

Then I have days where I am so happy that she is unique. By protecting her energy at all costs, at creating a safe environment, by 2 years of crazy dedication to diet, if she does have a depletion syndrome, then we have done a great job managing it without risking complications from medical interventions, she has proven herself to be better off when we embrace "Less is More". Our lifestyle choices to protect her work for us. I don't think many families make this choice. Most find the risks of interventions to chase more normal lives to be healthier for their emotional wellbeing- we are very lucky not to have the same social needs. It allows Abby to have a unique ability to not waste a drop of energy. Being an Introvert is nearly a disease in America, and thank god we caught it! LOL Sometimes not being normal works out for you.

Raspberries and Artichokes back in the diet says a lot. Abby and I are super pleased that they are back on the table. Actually ridiculously pleased! Watching her eat them, swells my heart with pride- all her hard work gave her something back. Funny, I cannot help but think it is a fluke that she is tolerating them, I worry constantly she will eat them and it will start a chain reaction,I need to let that go and relax and just enjoy winning for now. We plan to hang on to that feeling when new things come up like they always do with Abby. If we got the artichokes back we have won at least one tiny battle, which gives us hope against the war.

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