Wednesday, July 23, 2014
For the past 4-5 months Abby has really struggled with catching her breath when she is moving around. It has happened before over the years but this was pretty bad. The pulse ox was showing even down to the high 70's a couple times. Granted, the finger pulse ox isn't the most accurate but accurate enough that we have been concerned. She saw the cardiologist and the heart was just fine, as always. We were considering a visit to a pulmonologist but over the last couple weeks it has definitely improved. We "think" that all these drops when moving around were probably triggered by that last SubQ treatment, I know 4 months, but the only thing that makes any sense. I cannot tell you how badly the SubQ trials messed up her entire body. She still has a bruise on her thigh from the first injection last AUGUST- no kidding. We are still seeing drops to low 90's regularly but that is no big deal, as soon as she sits or lays down it comes right back up so she is saved from having to see yet another Dr.
Latest greatest is a funky rash. More like broken blood vessels.. anywhere her seams on her clothes or if she scratches her skin or anything really, even the pillows pressed against her the wrong way, gets a patch of almost hickey looking marks. Lovely. Blood work has looked fine. So a mystery. Her skin is just that delicate I guess.
Racing heart issues seem to be happening more frequently, but usually not for too long or too high(160 is the highest) just short frequent bouts.. a reaction or a cold can start them off or a degree warmer, or weather changes... She has pretty much had a cold every few days over the last couple months(even she cannot always tell if it is a cold or allergies but a lot of colds). Bothersome she has caught so many despite our efforts to reduce her germ exposure, but very impressive she fights them all off quickly without any concern. I swear chicken soup really does work! :-)
Toenails are almost grown back out again- whew!
She has lost quite a few foods, nothing to panic about, but after holding pretty steady on foods for a long time or actually adding foods this really has me bothered. She has plenty to pick from still and no loss of her good protein foods but I am really hoping she doesn't lose anymore. I always have a strong desire to introduce either new foods or lost foods and am having to fight that urge and stick to what we know she tolerates and I rotate the iffy foods very carefully trying to avoid losing anymore.
Her shrinking feet actually look a bit better, more relaxed. Some massaging and because of her losing her breath she hasn't been using them as much. Apparently they needed a break. She is walking more and more on the outside of her feet and her poor little pinky toes are folded under and getting walked on, but it hasn't slowed her down walking and her gait looks as great as ever. The calluses are really getting out of control on the sides of her feet, her feet are rebelling. :-)
More mild headaches we think are just all allergy related or muscle tension. Her necks been bothering her with pulled muscles and she has TMJ which adds to it. Nothing a nap doesn't fix thankfully.
Her teeth- getting close to repairing them all. She has been too sick to go in for work once or twice over the winter months, and 1 visit she got lockjaw from the local and did not get the work done(though a good cleaning where they could reach.) I think Abby said she has 5 left to restore. So we are thrilled, unfortunately the few teeth she had that seemed free of enamel failure are now showing signs of failure. The local that works the best also avoids immediate reactions but she has delayed reactions. So she is pretty miserable for a week after each visit. We are so pleased with her Dentist. They have been incredibly kind and depending on how Abby is feeling we have had to reschedule appts and they are great with that... they could not be sweeter to Abby either, which of course makes us all happy.
As far as her kidneys? They have been behaving much better. Frankly, I think it is just because we are very aware now what will trigger a reaction that causes the proteinuria. She has had some bad days, but over all the last couple months have been much better as far as her kidneys are concerned. That too we are very happy about. If they do act up(like yesterday and today) they settle down with in a couple days. Today her poor face was so swollen when she woke up. Regardless, we feel a lot more confident that they are benefiting from our efforts to reduce any stressors on her body.
Fatigue plus pain- well those are just part of it. She hasn't hibernated as much but most days are just tiring. Good days she can shower(shower benches are great!), let me wash her hair and get her teeth brushed and body lotion(vitamin D oil) - the other days? She does what she can. That whole spoon theory has gotten easier for her, she knows how to spread her energy. We have had a ton of shows and movies to watch this summer and generally I see smiles and laughing daily- so no complaints, right? She has had many days where she is able to help fold laundry or empty the dishwasher,I always fuss her to do something fun with her energy, but she would rather help out, have I said lately how lucky I am to have daughters that are amazing humans? On the bad days when she needs us to bring her drinks or a plate she always feels bad, I don't think she understands how grateful I am to be able to help her too. I think the days that bother her most are the ones where she is achy(deep "bone" pain) and she isn't able to sleep through it.. 2 hours asleep and 1 or 2 awake and not feeling so great aren't exactly fun. But, they don't last and her body cycles through them.
Since she is home all the time we have gone a little nuts over night clothes.. well beyond nuts I suppose, I really should quit buying them but it has become a hobby. Abby is particularly fond of the vintage hollywood era gowns. So we hunt them down and order and she has overflowing drawers of really fun and comfy night clothes. If you can, you do is our opinion! :-) When it comes to getting to wear Pj's all day and be comfortable it is definitely a cup half full kind of thing and I find it impossible to not encourage the fun.
Life is pretty good right now. We still don't think the Mito is the primary, and still feel that the "reactions" be that they are mast related or something unknown metabolic, are more likely the primary issue. We know it is likely the mito depletion that slows her down and is responsible for a lot of what we see at this point,but we are still very hopeful that if we continue to provide the best, least stressful environment, things can stay good or get better. There are of course a million things I "wish" she could do, but there are so many things she can do that we don't fixate on what she cannot do, heck, my body is fine and there are zillions of things I cannot do and have no desire to do. You are only missing out if you don't enjoy what you already have. I am continually grateful that Derek is able to make a great living which allows me to be home with Abby. I know not many are able to be home with their kids as much as we are able to and I do see it as a huge gift that not only are we able to give her what she wants and needs, but that I enjoy being with my family a whole lot more then starbucks, the gym, etc. :-) I am truly the lucky one. No one knows their children as well as a Mother.