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.

Sunday, May 27, 2012

A day in Abby's life.




Sunday-

Depending on the night before she will usually come out for a drink around 5-8am. If it is a good morning, she will snuggle up in her favorite chair and drink her tea and maybe even want some food. On a bad morning, she drinks some apple juice and goes right back to bed. On a really bad day, she has to be woken up and I make her get a drink.

Either good or bad day, she usually lays back down at 10-11am- if was a bad one, she has been asleep since apple juice, on a good day, she may lay in her bed and watch movies and snooze off and on.

If it is good day, she comes out mid afternoon and finds some munchies.. lately one of her power muffins with protein powder and blueberries.. she will drink some water through out the afternoon. On a really good day, by mid afternoon she is up to moving around more. she will chatter with me and watch something on tivo with me.. If I am cooking, she will help get ingredients.. and pace the kitchen for awhile. On a bad day, after munching and fluid she back into bed. On a really bad day she won't wake up at all in the afternoon.

Evenings- on a good day, she will hang out in her favorite chair, and chatter with everyone. After a couple hours though even if she still feels good she usually will sit in bed where she is most comfy and either her sissy hangs with her or she does her online communities..Sometimes she has really good evenings and I can hear her and sister giggling and some internet thing or movie well into the night.. On a bad day, she will come out to quickly eat and pound down fluid and go back to bed. On a really bad day she will still not have woken up.

Some nights she is downright energetic! She will go back and forth between her favorite chair in the living room, pacing the kitchen, and her room. Usually, this is when she showers. She will try to put up some of her clothes if she is really bouncy.

Now if she catches a cold, is exposed or eats something that disagrees with her, or had to go to the Dr. the entire schedule changes to include a lot more sleep. IF she manages to have a few good days in a row, she will make sure to grab a shower friday or Saturday and she will go to the Movies on Sunday- it is the one outing that she will push herself to go to. No wheelchair needed and she can get pretty comfy in the movie theater chairs- it still wears her out though, and it might be a couple days of lots of sleep to catch back up. We are very worried that her corn allergy is getting more and more sensitive- I made popcorn for Derek the other night and in the back of the house, just that much in the air got to her- we are very worried the Movies may become a major challenge. Every once in awhile, she likes to just get out for a ride- she can get reasonably comfy in the car or truck and 30 minutes to 1 hour drives seem to hit the spot for her.


She rarely goes outside- if she gets a bug bite it makes her miserable. If she gets too hot or cold, it throws her off terribly. On a good morning or afternoon she may sit outside with me for 5 minutes if I nag her to get some fresh air. So far we haven't found a sunscreen that her skin tolerates anyway..

Shopping even in her wheelchair is rarely worth it to her anymore.

Even during the years when she was at her best and able to handle a school week her energy was limited. I dressed her until she was 7 or 8. I would have to start waking her up at least 2 hours and usually 3 before school. After school she 5 out of 10 times needed a nap or rest on the couch to make it through dinner. For years she did not sleep through the night. Now she will sleep for days and then go days where all she can do is catnap off and on. She hates swimming. She says the water takes her limited control of her body away and even if that is relaxing, she says the whole time she is in the water she dreads getting out. She will have to sit down the second she gets out-her body feels absolutely leaded by gravity. She sits in a chair for at least half an hour to just muster the energy to go change and crawl into a favorite place to rest. We have talked about aqua therapy, but she said just the thought of having to get into the car to get there is exhausting. During her good years she was able to have a playdate now and then, but only if I knew she had a weekend where she could stay in her PJ's and just lounge in bed.. even then the following week usually was tiring and she often ended up with a cold, but it was worth it and we managed.

Weird things can set her back- yesterday I wanted to show her what I had bought for her sissy's birthday, when I opened a bag she instantly lost her breath- apparently sizing is a big trigger right now- we just never know- next month it might not bother her.

Since removing the corn, soy, miralax,gluten, she has had a lot more "good" days. The overall body pain has lessened.

The last time Abby had a "normal,terrific, amazing day" where the stars were aligned was over a year ago now. Halloween was amazing- she has always wanted us to build a haunted house, and so Derek and I did. She stubbornly stood for hours to hand out candy and enjoy the evening- she paid a high,high price for that, but it will be a night we all hold dear for the rest of our lives.

We don't travel. We don't visit. We don't entertain.

She will catch every cold that comes into our house. I stay home during the week and save my errands for the weekend. We are her entire world- for better or worse. Thankfully, I adore my daughters and enjoy them so we are all very content with one another.

If we do entertain we prepare weeks in advance- we are all excited beyond belief that my two favorite Uncles are coming to visit! They will stay in a hotel and you just could not ask for more amazing people to call family- plus, they come from the side of family where we have a lot of family members with significant chronic illnesses(genetics I am sure)so they totally "get" Abby's limitations- and with great grace work around them. Plus, my entire family even spread across the country decided to take off the weight this year, Uncle in AZ, Uncle and his entire family in WA, even my brother in Florida- what joy it has been to reach out and share that journey together. IT is going to be the great revel next month when we can see and congratulate each other on our weight loss successes! It will also be nice since they are watching their food intake that we won't be focused on eating at every great restaurant in Houston! That makes it much easier for Abby to enjoy them when they are here since she won't feel left out food wise.

Oh and how food plays havoc with her. Not just what she eats,but how much. She on a good day handles up to 900-1000 calories but average she does best at 800-900-more then that triggers malabsorption which triggers a terrible week. More then 30 grams of protein,she gets sick,more then 10 grams of fat a day she gets sick, she barely tolerates fiber(quinoa experiment did not go well) Everything she eats has to be finely balanced to try to avoid allergies, to try to feed her body what it needs without upsetting the very careful balance. As we struggle to met her nutrition needs it can get so frustrating. Seems like if we improve one level she drops in another..

There are times when I look at how little she is able to do anymore and it truly alarms me. But then I look at the fact that she is able to walk, no feeding tube, no oxygen and it is because we are so defensive of how her energy is used I refuse to steal her energy with activities that take more then what they give. We refuse to haul her to therapies, appointments, etc- all they do is cause her extremely limited energy to be used and sets off another step toward progression. Thankfully, we are introverts for the most part, and Sara and Abby are truly brilliant, we have all put our thinking energy to creative problem solving avoiding feeling trapped or alienated. We are the lucky ones. As we have seen some improvements this last 8 weeks I can barely contain my dreams. You know how you buy a lotto ticket for the big couple million ? And all night you say to yourself and dream, " If I win I am going to buy this and that.. and help so and so with and that.." Well, we watch the minute improvements and say to ourselves" if this low histamine allergen free thing works with Abby, we can take her shopping, to the book store.. a Dr. appt won't kill her anymore.."


We truly understand appreciating the little things! Abby having a good day is better and more exciting and satisfying then even the day I gave birth to her.. better then the day I got married..

Each Mito patient is VERY different. Some can handle school, Dr. appts, social visits, no problem- if they have other issues they are not impacted by zipping about every day. Some are more restricted then Abby in how they use their energy. It is horrible and frustrating disease, because all the tools I have learned to help Abby may not help anyone else. It is difficult to find another patient that has similar challenges and choses the same methods to cope. Even in a room of a 1000 mito patients, you might feel lonely. In this journey family support trumps anything in making the best of it.

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