Thursday, July 28, 2011

A New Kind of Freedom

We're happy to be home. It's amazing how Reya's spirits have been lifted. This is a new kind of freedom with many limitations, but we'll take it. We have a lot of 'guidelines' to adhere to and to help us to get through these next 100 days as best we can. The most obvious is she will continue to be a 'masked' girl for much of her time out and about or when having visitors outside of 'the pack'. 'OCD' is our new level of handwashing and sanitizing. It's just best that way without the anxiety of course. You can never wash or sanitize enough. Reya is now able to eat fruits that can be peeled. The one thing she wanted the most while on the Unit was grapes. Peeled grapes are you kidding me? I tried hard to dissuade that request with other yummy fruit offerings, but there is nothing like a Grandmother's love. Nene stood patiently at the sink and peeled several grapes for her girl to enjoy. Ok, so the visual is obviously half the enjoyment. She ate a few, but couldn't get past they fact that they 'looked' different and turned brown quickly. The same thing happened when the children had plums the other day and I had to peel hers. She took a few bites and aborted the mission. She can still have veggies, very well washed and cooked, cooked and double cooked...yum well done veggies. Leftovers beyond one day will not make the cut. No aged cheeses, deli sliced cheeses or meats. Visitors are limited and we need to avoid the woods and crowded places. Oh and staying out of heat and sun are also 'Top Ten'. We 'can' go out to a store, but must make this trip when there are 'less people' there. It's also advised her time outside be somewhere near 7pm-8pm. Imagine the challenge in that with three other kids, activities and just life. I wanted to run out yesterday just to grab a few things, but timing got the best of me. We were all set to go and then I realized it was nearing the lunch hour where countless people would be out. So I said we'll wait a few hours, but then a nap foiled the plan. Fortunately I have such awesome family and friends who are willing to run errands and pick up things that we need.

We also had plans to have our carpet upstairs replaced before Mireya returned home. Household carpets are known breeding grounds for everything we need to eliminate in our lives germs, bacteria, fungus and mold. Our plans were sidelined with Reya's health bouncing back at such a incredible rate (that of which we are thankful for). So pulling up the carpet and having her in that environment right now would be more harmful than the necessary end result. So 'ideally' we'll keep her in the area of the house with hardwood as much as possible and as Dr. Godder says 'surrounded by plastic' that can be wiped down and then of course she sleep and rest in her room. We've had the carpets cleaned which does not eliminate mold, but it will put a small dent in rate of growth of any existing mold. A mold test was conducted on our house which gave us some insight on potential issues and levels inside the house in comparison to the levels outside. The levels came back good, but there were recommendations for a couple of things that are considerations aligned with initiatives we already had dealing with air flow and purification. Plants are another area of contention. I don't have a green thumb so that doesn't have the same level of impact as some of the other items.

We've been in good rotation with our medications both orally and via the line. It takes a lot of focus to remain on task with giving several medications with different doses, three time a day. Not to mention cleaning all those little vials. Her IV medication takes about 3 hours to administer. We're free but pretty much need to remain isolated as best we can from potential health threats and issues. Our home remains our sanctuary and we'll creatively figure out how to allow the other kids to be the kids they long to be within the scope of their sister's limitations. Playdates are great, but it's hard because Mireya 'feels' excluded, so I'm having to come up with some cool and special things 'we' can do while all that other kid fun is going on. It would be nice to find a time and place that she and I can go to. Trust me I'm a resourceful chick so I'll figure out something. But if you have an idea or suggestion, let me know. It's taken a lot more to do all the things we need to, simply because we are all now back in the house and there's so much going on and to coordinate. We'll be pulling out those lists of people who said I can do this or I'm willing to do that and pulling numbers, "Now Being Blessed By #21". God is faithful and Reya's health is continuing to improve. Continue to keep her and our family lifted in prayer as we get acclamatedd and comfortable with where we now are in the process, Day + 25.

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