Lila and I both seem to be feeling better today. A wonderful friend and neighbor and all around terrific woman came yesterday and kidnapped my laundry pile and Samantha. I was too tired and too humbled and too grateful to protest. As soon as she left, Lila and I got into bed and took a two and a half hour nap. It helped us both.
Lila slept better last night too - only waking once for a breathing treatment. And today we went blueberry picking at a farm about two miles from our house. Lila was outside for several hours. She struggled a bit with wanting to run around and not being able to, but she was fairly active and her breathing stayed all right. I think we are really on the upswing of this longest and worst flare up. I could use a few weeks of normal before the big trip.
Lila (or maybe I should write Lilac since she abruptly announced tonight that she wants to be called that name always instead) fell asleep early. She was worn out, I'm sure, from being outside and still doing the work of recovering. But these are small steps in the right direction and they feel good.
It is hard to be on a roller coaster ride of better and worse and better and worse, but for the time being, I'm glad to be on the better side of things. I hope she keeps taking these small steps everyday until she feels normal again.
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Lila's feeling spunky
A blog to let everyone know how Lila is doing as well as my ruminations on the ways that her illness impacts our life.
The Journey So Far
Lilac started to get sick in November of 2007 when she was one year old. She began to have trouble breathing and to get tired very easily. The doctors diagnosed her with asthma and started her on many asthma meds. She kept getting sick. We spent Christmas of 2007 in the hospital which was lonely and miserable.
Lila went in for allergy testing soon after that, and tested negative but with a small sensitivity to mold. We discovered that there was mold in the house we had just moved into. We immediately moved out, leaving all our possessions behind, to stay in a church members house. Lila continued to be sick and in the hospital every four weeks or so. We moved into a new house in June of 2008 and got rid of all our furniture, stuffed animals, and appliances which still had mold contamination. It was a tough time.
Lila continued to have trouble. We heard many, many theories - that she might have a fungal infection from the mold, that the mold had made her lungs hyper-sensitive, the she had severe allergies. Finally we were sent to a pediatric pulmonologist. He did more tests. We discovered that her lung capacity was poor, much poorer than it should be, even when she was healthy. We also found out that she has severe reflux, which likely makes her breathing worse when she aspirates stomach acid. She went on more medication. We saw a brief improvement.
Then in early 2009 her breathing started to get worse again. She has had to be in the hospital every three to four weeks since January, with more ER visits in between. She had her first ICU stay in May of 2009. It took her a long time to bounce back.
Lila went in for allergy testing soon after that, and tested negative but with a small sensitivity to mold. We discovered that there was mold in the house we had just moved into. We immediately moved out, leaving all our possessions behind, to stay in a church members house. Lila continued to be sick and in the hospital every four weeks or so. We moved into a new house in June of 2008 and got rid of all our furniture, stuffed animals, and appliances which still had mold contamination. It was a tough time.
Lila continued to have trouble. We heard many, many theories - that she might have a fungal infection from the mold, that the mold had made her lungs hyper-sensitive, the she had severe allergies. Finally we were sent to a pediatric pulmonologist. He did more tests. We discovered that her lung capacity was poor, much poorer than it should be, even when she was healthy. We also found out that she has severe reflux, which likely makes her breathing worse when she aspirates stomach acid. She went on more medication. We saw a brief improvement.
Then in early 2009 her breathing started to get worse again. She has had to be in the hospital every three to four weeks since January, with more ER visits in between. She had her first ICU stay in May of 2009. It took her a long time to bounce back.
This was her life for years - ups and downs, new medicines, new theories, better and then worse and more time in a hospital than any kid should have.
And still we walk on...
About Me
Lila's feeling spunky
Growing and glorious
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