We have had a relatively uneventful few days. I can feel things slowly trying to get back to normal. More focus on work, church, housework, the farm, and less on breathing. Lila is doing much better. She is still up at night some, and although she's been able to play outside, she still can't really run. We don't know if that is because of her breathing or joint problems from the steroids. She still complains that her throat and upper chest hurt often.
I am so glad that we have come out of this bad, weeks long episode. I was starting to be afraid that she just wasn't going to get better. It is a concern of the doctors that it lasted so long - her overall trend has definitely been worsening. For now, she is doing better. Tired, but much improved. Which, I guess, describes how I feel too.
We are making plans to leave next week for NY to teach our classes (Ben teaching juggling, and me teaching two, maybe three, sections of a cheesemaking class) and when we return we will only have four days until we leave for Denver. We will be gone four and a half out of the next six weeks. It feels so huge.
As far as Denver, it is looking more like Ben might be staying with us the whole time. We received word that they might do surgery while we are there to see better how her lungs are doing. We both want him there for that, and we won't know when that will happen until we get there. Over $10,000 has generously and amazingly been donated. We will not be certain of the final cost until we get there; they still say at least $20,000 - if we are a little short, they will let us make payments. We have also received money for the trip which has been very wonderful as we weren't sure how we would afford it. And some kind, thoughtful anonymous person sent us gift certificates to be used for the girls for some little treats. Our church has been very supportive of the time that Ben will have to be away with all of this. We have truly felt blessed and lifted up by love.
For now, we will try and be organized and energized and prepare as best we can for this next time of being gone. While I can not overstate my gratitude, and I hope so much for answers that will end this all for Lila, I am dreading this trip. It will be difficult for Lila, and that is always tough to see, even when we know it is to help. I will keep updating frequently. Thanks for checking in and checking on us.
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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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