I was reading the blog of another mother with a sick child and feeling incredibly fortunate. I'm glad to be feeling that way because that feeling comes so seldom. Most of the time I feel cranky and helpless and pitiful. And then I read about a child much sicker than mine, and marvel at the grace the mother exhibits. Gratitude is something that I am trying much harder to hold on to.
Lila is asleep for the night. Poor, tired baby fell asleep sitting up at 5:00. She is so exhausted. Fighting to breathe is hard work. She has been up for hours every night coughing, fighting to breathe, and getting breathing treatments. Her little body is just worn out.
It hurts me to see it. I hurt for her and the ways that she is sick and suffering. I hurt for Samantha and the ways that she feels like she is not as important as Lila. It just hurts. I am praying so hard that the doctors are right and Denver will give us answers. And I am praying so hard that we will be able to get there.
I keep thinking about hope. In some ways, I think, despair and acceptance hurt less. A doctor told me, not three weeks ago, that this would just be life for Lila. It was horrible to hear but I felt like I could manage the news. What choice did I have? Now she's worse - and they say if we can get her to the specialists in Denver we might leave this all behind and help her to heal. I am overjoyed and yet I feel like I am walking on the edge of a knife. This hope is so sharp, I'm afraid it will slip and leave me bleeding.
But for now, she is sleeping, and her breathing is labored. Even in her sleep, breathing is work. Rest well, little one.
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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...
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