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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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- Today she had CT of her sinuses, a CT of her lungs...
- We have also learned new things. New ideas about h...
- I'm wishing for a computer. It's hard to say all I...
- I already take it back. More details later.
- We have been at the hospital for 20 minutes and so...
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- The GOOD, The BAD, and The UGLY
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About Me
Lila's feeling spunky
Growing and glorious
Thank you, dear Lord for this safe passage. I do hope this gives some answers for treatments. I can't imagine how scary this was for you & Ben. Yes, you can't protect them all the time--your Head learns this but you know what--your Heart never does. You are doing so good--many parents would have lost it long before now and you are still keeping yor girls first. It IS okay to have tears, fears, anger etc. Otherwise you will blow. Boiling emotions are like a pot with a lid and too much steam-you have to let a little bit out now and then or risk a complete explosion. This from the aunt who used to ride down Roosevelt Blvd. at 1:00am and scream out the window all the way home so I could hold it together for Jeff & Jody after their dad underwent chemo. Crying in the shower and pillow are other good forms. The frustrations are so difficult. Had a friend who said he used to "name every blade of grass" and "cut off their heads with the lawnmower" when he was undergoing treatments and another beat up her pillow. So see, we all have these feelings when there is an illness etc that WE can't control. Have to keep rememberin "let go & let God" but it's a lot harder to do than say. Love from all of us in GCS.
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