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So Casey is finally being discharged today. We have a lot of thihngs to follow up on though. PT, OT, speech, auditory, neuro, metabolic, infectious disease, and the list goes on. lol... I am happy to be able to say her cf dr has now classified her as having cftr Metabolic Disorder instead of cf...

So we have been in the hospital with casey for the last few days with no real idea of what is going on or when we are going to be able to take her home, and somehow thats not the worst of it these days. Somehow my aunt(whom we currently live with) finds a way to make life worse, to make it seem...

Over the past weekend I noticed my daughter was coughing, just a weird little cough like she had a tickle in the back of her throat. I called her doctor that I wasnt too concerned about it. Then around 5 pm on monday she started acting really lethargic. I though she was just hot and tired...

I applied for SSI for my daughter because several social workers told me I should. She was denied and the SSA gave me the specifics on who qualifies and why my daughter does not. Several people have told me I should make an appeal, and/or hire a lawyer to help me make an appeal. I have also...

When my daughter was first diagnosed with CF they put her on creon enzymes for pancreatic insufficiency. They attempted to do a sweat test with no luck. She started growing and is doing a lot better. She has doubled her weight at birth, at least. They redid the sweat test upon my request. The...

Dealing with a diagnosis like cf is hard enough. I have been living in Texas since february and the only job I have been able to find is watching a little boy 50+ hours a week for 140 dollars a week. I am going nuts. My husband has not been able to find work. And we need to be out of our current...

I need someone to break this down so I can understand it. My daughter has cultured staphylococcus aureus. She has a cold right now so they are putting her on antibiotics for the next ten days. If I hadnt called them about her cold they werent even going to tell me about the throat culture. Im...

When my daughter was diagnosed with cf her doctor said if she got sick... even a cold or a fever of 100.4 to take her to the er. She has been coughing a lot more than normal, this morning i woke up at 5 because she was fussing so I cleared out her nose with the baby nose thingy. there was a lot...

I forgot to give my daughter her creon until halfway through her bottle. this is the first time in 6 weeks of giving her the medication that ive forgotten. I know that happens sometimes, and i just want to know if anything really bad will happen as a result of feeding her 2 ounces without the...

Even before my daughter was diagnosed with CF people told me I needed to be more careful. That I needed to protect her from getting sick. I took her everywhere with me. from the day we left the hospital when she was first born. She has been to so many places and she has yet to get sick. I wasnt...

My name is Elin Parkinson. I am a 20 year old mom of a baby girl who was born 12/30/2009. Her name is Casey. I have been raising her alone because strange circumstances have not allowed for her father and I to be together. Casey and I moved from California to DFW, Texas so that I could work and...