We just got back from our day long journey to Pensacola to see the CF doctor. It is always an adventure when we go to Pensacola. Especially now that we have Thomas, who is now five months, to go along for a whole day confined to either a car seat or a stroller. Today Grami and Pawpaw went with us and helped make the trip so much better!
Some background: Eleanor has had a on and off stuffy nose and just in the last week a crappy sounding cough. She also has started having a hard time dealing with certain things...mostly because lack of sleep and today we found out another reason.
So the great news is that we gained 1.3 pounds since December. I think that I can speak for Robert and I both when I say, "YEAH!!!!" We have worked extra hard to get some weight on her. She knows the routine when we check in and she gets her vitals done. The Respiratory tech tried to get her to blow in the macine that will measure her PFTs but she said she was scared. I knew something was off when she said that. So one of my prayer request is to pray that at our next visit she steps up and blows in the machine. I know she can do it! Last time she did very good with getting her culture and this time she freaked out a little bit but we did get it done.
She then saw the doctor and we talked about several things. One thing being that the flu is going around Hartford so I asked about going to church. You see we do not live in a bubble with Eleanor but we also try to make sure to keep her out of "for sure" bad situations. I hope that makes sense. She has her flu shot but since the flu is prevelant the doctor said we might take a break for a week or two from church to let it run its course. I hate this because she loves going, but I know it is best for her right now.
Another thing we talked about was Eleanor's cough. It is a yucky cough and after listening to her the doctor said she heard the dreaded crackling in the lungs. So we are on an extra one or two vest treatments with her xopenex. Doc went ahead and prescribed Cipro for 21 days. We hope this clears the crud out!! So pray she can maintain a good attitude with all of the extra stuff. She has done good since her other new treatments we added last time, but lately she has been a bit off in her attitude. Pray that this medicine helps clear her lungs and helps get her back to the peppy Eleanor we know.
We go back April 19th as a follow up appointment to see how she is doing. We appreciate all of our prayer warriors.
We get our culture back on Monday...will try to update that next week.
Coleen
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