Well the Guilford family has been a busy one. I told you we are up to nine treatments a day. This is how our day goes. Up between 8-830am then vest and albuterol (or "abby") as Eleanor likes to call it. Then we eat breakfast. This has been a struggle. She used to drink a cup of whole milk with Carnation Instant Breakfast and Heavy Cream but now she is completely refusing it. I can get her to drink maybe a 1/4 cup of chocolate milk but that is it. This is very stressful for me as I do not like her not having what she needs and the battles have caused much stress. :( After breakfast I let her run around then we do the TOBI it last about 20 minutes. Next is our first saline nose rinse.
Then we have a break for a while. She gets to play and then we eat lunch and nap time. After nap time she gets to do her vest and "abby" again. Then a snack if she gets up in time. Now she gets to play while I figure out what is for supper. I have not done well cooking of late. There seems to be no time between her treatments and my work for the church next thing I know it is 445 and I have nothing ready to fix.
Robert has been great helping with supper...he calls and says he is bringing something home. This past week the grandparents were all down so it helped me have a break. Anyway, I was rambling, after supper we do her "abby" around 730 then bath and pulmozyme, vest, and TOBI. Final treatment of the day is the saline nose rinse. At this point it is usually 9 and we have a sleepy girl. Funny thing is we put her in bed and she will sometimes talk until 10-1030.
I guess that is why I have not found time to update you. But I wanted to get on this morning to let you know I have not forgotten about the blog. Robert and I are tag teaming church...I went last week and he went today as he also teaches Sunday School.
I have a few more you would not say to "non-CF" child....
Keep running it will make you cough and feel better.
Finish up your ice cream shake so you can have some strawberries.
That was a good cough.
Eat two more bites of your cookies and you can get down.
More cheese dip then you can have some tomatoes (or "mamatoes" as she calls them)
Ready to do the "abby"...
Time for the TOBI...
Want to spray the nose (then she goes and sits in her pink chair and waits for her saline rinse)
Daddy I teted...to which Robert responds Thanks for sharing eleanor.
She is as resilient as ever and I am glad as there are days when I am certainly ready to throw in the towel.
We have a doctor's appt on Monday just a normal well check with her ped doctor. So I will let you know how that goes.
Pray for her cough, our food battles and she has a smooth appointment tomorrow...
His Grace is Sufficient at all times for me,
Thank you Lord,