3 month check up

It was a timely appointment because Anna started to cough a bit about five days ago.  Once again my heart sank though I know I should be grateful that we had such a healthy summer. ( I used to love when the weather would turn cooler, now I wonder if I will ever view the coming of fall the same way as I once did.)  We monitored her coughs, gave her an antihistamine, took her breathing rate,and I prayed really hard that it would not turn into a chest cold. The cough has gotten no worse and no better. The doctor said her lungs were clear so now we wait and see what happens...

On another note, I talked to the nutritionist and the CF nurse at length about Anna's poorly balanced diet. Although she has gained sufficient weight on her all carb and dairy diet, she is not learning to eat from the other food groups. This has been worrisome to me for some time but I have been reluctant to push because I just want her to eat something. Well, it is time to play hard ball. It is time to train her to eat what is offered and that is going to mean some hungry days ahead for my beautiful little blondie. Please pray I can follow through with the suggestions given to me.

We await the result of her throat culture....

Anna's Summer

Other than a long bout of stomach flu that kept the family in the house for most of July, we've had a healthful summer. Anna was the last to get the stomach flu and recovered the fastest. I was disappointed that the Lord did not see it fit to spare her the stomach flu but I was grateful for the quick recovery- it only lasted one night for her.  Oh, and there was that cold that followed the stomach flu but Anna had it only mildly and with no antibiotics.

I'm a bit concerned about her sudden love of a certain dirt spot on the side of the house.... one that her brothers frequent. We took out our sandbox last spring and I passed up opportunities to go to the beach- trying to avoid the "CF germs", but there she is frolicking in the dirt and having a grand time of it. What can I do? Wash her hands and worry- I am very good at both of those things.

Other things that Anna is up to:

- Two of her favorite phrases are, "What's dis?" or "What's dat?"- very curious about the world.

- Her top pick is still "Elmo" for keeping her attention during the last part of therapy.

- She loves to go down in the basement and rock out to the oldies while jumping on the
  mini-trampoline.

- She frequently requests "crayons". She got a hold of a marker today and tried it on the
  upholstered chair and received a "talking to" and a time-out, neither of which she enjoyed
  very much.

- She has been described as a "delight" by an unbiased grandparent.

- She has decided to start her "Terrible Twos" a little early by loudly yelling "no" and otherwise
  trying to assert her way.  But mostly she is agreeable and responds to suggestions with a cute
  resounding, "OK!"

- Claims her dinner is over by announcing, "Anna full" and pushing her plate away. Of course,
  she has hardly eaten anything, but nothing I can do or say will get her to eat more.

- If loudness is an indication of lung health, she must be doing ok.

Throat Culture Results

The throat culture did not come back as I had hoped. It showed that Anna had a slightly elevated amount of the same staph that had been detected in her throat culture in January. The nurse explained that the April throat culture either didn't pick it up (apparently throat cultures are not an exact science) or that it is a new crop of staph.  What was surprising though is that the doctor did not recommend putting her on an antibiotic at this time.  He said that since she is not showing any signs of coughing or breathing issues that we could just keep an eye on her and let them know if she developed any symptoms. I appreciate his willingness to see if her body can deal with it on its own and not to medicate her unnecessarily.

On another note, her weight gain was fine, even slightly above her normal curve on the chart. Apparently she can survive on dairy and carbs alone. Although her future good health will depend on things like a balanced diet. (I just learned about a CF recipe web site.) We will keep offering the food and hoping she will eat it...someday.

Update from Anna's Dad

Just a little thank you to everyone for following this blog and keeping Anna in your thoughts and prayers!

Please check out the website and blog of my new practice in Wheaton, IL.

Steve

Check up

Anna had a three month check up with the CF team yesterday. She is doing well and showing "no signs of lung disease" as the doctor put it. We will continue with once a day therapy as a preventative and maintenance.  My biggest concern was her eating habits and whether she was gaining sufficient weight. Despite the fact that she only eats dairy and carbs - she gained the weight to keep her on track. We were told to keep introducing new foods or re-introducing those that she has rejected in the past in hopes she will try them and like them someday....  We will have to wait a week for the results of the throat culture which will indicate whether she has picked up the "CF germs" that I so desperately want to avoid.

Speaking of "CF germs", today we went on a walk around a beautiful pond. No longer content to stay in a stroller, she wanted to throw rocks into the water. I wanted to tell her "no" because I didn't want her to touch the wet soil around the lake. But how can I not let her throw stones when the rest of her siblings are?  I resolved to wash her hands asap, but before I could she threw a fit (as I wanted to continue the walk and she wanted to continue throwing stones) and as she did she stuck both of her hands into her mouth! I was alarmed and angry, and desperate, and crushed, and fearful all at the same time.  She cried the rest of the way around the lake path- and I felt like I wanted to as well.

Yeah!

I finally did it. I picked up the phone and dialed the CF nurse. I wanted to ask if we could take Anna down to one therapy session a day- since I have not noticed her coughing.  I left a message and a couple hours later the nurse called back.  The nurse said, "Great and congratulations." And that was that!  I felt so relieved. I felt like celebrating!

P.S. As I hung up the phone - Anna coughed! But she still seems fine!

Doing well

When I announce to Anna that it is "time for therapy" she replies most days with, "Yeah!" Often that is followed by running to her place on the couch and attempting to scramble up on her own. Then I ask her if she wants books or puzzles, or perhaps we will play with a toy together for the first 20 minutes of her breathing treatment. All other children are on their own during that time and I try to give her all of my attention. She loves to read books. We also do finger plays and songs. When the breathing treatment is over, it is time for the vest therapy- and with that comes a video. (I often wonder if that isn't where the initial "yeah!" comes from when I tell her it is time for therapy-a.k.a "time for a video" in her little mind!) She sits alone sometimes, but more often Luke is right there by her and if they can manage it, the bigger kids watch the "made for toddler" video as well! When the timer goes off on the vest 20 minutes later (now a full 50 minutes of therapy) she again says, "Yeah!" I unhook her from the vest and she glady watches the end of the video.  We repeat this entire process in the afternoon or early evening for a 30 minute therapy session.

She has been doing so well that I have been considering contacting the doctor to see if she can go back down to one therapy session a day. But then as soon as I think I am actually going to contact him, I hear her cough a little.  And then I doubt and pause and don't make the phone call after all...