Waiting

This is what it looked like to leave Meaghan at home for the
day.  I counted, measured and labeled the medicines she
would need to take while I was away.  What you see is why
it is so hard for me to go anywhere without her.  By the way,
this does not show the two refrigerated medicines she takes
every day.  Or the twice a day vest therapy.

I have a little catching up to do I guess.  So much has been going on and at the same time it's like nothing at all.  The thing I want to know and everyone asks me about, I still have to wait for.  Meaghan has an appointment at the CF Clinic at Johns Hopkins on Wednesday September 12th.  At that appointment they will do a throat culture to determine if the treatment she was receiving to fight the psuedomonas infection was successful.  Fingers crossed.  We are trying once again to bring her overnight feeds back to her pre-infection concentration so we can put more meat on that tiny frame.  Right now she battles to keep 39 pounds popping up on the scale.  Which helps lead me to the next picture on the left.  That is a celebration in our house, two fold.  One, Meaghan tried scrambled eggs for the first time in years!  Second that is all she left of the TWO eggs

The start of a good eating day for Meaghan

I scrambled for her.  I wasn't sure she'd eat them at all but she happily scooped them up one bite after the other.  Many of you have heard me talk about nutrition for Meaghan so you know what a victory this was.  I must say though, that Meaghan's tastes have steered her to proteins more and more these days.  She is eating eggs once a day and chicken nuggets, from the freezer, almost once a day and she LOVES steak and pork for dinner. All thaose meats combined with the freedom from Bactrim (the oral antibiotic) I am looking forward to seeing her weight jump up.  As I write and think about it I find myself trying to not get too excited.  What always seems to happen is I feel great about how things are going and that silent speeding train from the long dark tunnel hits me all over again.  That is all part of what we live every day.  We do a lot of waiting and we try to look forward to tomorrow, but not too much.

   

It's not just the picture, Jonathan is THAT BIG

So with all of that said, there are a few things we've done that help remind us of the good times that are out there to be had still.  We went to the HoCo Fair, that was a blast for everyone.  I rode rides with Jimmy and the little kids that I didn't ride when I was a kid myself.  We went to Dutch Wonderland.  That was another GREAT day where I rode "scary" rides.  We closed the park!  We have begun regularly attending church again.  Everyone has their own thing going on there and it is a welcoming, friendly place for all.  Most recently we went to the National Zoo in DC.  It was a better day for the kids than for me or Jay but they are why we went. Tomorrow I told Meaghan I would take them to the aquarium in Balto one more time before school starts.  I am praying really hard for a good fall.  Meaghan is going to take a Tap and Ballet class at a nearby dance school, Jonathan is taking Tee-ball lessons, Jimmy has travel baseball (STILL :)) AND flag football.  I'm joining a womens small group for some much needed "me time".  There is so much to look forward to in the Jaecksch home.

Thank you all.  Keep us in your prayers, especially for good news on Sept. 12th.  We love you all.