Wednesday, July 30, 2008

Zoe cultured Pseudomonas for the first time

The dreaded call came yesterday...Zoe has cultured PA for the first time. I got off the phone and cried. Then I got pissed...pissed at cf.

I guess what really gets you is...your floating along thinking, wow, it has been 7 months since she has been in the hospital, we are doing good! Then SLAP!! right in the face.

Yeah, sure she has been on orals several times since then, Bactrim a few times, Keflex, but I thought over all, we were doing good.

I guess another thing is, you do everything that is preventative, I mean EVERYTHING, we never miss treatments, never. But the nature of the disease still shines through and puts you back into your place. Ugghhh.

So, we picked up her Cipro (an oral antibiotic) and Tobi (an inhaled nebulized antibiotic~it takes 30 minutes to nebulize) today...will start tonight. Zoe asked me, "Is that (speaking of the Tobi~it smells and tastes bad) the treatment that I don't like??". To which I responded, "Yes, baby, it is, I'm sorry." She sais, "Ohhhhh, I don't like that medicine...."

Onward we march..........

Saturday, July 19, 2008

I believe I am getting OLD!

I think the realization of this hit me today, standing on the beach at 9:30 a.m., tears streaming down my face, watching my first child get married. He will be 21 next month. Isn't he still my baby boy????? Where does time go??? First child, meaning, first one to get married. My oldest is 24 (hoping she doesn't get married for a looooonnnngggg time yet).

They had a quiet, beautiful ceremony. My neighbors know that we are moving, having financial issues, etc....they threw a "preception" for them last night at their house next door. Food, cake, beer, wine, dance floor with dj and all. We feel so blessed. I find it amazing how God will work in mysterious ways like this. We didn't even mention to them that we couldn't do anything for my son and his future bride. They asked. Then they did. Amazing. Just like Christmas time when we needed it. I stand in awe.

I am happy for them. Happy for us. Sad for losing my son (to another woman). LOL!

We are moving August 1st to the great house we found in St. Mary''s. It will take about 40 minutes off of Scott's drive one way and about $900.00 off our mortgage a month! Hopefully those things will help relieve some stress. Zoe's clinic and hospital will take me about twice as long to get to (40 min. compared to 20), but I don't have to drive it everyday like Scott does. Plus it is all interstate, not bad. St. Mary's is a historic town, quiet, right on the marsh. There is a state park less than a 1/2 mile from our house. The swim team there is year round, instead of the one the kids have been in here, it is just 3 months long. The kids are pretty excited about that! I think it will be a good change. Jacksonville has a very high crime rate. St. Mary's doesn't.

Zoe is doing well. After the wedding today, we stayed at the beach for a couple of hours. We haven't taken the kids to the beach at all this year, ugghh. Zoe was excited. UNTIL, her and I got knocked over by 2 huge waves. I held onto her, but we went under. She was not happy. She wouldn't go in the water after that. She finished that round of Keflex, just has a few coughs here and there, so no antibiotics right now.

Well, we had Blockbuster by mail send us Jack and Jill vs the World, so, Scott and I are going to go cuddle up on our bed, have some pizza, a glass of wine and watch it. I hope I'm not too dissapointed in the movie, but I do tend to want things to be realistic when it comes to cf, so, we will see.

Thank you for reading, take care all....good night,