Well, the call came yesterday. Zoe's doc. Kathyrn.
Mel fortold the truth of CF. No matter how much antibiotics you put through someones body...oral...inhaled...i.v.'s...they can STILL culture bacteria.
Amazingly enough, Zoe's culture from last week came back with a brand new (to us anyways) bacteria....Enterobacter Cloacae. Sensitive to Tobi...among some other drugs. Since she is just now starting week 2 of a Tobi round, we decided to not "rock" the boat and continue with her treatment plan that she is currently doing.
When I was talking to Kathryn today, she asked how she was doing? "Good" no coughing, very little throat clearing...."Good", "Let's don't change anything, sounds like what we are doing is working." I agreed. Of course late this afternoon, I notice that Zoe has coughed a bit. I asked her..."What was that?? Are you coughing??" She sais, "Yes, Mommy, it's ok, It's just a cough." Ugggh. Hopefully just a freak evening. I guess I just need to start expecting the unexpected with CF.
My almost 17 year old son, Caleb is preparing for the Navy. Not just the Navy either. He wants to be a Seal. He is running everyday in full clothes, combat boots, etc....running his 3 miles in just under 20 minutes today. He actually turns 17 on October 14. I can legally sign him over to join then. He is ready. I really hope it all works out for him. I personally think it is perfect for his personality.
I had another blessing on Friday. I think God holds me in His arms often. I feel blessed and cursed all in the same week. Anyways...to the blessing....the kids and myself stuffed envelopes at the CFF office on Friday. We got there early, hooked Zoe up for her treatments, the kids started stuffing envelopes. One of the ladies that works there, Linda, asked if she could ge the kids doughnuts. So, I wanted coffee, I rode with her to get the kids dougnuts and us coffee. On the way, Zoe's doc calls. We discuss Zoe's treatment plan, then discuss the expense of the Tobi that I picked up on Monday. My 30 day supply, co-pay is $100.00. I didn't have the $$ that day, they said they would bill me. I asked Kathyrn if Zoe was going to be doing the 28 on 28 off, we should do the mail order, then we could get 90 days for the price of 30. She would let me know...in the mean time send me some info on Tobi assistance. I get off the phone. Linda sais...."Jada, there are some friends of mine that I get together with every week. We have a fund, instead of giving eachother presents for birthdays or holidays, we put money into this fund. I read your blog to them a while back. We decided that this Christmas we would give your family a couple of hundred of dollars....but I'm going to the bank right now. I'm getting $200.00 out and giving it to your family, so you can buy your Tobi." I cried. I couldn't even talk. The love from people amazes me......complete strangers (Linda of course not being a stranger, but her friends). I was taking the kids to their ped. doc that afternoon to get their flu shots. $15.00 a piece, plus an $89.00 balance I owed from 2007. Almost $200.00. I set that $200.00 from Linda (& friends) down on the doctors counter, paid their bill in full. Then I looked at the receptionist and said, "This was just given to me this morning, from a great bunch of people, that knew my family needed it." She looked at me like I was an alien. Linda and her friends...thank you...from the bottoms of our hearts..you have touched and helped our family more than words can express.
Wow, I have rambled a book on tonight....sorry. Hope you and yours are good tonight. Hold them close....smell their breath....that sounds crazy I know...but I do that, I lay next to Zoe, smell her breathing....hold her close while she is sleeping.
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