Changes...

It seems like it has been forever since I have written….so much has been going on in our lives that I have felt like I’m sinking in a deep deep hole sometimes.

I know many of you are aware of the drive that Scott makes to work everyday (2 hours 15 min. one way). Between that drive, gas prices, his company not allowing overtime in the past year, and a very large mortgage, we are struggling very bad. We finally realized, with the help of my parents telling us, “Do you two realize how much stress you are under?”, that something had to change. I don’t want this to be a whining session, but felt like I needed to talk about it.

We moved here 3 years ago, that far away from Scott’s work, strictly for Zoe’s health care, in the hopes that a job would come available closer. Well there aren’t any jobs that will pay him enough and with the benefits we need. Zoe’s first year here wasn’t too bad, but her next 2 she has had a rougher time. So I guess between her health, him driving so much, being worried about my older childrens schooling and futures, a horrible financial situation, I have been extremely stressed. I don’t give Scott any attention hardly, I feel like by the time he is home, I have been touched, prodded, depleted of anything left to give to him. So, pretty much everything has been leading to a down hill spiral. We decided to talk about it and figure out exactly what is in our control. So, our mortgage and how far he drives are two things that we can adjust. We are selling our home, looking for a rental about an hour north of where we are now, which will take about 40 minutes off his drive one way and cut our housing payment down quite a bit. It has been a hard decision to make, my older kids have made friends here, they are on a swim team 3 miles down the road, I hate taking them away from all that. But, we have to try anything so that we can make it.

Zoe is sick again. She was on oral Bactrim twice in the last 2 months, then well for a couple of weeks, now she has had a fever of 101-103 since Wed., they started her on Keflex today for two weeks. We will see what happens.

I do have some good news, our Zoe for Life team ended up raising nearly 10 thousand for Great Strides. We don’t normally take the prizes that you can get when you raise enough money, but this year I was looking at the list and saw that we had raised enough to receive a camcorder, well, ours has been broken since last October, so our cff office ordered one for us. That was so nice because we knew we couldn’t afford a new one and I feel like we are missing so much live video of the kids growing up.

The kids have done awesome on their swim team. Austin(14) has placed 1st in nearly every race he has been in. Alex(12) has placed 1st,2nd, or 3rd in every race he has had. Madison(10) has gotten a few 1st, 2nds, 3rds, and 4ths. Sydney(6), this is her first year on swim team, has placed 1st in almost all of her races! She loves it and needed the self-esteem, she is kind of quieter and stuck in the middle of older siblings and then Zoe younger.

Please continue to pray for Zoe's health......thank you so very much....

Love,
Jada

Our Great Strides Walk

Great Strides has been going great!! Our walk has grown from about 25 people the first year we participated in it to over 200 this year! Amazing! It was such a beautiful thing to see, all those people raising money for the CFF. Our team, "Zoe for Life", has raised over $8000.00 so far! I'm pretty sure it will reach $10,000.00 when it is all said and done! Thank you all!!! We can't do this alone.

Zoe finished her 30 day course of Bactrim the end of April. She was good for 2 weeks. Then she got another infection that has made her extremely mucousy. Coughing, choking, etc...So, back on Bactrim last week. Her clinic appt. went good, her weight was very good! They are thrilled at how well she does with her weight. It does take a lot of work to keep it up. Every calorie and fat gram we can get into her!! They took her blood to check all her vitamin and iron levels again since there were a few of them that were low last time. Other than that, we just keep trucking...

My parents are in town right now, which I absolutely love! I wish they lived closer, but I am grateful that they are traveling now with their rv. My brother got married here a couple of weekends ago, it was so great having so much of us kids together again. There are 10 of us, so getting us all together has been impossible so far, but we had 6 of us there this time. I enjoyed them and their spouses tremendously.

I have a cf support group meeting tonight, so I better run...

Wednesday was the Princess Wishes Tea Party! It was done extremely well, I was impressed. They decorated the inside of an old beautiful church, it actually looked like a little castle! Of course just like I figured would happen, Zoe was extremely nervous and shy. She hid behind me most of the time. Finally towards the end of the lunch, she decided she wanted to go say hi to the Cinderella and Belle. So, up we go to try to get the picture I so wanted. Well, she stood there, but I couldn't get a smile for anything!!:brokenheart; She had a good time though, especially when she got home and could tell her sisters all about it.
The next night we went to the Disney Princess on Ice show that they had given us 6 tickets to! "They" being "Dreams Come True". They did the Princess Tea and gave us the tickets, it was so wonderful of them. Also at the tea, they gave Zoe an official program, light-up Cinderella toy, crown, coloring book, tons of hair stuff, nail polish, lip glosses, jewelry, the beautiful dress she is wearing in the picture, etc...The ice show actually was amazing. Very professional ice skaters! They even had a dragon that blew real flames onto the ice!! The kids loved it! We were sitting with the other "Dreams Come True" kids at the show, one of them I had talked to her mom at the tea for a few minutes, never sharing what was wrong with our girls. At the show I found out she has Leukemia, but is in full remission. Her dad said that type she has is 90% curable after treatments, so they fully expect her to never have a reoccurance. I was very happy for them. Then he asked about Zoe, we told him she has cf, he pondered for minute then asked, is it curable?? We said, no, not yet. He gave us his empathy. It was amazing seeing all these little girls together, all with their own medical problems, all princesses in their hearts. Sad, but amazing.

Zoe is still coughing and clearing her throat a lot. We only have one more week on the Bactrim. I hope it all clears up before then. I know it is probably the da#@ MRSA raising its ugly head again. We will just continue the fight.

We have had some great responses in the fund raising department though! Our dear friends, Michael & Theo had a recruitment dinner at their home Sunday evening. It went really great! They had an excellent turn out, we met some very nice people who truly seem very concerned. It was heart warming. We have received a little over $1000.00 in the mail this week!! Yeah!!! The walk is in two weeks!

Good night and thank you for reading....please continue to pray for our precious Zoe....and all of our friends with cf fighting the fight everyday.

Love,

Jada

Birthday happenings...

Our little girl is four!! She had a wonderful birthday celebration! Her favorite thing right now is anything that has "Princesses and Princes". She is my girlie girl for sure.

We received a surprise phone call last week from "Dreams Come True". This week here in Jacksonville is the "Disney Princesses on Ice" show. So, Dreams Come True is doing a Princess tea party tomorrow. They invited Zoe! They will do hair, make-up, games, have lunch & tea of course, she also will get her very own princess dress to keep and there will be 2 of the Disney Princesses there!! She is going to be so excited, I can hardly wait to see her face. Our family is also going to receive tickets to actually go see the opening night of the ice show on Thursday night! We have never been to see one because of the expense of the tickets, we feel very blessed!

I haven't written in a while, so updates are needed on Zoe's health. The 'cold' went away, but a cough set in. So, 2 weeks ago she was put on Bactrim. Today is the 2 week mark, if she was 100%, then we could stop the Bactrim, if not, 2 more weeks. Uggghhh, still not all cleared up. Here we go with 2 more weeks. This cycle we run with cf....it gets tough.

On a good note, we sent out our Great Strides letters last week and received our first donations yesterday! $150.00 already!!! Yeah!!! We also received a CFF blanket from one of Scott's Uncles! We have a tradition around here once we start receiving the "Zoe for Life" donations back in the mail, the kids always want to be the one to go to the mailbox to see if we got one that day! You can watch from the window to see their expressions as they are looking through the pile, they smile & start yelling if we get one! It is so heart warming their love for their sister and a cure. I have a dear friend that is doing a 'Recruitment' dinner at her house for our team on Sunday, her family has really jumped on board to help, it is humbling. Then last night, yet another surprise, I received an e-mail from my friend that I have been friends with for 18 years, she is in charge of a huge home schooling network. She wrote up a fantastic letter and sent it out to over 600 families!!!! I cried. We feel so blessed to have all these people concerned for our Zoe.

Have a great day!
Jada

CF realization

I knew the day would come, just really didn't think it was going to come so early. Yesterday, Zoe walked up to me, looked up at me with those big blue eyes and said "Mommy, do you have cf?" I stopped what I was doing. I looked down at her thinking, what do I say????? I said, "No, baby, mommy doesn't have cf." To which she replies, "Why not?" Wow. She isn't even 4 yet. This is harder than I thought it was going to be....the moment they notice they are different, the moment they realize they are the only one in the family with cf. I said, "I guess God wanted you to be extra special." She was good with that answer. She went about her normal 3 yr old play. I cried.

Indemnity!! I never knew!

Today I found out about something wonderful. When I say wonderful, I mean WONDERFUL!! Everytime Zoe is in the hospital, Scott takes vacation or sick time, whatever he has available. When that time runs out, as it always does, it gets real rough. My very dear friend, Mel, who also happens to have cf, told me today about indemnities. I cried when she told me about this insurance. Essentially what it does is pay me money when Zoe is in the hospital, on home health care, for an out patient surgery procedure, for an emergency visit, and I.C.U. stays also. The pay is different for all of the above, but oh my gosh, what a blessing, what a relief. The best thing of all is, that since Zoe is so young, we can get a really great monthly rate, forever! The rate will never change, ever! I am going to let my cf social worker know about this, as well as every family I personally know that has cf in their lives. Thank you Melissa, I love you!

Zoe's cold seems to be better as far as her nose goes. She isn't sneezing constantly anymore. Today she had quite a few very mucousy coughing sessions. I really pray she can fight this on her own and not have to do antibiotics. It has only been 5 weeks since antibiotics and her tune-up. I really want at least that 3 months we had last tune-up, cough-free.

Today I have been thinking about my support system that I have with cf.com. I love my friends. I am grateful for them. Actually in all reality, I wouldn't know what to do without them. They relate, they love me, even in my quirky moments....

Goodnight to all,
Love,
Jada

Zoe has a cold...

Last night Zoe started acting sick. Actually, to explain, Zoe hasn't caught many "colds". The last "cold" she had was probably about 2 years ago. Weird, I know. You see, when Zoe is sick, it is a lung bacterial infection. It takes us months and months of oral, inhaled and iv antibiotics to clear her up then. But, as far as the normal kid "colds" she just doesn't normally get them. Soooooo.....the big question now will be....will this "cold" turn into a lung issue???? I hope not. We are going to watch her for a few days and see what happens. Right now, it is an extremely stuffy nose, sneezing, watery eyes, occasional cough. MAYBE it will go away....
On another note, we met a wonderful gal tonight, talked to her about cf, the walk, etc....she told us that she and others will be on board to join our team, "Zoe for Life" for the Great Strides walk in April! It is always so wonderful to Scott and myself to meet people that seem to 'really' care.
Thank you all for your love and support...without you we would be NO-Where.
Have a great night!
Scott and Jada....and of course, Zoe