Admission...

It is finally official, no storms in town, so we are good to go. Zoe will be admitted tomorrow. We have to be there by 7:00 a.m. She will be having sedation, a bronchoscopy and her picc placed. Then onto her room probably until Tuesday evening.

I've waited all week, watching her, hoping that the cough would go away. I think she coughed 75-100 times yesterday. Crazy. They always ask how many times a day she is coughing, so, I tried to get an average. Sometimes you don't realize that it is that much until you try to put a number on it. Hopefully the i.v.'s will do the trick, they normally do.

We will try to update over the weekend, if not, I know Terri will for me.

Please keep Zoe in your prayers for the sedation and procedures, it is always scary when they go under sedation.

Thank you all!
Love,
Jada

Storm and hospital update...

Well, due to Tropical Storm Fay looming all around our area...Zoe's hospital has cancelled all non-emergency admissions for the next 2 days. Then of course, the sedation and o.r. are booked the beginning of the week, so they have her scheduled for general anes., bronchoscopy and picc placement at 9:30 Thursday the 28th.

Of course, we could hope and pray that all her coughing goes away in the meantime and she doesn't have to be put in at all!!! As Keeley and I always say...we can always HOPE!

I just received the bracelets! They came out really GREAT! I love them, I hope you all like them also. I will be getting them all seperated and organized in the next couple of days, hopefully will have them out in the mail on Saturday!

Thanks for all the well wishes for Zoe,
Jada

Moved, bracelets and hospital...

Hello all my dear friends! I haven't had computer access for over a week...ugghh. We moved into our new home last weekend. All went pretty good, my coffee table glass got broke, but Scott already had a new piece made for it at his work. We love our new home! It is very spacious, but still feels like home. The yard is huge with large oak trees. We live right on the marsh, across from Cumberland Island and right next door to the Crooked River State Park. The kids have already met the rangers and been fishing several times. It is a very laid back, quiet town where we feel much safer for the children.

I managed to get the bracelets ordered the day we were moving! They should be here anyday! I really hope they turn out nice. I wanted to write to you all about some of the wonderful notes, letters, postcards, etc... that I received with the orders. We are a very fortunate community(cf.com)! I have met some wonderful people through this site. It was exciting waiting for the mail everyday to see who I would receive another envelope from! Tami(izzemom) sent an adorable note to Zoe~a funny little cartoon Pseudo guy to eat all of Zoe's Pseudo! Craig(dyza) sent absolutley beautiful postcards from Scotland! Craig said he walked though 3 hours of rain around town looking for them! One from Canada, Texas, Wa.,Pa, Ky, NY, Tn., Ar., Va., Ok., Ga., Il., Al., Oh., Wv., Ca., Ne.!!! Some very nice notes and letters!! Thank you all!! I will get the bracelets out as soon as I am able.


Now, onto Zoe....she hasn't been doing too well. She finished her oral Cipro, still had 2 weeks of the Tobi left. She was coughing worse. So they called in oral Bactrim to try. She is full of wet, mucus. We actually had another 'first' experience on Friday. I took her to her favorite place for lunch (our first outing in our new town) Chick Fil A. As her and I were standing there at the counter ordering for all 6 kiddos and myself (trying to keep the bill down) she was constantly coughing. The cashier finally looked at me and said, "Is she sick??". Uggghhh. I replied, "She has Cystic Fibrosis, so she coughs, she isn't contagious." The lady was real nice, "Oh, I understand."

So we are almost done ordering when Zoe had coughed so much, she finally coughed up this puddle of white and pink mucus on the floor in front of her and I. She didn't know what to do, I quickly grabbed my wipes out of my purse and cleaned her up. She looked at me and said, "Oh mommy, I just coughed too much."
The nice cashier mopped it up, then went back to her register. Our total was $28.89. I'm now frantically looking through my purse for my debit card. Still not finding it....I told her, "Oh I am so sorry for all of this...I think it is at home, we will have to come back another time." I apoligized again, to which she replied, "No, it is fine, we have it, you are good." I just looked at her and said, "What??" "We have it m'am." Wow. The lady manager came over, signed a comp paper. I almost cried about this point. So, a crazy, sad, first episode, turned out nice. God amazes me everytime.

We also received a very lovely and generous money order from a friend of my dads, in the mail. We were completely broke after moving. We have never even met him or his wife, they just felt God wanted them to bless us. Amazing!

Anyways, all this to say I think Zoe is headed for a tune-up. Probably this week, her doc is going to be calling today to discuss seeing her. I'll let you all know. Thanks for reading if you stuck it out this long....
Take care,
Jada

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..........

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,

Jada

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...