Good Surgery!!

Zoe's 2nd sinus surgery on Monday went very well! She still had some packing in her sinus cavity, so they removed that, cleaned her out again, took cultures and finished up in less than 45 minutes. Her O2 was great right after, holding around 96-99! She had her regular CF clinic appt. on Friday. These cultures came back clean also! So, she is still antibiotic free as of right now. She is recovering well, Dr. said she has a lot of 'boogers' in her nose for just getting cleaned out, but her ENT doc said she will have some drainage, etc... for a couple of weeks.

The yucky news was that Zoe had lost over a pound. Since her diagnosis, when we got her caught up on the charts, that was the last time we have ever heard anything about her weight. She has been in the 75-90%. It took a lot of work to get her there...but she has steadily been gaining since diagnosis. I think one of the things that has hurt us the most is that about 2 months ago, she decided that milk and Ranch dressing all taste weird now. She won't drink milk at all now and quit dipping everything in Ranch. She had always drank 8oz. of whole milk mixed with half & half at every meal. Now all she will drink is WATER!! Ugghh.

So, one of the things we are going to try is 15mg. of zinc a day. Her doc and nutritionist said that sometimes when things suddenly taste different or yucky, it can be a zinc deficiency. We all agreed it wouldn't hurt to try. They want to see her in 2 months instead of 3, to check her weight.

Thank you all for praying for Zoe's O2 to be good after this surgery....prayers were heard and answered!!

Have a wonderful week...

Jada

Surgery Again Tomorrow...

We have had a nice weekend...took the kids to see Santa yesterday. We take them to a local realty office that has a 'real' Santa every year, so the girls get to see the same guy. They also have a little train ride that Zoe loves. I like to take them there because I feel that Zoe is exposed to a less germs than the typical 'mall Santa'.

Then I picked up my oldest daughter, Tara, who came home with us for the weekend. She babysat last night so Scott and I could do a little shopping and go have dinner. We ended up spending the whole time in one store, Ross, got some presents, then we were hungry and the pizzeria I wanted to go to had closed already! I must say, I do hate that part about being away in a smaller town now, everything closes so early! So we drove towards home, picked up a pizza at Papa Johns and ate pizza on our cozy bed.

Today we went to church, dropped all the kids off at the house, except Tara, Zoe and myself. We went to lunch and did a little shopping.

Now I am home, making baked brie, drinking a new wine Keeley told me about and starting to think about Zoe's surgery tomorrow. Uggh. Please pray that her O2 stays stable this time, so we can go home quickly. She has started a cough/clearing throat again yesterday, and her nose is driving her crazy running constantly since the last surgery.

Thank you all for your continued prayers! I pray that you and yours are doing well...

Love,

Jada

Culture Results....

Yesterday was Zoe's follow-up after sinus surgery and pre-op physical for her next sinus surgery on Monday. I was absolutely shocked to find out that both of her cultures from her sinuses and her throat came back completely CLEAN!! They did not grow anything! I asked her doctor how sinuses that were completely full of thick, yellow mucus and pus could culture zero bacteria??? Amazes me. CF baffles me. Then there are the clinic visits where she seems like all is great and they call a week later saying she cultured some weird, nasty bacteria!?!? Don't get me wrong...I am THRILLED that she actually left clinic for the first time in I can't remember without having to get a script filled for an antibiotic!

So the plan is for her second surgery Monday. Please keep her in your thoughts and prayers that her O2 won't drop like last time. That was a little scary for us.

I have to share something that I thought was hilarious. On Zoe's check out paper from clinic yesterday her doctor wrote:

Patient Instructions:

-Ok off abxs

-Medically clear for 2nd look sinus surgery Dec. 8

-Ask ENT to repeat CF culture from tracheal aspirate

CF FU as scheduled


CF FU......MY THOUGHTS EXACTLY!!!!!!!!!!! LOL!!!!

Have a great day.....

Love,
Jada

Our Family 2008

We are home....

We got home Sunday night, one night longer stay than we were expecting, but not too bad. The surgery went well. It did take the whole two hours. Her ENT doc said that her sinus passages were tiny, swollen, and filled with a "thick, like toothpaste, yellow mucus". Yeah. Anyways, she cleared her all out, took samples for cultures.

In recovery, we came to her. She was crying. Tears were rolling down her cheeks. I picked her up out of the bed they had her in. She snuggled up, then fell restlessly back to sleep in my arms. For the next 2 hours plus, her sats dropped down into the 70's. I was scared. Scott was scared. We have never seen her sats drop before. They ended up doing blow by oxygen for over an hour and a half. Finally, she was able to keep her O2 over 92, so they sent us to her room. Because of that, they kept the O2 sensor on her the entire hospital stay (she was not happy about the E.T. light being on all the time)!!

Then we found out that her pulm. doc wanted to make sure she "pooped" before discharge. Of course, she didn't. So they kept her another night. Ugggh. A little Miralax later...and we get our discharge.

She has had to take some regular Tylenol since we have been home. The first 2 days was Tylenol with Codeine. She was in a bit of pain, sinus area and throat. Now she has a lot of draining going on. She is sniffing constantly. I guess that is to be expected after clearing out the sinus cavities. We will wait to see what her cultures grow to see what antibiotics they want to put her on. Other than that, she has her second "clean-out" sinus surgery on the 8th.

I want to wish you all, my family, a very warm, happy, Thanksgiving!!

Love,
Jada and family

Sinus Surgery

Tomorrow is the day. We have to be there at 8:00 a.m., surgery is at 10:00. It is supposed to take 2 hours. Then she will be admitted for a couple of days. I have to admit, I'm a little nervous about this admission. Mainly because of 2 hours of anesthesia, and the 'pain' after factor. She hasn't ever had anything besides picc placements, bronchs, endoscopies, etc... never anything associated with pain afterwards. I have no idea how she even handles 'pain' yet. Does she have a low or high pain tolerance level??? Ugghh. I do know she panics with picc bandage removals, cries alligator tears because it "hurts".

Sitting there for 2 hours during surgery....wondering...thinking....waiting...I think it could be a form of torture.

Please hold Zoe in prayer tomorrow

Thank you all

Love,
Jada

For my husband, my dad, and all the other Veterans....

Thank you.....

I cry thinking about your dedication, your sacrifice, your love for your country. Without you, without every Veteran, we would not be living in a free country.

I honor you, respect you, thank you.

I love you Scott and Dad with all my heart!!!

Jada

CT scan results

Good day everyone! I'm finally updating on Zoe. Since she had orals, Tobi, 3 1/2 wks. of i.v.'s, oral & Tobi, all since June, her doctors started mentioning maybe it was her sinuses giving her the cough, cough, clear throat that she does all the time.
So we saw the ENT, who ordered a CT of her sinuses. We got the results yesterday.
Yes, could very well be why she is still coughing, clearing her throat, and a bit more tired than usual. Her right is completely packed, full and bulging. Also above her left eye there is a spot that is full.
So she will be having sinus surgery November 21st. Then they will do a second 'quick' look & clean out 2 weeks later. The first surgery she will be in the hospital for 2 days. Of course they will culture everything out of her sinuses and also she (her doc) will get a culture of sputum from down her throat for pulmonology.
I hope she isn't in a lot of pain, this is really the first time she has had a surgery where they are doing something. She has had Bronchs, Endoscopies, PICC placements, but nothing before where they said she might be in some pain.
I pray this works for her and she can get a break for a bit, she hasn't had a break since that little 2 1/2 month break last Feb.

Hope you and yours are doing well....thank you for all your thoughts and prayers.

Love,
Jada

CFF Event...Moonlight Martinis

Michael, Theo, Jada, Tammy, Scott

Hello! Thought I would post on the Moonlight Martinis Saturday night....

Saturday night was the CFF "Moonlight Martinis". We invited very dear friends of ours, Theo and Michael, my oldest daughter, Tara and my oldest son, Dalton and his wife of 3 months, Donna.

It was a fantastic night! Scott and I were invited by Star Country Media to be their guests, so we got to go to the V.I.P. meet with Tammy Cochran. It was awesome! She is such a terrific lady. You would think being a famous singer, she would be a little more 'stiff', but she isn't one bit! She is very down to earth. She has a strong bond to all of us that deal with cf and it shows. It was very strange to be holding hands with a famous person, but not really all in the same moment. (I was holding her hand to take her over to meet Theo and Michael.)

Her singing was awesome! She gave her speech, then sang "Angels in Waiting" while a video played the pics of her brothers. Then they did the "Bid for a Cure". That is where they auction off NOTHING but you bid money strictly to go for a cure. Her speech was amazing. We all were holding hands and crying. The adult cf doc was there, with his wonderful wife, and their right hand nurse(who also lost 2 brothers to CF). They stayed at our table with us, so it was a very emotional night. We made some very good friends that night, a night to never forget.

After the bid to a cure was over, Tammy decided that the CFF needed more money!!! So she got up to the microphone and announced that she personally was going to go up to every person there and frisk them for any money (coins & cash) they have on them!!! Of course she was joking about the actual 'frisking' part, but she did go up to every single person there and collect money!! She got $50.00 out of my son!! It was great!!! Only someone famous could get away with doing that!!!

Another friend of ours was there, John, he is on team Zoe for the CFF Singles group, he is such a great guy, always volunteering his time. This last hospital stay for Zoe, he called all the way from Alaska (he was on a cruise) to check on her!!

We ended the night with hugs and promises to stay in touch. I gave Tammy one of the "Breathe" bracelets. She put it on immediately. We received an e-mail from her Tuesday saying she had read Zoe's blog and watched the video, was happy she had a way to keep up with us! She said, "I still have on my 'Breathe' bracelet". What a pleasure it was meeting her!

Will post later on Zoe's health status....

Jada

Cough, cough, clear throat.....

Hi all! Hope you and yours are doing great! We are doing not too bad.....does that make sense??? We are starting our last week of Tobi tomorrow. The oral antibiotics ended last Monday. Today Zoe coughed and cleared her throat ALL day!!! I looked in her nose...there is quite a bit of junk in there. I think Tuesday I will make her an ENT appt. She hasn't had a sinus x-ray or ct scan in a while, I think it is time. Wouldn't it be awesome if her cough cough throat clearing was all chalked up to sinuses?? I don't know though, she keeps culturing these weird bacteria..... oh always such a question????

Yes, I guess I"m babbling. I've been accused of babbling more than once...oh yeah and VERY loud might I add. I am NOT a soft spoken woman. Sometimes I wish I was. I feel like the mom on 'My Big Fat Greek Wedding', that pretty much sums up my personality.

Scott's parents were here this week for a few days on their way back to Englewood, Fl. They are truly great people. We have our 'times' of disagreement, but overall, they are truly wonderful. I feel Scott is such a wonderful husband, father, because of them.

Our Moonlight Martini's (CFF event) is Saturday night! I am sooooo excited!! Star Country Media picked our famly to be their family to talk about in their media coverage for the event....so they are donating our tickets ($125.00 a piece!!). I think we also get to have a personal meet with Tammy Cochran before the event!! So much fun...but I am planning on having my purse FULL of tissues. She will be speaking, then ending the evening with "Angels in Waiting".....

Love to everyone tonight....hold them close...

Enterobacter...new bacteria

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.

Goodnight,
Jada

Update...

Finally!!! Zoe's PICC was pulled!! Yeah! I have to tell you, the biggest thing with Zoe is the bandage on the PICC. "Don't touch my bandage!! Don't touch it!! " Those are her famous words.

So, needless to say, when you have to pull a PICC, the bandage has to come off. Her doctor, Kathyrn, prepared in advance, with music from her own personal ipod, music Zoe likes. Disney Princess songs. She let Zoe hold her player in her right hand, while she worked on the bandage on the left arm. She did panic a bit while the bandage was being removed, but it was much better than previously!!

Kathryn is an awesome doctor and person, she cares about her patients, goes out of her way. She (Kathryn&other docs) decided that Zoe should do another month of Tobi and 2 weeks of oral Augmentin. Just because she isn't quite at her 'baseline'. She is still clearing her throat frequently, not coughing though, which is great, considering she was coughing up to 75 times a day before her hospital admission. I will call tomorrow to get her culture results from Monday. I honestly cannot see how she could culture anything but normal oral flora after this onslaught of antibiotics. But then again, my dearest friend, Mel, who is 40 living with CF, pointed out to me that, Jada, this is CF, expect anything. Yeah, words of wisdom. I love her to death.

I found out that Zoe's doc has read my blog. How COOL is that???? She said it was great to read what you guys go through, outside of clinic. I felt like, WOW, that is awesome, they care enough to read about OUR lives. AWESOME !!

We are getting up early tomorrow. Early being 7:00 a.m., (we home school, so 7 is early for us) heading out the door by 8, to go to the CFF office to do some envelope stuffing for a few hours. All the kids are helping, so we have many hands! I am bringing all of Zoe's nebs, albuterol, pulmozyme, her vest, then her Tobi. We will do all that at the office while the kids stuff envelopes!! Then the kiddos have their flu shots at 1:30. Yeah. We won't even discuss the financial issues of late.....they have been crazy....with Tobi alone being $100.00!!! Uggghhh!!! No wonder I can never afford to buy "extra" things like clothes for everyone!!!

Alright, I guess I have talked enough....thanks for listening! Oh and place those bracelet orders!!!!! I want to get the order in next week.

Take care of YOU!

Love,
Jada

Another week of i.v. antibiotics..

Zoe's hospital stay went well. She was in for 5 days then got to go home. She was quite happy! She went home on 2 i.v. antibiotics, Tobra and Timentin, every 8 hours. That puts me starting i.v.'s at 10 pm finishing at 12. Getting up at 5:00 a.m. to get them to room temp, starting at 6:00 a.m., finishing at 8:00 a.m. Then doing it all again at 2:00 p.m. Plus an hour of breathing treatments and cpt 2 times a day. It is a full time job just taking care of her medical needs. She is showing improvement. Her cough had decreased in frequency and junkiness.
We went to her CF appt. Friday, thinking the PICC would be pulled and we would be done with i.v.s. Her doc said, I have good news and bad news...the good news is we are stopping the Tobra. The bad news is we are continuing the Timentin for another week. She had just coughed up quite a bit of yucky mucus on the way to clinic. Ugghh. So they weren't quite ready to let her be i.v. free.
Now, Zoe was happy. You see, the worst thing about a PICC and the i.v.s to her is the bandage being removed. It has to be changed once a week. She cries, big alligator tears...."Please don't take the band-aid off...." It is so sad. She has to be tough for so many things...tons of oral meds, hours of breathing treatments & cpt, i.v.'s, but you get to that bandage thing and she loses it. Way too much for a 4 year old.
Yes, I suppose I am feeling sorry about now. It happens. I hate CF. I hate what it does to Zoe, what it does to everyone that has this terrible disease.
We lost 2 cf'ers this week. Young people in the prime of their lives. I can do nothing but pray for their families. It makes you feel so helpless.
So...enough whining...off to take Timentin out of fridge....
Thank you for you thoughts and prayers for Princess Zoe,
Jada

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...

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

Zyrtec....over the counter now!!

Well, today our insurance turned down the medicine, Zyrtec, that Zoe has been on for about 2 years now. They made it an over the counter med, so, insurance won't pay for it anymore. We were getting 3 months from Medco for $30.00. Now, over the counter, one month costs $30.00!!! Soooo, we talked to her docs, decided to try Allegra, since it is still a prescription, works just as well as Zyrtec, but actually a little better because it doesn't pass the brain barrier, meaning it doesn't cause drowsiness like Zyrtec can. So, we are excited about trying another new med. Ha.
On another note, Dalton, my 20 year old, had his genetics done 2 weeks ago. They were actually concerned that he might have both cf genes due to his 'asthma, pneumonia, etc....' problems his whole life. Thank GOD, he is only a carrier. As a matter of fact, so far, we have had 7 of the kids tested....so much for those statistics about 25%carriers, 25%cf, 50%nothing!! All 7 so far are at LEAST carriers. Everyone sais we should play the lottery!!! Actually we do, we never win anything. Zoe's culture should be back by Friday...hoping for a clear one. We are still cough free...week four now!!! Yeah!!!!
Talk to ya'll tomorrow...thanks for your love and support...take care of YOU!!

Love,
Jada

First day of blog....

Today is our first blog comment...we are just starting our web page...hoping that this will bring awareness!!!! Zoe has been "cough-free" and antibiotic free for about 4 weeks now!!! We feel like we are on cloud nine! Please feel free to post comments....we really hope to get this up and running in the next week or so!!
By the way, Terri, our very good friend, is the first one to visit our site....!!! love ya honey!
Love,
Scott and Jada