Thursday, December 17, 2009
Please pray for her daughter, Jazmine Rose, who is only 12 years old. Also, her husband, Robert.
I am not sure what my days are going to hold....Mel and I talked everyday on the phone. I miss her so very much, my heart aches beyond belief.
I love ya girlie.....all the way to heaven and back.
Sunday, December 6, 2009
Mel (my bestfriend) is doing the same. Her CO2 level got to be 81 the day after she went on the Bi-Pap, but now it is back up to 88, using the Bi-Pap. I am flying to New York tomorrow, a very generous couple has bought me my tickets and hotel near the hospital. Our oldest daughter, Tara, is on her way to our house right now to take care of Zoe while I am gone and Scott is at work. I couldn't make this trip if it wasn't for these angelic people in my life (the couple, my husband-Scott, Tara). People that know and love Mel, are hoping and praying that me being by her side will help her in some small way.
Please pray for Mel, Zoe and my family to be well while I am gone.
Thursday, December 3, 2009
Zoe woke up in the middle of the night Tuesday with so much mucus in her throat, she was constantly choking. She has a really bad sore throat, runny, stuffy nose and a wet gunky cough. She was already scheduled to go to clinic tomorrow for her H1N1 booster, so, I'll let them take a peek at her then to see if they want to do antibiotics. We have had such a long stretch without her being sick.
My bestfriend has been in the hospital for 2 weeks now with a CF exasperation. She is not moving forward, but backwards. For the first time ever in her life, she was put on the Bi-Pap machine to help her with her breathing. Her CO2 level was 92. Normal is in the 20's-30's. She can't talk while on the machine, so she has her social worker calling me to give me updates. Thank God. I'd be going insane without knowing how she is doing.
It is so hard, being so far away (she lives in NY) and not being able to do anything. I have to admit I've been pretty scared about losing her. Please join us in prayers for her to make a turn around.
Another sweet, young, lady with CF passed yesterday. She was a mother to a little 6 year old boy. She died from complications with her CF from getting H1N1. Her name was Ginger, Gingerloveslife, was her user name for cf.com. She loved life. Please pray for her family, husband, and son.
Well, a blog of yucky news. Sorry, but sometimes this is what it's like.
Monday, November 30, 2009
I think I will give you the recap by following the pictures in the slide show….
When Nana & Pa came through to visit in Oct., Pa captured this great picture of Nana with the girls! Also the tomato plants are the ones that Pa and Nana helped the kids buy and plant. Pa is the professional at tomato plants! Nana is doing well after her breast surgery to remove the cancerous lump. She will start radiation soon. Please continue to keep her in your prayers.
Caleb has been home for several passes. He graduates from Youth Challenge Academy on Dec. 19th! He is enlisting in the National Guard this week. We are so proud of his accomplishments!
We adopted 2 female kitties from a lady that does cat rescues. The girls LOVE them! Due to several members of our family being a little allergic, they are outdoor kitties.
Our family took at one night get away to St. Augustine, Fl. We found an inexpensive hotel on the beach w/ a pool that had a huge waterslide! It was a much needed get away for just a single night. My sister lives in Palatka, which is about 45 minutes south of St. Augustine. We live about and hour north of St. Augustine. We hadn’t talked in a couple of months. Have you ever realized when God does something that was very much needed in your life? He did that day. While we were enjoying the waterslide at the pool, around the corner came my sister! They also were taking a one night getaway, out of the blue. What are the chances that we would be at the same hotel, the same night??? It was awesome! We got some much needed talking done….girl talk! Yay! The kids had a blast having their cousins to play with!
We had several CFF events in the last few months…..Golf, Tango by Moonlight and Singles Greatest Night. There are pictures for all 3 events. We were volunteers at the golf event, attended the Tango event, and were the parents of an Ambassador for the Singles event. Our friends at the Singles event, Chris, Carrie and Keeley are all also parents of Ambassadors for Singles. There are only 4 Ambassadors that the teams of singles raise money for. I have talked about these singles before, they are amazing young single professionals that commit to raising at least $1500.00 each for CFF! There is always a competition to see which of the 4 teams will raise the most money. This year, Chris (team Cammie) decided that whomever won would get to flaunt HOT PINK HEELS. So, as you can see, my dear friend, Keeley won the honors, her daughter’s team, team Leila won!! It was a fantastic evening with friends! The Singles raised over $150,000.00!!!!!!
We have a newly acquired used drum set in the middle of our house. It is LOUD! The kids love it though! Zoe is practicing to be like Emily from Rock CF!!
We were blessed beyond our belief last week…..
The school, First Coast Christian, has been doing our Great Strides Walk for team Zoe for a few years now. Which is a blessing in itself. But…this November they have what they call a month of love. For each week of Nov. they have a special person, family, organization, etc….they write letters to, raise money for, have a whole single day of prayer for that person, etc… Well, they picked our little Zoe for one of their weeks. To my total astonishment, as you can see in the picture, they wrote hundreds of letters to Zoe. We sat down one night and read them. We cried many tears during that reading session. The letters were from the youngest kids to the high schoolers. Straight from their hearts. The love and caring in their letters was unbelievable. One girl wrote how she was donating her paycheck, some gave icecream coupons, all gave their prayers and hope for Zoe’s future. I cry still when I think about these kids.
The funds they collected could not have come at a more perfect time. You see, we were behind in our rent for almost the exact amount they gave us a check for. We have had a bunch of medical bills and medicine co-pays lately, so things were tight. I cried when I opened the envelope. Scott and I were just talking on the phone before I got to the school that day about how we were going to come up with the rent money. I am still in awe.
We lost 2 more Cf’ers this month at cf.com . A young lady and an 18 month old little boy. We NEED a CURE. Our hearts break for the families……please keep them in your prayers.
My dearest friend, Mel, has been in the hospital with a CF exasperation for 11 days now. She has had a rough time. She normally has to stay at least a month to get a good lung clean-up. I feel so helpless being so far away….. Please add her to your prayers…..
As far as health goes around here…..Scott had a horrible cold that no one but him caught. But this week Caleb and Alex had a new cold. We are hoping and praying that Zoe doesn’t catch it. Zoe has been doing very well! We feel so happy that she has been so healthy for such a long stretch!!
Well, if you held out this long, thank you!
God bless you and yours………
Monday, November 9, 2009
First of all...my mother in law, has first stage breast cancer. The prognosis is very good. They will be doing a lumpectomy to remove the one spot of cancer. Then she will endure 5-6 weeks of 5 days a week radiation. I asked what the side affects of radiation are....tiredness and itchy skin. OK, NOT as bad as chemo, but still, yucky. I pray that all will go well and my mom-in-love will be fine.....
Next... We went to an annual event for the CFF. We have gone to this event since Zoe's diagnosis in 2005. The speaker that night, in 10-05, was Beth McCarthy's husband. She was on oxygen, waiting on transplant. They had a small son at the time. This was our first experience hearing a speech. A CFF speech. It rocked our world. Not that our world wasn't already rocked by Zoe's diagnosis earlier that year, but to hear a man talk about CF....we had never heard a CF speech. We took many quotes from Mr. McCarthy's speech that night and have used them ever since..... He said" Cf has NO vacation....no break from treatments, no break from any of it, it never let's go., ever." Also...."CF is a MONSTER of a disease." He was awesome that night, talking about his wife, the mother to their young son.
Saturday night at our event, the speaker, a man we respect, Mr.Roger, gave his speech. About his 40 year old daugher, Claire, with Cf. How she was doing ok. How he lost her brother some 20 years earlier to CF. Then he talked about local people that lost their battle.....Grant....Jessica....and then the ones that were fighting at this very moment for their life, Beth, waiting at Mayo for her lungs, her son and husband fighting along her side.... About a half hour after the speech, the ladies from CFF received a phone call saying that Beth had lost her battle with CF. The ladies from the CFF office were devastated. They were crying. We were crying. Hard to believe that Roger had just talked about her in his speech. I have met her, several times, my son, Dalton, has met her. She was an amazing, fighting little woman. So sad. We all raised our glasses, said,, "to Beth"...it was amazing....but surreal.....for all that to happen in one night at a CFF event. For a CF death to occur at an actual CFF fundraising event....wow....did God plan this?? Probably not. But....you could have heard a pin drop in the room while Claudia told everyone about Beth losing her battle with CF. Don't you know that everyone that left that event that night realized that CF is REAL, fing REAL, that we are losing people......
Soooo...it was a rough week news wise. We do have one more CFF event the 20th. Team Zoe for the Singles!!!! yeah!!!! Hopefully we will receive no bad news....
Take care of you and yours......................
Wednesday, October 28, 2009
Thank you for thinking of her and praying for her......it means the world to us!
Take care of you and yours......
Thursday, October 22, 2009
Her BMI has dropped to 50, mainly because she grew 2 inches in height! I've had a lot of people tell me lately that she has gotten soooo tall, I guess they were right!
Her nose is yucky, again. So, in thinking of ways to help keep her nasal passages cleaner (she has an extreme fear of sprays/and or water going in her nose/so we don't do rinses)....her doc came up with the idea to try hypertonic 7%, twice a day, with a mask. She already does all her nebs with a mask, so that was no change for her. She tolerated it well in clinic and did this morning also. She coughs some during the treatment and has since coughed a few wet coughs this afternoon.
She still hasn't got the hang of doing pft's, so we don't have any numbers for that. They did her normal throat swab, results will be next week.
Discussed the H1N1 vaccine, they want her to have it as soon as we can get it. We were not sure if we were going to give her to her, but after talking with her doctor, it sounds pretty rough. They have many kids pretty sick with it. They stressed to me how hard it hits the lungs. So, I guess as soon as we can find it, she will get it.
Due to the fact that Zoe won't use an inhaler for her albuterol (she nebs it), now with the added hyper, she sits for 90 minutes in order to do albuterol, hypertonic, pulmozyme, then 30 minutes of vest. A long time for a little 5 year old girl to sit, but she is a trooper, takes it so well.
Speaking of Ms. Zoe, she is begging me to play with her.....sooooo....off I go!
Tuesday, October 20, 2009
Zoe has been doing soooo good. She has started lately with a little clearing of throat/cough when exhaling/talking...so...we have clinic tomorrow, I am expecting an excellent visit...meaning....I am really waiting for the other shoe to DROP. Why does cf do this to us? Make us skeptics???
Scott's wonderful parents visited! We had a terrific time with them! We even had a lovely dinner out....that was wonderful, getting to enjoy a few hours of time talking with them without the little ones wanting attention. They are great parents! We love them dearly!
On another note....we are in the business of fall fund raising with CFF. We volunteer for several events, attend several just for the fun of it, etc....fall is a busy time!! I will try to post the pics of the first poker run we did, then had a dinner for the singles team zoe, next is a golf tournament, then my favorite, Moonlight Martini's, then my next fav...Singles Greatest Night! Lots of fun! Singles....let me explain who they are....they are a bunch of single people in Jacksonville, Fl., that normally have no connection to anyone with CF. They are just awesome single adults who want to make a difference. They join one of the teams (like team Zoe, team Leila(she is in my pics above, team cammie etc...there are only around 6 teams). Each single person is committed at the beginning of the season to raising $1500.00!!! YES!!! That is each individuals commitment!! These are AWESOME single persons! Then on Singles Greatest Night (in November) they have a speech, auction, etc... to celebrate the money they raised! It is terrific-as all of them are!!! We are so grateful for each and everyone of them......
Take care of you and yours...................
Jada Pictures above in slideshow of singles, Madison's b-day, Caleb's weekend home(shooting guns).
Wednesday, September 30, 2009
The house was perfect , the view was perfect, the company was perfect, I never wanted to leave. I have always felt a calling for the beach, maybe I was meant to be a beach bum. Except for the bum part. I spent countless hours sitting on the deck, enjoying the sun and ocean breeze.
We took all of our food for meals, we tried to make it extra special for the kids, so we had steak one night, mahi another night, Belgian waffles (with fruit, whipped cream, butter, syrup, sprinkles), icecream cones, eggs benedict. It was good. We literally stayed at the beach house the entire time. Scott did have to go into work a little on Sunday, so he brought pizza for lunch that day, other than that, we cooked.
It was so relaxing. The kids got up at sunrise the last morning and went out on the beach collecting shells. They spent a lot of time collecting shells, they ended up with well over 200.
The house had every thing I would have in my house. Stereo system that played in every room with controls in every room, even played out on the deck. Built in cutting board on the island, Kitchen Aide icemaker (made those perfect little ice cubes for drinks), wine cooler. Our shower had 4 shower heads and was the same size as my walk in closet! Oh yeah, the music played in there as well! A washer and dryer on both floors. The most amazing thing the kids loved, an elevator!! You drove your cars into the 3 car garage on the bottom level, then you could load you stuff into the elevator, go up to the 2nd or 3rd floors. It was a blast!
I haven’t been that relaxed in forever. It was great for our entire family. So, if the generous man that blessed us with this time at the beach, reads this, THANK YOU from the bottom of our hearts!!!!!!
Thursday, September 17, 2009
Sometimes, while in the hospital, I have caught myself saying to my very attentive husband, "They are medical professionals, honey, they know what they are doing." Well, yeah, probably. BUT mistakes happen. We never take our eyes off of what Zoe's nurses and docs do while she is in. Of course, we can't see what goes on in surgeries. We actually have a 'reputation' on the cf floor....as the parents who are "very meticulous about their daughter's care". Oh well.
Anyways, for your info....her site is josieking.org
Monday, September 14, 2009
Thursday, September 10, 2009
After breakfast, treatments, school, the girls and I headed out to lay by the pool, swim a bit, just RELAX.:sun; It was a beautiful day. Around 91, sunny, blue skies. Perfect. BUT....I missed my girlies. Being an adult woman, hanging with kiddos all the time, really makes you appreciate the times when there is another adult woman around to talk to, drink coffee(and wine;)) with.
Anyways, updates around here are......
Caleb was home last weekend for his first pass from the Youth Challenge Academy. Oh, did I miss him. He has totally thrived in the Army environment though!:D He looks terrific! Hair all shaved, had gained 10 lbs. of muscle weight, and seems to have grown in maturity years!!! He will be back the 3rd weekend in October.
Austin is doing awesome in public high school, got his progress report today. He had a 97, 97, 95 and an 83. Not too bad.:) He also joined the wrestling team and seems to love it so far!
Alex has been sick for a few days, started out with a sore throat, stuffy nose, then headache, then cough, now the sore throat is better, just a cough and headache.
He is quarantined to his bedroom. We take him food, water, cold meds, etc....he sleeps and watches movies.:( I think he is on the upside....hope so anyways.
We had an emergency room visit last weekend with Zoe. Not CF related at all. Well, not exactly anyways.;) Zoe has an extreme fear of taking bandages off. Mainly due to PICC bandage changes. Sooo, being the parents that we are, have chosen the taking a band-aid off as a battle NOT to pick. So, we have always literally let her band-aids FALL off. Well, it finally bit us in the....you know what.....her band-aid was bright RED all around it, I took it off to find a horrible, red, indented(literally the exact shape of the band-aid) yucky area. It looked horribly infected to me. So off to the small local ER to see. Nope, just a band-aid reaction from having it on so long. Uggghh. Guess we learned our lesson there.
Other than that, she finished her Bactrim tonight, 4 weeks solid. Her nose finally seems to be clear. She has her ENT appt. next week.
We also did interviews yesterday for the Children's Miracle Network Telethon that a local radio station was doing. Zoe actually talked on the radio! I was totally shocked that she talked! It was sooo cute, she said, "Hi Madison, Sydney and Alex, I love you!!!"
Sunday is our CFF Jacksonville Jaguars Tailgate function. We have been every year since Zoe's diagnosis. This year, Scott HAS to work:( so, just Zoe, one of the older boys, and myself will go. It is a terrific event, we love it!
Anyways, to the pics....they are of Caleb at his YCA, and of my flowers. This is the first year that I have such a wild variety of colors with my hibiscus's. Never have they had such variations. I love them! Enjoy!
Hope ya'll have a terrific weekend....
Take care of you and yours.....
Tuesday, September 8, 2009
Zoe, Sydney and I picked up Terri around noon on Thursday at the Jax. Airport. We headed home, stopping at Taco Bell for lunch. We relaxed around the pool that evening, sipping wine. We cooked blackened Mahi, baby red mashed potatoes w/ rosemary & garlic, and a salad. Then we played games! My son, Dalton, and his lovely wife, Donna were here now also. We had a very fun night!
Next day, Terri, Dalton, Donna, Zoe and myself went to the airport to pickup Mel and Jazz. Everything went very smoothly for them, thank God!
After all were settled in their bedrooms, kind of unpacked, we all relaxed. We had grilled cheeseburgers with all the sides. After 9 at night around my house is considered “adult” time….the humor, jokes and language all change a bit. It became the running thing that we couldn’t say “that” yet….it wasn’t after 9. My oldest daughter, Tara, and her bo, Cecil arrived also. Soooo….we had everyone here! 14 people!! Except for my 17 year old son, Caleb, who is away at Army camp. This first night of everyone together was hilarious. The laughter, games, and drinks flowed until WAAAYYYY too late. Somehow, my son made a comment to his wife that started a laughing episode that lasted for I swear an hour. Our faces, guts, and throats all hurt the next morning because we all had laughed so hard. Ok, guess I’ll have to tell you the comment…..they have nicknamed their small poodle ‘the bush’, because she is so fluffy. Well, she was sitting in my son’s lap, under the table, he looked at his wife, Donna, and said, looking down at his lap, “How do you like my bush??” Tara heard this and about died…..she ???? him about it, then it became known to the whole group at the table about the “bush”. I swear, I have never laughed so much. I don’t think anyone else had either.
Much coffee was needed the next morning. Thank goodness, everyone slept in. Saturday was a day by the pool, cooking alfredo for dinner, then playing another game at night again.
Sunday was bowling for all! That was quite fun also! We had to have 3 lanes. Poor Terri, for some reason, her ball kept getting stuck in the back…she was always standing at the ball holder…waiting for her ball!!! It was a blast though!
Then we headed to our little Mexican rest. For dinner….all 14 of us! It was awesome company, food and margarita’s! Home to get kiddo down……then one more night of board games! Whew! It was so much fun….but I do believe we all were getting tired!
Monday we took Terri to the airport to say our goodbyes. We sure missed her after that….she brings a smile to my face constantly…love you Terri!
Things settled down a bit after Terri, Dalton, Donna, Tara and Cecil all left on Tuesday. We got into a more relaxed, quieter routine. Mel and the kids had a Monopoly game set up for 3 days that they kept going back to. Mel and I sat outside every morning in the lounge chairs sipping French vanilla coffee, quietly chatting and enjoying the outdoors.
Treatments were done in the mornings, Mel in her room, Zoe in hers. I gave Mel a book to read while she was here, considering we don’t have t.v…..it was called “The Smoke Jumper”…she loved it, finished it while here! The kids all got along wonderfully! Jazz, Madison and Alex bonded very easily.
Jazz got to go out on the river in our canoe with Scott and Alex, she caught a shark! She had a terrific time!
We went to the beach one day, just for a couple of hours. It was perfect. Mel stood in the water up to her shins, looked at me and said, “This is intoxicating.” Perfect. Just what I wanted, her to love it.
We rented a golf cart in little ole downtown St. Marys, rode around in it for 4 hours. That was quite an experience. Strange, riding around in town with an open air vehicle, that makes no noise (it was battery operated). Fun!!!
Friday night was date night….for Scott and his 2 ladies…Mel and myself! We introduced Mel to drinking Captain Morgan with ginger ale in gas station coffee cups…..while on our way into Jacksonville….then we introduced her to a true southern tradition….HOT NOW doughnuts at Krispy Kreme! Headed to one of my favorite, cheap things to do on a date……the card section at a large book store. We stood there for about an hour, reading, laughing, singing, you name it….I think Books A Million was very happy when we finally left!
We then went to Bonefish Grill, the rest. That supports CFF all the time, everyone there loves Zoe, they treat us like royalty. There was a hour wait when we got there, but they seat us right away! And they almost never let us pay our bill….they are the sweetest, kindest people, we truly love them!
I think the next few days, we relaxed, swam, laid in the sun, read books, cooked, talked a ton, what a vacation should be!!!
The kids had built tents covering the game room , we dubbed it “tent city”. Alex, Madison, Sydney and Jazz slept in it for several nights! The last night before they left, Mel and I sat up, had a few glasses of wine, and finally had a good night of girl talk! The kids were playing truth or dare….coming out to us often with their ‘dare’….it was quite funny!
This was a couple of weeks in my life that I will never forget. There was much laughter and tears. The day that Mel lost Ellie, was a hard day for us. I’m glad she was here and not alone. CF in all its reality. We cried for Ellie, for Mel, for Zoe, for all of you that have CF in your life....
I hope you enjoy the pictures!
Sunday, August 16, 2009
Here is a link to an article in the Sunday Savannah paper today! http://savannahnow.com/node/767579
The picture is of Sydney, not Zoe though....uggghh. Other than that, it was a pretty decent article the guy wrote.
Take care all,
Wednesday, August 12, 2009
We received a letter from Caleb. He sounds like he is doing fantastic in the Army Academy. They made him squad leader of his squad. It was funny reading how he is responsible for having them alll outside at 5:25 a.m. and also for assigning people to clean the barracks....he said if it isn't done...he is the one that gets in trouble. He finally will realize what it is like to tell other people what they have to do and how it feels when they don't do it. He also went repelling the other day, said it was a blast! He does pts, drills, and school. He did the Army opsticle course and left everyone behind! I felt very proud of him!
Austin is doing great in his second week of public high school. So far he seems to really like it.
Zoe started ballet Monday. She loved it! Sorry all the pics of her in her class are blurry. Rest of the kiddos are all doing good, getting their school done in the morning, then swimming all afternoon!
Scott and I went to our fav. Mexican rest. last night because they were having a Mariachi band. Like I need an excuse to go eat great mexican food and margaritas! It was a blast! They were very entertaining. Also picked up the money they have been raising for the CFF. They collect $1.00 for every rose pin-up. Then they tape them up. They had $170.00 collected! They want more pin-ups and posters of Zoe to put in all the bathrooms. They are such a great bunch of people!
I'm getting soooooooo excited about Mel, Jazz, Terri, Tara, Cecil, Dalton and Donna all getting here next week that I can hardly stand it!! We were discussing the wine status....no bottles for that 4 days....we will be doing the "O box of wine"....or rather BOXES!
Zoe has ENT tomorrow, so I guess when she looks in her nose, she can decide whether the infection she has been fighting the last few weeks needs an antibiotic or not.
Must run make dinner now....take care....
Wednesday, July 29, 2009
Other news..... Caleb has been gone into the Army Youth Challenge Academy for almost 2 weeks now. I miss him. He will be gone for 5 months. I really hope and pray that this will enable him to grow up a bit and be ready for the big real world.
After much thought and tears, after exclusively home schooling for almost 20 years, after my 15 year old pleaded his case, we have decided to allow him to attend public high school. It was a hard decision. The school does seem to be a 'good' school. They have a complete seperate building for the 9th graders (which is what he will be), it is called the 9th grade academy. Hopefully it will all go well.
My son, Dalton, and his wife, Donna, who live in N.J., are coming to visit for the first time since Christmas!! They will be driving down. And to make it even more special, they are coming the weekend that Mel and Jazz are here! My oldest daughter, Tara, and her boyfriend, Cecil, will also be coming that weekend! It will be a crazy, wonderful time! I can hardly wait!
Zoe has had a 'yucky' nose for 2 weeks now. Still just watching it to see if it will go away on it's own.
She got her ballet leotard, tights, shoes and skirt in the mail today. She is soooo excited about starting ballet classes on the 10th. This is the first class of anything she has ever taken. She loves to watch ballet. Of course, I am nervous. The first thing she has ever done outside of her cf world. Being around other girls....I start with all the what if's.......what if they tease her about her throat clearing/coughing/ her nose being congested, her big tummy, her gas, you know..... I know she can't stay protected forever.... Then there is the sickness factor, I'm hoping that parents don't send their girls to ballet class sick. ugghhh. Obviously, I'm thinking WAYYY tooooo much.
Well, I suppose this was long enough...
Take care everyone!!!
Wednesday, July 15, 2009
Received her culture results today.....for the first time in I can't remember when....she cultured....drum rollllllll........NORMAL ORAL FLORA!!!! WOOOOHOOO!! Which explains why she has had such a good couple of months now.
We are busy swimming, doing some school here and there, dentist and ortho appts., literally just enjoying this time of 'wellness'!
Hope you all are having a lovely summer also!
Sunday, June 21, 2009
Madison, Sydney, Zoe cutting their veggies!!1
Zoe is still doing awesome! Yeah!
I hope you all had a very terrific Dad's day and weekend!!
Saturday, June 13, 2009
the carousel that we rode 4 times!!
Thursday, June 4, 2009
Friday, May 22, 2009
Wednesday, May 20, 2009
Scott's dad arrived today, he will be here with us until Monday. He is great to have around, keeps the kids busy playing games, cards, etc.... :)
Tom, Jo, and their 8 lovely children will be over tomorrow on their way home from their Make-A-Wish trip to Disney. (They are blogging friends from Cf.com). They will be having dinner and b-day cake here (one of their son's b-day is tomorrow). We can't wait to meet them all in person!
That is what is happening around here. Take care!
Saturday, May 16, 2009
Friday, May 8, 2009
I did discover Haagen Dazs Icecream though! Did you know that the chocolate peanut butter has 23 grams of fat in just 1/2 cup!! OMG! She LOVES it!!
They don't need to see her until July now. We just have to keep stuffing her.....and pray that her culture comes back clean. Hopefully then we can have a few months break...she needs it.
Thank you all for your thoughts and prayers.....
Monday, May 4, 2009
Zoe made a Mommy's Day Craft
Our team shirts
My sis, Sharonda & neice, Chelsey
Sydney, Dad, Zoe-Home Depot project
Ben&Jerrys-CFF ladies, Austin, Alex,Madison
Nicole(Bonefish Grille) & son
Reece (his first fundraiser!!!:)
Mandy, Rielly, MiKaela, David
(Bonefish for Zoe)
The table at Ben and Jerry’s was great! They had a great turn out all day. It is awesome because we got to talk to practically everyone about CF! We made about $250.00! Met several wonderful families that came to the walk that next Saturday.
There was around 200 or so at the walk. They think they will have made around 55-60 thousand! It was a lot of fun. Zoe doesn’t do the walk, she and I stay and talk to people, oh, and she EATS while everyone else is getting exercise! My sister and her daughter came with some of her co-workers, the friends we have at Bonefish Grille came, families with their kids from the Christian School….it was so nice to see people there to walk for our Zoe!
We have started going bowling on Sunday afternoons as a family (on Sundays it is only 99 cents a game). It has been a blast! Even with Zoe just throwing her ball down at the end, she still ended up yesterday with a score of 83! Yes, bumpers are an AMAZING help!
Zoe’s appt. is Friday. I am very interested to hear what all the docs have to say. Also to see if she has finally gained any weight.
Hope everyone is having a lovely spring!
Wednesday, April 15, 2009
I also was in my favorite local Mexican rest. yesterday, talked to them about selling the pin-ups at the register. They talked about it and said YES!! So, tomorrow I will be dropping off posters I made tonight and the pin-ups. They all just adore Zoe, they even have her card taped to their wall right next to the check out!
As far as Zoe's tests, still waiting. Will let you all know as soon as I know something.
Have a great night!
Wednesday, April 8, 2009
So, her birthday was great! She had a Princess cake and Princess presents. Today she even received a wonderful present from Kaylee and her terrific grandma(Kayleesgrandma)!!!
We got to the CRC (Clinical Research Center) at Wolfson Childrens Hospital (Zoe’s normal hospital) at 8:30 am…she was NPO since 9 pm the night before. I had put the EMLA cream on 4 areas of her arms. The nurse she had (who is in charge of the CRC) was awesome! She was able to get a vein first try! Zoe still had a lot of anxiety before the needle going in….but when she realized it was over and didn’t hurt…she looked up from crying, smiled and said, “So, do I get stickers now???” We all laughed.
Then the blood drawing started. That was a lot of blood. You can see by the pictures how many tubes there was. They used everyone of those. After they got all the blood they needed for all the labs, they drew the first draw for the glucose testing. It is called a ‘fasting’ draw, fasting being because she was NPO since 9 the night before. The nurse put it in the tester, I looked at her, she said, it’s high. Uggghh.
Tomorrow morning Zoe and I have a short meet/greet/ speech at a highschool for fundraising for our walk. Hopefully I can do this gracefully without crying.
Well, I need to go read a book to Zoe and cuddle her into bed…..
Good night all….take care of you and yours………
Tuesday, March 31, 2009
After a long discussion with Pulm., Nutrition, Research, G.I., this is what they have decided to do…….
Pulmonology has ordered:
1. CF Respiratory Screen (much to Zoe’s resp. nurses surprise, Zoe coughed a nice thick, mucousy cough when she went to swab her, so got what she called an awesome “gooby”! Her nurse was so excited to get that from Zoe, she ran it to the lab herself!)
2. Hemoglobin A1C
3. Glucose/insulin tolerance test – 2 hour ( to check for CFRD-Cystic Fibrosis Related Diabetes)
4. Continue on her oral Bactrim for an extra 2 weeks, finish the 2 weeks of inhaled antibiotic, Gentamicin.
G. I. has ordered:
1. Vitamin A Assay
2. Vitamin E Assay
3. Calcifediol (250H Vitamin D-3) Assay
4. CBC, PLT and Diff
5. C-Reactive Protein
6. Hepatic function Panel>1 yr.
7. Prealbumin Assay
8. Tissue Transglutaminase IGA/IGG
9. IGA Immunoglobulin Assay
10. Fecal Fat, Quantitive 48 hour
The big thing was to try to get all this all scheduled at the same time. Thank God, our research specialist, Rena, was there. She is awesome! She was at one of Zoe’s blood draws and saw first hand how hard of a stick she is, and that she turned as white as a sheet, almost fainted.
She pulled some strings, got Zoe her glucose test for 8:30 Tuesday (they are backed up until the end of May)! They also will do an I.V. so, instead of them having to find a vein 3 times for the glucose test, then again for all the other blood work, they will just access the I.V. Thank you Rena, only ONE stick. Also, they will be able to insert a NG tube to give her the glucose syrup if she won’t drink it herself. We knew this might be an issue considering she won’t drink anything except water. I am going to try to use syringes, telling her it is a medicine that she HAS to take, that normally works…..but it is 4 ounces…a lot to put through a syringe.
Also, starting Thursday I have to do a detail food log, exactly how much she eats (measuring everything), what I added to it (butter, cheese, etc…) the exact amount of fat and calories she ate. We do this for 5 days. On the last 2 days (Sunday and Monday) we also have to collect ALL her stools in these containers they gave me and freeze them. I turn them all in ( to a different lab) on Tuesday when we go in for the glucose testing and blood work. Mind you, all these tests on Tuesday, are on her 5 year birthday. Ugghh. Doesn’t CF suck? I think we might tell her birthday is another day. She is still young enough where we can get away with that.
I really appreciate that her doctors are checking all possible causes of no weight gain/weight loss before just immediately putting in a g-tube. If all these tests come out fine, then they said we talk about g-tube.
I have a lot to blog about…..my parents party….going to Mels…..but I am kind of down tonight after todays Dr. appts…..so, thought I would just update on our little Zoe tonight. Please continue to hold her in prayer……thank you from the bottom of our hearts….
Jada & Scott
Tuesday, March 24, 2009
My house is back to its normal status. The kids are all home. My parents and sister have gone back to Tn. It is different around here…we had 5 weeks with just Scott, Zoe and myself. Then a week with all my kids, my parents, my sister & her 3 kids.
The big secret that I couldn’t blog about, was a surprise party that we have been planning for 3 months! My parents read my blog….soooo…I’ve not been able to write about it at all!!
Everything went perfectly. Noelle and I stayed up very late for 4 nights doing a scrap book for them, it turned out beautifully. We also wrote questions like….what was your favorite car….what was your favorite song as a teen….which one of us kids gave you the most “headaches” growing up….which one of us kids was the most accident prone….what was your favorite house….what was your favorite saying your mom and/or dad said….etc…??? We put them in a bowl, then Saturday night we all gathered around them and asked them the ??, it was awesome! We all had a blast, talking and laughing about the past! I am proud to say that I didn’t make the most “headaches” or “accident” ones!!!!
My parents were completely surprised, they really had NO idea about it. Eight out of ten of us kids (with their families) came! I had 40+ people in my house for 2 days! I LOVED it! My little brother and his very lovely, 7 month pregnant wife, flew in Thursday night from Dallas. It was great having them here with us. Having Noelle here and Patrick was so much fun for me, I love having family around. It was sad to see them all leave.
My mom cried for 20 minutes after the initial “surprise-shock”. She hugged everyone forever. Dad just kept saying, “I can’t look at mom, or I’ll start crying too”. It truly was a gathering that they will never forget, nor will I
On another note, our little Zoe is sick. She has an extremely wet, junky cough. She is choking on mucus everytime she coughs. So….for the first time since her sinus surgery (3 months ago), she is on antibiotics. Oral Bactrim and Nebbed Gentamycin. If any of you cf’ers have ever nebbed Gent., you know how HORRIBLE it smells and tastes. Poor Zoe. 2 times a day added on to her other nebs. I feel so bad for her sometimes, having to sit for 2 hours in the morning, then an hour at night. Hopefully this will knock it out quickly.
Then of course, she isn’t eating quite as well, being sick. Her CF and G.I. appts. Are next Tuesday to do her weight check. Just GREAT. She hadn’t gained anything still as of last week before she got sick, so being sick sure isn’t going to help any.
Thank you for keeping her in your thoughts and prayers.
Laundry is calling….take care.
Wednesday, March 18, 2009
The ‘missing’ kids returned safely Friday night! Yeah! They had the best time with their grandparents! My sister, Noelle, and her 3 little girls are staying with us all week. We have had a lot of fun! We ran out to the beach yesterday in hopes of sun, so she could get a couple of pics of her and the girls. It got all cloudy & windy on the way. So we stayed just long enough to get the pics and let the girls pick up some seashells.
Today is our 9th wedding anniversary! Nine years sure can go by fast! Happy Anniversary Honey! I love you forever and always!!
Zoe woke up with a 101 fever this morning….so we are watching that. She had a couple of coughing attacks in Wal-Mart yesterday….uggghhh. If her cough increases then I will be calling her clinic.
If anyone listens to the radio program “The Wall Street Journal This Morning”, tomorrow morning, Thursday, Gordon Deal will be airing a program “The Longest Commute”. Guess who will be in it???Yes, my husband! We have NO idea what Gordon is going to say….just hoping he puts some focus on CF, for the awareness. This is a NATIONWIDE program, so the awareness could be awesome!
Take care of you and yours…..
Tuesday, March 10, 2009
We have some very good friends, who the husband works with I.T. people, tell us...no worries...big companies do this all the time. They are looking for people that might be 'selling' company info. Well, needless to say, Scott doesn't do that. So, for 6 days now, we have been wondering, going stir crazy....does Scott have a job...are we going to be jobless, homeless, insuranceless, etc...
We got the call at 4:15 this afternoon.....it's all FINE. Sure. We go through pure HELL for 6 days....wondering...and it's all FINE. He reports back to work in the morning. Big companies = SCARY.
All I have to say is.....THANK YOU GOD!!!!!!!!!!!! Thank you....the people that did know about thiss...for praying for us. We have a job still.
On another note....the kids get back Friday night! Yeah! We miss them! Zoe REALLY misses them. She needs someone else to play with besides mommy and daddy.
She has started coughing/clearing her throat more in the last couple of days. We will just watch for now....see if it progresses.
Better get some sleep....take care of YOU and YOURS....
Monday, March 2, 2009
Wednesday, February 25, 2009
Friday, February 20, 2009
I knew it was going to be tough without my kids being around.....BUT....this is crazy! (If you missed a few posts ago, my parents kidnapped my 4 kids for 5 weeks).
Pixie before 'grooming'
- ► 2011 (20)
- ► 2010 (20)
- ▼ December (3)
- ► September (8)
- ► May (5)
- ► March (5)