Ashleigh Gideon
- November 2009 (3)
- October 2009 (1)
- May 2009 (1)
- March 2009 (4)
- February 2009 (1)
- January 2009 (2)
- December 2008 (3)
- November 2008 (2)
Most Recent
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Tue, Nov 17, 2009 2:13 PM
Ashleigh officially has asthma. She went to clinic on Wednesday and did her PFT's (Pulmonary Function Test) first thing and the results were very low at 94. Her usual results are at 118. So we decided to give her another breathing treatment then do the PFT's again. The results went up to 112 after the treatment, which was great! But, because she was so low after her first test it was obvious to the doctor that she was working up to an asthma attack.
So right now we are working on finding the triggers for the asthma. Personally I think it is ragweed and everything else that is stirring up outside. She loves being outside!
Besides all that fun, she had a culture done to determine if anything is growing in her airways and lungs. Got the call with those results yesterday...she has moderate growth of Staph and light growth of Pseudomonas. We have to put her back on Tobi for 28 days and also taking Cipro again. They tweaked some of her current meds to higher doses too.
As of right now she is feeling good. Just some light congestion and a cough here and there. Nothing serious. Ash goes back to the doctor on December 9 for another culture. We are gonna get rid of this crap! Again!!
Love you all,
ChristieComments:Aunt Kelly: Be strong sweetie! I love you! You can get through this and fight this again. I believe in you <3 send my love to mommy and your sisters for me!Amy: Well she will be strong and fight it. I know her situation is different but you of kids "outgrowing" so much of this crap in their years. Maybe she will too! I have high hopes! Hugs!!!Add a comment:
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Sun, Nov 8, 2009 12:10 PM
I'm asking everyone to please pray for the Owens family.
Gavin will be going home to be with the Lord shortly. He will be an angel just like Ally and will watch over his family. Please pray that peace be with him and his family during this tough time.
If you would like to read more about this beautiful little boy and his amazing family please click on the link at the bottom of the home page.
Love to you all,
ChristieComments:Cindy: ^Angel Gavin^ is know playing with ^ Angel Ally^....no more pain!
He is running and playing like every little boy should be doing!!
Love you Ally and Gavin...to the moon and back :(Add a comment:
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Mon, Nov 2, 2009 1:43 PM
Back in June, Ashleigh's doctor recommended that she see a GI doctor, to see why she is having ashtma attacks. Dr. Rogers thought that maybe her attacks were coming from acid reflux staying too long in her esophagus. Apparently, this is common in CF patients.
Ashleigh started having these attacks a few days after her last Bronch and Picc line. My first thought was that she may be starting to have an allergic reaction to the antibiotics going in through her line or the Bronch caused some irritation. But she had these antibiotics before and also has had many Bronchs, why reacting now?
So the GI doctor scheduled to have a 24 hour PH Probe done on Oct 15. A PH Probe is a thin plastic tube with a sensor on the tip that is placed through the nose and goes down into your esophagus to measure how acidic the area is. It is connected to a portable machine that records any events (coughing, eating, laying down, etc) that may trigger acid. It also measures how long the acid was in the esophagus.
We got the results back last week and the doctor said that Ashleigh's asthma attacks are NOT from acid reflux. Although she had over 150 episodes of acid reflux in her esophagus, they each lasted less than 5 minutes, which is very good for a CF patient. He said usually in a person with CF, the acid will stay in the esophagus for over 30 minutes, therefore causing an asthma attack. Good to hear!! He also proceeded to tell me that Ashleigh is the healthiest CF patient he has ever saw. (and he works with adults and children!)I was so happy to hear that. I guess that means that we are doing something right with all these meds!
So, what is causing the attacks? I'm still going to go with my first instinct and say it was the Bronch and/or antibiotics. She hasn't had a severe attack since a week or so after she got her Picc line out.
Ash's next clinic appt is Nov 11...I hope to find out before her next "tune up". So we can determine if we need to change her antibiotics.
I hope you all had a Happy Halloween and are enjoying the Fall weather. Love you all!Comments:Wilson: Wonderful!nina: i had instant tears as soon as i read that the doc said she's the healthiest cf patient he's seen! that's a really encouraging thing to hear, and you do an excellent job sister! love, misses, and kisses!Amy: Well maybe she will be the break through that CF needs to have. She seems strong and has a great nurse to coach her! Way to go girls!!!Pop pop: Mother knows best. Good to hear she is so healthy.Aunt Kelly: <3333 keep these great updates coming!!! love you ashleigh! and make sure to send all my love to your sisters and you mommy sweetie! <333Add a comment:
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Tue, Oct 20, 2009 4:32 PM
No news is good news! We've had a great summer and so far a great school year. Ashleigh is loving Kindergarten and her teacher, Mrs. Whipple. She is such a smart little girl. I was worried about her because she missed so much Preschool due to illness, but she is catching on so fast, putting my worries at ease.
Ash started Ballet and Tap in August. She goes every Tuesday, for an hour, until June. It's great exercise for her and boy does it wear her out!! She can't wait to go back every week. One of these days I'll get some pics of her dancing. For some reason they don't let parents watch the kids dance.
As far as her health goes, she has been feeling great. We had a scare a couple weeks ago...both Taylor and Elena had respiratory infections for a week, and in the same week, Brian had the Swine flu. So Ashleigh spent a few days with her Grandmother (Brian's Mom) to keep her away from all the sickness. It worked keeping her away, along with putting her back on Tamiflu for 10 days. Everyone is well now and I hope to keep it that way. We may be OCD about washing our hands, but at least we are not getting sick!
I must say that Taylor and Elena have been amazing through this journey we've been on. They have been so understanding and patient with me. I couldn't ask for better girls. Taylor is in 5th grade now and is in the TAG (Talented & Gifted) program and in Advanced Math. She is also learning to play the Piano.
Elena is in 2nd grade...loves to read to everyone! She also takes Ballet, Tap and Jazz. And she is already into boys...UGH!!
Ashleigh's next clinic appointment is Nov 11. I am praying that her PFT's (Pulmonary Function Test) will be outstanding and that her cultures come back clear. It's amazing to me with all the sickness around her every day, she is doing awesome. She is a miracle! (and a pain in my behind sometimes...lol)
Love to all and thank you for your prayers:)Comments:Timeka Leach: It's so nice to hear everything is going so well. I saw Ashleigh at Dollywood and she looks beautiful. I'm sure she hated having to spend time with her grandmom, Ha Ha. Good luck with everything.(Grandma) Terri: So glad to hear the good news and that everyone is doing well. Taylor, Elena and Ashleigh all make us so proud. They are beautiful, bright and caring young girls. Good luck with the piano Taylor - you know what they say- practice, practice, practice. You can play us something next time we're together. Elena and Ash, keep those toes tapping, or moving, or pointing! Send us video if you can. I know what you mean about keeping the Mom's out though. I guess the girls stop listening to the teacher and start showing the Moms all their moves. Well I hope your area, or school, or home is now free of the flu (swine or not) for this year. We are so glad to hear that Ash was able to avoid it all so far. Love and prayers to you all.Amy: Some times the life lessons come from the smallest people! I am so glad that your girls have been the light that I think every mother deserves. It is hard work being a mom, this I have learned, and at the end of the day when we see their little faces fast asleep...that is what it is all about! So glad that you have good news to report! Hugs to you all!Aunt Kelly: Oh my goodness!!!! i cannot tell you how happy i am to read this update! =D im so glad to know that everything is still going well! and to know that i have two marvelous nieces that are following in my dancing footsteps!!!!!! =) and i am so proud of taylor! she seems like she is growing into such an amazing intelligent young lady! and oh boy do you have your hands full with boy chasing! ahaha jsut wait until the teen years! I'll keep ashleigh and all of you in my prayers. Miss you, love you, and i really really really hope to see you soon! send my love to all <3333Add a comment:
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Wed, May 13, 2009 9:38 AM
Say it isn't so! We've had rain, for what it seems like, 2 weeks straight. Tornado watches, tornado warnings, but nothing came to Knoxville. Thank God! For the last couple days it's been mild and sunny. Just beautiful weather.
I'm sure you all are wanting an update on Ashleigh. She had a throat culture last Wednesday and results came back this Monday that she had some Staph growth in her throat. It's a small amount of growth so they are not going to treat her right now. Shew!
From what I gather, Staph is alittle different in CF patients than everyone else. The mucus in a CF patients lungs and airways is thick and sticky unlike yours or mine. So anything that patient comes in contact with, such as Staph or Pseudomonas, attaches itself to that mucus and unfortunately colonizes. It's really hard to get rid of. Basically like that Mucinex commercial, where the mucus comes in and sets up shop. That's what it does to a CF patient, but most of the time it doesn't leave.
The throat culture does not tell us what is actually growing in her lungs, so we will have to wait for her next Bronch and hope for the best.
Ashleigh is not showing any kind of sickness at all on the outside, which is good. As of right now, she is on a inhaled antibiotic on and off. It's 28 days on, then 28 days off.
That's all the news for now, other than we will be attending the CF walk on this Saturday at Victor Ashe Park in Knoxville. It's called Great Strides and registration is at 9 am for anyone wanting to attend last minute. If you want to make a donation to the CF Foundation/Great Strides Walk go to cff.org and click on Great Strides. If you would like to donate to our team, I am registered as a Team Leader or type in our team name which is A Breath for Ashleigh.
I hope to see alot of you there!
Love,
ChristieComments:Amy Bowman: It always amazes me how strong little ones can be. Go Ashleigh!!! Good luck on the walk! I am always sending happy, positive thoughts your way!Add a comment:
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Thu, Mar 19, 2009 9:29 PM
We got discharged today from the hospital!! It's always a good feeling to be sent home. I wanted to take a nurse with me, because the thought of me putting IV antibiotics in Ash's line 3 times a day scares the crap out of me...but we all have to do things we don't like. I'm sure the trash men are going to think we are "users" with all the syringes in the trash.
Ash is doing really well. She seems to have alot more energy. If it's possible to have too much energy..well that would be her. But i'll take it!!
This will be a tedious journey these next two weeks, but I expect some good results from it. This is as aggressive as it gets. And my hopes are high. Picc line removal will be on April 2nd. I will keep everyone updated.
Also I have a video:)...I will upload it over the weekend.
Thank you for all your prayers.
Love to all,
ChristieComments:Timeka Leach: Hey Girl,
Were you at ETCH? What floor do they put you on, I bet it's the 3rd, since that's were your clinic is. We were there on Tuesday at Clinic. Sounds like you are doing a great job. I am so sorry you even have to go through this. Praying for you daily, and if you need anything let us know.
TimekaAmy: If Anyone can do it, you can Christie! Glad that she has energy and is a happy little girl despite the situation. Big hugs!Judy B: I'm so happy to hear that Ash is doing so well! Now I'm jealous, you girls get to play Barbies a lot! Take care and I'm keeping your whole family in my positive thoughts and prayers. Love, JudyBeth Reinert: Glad to hear she got to come home early! The story about her Valentine's Day fundraiser at Keystone Firehouse was on Comcast Channel 22 tonight at 6pm on Boyertown Live. If you didn't get to see it, it will be on again next Thursday at 6pm and it's on demand on our website. Just go to www.wzartv.com and click on the video window to your right to see the show. Good luck with everything!Add a comment:
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Tue, Mar 17, 2009 8:56 PM
I wanted to let everyone know that Ash is doing good. She is settled into her room. Her picc line is in and they are pumping antibiotics in her as we speak.
Her doctor told me this afternoon that there is a low level of pseudomonas in her airways and a moderate level of a staph infection. Not good but we are lucky it is not worse. We will be in here til Friday. So I look forward to alot of coloring and painting and playing barbies. Maybe I'll be lucky enough to get another video of her singing again for you. Any requests?? Miley? Hannah?? Rihanna??? Gabriella??? ABBA?? I'll surprise you all.
Love ya!
Christie
Happy St. Patty's Day!!Comments:nina: i could go for some "honey honey".....hope you get on ellen!!! miss you soooo much! i wish i was there again so we could walk on the frail....xoxoAmy: Hey brave little girl! You and mommy have some nice alone time together warming your pipes for American Idol!Pop Pop: Tell her Pop Pop is watching O-O that will worry her ;-)Cindy: Thinking of U......Let the show begin!! A new video sounds Great:)
Ashleigh is a "Little Star" no matter what she sings!!
Our Prayers are with you.Aunt Kelly: ahah I know i personally would love to hear Howdown Throwdown by hannah! aha or maybe If we were a movie by her too. =) hope everything is going well. I'll keep in touch. My love to you Christie, and Ashleigh and all the girls and Brian. Missing you <3gRANpa: Christie, Glad you're both settled in. I hope you are alright yourself. Let's pray that these antibiotics RID these infections. Cant wait to see another singing video.....How about 'Take A Bow' by Rihanna? Love you all, gRANpaAdd a comment:
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Mon, Mar 16, 2009 8:11 PM
I just wanted to give everyone a quick update on Ashleigh.
We went to the Pulmonary Office this morning at 8am to get the results of Ash's biopsies and get her Picc line put in today. We got there and apparently there wasn't even an appointment made for her Picc line and they didn't have the results. But we didn't find this out til 9:30am. UGH!
Have I told you the funniest story yet of how there is another Ashleigh Gideon in Knoxville, (but she spells it Ashley and is 15 years old) and on Thursday when my Ashleigh was scheduled for a Bronchoscopy, they acidentally scheduled the other Ashley. Boy were they amazed when a 5 year old showed up!
Anyway, I got a call this afternoon from the Pulmonary office saying that Ashleigh still has Pseudomonas and Staph in her lungs. I kind of knew she still had it, but was hoping for the best. Also she is definately scheduled for a Picc line tomorrow at 2pm. Let's just hope they have the right Ashleigh this time.
Love,
ChristieComments:Amy: I will be thinking of that brave little one! Hope you are feeling better too! Sending more hugs!Cindy Heintz: Hope things go better.....keeping you in our Heart, Thoughts and Prayers Always :)Add a comment:
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Sat, Mar 14, 2009 10:09 AM
Obviously it's been a busy, busy month since I am just now updating Ashleigh's page.
The 1st Angel Ally benefit that the Heintz family had for Ashleigh was a great success. We were able to pay off 14 medical bills with the money that was raised. As you all know, paying off a bill is always a big relief. Besides that we all had a blast! It was so nice to see my friends and my whole family at one place. Although Ashleigh was very tired, she told me...."that was the best Valentine's party ever Mommy." When we got in the car to leave, she was asleep before we left the parking lot.
Thank you Shane and Jill for everything you did for Ashleigh. Like I said before, and I will say it again, you and your family will always be my angels.
On that Tuesday after the Benefit, I had gotten a call from Ash's doctor saying she had a Staph infection in her lungs. So they wanted me to extend her antibiotic(Cipro) she was already taking. So on top of the Pseudomonas she has, she now has Staph. Ugh!
Regardless of the bad news we had such a good time visiting our family and friends in Pa. It was a short trip, but always a good one. Too bad Ashleigh's sisters couldn't come. Next time I hope!
Since then, I had a Hysterectomy on March 4. I am still recovering from that. Getting stronger everyday. My Grandmother (my Mom's Mom) passed away March 10. She is in a better place now, and will be laid to rest on Monday, March 16. We love you Gram and miss you.
On this past Thursday, March 12, Ashleigh went in the hospital for another Bronchoscopy. We found that her left lung is covered in mucus and right lung has alittle amount of mucus. We are just waiting on biopsy results to come back from that, which we will have on Monday. Ashleigh will be admitted in East Tennessee Childrens Hospital also on Monday for a picc line for IV antibiotics. We should just stay there for a few days then be sent home to finish the 2 weeks of IV. Hopefully!
My hope is there is no more Pseudomonas and Staph in her lungs. I know that this is a long shot, but I believe in miracles. I just cant believe that her lungs had gotten that progressively worse in 3 months.
Thank you everyone for all your prayers for Ash. Please continue to pray for her during this tough time. She doesn't really know what is going on inside her little body, but she knows to fight it. Begone yucky stuff!!
Love you all,
ChristieComments:gRANpa: Ash, I'm glad you had a blast Valentines Night, I did too. It was fun to see and talk to everyone again. Hope you make those darn bugs go away soon. Christie, glad that you're feeling stronger every day....that is important. Very sorry to hear about your Grandmother, she was a very good hearted Lady. God Bless her......Amy: Glad that you had some good family time. That is priceless! Sending big hugs to all of you!Karen Owens: Praying those darn bugs go away!!!
www.gavinowens.blogspot.comAdd a comment:
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Fri, Feb 6, 2009 9:45 PM
Where O where do I start?
The good news is, Ashleigh and I are so excited to come home for a few days to see our family and friends. We could really use some cheering up!
Ashleigh doesn't really understand what is happening on Feb 14 with the Angel Ally Benefit. She is still very excited. Ash even has an outfit and shoes picked out. I'm sure she has her purse and makeup too! She is such a girl.
The not so good news is that Ashleigh will be going in the hospital March 16-20. Again she will be getting a Picc line in with IV antibiotics for 2 weeks. She will come home with the Picc line after the first couple days in the hospital, so we can do the remainder of her IV antibiotics at home.
This was my decision. The doctor asked me what I wanted to do. It's really complicated to explain, but I wanted to do the most aggressive approach to getting rid of this nasty bacteria (Pseudomonas) that is growing in her airways. I want it out! I want it out now!!
So the last couple weeks we've been dealing with daily nose bleeds. Sometimes 2 or 3 times a day. She has had a fever, but it went down after a couple days. Today, her fever is back. Ashleigh has the worst cough I have heard come out of her mouth since May. She says, "It hurts so bad, Mommy". So what do I do? I give her another antibiotic, and pray that it goes away.
I've got to say, she is alot stronger than I am. I know some of you have gone through this, so I obviously don't have to tell you how hard this is, but it chips away at me everyday. I give you all so much credit.
Anyway, I have other good news. My friend Nicole Workman has put together a benefit for Ashleigh also. This was such an impulse thing, but she is awesome. She has put this together in less than 2 weeks. It is called "All Heart" shopping extravaganza. Nicole is a consultant with Fifth Avenue Collection jewelry. And we are having the benefit tomorrow from 2-4. If Ashleigh feels better I hope to bring her. So many people would love to meet her.
So we have some really good, exciting things going on this month. Thank you everyone for all your thoughts and especially all your prayers. I know we can get rid of this big bad bacteria. We just have to take it one day at a time.
Love,
ChristieComments:Denise & Mark Smith: Stay brave. We love you.Karen Owens: Praying for you all! You can do it -- hang in there.Cindy Heintz: Ashleigh can't wait to see you Feb.14.......Go away nasty bacteria!
Hang in there Christie...we know it's not easy :( Keeping you ALWAYS in thoughts and Prayers.
Love to All :)Amy: Sending love your way!!!!Pop Pop: Begone wicked bacteria......begone!Add a comment:
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