Hi everyone,
I know it has been a while since my last post but we have been crazy busy lately.
We went to both Grandma's on Mother's day...Eleanor had lots of FUN!
Then the next weekend a jewelry show (jewelry by my sister!) at Troy Bank and Trust in Troy, AL. We raised over $500.00 for CF in 4 hours...so excited. Thank you to everyone who gave!!
On Saturday off to Birmingham to see Jennifer on Senior Recognition Sunday...can't beleive she is going to graduate this Thursday!!
Life was hectic but fun and then on Sunday Eleanor got sick. :( She emptied her stomach contents at my mom's house after she had gone to sleep. She was so cute though...all she wanted to do was go back to sleep. Her episodes woke her up three times and all three times she went back to sleep after a pj change and a bed sheet change. She gave Grami a workout!
On Monday we made it home and she seemed to recover and we even went to the beach on Tuesday with Daddy. She had such a blast!!
Wednesday, well, it was a really bad day all around. She acted horribly and wednesday are the days that it is just the two of us all day. Needless to say, when bedtime came I was past ready.
Thursday she woke up with a low grade fever so off to our peds dr it was. She had a sputum culture done after much angst and we didn't really know what was wrong.
This weekend she did pretty good...she had no stamina on Thursday or Friday but when she saw Nanny and Bubs she acted a lot better.
Today I get a call from the doc's office and we have cultured PSUEDOMONAS AGAIN!!! So frustrating does not even begin to express my feelings. We were in the hospital in January for it and it was supposed to stay away! I guess nobody told the PA that. So starting tomorrow we are on TOBI for at least 28 days it may be a month and a half. We are also going to be on the oral antiboitic Cipro for 14 days. TOBI means albuterol and this means five breathing treatments a day with the Cipro twice a day and vest twice a day. UGH!!
The GOOD news is that we have some way to treat the bacteria...the bad news is that she shouldn't have it! I know you all pray for her but we will need lots of prayer over this next month as she is not always happy sitting still to do her treatments now and she is quite ill-tempered because of the PA.
I do have a funny story...
We get home on Monday and Eleanor and I have the following conversation...remember she is not yet 2.5 years old yet.
Eleanor: I want to go bye bye!
Me: Where do you want to go?
Eleanor: I want to go to the grocery store
Me: Why do you want to go to the grocery store?
Eleanor: I want a cookie
Me: You want a cookie, what kind of cookie?
Eleanor: a sprinkle cookie to eat! Yum!
Also after struggling with Eleanor for A WHILE at the doctor's office to let them look at her throat (which we never accomplished) the nurse says okay Eleanor I'm done, can I have a hug? Eleanor looks at her and then gives her a big squeeze and while she is hugging her she says ooooweeee!
Then we go out in the hallway and she walks up to her doc and gives her a hug. She is so sweet! I think she was saying nice to know you but I am leaving now!
One more! This Saturday we had gone outside to draw with chalk and we came inside first then Robert came in and when he came in she looked at him and said," Daddy what are you doing?" Like it was her business what he was fixing to do...
Anyways, sorry for the long post but I wanted to update you since it had been a while.
Coleen
Monday, May 24, 2010
Tuesday, May 18, 2010
Family, friends rally around toddler with cystic fibrosis | Dothan Eagle#comments#comments#comments#comments
Family, friends rally around toddler with cystic fibrosis Dothan Eagle#comments#comments#comments#comments
Eleanor had the priviledge of being the subject of a story for the Dothan Eagle. She was so very precious for the camera man. If you would like to read it click the link above.
Coleen
Eleanor had the priviledge of being the subject of a story for the Dothan Eagle. She was so very precious for the camera man. If you would like to read it click the link above.
Coleen
Tuesday, May 11, 2010
CF Awareness month
May is offically CF Awareness month. This is the time to get the word "out." Tell your family and friends about this disease and about how it affects those who have it. Awareness equals understanding and understanding equals more volunteers to help raise money for a cure to this horrible disease.
We still have a little over a week for our Eleanor's Extravaganza for CF! If you would like to donate $5 for a ticket for our prizes. Please email me at r-cguilford@mchsi.com and I will get the information to you. For those of you who have donated thank you! We are also having a jewelry show in Troy at TB&T this Friday, May 11th from 10 am - 2 pm. If you are in the area come by and see what we have. They would make great graduation presents and summer birthday presents. All, 100%, of the proceeds go directly to the CF Foundation.
More later...Eleanor is waking up!
Coleen
We still have a little over a week for our Eleanor's Extravaganza for CF! If you would like to donate $5 for a ticket for our prizes. Please email me at r-cguilford@mchsi.com and I will get the information to you. For those of you who have donated thank you! We are also having a jewelry show in Troy at TB&T this Friday, May 11th from 10 am - 2 pm. If you are in the area come by and see what we have. They would make great graduation presents and summer birthday presents. All, 100%, of the proceeds go directly to the CF Foundation.
More later...Eleanor is waking up!
Coleen
Saturday, May 1, 2010
Eleanor, drawing, and CF Friends
While at the beach the other day, Eleanor discovered that she can draw in the sand. Today we thought about taking her to the beach...that was before the weather turned out to be so bad. We wanted to get down to the beach just in case this oil does come our way. We are not only concerned about the economic impact but the health impact for our daughter if it does come to our shores in south Walton. Going to the water was not meant to be though.
I bought Eleanor some sidewalk chalk at Michael's on Friday and stocked up on bubble solution as Grami bought her a bubble machine to have so I do not have to constantly blow bubbles when she is out front swinging. Out front we went, bubble machine going and chalk in hand. Eleanor had the biggest time. Our neighbor's kids came over to play in the bubbles with her. She turned our gray porch into a white and yellow piece of art. I took pictures but I have to upload them. I will get them up to let you see her. She was also covered in yellow and white chalk it was a funny sight!
CF and CF Friends
Eleanor is almost done with her TOBI treatment for this 28 day cycle. YEAH! Her cough is back with a vengeance. We are dealing with it and are hoping it will subside shortly. Pray for her cough and that it is only the TOBI and nothing else. I would also like to add three names to your list to pray. Taylor (16), Megan (11), and Lacy (18 months). They all have CF and are dealing with different issues right now. I know that their families would appreciate all the prayer they can get in lifting up their children. It seems like the people with CF in my area have been hit pretty hard of late. So any extra prayers you can send up are appreciated. This disease makes your family grow. Once you met a fellow CF Mom you learn about their children then you want the best for them as well. I hope that makes sense!
Will update with pictures soon.
I do have a quick funny story...
Aunt Ashley got Eleanor a 2.5 tall Elmo doll. Today Eleanor sat him up on Robert and took her food from her kitchen and "fed" Elmo. She would tell him to finish chewing or all done with that. Here Elmo time to have your tomato. She did this for about an hour. Robert and I got some very good laughs.
Coleen
I bought Eleanor some sidewalk chalk at Michael's on Friday and stocked up on bubble solution as Grami bought her a bubble machine to have so I do not have to constantly blow bubbles when she is out front swinging. Out front we went, bubble machine going and chalk in hand. Eleanor had the biggest time. Our neighbor's kids came over to play in the bubbles with her. She turned our gray porch into a white and yellow piece of art. I took pictures but I have to upload them. I will get them up to let you see her. She was also covered in yellow and white chalk it was a funny sight!
CF and CF Friends
Eleanor is almost done with her TOBI treatment for this 28 day cycle. YEAH! Her cough is back with a vengeance. We are dealing with it and are hoping it will subside shortly. Pray for her cough and that it is only the TOBI and nothing else. I would also like to add three names to your list to pray. Taylor (16), Megan (11), and Lacy (18 months). They all have CF and are dealing with different issues right now. I know that their families would appreciate all the prayer they can get in lifting up their children. It seems like the people with CF in my area have been hit pretty hard of late. So any extra prayers you can send up are appreciated. This disease makes your family grow. Once you met a fellow CF Mom you learn about their children then you want the best for them as well. I hope that makes sense!
Will update with pictures soon.
I do have a quick funny story...
Aunt Ashley got Eleanor a 2.5 tall Elmo doll. Today Eleanor sat him up on Robert and took her food from her kitchen and "fed" Elmo. She would tell him to finish chewing or all done with that. Here Elmo time to have your tomato. She did this for about an hour. Robert and I got some very good laughs.
Coleen
Friday, April 23, 2010
Pictures
We went to the beach again today...I have more pics to come. She LOVES the beach!
Also I added flower pictures on my share site at http://www.guilfordfamilyphotos.shutterfly.com/
Coleen
Wednesday, April 21, 2010
Free Fun CF Treatment
Today was a first for us. We went to the beach TWICE! I took Eleanor to walk around 30A and the lake where the beach house is located. It is a 1.5 mile loop during which Eleanor chit chats about the birds and flowers and anything she sees or think she sees like pigs! What an imagination...anyways, we are done with our walk today and I decide let us go see if she will like the sand and beach because last year she didn't really get into the sand.
I carry her down to the water and take off her shoes. The first time her feet get wet she looks like hmmm...so I tell her she is such a big girl that the water feels good...well she starts laughing. With one hand firmly gripping my index finger we walk up the beach so the water can "get" Eleanor's toes. She tries to sit down in it but we are not in proper attire. So we leave...not without a fit, but with a promise to come back.
At 5:30 pm today we go back to the beach dressed in our new Elmo Tankini. First funny thing is she is upset that her belly is not covered by the bathing suit but gets over it quickly. She also doesn't appreciate the sunscreen spray but decides it to is okay especially when mommy does it as well. On the way to the beach I hear, "Going to the Water! Does it feel good to your feet!?! Want to Splash!" We get there and, as it always is in the evening it is breezy as Eleanor calls it. We get to the water and Eleanor is chattering because she is cold but she doesn't want to leave because she wants the water to get her toes. We go from a death grip on my finger and splashing water with one hand to sitting on the shore a few feet from where the waves break splash and throwing sand. Every time a wave would get her she would say want more...and of course another wave would come and she would splash and say it's bathtime!! She had the best time and did not want to leave but we did not have any fits this time. We also took about half the sand with us in her diaper and swimsuit. It was home to take a bath right away. She also went to sleep faster tonight...she was a tired little girl.
I guess I should address the title of my blog this time. A study done on surfers in Australia showed that their lung functions were higher than those CFers who didn't surf. So they now have vials of Hypertonic Saline (basically sterile salt water) for people to inhale to help with their CF. Here is the link if you would like to read a story about it: http://research.unc.edu/endeavors/spr2006/salt_cf.php The salt in the water helps the disconnect that the gene causes and really helps people with CF cough the junk that is in their lungs out and up and lowers infections. So everytime we go to the beach it is a free fun treatment that Eleanor doesn't even know she is getting.
The second time we went when she was sitting in the sea spray she coughed a lot and one time she coughed twice really loud and hard she looked at me and said,"OH excuse me!" It was precious. She was a precious sight.
Thank you Lord for your beautiful creation that we miss so much and do not enjoy because "we have to get things done." Thank you for Eleanor and her precious disposition. She makes me proud to be a mommy and proud that she can enjoy what You have given us and is in our back yard.
Coleen
I carry her down to the water and take off her shoes. The first time her feet get wet she looks like hmmm...so I tell her she is such a big girl that the water feels good...well she starts laughing. With one hand firmly gripping my index finger we walk up the beach so the water can "get" Eleanor's toes. She tries to sit down in it but we are not in proper attire. So we leave...not without a fit, but with a promise to come back.
At 5:30 pm today we go back to the beach dressed in our new Elmo Tankini. First funny thing is she is upset that her belly is not covered by the bathing suit but gets over it quickly. She also doesn't appreciate the sunscreen spray but decides it to is okay especially when mommy does it as well. On the way to the beach I hear, "Going to the Water! Does it feel good to your feet!?! Want to Splash!" We get there and, as it always is in the evening it is breezy as Eleanor calls it. We get to the water and Eleanor is chattering because she is cold but she doesn't want to leave because she wants the water to get her toes. We go from a death grip on my finger and splashing water with one hand to sitting on the shore a few feet from where the waves break splash and throwing sand. Every time a wave would get her she would say want more...and of course another wave would come and she would splash and say it's bathtime!! She had the best time and did not want to leave but we did not have any fits this time. We also took about half the sand with us in her diaper and swimsuit. It was home to take a bath right away. She also went to sleep faster tonight...she was a tired little girl.
I guess I should address the title of my blog this time. A study done on surfers in Australia showed that their lung functions were higher than those CFers who didn't surf. So they now have vials of Hypertonic Saline (basically sterile salt water) for people to inhale to help with their CF. Here is the link if you would like to read a story about it: http://research.unc.edu/endeavors/spr2006/salt_cf.php The salt in the water helps the disconnect that the gene causes and really helps people with CF cough the junk that is in their lungs out and up and lowers infections. So everytime we go to the beach it is a free fun treatment that Eleanor doesn't even know she is getting.
The second time we went when she was sitting in the sea spray she coughed a lot and one time she coughed twice really loud and hard she looked at me and said,"OH excuse me!" It was precious. She was a precious sight.
Thank you Lord for your beautiful creation that we miss so much and do not enjoy because "we have to get things done." Thank you for Eleanor and her precious disposition. She makes me proud to be a mommy and proud that she can enjoy what You have given us and is in our back yard.
Coleen
Sunday, April 18, 2010
Funny Story
Eleanor has been quite the card today. We were eating supper and I needed to wash the dishes (because our dishwasher is broken) and so I put on those gloves to protect my poor hands so they won't dry out and Eleanor see them and starts whining. She says, "Mommy going to clean clean." At first Robert and I thought that she was talking about me cleaning the dishes but then she says,"Clean, Clean and turn turn." So now we realize that she is remembering me doing her IV meds over two months ago! She has too good of a memory. So we assured her that mommy was just cleaning the dishes and that Eleanor did not have to have any medicine.
She has also started saying some funny things like she is playing with the Wonder Pets sticker and picks up the Lenny sticker and says, "Is this Lenny...it is Lenny, I guess." Who knows where the I guess comes from. Or she will say, "Want to watch the Wonder pets...okay you can watch the Wonder Pets." She asks the questions and then answers them herself. It is funny listening to her carry on a conversation with herself.
We were watching a Little Einsteins episode tonight that has the music from the Flight of the Bumblebee on it. While the music plays they sing, Flubadubaduba, flubadubadubaduba and shake their hands and head and then the whole body. So Robert and I are watching her and she is shaking singing the song. It was hilarious! Probably funnier in person than on here but I thought I would share.
Hope everyone has had a great weekend.
Coleen
She has also started saying some funny things like she is playing with the Wonder Pets sticker and picks up the Lenny sticker and says, "Is this Lenny...it is Lenny, I guess." Who knows where the I guess comes from. Or she will say, "Want to watch the Wonder pets...okay you can watch the Wonder Pets." She asks the questions and then answers them herself. It is funny listening to her carry on a conversation with herself.
We were watching a Little Einsteins episode tonight that has the music from the Flight of the Bumblebee on it. While the music plays they sing, Flubadubaduba, flubadubadubaduba and shake their hands and head and then the whole body. So Robert and I are watching her and she is shaking singing the song. It was hilarious! Probably funnier in person than on here but I thought I would share.
Hope everyone has had a great weekend.
Coleen
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