Welcome to the life of Eleanor Guilford! She is a sassy, cute three year old who loves to run, read, and ramble on about anything...did we mention she just happens to have CF? Follow our struggles, triumphs and everyday lulls...
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.
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.
This is what Eleanor looks like after smelling the flowers!
I thought I would share what my daughter looked like after she insisted on smelling the flowers in our yard! As I was taking the picture she was saying I see daddy! I guess she thought he was in the camera.
We are kicking our fundraising into high gear. Our team is holding a drawing and there are many prizes but the big ones are six different vacations to one of the Resorts at Oaseas Resorts in Panama City Beach and South Walton. I will have a flyer to post soon. We are printing the tickets now. Each ticket is $5.00 and if you would like to buy one email me email@example.com. All proceeds go directly to the CF Foundation and are tax deductible.
Also, I have some funny stories about Eleanor...
We have started our TOBI routine again and she is being such a big girl she is actually sitting down and letting me strap the mask to her head and watching a show. She is just precious with it!!
The other night we were eating and Robert accidentally knocked a small vase over spilling some water. As soon as he it did it we heard, "OH Man!" So now you know what we say at our house when we make mistakes. Robert and I couldn't help but laugh.
She loves to eat fruit and I was feeding her strawberries, pineapple, and kiwi. She kept asking for more of eat but when she got to the Kiwi she said, "I want more gooey." Robert was chuckling because that is how he would describe it. "Gooey is good," was the next thing we heard. All the things they say.
She is continuing to do well with a very little cough that is due to the medicine. She is coming off her RSV shots for the year and is getting a little stuffy so I spray her nose with that saline mist bottle to help her. You would think you were giving her candy or a cookie because when I say time to spray your nose she gets all excited and runs to her pink chair. Then, she just sits there while I spray her nose. Twice in each nostril and then she usually asks me to do it again. How funny!
Pray that she continues on her TOBI cycle with only a little cough and hoarse voice. Thanks for all the support and prayers we feel them everyday. I especially felt them yesterday!
Robert and I made the decision to change Eleanor's enzymes because we were always having bad poops when we got to the bottom of the container. So we changed from Creon to Zenpep. This past Saturday Eleanor had the 6 BM's and I could not take it anymore so on Sunday morning we swapped back. As I have told you that was a bad idea.
So now that we have swapped back to the Zenpep things are finally starting to come around. Eleanor had been getting up at 6:45 am. (I know this sounds normal but not for Eleanor) The combination of the lack of sleep and her body getting used to the new enzymes was quite a trying time for us. Today we seem to be mostly over the hump...she slept until 8 this morning and has had two almost normal BM's. We are hoping that this change will be for the best. Please keep praying that these enzymes will be more effective than the Creon and be consistenly effective to help her to continue to gain weight.
We were in Publix, yes I go there almost everyday, and we were walking up the isle when she saw an older man and said, "Hi, Mr Noodle!!" (Mr. Noodle is a man on Elmo's world) The man looked at us like what?!? It was pretty funny, at least to me it was.
Today after coming back from Publix I had gotten the groceries out of the car and was about to get Eleanor out when she said,"Help! Fix my arm." Her arm had an impression from the seat belt on it. I told her it was ok and it would go away. She said,"Want mommy to kiss it!" So I kissed her arm to "Make it feel better" and then she looked at me and said, " I love you Mommy!" I wanted to squeeze her. She is the cutest thing. I love it when they are expressing their feelings...well most of the time!
Easter suffering first then everlasting Joy...
To receive the joy of Easter Sudnay we must go through the pain and sacrifice of Good Friday...
"At the sixth hour darkness cam eover the whole land until the ninth hour. And at the ninth hour Jesus cried out in a loud voice, "Eloi, Eloi, lama sabachthani?" -- which means, "My God, my God, why have you forsaken me?"
When some of those standing near heard this, they said, "Listen he's calling Elijah." One man filled a sponge with wine vinegar, put it on a stick, and offered it to Jesus to drink. "Now leave him alone. Let's see if Elijah comes to take him down," he said.
With a loud cry, Jesus breathed his last. - Mark 15:33-37
He is RISEN!!! He is RISEN INDEED!
"Don't be alarmed," he said. "You are looking for Jesus the Nazarene, who was crucified. He has Risen! He is not here. See the place where they laid him. - Mark 16:6
I hope everyone has a great Easter Sunday celebrating the Risen Lord and his sacrifice for our sins.
My name is Coleen. Mommy to Eleanor and Thomas. I have a loving supportive husband named Robert. We live in Lower Alabama. My full-time job is Eleanor who is a spunky, adorable four year old. She just happens to have CF. I started this blog after our first hospital stay to help everyone keep up with our lives and happening.