We are offically on Cipro! Yea and boo! So happy we can get it in her body and get the Staph infection out. Boo that her tummy has already started hurting. We are doing probiotics to help her but just pray that they work for her throughout this 21 day regimen we are on.
Eleanor didn't take a nap today or yesterday and it seems to have caught up with her. I am pretty sure that those of you who know me know that I really like her to take a nap when she is not having trouble with anything. She just acts better because she is more rested. I KNOW, I know she is four but her body is different than most four year olds. Now that she is fighting this infection in her lungs she seems to be more tired. Ever since she started the Cipro her cough seems to have gotten worse and she just seems to be a little out of sorts. All of that to say that two days of no napping means a tired, ill little girl.
Since she didn't take her nap today I announced that she would go to bed early. As any of you CF Mama's know out there that can be quite an undertaking! She normally goes to bed around 9 - 930. Tonight she was in bed at 815. I was quite sure we would have some moments where she would come out of her room with the normal excuses as to why she could not go to sleep. However, she went straight to sleep. Not ONE peep from her! This tells me how tired she was. She rarely does this and tells me just how much of a toll her CF is taking on her right now.
Please pray for her body to rest and repair itself while she is asleep and that she will take her naps so she can feel normal. I pray that she wakes up tomorrow morning and this good nights rest helps her to feel rested and great in the morning.
Much Love,
Coleen
Showing posts with label treatments. Show all posts
Showing posts with label treatments. Show all posts
Thursday, March 15, 2012
Wednesday, October 20, 2010
Pumpkin patch and TOBI
Today we went to a pumpkin patch with our some of our friends. Eleanor had a blast! I will upload some pictures so you can see the joy on her face. We have been busy lately going to football games, and other events so I have not had much time to blog.
We have been on our TOBI and it seems to be effecting her more this time than last time. She wakes up with a raspy voice in the morning and seems to be coughing more. It is a good and bad thing for me. This is what the TOBI is supposed to be doing but in the back my mind I keep thinking did she have something? Did I miss it?
She is so active now and we are finally able to get back outside so we have definately been exposed to more germs but we cannot live in a bubble. I cannot keep her locked inside either. To see the joy she experiences when we go to the park and play with her friends or just go outside to swing. Words cannot describe it. So, I am telling myself if she did have something the TOBI is just doing its job and getting rid of it.
I will try to post the pictures of the pumpkin patch tomorrow.
Coleen
We have been on our TOBI and it seems to be effecting her more this time than last time. She wakes up with a raspy voice in the morning and seems to be coughing more. It is a good and bad thing for me. This is what the TOBI is supposed to be doing but in the back my mind I keep thinking did she have something? Did I miss it?
She is so active now and we are finally able to get back outside so we have definately been exposed to more germs but we cannot live in a bubble. I cannot keep her locked inside either. To see the joy she experiences when we go to the park and play with her friends or just go outside to swing. Words cannot describe it. So, I am telling myself if she did have something the TOBI is just doing its job and getting rid of it.
I will try to post the pictures of the pumpkin patch tomorrow.
Coleen
Friday, September 17, 2010
Bad News...
It has been a week since we heard the bad news. We went in last Thursday for our 8 week appointment and went in for our ultrasound and there was no baby there. The little circle and beating heart we saw at 6.5 weeks had gone. We have the best doctor she gave us all the details and explained the process. I went in last Friday for my DNC. I am almost physically recovered from the procedure and am very thankful.
I know that God made my body and my body knew that there was something wrong with my baby. It is better to happen now than in a few months. I did not get the chance to know this baby but I know that there is a reason and am at peace. The last week has been a little emotional but Robert and I are doing okay. We have definitely felt the prayers that are being said on our behalf and truly appreciate them. I have felt the Lord's mercy and grace surround me and cannot put into words how much I am thankful for a great family, church family, and friends. I cannot put into words everything that I have been through but I can tell you that this struggle we have gone through has continued to bring me closer to the Lord.
Eleanor is doing well...we finished her TOBI last Thursday. What a joy she has been to see and spend time with playing, reading, and just having fun.
Thank you for the prayers we really appreciate it.
Coleen, Robert and Eleanor
I know that God made my body and my body knew that there was something wrong with my baby. It is better to happen now than in a few months. I did not get the chance to know this baby but I know that there is a reason and am at peace. The last week has been a little emotional but Robert and I are doing okay. We have definitely felt the prayers that are being said on our behalf and truly appreciate them. I have felt the Lord's mercy and grace surround me and cannot put into words how much I am thankful for a great family, church family, and friends. I cannot put into words everything that I have been through but I can tell you that this struggle we have gone through has continued to bring me closer to the Lord.
Eleanor is doing well...we finished her TOBI last Thursday. What a joy she has been to see and spend time with playing, reading, and just having fun.
Thank you for the prayers we really appreciate it.
Coleen, Robert and Eleanor
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, February 28, 2010
9 times, 9 times, it is 9 times
Hey everyone!
Well the Guilford family has been a busy one. I told you we are up to nine treatments a day. This is how our day goes. Up between 8-830am then vest and albuterol (or "abby") as Eleanor likes to call it. Then we eat breakfast. This has been a struggle. She used to drink a cup of whole milk with Carnation Instant Breakfast and Heavy Cream but now she is completely refusing it. I can get her to drink maybe a 1/4 cup of chocolate milk but that is it. This is very stressful for me as I do not like her not having what she needs and the battles have caused much stress. :( After breakfast I let her run around then we do the TOBI it last about 20 minutes. Next is our first saline nose rinse.
Then we have a break for a while. She gets to play and then we eat lunch and nap time. After nap time she gets to do her vest and "abby" again. Then a snack if she gets up in time. Now she gets to play while I figure out what is for supper. I have not done well cooking of late. There seems to be no time between her treatments and my work for the church next thing I know it is 445 and I have nothing ready to fix.
Robert has been great helping with supper...he calls and says he is bringing something home. This past week the grandparents were all down so it helped me have a break. Anyway, I was rambling, after supper we do her "abby" around 730 then bath and pulmozyme, vest, and TOBI. Final treatment of the day is the saline nose rinse. At this point it is usually 9 and we have a sleepy girl. Funny thing is we put her in bed and she will sometimes talk until 10-1030.
I guess that is why I have not found time to update you. But I wanted to get on this morning to let you know I have not forgotten about the blog. Robert and I are tag teaming church...I went last week and he went today as he also teaches Sunday School.
Funny things...
I have a few more you would not say to "non-CF" child....
Keep running it will make you cough and feel better.
Finish up your ice cream shake so you can have some strawberries.
That was a good cough.
Eat two more bites of your cookies and you can get down.
More cheese dip then you can have some tomatoes (or "mamatoes" as she calls them)
Eleanor sayings...
Ready to do the "abby"...
Time for the TOBI...
Want to spray the nose (then she goes and sits in her pink chair and waits for her saline rinse)
Daddy I teted...to which Robert responds Thanks for sharing eleanor.
She is as resilient as ever and I am glad as there are days when I am certainly ready to throw in the towel.
We have a doctor's appt on Monday just a normal well check with her ped doctor. So I will let you know how that goes.
Pray for her cough, our food battles and she has a smooth appointment tomorrow...
His Grace is Sufficient at all times for me,
Thank you Lord,
Coleen
Well the Guilford family has been a busy one. I told you we are up to nine treatments a day. This is how our day goes. Up between 8-830am then vest and albuterol (or "abby") as Eleanor likes to call it. Then we eat breakfast. This has been a struggle. She used to drink a cup of whole milk with Carnation Instant Breakfast and Heavy Cream but now she is completely refusing it. I can get her to drink maybe a 1/4 cup of chocolate milk but that is it. This is very stressful for me as I do not like her not having what she needs and the battles have caused much stress. :( After breakfast I let her run around then we do the TOBI it last about 20 minutes. Next is our first saline nose rinse.
Then we have a break for a while. She gets to play and then we eat lunch and nap time. After nap time she gets to do her vest and "abby" again. Then a snack if she gets up in time. Now she gets to play while I figure out what is for supper. I have not done well cooking of late. There seems to be no time between her treatments and my work for the church next thing I know it is 445 and I have nothing ready to fix.
Robert has been great helping with supper...he calls and says he is bringing something home. This past week the grandparents were all down so it helped me have a break. Anyway, I was rambling, after supper we do her "abby" around 730 then bath and pulmozyme, vest, and TOBI. Final treatment of the day is the saline nose rinse. At this point it is usually 9 and we have a sleepy girl. Funny thing is we put her in bed and she will sometimes talk until 10-1030.
I guess that is why I have not found time to update you. But I wanted to get on this morning to let you know I have not forgotten about the blog. Robert and I are tag teaming church...I went last week and he went today as he also teaches Sunday School.
Funny things...
I have a few more you would not say to "non-CF" child....
Keep running it will make you cough and feel better.
Finish up your ice cream shake so you can have some strawberries.
That was a good cough.
Eat two more bites of your cookies and you can get down.
More cheese dip then you can have some tomatoes (or "mamatoes" as she calls them)
Eleanor sayings...
Ready to do the "abby"...
Time for the TOBI...
Want to spray the nose (then she goes and sits in her pink chair and waits for her saline rinse)
Daddy I teted...to which Robert responds Thanks for sharing eleanor.
She is as resilient as ever and I am glad as there are days when I am certainly ready to throw in the towel.
We have a doctor's appt on Monday just a normal well check with her ped doctor. So I will let you know how that goes.
Pray for her cough, our food battles and she has a smooth appointment tomorrow...
His Grace is Sufficient at all times for me,
Thank you Lord,
Coleen
Monday, February 15, 2010
Here's the update on our life...
I know it has been a few days...here's the scoop. Eleanor is coughing more and more each day. She coughed a lot this morning with Robert. I called Pensacola and we are to up her Albuterol treatments to three times a day with her vest up to three times as well. I do not know if something is going on or not but her BM's are throwing her nap schedule off. Robert put her down at 1:45 today and she fell asleep at 400pm. This is the same thing she did yesterday. We are both concerned that her coughing may have something to do with it. She doesn't cough when she sleep so I don't know.
Yesterday...she threw up in the nursery...not really sure why but Mrs. Polly had to clean her up and bless her she didn't even call us to come get her. We really LOVE Mrs. Polly and the love she shows Eleanor. The unsettling part is that the throw up was mostly mucus. She has not done this ever. The good thing is she needs to get the mucus out but this just all seems to be happening so sudden. Since we just got out of the hospital with the IV treatment we are both concerned that something else is going on.
On the lighter side...
Things you never thought you would say to your kid....No, you can't just eat the icing you have to eat the cookie too. And: No, you have to take a bigger bite of your cookie. Never dreamt that I would encourage her to eat her junk food. Also, we got her RSV shot today and she weighed 27 pounds. Yeah!! This is more that is about two more pounds than we weighed a month ago.
Pray that her cough is just the antiboitics loosening up the junk that is in there and nothing else is happening with her. Pray that we can get her BM's back on schedule so she can take a nap at a decent nap hour.
Coleen
Yesterday...she threw up in the nursery...not really sure why but Mrs. Polly had to clean her up and bless her she didn't even call us to come get her. We really LOVE Mrs. Polly and the love she shows Eleanor. The unsettling part is that the throw up was mostly mucus. She has not done this ever. The good thing is she needs to get the mucus out but this just all seems to be happening so sudden. Since we just got out of the hospital with the IV treatment we are both concerned that something else is going on.
On the lighter side...
Things you never thought you would say to your kid....No, you can't just eat the icing you have to eat the cookie too. And: No, you have to take a bigger bite of your cookie. Never dreamt that I would encourage her to eat her junk food. Also, we got her RSV shot today and she weighed 27 pounds. Yeah!! This is more that is about two more pounds than we weighed a month ago.
Pray that her cough is just the antiboitics loosening up the junk that is in there and nothing else is happening with her. Pray that we can get her BM's back on schedule so she can take a nap at a decent nap hour.
Coleen
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