Yeah!! So excited that the Cipro is done!! She is coughing only a little and her chest sounds better. Pray that the Cipro did get rid of her Staph in her lungs. I think it did but we will not know until we get back from the doctor on April the 19th.
Eleanor has been pretty good about taking the Cipro even though I know it must taste horrible. I have been so proud of her! So as a surprise she received a full size Aladdin and Jasmine doll in the mail. She is sooo excited!!
She continues to be a good big sister to Thomas! Thomas always has a smile for his big sister and really seems to adore her! What a blessing they are together!
We are now in the fundraising season of CF....
We are selling Belk Charity Sale tickets for $5.00, BBQ plate tickets for May 4th, and I have set up my page for donations at http://www.cff.org/Great_Strides/ColeenGuilford8098.
Thank you so much for your support and prayers more update and pictures to come!
Happy Easter!! Christ is Risen!! HE is RISEN INDEED!!
Coleen, Robert, Eleanor and Thomas
Showing posts with label cf. Show all posts
Showing posts with label cf. Show all posts
Tuesday, April 3, 2012
Thursday, March 15, 2012
Eleanor update
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
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
Tuesday, March 13, 2012
Culture update...
I called this morning and Eleanor cultured Staph. Ugh! This is the first time she has cultured it. The nurse knowing my tendancy to freak out told me to not worry! :) I know, right! She is right thought it does me no good to worry. The cipro the doctor prescribed for Eleanor will take care of the Staph in her lungs so we are good! I pray this helps her lungs to feel better. Keep praying for her...she had a really good day as far as attitude and eating today. I could feel the prayers! I cannot tell you how much it means to me to know we are constantly wrapped in prayer. It makes me smile!
Eleanor ate such a good lunch today at Simple Simon's Pizza in Dothan. I was ready to go and she said, "Wait mommy! I want another piece of pizza!" Boy was that music to my ears!
We should start the Cipro tomorrow. Please pray it kills all the bad stuff and doesn't cause any tummy troubles.
Coleen
Eleanor ate such a good lunch today at Simple Simon's Pizza in Dothan. I was ready to go and she said, "Wait mommy! I want another piece of pizza!" Boy was that music to my ears!
We should start the Cipro tomorrow. Please pray it kills all the bad stuff and doesn't cause any tummy troubles.
Coleen
Thursday, March 8, 2012
Eleanor's latest CF Visit
We just got back from our day long journey to Pensacola to see the CF doctor. It is always an adventure when we go to Pensacola. Especially now that we have Thomas, who is now five months, to go along for a whole day confined to either a car seat or a stroller. Today Grami and Pawpaw went with us and helped make the trip so much better!
Some background: Eleanor has had a on and off stuffy nose and just in the last week a crappy sounding cough. She also has started having a hard time dealing with certain things...mostly because lack of sleep and today we found out another reason.
So the great news is that we gained 1.3 pounds since December. I think that I can speak for Robert and I both when I say, "YEAH!!!!" We have worked extra hard to get some weight on her. She knows the routine when we check in and she gets her vitals done. The Respiratory tech tried to get her to blow in the macine that will measure her PFTs but she said she was scared. I knew something was off when she said that. So one of my prayer request is to pray that at our next visit she steps up and blows in the machine. I know she can do it! Last time she did very good with getting her culture and this time she freaked out a little bit but we did get it done.
She then saw the doctor and we talked about several things. One thing being that the flu is going around Hartford so I asked about going to church. You see we do not live in a bubble with Eleanor but we also try to make sure to keep her out of "for sure" bad situations. I hope that makes sense. She has her flu shot but since the flu is prevelant the doctor said we might take a break for a week or two from church to let it run its course. I hate this because she loves going, but I know it is best for her right now.
Another thing we talked about was Eleanor's cough. It is a yucky cough and after listening to her the doctor said she heard the dreaded crackling in the lungs. So we are on an extra one or two vest treatments with her xopenex. Doc went ahead and prescribed Cipro for 21 days. We hope this clears the crud out!! So pray she can maintain a good attitude with all of the extra stuff. She has done good since her other new treatments we added last time, but lately she has been a bit off in her attitude. Pray that this medicine helps clear her lungs and helps get her back to the peppy Eleanor we know.
We go back April 19th as a follow up appointment to see how she is doing. We appreciate all of our prayer warriors.
We get our culture back on Monday...will try to update that next week.
Coleen
Some background: Eleanor has had a on and off stuffy nose and just in the last week a crappy sounding cough. She also has started having a hard time dealing with certain things...mostly because lack of sleep and today we found out another reason.
So the great news is that we gained 1.3 pounds since December. I think that I can speak for Robert and I both when I say, "YEAH!!!!" We have worked extra hard to get some weight on her. She knows the routine when we check in and she gets her vitals done. The Respiratory tech tried to get her to blow in the macine that will measure her PFTs but she said she was scared. I knew something was off when she said that. So one of my prayer request is to pray that at our next visit she steps up and blows in the machine. I know she can do it! Last time she did very good with getting her culture and this time she freaked out a little bit but we did get it done.
She then saw the doctor and we talked about several things. One thing being that the flu is going around Hartford so I asked about going to church. You see we do not live in a bubble with Eleanor but we also try to make sure to keep her out of "for sure" bad situations. I hope that makes sense. She has her flu shot but since the flu is prevelant the doctor said we might take a break for a week or two from church to let it run its course. I hate this because she loves going, but I know it is best for her right now.
Another thing we talked about was Eleanor's cough. It is a yucky cough and after listening to her the doctor said she heard the dreaded crackling in the lungs. So we are on an extra one or two vest treatments with her xopenex. Doc went ahead and prescribed Cipro for 21 days. We hope this clears the crud out!! So pray she can maintain a good attitude with all of the extra stuff. She has done good since her other new treatments we added last time, but lately she has been a bit off in her attitude. Pray that this medicine helps clear her lungs and helps get her back to the peppy Eleanor we know.
We go back April 19th as a follow up appointment to see how she is doing. We appreciate all of our prayer warriors.
We get our culture back on Monday...will try to update that next week.
Coleen
Friday, January 20, 2012
Birth Announcement...to 3.5 months old~~
Hey,
I know I am behind...most of you know by now that Thomas Harold Guilford arrived on October 7, 2011! He is precious and looks like he is going to have red hair like his Eleanor! He arrived via C-section, after a day of being induced, at 11:00 pm. It was a special day as it was my grandmother's birthday and his middle name was her husbands first name. :)
Thomas is growing like a weed and he has a VERY PROUD Big Sis! Eleanor loves him so much! She wanted to wear her big sis shirt everyday after he was born! I am also happy to announce that Thomas is only a carrier of CF!! Praise the Lord he was born CF free!
Eleanor has enjoyed her baby brother very much. She is learning the ropes of having a baby brother in the house and for the most part has done very well with the transition.
As for her CF, we have a new CF doctor and Eleanor loves her! The doc is very attentive to Eleanor and very thorough. I cannot complain. We did leave with some new treatments. We are now on Xopenex, Saltwater 7%, and the quick start vest treatment. The vest treatment is definately helping the "little green men" that were in her chest the doctor heard at our appointment. It is also very vigorous. She cannot talk very well while it is going but as always she is taking it like a champ. She takes her "salt" very well. I have heard it is like breathing sandpaper when you are not used to it but she only mentioned that it tastes really bad. She takes it twice a day now along with the Xopenex. She also was on two antibiotics for strep that showed up on her last culture. She took them like a big girl even though one smelled horrible!
The other challenge we faced was that she only gained .5lbs in six months. This was not great news but kind of expected by Robert and I since she is not wanting to eat. We have amped up her diet so we can put on the pounds without other measures right now. She now drinks supermilk...whole milk with 1/4 cup heavy cream and chocolate syrup. Bacon, two pieces every morning, lots of homemade ranch dip, and smoothie (more like high calorie milkshakes!)
She is doing good with all the new changes in her life. Pray for her to have a attitude of wanting to eat and continue to take her treatments.
She will turn 4 on the 28th of this month! We are having a gymnastics party and she is super excited! Hope to do better with the blog and will link some pix of thomas!
Her culture came back normal from her visit and that is a definate praise!!
Coleen
I know I am behind...most of you know by now that Thomas Harold Guilford arrived on October 7, 2011! He is precious and looks like he is going to have red hair like his Eleanor! He arrived via C-section, after a day of being induced, at 11:00 pm. It was a special day as it was my grandmother's birthday and his middle name was her husbands first name. :)
Thomas is growing like a weed and he has a VERY PROUD Big Sis! Eleanor loves him so much! She wanted to wear her big sis shirt everyday after he was born! I am also happy to announce that Thomas is only a carrier of CF!! Praise the Lord he was born CF free!
Eleanor has enjoyed her baby brother very much. She is learning the ropes of having a baby brother in the house and for the most part has done very well with the transition.
As for her CF, we have a new CF doctor and Eleanor loves her! The doc is very attentive to Eleanor and very thorough. I cannot complain. We did leave with some new treatments. We are now on Xopenex, Saltwater 7%, and the quick start vest treatment. The vest treatment is definately helping the "little green men" that were in her chest the doctor heard at our appointment. It is also very vigorous. She cannot talk very well while it is going but as always she is taking it like a champ. She takes her "salt" very well. I have heard it is like breathing sandpaper when you are not used to it but she only mentioned that it tastes really bad. She takes it twice a day now along with the Xopenex. She also was on two antibiotics for strep that showed up on her last culture. She took them like a big girl even though one smelled horrible!
The other challenge we faced was that she only gained .5lbs in six months. This was not great news but kind of expected by Robert and I since she is not wanting to eat. We have amped up her diet so we can put on the pounds without other measures right now. She now drinks supermilk...whole milk with 1/4 cup heavy cream and chocolate syrup. Bacon, two pieces every morning, lots of homemade ranch dip, and smoothie (more like high calorie milkshakes!)
She is doing good with all the new changes in her life. Pray for her to have a attitude of wanting to eat and continue to take her treatments.
She will turn 4 on the 28th of this month! We are having a gymnastics party and she is super excited! Hope to do better with the blog and will link some pix of thomas!
Her culture came back normal from her visit and that is a definate praise!!
Coleen
Tuesday, August 23, 2011
Moved but not quite moved in...
Well, we have moved and are now in Hartford, AL. This moved happened so fast that it is still hard to believe that we are in Hartford. Two months ago if you have told me that I would be in Hartford in August, I honestly would have thought it was crazyiness. Robert was offered a job opportunity in the town he grew up in and after much prayer and wrestling with what we were to do we felt it was the Lord's will that we move back to Hartford.
It was a VERY hard decision to make since it meant uprooting our lives with me being 7 months pregnant. Leaving our church family and friends behinds was very difficult for all three of us, but everything has worked itself out according to His plan. Eleanor misses her friends but is having a ball up here in church. There are several girls her age she loves to play with at church. You didn't think she was going to have a hard time finding friends, did you? :)
Another benefit is that Robert's work is only three minutes down the road. He was driving 45 minutes one way when we were in Florida. We get to enjoy much more family time as he comes home for lunch and get home a little after four in the afternoon. I have to say it is wonderful to spend more time together as a family. Speaking of family we are now much closer to both set of grandparents and I believe that it makes both sets very happy. Eleanor is getting used to seeing her grandparents on a weekly basis rather than a monthly basis. This truly makes my heart happy.
We are settling in up here and trying to get everything in order for baby boy's arrival. He is doing well. My last appointment was on August 9 and he weighed 3.5 lbs and changed from head down to transverse (parallel to the ground). He seems to change back and forth between the two positions making me rather uncomfortable sometimes but what a wonderful feeling it is to feel him move inside of my belly!! Prayers that he will turn head down and stay that way. My next appointment with my new OB is next week. I will let you know how the appointment goes.
Eleanor is super excited about having a baby brother come. She keeps talking about how she is going to change his diaper and teach him his letter, numbers, and on and on... It is quite funny to listen to.
Last but not least, Eleanor had a CF appointment at the end of July and she had gained three pounds and grown a few inches. Her culture came back normal so we are praising the Lord for such a good report. Keep her in your prayers as she continues to adjust to her new home and surroundings.
Thank you for your prayers,
Coleen
It was a VERY hard decision to make since it meant uprooting our lives with me being 7 months pregnant. Leaving our church family and friends behinds was very difficult for all three of us, but everything has worked itself out according to His plan. Eleanor misses her friends but is having a ball up here in church. There are several girls her age she loves to play with at church. You didn't think she was going to have a hard time finding friends, did you? :)
Another benefit is that Robert's work is only three minutes down the road. He was driving 45 minutes one way when we were in Florida. We get to enjoy much more family time as he comes home for lunch and get home a little after four in the afternoon. I have to say it is wonderful to spend more time together as a family. Speaking of family we are now much closer to both set of grandparents and I believe that it makes both sets very happy. Eleanor is getting used to seeing her grandparents on a weekly basis rather than a monthly basis. This truly makes my heart happy.
We are settling in up here and trying to get everything in order for baby boy's arrival. He is doing well. My last appointment was on August 9 and he weighed 3.5 lbs and changed from head down to transverse (parallel to the ground). He seems to change back and forth between the two positions making me rather uncomfortable sometimes but what a wonderful feeling it is to feel him move inside of my belly!! Prayers that he will turn head down and stay that way. My next appointment with my new OB is next week. I will let you know how the appointment goes.
Eleanor is super excited about having a baby brother come. She keeps talking about how she is going to change his diaper and teach him his letter, numbers, and on and on... It is quite funny to listen to.
Last but not least, Eleanor had a CF appointment at the end of July and she had gained three pounds and grown a few inches. Her culture came back normal so we are praising the Lord for such a good report. Keep her in your prayers as she continues to adjust to her new home and surroundings.
Thank you for your prayers,
Coleen
Tuesday, July 5, 2011
It's been three months!
So after three months of no blogging I thought I would let you know we are still here! I have not had an abundance of time lately to blog but wanted to update you on several things.
Eleanor is doing good. She has had a busy summer. We have gone to birthday parties, the pool, Gulf World, the beach, and spend the night parties. I think the last is her favorite one! She starts her round of TOBI tomorrow. Everyday she talkes about her little baby brother and what she is going to teach him! What she is going to teach him varies on what mood she is in but all of it is very funny!!
Speaking of her little brother he is due on October 14 and right now I am currently 25 weeks. His ultrasound for his growth back at 16 weeks showed everything was on track and looking good. We do have one glitch. For some reason I only have one artery and one vein in the umbilical cord. You are supposed to have two arteries. They say it can cause slow growth but he has always measured above average at every ultrasound. Please help us pray that this will continue to not be a problem and this little boy in my belly will be big and strong. We know the Lord has good things for him just like he has for Eleanor. My next appointment is July 19 and will have another ultrasound. I will update everyone then.
One more piece of exciting news! We raised over 51,000.00 at the Destin CF walk this year! Thank you for all of your support of not only Eleanor but of all of the kids and adults who suffer with this disease.
Coleen
Eleanor is doing good. She has had a busy summer. We have gone to birthday parties, the pool, Gulf World, the beach, and spend the night parties. I think the last is her favorite one! She starts her round of TOBI tomorrow. Everyday she talkes about her little baby brother and what she is going to teach him! What she is going to teach him varies on what mood she is in but all of it is very funny!!
Speaking of her little brother he is due on October 14 and right now I am currently 25 weeks. His ultrasound for his growth back at 16 weeks showed everything was on track and looking good. We do have one glitch. For some reason I only have one artery and one vein in the umbilical cord. You are supposed to have two arteries. They say it can cause slow growth but he has always measured above average at every ultrasound. Please help us pray that this will continue to not be a problem and this little boy in my belly will be big and strong. We know the Lord has good things for him just like he has for Eleanor. My next appointment is July 19 and will have another ultrasound. I will update everyone then.
One more piece of exciting news! We raised over 51,000.00 at the Destin CF walk this year! Thank you for all of your support of not only Eleanor but of all of the kids and adults who suffer with this disease.
Coleen
Thursday, April 7, 2011
Easter crafting with Eleanor
Easter crafts!
Today we went to our favorite craft store, Hobby Lobby, and hit the sales on Easter eggs. Tonight after supper Eleanor and I did some crafting. Eleanor told me what she wanted and mommy cut and hot glued! We have an Easter Cow, Bunny, Moose and Chick. I know that cows and moose do not really fit the theme but she was sure that was what she wanted to make! This is such a fun age. I love being able to craft with her like this. It adds another thing for us to look forward to! We even manage to get this in on TOBI nights like tonight. Like I have said before Eleanor has CF but it doesn't have her. We will never let CF define who she is or control what we do. I love that she received some of her mommy's genes and likes to make things. This is going to be fun!
Other news
Tomorrow (april 8) we will be thirteen weeks! So excited everything has been going well. I just seem to have to pace myself because I tire out much faster than normal. Eleanor is cute and continues to talk about what she is going to "teach" the baby when it gets here! LOL! It will be a sight to behold.
Thank you for the prayers and continue praying for us it is felt daily!
Coleen, Robert, and Eleanor
Thursday, March 31, 2011
Updates, News and stuff!
Updates:
We are still in the midst of doing our TOBI treatments. She is doing well most of the time. We are starting to encounter the I don't want to's. Right now we just change up her routine and let her paint or play with playdough while she is doing the TOBI. It seems to have worked as today she didn't want me to take the TOBI off because she wanted to continue to paint!
She is now on Prevacid once a day for her reflux. This is a result of her bronch. Found out that she has very bad reflux. Interesting as she never seems to complain about it but who know that she is dealing with that she doesn't tell us. :) She is a strong little warrior.
News:
Robert and I went to the doctor yesterday and confirmed that we are pregnant!!
Eleanor doesn't quite understand. When we told her she was going to be a big sister she did a little dance and screamed, "Yeah!!" She told us that she can teach it numbers, letters, and to help it drink. I will update you with her other interesting insights as we get them.
CF Fundraising
We are in the middle of our fundraising. I have tshirts for 15.00 and we have raffle tickets. If you would like to just make a donation please click on this link:
http://www.cff.org/Great_Strides/ColeenGuilford7495
Thanks!
Coleen, Robert, and Eleanor
We are still in the midst of doing our TOBI treatments. She is doing well most of the time. We are starting to encounter the I don't want to's. Right now we just change up her routine and let her paint or play with playdough while she is doing the TOBI. It seems to have worked as today she didn't want me to take the TOBI off because she wanted to continue to paint!
She is now on Prevacid once a day for her reflux. This is a result of her bronch. Found out that she has very bad reflux. Interesting as she never seems to complain about it but who know that she is dealing with that she doesn't tell us. :) She is a strong little warrior.
News:
Robert and I went to the doctor yesterday and confirmed that we are pregnant!!
This is our baby #2. She/he measures at 3 inches and will be twelve weeks tomorrow (4/1)! We are due on 10/14/11. Isn't it amazing how meticulous God is?? What a precious sight it was seeing this little one kicking, stretching, and dancing around. The doctor says everything looks normal and healthy. "For you created my inmost being; you knit me together in my mother’s womb. ~Ps. 139:13
It is not wonderful that you can see the profile of the little face the nose, lips, chin, forehead. The little legs. You cannot see the arms because the baby was moving so fast. We are very excited and would ask all of you to pray for a healthy baby and a smooth pregnancy.
Eleanor doesn't quite understand. When we told her she was going to be a big sister she did a little dance and screamed, "Yeah!!" She told us that she can teach it numbers, letters, and to help it drink. I will update you with her other interesting insights as we get them.
CF Fundraising
We are in the middle of our fundraising. I have tshirts for 15.00 and we have raffle tickets. If you would like to just make a donation please click on this link:
http://www.cff.org/Great_Strides/ColeenGuilford7495
Thanks!
Coleen, Robert, and Eleanor
Monday, March 14, 2011
Bronch Results
We received the Bronch results in several different batches so I have waited to post until we know all of them. The day of the bronch went well. Eleanor only had a little anxiety...mostly about seeing the guy who does her throat culture. She was very happy when we said that she would not be seeing him today. We saw our doctor and all the pre-op nurses. Eleanor even walked off with the anesthesiologist without even looking back. So before the procedure Eleanor did wonderfully. A wonderfully comforting thing happened right before she was taken down. The doctor came in and talked with us and said, "Do you mind if I pray?" "We would love that!", was our reply! How awesome...to know that the person whose hands she will be in wants to pray before the procedure...calm and peace were given to us from the Lord.
We waited about 30 minutes and the doctor came back up and said that she looked better than he expected. (Yeah!) He saw no signs of any problems and what secretions she did have; he sucked out.
Now we were led back to her room where she was waking up. This part did not go as well...the meds made her a little angry. She was not happy to have an IV in her foot. She tried to pull it out several times. Let's just say that when we left the hospital and finally got in the car we were wondering what child that was that woke up from the procedure. She did start acting normal when we got to the car and proceeded to talk and tell us she was hungry.
That afternoon she was on the couch playing with Bubs Ipad when she just up and fell asleep on me. THIS NEVER HAPPENS. We figured it was just the after effects from the procedure. Well, she got goosebumps all over her then proceeded to get hot...like on fire hot. We took her temp and it was over 102. So we called the doctor and were instructed to give her some tylenol to help. We could definitely tell when it kicked in. She was up and talking again like her normal self. The fever went away with the medicine and when she woke up the following morning she pronounced herself well!
RESULTS
The results of the test were really good. Her first culture came back normal...this would have been the one to show if she had any pseudomonas. The second culture which would have told us if she was growing any fungus or mold came back normal! The third one which tells us if she had acid reflux came back positive. It measure 4+ which is on the high end. It is weird because we have never noticed it but then it was mentioned that it can cause a cough. Hmmm...wonder if that is what causes the unexplained cough sometimes.
Her labs came back good except her Vitamin A level was low again. We will be taking an extra dose of the vitamin to help bump it up.
Those are our results! Praise the Lord we received a good report. It could have been must worse. We are very thankful.
Thank you for your prayers and support. We are already back on our 28 days of TOBI. She is handling it really well. She is such a trooper!
Coleen
We waited about 30 minutes and the doctor came back up and said that she looked better than he expected. (Yeah!) He saw no signs of any problems and what secretions she did have; he sucked out.
Now we were led back to her room where she was waking up. This part did not go as well...the meds made her a little angry. She was not happy to have an IV in her foot. She tried to pull it out several times. Let's just say that when we left the hospital and finally got in the car we were wondering what child that was that woke up from the procedure. She did start acting normal when we got to the car and proceeded to talk and tell us she was hungry.
That afternoon she was on the couch playing with Bubs Ipad when she just up and fell asleep on me. THIS NEVER HAPPENS. We figured it was just the after effects from the procedure. Well, she got goosebumps all over her then proceeded to get hot...like on fire hot. We took her temp and it was over 102. So we called the doctor and were instructed to give her some tylenol to help. We could definitely tell when it kicked in. She was up and talking again like her normal self. The fever went away with the medicine and when she woke up the following morning she pronounced herself well!
RESULTS
The results of the test were really good. Her first culture came back normal...this would have been the one to show if she had any pseudomonas. The second culture which would have told us if she was growing any fungus or mold came back normal! The third one which tells us if she had acid reflux came back positive. It measure 4+ which is on the high end. It is weird because we have never noticed it but then it was mentioned that it can cause a cough. Hmmm...wonder if that is what causes the unexplained cough sometimes.
Her labs came back good except her Vitamin A level was low again. We will be taking an extra dose of the vitamin to help bump it up.
Those are our results! Praise the Lord we received a good report. It could have been must worse. We are very thankful.
Thank you for your prayers and support. We are already back on our 28 days of TOBI. She is handling it really well. She is such a trooper!
Coleen
Tuesday, February 15, 2011
Pre-admin done!
I have gone thru the pre-administration for Eleanor over the phone. It was funny talking with the lady and having to tell her about Eleanor's different meds and about her enzymes. It was a interesting conversation...I always forget when we go a while without having to have one of "those" conversations. I forget that not everyone knows what CF entails on a daily basis. Since it is just second nature to me as it is our life.
We have to be at the hospital at 6 am on Monday. Bright and early...this should be interesting! Eleanor will be fine until we see the hospital then she will probably start crying. I already warned the lady that she would not be happy to see them after her last experience getting an IV. She told me Eleanor would get some happy juice and should be fine. All I have to say is that I warned her! ;)
We are done with TOBI!! Finished up yesterday morning, so this morning we got to go for a stroll along 30A and see the water. I could smell the salt in the air which is a good benefit to her. She wanted to go play in the waves and sand. She was told to wait until it warms up. Although we might try to go on Thursday if it warms up to almost 70!
Keep her and us in your prayers. I will try to update the blog on Monday afternoon to tell you how it all went.
Coleen
We have to be at the hospital at 6 am on Monday. Bright and early...this should be interesting! Eleanor will be fine until we see the hospital then she will probably start crying. I already warned the lady that she would not be happy to see them after her last experience getting an IV. She told me Eleanor would get some happy juice and should be fine. All I have to say is that I warned her! ;)
We are done with TOBI!! Finished up yesterday morning, so this morning we got to go for a stroll along 30A and see the water. I could smell the salt in the air which is a good benefit to her. She wanted to go play in the waves and sand. She was told to wait until it warms up. Although we might try to go on Thursday if it warms up to almost 70!
Keep her and us in your prayers. I will try to update the blog on Monday afternoon to tell you how it all went.
Coleen
Wednesday, February 9, 2011
T-shirts!!
Here is our T-shirt design for 2011!! We FELL IN LOVE with this design because it just embodies many things for us. Can't you just see Eleanor floating away with a big smile on her face?!?
Please let me know if you want a shirt. They are $15.00 each. They will be printed on white t-shirts. You can email me at r-cguilford@mchsi.com let me know how many and what size you would like.
A big shout out to Andy Stein at who is printing the shirts for us. He has a little girl who has CF as well. Thank you!!
WE are doing well right now...still on TOBI but going to be off soon. Received a call today and Eleanor has been pre-registered for her "procedure" on the 21st. All is going well.
I will soon have a link to my CF page for those of you who would like to make a donation on behalf of Eleanor this year.
Thank you for all of your support!!
Coleen, Robert, and Eleanor
Coleen, Robert, and Eleanor
Monday, February 7, 2011
Date has been set...
We have set a date for Eleanor's bronch. It will be President's day. She will not be told about it until right before. I know this seems bad to some of you but she still cries at the thought of visiting the doctor's office. Now, mind you, she is a big girl and the tears stop after we tell her what they are going to do. She recites listen to my chest, to my ears, show them my teeth, and then we will be all done!! Most of the time this is what happens and thankfully we have not had any shots during our last few doctor's visits.
However, this time I cannot tell her that. She will have to get another IV (if you recall last time they did this she "spilled" all over the nurse). I have trust and FAITH in God that all will go well, but I simply cannot tell her about it now and have her tear up everytime we talk about it. She is just so smart and has such a great memory.
We have to check in at 6:30 am and the outpatient procedure will begin at around 8:00 am. She will be asleep for this procedure. Most people with CF call it a "bronch" but medically it is called a bronchoscopy. Now some of you are going to be tempted to google it to see what it is, that is fine. Do know that there are all different types of opinions and articles that can be misleading on the internet.
Basically, they are going to thread a scope either thru her mouth or nose into her lungs to look at them. They will be able to see how much mucous she has in there, how her actual lungs look and to take a sample of her mucous from her lungs that will be more accurate than the throat cultures she gets every quarter. ( those are about 70% accurate) It will give us a good reading about how we stand.
Please pray for Eleanor and for her wonderful CF doctor that will be performing the procedure. It is an outpatient procedure so she will not be staying the night. We will get to come home afterwards.
We are still on her TOBI and will end right around Valentine's day. Bless her, she has been a little trooper. She got to play with some friends last night and she is worn out today! At least it is in a good way.
More later,
Coleen
Friday, February 4, 2011
Birthday!!!!
Happy Birthday to Eleanor!!
Wow my baby turned three! It is really hard to believe that she is three...really hard. Last year at this time we were in the hospital for Eleanor's first PICC line and IV meds. So, um, we were just a LITTLE happy to be planning a party and not be in the hospital. We did come close to going in this year but thankfully for now we are just on TOBI.
Eleanor's birthday ended up being more of a weekend then a day...we celebrated Friday, Saturday and Sunday. It was lind of like two birthday's in one for her. To say she had a blast would be an understatement. Friday we celebrated with family. Aunt Becky and Joshua and Camille, cousins, from Auburn came down to celebrate with her. Nanny and Bubs helped celebrate as well. We opened family presents (Robert and I decided we probably got too many presents. Then we decided it didn't matter because last year she was in the hospital)
Saturday Aunt Ashley and Uncle Stuart came down from Troy with her cousins, Brody and Lauren. Unfortunately, Grami and Pawpaw did not get to come because he was in the hospital having tests done. :( They were missed...please keep them in your prayers.
Her friends came over and we had pizza (requested by the birthday girl) and cake (picked out by the birthday girl). Then we opened presents.
Now it was off to Build-a-bear to have a party their. They all had a blast!! I think everyone was excited about it and left with a new friend!!
I am in the process of uploading pictures right now. When I get them up I will post the link.
We are extremely thankful to all of the people out keep us in their prayers even when we are "well." We learned that things can and usually do happen quickly with CF. Keep her in your prayers as we will have a procedure called bronch soon.
Other things...
She is learning bible verses and has been quite cute with them. We are on our third verse and she is reciting them very well. So proud...we want her to have these written upon her heart at an early age so she can recall them when she gets older with no problem.
Sorry for the long blog...but thanks for reading!
Coleen
Wow my baby turned three! It is really hard to believe that she is three...really hard. Last year at this time we were in the hospital for Eleanor's first PICC line and IV meds. So, um, we were just a LITTLE happy to be planning a party and not be in the hospital. We did come close to going in this year but thankfully for now we are just on TOBI.
Eleanor's birthday ended up being more of a weekend then a day...we celebrated Friday, Saturday and Sunday. It was lind of like two birthday's in one for her. To say she had a blast would be an understatement. Friday we celebrated with family. Aunt Becky and Joshua and Camille, cousins, from Auburn came down to celebrate with her. Nanny and Bubs helped celebrate as well. We opened family presents (Robert and I decided we probably got too many presents. Then we decided it didn't matter because last year she was in the hospital)
Saturday Aunt Ashley and Uncle Stuart came down from Troy with her cousins, Brody and Lauren. Unfortunately, Grami and Pawpaw did not get to come because he was in the hospital having tests done. :( They were missed...please keep them in your prayers.
Her friends came over and we had pizza (requested by the birthday girl) and cake (picked out by the birthday girl). Then we opened presents.
Now it was off to Build-a-bear to have a party their. They all had a blast!! I think everyone was excited about it and left with a new friend!!
I am in the process of uploading pictures right now. When I get them up I will post the link.
We are extremely thankful to all of the people out keep us in their prayers even when we are "well." We learned that things can and usually do happen quickly with CF. Keep her in your prayers as we will have a procedure called bronch soon.
Other things...
She is learning bible verses and has been quite cute with them. We are on our third verse and she is reciting them very well. So proud...we want her to have these written upon her heart at an early age so she can recall them when she gets older with no problem.
Sorry for the long blog...but thanks for reading!
Coleen
Wednesday, December 8, 2010
'Tis the Season of CHRISTmas...
I have so many things to update you on... WARNING IT IS GOING TO BE LONG!
First...we lost another member of my family the day after Thanksgiving. My dad's mother passed away literally almost a month to the day of my mom's mother. What a tremedous season of loss this has been in our family. The encouraging news this that one day we will get to see them again one day in Heaven and I look forward to that day. This comforts me more than any of you could know.
Eleanor went to the Georgia vs Auburn game and had a blast. This would be the first time in her 2.75 years that I skipped her nap ( I am a schedule person!!). The game started at 2:30 as most of you know... we were not sure how this would go...
She could not have done better she was a doll during the ENTIRE game. She colored and read books with all of our help. (Nanny, Aunt Debbie, Jacob, Jessica and Uncle Scott) We thought we might have to take her to see Bubs and the Ipad at half but she did just great. She was good on the way home as well. Didn't get to bed until 9:45 and had been awake for well over twelve hours. It was a blessing!!
Thanksgiving has come and gone...I want to tell you that I am thankful for my entire family and for my support group that I have. The year would have been really bad without them. Thank you all who pray for Eleanor on a daily basis. Please keep those prayers coming we feel them.
Since it is the Christmas season Robert and I have read the story of Jesus' birth to Eleanor so we can start from the beginining of her life to know that Christmas is about Jesus. She has been quite cute. She is constantly wanting to know when she gets to see him? Can I go to the birthday party for Jesus? (Yes we will be having a birthday cake for Jesus on Christmas.) The greatest one is: Are we following God? She is truly remarkable and reminds me daily of our walk with Him.
She is, however, very excited about her visit from Santa. At Thanksgiving she was thankful for Santa, Jesus and her family.
Last night we make cookies. She decorated them and also helped me cut them out with the cookies cutters. I will upload those pictures and link them so you can see her at work.
Finally, we went to the doctor mid-November and she weighed 29 lbs. and was a little over 35 inches tall. She gained a pound but grew so the doctor was pleased. The greatest news of all was that she doesn't have Psuedomonas any more!! No more TOBI for now... we are so very thankful to get a break. Hopefully it will stay away for a while until then we are going to enjoy our break.
Remember why we celebrate CHRISTmas... it is called CHRISTmas for a reason.
Coleen OH and by the way WAR EAGLE!!!
Friday, November 5, 2010
Updates...
October Updates
Where to start...it has been a hard month. We lost two more family members in October. Robert's Aunt and my grandmother passed this month. This world lost two good Christian ladies. However, they are no longer suffering and are with Jesus. We rejoice for them!
Eleanor was on TOBI this month and it was a hard TOBI cycle this time. It started off rough with a cough after only a day and a half and the cough is still with us. It also seems to have sapped some of her energy. If you didn't know her you would probably think I was crazy but she is more run down after this cycle. I am happy that it is doing its job but am ready for a cure so we do not have to do this....
We went to the pumpkin patch in Niceville at the UMC. Eleanor had a blast!
She was smiling really good in this picture. She also went to the Peanut Festival with her Daddy, Nanny, Bubs, and cousins. I have uploaded these pictures on my share site. http://guilfordfamilyphotos.shutterfly.com/
We also added a hamster named Cassie to our family. She is a black bear hamster and Eleanor loves "to take care of her." She does not get to play with her a lot right now as Cassie is a baby hamster but as she grows it is going to be an interesting journey.
CF NEWS
The Clinical trial for the combo of the two drugs to cure the DF 508 gene has started. If successful this could be it!! To say we are excited is a HUGE understatement! :) Please pray that these trials are successful and that the FDA will approve the drug after the trial is complete. I will definately be keeping everyone updated on this trial.
We go to our CF clinic visit on Nov 16th. We are praying for a smooth visit as they are always stressful on Eleanor...
Eleanor Moments
There have been soooo many I can't list them all but here are a few highlights.
While I was gone to my grandmother's funeral in Ohio, Nanny and Bubs came down to keep Eleanor while Robert went to work. Robert called his mom to hear hysterical laughter on the other end. Bubs was on his hands and knees trying to open the magnetic door to our entertainment center so he could turn on the sound system. After the laughter stopped he heard Eleanor say to Bubs, "Let me help you Bubs!" Robert proceeded to tell his mother how to get it open...only to hear mid-conversation..."See that's what I am talking about!" Eleanor had opened the door for her Bubs. It was quite funny. :)
She has this habit of just laughing not fake laughing but infectious, belly laughing...
We were on the way home from the ice cream store (we went since she had a good day potty training) and Robert and I were talking in the front seat. All of the sudden we heard laughter from the back seat. We still have no idea what caused it...maybe it was just between her and God. It only took about fifteen seconds before we were all laughing so hard we were all crying...those are the moments that no money can buy!
She also loves to sing, she will break out singing all the time...her new favorite is No More Monkeys Jumping on the bed. But we were singing Jesus Love Me and she said, "I love Jesus!" Then she wanted to see Him. So we talked about Jesus and how he can come into our hearts...you could see those wheels turning. Later that day she looked at me out of the blue and said, " Jesus is in your heart (pointing to my heart) and in my heart (pointing to her heart)."
Not sure it gets any better than that!
Pray for my family and my extended family in our season of loss. Pray for Eleanor that she continues to grow not only physically but spiritually.
Thanks,
Coleen
Where to start...it has been a hard month. We lost two more family members in October. Robert's Aunt and my grandmother passed this month. This world lost two good Christian ladies. However, they are no longer suffering and are with Jesus. We rejoice for them!
Eleanor was on TOBI this month and it was a hard TOBI cycle this time. It started off rough with a cough after only a day and a half and the cough is still with us. It also seems to have sapped some of her energy. If you didn't know her you would probably think I was crazy but she is more run down after this cycle. I am happy that it is doing its job but am ready for a cure so we do not have to do this....
We went to the pumpkin patch in Niceville at the UMC. Eleanor had a blast!
She was smiling really good in this picture. She also went to the Peanut Festival with her Daddy, Nanny, Bubs, and cousins. I have uploaded these pictures on my share site. http://guilfordfamilyphotos.shutterfly.com/
We also added a hamster named Cassie to our family. She is a black bear hamster and Eleanor loves "to take care of her." She does not get to play with her a lot right now as Cassie is a baby hamster but as she grows it is going to be an interesting journey.
CF NEWS
The Clinical trial for the combo of the two drugs to cure the DF 508 gene has started. If successful this could be it!! To say we are excited is a HUGE understatement! :) Please pray that these trials are successful and that the FDA will approve the drug after the trial is complete. I will definately be keeping everyone updated on this trial.
We go to our CF clinic visit on Nov 16th. We are praying for a smooth visit as they are always stressful on Eleanor...
Eleanor Moments
There have been soooo many I can't list them all but here are a few highlights.
While I was gone to my grandmother's funeral in Ohio, Nanny and Bubs came down to keep Eleanor while Robert went to work. Robert called his mom to hear hysterical laughter on the other end. Bubs was on his hands and knees trying to open the magnetic door to our entertainment center so he could turn on the sound system. After the laughter stopped he heard Eleanor say to Bubs, "Let me help you Bubs!" Robert proceeded to tell his mother how to get it open...only to hear mid-conversation..."See that's what I am talking about!" Eleanor had opened the door for her Bubs. It was quite funny. :)
She has this habit of just laughing not fake laughing but infectious, belly laughing...
We were on the way home from the ice cream store (we went since she had a good day potty training) and Robert and I were talking in the front seat. All of the sudden we heard laughter from the back seat. We still have no idea what caused it...maybe it was just between her and God. It only took about fifteen seconds before we were all laughing so hard we were all crying...those are the moments that no money can buy!
She also loves to sing, she will break out singing all the time...her new favorite is No More Monkeys Jumping on the bed. But we were singing Jesus Love Me and she said, "I love Jesus!" Then she wanted to see Him. So we talked about Jesus and how he can come into our hearts...you could see those wheels turning. Later that day she looked at me out of the blue and said, " Jesus is in your heart (pointing to my heart) and in my heart (pointing to her heart)."
Not sure it gets any better than that!
Pray for my family and my extended family in our season of loss. Pray for Eleanor that she continues to grow not only physically but spiritually.
Thanks,
Coleen
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
Thursday, August 26, 2010
Updates and NEWS!
I have not kept my blog up like I should lately. Sorry about that! I am going to do better...
TOBI
We are doing quite well with Eleanor's TOBI but her cough is absolutely horrible! We were in O'Charley's the other day and she coughed (well one of many times) and the people who had just been placed next to us asked to move. Like they were going to "catch" what she had. THE NERVE of some people! Since we have decided that CF is not going to be our identity I did not get up and tell the man that I was 100% sure that my daughter would not get him sick. Robert handles these situations better than me...I was steamed for about five minutes and then decided not to let him ruin my meal. I guess my point is that I understand people are still probably concerned about the H1N1 virus and all but if you have ever heard Eleanor or any CFer cough you know that it does not sound like a normal cough. :)
Moving on...
Grami and Pawpaw came down visit this week and we went out to eat twice yesterday. Eleanor asked to go to get cheese dip and tomatoes when they first got here. (it was almost lunch time) She loves to eat her cheese dip, chips, a whole cup of tomatoes, and taco meat. The lady at the restaurant remembered us from last time and personally asked Eleanor what she wanted. Eleanor told her Cheese dip, tomatoes, and taco meat! We were eating our meal and the lady came back by and Eleanor decided she would share a tomato with her. The lady took the tomatoes from Eleanor's little hand and told her thank you. Then she ate it! She did this twice. As you can tell Eleanor did not take after her parents...she does not meet strangers!
Last night we ate out at Carrabba's and at the end of our meal when we were about to leave our waitress came up to the table and told us bye. Eleanor said, "Bye!" Then looked at the waitress and said, "I want to give you a hug!" I wish I had a picture of the waitress' face...it was priceless...she was not quite sure if Eleanor really meant it. So she asked Eleanor, "Do you want me to come give you a hug?" Eleanor responded, "Yes!" So the waitress came around the table and gave Eleanor a big hug. Eleanor then said, "Thanks!" The love of the Lord certainly shines through this little 2.5 year old. There is no other way to explain it! The power of the hug that she gave that waitress was tremendous. We left the waitress with the biggest smile she had on her face all night!
IN OTHER NEWS!
In other news, part of the reason I have not been posting so much is because I have been soooo tired lately. I would just crash when Eleanor would go down for her nap. Some of you probably already have it figured out. Eleanor is going to be a BIG Sister on April 19, 2011! We thought we were 8 weeks but after the appointment today we found out that we are actually 6.5 weeks along. The doctor was please with the way the baby looked on the ultrasound. We go to see her again in two weeks to make sure we are still progressing along like we should. We didn't tell everyone until 8 weeks with Eleanor but we decided to go ahead and tell people now.
Please pray for the baby that the Lord would put his hand on this baby the same way he covered and protected Eleanor while she was in me. I know I will feel better after the first trimester is over. We covet your prayers and will share updates as we get them.
Thanks!
Coleen
TOBI
We are doing quite well with Eleanor's TOBI but her cough is absolutely horrible! We were in O'Charley's the other day and she coughed (well one of many times) and the people who had just been placed next to us asked to move. Like they were going to "catch" what she had. THE NERVE of some people! Since we have decided that CF is not going to be our identity I did not get up and tell the man that I was 100% sure that my daughter would not get him sick. Robert handles these situations better than me...I was steamed for about five minutes and then decided not to let him ruin my meal. I guess my point is that I understand people are still probably concerned about the H1N1 virus and all but if you have ever heard Eleanor or any CFer cough you know that it does not sound like a normal cough. :)
Moving on...
Grami and Pawpaw came down visit this week and we went out to eat twice yesterday. Eleanor asked to go to get cheese dip and tomatoes when they first got here. (it was almost lunch time) She loves to eat her cheese dip, chips, a whole cup of tomatoes, and taco meat. The lady at the restaurant remembered us from last time and personally asked Eleanor what she wanted. Eleanor told her Cheese dip, tomatoes, and taco meat! We were eating our meal and the lady came back by and Eleanor decided she would share a tomato with her. The lady took the tomatoes from Eleanor's little hand and told her thank you. Then she ate it! She did this twice. As you can tell Eleanor did not take after her parents...she does not meet strangers!
Last night we ate out at Carrabba's and at the end of our meal when we were about to leave our waitress came up to the table and told us bye. Eleanor said, "Bye!" Then looked at the waitress and said, "I want to give you a hug!" I wish I had a picture of the waitress' face...it was priceless...she was not quite sure if Eleanor really meant it. So she asked Eleanor, "Do you want me to come give you a hug?" Eleanor responded, "Yes!" So the waitress came around the table and gave Eleanor a big hug. Eleanor then said, "Thanks!" The love of the Lord certainly shines through this little 2.5 year old. There is no other way to explain it! The power of the hug that she gave that waitress was tremendous. We left the waitress with the biggest smile she had on her face all night!
IN OTHER NEWS!
In other news, part of the reason I have not been posting so much is because I have been soooo tired lately. I would just crash when Eleanor would go down for her nap. Some of you probably already have it figured out. Eleanor is going to be a BIG Sister on April 19, 2011! We thought we were 8 weeks but after the appointment today we found out that we are actually 6.5 weeks along. The doctor was please with the way the baby looked on the ultrasound. We go to see her again in two weeks to make sure we are still progressing along like we should. We didn't tell everyone until 8 weeks with Eleanor but we decided to go ahead and tell people now.
Please pray for the baby that the Lord would put his hand on this baby the same way he covered and protected Eleanor while she was in me. I know I will feel better after the first trimester is over. We covet your prayers and will share updates as we get them.
Thanks!
Coleen
Saturday, July 31, 2010
Results
The results of her culture are in: she only has normal flora growing!!! Yeah, this means no psuedomonas! We are so excited!
We have been busy once again while we are off of the TOBI. We went up to help Nanny since she has not been feeling so well and then back home where we went to build-a-bear to get another outfit for Ellie courtesy of Nanny. I still have to take a picture of Ellie's fancy new dress but I will and post it. She is very fancy!
I some pictures and videos I will upload and share soon.
Coleen
We have been busy once again while we are off of the TOBI. We went up to help Nanny since she has not been feeling so well and then back home where we went to build-a-bear to get another outfit for Ellie courtesy of Nanny. I still have to take a picture of Ellie's fancy new dress but I will and post it. She is very fancy!
I some pictures and videos I will upload and share soon.
Coleen
Monday, July 26, 2010
Clinic Visit
We just arrived back home from our clinic visit. In most ways it was a great visit, but Eleanor does not like going to her appointments.
On the way over she knew that something was not quite right. She kept asking Robert and I when we were going to go home. When we pulled into the parking lot at Sacred Heart and we told her that we were going to see Dr. VanHook she lost it. She started crying and saying she wanted to go home. Bless her, all she remembers is getting her picc line out and the pain it caused.
After we assured her there would be no "ouchies" and that Ellie would have her chest listened to show Eleanor how easy it was she calmed down and did okay...until we got to the receptionist desk then she started crying again. We did some talking and distracting the tears subsided.
The nurse came out to get us and she did fine through the listening for her heartbeat, her O2 stats (99), her height (34.8 inches) and her weight (28.7 lbs). However, taking her temperature in her ear did not go well. We got through it and went to our room.
Dr. VanHook came in and she listened to Ellie and pronounced her healthy and Eleanor was then ready to go home! She was not ready to take her turn with the stethoscope. We just talked with Dr. VanHook about her appetite, BM's, new enzyme's, and the new psuedomonas drug. Eleanor is in the 75th percentile on the BMI (body mass index) chart and that is awesome for a child with CF!
Eleanor then decided to talk with Dr. VanHook about her animals and a summary of what we have done this summer. She did finally let us listen to her chest. Dr. VanHook is so very patient with us. Daddy held the stethoscope to her chest and back and we were done. Her chest sounds great!
Then the BAD part comes. She knows the man who takes her culture's voice. She heard him in the hallway and started crying. Poor thing. Robert and I had to hold her down and we finally got her culture....I do NOT like those!
After we were done Glen, the man who does her cultures, asked for a hug and she went and gave him one. It was all okay now that it was over. She even gave him a high-five.
We had a good visit. We are now just waiting on the culture results.
We went to the Gulfarium the other day, I will post about it soon. Eleanor had a blast!
Coleen
On the way over she knew that something was not quite right. She kept asking Robert and I when we were going to go home. When we pulled into the parking lot at Sacred Heart and we told her that we were going to see Dr. VanHook she lost it. She started crying and saying she wanted to go home. Bless her, all she remembers is getting her picc line out and the pain it caused.
After we assured her there would be no "ouchies" and that Ellie would have her chest listened to show Eleanor how easy it was she calmed down and did okay...until we got to the receptionist desk then she started crying again. We did some talking and distracting the tears subsided.
The nurse came out to get us and she did fine through the listening for her heartbeat, her O2 stats (99), her height (34.8 inches) and her weight (28.7 lbs). However, taking her temperature in her ear did not go well. We got through it and went to our room.
Dr. VanHook came in and she listened to Ellie and pronounced her healthy and Eleanor was then ready to go home! She was not ready to take her turn with the stethoscope. We just talked with Dr. VanHook about her appetite, BM's, new enzyme's, and the new psuedomonas drug. Eleanor is in the 75th percentile on the BMI (body mass index) chart and that is awesome for a child with CF!
Eleanor then decided to talk with Dr. VanHook about her animals and a summary of what we have done this summer. She did finally let us listen to her chest. Dr. VanHook is so very patient with us. Daddy held the stethoscope to her chest and back and we were done. Her chest sounds great!
Then the BAD part comes. She knows the man who takes her culture's voice. She heard him in the hallway and started crying. Poor thing. Robert and I had to hold her down and we finally got her culture....I do NOT like those!
After we were done Glen, the man who does her cultures, asked for a hug and she went and gave him one. It was all okay now that it was over. She even gave him a high-five.
We had a good visit. We are now just waiting on the culture results.
We went to the Gulfarium the other day, I will post about it soon. Eleanor had a blast!
Coleen
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