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 clinic visits. Show all posts
Showing posts with label clinic visits. Show all posts
Tuesday, April 3, 2012
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
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
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!!!
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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