I know I promised a different post next...but sometimes things come up...you know, those moments that take my breath away, and today I had one of those moments!
For once we went to a specialists office and left with incredible news! Eagle went for a follow-up appointment with his Pulmonologist (Lung Specialist) today and even the doctor was amazed with Eagle's progress over the course of the last three months.
Three months ago when we were in his office, my son's lung condition was so bad that he should have been hospitalized. It was thought that he must have some other condition, syndrome or disease that was attacking his lungs and that he didn't have Asthma at all. He was tested for Cystic Fibrosis, and considered to possibly have Lupus (both of which do run in my family). His Cystic Fibrosis test was negative (as we expected it to be, since I was genetically tested before undergoing infertility treatment and so we knew I was not a carrier of the disease) and Lupus is so difficult to test for, we decided not to do the test. At their best functioning level the large branches in his lungs were only functioning at 18% and the small branches were only functioning at 44%. His condition was literally life threatening, as just losing 10% of his lung function during an Asthma attack would have cost him his life! His condition was also chronic and this was the way my son had lived his life for the past 6 1/2 years since he was 2 years old.
Today, his lung specialist looked at me with the biggest smile and he said "To say I am pleased is an understatement, I am beyond impressed". Even he didn't think my son would ever have "normal" lung function. At best he hoped to get him into a safe level of lung function, so that the slightest change in his breathing wouldn't be so life threatening for him. Three months ago, he told me that my son wouldn't be able to play basketball this year because he didn't have enough lung function to make it down the court. Today, he explained to me that my son's lungs are 15% bigger than a "normal" child's lungs because of the inflammation and that when he's breathing his best...he's probably breathing better than anyone on that basketball team! Now both sets branches in his lungs are each functioning at 118% (that's 400% better than they were functioning at his last visit) and he now ranks in the top 10th percentile of "normal" lung function for kids his age. Furthermore, he explained that there is not one medical study that supports the theory that allergy shots have any effect on an allergic reaction in the lungs. Therefore, the choice of whether or not he will endure weekly allergy shots is entirely up to Eagle because getting allergy shots would have no direct impact on his well being, but would rather only make him more comfortable (less stuffy, less puffy). The Pulmonologist does not want Eagle exposed to allergins that we know trigger a response in his lungs, as just one set back could be very costly for him! Our own pets are not a concern as far as his lungs are concerned, as he would not have made this improvement if they triggered an asthmatic response, but he will still not be able to visit our friends who have cats as this is one of his biggest known asthma triggers.
In three months, we will return for another check-up. If he does not have a flare up within those three months, we will then attempt to lower his dosage of this miracle drug. This new drug does come with it's many risks and our hope is that we will not have to keep him on this particular drug for a very lengthy amount of time. The longer he goes without an episode or flare-up, the more the inflamation in his lungs will go away. If he stays stabilized for a year and has no setbacks, it is possible that his condition will be very mild or better yet...gone. We know it's a long shot and we know with his history anything can happen. There is also a risk that his lungs will become immune to this drug and his condition could deteriorate very quickly.
Today, I feel such a relief and I am breathing easier myself. I think of what we have gone through all of these years. The times he had to be rushed to the hospital or to his asthma specialist's office because the hospital never seemed to think he was having an asthma attack. I replay those most frightful times...like the day he grabbed his throat as if he were choking right before he collapsed on the ground unable to breath, or the time his lips were gray and he was vomitting thick mucus....the number of times he had a mucus plug blocking his airway or most recently the sheer panic he would experience when he couldn't breath and the anxiety he has now developed because he thought he was dying during the last few attacks he had. I remember the fear I had with each of those attacks and how hard I tried to always stay calm and reassure him that he was ok, even if I wondered if he could be nearing his last breath. I think of the years and years of frustration and how I fought to get family members to believe he had anything wrong with him and to take his condition seriously.
Just as we do with everything else...we take one day at a time. Today, that specialist saw a completely different child than he saw three months ago. He saw a child who has been reborn...a child who has recently discovered what being able to breath is like...a child who is breathing like never before.....and this is definately a moment that takes my breath away!
Showing posts with label Asthma. Show all posts
Showing posts with label Asthma. Show all posts
Friday, January 28, 2011
Tuesday, November 30, 2010
Eagle's Med Pak
Eagle has lots of medications that he has to carry everywhere he goes! In a desperate attempt to get his asthma under control...his medications seem to change montly! Keeping track of everything and keeping everyone he goes with informed and up to date, tends to get very difficult and his backpack gets really messy and unorganized! I have searched desperately for a better bag to organize his equipment/meds and have had no luck...so, I found a better way to organize everthing myself!
Eagle is also getting to a point where he is better able to understand the medications he takes and learning when he needs them, so I also wanted to come up with a system that would help him to be more independent and able to help others understand what he needs and when he needs it and I'm happy to say I found a way to get everything I wanted!
I found some extremely useful websites that has great printables! I found this wonderful Asthma Daily Diary. Here he will log his peak flow readings in the proper row and it will instantly tell him what color area he is in and he will know just what med pak to get his meds from! This will also be a great way to keep track of how he's doing and it's a great way to keep track of what meds he is using and when!
I also found a website where we can print off his current medication list (complete with pictures) and a medication checklist.
Here's how everything ended up!
I made him a folder to keep in his bag. His folder contains very important medical information and all of the phone numbers for his pediatrician, lung specialist and allergist! In his folder I used presentation sheet protectors to not only protect some sheets from getting damaged, but so that we could reuse one of his daily sheets (he will use a dry erase marker). The first sheet in his folder is his Asthma Action Plan (in a sheet protector). The next sheet (in a sheet protector) is the list of his current medications (this contains when he takes them, what each medication is used for and also a picture of the medication). The next sheet is a Weekly Med Checklist. On this sheet all of his medications are listed, along with the dosage and time it needs to be taken. Each medication has a checkbox for each day of the week. He will use a dry erase marker to mark off when he takes each medication. At the end of the week, I will transfer this info to a monthly record sheet which we can take to his appointments to his lung specialist. Next he has a few months worth of Daily Asthma Diaries. This is where he will record his daily peak flows. There is also a space for daily triggers and symptoms and a place to log any extra medications. No more guessing how often he needs his relief meds! These diaries are perfect to take along to his appointments also! This folder contains a wealth of information and is a great communication tool to help everyone understand what medications he takes, why and when!
Instead of his medications all being thrown in his bag, kept in ziplock bags, etc.....they are all now, neatly organized in boxes which are color coded or labeled!
He has his allergy emergency kit (his epi pen) that has to be kept with him, due to his rare "cold" allergy, that can easily send him into anaphlactic shock.
He has his peak flow meter, which he uses twice a day to help monitor how his lungs are doing. I hope to get him a Microlife Digital Peak Flow Monitor soon, since he will now be very dependent on this little piece of equipment. A digital meter will give a more accurate reading and it would also keep a record of his readings.
He has his Daily Box which is color coded green, to match his green section on his Asthma Action Plan. This box contains all the medications that he will take everyday, regardless of how he is feeling.
He has a box (which is now a red box to match his red zone on his Asthma Action Plan) labeled "Yellow and Red Zone". This box contains emergency relief medications that he needs if he is in the red or yellow zone on his Asthma Action Plan.
He has a box (In the market for a yellow one) that is labeled "As Needed". This box contains medications that he takes either when he is going to be exposed to a known asthma trigger or when he is having allergy symptoms. It also contains an extra emergency relief inhaler.
Along with his folder, he will also carry his "warm air mask", a special mask that warms the air that he breathes. Since he is allergic to "cold" breathing in cold air is a double danger for him, because it is not only an asthma trigger (a response in his lungs) but it is also an allergy trigger and this can swell his esophagus shut. He's had this mask for a long time and he is in need of a new one...they have some great ones out now, so I can't wait to get him a new one! Since he may develop little to no immunity to respiratory illnesses, he also has a bag full of disposable masks so that he will have one readily available if he is around anyone who has a known respiratory illness...hopefully, this will cut back on some of the germs that may make him sick. He also will carry Purell to help cut down on germs he is exposed to!
I'm so happy that his bag will not only be better organized, but it will be easier for anyone else to understand how to better care for him and it will also help him to be better able to be a little bit more independent with his own care...as he is going to have to learn how to take care of himself medically, just the same as little Johnny down the street has to learn how to brush his own teeth! I hope in time, I can also be a little bit more at ease when he is in the care of someone else!
Eagle is also getting to a point where he is better able to understand the medications he takes and learning when he needs them, so I also wanted to come up with a system that would help him to be more independent and able to help others understand what he needs and when he needs it and I'm happy to say I found a way to get everything I wanted!
I found some extremely useful websites that has great printables! I found this wonderful Asthma Daily Diary. Here he will log his peak flow readings in the proper row and it will instantly tell him what color area he is in and he will know just what med pak to get his meds from! This will also be a great way to keep track of how he's doing and it's a great way to keep track of what meds he is using and when!
I also found a website where we can print off his current medication list (complete with pictures) and a medication checklist.
Here's how everything ended up!
I made him a folder to keep in his bag. His folder contains very important medical information and all of the phone numbers for his pediatrician, lung specialist and allergist! In his folder I used presentation sheet protectors to not only protect some sheets from getting damaged, but so that we could reuse one of his daily sheets (he will use a dry erase marker). The first sheet in his folder is his Asthma Action Plan (in a sheet protector). The next sheet (in a sheet protector) is the list of his current medications (this contains when he takes them, what each medication is used for and also a picture of the medication). The next sheet is a Weekly Med Checklist. On this sheet all of his medications are listed, along with the dosage and time it needs to be taken. Each medication has a checkbox for each day of the week. He will use a dry erase marker to mark off when he takes each medication. At the end of the week, I will transfer this info to a monthly record sheet which we can take to his appointments to his lung specialist. Next he has a few months worth of Daily Asthma Diaries. This is where he will record his daily peak flows. There is also a space for daily triggers and symptoms and a place to log any extra medications. No more guessing how often he needs his relief meds! These diaries are perfect to take along to his appointments also! This folder contains a wealth of information and is a great communication tool to help everyone understand what medications he takes, why and when!
Instead of his medications all being thrown in his bag, kept in ziplock bags, etc.....they are all now, neatly organized in boxes which are color coded or labeled!
He has his allergy emergency kit (his epi pen) that has to be kept with him, due to his rare "cold" allergy, that can easily send him into anaphlactic shock.
He has his peak flow meter, which he uses twice a day to help monitor how his lungs are doing. I hope to get him a Microlife Digital Peak Flow Monitor soon, since he will now be very dependent on this little piece of equipment. A digital meter will give a more accurate reading and it would also keep a record of his readings.
He has his Daily Box which is color coded green, to match his green section on his Asthma Action Plan. This box contains all the medications that he will take everyday, regardless of how he is feeling.
He has a box (which is now a red box to match his red zone on his Asthma Action Plan) labeled "Yellow and Red Zone". This box contains emergency relief medications that he needs if he is in the red or yellow zone on his Asthma Action Plan.
He has a box (In the market for a yellow one) that is labeled "As Needed". This box contains medications that he takes either when he is going to be exposed to a known asthma trigger or when he is having allergy symptoms. It also contains an extra emergency relief inhaler.
Along with his folder, he will also carry his "warm air mask", a special mask that warms the air that he breathes. Since he is allergic to "cold" breathing in cold air is a double danger for him, because it is not only an asthma trigger (a response in his lungs) but it is also an allergy trigger and this can swell his esophagus shut. He's had this mask for a long time and he is in need of a new one...they have some great ones out now, so I can't wait to get him a new one! Since he may develop little to no immunity to respiratory illnesses, he also has a bag full of disposable masks so that he will have one readily available if he is around anyone who has a known respiratory illness...hopefully, this will cut back on some of the germs that may make him sick. He also will carry Purell to help cut down on germs he is exposed to!
I'm so happy that his bag will not only be better organized, but it will be easier for anyone else to understand how to better care for him and it will also help him to be better able to be a little bit more independent with his own care...as he is going to have to learn how to take care of himself medically, just the same as little Johnny down the street has to learn how to brush his own teeth! I hope in time, I can also be a little bit more at ease when he is in the care of someone else!
Saturday, November 27, 2010
Worry can not overshadow thankfulness!
I've always loved this time of year! From the wonderful colors of fall and time to think about all the things we are thankful for to the miracles of Christmas and looking forward to the start of a new year.
For the past few years, it has seemed that at this particular time of year, as we focus on all that we are thankful for, it is somewhat overshadowed by some bad news we’ve received just prior to these holidays. It has been my mother’s health that has been the biggest worry. At the same time, we have been so blessed to have yet another holiday with her, and for that we are so grateful for! If there is one thing we have learned these last few years, it’s not to take these days for granted!
This year, just a day before Thanksgiving…Eagle had his first appointment with a Pulmonologist. We should have had this appointment years ago, as he was diagnosed with Asthma when he was 2. A condition in which was expected to improve and go away by the time he was 5. Instead, his condition has never been controlled and has continually gotten worse. Many times he has had “attacks” that sent him to the emergency room, and each time, we were sent away with every diagnosis except an asthma attack! There have been times when he has grabbed his neck and collapsed to the ground unable to breathe. There have been times when his lips have turned blue and he has repeatedly thrown up with mucus nearly foaming at his mouth. During an attack like this, he was once diagnosed with the stomach flu, receiving no asthma related treatment and this was the last time he went to the ER during office hours! From this time forward, he was treated by his Asthma Specialist on an emergency basis, who explained to me that this incident was caused by a “mucus plug” and that part of his lung probably collapsed. Anytime he had an attack during office hours, we could go to his specialists’ office and she would treat him with a special pressurized machine when he would get mucus plugs. This procedure took nearly 3 hours, but it was well worth the wait (even with 6 bored children) and we went through this numerous times. Most recently, he has experienced panic and episodes of hyperventilation and has developed severe anxiety.
I have always been very in tune to Eagle and most of the time I can easily tell when he is in trouble, which has been a good thing for him, because people who aren't around him a lot don't pick up on the signs and up until recently, he was really unable to communicate that he was having trouble (another blog, another time). I have been very overprotective in allowing him to be with people, who aren’t knowledgeable with his condition and/or how to treat him when he is in trouble. A behavior that has always been driven by an overwhelming fear that his condition is far worse than anyone knows and/or will accept and fear that one of these attacks would rob him of his last breath. I have this overwhelming need to protect him, the best that I can. There have been times when I have not allowed him to spend a weekend with his father or that I have asked his asthma specialist to convey the seriousness of Eagle’s condition to his father. I allow him visits with his grandmother, but I do not allow him to visit her at her house. I very rarely allow him to visit my own brother at his house, unless I’m there. I will probably always be this way!
A few years ago, a pediatrician noticed that he was on an unusual amount of asthma medications and she suggested that he should later be tested for other lung diseases. We moved and we found a new asthma specialist, who has desperately but unsuccessfully tried getting his asthma under control. He did seem to have a period of doing well, but this was very short lived. His attacks got worse and he developed terrible anxiety and panic with his attacks. After 2 episodes of pure panic and a few more visits to the ER…I demanded that he be refered to a Pulmonary Specialist, as there was no way we could live like this. His pediatrician sent him for a PFT (Pulmonary Function Test). The test results showed that he indeed did have abnormal lung function, but they felt the results were within the asthmatic range. Still, he was given a referral to the Pulmonologist.
At his first appointment, before seeing the doctor, they performed another Pulmonary Function Test. When we saw the specialist….he was amazed that Eagle could seemingly function so well in his current condition. He asked Eagle how he felt that day and if he felt like he could breathe ok. Eagle said he felt fine and that he was breathing fine. The specialist listened to Eagle’s chest and noted he heard no wheezing and that it sounded like he was moving air fine. The test they did during that visit showed something very different. This is why we have such a problem when we go to the ER and why other family members have such a problem accepting that anything is wrong with him….he “looks and behaves fine” and to a trained ear…he even sounds fine! The pulmonary function test showed that at best, the large branches in Eagle’s lungs are functioning at 44% and the small branches are functioning at only 17%. On the day of this visit, his peak flow level was 90 (a number that should be between 180 and 200) and amazingly, his oxygen level was at 98%. The specialist emphasized how serious my son’s condition was and I was very offended to be told that I take my son’s condition too lightly! Me, the one who has freaked out and has been completely overprotective since this child was 3….the one who worries about who he’s with, where he goes, etc, etc...the one who complains about how no one else takes this seriously!
A mother’s intuition is such a powerful thing and I finally had proof to what my gut has screamed all along, so it didn’t really matter that this doctor had no clue how seriously I took my son’s condition….I finally have someone who can figure out what is wrong with my son and I pray that it’s not too late for him to help him!
Eagle was put on a 3 week dose of steroids and the highest dosage of a new lung medication (a rare one, which I found out…no pharmacy carries in stock). I understand that the benefits far outweigh the risks, but I sure don’t like that it carries a "black box warning". Even though this isn't the first black box warning drug he has taken, there is still some level of uneasiness using such a drug. I researched this new drug and found that it is usually given as a last resort and to children over the age of 12. As with all drugs, this obviously has some side effects, I'm not to fond of the ones that this drug carries either...loss of bone density, reduced growth, immunosuppression, adrenal suppression and increase in asthma related deaths (this one is hard for me to swallow)! I have to remind myself that no other treatments have worked and that he can not continue to live in his current condition...this is a last resort! He will continue to take his 4 other asthma medications along with this new drug. He was given a new Asthma Action Plan and I was told how to handle emergencies in the ER from now on. I was told that he should be admitted in the hospital with any peak flow reading of 150 or under. I was allowed to take him home the other day, only because his condition was chronic and because he was behaving normally. The specialist says that Eagle is to a point where his body has simply adjusted to this way of living, but that he can not live this way! If he had normal lung function right now, he would be in a panic saying that he is unable to breathe, but for now…this is normal for him. This doctor suspects that when Eagle gets to the point where he is saying he can’t breathe and is to the point of being in a panic…he thinks that he would only be functioning at a total lung function of 20% and that would be life threatening for Eagle.
Right now…my son should be admitted in the hospital and listed in “critical” condition…and he is instead, enjoying an extended weekend with his father J Can you be any more thankful than that? I didn’t get to spend this Thanksgiving with him and while I am so thankful that he is able to function so “normally” in his current condition…I am scared to death! I know how quickly his condition can deteriorate, as I have seen it many times before! I fear what the future holds for him, but I will remain hopeful! For now…the steroids are working, as his father reports his peak flows are hitting 200 :D
On Monday, he will have his Cystic Fibrosis testing (as this does run in my family and he is obviously exhibiting symptoms of the disease). Next month, he will have some blood allergy testing done and in January, if his condition has not improved under the new treatment plan…he will be tested for many auto immune disorders/diseases, as at that point it will be assumed that there may some disease attacking his lungs.
So, while this Thanksgiving was partly overshadowed with worry…we still had so much to be thankful for and we are so blessed!
Cardinal’s choir performed downtown during the lighting of the Christmas Tree and she was in the parade! We had a wonderful time enjoying the holiday festivites!
For the past few years, it has seemed that at this particular time of year, as we focus on all that we are thankful for, it is somewhat overshadowed by some bad news we’ve received just prior to these holidays. It has been my mother’s health that has been the biggest worry. At the same time, we have been so blessed to have yet another holiday with her, and for that we are so grateful for! If there is one thing we have learned these last few years, it’s not to take these days for granted!
 |
| My mom and Cardinal on Thanksgiving |
 |
| Group picture of cousins (a few are missing) |
 |
| Cardinal, Macaw and Duckling Thanksgiving 2010 |
This year, just a day before Thanksgiving…Eagle had his first appointment with a Pulmonologist. We should have had this appointment years ago, as he was diagnosed with Asthma when he was 2. A condition in which was expected to improve and go away by the time he was 5. Instead, his condition has never been controlled and has continually gotten worse. Many times he has had “attacks” that sent him to the emergency room, and each time, we were sent away with every diagnosis except an asthma attack! There have been times when he has grabbed his neck and collapsed to the ground unable to breathe. There have been times when his lips have turned blue and he has repeatedly thrown up with mucus nearly foaming at his mouth. During an attack like this, he was once diagnosed with the stomach flu, receiving no asthma related treatment and this was the last time he went to the ER during office hours! From this time forward, he was treated by his Asthma Specialist on an emergency basis, who explained to me that this incident was caused by a “mucus plug” and that part of his lung probably collapsed. Anytime he had an attack during office hours, we could go to his specialists’ office and she would treat him with a special pressurized machine when he would get mucus plugs. This procedure took nearly 3 hours, but it was well worth the wait (even with 6 bored children) and we went through this numerous times. Most recently, he has experienced panic and episodes of hyperventilation and has developed severe anxiety.
I have always been very in tune to Eagle and most of the time I can easily tell when he is in trouble, which has been a good thing for him, because people who aren't around him a lot don't pick up on the signs and up until recently, he was really unable to communicate that he was having trouble (another blog, another time). I have been very overprotective in allowing him to be with people, who aren’t knowledgeable with his condition and/or how to treat him when he is in trouble. A behavior that has always been driven by an overwhelming fear that his condition is far worse than anyone knows and/or will accept and fear that one of these attacks would rob him of his last breath. I have this overwhelming need to protect him, the best that I can. There have been times when I have not allowed him to spend a weekend with his father or that I have asked his asthma specialist to convey the seriousness of Eagle’s condition to his father. I allow him visits with his grandmother, but I do not allow him to visit her at her house. I very rarely allow him to visit my own brother at his house, unless I’m there. I will probably always be this way!
A few years ago, a pediatrician noticed that he was on an unusual amount of asthma medications and she suggested that he should later be tested for other lung diseases. We moved and we found a new asthma specialist, who has desperately but unsuccessfully tried getting his asthma under control. He did seem to have a period of doing well, but this was very short lived. His attacks got worse and he developed terrible anxiety and panic with his attacks. After 2 episodes of pure panic and a few more visits to the ER…I demanded that he be refered to a Pulmonary Specialist, as there was no way we could live like this. His pediatrician sent him for a PFT (Pulmonary Function Test). The test results showed that he indeed did have abnormal lung function, but they felt the results were within the asthmatic range. Still, he was given a referral to the Pulmonologist.
At his first appointment, before seeing the doctor, they performed another Pulmonary Function Test. When we saw the specialist….he was amazed that Eagle could seemingly function so well in his current condition. He asked Eagle how he felt that day and if he felt like he could breathe ok. Eagle said he felt fine and that he was breathing fine. The specialist listened to Eagle’s chest and noted he heard no wheezing and that it sounded like he was moving air fine. The test they did during that visit showed something very different. This is why we have such a problem when we go to the ER and why other family members have such a problem accepting that anything is wrong with him….he “looks and behaves fine” and to a trained ear…he even sounds fine! The pulmonary function test showed that at best, the large branches in Eagle’s lungs are functioning at 44% and the small branches are functioning at only 17%. On the day of this visit, his peak flow level was 90 (a number that should be between 180 and 200) and amazingly, his oxygen level was at 98%. The specialist emphasized how serious my son’s condition was and I was very offended to be told that I take my son’s condition too lightly! Me, the one who has freaked out and has been completely overprotective since this child was 3….the one who worries about who he’s with, where he goes, etc, etc...the one who complains about how no one else takes this seriously!
A mother’s intuition is such a powerful thing and I finally had proof to what my gut has screamed all along, so it didn’t really matter that this doctor had no clue how seriously I took my son’s condition….I finally have someone who can figure out what is wrong with my son and I pray that it’s not too late for him to help him!
Eagle was put on a 3 week dose of steroids and the highest dosage of a new lung medication (a rare one, which I found out…no pharmacy carries in stock). I understand that the benefits far outweigh the risks, but I sure don’t like that it carries a "black box warning". Even though this isn't the first black box warning drug he has taken, there is still some level of uneasiness using such a drug. I researched this new drug and found that it is usually given as a last resort and to children over the age of 12. As with all drugs, this obviously has some side effects, I'm not to fond of the ones that this drug carries either...loss of bone density, reduced growth, immunosuppression, adrenal suppression and increase in asthma related deaths (this one is hard for me to swallow)! I have to remind myself that no other treatments have worked and that he can not continue to live in his current condition...this is a last resort! He will continue to take his 4 other asthma medications along with this new drug. He was given a new Asthma Action Plan and I was told how to handle emergencies in the ER from now on. I was told that he should be admitted in the hospital with any peak flow reading of 150 or under. I was allowed to take him home the other day, only because his condition was chronic and because he was behaving normally. The specialist says that Eagle is to a point where his body has simply adjusted to this way of living, but that he can not live this way! If he had normal lung function right now, he would be in a panic saying that he is unable to breathe, but for now…this is normal for him. This doctor suspects that when Eagle gets to the point where he is saying he can’t breathe and is to the point of being in a panic…he thinks that he would only be functioning at a total lung function of 20% and that would be life threatening for Eagle.
Right now…my son should be admitted in the hospital and listed in “critical” condition…and he is instead, enjoying an extended weekend with his father J Can you be any more thankful than that? I didn’t get to spend this Thanksgiving with him and while I am so thankful that he is able to function so “normally” in his current condition…I am scared to death! I know how quickly his condition can deteriorate, as I have seen it many times before! I fear what the future holds for him, but I will remain hopeful! For now…the steroids are working, as his father reports his peak flows are hitting 200 :D
On Monday, he will have his Cystic Fibrosis testing (as this does run in my family and he is obviously exhibiting symptoms of the disease). Next month, he will have some blood allergy testing done and in January, if his condition has not improved under the new treatment plan…he will be tested for many auto immune disorders/diseases, as at that point it will be assumed that there may some disease attacking his lungs.
So, while this Thanksgiving was partly overshadowed with worry…we still had so much to be thankful for and we are so blessed!
Cardinal’s choir performed downtown during the lighting of the Christmas Tree and she was in the parade! We had a wonderful time enjoying the holiday festivites!
 |
| Emu enjoying a ride on the Scrambler! |
 |
Duckling and Macaw having a blast! |
This week we will put up our Christmas tree and decorate our house. We look forward to spending this holiday season with family and friends and we will enter into the new year with hope!
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