Hey guys I get asked alot about Connors health so I decided to spill the beans about everything here.
Connor sees three specialist. Pulmonologist ( Lung doctor), Ent ( Ear, Nose, and throat doctor), and we recently added a Ophthalmologist ( Eye doctor).
Connor sees his Pulmonologist every 3 months. Connors has scarring in his right lung. It can be from one of two things, possibly at some point he aspirated on food, or when he has pneumonia some mucus was in his lung so long that it left permanent damage. We are hopeful that when he is older and has grown more that we wont have to be as concerned and watch it so closely. Connor is on a medication called budesonide which is a steroid he takes twice daily by breathing treatments. He started on it not long after his hospital stay with pneumonia and it has helped tremendously. We have even been able to cut it back to once a day this summer, however we will probably have to go back to twice a day during the winter months. This medication keeps his lungs strong and prevents any problems however if he is already sick this medicine wont do much to improve anything. Its merely a preventative. When Connor gets a cold it is crucial that we immediately began albuterol. He takes this medication on a as needed basis. If I hear any rattling or cough he takes it every 4 to 6 hours until he is no longer sick. This is also taken as a breathing treatment. Connor also has asthma so he has a emergency inhaler that we carry with us. He has never had an attack with us and we are very thankful!!! Connor is a trooper for his breathing treatments and the worst part is having to be still for the 5-10 minutes that they take.
Connor began seeing a ENT after having a ear infection for over 12 weeks back to back. Connor had tubes put in his ears in January (2017) and since then has had no trouble. He had lots on fluid on his ears and was likely hearing like he was under water. Connor was keeping constant colds and getting tubes in his ears helped with that tremendously as well. Connor had a hearing test after getting tubes, but would not comply for the test so he had a ABR hearing test done. ABR stands for Auditory Brainstem Response. In my own words he was put to sleep and hooked up to machines sounds were played and they could tell if and when he could hear them due to his brain activity. We were thrilled to learn that Connor hears fine. Connor gets extremely impacted ears due to too much wax being produced. There is nothing we can do about this, but let his ent clean them out often. They use a metal scalpel and dig out the wax. Connor goes to the ENT every 6 months for this and to have his tubes checked. This is Connor immediately after his (ear) tube surgery.
Connor recently went to the Ophthalmologist ( Eye doctor). We were thrilled to learn that they think his actual vision is good. Connor has nystagmus ( which was suspected even from the orphanage.) Nystagmus is when the eyes involuntarily move. In Connors case they jerk back and forth horizontally. His case is mild and nothing can be done for it. Connors right eye turns in when he looks at things. We had never noticed the left eye doing this until the eye doctor covered the right eye and immediately the left eye turned in. The verdict is his eye muscles are very weak. This may not seem like a huge deal except when this happens he sees two different images. What happens is his brain learns to ignore one eye so that he is not seeing double imagines. The problem is if we do not correct this eventually his brain will learn to always ignore the one eye. So we patch Connors eyes for two hours a day alternating eyes each day. The hope is that this will strengthen his eye muscles. We go back to the eye doctor in October to see if its working. If it hasnt worked we will discuss surgery. If it is working we will probably patch for a few more months and see if they continue strengthening. I really thought Connor would throw a fit over patching in the beginning, but this boy continues to amaze me!!! The very first time I put the patch on he laughed and played like nothing was up and has never tried to take the patch off. This is a picture of how his eye turns in. He was making a face at me so he does not normally hold his head at a angle to look at things he just happens to be doing that here.
We are also watching Connors weight. He weighed 22 pounds when he came home. He gained up to 25 and has stayed at the 25/26 mark for a year and a half now. While he has grew alot taller he has not gained any weight. Since he eats ALOT this is a concern even with him being so active. We will go back to his pediatrician in 6 months to see if he has gained any. If he hasnt we will begin running test and trying to determine the cause. As much as I love him being my little baby It breaks my heart to see all his ribs and bones. He is drinking lots of ensure and we are hoping it will help.
Compared to where we were at this time last year Connor is doing wonderful healthwise. Since most of his sickness came in the fall/ winter time we are anxious to see what this year will be like. We are hopeful that it will be a much better year this year. Connor is a tough boy and he is so brave for all medical test and procedures. He has had more things thrown hes way than some do in a lifetime and yet he is always smiling and showing the world that we have so much to be joyful about.
Connor sees three specialist. Pulmonologist ( Lung doctor), Ent ( Ear, Nose, and throat doctor), and we recently added a Ophthalmologist ( Eye doctor).
Connor sees his Pulmonologist every 3 months. Connors has scarring in his right lung. It can be from one of two things, possibly at some point he aspirated on food, or when he has pneumonia some mucus was in his lung so long that it left permanent damage. We are hopeful that when he is older and has grown more that we wont have to be as concerned and watch it so closely. Connor is on a medication called budesonide which is a steroid he takes twice daily by breathing treatments. He started on it not long after his hospital stay with pneumonia and it has helped tremendously. We have even been able to cut it back to once a day this summer, however we will probably have to go back to twice a day during the winter months. This medication keeps his lungs strong and prevents any problems however if he is already sick this medicine wont do much to improve anything. Its merely a preventative. When Connor gets a cold it is crucial that we immediately began albuterol. He takes this medication on a as needed basis. If I hear any rattling or cough he takes it every 4 to 6 hours until he is no longer sick. This is also taken as a breathing treatment. Connor also has asthma so he has a emergency inhaler that we carry with us. He has never had an attack with us and we are very thankful!!! Connor is a trooper for his breathing treatments and the worst part is having to be still for the 5-10 minutes that they take.
Connor began seeing a ENT after having a ear infection for over 12 weeks back to back. Connor had tubes put in his ears in January (2017) and since then has had no trouble. He had lots on fluid on his ears and was likely hearing like he was under water. Connor was keeping constant colds and getting tubes in his ears helped with that tremendously as well. Connor had a hearing test after getting tubes, but would not comply for the test so he had a ABR hearing test done. ABR stands for Auditory Brainstem Response. In my own words he was put to sleep and hooked up to machines sounds were played and they could tell if and when he could hear them due to his brain activity. We were thrilled to learn that Connor hears fine. Connor gets extremely impacted ears due to too much wax being produced. There is nothing we can do about this, but let his ent clean them out often. They use a metal scalpel and dig out the wax. Connor goes to the ENT every 6 months for this and to have his tubes checked. This is Connor immediately after his (ear) tube surgery.
Connor recently went to the Ophthalmologist ( Eye doctor). We were thrilled to learn that they think his actual vision is good. Connor has nystagmus ( which was suspected even from the orphanage.) Nystagmus is when the eyes involuntarily move. In Connors case they jerk back and forth horizontally. His case is mild and nothing can be done for it. Connors right eye turns in when he looks at things. We had never noticed the left eye doing this until the eye doctor covered the right eye and immediately the left eye turned in. The verdict is his eye muscles are very weak. This may not seem like a huge deal except when this happens he sees two different images. What happens is his brain learns to ignore one eye so that he is not seeing double imagines. The problem is if we do not correct this eventually his brain will learn to always ignore the one eye. So we patch Connors eyes for two hours a day alternating eyes each day. The hope is that this will strengthen his eye muscles. We go back to the eye doctor in October to see if its working. If it hasnt worked we will discuss surgery. If it is working we will probably patch for a few more months and see if they continue strengthening. I really thought Connor would throw a fit over patching in the beginning, but this boy continues to amaze me!!! The very first time I put the patch on he laughed and played like nothing was up and has never tried to take the patch off. This is a picture of how his eye turns in. He was making a face at me so he does not normally hold his head at a angle to look at things he just happens to be doing that here.
First time patching and hes all smiles!!!
We are also watching Connors weight. He weighed 22 pounds when he came home. He gained up to 25 and has stayed at the 25/26 mark for a year and a half now. While he has grew alot taller he has not gained any weight. Since he eats ALOT this is a concern even with him being so active. We will go back to his pediatrician in 6 months to see if he has gained any. If he hasnt we will begin running test and trying to determine the cause. As much as I love him being my little baby It breaks my heart to see all his ribs and bones. He is drinking lots of ensure and we are hoping it will help.
Compared to where we were at this time last year Connor is doing wonderful healthwise. Since most of his sickness came in the fall/ winter time we are anxious to see what this year will be like. We are hopeful that it will be a much better year this year. Connor is a tough boy and he is so brave for all medical test and procedures. He has had more things thrown hes way than some do in a lifetime and yet he is always smiling and showing the world that we have so much to be joyful about.
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