Last night, we went to Chris' sisters' house. We had dinner with our sisters, Joey and Rae, Chris' mom and dad, and our crew. Joey and Rae made some absolutely delicious burgers and the fixings. It was nice to just enjoy the family for the night. Rae got the boys some paratroopers, and I think that they just about wore her out between throwing them and getting them tangled.
We got the call yesterday about Aidan's head CT from Wednesday. It didn't show anything that we didn't already know about, so that was great!
Chris had to work this morning, but is on his way home as I type this. Once he gets here, we've got a fun evening planned. We're going to dye easter eggs and decorate baskets. Aidan missed all of the easter fun at school this week, so we're going to try to make up for it today and tomorrow. Tomorrow, we're going to have an easter egg hunt here at home. I'll try to post pictures later.
I might not get back on here before Monday, so Happy Easter to everyone!
Saturday, April 3, 2010
Thursday, April 1, 2010
Phone Calls, Paperwork, and Cleaning. . . Oh, My!
Well, today was rather uneventful, but I did get a lot accomplished. This morning started with a quick lesson on manners between Keegan and Aidan.
Aidan: I am so smart in school.
Keegan: You aren't supposed to say you're smart. That just makes you sound dumb.
Aidan: But I am smart. . . in school.
Keegan: But you can't say that. Someone else has to tell you.
Aidan: Oh.
Keegan: Try this Aidan. Pretend I'm somebody else. You are so smart in school.
Aidan: That's what I said.
Keegan: You're supposed to just say thank you.
Aidan: Oh.
I was really enjoying the laughs this morning on the way to take them to school. :o)
When I got back home, it was time for the usual calls amongst doctors, suppliers, the pharmacy, etc. The most significant of which was a call from Aidan's neurologist. The CT scan did not reveal anything in his head that we weren't already aware of. So, that is great news. We were worried with the increased headaches, but all is well. Sunshine and allergies are just a big trigger for him.
On an off-topic note, please keep my friend Christie and her husband Kyle in your thoughts and prayers. They have just found out that their unborn son has some problems with his heart and I'm sure they would appreciate more positive thoughts and prayers coming their way.
Until tomorrow. . .
Aidan: I am so smart in school.
Keegan: You aren't supposed to say you're smart. That just makes you sound dumb.
Aidan: But I am smart. . . in school.
Keegan: But you can't say that. Someone else has to tell you.
Aidan: Oh.
Keegan: Try this Aidan. Pretend I'm somebody else. You are so smart in school.
Aidan: That's what I said.
Keegan: You're supposed to just say thank you.
Aidan: Oh.
I was really enjoying the laughs this morning on the way to take them to school. :o)
When I got back home, it was time for the usual calls amongst doctors, suppliers, the pharmacy, etc. The most significant of which was a call from Aidan's neurologist. The CT scan did not reveal anything in his head that we weren't already aware of. So, that is great news. We were worried with the increased headaches, but all is well. Sunshine and allergies are just a big trigger for him.
On an off-topic note, please keep my friend Christie and her husband Kyle in your thoughts and prayers. They have just found out that their unborn son has some problems with his heart and I'm sure they would appreciate more positive thoughts and prayers coming their way.
Until tomorrow. . .
Wednesday, March 31, 2010
The Littlest Heroes Project
Not very long ago, we were referred to the Littlest Heroes Project (www.littlestheroesproject.org).
"The Littlest Heroes Project is a non-profit based organization founded in January 2008 by Felicia Reinhard, made up of professional photographers nationwide that provide free photo sessions to our nations Littlest Heroes. Through the power of photography we are giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses. We are here to let them know that they are heroes to many, and to share their inspirational stories and photos with the world."
Aidan qualified for the project, and we were matched up with Rhonda Gray, a local photographer (www.rhondagrayphotography.com). We scheduled Aidan's session for this past Saturday. Rhonda spent two hours taking pictures of not only Aidan, but our entire family. I wanted to share a few pictures from our fun-filled day!
Now, due to space restrictions, I am posting what were supposed to be my email sneak preview pictures. As such, I am not doing Rhonda's photography justice. She is an amazing photographer with a gift that is beyond words. I hope to post a few more in the coming days, but until then, I hope that this will suffice.
Rhonda, thank you for the precious memories and such beautiful pictures!
"The Littlest Heroes Project is a non-profit based organization founded in January 2008 by Felicia Reinhard, made up of professional photographers nationwide that provide free photo sessions to our nations Littlest Heroes. Through the power of photography we are giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses. We are here to let them know that they are heroes to many, and to share their inspirational stories and photos with the world."
Aidan qualified for the project, and we were matched up with Rhonda Gray, a local photographer (www.rhondagrayphotography.com). We scheduled Aidan's session for this past Saturday. Rhonda spent two hours taking pictures of not only Aidan, but our entire family. I wanted to share a few pictures from our fun-filled day!
Now, due to space restrictions, I am posting what were supposed to be my email sneak preview pictures. As such, I am not doing Rhonda's photography justice. She is an amazing photographer with a gift that is beyond words. I hope to post a few more in the coming days, but until then, I hope that this will suffice.
Rhonda, thank you for the precious memories and such beautiful pictures!
Whirlwind Week
This week has finally slowed down enough for me to write a quick update. First of all, Aidan had a pulmonology appointment on Monday. Dr. T is a wonderful doctor, and the appointment went rather well. We also meet with the dietician every time that we go to the pulmonologist. Since Aidan's illness is so similar to that of a Cystic Fibrosis patient, we have to work really hard to get enough calories into him for him to actually grow. Unfortunately, our dietician decided to transfer to the NICU, so this appointment included getting acquainted with our new dietician, Katie. Aidan has lost about 1/2 a pound since our last appointment, but that may be due to the recent pneumonias and general wintertime sickness. However, because of his stools, they feel that his pancreatic enzymes may not be working as well as they could be.
A little anatomy & physiology lesson: The stomach naturally contains acid in order to digest food. The enzyme capsules that Aidan takes are designed to withstand this acidity, and do not begin to dissolve until they reach the first part of the intestines. However, if there is too much acid in the stomach, it begins spilling over into the first part of the intestines. Since the enzymes are designed to withstand the acidity, they may not release on time in this case. Anatomy lesson over.
So, Dr. T and Katie have decided to put Aidan on Zantac, which is a common acid reducer. This is not to treat GERD, as his Nissen has been recently checked and found to be intact, but instead to lower the acid content and hopefully reduce the acidity in the intestines.
They submitted a prescription to get "The Vest" for Aidan. This is a machine that will do Aidan's chest physiotherapy. Right now, we have to lay Aidan in awkward positions and beat on his back and chest 3 times a day for half an hour. This is uncomfortable for him, tiring for us, and it keeps him from doing anything else during that time period. "The Vest" will allow him to do other things during his physiotherapy while sitting up instead of laying down. It is also supposed to be much more effective, promote independence, and increase patient compliance. However, I am told that "The Vest" costs about $16,000 per year of treatment. We will be doing a lot of research and consideration over the next few days, but hopefully we will know something soon.
Dr. T also ordered a CT of Aidan's chest, but I will get to that a little bit later.
Yesterday (Tuesday), we had a couple of appointments as well. In the morning, Keegan went to the dentist. This was just for prophylactic cleaning, but they also checked on his front teeth again because of a bike accident in the not so distant past. The cleaning went well, and Keegan again has no cavities! The chipped front teeth appear to be okay on X-rays, so hopefully we won't need another dentist appointment for him until the beginning of September.
After the dentist appointment, we headed to Aidan's immunology appointment. There are still a lot of unresolved immunology issues, and I am not feeling particularly comfortable with Dr. L. Instead of starting allergy shots this month as we discussed in October, she decided to increase Aidan to an adult dosage of Advair. I am not very comfortable with the Advair to begin with, but we let him take it because it has helped with his respiratory problems a lot. However, I am really not comfortable with the increased dosage. I believe that we are going to wait to get a second opinion on this when we travel to Cincinnati Children's in April. Otherwise, it was a long day, but went pretty well considering.
This morning, Aidan had a CT of his head and a CT of his chest. I have heard back on the chest CT, but not on the head CT. The chest CT actually looked pretty good, according to Dr. T. Aidan does have some scarring in his right middle lobe, and a 'nodule' in his left lower lobe that Dr. T feels is probably a granuloma. I don't know much about all of this, but it appears that Aidan's respiratory treatments will not change at this point. We return to Dr. T in June, and will decide how to proceed at that point.
As for the head CT, I have a call in to the neurologist's office, and hopefully they will get back with me soon. I'll be sure to update when I hear something.
Overall, it's been a very busy week, and I'll be glad for the one day of school that tomorrow brings. Then, it's on to Good Friday and Easter weekend. We are enjoying the beautiful weather. I don't know why, but a little sunshine makes a world of difference.
A little anatomy & physiology lesson: The stomach naturally contains acid in order to digest food. The enzyme capsules that Aidan takes are designed to withstand this acidity, and do not begin to dissolve until they reach the first part of the intestines. However, if there is too much acid in the stomach, it begins spilling over into the first part of the intestines. Since the enzymes are designed to withstand the acidity, they may not release on time in this case. Anatomy lesson over.
So, Dr. T and Katie have decided to put Aidan on Zantac, which is a common acid reducer. This is not to treat GERD, as his Nissen has been recently checked and found to be intact, but instead to lower the acid content and hopefully reduce the acidity in the intestines.
They submitted a prescription to get "The Vest" for Aidan. This is a machine that will do Aidan's chest physiotherapy. Right now, we have to lay Aidan in awkward positions and beat on his back and chest 3 times a day for half an hour. This is uncomfortable for him, tiring for us, and it keeps him from doing anything else during that time period. "The Vest" will allow him to do other things during his physiotherapy while sitting up instead of laying down. It is also supposed to be much more effective, promote independence, and increase patient compliance. However, I am told that "The Vest" costs about $16,000 per year of treatment. We will be doing a lot of research and consideration over the next few days, but hopefully we will know something soon.
Dr. T also ordered a CT of Aidan's chest, but I will get to that a little bit later.
Yesterday (Tuesday), we had a couple of appointments as well. In the morning, Keegan went to the dentist. This was just for prophylactic cleaning, but they also checked on his front teeth again because of a bike accident in the not so distant past. The cleaning went well, and Keegan again has no cavities! The chipped front teeth appear to be okay on X-rays, so hopefully we won't need another dentist appointment for him until the beginning of September.
After the dentist appointment, we headed to Aidan's immunology appointment. There are still a lot of unresolved immunology issues, and I am not feeling particularly comfortable with Dr. L. Instead of starting allergy shots this month as we discussed in October, she decided to increase Aidan to an adult dosage of Advair. I am not very comfortable with the Advair to begin with, but we let him take it because it has helped with his respiratory problems a lot. However, I am really not comfortable with the increased dosage. I believe that we are going to wait to get a second opinion on this when we travel to Cincinnati Children's in April. Otherwise, it was a long day, but went pretty well considering.
This morning, Aidan had a CT of his head and a CT of his chest. I have heard back on the chest CT, but not on the head CT. The chest CT actually looked pretty good, according to Dr. T. Aidan does have some scarring in his right middle lobe, and a 'nodule' in his left lower lobe that Dr. T feels is probably a granuloma. I don't know much about all of this, but it appears that Aidan's respiratory treatments will not change at this point. We return to Dr. T in June, and will decide how to proceed at that point.
As for the head CT, I have a call in to the neurologist's office, and hopefully they will get back with me soon. I'll be sure to update when I hear something.
Overall, it's been a very busy week, and I'll be glad for the one day of school that tomorrow brings. Then, it's on to Good Friday and Easter weekend. We are enjoying the beautiful weather. I don't know why, but a little sunshine makes a world of difference.
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