tomorrow's appointment
Sep 20, 2006 8:24 AM
Well,
Today, the kids and I painted pictures of apple trees. It was fun, but messy!!! Nathan thought he would tasted the paint, Yuck!!He has tried glue before also. Anyway, it was fun...it took a really long time to clean up the kids and the kitchen!
It has been a while since I have posted anything. we have been so busy. I will eventually get to our story. I recently found some old journals we had written at different times when Joshua was a baby. Maybe I will post some of those soon.
I have enjoyed reading everyone's blogs and stories. I have kept some of you in my prayers. When you have a preemie you feel so alone at the time. It is even hard to relate to those you know who have full term children. It seems like no one really understands what you are going through. I remember when we were finally able to bring Joshua home from the hospital we required everyone who came in contact with him to wash their hands. We also carefully monitored who did come over. I remember one time in particular when My husband's parents were going to come visit from 4 1/2 hours away. One of them was sick. We had to tell them they couldn't come. At first they blamed everything on me. They thought I was just a paranoid new parent who was being way to careful. (Note: It wasn't just me, it was my husband too!!!) It was really hard, especially since we were still in our first years of marriage. They are a lot better now. Especially after one of my husband's sisters had a full term baby that almost died of group b-strep and had to stay in the hospital for quite a while on a respirator. They also started to notice that every time we came to visit we would end up in the emergency room for some medical issue. How could that be my fault? This last summer was the first time we didn't end up in the hospital when we went to visit!!
Now that Joshua is five, we don't have to be nearly as careful. My heart go out to all of you parents who have little ones that have to be in the house all fall, winter and spring to avoid RSV and the flu. It is so hard to be in so much and not see anyone, but it is so worth it!! we had to stay in for the first two RSV seasons. Joshua got the RSV shots both years. Cabin Fever!!!!! However, he stayed healthy and I think it helped his lungs recover a bit from the BPD.
Tomorrow we have another routine visit with Josh's neurosurgeon. We will leave by seven AM to drive to get the C.T. scans done and then the X-rays. I hope Joshua is cooperative. They are not sedating him this time. Then we will meet with his neurosurgeon to see how the pictures look and check his shunt. We have been a little worried about him lately. He is just starting to display some signs of shunt failer. It has happened before. He usually gets really tired, emotional and ornery. However, it is hard to tell if it is a shunt thing or just a five year old phase. If anything is ever wrong with him we worry that it is the shunt. I wish there was something new instead of a shunt, like a magical pill to drain the fluid. Ya right!!! We are so lucky that they have shunts to offer to kids that need them. Joshua's shunt is a newer model. It is magnetic. The doctor can reprogram it by holding an electromagnet up to it. It is kind of scary though, because it can get reprogrammed. About a year and a half ago he reprogrammed his own shunt. My father in law brought over some "Magnetix"(magnetic balls and rods you can build with). Josh loved them!! So, we went out and bought him some. We thought,"Awesome! Look at how he can hold those tiny pieces using the pincer grasp...what a great therapy toy!!!!" I am sure all you parents who have a child in therapy are always thinking of new ways to implement extra therapy for your children. Anyway, about a week later we noticed that Josh just wasn't himself. He was tired, slow, ornery and his physical abilities were staring to digress. Then I thought, " I wonder if those tiny magnets could reprogram his shunt?" The magnets are smaller than a marble. I searched the box and in tiny writing I found a warning that said, "keep away from pace makers and defibrillators." The warning was so small and not in a very noticeable spot. I reasoned that if they were strong enough to damage a pace maker, maybe it could affect a shunt. I called the neurosurgeon's office and asked if it was possible to reprogram a shunt with these toys. They didn't know. So we took him in. Then they got this electromagnetic wand out that they held up to his head . It has a little screen on it that tells what the shunt is programmed at (they can program it to allow different amounts of C.F. the flow through the shunt). Sure enough, he had reprogrammed his own shunt!!!! They quickly punched in the code and made the shunt reprogram back to what it was supposed to be. It was so sci-fi like. My son's whole life depends on this little machine that can be reprogrammed with a little wand!! Anyway, because the shunt is fairly new, the doctors don' know exactly what kind of magnet can reprogram the shunt or not. At toys stores we don't even let him walk down the "Magnetix" isle. (I know it is extreme, but what if?) Since then, I have read that some of the "leapfrog" fridge magnets can do the same thing. We have had to tell all his teachers and therapist not to use magnets(therapist often use them). I wish we just knew what can and what can't reprogram the shunt!. After they fixed his shunt with the wand, within 30 minutes he was back to his normal old self. Amazing.
Tomorrow, I hope all is well with the shunt. I will let everyone know how the appointment went. My daughter also has an appointment with her lung specialist. She was not a preemie as I have said before, but is showing signs of asthma. So now our two oldest are on the same nightly medication.
Well, I need to get the kiddos in bed, tomorrow is a big day.
Tiffany
Today, the kids and I painted pictures of apple trees. It was fun, but messy!!! Nathan thought he would tasted the paint, Yuck!!He has tried glue before also. Anyway, it was fun...it took a really long time to clean up the kids and the kitchen!
It has been a while since I have posted anything. we have been so busy. I will eventually get to our story. I recently found some old journals we had written at different times when Joshua was a baby. Maybe I will post some of those soon.
I have enjoyed reading everyone's blogs and stories. I have kept some of you in my prayers. When you have a preemie you feel so alone at the time. It is even hard to relate to those you know who have full term children. It seems like no one really understands what you are going through. I remember when we were finally able to bring Joshua home from the hospital we required everyone who came in contact with him to wash their hands. We also carefully monitored who did come over. I remember one time in particular when My husband's parents were going to come visit from 4 1/2 hours away. One of them was sick. We had to tell them they couldn't come. At first they blamed everything on me. They thought I was just a paranoid new parent who was being way to careful. (Note: It wasn't just me, it was my husband too!!!) It was really hard, especially since we were still in our first years of marriage. They are a lot better now. Especially after one of my husband's sisters had a full term baby that almost died of group b-strep and had to stay in the hospital for quite a while on a respirator. They also started to notice that every time we came to visit we would end up in the emergency room for some medical issue. How could that be my fault? This last summer was the first time we didn't end up in the hospital when we went to visit!!
Now that Joshua is five, we don't have to be nearly as careful. My heart go out to all of you parents who have little ones that have to be in the house all fall, winter and spring to avoid RSV and the flu. It is so hard to be in so much and not see anyone, but it is so worth it!! we had to stay in for the first two RSV seasons. Joshua got the RSV shots both years. Cabin Fever!!!!! However, he stayed healthy and I think it helped his lungs recover a bit from the BPD.
Tomorrow we have another routine visit with Josh's neurosurgeon. We will leave by seven AM to drive to get the C.T. scans done and then the X-rays. I hope Joshua is cooperative. They are not sedating him this time. Then we will meet with his neurosurgeon to see how the pictures look and check his shunt. We have been a little worried about him lately. He is just starting to display some signs of shunt failer. It has happened before. He usually gets really tired, emotional and ornery. However, it is hard to tell if it is a shunt thing or just a five year old phase. If anything is ever wrong with him we worry that it is the shunt. I wish there was something new instead of a shunt, like a magical pill to drain the fluid. Ya right!!! We are so lucky that they have shunts to offer to kids that need them. Joshua's shunt is a newer model. It is magnetic. The doctor can reprogram it by holding an electromagnet up to it. It is kind of scary though, because it can get reprogrammed. About a year and a half ago he reprogrammed his own shunt. My father in law brought over some "Magnetix"(magnetic balls and rods you can build with). Josh loved them!! So, we went out and bought him some. We thought,"Awesome! Look at how he can hold those tiny pieces using the pincer grasp...what a great therapy toy!!!!" I am sure all you parents who have a child in therapy are always thinking of new ways to implement extra therapy for your children. Anyway, about a week later we noticed that Josh just wasn't himself. He was tired, slow, ornery and his physical abilities were staring to digress. Then I thought, " I wonder if those tiny magnets could reprogram his shunt?" The magnets are smaller than a marble. I searched the box and in tiny writing I found a warning that said, "keep away from pace makers and defibrillators." The warning was so small and not in a very noticeable spot. I reasoned that if they were strong enough to damage a pace maker, maybe it could affect a shunt. I called the neurosurgeon's office and asked if it was possible to reprogram a shunt with these toys. They didn't know. So we took him in. Then they got this electromagnetic wand out that they held up to his head . It has a little screen on it that tells what the shunt is programmed at (they can program it to allow different amounts of C.F. the flow through the shunt). Sure enough, he had reprogrammed his own shunt!!!! They quickly punched in the code and made the shunt reprogram back to what it was supposed to be. It was so sci-fi like. My son's whole life depends on this little machine that can be reprogrammed with a little wand!! Anyway, because the shunt is fairly new, the doctors don' know exactly what kind of magnet can reprogram the shunt or not. At toys stores we don't even let him walk down the "Magnetix" isle. (I know it is extreme, but what if?) Since then, I have read that some of the "leapfrog" fridge magnets can do the same thing. We have had to tell all his teachers and therapist not to use magnets(therapist often use them). I wish we just knew what can and what can't reprogram the shunt!. After they fixed his shunt with the wand, within 30 minutes he was back to his normal old self. Amazing.
Tomorrow, I hope all is well with the shunt. I will let everyone know how the appointment went. My daughter also has an appointment with her lung specialist. She was not a preemie as I have said before, but is showing signs of asthma. So now our two oldest are on the same nightly medication.
Well, I need to get the kiddos in bed, tomorrow is a big day.
Tiffany
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