Wednesday, February 16, 2011
One Week!
One week from today, I will be in California! Wow, I have a lot to do before that, but I am so excited to go. I hope everyone can get/stay well from now until we get back, at least.
Wednesday, February 9, 2011
CT Scan
Annalise had her CT Scan today. The neurologist was looking for calcification on the brain which would be a huge indicator of one of the types of Leukodystrophy. She was suppose to be at St. Joseph's hospital at 7:30 this morning. Since I was still running a fever last night, I knew I shouldn't take her, but we have already had to reschedule this once before. Luckily John was able to juggle his work schedule a little bit and take her in. I stayed home and got Jacob off to school, then loaded the others in the van and drove up to the hospital. The plan was that John would bring her out to me when she was finished and then he could go straight on to work. The kids and I got up to the hospital around 9:00 and they hadn't even taken her back yet. She was finished about 11:00. So we just hung out in the van in the parking lot for a couple of hours. It was really strange not being able to be in the hospital with Annalise while she was going through this. I'm glad it worked out that John was able to be with her.
Dr. Narayanan had wanted me to let him know when she had finished the CT Scan so that he could look at it. So, when we got home I went to call him, but realized that it was during their lunch break. So I fed the kids and put a very cranky Annalise down for a nap. I decided to lie down with Bryce for a little bit and ended up falling asleep. When I woke up, I was going to call the Dr, but decided to check my email first. Sure enough, he had already looked at the scan and emailed me with the results. He is the most awesome doctor! I love that he is so quick about these things! Never again will I let a doctor tell me it will take weeks to get results from these type of tests back, because now I know better. They can see them almost immediately if they want to!
Once I got the email, I forwarded it to John. Here is a copy of that email:
As you can see from the email, there was no calcification, the CT Scan was fine. Good news, but still leaves unanswered questions of course.
I wasn't going to add his email here, but I decided to because of something John just said as we were talking about it. He said that as he read it, he was cracking up because the doctor writes these emails to me like I am a colleague or another doctor or something . Using all these big words and asking my opinions on what to do next. I hadn't really even thought about it until he said that, but I guess that's true. It is kind of funny. The scary thing is that all these words and things he refers to are all starting to make sense to me. I actually know what he is talking about most of the time. Who knows, maybe when I grow up, I'll be a doctor after all! The part that has always intrigued me about his emails is that he always addresses me as Mrs. Clayton and then signs them with his first name. Here he is, the very intelligent, well known doctor treating me with such respect. I admire that. I must say, it is nice to have him on our side and to know that he will talk with us, and more importantly, listen to us, anytime we want/need to. I would love for him to be the one who figures out this mystery for us. I know he would love that also!
Dr. Narayanan had wanted me to let him know when she had finished the CT Scan so that he could look at it. So, when we got home I went to call him, but realized that it was during their lunch break. So I fed the kids and put a very cranky Annalise down for a nap. I decided to lie down with Bryce for a little bit and ended up falling asleep. When I woke up, I was going to call the Dr, but decided to check my email first. Sure enough, he had already looked at the scan and emailed me with the results. He is the most awesome doctor! I love that he is so quick about these things! Never again will I let a doctor tell me it will take weeks to get results from these type of tests back, because now I know better. They can see them almost immediately if they want to!
Once I got the email, I forwarded it to John. Here is a copy of that email:
Hi Mrs. Clayton:
Annalise’s CT looks OK – no calcifications.
I’ll meet you next Monday for her spinal tap – what time are you getting here?. We did not collect blood from her for the neurogenetics study, even though we did get all the paperwork. Shall I get two tubes of blood from her at the same time? We were also going to do gene testing on her for Aicardi-Goutieres syndrome.
I did ask Dr. Hyland about measuring creatine in CSF. They don’t do it.
He suggested that the best way is to measure creatine and guanidinoacetate in blood (for GAMT deficiency), and creatine in brain my MRspectroscopy for creatine transporter defect.
Vinodh
I wasn't going to add his email here, but I decided to because of something John just said as we were talking about it. He said that as he read it, he was cracking up because the doctor writes these emails to me like I am a colleague or another doctor or something . Using all these big words and asking my opinions on what to do next. I hadn't really even thought about it until he said that, but I guess that's true. It is kind of funny. The scary thing is that all these words and things he refers to are all starting to make sense to me. I actually know what he is talking about most of the time. Who knows, maybe when I grow up, I'll be a doctor after all! The part that has always intrigued me about his emails is that he always addresses me as Mrs. Clayton and then signs them with his first name. Here he is, the very intelligent, well known doctor treating me with such respect. I admire that. I must say, it is nice to have him on our side and to know that he will talk with us, and more importantly, listen to us, anytime we want/need to. I would love for him to be the one who figures out this mystery for us. I know he would love that also!
Tuesday, February 8, 2011
Feels Like Flu to Me!
I'm sitting here wrapped in 3 blankets, drinking hot chocolate, freezing and waiting for the Tylenol to kick in! My chest and eyes are on fire, and I hurt all over. Yep! Pretty sure William has shared his flu with his mom. So far, the other kids are doing pretty well. Annalise has a cough and is a little more cranky, but has not developed a fever or anything else yet. She is suppose to have a CT Scan done in the morning so hopefully she will be able to get that done. Spencer has a slight cough and Jacob and Spencer have complained of not feeling well, but no fevers or anything too severe. Hopefully that will be the worst of it for the kids. They did all have the shots, so hopefully that is helping/will continue to help them. I, on the other hand, never did get one for myself. Maybe next year I will remember this feeling and do better.
William has finally been fever free for 24 hours. He is still coughing, but with his asthma, I expect that to hang around for a while. Hopefully he will be going back to school tomorrow.
As all of this has been in our home we are constantly telling the kids not to touch their noses and mouths. Obviously Annalise still has a bit of learning to do.
From the nose,
straight to the mouth!
One more time. Nose...
mouth! Ahhh, the continual teaching process.
William has finally been fever free for 24 hours. He is still coughing, but with his asthma, I expect that to hang around for a while. Hopefully he will be going back to school tomorrow.
As all of this has been in our home we are constantly telling the kids not to touch their noses and mouths. Obviously Annalise still has a bit of learning to do.
From the nose,
straight to the mouth!
One more time. Nose...
mouth! Ahhh, the continual teaching process.
Saturday, February 5, 2011
Ragtime and Stride Piano Benefit Concert
It's official! The benefit concert for Bryce is happening on February 25 at 7 PM! Thanks to my parents, Bryce, Annalise, and I will be flying out to attend. I am so excited. It will be great to meet Will Perkins and thank him in person. I am still so grateful and amazed that this senior in High School who heard about Bryce has decided to help us out in this way. The world is filled with wonderful people!
Influenza A
Thursday afternoon I got a call from the school just a few minutes after school was over letting me know that William was not feeling well. They did not want him to ride the bus, so I figured he was sick to his stomach. I went over and picked him and the other boys up. William looked very pale and complained of a sore throat, nauseous stomach, and feeling achy all over. When we got home I took his temperature and he was running a fever of 101. We filled him with fluids, pain meds and he went to bed early (his decision). He then woke up multiple times during the night with pain and coughing. I debated Friday morning whether I should take him in or not and decided that I would wait and see if it would just run it's course on it's own. By 2 pm I knew I needed to take him in since his fever was up over 103 while on medicine and his cough had gone down into his chest. He has a lot of trouble with asthma so I didn't want to take a chance over the weekend.
Well, it was a good thing we decided to go in. Despite the fact that he had a flu shot earlier this season, they swabbed him for Influenza A and B which are both strains that are going around. His doctor said that they are beginning to see more children who are coming down with these flu viruses even though they had the flu shot. She told us the test would take about 15 minutes. Less then 5 minutes later she came back and said it had tested positive for influenza A almost immediately. Since it is so highly contagious, and we have two kids other than William who are at high risk for complications from the flu, she considered putting all the kids on Tamiflu. We decided to just have William, Bryce, and Annalise on it in the hopes that they at least would avoid it, or have a much milder case of it if they do get it. She also said that if Jacob or Spencer have any symptoms at all to call immediately and she would call in a script for them as well.
It had begun to go into William's bronchial tubes, so she is having us start him on albuterol (which we already had) and pulmicort in hopes that his asthma will not get worse. To make a really, really long story of trying to find a pharmacy which still had these medicines in stock short, we'll just say that 2 hours and $180 later we have the medicines that they need. I sure hope they help!
William had a rough night of coughing, puking, chills, fever, and pain. The poor kid is really sick. I could not believe how fast this flu came on. He is still running a fever and very miserable today. We will continue to push the fluids and hopefully soon he will be feeling better. I also really hope that no one else gets it!
Well, it was a good thing we decided to go in. Despite the fact that he had a flu shot earlier this season, they swabbed him for Influenza A and B which are both strains that are going around. His doctor said that they are beginning to see more children who are coming down with these flu viruses even though they had the flu shot. She told us the test would take about 15 minutes. Less then 5 minutes later she came back and said it had tested positive for influenza A almost immediately. Since it is so highly contagious, and we have two kids other than William who are at high risk for complications from the flu, she considered putting all the kids on Tamiflu. We decided to just have William, Bryce, and Annalise on it in the hopes that they at least would avoid it, or have a much milder case of it if they do get it. She also said that if Jacob or Spencer have any symptoms at all to call immediately and she would call in a script for them as well.
It had begun to go into William's bronchial tubes, so she is having us start him on albuterol (which we already had) and pulmicort in hopes that his asthma will not get worse. To make a really, really long story of trying to find a pharmacy which still had these medicines in stock short, we'll just say that 2 hours and $180 later we have the medicines that they need. I sure hope they help!
William had a rough night of coughing, puking, chills, fever, and pain. The poor kid is really sick. I could not believe how fast this flu came on. He is still running a fever and very miserable today. We will continue to push the fluids and hopefully soon he will be feeling better. I also really hope that no one else gets it!
Thursday, February 3, 2011
Goals and PT
I've never been one that has really liked setting goals. I think it all started back when I was a teenager and life seemed to be all about setting goals. It seems like if I plan to do something and work toward it, I get it done, but as soon as I "set a goal" to accomplish something, I fail. I know it is probably just some lame mental block in my head, but that is how it is for me. So, for many years now I have avoided setting goals. Well, today I have a whole new reason to dislike goals. Annalise began physical therapy today. I am very amazed and grateful that she has been able to get started so quickly, but these therapies can be brutal on the heart strings. The therapists had names for almost all of the little strange things I have begun to see Annalise doing. I was hoping that they were just things that I was imagining, but no such luck. They said that she is really beginning to compensate for the loss of strength that is occurring throughout her body. As part of her therapy, we had to come up with goals for her to work on. Of course the state wants us to set goals of progression. Well, unfortunately those are hard to set when you are working with something like Leukodystrophy. They don't progress, they regress...and it sucks!
There were two therapists here today working with Bryce and Annalise and working on coming up with realistic, attainable goals. The therapist we work with is awesome, but it was so hard to hear her and the other one who came along talk of the things that Annalise is not able to do and of the things she may never be able to do or will soon no longer be able to do. Many of these things she was doing just a few short months ago, some just a few days ago. This week has been a bad one for her. I know what they are saying is true and we have to be realistic when making plans for them, but it is so hard to wrap my head and heart around what is happening. I still just don't want to believe it. I finally got to a place where I could accept it with Bryce (not like it, but at least accept it) and have been a little more able to work with it from that point, but going through it all over again, is torture! Knowing what is coming and not being able to stop it just makes me crazy!
Annalise's legs have been very stiff the last couple of days. She is still walking, but has begun crawling a lot more or just standing and crying when she just can't seem to get her legs to do what they are suppose to. She really struggles with getting up from the floor now and sitting and rolling over are becoming much more difficult for her. She is losing strength in her trunk muscles. The spactisity in her legs has increased. She also seems to be in some pain. She has been waking up at night the past couple of nights and it is just so pitiful to see her try to roll over in her crib or get up on her own. It is becoming so difficult for her. She cries and I cry with her.
Now Bryce on the other hand is doing quite well. He is definitely on a peak right now, although he too has been in a bit more pain the last few days due to increased spactisity and tight muscle tone. His OT said that the cold weather may be making it worse. Hopefully we will be back to our 70 degree weather again soon! He does have a low dose of Valium that seems to help with the muscle spasms while he sleeps. He is working really well with Tess, his new PT. He has had a bit more strength in his neck and trunk muscles and moves all over the place when he is on the floor. He has almost rolled up onto his side a couple of times. If only he could get that arm out of the way, he would be rolling over. With help from me or the PT he is able to roll and he loves it.
There were two therapists here today working with Bryce and Annalise and working on coming up with realistic, attainable goals. The therapist we work with is awesome, but it was so hard to hear her and the other one who came along talk of the things that Annalise is not able to do and of the things she may never be able to do or will soon no longer be able to do. Many of these things she was doing just a few short months ago, some just a few days ago. This week has been a bad one for her. I know what they are saying is true and we have to be realistic when making plans for them, but it is so hard to wrap my head and heart around what is happening. I still just don't want to believe it. I finally got to a place where I could accept it with Bryce (not like it, but at least accept it) and have been a little more able to work with it from that point, but going through it all over again, is torture! Knowing what is coming and not being able to stop it just makes me crazy!
Annalise's legs have been very stiff the last couple of days. She is still walking, but has begun crawling a lot more or just standing and crying when she just can't seem to get her legs to do what they are suppose to. She really struggles with getting up from the floor now and sitting and rolling over are becoming much more difficult for her. She is losing strength in her trunk muscles. The spactisity in her legs has increased. She also seems to be in some pain. She has been waking up at night the past couple of nights and it is just so pitiful to see her try to roll over in her crib or get up on her own. It is becoming so difficult for her. She cries and I cry with her.
Now Bryce on the other hand is doing quite well. He is definitely on a peak right now, although he too has been in a bit more pain the last few days due to increased spactisity and tight muscle tone. His OT said that the cold weather may be making it worse. Hopefully we will be back to our 70 degree weather again soon! He does have a low dose of Valium that seems to help with the muscle spasms while he sleeps. He is working really well with Tess, his new PT. He has had a bit more strength in his neck and trunk muscles and moves all over the place when he is on the floor. He has almost rolled up onto his side a couple of times. If only he could get that arm out of the way, he would be rolling over. With help from me or the PT he is able to roll and he loves it.
Sunday, January 30, 2011
Good news and Other Stuff
I just found out some fantastic news...my sister in law is expecting baby number 2! Congratulations Ben and Shalyse. We may just have to make a trip back to North Carolina this summer to meet all the new babies!
Last Tuesday was the science fair at the boy's school. William had an experiment that he and some of the other kids in his class had done and Spencer had one that his class had done together. William was supposed to be by his experiment from 5 to 5:30. This was the same day as Bryce's birthday which made the evening a little crazy. Science fairs really aren't my thing, but my kids are, so we went to see their experiments. Luckily my Mom was in town so we left Bryce and Jacob (who had stayed home from school) with her while we went.
Spencer showing off his part of the experiment.
William explaining his experiment. It was the frozen seed experiment where they froze different types of seeds and then watched to see which ones would sprout.
Jacob had stayed home from school because he woke up with a very goopy, pinkish eye. Pink eye is going around the school, so I was guessing that was what he had. However, by mid morning his eye looked a little pink, and was itchy, but otherwise it looked fine so I didn't take him into the doctor. But by Wed. morning it was bad again and Annalise woke up with the same nasty looking eye. His went away again, but hers didn't so I called the doctor's office to see what they thought. They said it sounded like pink eye and I should bring them in. Well, since the appointment was right about the time that Bryce had therapy, my Mom took them into the doctor. It was weird because this was the first time ever that I have not taken my own kids into the doctor. It was nice that she was there to help. They did have pink eye...Jacob's was just a milder case so we got drops and began immediately putting them in their eyes. William and Spencer both ended up needing them as well. Pink eye is nasty stuff, but at least I would rather have that than lice...which is also going around the school! Yuck!
Wednesday night the Bishop came over to see us. I forgot that it was ward conference this weekend so I about freaked out when the Stake president walked through the door with the Bishop. My first thought was, "don't you dare give my husband a stake calling!" That's terrible I know, but hey, at least I'm honest! My next thought was, "man, I wish I had cleaned my house better today!" However, our wonderful Stake President made me feel much better when he reminded me that between he and the bishop, they have 17 kids and they have seen messier houses! It was actually very nice to talk with them and feel their spirit. It was good to have them in our home.
Friday we had Annalise's IFSP meeting to set some goals and plan for her therapy. These meetings are some of the worst! It is especially hard to make goals when you know she will most likely loose more skills as time goes on instead of the other way around. How do you make a goal around that? Anyway, the PT that had done Anna's evaluation was there and she did a good job of helping us to come up with some useful goals. Also, due to budget cuts, the therapy is now only partially paid for by the state. It looks like we will be covering about 25% of it. Hopefully our insurance will help with at least some of that. I have to look into all of that this week. Once I can get her into long term care, her therapies will be covered just like Bryce's are. Hopefully that will be a little easier this time around. We shall see.
Annalise will start PT within a week or so. Bryce's PT will be able to work with her as well which will be good for all of us. So, Thursday mornings will now be our Physical Therapy mornings.
She also has an appointment on Tuesday to be fitted for some supports for her ankles that will hopefully help her with her walk. It varies from day to day, but she has been having some tough walking days lately. Here is a picture of her latest bruise. She fell this time and hit the top of her eye on the treadmill a few days ago. It is looking better, but I had a lot of questions about it at church today, so I guess it is still pretty noticeable.
Here she is just being cute. Her hair is so thin. When it is wet like this, it doesn't look like she has much there, but she is getting a pretty good head full of hair.
This week has also been one filled with more blessings. Our mornings were made a little easier thanks to some frozen breakfast burritos that my friend Laurie supplied us with. They are delicious and provide a quick, yummy breakfast on those crazy mornings.
Also, John and I were able to go out on our date Friday night and we had Bryce's respite worker and two young women here to watch our kids. It was great to spend some quiet time together.
Then on Saturday was the Elder's quorum service project. Although it is a little hard on the pride to know that you have become the ward service project, it was amazing and very humbling to see so many ward members/friends come over to help us with yard work. They trimmed trees, picked fruit, dug up all the overgrown grass in the garden, moved things around, and burned what needed to be burned. The bishop's wife also brought us a huge casserole that will provide us with at least a couple of meals this week. I have a few pictures of all the work, but forgot to put them on here. I'll add them tomorrow. It was so kind of everybody to help out. I just wish I had gotten some hot dogs or something that everyone could have roasted over the fire. I need to think of these things before our yard is full of people next time! I'm not very good at this kind of thing.
Last Tuesday was the science fair at the boy's school. William had an experiment that he and some of the other kids in his class had done and Spencer had one that his class had done together. William was supposed to be by his experiment from 5 to 5:30. This was the same day as Bryce's birthday which made the evening a little crazy. Science fairs really aren't my thing, but my kids are, so we went to see their experiments. Luckily my Mom was in town so we left Bryce and Jacob (who had stayed home from school) with her while we went.
Spencer showing off his part of the experiment.
William explaining his experiment. It was the frozen seed experiment where they froze different types of seeds and then watched to see which ones would sprout.
Jacob had stayed home from school because he woke up with a very goopy, pinkish eye. Pink eye is going around the school, so I was guessing that was what he had. However, by mid morning his eye looked a little pink, and was itchy, but otherwise it looked fine so I didn't take him into the doctor. But by Wed. morning it was bad again and Annalise woke up with the same nasty looking eye. His went away again, but hers didn't so I called the doctor's office to see what they thought. They said it sounded like pink eye and I should bring them in. Well, since the appointment was right about the time that Bryce had therapy, my Mom took them into the doctor. It was weird because this was the first time ever that I have not taken my own kids into the doctor. It was nice that she was there to help. They did have pink eye...Jacob's was just a milder case so we got drops and began immediately putting them in their eyes. William and Spencer both ended up needing them as well. Pink eye is nasty stuff, but at least I would rather have that than lice...which is also going around the school! Yuck!
Wednesday night the Bishop came over to see us. I forgot that it was ward conference this weekend so I about freaked out when the Stake president walked through the door with the Bishop. My first thought was, "don't you dare give my husband a stake calling!" That's terrible I know, but hey, at least I'm honest! My next thought was, "man, I wish I had cleaned my house better today!" However, our wonderful Stake President made me feel much better when he reminded me that between he and the bishop, they have 17 kids and they have seen messier houses! It was actually very nice to talk with them and feel their spirit. It was good to have them in our home.
Friday we had Annalise's IFSP meeting to set some goals and plan for her therapy. These meetings are some of the worst! It is especially hard to make goals when you know she will most likely loose more skills as time goes on instead of the other way around. How do you make a goal around that? Anyway, the PT that had done Anna's evaluation was there and she did a good job of helping us to come up with some useful goals. Also, due to budget cuts, the therapy is now only partially paid for by the state. It looks like we will be covering about 25% of it. Hopefully our insurance will help with at least some of that. I have to look into all of that this week. Once I can get her into long term care, her therapies will be covered just like Bryce's are. Hopefully that will be a little easier this time around. We shall see.
Annalise will start PT within a week or so. Bryce's PT will be able to work with her as well which will be good for all of us. So, Thursday mornings will now be our Physical Therapy mornings.
She also has an appointment on Tuesday to be fitted for some supports for her ankles that will hopefully help her with her walk. It varies from day to day, but she has been having some tough walking days lately. Here is a picture of her latest bruise. She fell this time and hit the top of her eye on the treadmill a few days ago. It is looking better, but I had a lot of questions about it at church today, so I guess it is still pretty noticeable.
Here she is just being cute. Her hair is so thin. When it is wet like this, it doesn't look like she has much there, but she is getting a pretty good head full of hair.
This week has also been one filled with more blessings. Our mornings were made a little easier thanks to some frozen breakfast burritos that my friend Laurie supplied us with. They are delicious and provide a quick, yummy breakfast on those crazy mornings.
Also, John and I were able to go out on our date Friday night and we had Bryce's respite worker and two young women here to watch our kids. It was great to spend some quiet time together.
Then on Saturday was the Elder's quorum service project. Although it is a little hard on the pride to know that you have become the ward service project, it was amazing and very humbling to see so many ward members/friends come over to help us with yard work. They trimmed trees, picked fruit, dug up all the overgrown grass in the garden, moved things around, and burned what needed to be burned. The bishop's wife also brought us a huge casserole that will provide us with at least a couple of meals this week. I have a few pictures of all the work, but forgot to put them on here. I'll add them tomorrow. It was so kind of everybody to help out. I just wish I had gotten some hot dogs or something that everyone could have roasted over the fire. I need to think of these things before our yard is full of people next time! I'm not very good at this kind of thing.
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