Saturday, November 24, 2007
Some art to share
Yesterday Jackson and I busted out the watercolors! We made 2 paintings. One is for Grandpa Chuck who is recovering from surgery and one is for Great-Grandma Kate who is in the nursing unit at her senior home because of troubles with her legs. Jackson needs help holding onto the paintbrush, but other than that does the painting himself. I think they are beautiful paintings!
Friday, November 9, 2007
Physiatrist appointment and really cute video
Jackson had an appointment with his physiatrist a few weeks ago, I just haven't had time to update yet. We saw her at her main office instead of the hospital we normally see her at because I have major issues with their billing and refuse to go there anymore. Unfortunately, the other office is a much longer drive but whatcha gonna do?
It was a long (as usual) appointment but a good one (as usual).
We talked about his Shriner's appointment and she was kind of shocked that he sat for his spine x-ray also. She had the same thoughts as me about the goofy position contributing to the appearance of scoliosis on the x-ray and thought it would have been better to lie him down. But she said the Dr. he saw is world renown so he should know. Then she looked him over front, sides, and back and even sat him up to look too. And in some positions he looked totally straight but in others she said she could definitely see the curve.
We talked a little bit about his seizures.
We talked about the denials from insurance. I don't think I have blogged about this yet, but lately insurance has been giving us a lot of denials. Even though his dynavox was preapproved, now they are saying they will not pay for it...so they are saying I owe the provider close to $5000. I am not that surprised by it though considering earlier in the year they actually paid for stuff and then asked for their money back! Also, they were denying a new pair of AFOs for Jackson but they did change their minds about that one. She is going to write another letter of medical necessity for the appeal for the dynavox.
We spoke about how the drooling clinic at CHW recommended botox and I asked her if she could do it since we couldn't get it worked out for when we were there. She said yes, she would do it but would like for him to try one more med first. So she gave him an rx for ditropan. She said some of her patients say that works better than robinul (which he takes now).
She is going to write a letter for him to get a vaccine exemption. His vaccines are up to date now but when he turns 5 he will be due for more. Illinois does not have a philosophical exemption; the only exemptions we have are religious and medical. I am not sure what hoops we will have to jump through to get the exemption, but the letter will help.
Even though we think his tube site has been looking a little red and crusty lately, she thought it was so beautiful that she had to call the resident and med student over to check it out!
And I asked her if she knew of any medical insurance advocate services that we could use once we get J's vaccine settlement. It is causing me serious stress dealing with all these denials from insurance, and hopefully an advocate would be able to make the process a little easier.
Saving the best for last! Go check out Jackson's new video in his photo gallery. He has been singing to his music more and more lately. And he just loves to sing to this particular song most of all. I was so happy to finally catch it on video...I had a mouth full of crackers so I had to stop chewing to get it on video so you would not hear the crunching. LOL!
It was a long (as usual) appointment but a good one (as usual).
We talked about his Shriner's appointment and she was kind of shocked that he sat for his spine x-ray also. She had the same thoughts as me about the goofy position contributing to the appearance of scoliosis on the x-ray and thought it would have been better to lie him down. But she said the Dr. he saw is world renown so he should know. Then she looked him over front, sides, and back and even sat him up to look too. And in some positions he looked totally straight but in others she said she could definitely see the curve.
We talked a little bit about his seizures.
We talked about the denials from insurance. I don't think I have blogged about this yet, but lately insurance has been giving us a lot of denials. Even though his dynavox was preapproved, now they are saying they will not pay for it...so they are saying I owe the provider close to $5000. I am not that surprised by it though considering earlier in the year they actually paid for stuff and then asked for their money back! Also, they were denying a new pair of AFOs for Jackson but they did change their minds about that one. She is going to write another letter of medical necessity for the appeal for the dynavox.
We spoke about how the drooling clinic at CHW recommended botox and I asked her if she could do it since we couldn't get it worked out for when we were there. She said yes, she would do it but would like for him to try one more med first. So she gave him an rx for ditropan. She said some of her patients say that works better than robinul (which he takes now).
She is going to write a letter for him to get a vaccine exemption. His vaccines are up to date now but when he turns 5 he will be due for more. Illinois does not have a philosophical exemption; the only exemptions we have are religious and medical. I am not sure what hoops we will have to jump through to get the exemption, but the letter will help.
Even though we think his tube site has been looking a little red and crusty lately, she thought it was so beautiful that she had to call the resident and med student over to check it out!
And I asked her if she knew of any medical insurance advocate services that we could use once we get J's vaccine settlement. It is causing me serious stress dealing with all these denials from insurance, and hopefully an advocate would be able to make the process a little easier.
Saving the best for last! Go check out Jackson's new video in his photo gallery. He has been singing to his music more and more lately. And he just loves to sing to this particular song most of all. I was so happy to finally catch it on video...I had a mouth full of crackers so I had to stop chewing to get it on video so you would not hear the crunching. LOL!
Friday, November 2, 2007
New seizure med
As it stands now, the neurologist is starting Jackson on a medicine called lamictal. The main side effect from this med is a really bad (and sometimes life-threatening!) rash. To avoid this, we are going to taper up very slowly, over 16 weeks. With the slow tapering up there is less than a 1% chance of getting the rash, but it is still something we need to be watching for.
He had his first dose last night, and he slept really badly which is common until he gets used to the dose and it will probably happen each time we increase.
The funny thing is that both the neurologist on the floor last week and the nurse I spoke with this week say it is "a really good medicine", but the way they say it just makes me chuckle. They have such genuine affection in their voices when they talk about it. I have not seen that with any other medication before, and Jackson has been on quite a few.
He had his first dose last night, and he slept really badly which is common until he gets used to the dose and it will probably happen each time we increase.
The funny thing is that both the neurologist on the floor last week and the nurse I spoke with this week say it is "a really good medicine", but the way they say it just makes me chuckle. They have such genuine affection in their voices when they talk about it. I have not seen that with any other medication before, and Jackson has been on quite a few.
Thursday, November 1, 2007
Halloween pics and more...
Jackson wanted to be a dinosaur for halloween this year. It was definitely not a good wheelchair-sitting costume with the spikes on the back and the tail, but it was what he wanted to be. He wore the costume to therapy on Tuesday and to school on Wednesday, but he decided he would rather stay home than go out to trick-or-treat. They had lots of fun halloween stuff to do at school anyway, and he doesn't eat candy so it was probably a good choice.
When we were at therapy, a kid came up to Jackson and was really checking out his costume. Then he says "Wow! He looks like a real dinosaur!" It was really cute!
Here are a couple pics from the hospital when he was doing his VEEG.
A few of my boy and his doggie...
When we were at therapy, a kid came up to Jackson and was really checking out his costume. Then he says "Wow! He looks like a real dinosaur!" It was really cute!
Here are a couple pics from the hospital when he was doing his VEEG.
A few of my boy and his doggie...
Tuesday, October 30, 2007
Friday, October 26, 2007
We are still here
at the hospital doing the VEEG. Here is the story...
When we first got here on Wed. the nurse practitioner told us that from the videos I took at home as well as my descriptions and their knowledge of low tone CP kids, they felt that there was a chance that the retching episodes were actually seizures. If it turned out that they were seizures it would also explain why no meds are helping and they might be better controlled with different seizure meds. I spoke with the doctor later that day and she said that it appeared that he was having seizures, but she did not have much info since we had only been there for a few hours.
Yesterday, I spoke again with the doctor. Bad news. He is definitely having seizure activity, however there is no correlation with the retching episodes. He had a lot (over 40) of electrographic seizures that could not be seen clinically...meaning they can been seen on the EEG, but there are no signs when you look at him that he is having a seizure. They were very short episodes though, most around 5 seconds or less.
The plan was to keep him here for another night just to be sure they were seeing all of his typical behavior and then decide if they were going to do anything to his meds or not. The doctors meet at 11 and then start rounds so we may not know anything for a couple hours yet.
Hopefully we will be discharged sooner than later since I am dreaming of beating the traffic going home. Doesn't look like that is going to happen, it will likely be a long trip home both because of the traffic and because the weather is not all that good today.
On the positive side...we have out own room and it is a decent size. It has a bathroom with a shower. And wireless internet!!!!! Definitely nicer than Children's Memorial in that respect. However, the cafeteria is not as good as CMH by far (which surprises me since I never though theirs was good at all!) and I know where the free coffee is over there. I would do some exploring here, but you can't leave the kids alone in the EMU so if I go anywhere I have to call the nurse to stay with him.
When we first got here on Wed. the nurse practitioner told us that from the videos I took at home as well as my descriptions and their knowledge of low tone CP kids, they felt that there was a chance that the retching episodes were actually seizures. If it turned out that they were seizures it would also explain why no meds are helping and they might be better controlled with different seizure meds. I spoke with the doctor later that day and she said that it appeared that he was having seizures, but she did not have much info since we had only been there for a few hours.
Yesterday, I spoke again with the doctor. Bad news. He is definitely having seizure activity, however there is no correlation with the retching episodes. He had a lot (over 40) of electrographic seizures that could not be seen clinically...meaning they can been seen on the EEG, but there are no signs when you look at him that he is having a seizure. They were very short episodes though, most around 5 seconds or less.
The plan was to keep him here for another night just to be sure they were seeing all of his typical behavior and then decide if they were going to do anything to his meds or not. The doctors meet at 11 and then start rounds so we may not know anything for a couple hours yet.
Hopefully we will be discharged sooner than later since I am dreaming of beating the traffic going home. Doesn't look like that is going to happen, it will likely be a long trip home both because of the traffic and because the weather is not all that good today.
On the positive side...we have out own room and it is a decent size. It has a bathroom with a shower. And wireless internet!!!!! Definitely nicer than Children's Memorial in that respect. However, the cafeteria is not as good as CMH by far (which surprises me since I never though theirs was good at all!) and I know where the free coffee is over there. I would do some exploring here, but you can't leave the kids alone in the EMU so if I go anywhere I have to call the nurse to stay with him.
Monday, October 22, 2007
Coming up this week
This is the week Jackson is having his Video EEG (long term seizure monitoring). Jackson will be inpatient for at least 24 hours but possibly as long as 48 hours. We will be in Milwaukee for this so sadly Daddy can't come visit us while we we be there. If you want to check out where we will be staying click here, click on Special Areas of Interest Tour, and then click on the first little picture at the bottom of the pop-up screen. It will give you a 3-D tour of the unit, you can click on different hotspots in the tour for info.
We are also hoping to arrange to have Jackson's botox (for saliva control) done while we are there. Unfortunately, the office of the doctor who is supposed to do this does not seem very organized. I have been calling there trying to get this set up for a couple weeks now and have not heard yet if they can do it. Annoying! Today I was told the nurse who is supposed to be doing the call backs for the doctor was A) Very backed up with calls so she was already behind and B) Had a death in her family so she has not been in the office as much as usual. The administrative assistant I spoke with today said she would put the message in as "urgent". We'll see.
We are also hoping to arrange to have Jackson's botox (for saliva control) done while we are there. Unfortunately, the office of the doctor who is supposed to do this does not seem very organized. I have been calling there trying to get this set up for a couple weeks now and have not heard yet if they can do it. Annoying! Today I was told the nurse who is supposed to be doing the call backs for the doctor was A) Very backed up with calls so she was already behind and B) Had a death in her family so she has not been in the office as much as usual. The administrative assistant I spoke with today said she would put the message in as "urgent". We'll see.
Sunday, October 7, 2007
Thursday, October 4, 2007
Jackson's appointment at Shriner's
On Monday, Jackson had his long awaited orthopedic appointment at Shriner's Hospital. We wanted to go primarily for them to check out his hips and shoulders. It was a good appointment. He was seen by a team of people: social worker who functions as a care coordinator, nurse, PT, OT, and resident and attending orthopedic surgeons.
He got x-rays of his hips and his spine. He had to sit upright on a bench to get the spine x-ray, which was very difficult for him and for me (as I had to support him there).
As I suspected, there were problems with his hips. He has hip dysplasia, as shown on the x-rays. We knew there were issues with his hips because of his increasing "froggy" positions of his legs. However, I was told by the doctor that it is actually good for his hips to be in that froggy position, that it actually keeps his hip where they are supposed to be. At this time they are not going to do anything for his hips aside from keeping an eye on them. This is very common in children with CP.
A surprise to me though, was that he has scoliosis. They said it was a curve of 20%, his x-ray looked quite curvy to me. This is also a very common condition in children with CP. I guess it should not have been that much of a surprise because he always looks to the left and has different muscle tone on the left and right sides of his body. This is again something they are going to watch, but not treat at this time.
The recommendation is for him to get x-rays annually until the age of 9 or 10, and then every 6 months. He goes back in 6 months for another appointment.
The very cool thing is that Shriner's is only about a 10 minute drive from our house. If you know Chicago, you know that you really can't get anywhere in 10 minutes. They also provide totally free care.
He got x-rays of his hips and his spine. He had to sit upright on a bench to get the spine x-ray, which was very difficult for him and for me (as I had to support him there).
As I suspected, there were problems with his hips. He has hip dysplasia, as shown on the x-rays. We knew there were issues with his hips because of his increasing "froggy" positions of his legs. However, I was told by the doctor that it is actually good for his hips to be in that froggy position, that it actually keeps his hip where they are supposed to be. At this time they are not going to do anything for his hips aside from keeping an eye on them. This is very common in children with CP.
A surprise to me though, was that he has scoliosis. They said it was a curve of 20%, his x-ray looked quite curvy to me. This is also a very common condition in children with CP. I guess it should not have been that much of a surprise because he always looks to the left and has different muscle tone on the left and right sides of his body. This is again something they are going to watch, but not treat at this time.
The recommendation is for him to get x-rays annually until the age of 9 or 10, and then every 6 months. He goes back in 6 months for another appointment.
The very cool thing is that Shriner's is only about a 10 minute drive from our house. If you know Chicago, you know that you really can't get anywhere in 10 minutes. They also provide totally free care.
Saturday, September 22, 2007
Little bus snafu
Jackson's bus nurse called in sick on Friday. I had a doctor's appointment and could not take him to school. I debated if I should just take him with me to the doctor's and have him miss school, but decided to send him on the bus anyway. The class nurse called while he was at school and told Lee that since we now have doctor's orders that he needs a nurse on the bus, he is not allowed to ride the bus without one. They will not provide a substitute nurse unless they have advanced notice that she will be out.
The thing is, he does not actually need a nurse. He just needs someone who isn't a flipping moron to watch him. But it's kind of hard to get a doctor to write an order for that!
They did allow him to ride the bus home because I could not get there in time and I had the van with me.
I guess I will get the doctor to rewrite the orders to say that he can ride without a nurse in a pinch but not on a regular basis.
The thing is, he does not actually need a nurse. He just needs someone who isn't a flipping moron to watch him. But it's kind of hard to get a doctor to write an order for that!
They did allow him to ride the bus home because I could not get there in time and I had the van with me.
I guess I will get the doctor to rewrite the orders to say that he can ride without a nurse in a pinch but not on a regular basis.
Thursday, September 20, 2007
I suppose I should update...
Time sure flies, huh?
bgh bggggggggggggggggggggggggggbbgggggggggggg n <----------message from Jackson
Jackson is liking school again this year. The school is taking their annual field trip to the zoo next week and Lee is going to come with us so that should be fun! Things are working out well with the nurse on the bus. And they actually managed to get an air conditioned school bus for him just in time for our big heat wave.
I am a little bit frustrated with his "talker" as we are calling it now. The school district has a goofy rule that kids are not allowed to have anything mounted to their wheelchair on the bus because they say it is a safety hazard. They originally wanted me to take the mount off and send it in some sort of bag separately on the bus. Well he already takes a large backpack full of orthotics, his feeding pump bag, plus now his talker in the carrying case. The mount is very large and heavy, and sending it in daily is not an option. Because we have to take it off and put it back on everyday, he is not really getting the practice on it that he needs to be able to use it proficiently.
Anyway, his new speech therapist (who I like quite well so far) called the district's assisitve tech department and we met with them on Wednesday so that they can get him a communicator mount and headswitch mount for school. Hopefully they can do that soon. Plus the lady said she would find out who I can complain to about the stupid bus rule.
Medically Jackson is about the same. We started and stopped yet another med from the pain clinic (celexa). We stopped it because Jackson seemed to be agitated on it, he'd been having some sleeping issues and also grinding his teeth ALL THE TIME. We may be starting soon on some high dose zofran to see if that makes a difference, although we hear that insurance may give us some flack about covering it since it is so expensive.
The new neurologist has raised his keppra because when we had labs drawn his levels were lower than they like to see. We are supposed to go for more labs to make sure his levels are right on this dose, but it has to be drawn 1st thing in the AM before medicine and that would mean he would be missing school. We might be able to go on Saturday though, I will have to call and see.
Also, he is going to have a new video EEG done on Oct. 24th. He will be inpatient for at least 1 day, but possibly 2 for this. I have been noticing very few seizures recently, I think maybe only one in the last few weeks. It is nice to have a neuro that actually does something (aside from frustrating me, that is!), but it's a shame that we have to go so far.
And finally, we had his saliva management clinic appointment this week too. They feel he has done all the meds so then our options are either botox or surgery. I think we are going to go ahead and try the botox, just because it may help his GI issues some. Definitely worth a try for sure.
Ok, saving the best news for last here. Are you ready? Hope you are sitting down!
The vaccine case is coming to an end! Lee and I decided we were tired of fighting about what amounted to (in the large picture) a very little bit of money so we quit. Now there has to be a hearing so the Special Master can approve everything and about 30-40 days later we will have money. Woohoooooooooo!!! I can hardly believe it!
bgh bggggggggggggggggggggggggggbbgggggggggggg n <----------message from Jackson
Jackson is liking school again this year. The school is taking their annual field trip to the zoo next week and Lee is going to come with us so that should be fun! Things are working out well with the nurse on the bus. And they actually managed to get an air conditioned school bus for him just in time for our big heat wave.
I am a little bit frustrated with his "talker" as we are calling it now. The school district has a goofy rule that kids are not allowed to have anything mounted to their wheelchair on the bus because they say it is a safety hazard. They originally wanted me to take the mount off and send it in some sort of bag separately on the bus. Well he already takes a large backpack full of orthotics, his feeding pump bag, plus now his talker in the carrying case. The mount is very large and heavy, and sending it in daily is not an option. Because we have to take it off and put it back on everyday, he is not really getting the practice on it that he needs to be able to use it proficiently.
Anyway, his new speech therapist (who I like quite well so far) called the district's assisitve tech department and we met with them on Wednesday so that they can get him a communicator mount and headswitch mount for school. Hopefully they can do that soon. Plus the lady said she would find out who I can complain to about the stupid bus rule.
Medically Jackson is about the same. We started and stopped yet another med from the pain clinic (celexa). We stopped it because Jackson seemed to be agitated on it, he'd been having some sleeping issues and also grinding his teeth ALL THE TIME. We may be starting soon on some high dose zofran to see if that makes a difference, although we hear that insurance may give us some flack about covering it since it is so expensive.
The new neurologist has raised his keppra because when we had labs drawn his levels were lower than they like to see. We are supposed to go for more labs to make sure his levels are right on this dose, but it has to be drawn 1st thing in the AM before medicine and that would mean he would be missing school. We might be able to go on Saturday though, I will have to call and see.
Also, he is going to have a new video EEG done on Oct. 24th. He will be inpatient for at least 1 day, but possibly 2 for this. I have been noticing very few seizures recently, I think maybe only one in the last few weeks. It is nice to have a neuro that actually does something (aside from frustrating me, that is!), but it's a shame that we have to go so far.
And finally, we had his saliva management clinic appointment this week too. They feel he has done all the meds so then our options are either botox or surgery. I think we are going to go ahead and try the botox, just because it may help his GI issues some. Definitely worth a try for sure.
Ok, saving the best news for last here. Are you ready? Hope you are sitting down!
The vaccine case is coming to an end! Lee and I decided we were tired of fighting about what amounted to (in the large picture) a very little bit of money so we quit. Now there has to be a hearing so the Special Master can approve everything and about 30-40 days later we will have money. Woohoooooooooo!!! I can hardly believe it!
Thursday, September 6, 2007
It's been a while and Jackson's been busy
Jackson finally got his Dynavox Mighty Mo communication device last week. We have been doing some experimenting with it trying to figure out the best way to set it up for him. The problem is that with his huge motor issues, he can only use 1 or 2 buttons directly with his hand. The device also has scanning so he can access it with a switch, but it can take a long time to get to the button you want to select with this method, and Jackson does not have the patience for it. I don't blame him, I wouldn't have much patience for that either. But we are working on it.
Also, Jackson started back to school this week. He has a new classroom, new teacher, and all new therapists, so it's a lot of new stuff to get used to. He seems to be enjoying it though.
Also, Jackson started back to school this week. He has a new classroom, new teacher, and all new therapists, so it's a lot of new stuff to get used to. He seems to be enjoying it though.
Sunday, August 26, 2007
New video...check it out!
There is a new video in Jackson's photo gallery. Check it out here. It is of Jackson using his head switch to work a computer program that reads books to him. He is really enjoying the first book and then you can see him pick a different book when the first is done. I was so impressed at how patient he was to wait for the very last book!
Monday, August 20, 2007
So we were sitting around this afternoon
listening to music as we often are. I was watching Jackson listen. I don't think there are many people in the world that you can say that about, but Jackson listens so intently that you can actually see it in his face.
We were listening to this song where the singer says "everybody say hi" and a kid says "hi" and then he says "everybody say hi" again and the kid says "hi" again and then he says "hi" and the kid repeats it a couple more times. (A very annoying song, it will get stuck in your head in a millisecond...song 7 from this CD if you are wondering.) Anyway, I was looking at Jackson listening and he would open his mouth every time the kid said hi and then eventually he actually said hi in exactly the right part of the song. What a sweet moment to witness.
We were listening to this song where the singer says "everybody say hi" and a kid says "hi" and then he says "everybody say hi" again and the kid says "hi" again and then he says "hi" and the kid repeats it a couple more times. (A very annoying song, it will get stuck in your head in a millisecond...song 7 from this CD if you are wondering.) Anyway, I was looking at Jackson listening and he would open his mouth every time the kid said hi and then eventually he actually said hi in exactly the right part of the song. What a sweet moment to witness.
Sunday, August 19, 2007
This week in review
Tuesday we went to Milwaukee for Jackson's pain clinic appointment. He is on a new med now, clonidine. It is a very small amount and so far it has only been 2 days, but I don't think it is working out. He has not been his usually happy social self, not necessarily sleepier though. I think I am going to stop it and call Monday to let them know.
Friday we went to visit my friend Angie in Indiana. She has 5 adorable kids including 6 month old twin girls. Here's a picture of Jackson and the girls getting acquainted.
Saturday we went to a dinner party with 4 couples and 3 kids. Jackson was less than thrilled at having to socialize two days in a row. So today we are just having a quiet day at home.
Friday we went to visit my friend Angie in Indiana. She has 5 adorable kids including 6 month old twin girls. Here's a picture of Jackson and the girls getting acquainted.
Saturday we went to a dinner party with 4 couples and 3 kids. Jackson was less than thrilled at having to socialize two days in a row. So today we are just having a quiet day at home.
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