Much better than last year, don't you think?
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.
Saturday, August 11, 2007
G tube feeding
Jackson has a GJ feeding tube. GJ stands for gastric-jejunal, gastric being the stomach and jejunal is the small intestines. His tube has 3 ports... one is the gastric port which goes directly into the stomach, the second is the jejunal port which goes through the stomach and ends up in the small intestines, and the third port is the balloon that hold the tube in place when it is filled with water. It is a low profile button rather than a long tube, so it is easily hidden when not in use.
Here is a picture of it.
The port on the left is the gastric, the port on top is the jejunal port (it has an extension tube attached in this pic), and the port on the right is the balloon port. We keep a piece of gauze under it partly to cushion his skin from the button rubbing on it and partly to absorb any moisture.
Jackson originally had a G-tube placed but because of his vomiting the docs decided it would be better to feed him into his intestines so he would be able to get all his nutrition and the GJ was placed instead. So for over 2 years now we have been feeding him into his J port.
I decided that since his stomach was always full of bile anyway, we might as well try some feeds directly in the stomach. I was very surprised at how well Jackson has been doing with it. We have built up and now he takes all of his daytime nutrition and fluids through his G port! He still takes his night feeds by J tube, and we use the G port to drain his stomach while he sleeps.
Here is a picture of it.
The port on the left is the gastric, the port on top is the jejunal port (it has an extension tube attached in this pic), and the port on the right is the balloon port. We keep a piece of gauze under it partly to cushion his skin from the button rubbing on it and partly to absorb any moisture.
Jackson originally had a G-tube placed but because of his vomiting the docs decided it would be better to feed him into his intestines so he would be able to get all his nutrition and the GJ was placed instead. So for over 2 years now we have been feeding him into his J port.
I decided that since his stomach was always full of bile anyway, we might as well try some feeds directly in the stomach. I was very surprised at how well Jackson has been doing with it. We have built up and now he takes all of his daytime nutrition and fluids through his G port! He still takes his night feeds by J tube, and we use the G port to drain his stomach while he sleeps.
Saturday, August 4, 2007
Dentist Appointment
We went to the non-wheelchair accessible special needs dentist yesterday (although they say that within a year the office will be moving to a new accessible location).
It went very well considering everything Jackson has going on (grinding, vomiting, oral defensiveness, etc). Even though we do not use toothpaste with him (the taste makes him barf) his teeth looked very clean. There was one small area of calculus behind the bottom front teeth. She was able to scrape the calculus and give his teeth a cleaning. There was lots of gagging, but he didn't barf...yay!!
The bad news is that in the somewhat near future he will need crowns on his molars because of his grinding, but it can wait at least until his next appointment in 6 months.
It went very well considering everything Jackson has going on (grinding, vomiting, oral defensiveness, etc). Even though we do not use toothpaste with him (the taste makes him barf) his teeth looked very clean. There was one small area of calculus behind the bottom front teeth. She was able to scrape the calculus and give his teeth a cleaning. There was lots of gagging, but he didn't barf...yay!!
The bad news is that in the somewhat near future he will need crowns on his molars because of his grinding, but it can wait at least until his next appointment in 6 months.
Thursday, August 2, 2007
Back from vacation
We went to visit family in Ohio and then had a few days in Michigan before heading home. Let's just say that Jackson really prefers to stay home. Traveling is pretty hard on him. We did have some fun though.
Here is Jackson with Granny and Uncle Jason
Daddy and Jackson at the U of M botanical gardens
At the Butterfly House
Here is Jackson with Granny and Uncle Jason
Daddy and Jackson at the U of M botanical gardens
At the Butterfly House
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