Joon is doing really great. She's walking almost normally now, she's pretty much back to how she was before, except she's still not talking. She had a few words, but she stopped saying those several days ago. Right now she's babbling like Penelope. We should be going home Monday. They were going to transfer her down to the rehab floor for a couple of weeks of intensive therapy, but now she doesn't need it anymore. All she needs is the speech therapy. They're going to do a blood cell count just to make sure she's good to go. They've been preparing us for discharge, setting up appointments and getting speech therapy set up for us. They're teaching us how to care for her PICC line, doing things like drawing up saline, flushing the line and changing the caps.
Penny is getting so big. She's sleeping pretty well now, we just have to swaddle her. She wants to stand all the time. Whenever her feet touch anything, she pushes off to stand. Her two teeth are still right below the surface of her gums. They've been there for more than a month, I don't know what's taking them so long. But Joon was teething for two months before her first teeth came in.
Joon is so sweet to Penny. She's always trying to give her toys and things. She likes to put her little animals on top of her, or try to get her to hold them. Today she put a bunch of cookie crumbs on her. She touches her so gently and carefully, and she's so bashful about it.
Saturday, July 31, 2010
Sunday, July 25, 2010
Getting better.
Joon walked today! She keeps trying to climb down out of the bed all the time. Sometimes she's not allowed to because she's hooked up to various things that we can't move. But whenever possible, we encourage her to get out of bed. Now, she's able to climb down and stay on her feet and easily cruise along the side of the bed while holding on. Then she voluntarily let go, and walked a few steps over to the chair, then kept walking back and forth between the furniture. She's still wobbly, but she does it! So exciting!
So right now, she's doing great in everything, except for talking and drinking. She just doesn't want to drink at all. Today, she actually took several sips of juice, I think it was about half of a juice box, so about two ounces. This is the first time she's drank anything in three weeks! But that was this morning, and she's been refusing again since then.
She's still not talking. She was saying a few things, but now the past couple of days she doesn't want to talk. She is finally getting pretty consistent with nodding or shaking her head for yes and no, and we're working on sign language. She used to sign a lot, but then she stopped signing after she started talking, so she doesn't remember any signs, and I don't remember much either.
Today the doctors said Joon may be able to move down to the rehab floor as early as tomorrow! They want her to be down there for intensive therapy for a while, probably about two weeks. They have outpatient PT, OT, and speech therapy, but only 3 times a week. She's going to need it three times a day, seven days a week, so she'll have to stay here for that.
So right now, she's doing great in everything, except for talking and drinking. She just doesn't want to drink at all. Today, she actually took several sips of juice, I think it was about half of a juice box, so about two ounces. This is the first time she's drank anything in three weeks! But that was this morning, and she's been refusing again since then.
She's still not talking. She was saying a few things, but now the past couple of days she doesn't want to talk. She is finally getting pretty consistent with nodding or shaking her head for yes and no, and we're working on sign language. She used to sign a lot, but then she stopped signing after she started talking, so she doesn't remember any signs, and I don't remember much either.
Today the doctors said Joon may be able to move down to the rehab floor as early as tomorrow! They want her to be down there for intensive therapy for a while, probably about two weeks. They have outpatient PT, OT, and speech therapy, but only 3 times a week. She's going to need it three times a day, seven days a week, so she'll have to stay here for that.
Saturday, July 24, 2010
Presents.
Joon received a package full of toys from an online friend and her bbgurls. She loves them, especially this yellow monster that makes noise when you throw it or hit it. It's great because she's throwing it around and actually crawling to go pick it up!
Thanks so much, Megan! <3
Thanks so much, Megan! <3
Friday, July 23, 2010
The last few days.
Tuesday had some goods and some bads.
Good: They are pretty confident Joon's condition isn't caused by anything contagious, so she's off of precautions, and we got the all-clear to take her out of the room. We put her in the wheelchair, and took her around the floor. We went to the end of the hall, where the walls are all covered in windows, and Joon looked out the windows.
Bad: She had four seizures. They've been trying to wean her off of one of her seizure meds, and it looks like that's not working out well. When she has her seizures, she still functions normally, but her eyes just bounce around. Sometimes her eyebrows bounce too. But everything else is normal. She still has purposeful movement, and she can vocalize. So they're called complex partial seizures.
Good: We had a nice visit from some friends. Unfortunately, Joon wasn't really interested in playing with them, probably because she wasn't feeling good, but I enjoyed seeing them.
Bad: Joon vomited twice. She didn't want to eat much of her dinner, and seemed like she didn't feel good. Then she threw up what little she had eaten, and seemed happier after that. Then when we were giving her the evening meds, she threw up again. She hasn't done it again since then, so we think it was probably just something she ate, and not another illness.
Wednesday was mostly good. They started the IVIG treatment, and I think it's helping.
The physical therapist and occupational therapist took us down to the therapy gym. Joon was really not in the mood at first, but she slowly came around, and she eventually played with this ball with different animal buttons on it.
Joon had three seizures. They were the complex partial seizures again. They decided to hook her up to the EEG again, for another 24 hours, to see if they could capture one of the seizrues so they could see what was going on.
My mom came up, and brought a lot of Joon's toys. She stayed with Joon for the night, and Andrew and I went home. We watched last week's new Futurama, and I had a hard lemonade and it made me drunk, lol.
We came back up here yesterday. We had a lot of delays, so we didn't get here until the afternoon.
We had to give up our goldfish. We have a 125 gallon tank, which had 9 fancy goldfish (mostly orandas). While Joon has been sick, we've been staying in the hospital and only coming home about once a week, for a night at a time. My mom has been feeding them, but we haven't had time to do anything else with them. The aquariums haven't been cleaned in about a month. When we went home this time, we were down two fish. We know we're going to be at the hospital for a few more weeks, so the rest of the fish wouldn't have very good chances. So we decided it would be in their best interest to be elsewhere. It sucks because we had some really nice goldfish, but it had to be done. We kept Joon's goldfish, and put him into the 40 gallon, and moved the turtles into the 125.
Joon spent the entire day playing with my mom and the toys she brought from home. She was in a much better mood than she had been during the time she's been sick. She walked a few steps while holding onto the bed. While she was sitting on the couch, she tried to get into a standing position. And she said "mouth" and "hey."
She had three seizures, and they were longer than the previous ones had been. She finished her EEG, and they removed the electrodes. The oil they use to remove the electrodes left her hair all nasty, and her hair is tangled from being wrapped up for 24 hours. So we're going to have to wash her hair in a basin again. But I forgot to bring her goggles and the shampoo she likes from home. So hopefully my mom will bring them and we'll be able to do that today.
Since Joon's contact precautions have been lifted, there's been a different dog trying to visit her every day. The hospital has a Prescription Pet Program, where volunteers bring their well-mannered dogs to visit the kids. It's a great program, because it does a lot to help raise the kids' spirits. Unfortunately, they've been showing up when Joon is not in a good mood, so she hasn't wanted to play with the dogs so far. But each dog has business cards with their picture, so we've got a collection of three doggy business cards.
Joon received a gift of a dozen balloons and a bear, from some mysterious online friends! She loved them!
Good: They are pretty confident Joon's condition isn't caused by anything contagious, so she's off of precautions, and we got the all-clear to take her out of the room. We put her in the wheelchair, and took her around the floor. We went to the end of the hall, where the walls are all covered in windows, and Joon looked out the windows.
Bad: She had four seizures. They've been trying to wean her off of one of her seizure meds, and it looks like that's not working out well. When she has her seizures, she still functions normally, but her eyes just bounce around. Sometimes her eyebrows bounce too. But everything else is normal. She still has purposeful movement, and she can vocalize. So they're called complex partial seizures.
Good: We had a nice visit from some friends. Unfortunately, Joon wasn't really interested in playing with them, probably because she wasn't feeling good, but I enjoyed seeing them.
Bad: Joon vomited twice. She didn't want to eat much of her dinner, and seemed like she didn't feel good. Then she threw up what little she had eaten, and seemed happier after that. Then when we were giving her the evening meds, she threw up again. She hasn't done it again since then, so we think it was probably just something she ate, and not another illness.
Wednesday was mostly good. They started the IVIG treatment, and I think it's helping.
The physical therapist and occupational therapist took us down to the therapy gym. Joon was really not in the mood at first, but she slowly came around, and she eventually played with this ball with different animal buttons on it.
Joon had three seizures. They were the complex partial seizures again. They decided to hook her up to the EEG again, for another 24 hours, to see if they could capture one of the seizrues so they could see what was going on.
My mom came up, and brought a lot of Joon's toys. She stayed with Joon for the night, and Andrew and I went home. We watched last week's new Futurama, and I had a hard lemonade and it made me drunk, lol.
We came back up here yesterday. We had a lot of delays, so we didn't get here until the afternoon.
We had to give up our goldfish. We have a 125 gallon tank, which had 9 fancy goldfish (mostly orandas). While Joon has been sick, we've been staying in the hospital and only coming home about once a week, for a night at a time. My mom has been feeding them, but we haven't had time to do anything else with them. The aquariums haven't been cleaned in about a month. When we went home this time, we were down two fish. We know we're going to be at the hospital for a few more weeks, so the rest of the fish wouldn't have very good chances. So we decided it would be in their best interest to be elsewhere. It sucks because we had some really nice goldfish, but it had to be done. We kept Joon's goldfish, and put him into the 40 gallon, and moved the turtles into the 125.
Joon spent the entire day playing with my mom and the toys she brought from home. She was in a much better mood than she had been during the time she's been sick. She walked a few steps while holding onto the bed. While she was sitting on the couch, she tried to get into a standing position. And she said "mouth" and "hey."
She had three seizures, and they were longer than the previous ones had been. She finished her EEG, and they removed the electrodes. The oil they use to remove the electrodes left her hair all nasty, and her hair is tangled from being wrapped up for 24 hours. So we're going to have to wash her hair in a basin again. But I forgot to bring her goggles and the shampoo she likes from home. So hopefully my mom will bring them and we'll be able to do that today.
Since Joon's contact precautions have been lifted, there's been a different dog trying to visit her every day. The hospital has a Prescription Pet Program, where volunteers bring their well-mannered dogs to visit the kids. It's a great program, because it does a lot to help raise the kids' spirits. Unfortunately, they've been showing up when Joon is not in a good mood, so she hasn't wanted to play with the dogs so far. But each dog has business cards with their picture, so we've got a collection of three doggy business cards.
Joon received a gift of a dozen balloons and a bear, from some mysterious online friends! She loved them!
Monday, July 19, 2010
Fast forward.
Today has left me feeling optimistic.
Joon started out in a bad mood. She didn't want to cooperate with her therapists, and she was very fussy. But then we opened the window shade, and took her over to the window. We sat on the fold out couch that we've been sleeping on, and looked out the window.
We played on the couch for a while, and then Joon started trying to climb off the bed. She turned over and swung her legs over the side of the bed, then lowered herself to her feet.
She was all wobbly and leaned on the couch, but then she got her legs straightened out under her, she turned around, and even let go for a few seconds.
It was awesome.
And then I put down the tumbling mat the physical therapist brought yesterday, and Joon and I played on the floor for a long time. She rolled around and did all sorts of things. It was a huge improvement over the past few days.
Joon is still not drinking, and we need to find out why, and figure out how to get her drink. The physical therapist watched her eat breakfast, and then she asked someone from the swallow team to come in and watch her eat lunch. They were talking about doing a swallow study, which would involve taking her down to radiology again and doing an x-ray video while she's eating and drinking, but they decided to just do an informal study, and just watch her eat. The woman from the swallow team said it seems like the liquid just comes up too quickly through the straw, and she gets too much and gets overwhelmed by it, and that makes her scared to try to drink. So they gave us some thickener to add to her drinks, and we just have to keep offering her liquids and she should eventually drink.
Right now, the neurologists are no longer sure it's ADEM, because of the way she's been responding to the treatment. They're saying it may be NMDA encephalitis. They tested for it, but it'll take weeks to get the results. But the treatment is the same in the beginning, just the steroids and then IVIG, and then if those didn't work, another medication. But that would wait until we get the test results. So right now, we're continuing with the previous plan.
Joon started out in a bad mood. She didn't want to cooperate with her therapists, and she was very fussy. But then we opened the window shade, and took her over to the window. We sat on the fold out couch that we've been sleeping on, and looked out the window.
We played on the couch for a while, and then Joon started trying to climb off the bed. She turned over and swung her legs over the side of the bed, then lowered herself to her feet.
She was all wobbly and leaned on the couch, but then she got her legs straightened out under her, she turned around, and even let go for a few seconds.
It was awesome.
And then I put down the tumbling mat the physical therapist brought yesterday, and Joon and I played on the floor for a long time. She rolled around and did all sorts of things. It was a huge improvement over the past few days.
Joon is still not drinking, and we need to find out why, and figure out how to get her drink. The physical therapist watched her eat breakfast, and then she asked someone from the swallow team to come in and watch her eat lunch. They were talking about doing a swallow study, which would involve taking her down to radiology again and doing an x-ray video while she's eating and drinking, but they decided to just do an informal study, and just watch her eat. The woman from the swallow team said it seems like the liquid just comes up too quickly through the straw, and she gets too much and gets overwhelmed by it, and that makes her scared to try to drink. So they gave us some thickener to add to her drinks, and we just have to keep offering her liquids and she should eventually drink.
Right now, the neurologists are no longer sure it's ADEM, because of the way she's been responding to the treatment. They're saying it may be NMDA encephalitis. They tested for it, but it'll take weeks to get the results. But the treatment is the same in the beginning, just the steroids and then IVIG, and then if those didn't work, another medication. But that would wait until we get the test results. So right now, we're continuing with the previous plan.
Sunday, July 18, 2010
Worry.
Joon's condition has remained unchanged over the past few days. She has improved a lot in the past week and a half, but she's still nowhere near where she was before. I'd say she's on the level of a 9 month old right now. She can sit up unassisted for short periods of time, but she can't stand without support. She can now roll over and crawl a little bit. She's eating well again, but she still can't drink. The only thing she can say right now is "Yeah."
Before she got sick, she used to be quite advanced in her speech. She had started talking early, and quickly had a very large vocabulary. She loved talking, and would spend all day chattering away, all the time. She'd tell everyone long stories about things she had done, and she could spend twenty minutes telling you all about going for a walk around the block. She'd make up fabulous stories about her toy animals, and make up dialog for them. She talked for hours and hours every day, and now, all she can say is "Yeah."
A few days ago, I was watching some videos of Joon just being her normal self before she got sick. She was talking and singing, running and jumping. Andrew said "So she's never going to be like that again?" I told him I don't know, the doctors here are really great, and I'm sure they'll be able to help her. But I wasn't sure. For a long time, I thought she'd be back to normal any day. I was confident that this would just go away. But now, I don't know. Most of the time, probably 90% of the time, I think she'll be okay. But the rest of the time, I'm scared. I'm terrified that she's recovered as much as she's going to, and this will be it.
When I was reading about ADEM, some things said she had a good outlook, and some things made it seem more negative. Overall, I felt like she would probably have a good prognosis, and I was feeling okay about this.
I asked the doctor today what he thought of her long-term prognosis. He said he doesn't know, she might make a full recovery, she might recover half of what she lost, or she might not recover any more at all. He said each possibility is equally likely.
I'm having a hard time keeping positive about it. It's all just so uncertain. We have no way of predicting how she's going to do. She could be like this for the rest of her life.
I have a few videos of her that were recorded in May and June, and some from the past week.
This one was from May 15, right after Penelope was born. Joon was jumping on the trampoline, then she "read" a book to Penny, making up the words as she went along. Then she sang Penny her own version of Hush Little Baby, promising that Grandma will buy her lots of things, like a balloon, a whale, and a watermelon.
This was from June, and she was talking about The Wiggles, and what each one does, Anthony eats, Murray plays music, Jeff sleeps, etc. We talk about the "Where's Jeff?" song, which talks about places Jeff sleeps. Then she talks about the birds eating dragonflies.
The next two videos show what Joon is like now. The first video is of her relearning to eat, and the second is of her playing with her dad. They both show how her motor skills are impaired, and she can't talk.
It just breaks my heart to see the huge difference. Watching these videos and thinking about how she was before, I miss my little girl, even though she's right here next to me.
Before she got sick, she used to be quite advanced in her speech. She had started talking early, and quickly had a very large vocabulary. She loved talking, and would spend all day chattering away, all the time. She'd tell everyone long stories about things she had done, and she could spend twenty minutes telling you all about going for a walk around the block. She'd make up fabulous stories about her toy animals, and make up dialog for them. She talked for hours and hours every day, and now, all she can say is "Yeah."
A few days ago, I was watching some videos of Joon just being her normal self before she got sick. She was talking and singing, running and jumping. Andrew said "So she's never going to be like that again?" I told him I don't know, the doctors here are really great, and I'm sure they'll be able to help her. But I wasn't sure. For a long time, I thought she'd be back to normal any day. I was confident that this would just go away. But now, I don't know. Most of the time, probably 90% of the time, I think she'll be okay. But the rest of the time, I'm scared. I'm terrified that she's recovered as much as she's going to, and this will be it.
When I was reading about ADEM, some things said she had a good outlook, and some things made it seem more negative. Overall, I felt like she would probably have a good prognosis, and I was feeling okay about this.
I asked the doctor today what he thought of her long-term prognosis. He said he doesn't know, she might make a full recovery, she might recover half of what she lost, or she might not recover any more at all. He said each possibility is equally likely.
I'm having a hard time keeping positive about it. It's all just so uncertain. We have no way of predicting how she's going to do. She could be like this for the rest of her life.
I have a few videos of her that were recorded in May and June, and some from the past week.
This one was from May 15, right after Penelope was born. Joon was jumping on the trampoline, then she "read" a book to Penny, making up the words as she went along. Then she sang Penny her own version of Hush Little Baby, promising that Grandma will buy her lots of things, like a balloon, a whale, and a watermelon.
This was from June, and she was talking about The Wiggles, and what each one does, Anthony eats, Murray plays music, Jeff sleeps, etc. We talk about the "Where's Jeff?" song, which talks about places Jeff sleeps. Then she talks about the birds eating dragonflies.
The next two videos show what Joon is like now. The first video is of her relearning to eat, and the second is of her playing with her dad. They both show how her motor skills are impaired, and she can't talk.
It just breaks my heart to see the huge difference. Watching these videos and thinking about how she was before, I miss my little girl, even though she's right here next to me.
Saturday, July 17, 2010
Diagnosis and prognosis.
Joon is not doing as good as she was two days ago. She's still good, though. She's just not talking as much as she was that day. She mostly just says "yeah" and that's pretty much it. It seems like she tries to say "no", but just gets the N sound. The doctors said it's normal for her progress to go up and down a bunch of times over the first couple of weeks.
She's had no appetite today. She ate a good amount of breakfast, but then no lunch, and only a chicken nugget for dinner. We think it's probably due to her seizure medication. It's hard on the stomach, and so they're also giving her zantac to help out with that, but maybe it's not helping enough. I'm pretty uncomfortable with the amount of medications she's on, but it's supposed to be really short-term, so I think I can deal with it. If the doctors want to continue the meds for longer, I'll want to discuss other options.
Today the neurologists said it looks like the swelling is probably more global rather than localized to the cerebellum. So they're calling it Acute disseminated encephalomyelitis (ADEM) now instead of Cerebellitis. It's similar to Multiple Sclerosis, but it's caused by some sort of virus getting into her brain. The average recovery time is 1-6 months. 50 to 75% of cases have a full recovery, and up to 70 to 90% recover with some minor disability.
The standard treatment is to start with high doses of IV steroids, and then lower doses orally for 3-6 weeks. Also, high doses of IVIG, which is intravenous immunoglobulin, which is where they take antibodies from over 1,000 people, and mix them together, and inject them into Joon. This is supposed to be the best course of treatment, and this is what we'll be doing. I think she should have a pretty good prognosis with this treatment.
The prognosis is generally better in kids that are older, in one study, younger kids ended up with a slightly lower IQ, and behavioural problems. But the prognosis is also better in cases that present with fever, and Joon has had a fever. So I'm going to stay positive that she'll have a full and speedy recovery.
She's had no appetite today. She ate a good amount of breakfast, but then no lunch, and only a chicken nugget for dinner. We think it's probably due to her seizure medication. It's hard on the stomach, and so they're also giving her zantac to help out with that, but maybe it's not helping enough. I'm pretty uncomfortable with the amount of medications she's on, but it's supposed to be really short-term, so I think I can deal with it. If the doctors want to continue the meds for longer, I'll want to discuss other options.
Today the neurologists said it looks like the swelling is probably more global rather than localized to the cerebellum. So they're calling it Acute disseminated encephalomyelitis (ADEM) now instead of Cerebellitis. It's similar to Multiple Sclerosis, but it's caused by some sort of virus getting into her brain. The average recovery time is 1-6 months. 50 to 75% of cases have a full recovery, and up to 70 to 90% recover with some minor disability.
The standard treatment is to start with high doses of IV steroids, and then lower doses orally for 3-6 weeks. Also, high doses of IVIG, which is intravenous immunoglobulin, which is where they take antibodies from over 1,000 people, and mix them together, and inject them into Joon. This is supposed to be the best course of treatment, and this is what we'll be doing. I think she should have a pretty good prognosis with this treatment.
The prognosis is generally better in kids that are older, in one study, younger kids ended up with a slightly lower IQ, and behavioural problems. But the prognosis is also better in cases that present with fever, and Joon has had a fever. So I'm going to stay positive that she'll have a full and speedy recovery.
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