We saw Lizzie's "substitute" neurologist today. He would like to get an MRI sometime in the next few weeks to check on her brain, which is no surprise; they had told us a while back that they would probably do one when she was getting closer to 2 years old. The MRI she had in September 2011 didn't show anything, but they want to see if, now that her brain is more developed, there will be any lesions or other abnormalities they couldn't see before. Overall, the neurologist thinks she is still doing well and making good progress. He even said that if she is able to go two years seizure-free, they might talk about weaning her off her medication!
Lizzie was also supposed to have occupational therapy and begin speech therapy today; however, due to the several inches of snow that were dumped on us overnight, those appointments got canceled. This weather is crazy! What should have been 8-10 minutes to drive home from the doctor's appointment was an hour and 10 minutes, plus another 45 minutes to get the car up the driveway.
Thursday, February 21, 2013
Monday, September 10, 2012
One year ago
A year ago right now, we were in Lizzie's room at Children's Mercy Hospital, getting ready to spend the night after she'd had several seizures that day. We ended up staying for the next few days while they ran what seemed like endless tests: blood draws, EEGs, MRI, lumbar punctures. The doctors diagnosed her with epilepsy. They told us our three-and-a-half month old had the brain waves of a preemie. They told us they were very concerned. They gave us a list of conditions she might possibly have. The picture they painted for us about Lizzie's life was pretty grim: severe developmental delays; uncontrollable seizures; possibly limited life expectancy. We took her home from the hospital not really knowing what to do or how to prepare ourselves for this.
And yet, this past year has been one unexpected gift after another.
So many people have supported us with prayers, meals, and monetary donations. I'm really not exaggerating when I say that almost every day, someone asks me how Lizzie is doing, whether it's a friend, coworker, fellow church member, or former high school or college classmate. We have been flooded with care and support this year.
Developmental delays? Lizzie's fine and gross motor skills seem to be well within the limits of normal. She may have a bit of delay in her speech development, but I'm not ready to call it severe, and more importantly, the professionals--doctors and therapists--are not calling it severe.
Uncontrollable seizures? As Lizzie's neurologist pointed out a few weeks ago, she's on a fairly low dose of anti-seizure meds. Even so, it's doing a fabulous job of controlling Lizzie's epilepsy. Since mid-October, we have only seen a handful of seizures. The meds are working above and beyond what we expected.
The entire neurology team at Children's Mercy Hospital reviewed Lizzie's case while she was hospitalized last year. They all agreed that her condition was very serious. Inexplicably, things have not turned out the way the doctors said they would.
Who knows what will happen in a year or five or ten? There may be twists and turns in the road ahead, but for now we are extremely grateful for all the support, and extremely grateful that every day, we have this little girl who is curious and active and good-natured. She has beautiful dimples and curly blonde hair. She loves to have books read to her, she loves to snuggle, and she adores her three big sisters. She's a bit of a mama's girl, but that's okay--Mama doesn't mind.
We are very, very, very, very blessed.
And yet, this past year has been one unexpected gift after another.
So many people have supported us with prayers, meals, and monetary donations. I'm really not exaggerating when I say that almost every day, someone asks me how Lizzie is doing, whether it's a friend, coworker, fellow church member, or former high school or college classmate. We have been flooded with care and support this year.
Developmental delays? Lizzie's fine and gross motor skills seem to be well within the limits of normal. She may have a bit of delay in her speech development, but I'm not ready to call it severe, and more importantly, the professionals--doctors and therapists--are not calling it severe.
Uncontrollable seizures? As Lizzie's neurologist pointed out a few weeks ago, she's on a fairly low dose of anti-seizure meds. Even so, it's doing a fabulous job of controlling Lizzie's epilepsy. Since mid-October, we have only seen a handful of seizures. The meds are working above and beyond what we expected.
The entire neurology team at Children's Mercy Hospital reviewed Lizzie's case while she was hospitalized last year. They all agreed that her condition was very serious. Inexplicably, things have not turned out the way the doctors said they would.
Who knows what will happen in a year or five or ten? There may be twists and turns in the road ahead, but for now we are extremely grateful for all the support, and extremely grateful that every day, we have this little girl who is curious and active and good-natured. She has beautiful dimples and curly blonde hair. She loves to have books read to her, she loves to snuggle, and she adores her three big sisters. She's a bit of a mama's girl, but that's okay--Mama doesn't mind.
We are very, very, very, very blessed.
Friday, August 31, 2012
15 months
Today I took Lizzie to the pediatrician for her 15-month checkup. Apparently she's going to be a supermodel, because she was in the 90th percentile for height and 30th percentile for weight. She is a long and lean little girl! After the exam, the doctor said she looks good and is healthy. She asked how things were going with neuro and I told her about the appointment a couple of weeks ago. She was glad to hear things are going well there. She asked if Lizzie had at least five words in her vocabulary. I said, "Well, not spoken words, but she knows eight to ten words in sign language!" Dr. M would still like us to keep working on the sounds, but is glad she's communicating in some way. Lizzie's next appointment with the pediatrician will be at 18 months.
The OT came on Wednesday and was pleased with how much progress Lizzie is making in sign language. She can consistently sign mama, dada, dog, milk, more, cracker, apple, please, and book. There are also a few others that she does some of the time. The Baby Signing Time DVDs are really helping; Lizzie doesn't pay much attention to them, but they're helping the rest of the family learn the signs so we can use them with Lizzie later! Speech therapy is still on the table for the future, but for now the OT is going to give her a bit longer to see what kind of progress she'll have in making sounds.
The OT came on Wednesday and was pleased with how much progress Lizzie is making in sign language. She can consistently sign mama, dada, dog, milk, more, cracker, apple, please, and book. There are also a few others that she does some of the time. The Baby Signing Time DVDs are really helping; Lizzie doesn't pay much attention to them, but they're helping the rest of the family learn the signs so we can use them with Lizzie later! Speech therapy is still on the table for the future, but for now the OT is going to give her a bit longer to see what kind of progress she'll have in making sounds.
Tuesday, August 14, 2012
Today's appointment
We took Lizzie to her neurology appointment today. Dr. K thinks she's looking good and doing well. He decided to take her off of the pyridoxine and leucovorin she's been on since last September. He also increased her dose of Keppra (the anti-seizure med). She'll still take it twice a day, just 0.5 mL more than before. He said she's still on a pretty low dose, but he wants to keep it as low as possible as long as it's working for her. He said he does not need to do another EEG at this time because the most recent one she had, in March, was similar to the one she had prior to that, in October.
Dr. K will be gone for the next year on a leave of absence, but he is assigning her to Dr. A while he's away. He said that, assuming all continues to go well, she needs to be seen again in six months. When it gets closer to her 2nd birthday, he wants another MRI of her brain. He especially wants to see the right side of her brain, where it keeps showing slower brain waves on her EEGs. He wants to see if there's a structural abnormality or something else that might be causing the slower brain waves. I'm sure we'll hear more about scheduling the MRI when we see Dr. A in February.
Overall, it was a great visit; very positive!
Dr. K will be gone for the next year on a leave of absence, but he is assigning her to Dr. A while he's away. He said that, assuming all continues to go well, she needs to be seen again in six months. When it gets closer to her 2nd birthday, he wants another MRI of her brain. He especially wants to see the right side of her brain, where it keeps showing slower brain waves on her EEGs. He wants to see if there's a structural abnormality or something else that might be causing the slower brain waves. I'm sure we'll hear more about scheduling the MRI when we see Dr. A in February.
Overall, it was a great visit; very positive!
Wednesday, August 1, 2012
OT visit today
Lizzie's OT came again today. She was glad to see that Lizzie's walking now; in fact, Lizzie has even been taking more steps at a time just in the last few days, so we're happy with her progress there. The OT said Lizzie's motor skills seem to be doing just fine. She commented on Lizzie's demeanor and noticed how cheerful she is.
Most of what we talked about was her language. The OT asked if Lizzie ever seems to get frustrated that she can't communicate something to us, and we said not really. She said that kids who always seem to be okay with pretty much whatever--that can actually be a sign of a delay. She asked us more questions, and observed Lizzie for a while. The conclusion seems to be that Lizzie is a little delayed in her language skills, but is still making some progress. We're going to keep an eye on it another month, and if she hasn't made very many gains by the end of August, they will see about getting a speech therapist for her.
In the meantime, we will work on pointing to pictures and objects and naming them and helping Lizzie point at them too; we will practice giving her two options for things she wants and letting her choose; we will give her directions and help her reinforce her responses (such as "Bring me the ball" and help her get the ball, or "Where's Mommy" and then I call her name and wave); we will work with her on animals and their sounds; and we will keep doing sign language with her. The OT recommended a series of DVDs called Baby Signing Time; I've put those on hold at the library and will pick them up as soon as they're available. So we have a lot of work to do this month!
Most of what we talked about was her language. The OT asked if Lizzie ever seems to get frustrated that she can't communicate something to us, and we said not really. She said that kids who always seem to be okay with pretty much whatever--that can actually be a sign of a delay. She asked us more questions, and observed Lizzie for a while. The conclusion seems to be that Lizzie is a little delayed in her language skills, but is still making some progress. We're going to keep an eye on it another month, and if she hasn't made very many gains by the end of August, they will see about getting a speech therapist for her.
In the meantime, we will work on pointing to pictures and objects and naming them and helping Lizzie point at them too; we will practice giving her two options for things she wants and letting her choose; we will give her directions and help her reinforce her responses (such as "Bring me the ball" and help her get the ball, or "Where's Mommy" and then I call her name and wave); we will work with her on animals and their sounds; and we will keep doing sign language with her. The OT recommended a series of DVDs called Baby Signing Time; I've put those on hold at the library and will pick them up as soon as they're available. So we have a lot of work to do this month!
Friday, July 20, 2012
The saga of the appointment
We had a bit of frustrating news this week. We got a letter from Children's Mercy saying that Lizzie's neurologist, Dr. K, will be taking a one-year personal leave of absence beginning August 17th. Of course doctors are people too, and I'm sure he has something significant going on in his own life so that he feels the need to do this. However, it introduces a lot of unknowns into our situation since he's been Lizzie's doctor all along! The last time we saw him, he said that Lizzie didn't need to be seen again for six months, but that would put her appointment in September, after he's gone.
As soon as I read the letter, I immediately called Dr. K's office to see if we could get an appointment with him anytime before he leaves. I left a message for the nurse asking if we could see him anytime between now and August 8th. They called back and said they didn't have anything. The only appointments they had available were on August 14th and 15th. I explained that I am an elementary school teacher, and I have to report back to work on August 8th. I asked if we could come sometime before that if they had a cancellation, and they said yes, so I asked if they could add my name to a waiting list or something. They said no, that I would just have to call the office a few times a week and ask about cancellations. They asked if I had any other family members who could bring Lizzie to the appointment. I said, "Yes, my husband could bring her; but I also want to be there to talk to the doctor because he's the one who is most familiar with my daughter's history, and if he's going to be gone for a year, there are some questions I'd like to ask him about her."
I asked which doctor Lizzie will be seeing after hers is gone, but they couldn't tell me that. They said it would probably be one of two but that ultimately the decision was up to the nurses, so I asked when she might be able to get an appointment with one of them if we waited. Dr. A is gone to a conference in September, and Dr. P is only seeing patients on Mondays and Tuesdays in September and is already full. So with either of them, we'd be looking at a date past the six months Dr. K recommended for her next appointment.
At this point, I was really discouraged. If they'd let us know sooner that Lizzie's doctor was leaving, I would naturally have called sooner and we might have been able to get in before I have to go back to work. August 14th and 15th are just about the worst possible days for me to miss work. August 15th will be the first day of school for my students, so I absolutely cannot miss that day; but August 14th we have a mandatory meeting in the morning and the rest of the day will be spent doing last-minute things getting ready for the first day of school. I called my principal and explained the situation, and luckily he was understanding. He said that I had to be at the meeting in the morning, but that if I needed to be gone for a little while later in the day, I could do that. So I called the neurologist's office back and set up an appointment for late morning on the 14th. Not ideal, but it'll have to do!
In better news, Lizzie has another tooth about to come through, and she's getting a little more confident with her walking. We'll keep her practicing! Mostly we have just been trying to keep cool with the triple-digit temps this week; we're sticking with indoor activities. We saw Mr. Stinky Feet at the library, and today we're going to Lakeside Nature Center. Lizzie just goes along with whatever we have planned. We are lucky to have such a good-natured, easygoing girl!
As soon as I read the letter, I immediately called Dr. K's office to see if we could get an appointment with him anytime before he leaves. I left a message for the nurse asking if we could see him anytime between now and August 8th. They called back and said they didn't have anything. The only appointments they had available were on August 14th and 15th. I explained that I am an elementary school teacher, and I have to report back to work on August 8th. I asked if we could come sometime before that if they had a cancellation, and they said yes, so I asked if they could add my name to a waiting list or something. They said no, that I would just have to call the office a few times a week and ask about cancellations. They asked if I had any other family members who could bring Lizzie to the appointment. I said, "Yes, my husband could bring her; but I also want to be there to talk to the doctor because he's the one who is most familiar with my daughter's history, and if he's going to be gone for a year, there are some questions I'd like to ask him about her."
I asked which doctor Lizzie will be seeing after hers is gone, but they couldn't tell me that. They said it would probably be one of two but that ultimately the decision was up to the nurses, so I asked when she might be able to get an appointment with one of them if we waited. Dr. A is gone to a conference in September, and Dr. P is only seeing patients on Mondays and Tuesdays in September and is already full. So with either of them, we'd be looking at a date past the six months Dr. K recommended for her next appointment.
At this point, I was really discouraged. If they'd let us know sooner that Lizzie's doctor was leaving, I would naturally have called sooner and we might have been able to get in before I have to go back to work. August 14th and 15th are just about the worst possible days for me to miss work. August 15th will be the first day of school for my students, so I absolutely cannot miss that day; but August 14th we have a mandatory meeting in the morning and the rest of the day will be spent doing last-minute things getting ready for the first day of school. I called my principal and explained the situation, and luckily he was understanding. He said that I had to be at the meeting in the morning, but that if I needed to be gone for a little while later in the day, I could do that. So I called the neurologist's office back and set up an appointment for late morning on the 14th. Not ideal, but it'll have to do!
In better news, Lizzie has another tooth about to come through, and she's getting a little more confident with her walking. We'll keep her practicing! Mostly we have just been trying to keep cool with the triple-digit temps this week; we're sticking with indoor activities. We saw Mr. Stinky Feet at the library, and today we're going to Lakeside Nature Center. Lizzie just goes along with whatever we have planned. We are lucky to have such a good-natured, easygoing girl!
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