The Supervisor
His house is cute on the outside, and "college" on the inside!
Three Men and a House. One is vegan, one is vegetarian, and one is Chris. I know they're going to have a great year!
July 17, 2011
Movin' on out
No more dorm life! Yesterday we officially moved Chris into his rental house down in Williamsburg. He's been staying there off and on this summer. Since he has a summer job now, we figured we'd better get the bulk of his stuff moved in. I'm sure he'll appreciate having a real bed now! No more old futon.
July 10, 2011
Nan Talk
Hannah and I were in the car. I had a small burp. I said, "Excuse me."
Hannah subsequently followed up with her own burp. She said, "Excuse we."
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Long live Elvis! We were at the Williamsburg Outlets the other day (visiting Chris). Hannah was so excited to see an Elvis store!
Only problem was that it just looked like a "L-Elvis" store:
Hannah subsequently followed up with her own burp. She said, "Excuse we."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Long live Elvis! We were at the Williamsburg Outlets the other day (visiting Chris). Hannah was so excited to see an Elvis store!
Only problem was that it just looked like a "L-Elvis" store:
July 5, 2011
Research Study 4th Visit
Friday was our last visit to Kennedy Krieger. We are always met by Miss M., the Research Study Assistant. She's our guide and chaperone throughout the many-hour long visits. She schedules our appointments and answers all questions, and waits with us through all sessions.
First stop was Neuropsychology. Hannah was happy to see the psychologist again (she loves those tests, crazy girl). She was in there about 75 minutes while I filled out the parent questionnaires--they always seem to have very obvious questions that are targeting the autism population. When she came out, it was my turn to be interviewed by the psychologist. She is quite nice. She began the interview with me, recording answers as she proceeded. She started laughing when she got to the question about whether Hannah could/would initiate a conversation with unfamiliar people (answer is: Yes). Apparently, in the middle of one of Hannah's tests there was a picture of some kids in costumes trick-or-treating. There was a witch, a clown, a cowboy and a few other costumes. Hannah answered whatever question was asked, but then started a conversation about how the Egyptians would remove the brain from a dead person's head in preparation for mummification. Sometimes Hannah's input to conversations seem total non-sequiturs. But they never are. The psychologist looked closer at the picture, and sure enough, there was a kid in a mummy costume!
All the testing went well. We had a quick lunch before heading over to the medical side of things (a short drive to another building). I was looking forward to hashing ideas out with Dr. Capone. We were in the waiting room for a bit until Miss M. caught up with us. I was surprised and disappointed when Miss M. mentioned that Dr. C was not there. He had a family emergency and had to go to Connecticut that morning. I was unhappy that she hadn't told me two hours earlier--she knew all along that he wasn't there. Grumph.
I was able to have a conference call with Dr. C, but it wasn't the same as him being there.
So here's the low down:
He has not received any reports of regression when ending a course of Rivastigmine.
He believes we could proceed safely with using Rivastigmine.
He did not really answer my question asking if he had any patients who have been on a long-term course of Rivastigmine.
He did not really answer my question asking if he had any patients who have been on a long-term course of Rivastigmine.
Possible long term side effects would not involve neurology, but instead would involve the same side effects they were watching for in the study: nausea, vomiting, eventually ulcers would be possible. These side effects have been reduced substantially by slowly weaning in the dosage (similar to what we did in the research trial). Side effects to this point (in the body of research) have been relatively limited.
If we decide to proceed with the medication (the official medication--they cannot reveal that Hannah did or did not receive it), we can add in the ginkgo to her supplements. Ginkgo addresses the excess GABA in the brain, but Rivastigmine works on the acetylcholine channels, so there should be no interaction between the two.
His last comment was "There is no question that uncertainty comes with the territory."
So, that left me with still not having any way to make a decision. James and I have to pray and ponder.
~~~~~~~~~~~~~~~~~~~~~~
It's amazing how quickly the time has passed. We started this drug trial in January, and now it's over. We started with it to advance the body of research in the Down syndrome population. Now we have to figure out if we want to make the decision to make this about benefiting (or, possibly, damaging) Hannah. Switching from a global perspective to a personal one is going to take some time for me. We have seen positive changes in Hannah's language and memory--larger gains than we have seen before. Should we stop now? Should we see where it leads? We want to provide Hannah with every opportunity to succeed. Is this an opportunity? Or a temptation?
~~~~~~~~~~~~~~~~~~~~~~~~~
If you're new to this thread, I encourage you to start at the beginning. If you have a child with Down syndrome, this research study may have implications for your child. Begin here.
~~~~~~~~~~~~~~~~~~~~~~
It's amazing how quickly the time has passed. We started this drug trial in January, and now it's over. We started with it to advance the body of research in the Down syndrome population. Now we have to figure out if we want to make the decision to make this about benefiting (or, possibly, damaging) Hannah. Switching from a global perspective to a personal one is going to take some time for me. We have seen positive changes in Hannah's language and memory--larger gains than we have seen before. Should we stop now? Should we see where it leads? We want to provide Hannah with every opportunity to succeed. Is this an opportunity? Or a temptation?
~~~~~~~~~~~~~~~~~~~~~~~~~
If you're new to this thread, I encourage you to start at the beginning. If you have a child with Down syndrome, this research study may have implications for your child. Begin here.
June 30, 2011
The end of the Research Study
We're heading back to Baltimore today. The final visit to Kennedy Krieger is on Friday. Hannah's got a long day of testing ahead of her (cognitive, medical). Fortunately she loves that stuff. I think it's because it's a novelty; she thinks it's fun. I never test her. I know exactly what she knows, since I'm with her so much, so I don't need to test her.
Our "field trips" this time are to visit Glen Echo, the home of Clara Barton. Hannah read the Magic Treehouse book about the Civil War and she's been interested in Clara Barton ever since. She's read a couple of simple biographies about her, so the next logical thing is to go see where she lived! It's just outside of Washington, DC, so hopefully we'll get there for the noon tour today. Then we'll head over to Annapolis to stay with a college friend of mine.
After the doctor's appointments hopefully we'll have time to head over to the Flag House. Hannah's music class is working on patriotic songs, so what better place to go than the place where the flag was made that inspired Francis Scott Key ? I remember taking the older kids to the Widow Pickersgill house--at Chris's request. He was about six years old (pre-Hannah), and was quite the little patriot. Since that time, the Pickersgill House has grown up and seems to be a nice small museum. We shall see! We won't make it to the Fort, since it's Friday afternoon---traffic traffic traffic!
James and I have been mulling over the options regarding continuing with the Rivastigmine medication. We both are leery of long-term medications, especially ones that don't have a track record. This medication has only been used in the Alzheimer's population--which is generally a population that is reaching the end of their lives. There is no information about how it could affect an adolescent. We also don't know if there will be any regression. Will she keep the gains she's made? If this medication is helping to clear out the amyloid plaques that have building up since she was born, how long will it take before they build up again? 13 years? How much experimentation are we willing to risk? (Answer: not a whole bunch)
I have many questions for Dr. Capone, and our pediatrician here. I wonder if it's a good idea to have her take it for 6 months on, 6 months off...I wonder if we should just drop it entirely... I don't think the doctors have answers to what I want to know.
I have a very dear friend who says, "What Would Beth Do?" when she has a problem with a kid or a spouse. She cracks me up. She only says that because she's so patient, gracious and merciful, whereas I am just straightforward, no-nonsense, tell-like-it-is. If I don't like it, you'll know it.
So, tell me, What would you do?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
To follow up with this post, click here.
Our "field trips" this time are to visit Glen Echo, the home of Clara Barton. Hannah read the Magic Treehouse book about the Civil War and she's been interested in Clara Barton ever since. She's read a couple of simple biographies about her, so the next logical thing is to go see where she lived! It's just outside of Washington, DC, so hopefully we'll get there for the noon tour today. Then we'll head over to Annapolis to stay with a college friend of mine.
After the doctor's appointments hopefully we'll have time to head over to the Flag House. Hannah's music class is working on patriotic songs, so what better place to go than the place where the flag was made that inspired Francis Scott Key ? I remember taking the older kids to the Widow Pickersgill house--at Chris's request. He was about six years old (pre-Hannah), and was quite the little patriot. Since that time, the Pickersgill House has grown up and seems to be a nice small museum. We shall see! We won't make it to the Fort, since it's Friday afternoon---traffic traffic traffic!
James and I have been mulling over the options regarding continuing with the Rivastigmine medication. We both are leery of long-term medications, especially ones that don't have a track record. This medication has only been used in the Alzheimer's population--which is generally a population that is reaching the end of their lives. There is no information about how it could affect an adolescent. We also don't know if there will be any regression. Will she keep the gains she's made? If this medication is helping to clear out the amyloid plaques that have building up since she was born, how long will it take before they build up again? 13 years? How much experimentation are we willing to risk? (Answer: not a whole bunch)
I have many questions for Dr. Capone, and our pediatrician here. I wonder if it's a good idea to have her take it for 6 months on, 6 months off...I wonder if we should just drop it entirely... I don't think the doctors have answers to what I want to know.
I have a very dear friend who says, "What Would Beth Do?" when she has a problem with a kid or a spouse. She cracks me up. She only says that because she's so patient, gracious and merciful, whereas I am just straightforward, no-nonsense, tell-like-it-is. If I don't like it, you'll know it.
So, tell me, What would you do?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
To follow up with this post, click here.
June 29, 2011
Elvis
Hannah is a big Elvis fan. I don't know how that happened. I do my best, but apparently, that wasn't good enough in this case. She's a rockabilly girl, and there's nothing I can do to change it.
Last weekend I noticed that there was a concert at our local State Park--Elvis Elvis ELVIS!!! There were three Elvises. One was a younger Elvis, the other was a 70s Elvis. And the third one was a 5 year old boy who was the nephew of the 70s Elvis. Both of them had sequined jumpsuits. Ummm. That's all I can say about that.
Hannah had a blast! She made friends with all the senior citizens. She bought a CD of the 50s Elvis impersonator. And she's been rockin' ever since.
Last weekend I noticed that there was a concert at our local State Park--Elvis Elvis ELVIS!!! There were three Elvises. One was a younger Elvis, the other was a 70s Elvis. And the third one was a 5 year old boy who was the nephew of the 70s Elvis. Both of them had sequined jumpsuits. Ummm. That's all I can say about that.
Hannah had a blast! She made friends with all the senior citizens. She bought a CD of the 50s Elvis impersonator. And she's been rockin' ever since.
June 18, 2011
Nan Talk
Hannah's been on a roll lately--lots of new language skills and showing us more and more memory tasks and understanding innuendo.
Two funny things today--one on purpose, the other, a slight misunderstanding:
1. Hannah was eating hard boiled eggs as part of her lunch. She had a little burp. She said, "Egg-cuse me."
2. Her computer was not behaving. She said, "I need that Mozzarella Firefox to come up."
Bonus: Her latest joke:
Q: What kind of suit does a duck wear?
A: A ducksedo!
Two funny things today--one on purpose, the other, a slight misunderstanding:
1. Hannah was eating hard boiled eggs as part of her lunch. She had a little burp. She said, "Egg-cuse me."
2. Her computer was not behaving. She said, "I need that Mozzarella Firefox to come up."
Bonus: Her latest joke:
Q: What kind of suit does a duck wear?
A: A ducksedo!
June 14, 2011
Odds and Ends
Wow. I guess I totally haven't been writing anything lately, have I? I was supposed to write a couple of posts while we were on vacation. I actually wrote some of one of them, but it was so boring that I dumped it and thought I'd start fresh. But I didn't. Yet.
And nary a beach photo did I share. Humph, you say, and rightly so. I shall at least remedy some of your suffering.
Hoping for a prince!
Vacation disappears so quickly! We've been home for a little over a week, and we've already forgotten those sandy toes and seagulls.
We arrived home to eager doggies. Hazel had an odd tumor removed from her leg a couple weeks before our trip (benign!). She had a long recovery, and she finally was cleared by the vet just before we came home. Our great house/pet sitter kept her happy and safe.
This past Friday was Hannah's piano recital. I still have to download the video, so that will be another post.
Kate is down to six months left in the Peace Corps! My parents are treating her to an escape vacation to Greece. The three of them are there right now! They've done Athens, and are currently in Thessaloniki. Next up (Kate's choice): Naxos!
James surprised Hannah with tickets to go see the Imagination Movers (yes, she still does enjoy preschool music, which, in my worldview, is preferable to most of what other 13 year girls are listening to). She has a crush on Rich.
Just yesterday, Hannah finally braved sliding down the fire pole at the playground! When she was little she had a bit of an accident on one, and she's had a love/hate relationship with it since. Not anymore!
Today, we said goodbye to that long hair. She had 6 inches cut off, and she's loving it!
My personal news of the week is that I was diagnosed with Lyme Disease. I don't have many symptoms, so hopefully the medication will knock out what I do have. When I'm better I might have to have a Mojito party--limes for the Lymey!
And nary a beach photo did I share. Humph, you say, and rightly so. I shall at least remedy some of your suffering.
Annual Dairy Queen ritual....
This is actually Chris...
Team Pirate, performing during our Scaventure game!
Hoping for a prince!
Shirley Temple with FOUR cherries!
Baby nurse shark--the fisherman let Hannah throw it back into the water. Pretty cool.
Mmmm. That's North Carolina for you!
Shea (Hannah's BFF) was very creative with the nail polish!
My BFF, Roxanne
Vacation disappears so quickly! We've been home for a little over a week, and we've already forgotten those sandy toes and seagulls.
We arrived home to eager doggies. Hazel had an odd tumor removed from her leg a couple weeks before our trip (benign!). She had a long recovery, and she finally was cleared by the vet just before we came home. Our great house/pet sitter kept her happy and safe.
This past Friday was Hannah's piano recital. I still have to download the video, so that will be another post.
Kate is down to six months left in the Peace Corps! My parents are treating her to an escape vacation to Greece. The three of them are there right now! They've done Athens, and are currently in Thessaloniki. Next up (Kate's choice): Naxos!
James surprised Hannah with tickets to go see the Imagination Movers (yes, she still does enjoy preschool music, which, in my worldview, is preferable to most of what other 13 year girls are listening to). She has a crush on Rich.
He actually noticed the sign and he winked at her!
And Smitty gave her a High-5!
Just yesterday, Hannah finally braved sliding down the fire pole at the playground! When she was little she had a bit of an accident on one, and she's had a love/hate relationship with it since. Not anymore!
Today, we said goodbye to that long hair. She had 6 inches cut off, and she's loving it!
My personal news of the week is that I was diagnosed with Lyme Disease. I don't have many symptoms, so hopefully the medication will knock out what I do have. When I'm better I might have to have a Mojito party--limes for the Lymey!
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