We did our meeting on Friday, and we basically re-hashed what we already knew. She does have ovaries, one has six follicles, and they are working, but they are working as hard as they can and they don't seem to be making enough estrogen to get puberty off to the running start most girls get. Dr. Bondy recommended we wait another 6 months to a year to begin estrogen, and she thinks we can get Madison to 5'1".
We also found out that Madison has an aberrant subclavian artery, and we were told not to give it a second thought.
The cardiologists at the NIH felt that her aortic root was normal, not mildly dilated as we had thought before. This is good news.
Monday, June 28, 2010
Thursday, June 24, 2010
Day 5, Even more out of the NIH
This morning Madison had her glucose tolerance test. As soon as that was over and she got to remove her blood pressure buddy, we headed out to DC.
Our first stop was the Smithsonian Castle, which is just the info center for all the Smithsonian museums. We picked up our new member welcome packet because they persuaded me to join at the Air and Space gift shop. The welcome packet is a map.
Then we headed to the Washington Monoment, where timed tickets for entry are free but limited. We arrived at about 1:00, the tickets were "sold out" at 7:30. So we stood back and admired the monument and headed to the White House.
The walk to the White House was long and hot. We stopped a few times to rest and we had a little bit of a breakdown, with Madison whining about the heat and me sick of hearing the whining. Eventually we got as close as we were able to get to the White House, and we took a picture or two before we heaed to the White House Visitor Center which is loceated in the nearby Commerce building.
The Visitor Center is actually quite nice, much more museum than gift shop. In fact, I don't recall that there were any souvenirs for sale at all. We watched a nice film and enjoyed the AC.
Then we walked a couple blocks back to the capitol mall. I should say that Washingon DC blocks are about three blocks long.
We had an asian dinner at the Smithsonian World Culture Festival, or something like that. Then we walked to the other side of the mall to the Museum of Natural History.
We saw the Hope diamond, which is nice, but it wasn't even close to the most impressive gem in the room. The gem and minerals exhibit was really neat. We also saw the Mammals exhibit, Early Civilizations, Human Ancestors where we got our pictures taken to see how we would look as Neandethals, Oceans, and Bones.
Then we went to the gift shop, because that is madison's favorite part- even though I told her that there wouldn't be souvenirs. She just likes to read the books, I think. Anyway, as we browsed, I saw on a table of jewelry and books a I am Not a Paper Cup, not in a box, a little dirty. I picked it uip and inspected it- no price tag on the bottom and although it was empty, I could tell it hadn't always been. This was a Lost Cup. But not for long. It is now a Found Cup.
Tomorrow we get the results of all her tests and the big picture. All her doctors will come to her room and we will have a big conference. We are considering going back to Washington, but it is sort of a hassle to leave the hospital and also, we are very, very sore.
I miss home and I am ready to be done here.
Our first stop was the Smithsonian Castle, which is just the info center for all the Smithsonian museums. We picked up our new member welcome packet because they persuaded me to join at the Air and Space gift shop. The welcome packet is a map.
Then we headed to the Washington Monoment, where timed tickets for entry are free but limited. We arrived at about 1:00, the tickets were "sold out" at 7:30. So we stood back and admired the monument and headed to the White House.
The walk to the White House was long and hot. We stopped a few times to rest and we had a little bit of a breakdown, with Madison whining about the heat and me sick of hearing the whining. Eventually we got as close as we were able to get to the White House, and we took a picture or two before we heaed to the White House Visitor Center which is loceated in the nearby Commerce building.
The Visitor Center is actually quite nice, much more museum than gift shop. In fact, I don't recall that there were any souvenirs for sale at all. We watched a nice film and enjoyed the AC.
Then we walked a couple blocks back to the capitol mall. I should say that Washingon DC blocks are about three blocks long.
We had an asian dinner at the Smithsonian World Culture Festival, or something like that. Then we walked to the other side of the mall to the Museum of Natural History.
We saw the Hope diamond, which is nice, but it wasn't even close to the most impressive gem in the room. The gem and minerals exhibit was really neat. We also saw the Mammals exhibit, Early Civilizations, Human Ancestors where we got our pictures taken to see how we would look as Neandethals, Oceans, and Bones.
Then we went to the gift shop, because that is madison's favorite part- even though I told her that there wouldn't be souvenirs. She just likes to read the books, I think. Anyway, as we browsed, I saw on a table of jewelry and books a I am Not a Paper Cup, not in a box, a little dirty. I picked it uip and inspected it- no price tag on the bottom and although it was empty, I could tell it hadn't always been. This was a Lost Cup. But not for long. It is now a Found Cup.
Tomorrow we get the results of all her tests and the big picture. All her doctors will come to her room and we will have a big conference. We are considering going back to Washington, but it is sort of a hassle to leave the hospital and also, we are very, very sore.
I miss home and I am ready to be done here.
Wednesday, June 23, 2010
Day 4, mostly out of the NIH
This morning, Madison's space cadet nurse rushed in at 7:15 to remind us that she had an MRI at 8. It's a good thing she did, I would have slept right through it. We went to the cardiac MRI center. We walked past the "Mouse MRI" room and the "Animal MRI" room. The cardiac MRI took place in a different building than her abdominal MRI.
I stayed behind the lead wall with the radiologist and the tech. After about 30 minutes, another lady walked in our room and asked how much longer Madison's exam was going to be. Our tech told her about 10 minutes, and asked why.
"I need that coil for a pig".
Then she got fitted with her 24 hour blood pressure monitor, which is just a cuff attached to a small machine that she wears around her waist. It takes her blood pressure every half hour while she is awake and every hour wheile asleep.
She also went for an audiology exam today, where it was determined that she can't hear for shit, which I could have told them. She had pneumonia a couple weeks ago with a concommitant ear infection. In fact, she had a blister on one of her eardrums. She has finished her course of antibiotics, and although she is no longer complaining of pain, the blister remains. And sincer her ears are all jacked up, she is deaf as can be, but in a weird way. She can hear almost everything fine except background noise, and she talks very quietly. For example... we were standing about 20 feet from a fast moving train and she was talking to me in her regular voice and couldnt' understand why I couldn't hear her.
So when we get home we have to get her ears addressed.
But after that, we went to Washington DC! We rode the subway, which was exciting because everything moves so fast and no one wants to look like some Oregon rube who can't figure out the fare machine. But I was rubey.
We rode the Metro to the capital mall. I was surprised that the grass is splotchy and patchy, not lush and green. We went to the capital to take a tour. The walk was about 3/4 mile, and it was about 100 degrees and HUMID, so we were both hating life. In fact, by the time we got onto the capital grounds, I asked a golf cart driver to take us to the visitor's entrance. She had the machine on, she sorta looked disabled. Plus she's deaf.
Once we were delivered to the entrance, we had to go through security. Madison set off the metal detector with her monitor and was afraid she would have to take it off, but the guards were very nice about it. They weren't so nice about the empty water bottles I had in my bag. I had to take them outside and i was told to throw them away, in the trash. One of them was a giveaway from a radiology joint back home, but one was a pretty nice, new stainless one and I did not want to throw it away. So I asked a couple of guys in red Visitor Services vests if they wouldn't mind watching them if I jsut set them in the grass. They explained that the capitol police and the secret service frown on unattended stainless steel tubes and if I put them down the whole capital would have to close. They told me to put them in the special trash marked "water bottles" because that trash doesn't get empties as often, and maybe the bottles would be there when we got back.
So I did it. Then back through security I went. With scissors in my bag.
So out to the trash again.... this time I tried to balance my scissors on the edge of the can, under the outer box, so that I could maybe reach in and grab my scissors when we were done with the tour.
Then back through security I went.
I made it! And we were super lucky to catch the last tour of the day. We weren't able to see the House or Senate floors. Those areas are open to the public, but only with a pass issued by your member of congress, which can take up to 24 hours. Madison and I both enjoyed the tour quite a lot.
The we walked to the Smithsonian Air and Space Museum, where we saw all kinds of air and space artifacts. Madison bought souvenir Air Force wings. The museum was really impressive, we spent about 2 hours there and we only skimmed the surface.
Did you know all the Smithsonian museums are free? Pretty awesome, I think.
We also got some results today, Madison's bone density is not super, so more calcium and vitamin D for her.
Tomorrow is the last test, the glucose tolerance test. Then we will go back to Washington and see the White House visitors center, the Smithsonian Museum of Natural History and the Washington Monument.
I stayed behind the lead wall with the radiologist and the tech. After about 30 minutes, another lady walked in our room and asked how much longer Madison's exam was going to be. Our tech told her about 10 minutes, and asked why.
"I need that coil for a pig".
Then she got fitted with her 24 hour blood pressure monitor, which is just a cuff attached to a small machine that she wears around her waist. It takes her blood pressure every half hour while she is awake and every hour wheile asleep.
She also went for an audiology exam today, where it was determined that she can't hear for shit, which I could have told them. She had pneumonia a couple weeks ago with a concommitant ear infection. In fact, she had a blister on one of her eardrums. She has finished her course of antibiotics, and although she is no longer complaining of pain, the blister remains. And sincer her ears are all jacked up, she is deaf as can be, but in a weird way. She can hear almost everything fine except background noise, and she talks very quietly. For example... we were standing about 20 feet from a fast moving train and she was talking to me in her regular voice and couldnt' understand why I couldn't hear her.
So when we get home we have to get her ears addressed.
But after that, we went to Washington DC! We rode the subway, which was exciting because everything moves so fast and no one wants to look like some Oregon rube who can't figure out the fare machine. But I was rubey.
We rode the Metro to the capital mall. I was surprised that the grass is splotchy and patchy, not lush and green. We went to the capital to take a tour. The walk was about 3/4 mile, and it was about 100 degrees and HUMID, so we were both hating life. In fact, by the time we got onto the capital grounds, I asked a golf cart driver to take us to the visitor's entrance. She had the machine on, she sorta looked disabled. Plus she's deaf.
Once we were delivered to the entrance, we had to go through security. Madison set off the metal detector with her monitor and was afraid she would have to take it off, but the guards were very nice about it. They weren't so nice about the empty water bottles I had in my bag. I had to take them outside and i was told to throw them away, in the trash. One of them was a giveaway from a radiology joint back home, but one was a pretty nice, new stainless one and I did not want to throw it away. So I asked a couple of guys in red Visitor Services vests if they wouldn't mind watching them if I jsut set them in the grass. They explained that the capitol police and the secret service frown on unattended stainless steel tubes and if I put them down the whole capital would have to close. They told me to put them in the special trash marked "water bottles" because that trash doesn't get empties as often, and maybe the bottles would be there when we got back.
So I did it. Then back through security I went. With scissors in my bag.
So out to the trash again.... this time I tried to balance my scissors on the edge of the can, under the outer box, so that I could maybe reach in and grab my scissors when we were done with the tour.
Then back through security I went.
I made it! And we were super lucky to catch the last tour of the day. We weren't able to see the House or Senate floors. Those areas are open to the public, but only with a pass issued by your member of congress, which can take up to 24 hours. Madison and I both enjoyed the tour quite a lot.
The we walked to the Smithsonian Air and Space Museum, where we saw all kinds of air and space artifacts. Madison bought souvenir Air Force wings. The museum was really impressive, we spent about 2 hours there and we only skimmed the surface.
Did you know all the Smithsonian museums are free? Pretty awesome, I think.
We also got some results today, Madison's bone density is not super, so more calcium and vitamin D for her.
Tomorrow is the last test, the glucose tolerance test. Then we will go back to Washington and see the White House visitors center, the Smithsonian Museum of Natural History and the Washington Monument.
Tuesday, June 22, 2010
Day 3 at the NIH
Last night I finally got some rest and today I feel much better about life in general. The staff all ask if we are staying at the hospital or at the Children's inn, and when I tell them we are staying here, they all look at me with such sympathy as they turn their eyes to the small sofa I have to sleep on. The truth is, it isn't too bad. Plus, I'm a good sleeper. I took a picture of it, I will try to post it when I get home.
Now then, onto the important news of the day.
Madison's day began with an ultrasound of her kidneys, liver and uterus. We already knew that she has two normal kidneys and that her liver looks good, but we have never had her uterus or ovaries imaged. Many girls with TS do not have ovaries, or have "streaks" of ovarian tissue.
Madison's ultrasound tech said that she saw two ovaries.
But. we don't know exactly what that means.
Her endocrinlogist came with some lab results. Her estrogen level is 61 and there is evidence that madison's pituitary gland is sending signals to her ovaries to produce more estrogen to start puberty, so I am led to believe that Madison's ovaries aren't working as well as they could be. We will have all the answers on Friday at our conference when we talk to Dr. Bondy.
We had a long visit with the dietician, because Madison's triglycerides are 220, they should be less than 150. Her LDL is 40and her HDL is 99, which are within normal limits although the HDL is on the high end of normal. We talked about adding more whole grains and vegetables and limiting refined sugars. Madison is excited to go fishing and catch dinner. One thing that made me happy was that the dietician recommended that Madison avoid "diet" foods in favor of naturally occuring foods that may be higher in sugar or fat.
We then had an occuaptional therapy eval, which was pretty quick since Madison seems to be pretty good at things like grooming and cooking and cleaning. Well, at least she is capable of being pretty good at those things...
Next was a nice visit with a vocational therapist who talked to Madison about friends, school, and possible future careers. She also told me that I was doing a good job letting Madison speak for herself and she thought we had a very nice relationship. It was nice to hear. She said I wasn't too hover-y.
The therapists asked a lot of questions and I will be interested to see their reports. They both said that they thought Madison was well-rounded, well-adjusted and didn't seem to have many of the problems that can be typical of TS.
Tomorrow, cardiac MRI and 24 hour BP monitoring begins. We will have an afternoon free so we may go into Washington DC, depending on what type of equipment 24 hour BP monitoring entails.
And today is the Feast of St Peter Fisher and St Thomas Moore.
Now then, onto the important news of the day.
Madison's day began with an ultrasound of her kidneys, liver and uterus. We already knew that she has two normal kidneys and that her liver looks good, but we have never had her uterus or ovaries imaged. Many girls with TS do not have ovaries, or have "streaks" of ovarian tissue.
Madison's ultrasound tech said that she saw two ovaries.
But. we don't know exactly what that means.
Her endocrinlogist came with some lab results. Her estrogen level is 61 and there is evidence that madison's pituitary gland is sending signals to her ovaries to produce more estrogen to start puberty, so I am led to believe that Madison's ovaries aren't working as well as they could be. We will have all the answers on Friday at our conference when we talk to Dr. Bondy.
We had a long visit with the dietician, because Madison's triglycerides are 220, they should be less than 150. Her LDL is 40and her HDL is 99, which are within normal limits although the HDL is on the high end of normal. We talked about adding more whole grains and vegetables and limiting refined sugars. Madison is excited to go fishing and catch dinner. One thing that made me happy was that the dietician recommended that Madison avoid "diet" foods in favor of naturally occuring foods that may be higher in sugar or fat.
We then had an occuaptional therapy eval, which was pretty quick since Madison seems to be pretty good at things like grooming and cooking and cleaning. Well, at least she is capable of being pretty good at those things...
Next was a nice visit with a vocational therapist who talked to Madison about friends, school, and possible future careers. She also told me that I was doing a good job letting Madison speak for herself and she thought we had a very nice relationship. It was nice to hear. She said I wasn't too hover-y.
The therapists asked a lot of questions and I will be interested to see their reports. They both said that they thought Madison was well-rounded, well-adjusted and didn't seem to have many of the problems that can be typical of TS.
Tomorrow, cardiac MRI and 24 hour BP monitoring begins. We will have an afternoon free so we may go into Washington DC, depending on what type of equipment 24 hour BP monitoring entails.
And today is the Feast of St Peter Fisher and St Thomas Moore.
Monday, June 21, 2010
NIH visit day 2- the longest day ever
Today the time change caught up with me or something. What a whirlwind day.
Before anything invasive happened, we had to meet the head of the study and sign consent forms. Dr. Bakalov showed up early, about 7:00.
Then the phlebotomists came and took 17 vials of Madison's blood. She had about 4 bites of her breakfast, and then our escort came to take us to her Dexa scan, which was a bit of a test of lying still for Madison. We returned to our room for about 20 minutes and then we were escorted to her first MRI, of her abdomen. The tech was really great- everyone here has been really great. Evfen though the MRI machine was really loud, Madison almost fell asleep wrapped in her heated blanket.
After the MRI, we returned to the room and ordered lunch. The pediatric endocrinologist, who is Madison's attending physician, came to meet us and do a thorough history and physical. She was delightful, her name was Dr. Emirick. Then we had a visit from Dr. Bondy, who thankfully just stopped to say hello and check in. She is Dr. Bakalov's partner in the study, and the nation's top Turner Syndrome researcher. We will have more time to visit with her later in the week.
Then the chaplain stopped by because I told the fellow at admissions that Madison is Catholic. Did you know today is the Feast of St. Eu.....something or other?
The next entry in the parade was the first cardiologist we met, who also did a complete h&p. She listened to Madison's lungs and heart and took four blood pressures, one in each extremity.
Then we were sent for an echocardiogram and EKG. We were supposed to get a bone age x-ray but we forgot so I guess we get to do that tomorrow, along with ultrasounds , occupational therapy and vocational therapy. I hope to know the difference between the two tomorrow.
Before anything invasive happened, we had to meet the head of the study and sign consent forms. Dr. Bakalov showed up early, about 7:00.
Then the phlebotomists came and took 17 vials of Madison's blood. She had about 4 bites of her breakfast, and then our escort came to take us to her Dexa scan, which was a bit of a test of lying still for Madison. We returned to our room for about 20 minutes and then we were escorted to her first MRI, of her abdomen. The tech was really great- everyone here has been really great. Evfen though the MRI machine was really loud, Madison almost fell asleep wrapped in her heated blanket.
After the MRI, we returned to the room and ordered lunch. The pediatric endocrinologist, who is Madison's attending physician, came to meet us and do a thorough history and physical. She was delightful, her name was Dr. Emirick. Then we had a visit from Dr. Bondy, who thankfully just stopped to say hello and check in. She is Dr. Bakalov's partner in the study, and the nation's top Turner Syndrome researcher. We will have more time to visit with her later in the week.
Then the chaplain stopped by because I told the fellow at admissions that Madison is Catholic. Did you know today is the Feast of St. Eu.....something or other?
The next entry in the parade was the first cardiologist we met, who also did a complete h&p. She listened to Madison's lungs and heart and took four blood pressures, one in each extremity.
Then we were sent for an echocardiogram and EKG. We were supposed to get a bone age x-ray but we forgot so I guess we get to do that tomorrow, along with ultrasounds , occupational therapy and vocational therapy. I hope to know the difference between the two tomorrow.
Sunday, June 20, 2010
Our trip to the NIH, day 1
This morning we left the house at about 5:45 to catch our flight from Portland to Chicago. This was Madison's first flight.
Everything at the airport went well, we got right through security even though I was packing scissors (the TSA website says it's okay) and Madison was bringing syringes aboard.
Our flight was packed. A pretty single girl sat next to us, she must have been drugged because she fell asleep almost right away. I felt bad that I had to disturb her twice to get up to pee.
Madison was really thrilled by the whole process of flight, and I enjoyed being a part of that. She said it was like "real-life Google Earth".
We had McDonald's at Chicago during our two hour layover.
Our flight from Chicago to Baltimore was delated a little, we sat on the runway while the crwe tried to figure out a ventialtion problem in the cockpit. I guess they got it squared away because we eventually took off, about 10 minutes late. It was a nice, short flight, and I was surprised to see wind farms in the hills.
We rushed to catch the shuttle to the NIH. We were the only passengers on a 15 passenger van.
I must say that what I've seen of New England is gorgeous. All the trees have leaves, and they are shorter than Northwest trees, but they are abundant.
Curiously, I only saw one Subaru on the freeway. Don't they have lesbians here?
We arrived at the hospital, and even though we were on the NIH shuttle, we had to disembark the bus at a security checkpoint. Guards boarded the bus and inspected, and looked underneath for bombs. We had to go through a metal detector and then they ran my name and ID through some computer. Made Madison and I wonder what kind of stuff goes on here....
At about 9 pm, we made our way to admitting and then finally to our room. It is a room for two patients but tonight we are all alone, and I have been told we won't have to share but I am not counting on it.
There is a little sofa for me to sleep on, Madison is really enjoying her adjustable hospital bed.
Tomorrow we have:
pregnancy test
Dexa Scan
MRI abdomen
Cardiology consult.... which to me is weird because she has a cardio MRI scheduled for Wednesday.
echocardiogram
Then I guess we have the afternoon free so maybe we will get to see some sights.
Everything at the airport went well, we got right through security even though I was packing scissors (the TSA website says it's okay) and Madison was bringing syringes aboard.
Our flight was packed. A pretty single girl sat next to us, she must have been drugged because she fell asleep almost right away. I felt bad that I had to disturb her twice to get up to pee.
Madison was really thrilled by the whole process of flight, and I enjoyed being a part of that. She said it was like "real-life Google Earth".
We had McDonald's at Chicago during our two hour layover.
Our flight from Chicago to Baltimore was delated a little, we sat on the runway while the crwe tried to figure out a ventialtion problem in the cockpit. I guess they got it squared away because we eventually took off, about 10 minutes late. It was a nice, short flight, and I was surprised to see wind farms in the hills.
We rushed to catch the shuttle to the NIH. We were the only passengers on a 15 passenger van.
I must say that what I've seen of New England is gorgeous. All the trees have leaves, and they are shorter than Northwest trees, but they are abundant.
Curiously, I only saw one Subaru on the freeway. Don't they have lesbians here?
We arrived at the hospital, and even though we were on the NIH shuttle, we had to disembark the bus at a security checkpoint. Guards boarded the bus and inspected, and looked underneath for bombs. We had to go through a metal detector and then they ran my name and ID through some computer. Made Madison and I wonder what kind of stuff goes on here....
At about 9 pm, we made our way to admitting and then finally to our room. It is a room for two patients but tonight we are all alone, and I have been told we won't have to share but I am not counting on it.
There is a little sofa for me to sleep on, Madison is really enjoying her adjustable hospital bed.
Tomorrow we have:
pregnancy test
Dexa Scan
MRI abdomen
Cardiology consult.... which to me is weird because she has a cardio MRI scheduled for Wednesday.
echocardiogram
Then I guess we have the afternoon free so maybe we will get to see some sights.
Subscribe to:
Posts (Atom)