Charlotte woke up bright and early this morning and we watched the sunrise through our window. It was pretty nice but already very hot so no chance of early morning playground activity.
A needs request: The Ronald McDonald House here is in need of fold-down, plastic, wall-mounted, Koala brand or similar diaper changing tables in at least the two downstairs bathrooms. All they have is a dresser in the hallway between the two that they call a diaper changing table but it has no rim or safety strap or anything. It's just a dresser.
I can probably install them myself and with my dad coming, I think I could probably enlist his help with that. If anyone knows of a company somewhere in the Houston area that supplies that sort of thing and would like to donate two, please let me know. I'll also work on it from this end.
Back to our story...After a while we went downstairs for applesauce and chocolate milk. We got a call from a friend of a friend who works at the Houston Museum of Natural Science and he offered to hook us up with some passes! HECK YEAH!
The Beazleys let me use their truck while they are out of town so I took the opportunity to head over to a nearby Target and spend some of the gift cards we've been given. some fresh books and videos for CJ and a new of cheap sunglasses for me since I can't find the ones I brought with me. I do that a lot. That's why I buy cheap ones.
Then it was off to the museum. (I'm getting to know my way around town pretty well!)
The museum was very cool and we got to see dinosaurs, a mammoth (maybe a mastodon - not sure), a giant sloth that makes the one in Daytona Beach look puny, animal displays that reminded me disturbingly of Night At The Museum, the very cool Terra Cotta Warriors, and the coolest of all, the butterfies. There were some amazing butterflies in there.
Charlotte pooped out before we could get to the Diamond display but she, surprizingly, liked the Terra Cotta Warriors mostly because of the horses they had. She also found the concept of someone made up like one of the statues and scaring the crap out of people as they walked by very amusing.
When we came back to The House, there was food being served by yet another organization and I chowed while she played in the toyroom. She's eating a little so I'm not hyper concerned but it ain't much. Applesauce, some dry cheerios, and she's drinking plenty. Stop obsessing Roger.
We came back to the room with our new found treasures and after a little Dora, she was out. For three hours.
We have most of the flights back and forth set with
Update:
Not sure what was up with the partial journal post. Must have gotten distracted. (Who, me???)
All I was going to say was that we got most of the flights booked with ride requests in to the Houston Ground Angels.
I wanted to let you know that it's now 11:45pm Houston time and Charlotte barely turned over to go to sleep 15 minutes ago! 3-hour naps will do that to ya. So she'll sleep in maybe.
I also wanted to share another story. A family of 4 daughters and their parents, the mother expecting her 5th(!) a boy this time, came to The House the day before us and we've been passing pleasantries and watching out for each other's kids and all that but tonight I finally met them.
The boy, Connor, is the patient! He has a blocked bladder and they have been perfoming surgeries (3 now) in utero to place shunts to help drain the bladder. Connor keeps pulling them out. Mom said the last sonogram was a pic of Connor with his eyes open, toungue sticking out, and the end of the tube dangling defiantly in his hand. I told her I want a copy of that one!
Showing posts with label Houston Ground Angels. Show all posts
Showing posts with label Houston Ground Angels. Show all posts
Saturday, July 18, 2009
Tuesday, July 14, 2009
An Update from Houston
Let's settle in for a nice long one, shall we?
I'll try to get this done by midnight.
The day started off pretty good with Rachel getting off at a decent time (thanks to Robert and the Houston Ground Angels for the lift to the airport). I understand she upgraded to business class. The ticket agent offhandedly quipped, "you deserve it." and Rachel said, "You have no idea!" You got that right!
After that, I got to get ready at a leisurely pace since our first appointment wasn't until 10:15am. I woke up Charlotte, got her ready, and we walked over to MD Anderson to start our day.
The first appointment was a chest x-ray on the 3rd floor by Elevator 7 (the world of MD Anderson revolves around what elevator your appointment is near). We got there super early and I expected to wait a very long time but I guess they didn't have all that much to do and they got us right in.
The only drama was when CJ saw the actual x-ray equipment. She's had x-rays before but this looked a little more intimidating than the other times and she started getting scared but she's smart and after I explained what was going to happen and how I PROMISED it wasn't going to hurt, she was game. They actually made her stand, which was a new one, and she did whatever the x-ray technician told her to. I got to wear this big o' lead-lined glove to both protect her lower back from the x-rays and my arm from frying while I helped hold her in place. She thought is was funny.
BTW, she has started picking up the phrase, "big o' (whatever)." She used it twice today. Sometimes she adds "hairy" to it like I do once in a while: "Charlotte, you've got a big o' hairy stinky diaper!"
But I digress
So the chest x-ray was pretty easy, early, and painless so then we tooled over to Elevator C 7th floor which is the Peds clinic where we went before to see Dr. Wolfe. We wew actually slated to go to teh second floor but they re-reouted us to the 7th floor because that's where we were supposed to be anyway. The 2nd floor is for adults.
The place was hoppin. The playroom was full of kids, the music therapist was there and he had the kids wrapped around his finger. I was a little soso on him the first time but he was jammin' today. The child life specialist from last time was there too and she remembered us, remembered where we were from, and even some little details about Charlotte's favorite things. That always impresses the hell out of me.
This segment of the day went well too. Miss/Nurse Toni drew the blood, gave CJ a little Snoopy dog (she got a "Fleece" Beanie Baby before the chest x-ray and a platypus Beanie Baby at the Proton Center yesterday!), and we headed back to the "Imaging Center" for the scheduled MRI/assessment starting at 11:30.
Now things started slowing down. It seems there was a problem with one of the machines so they were running behind. Remember that Charlotte was NPO for the second time in as many days. No food all morning and it was getting to be noon-y. Never once did she complain. We read books, watched Sid The Science Kid and Blues Clues videos until the battery in the DVD player petered out. and talked to a couple other patients there. I think the batteries petering out scared them into doing something for us so they at least let us go in the back to wait. I plugged in the DVD player in the back and we finished the Blues Clues that got interrupted out front.
Then before you know it, it was our turn. We went into the MRI room, CJ was holding on pretty tightly but not really freaking out. Again, I told her what was going to happen and it helped, I think. She got the goofey juice, she conked out and I got the next 45 minutes to myself. I went and got lunch!
The time was just after 2pm. It was supposed to start at 12noon. And the MRI lab was pretty chaotic because other doctors were trying to cram other patients in an already full dockett. Like at the Proton Clinic, CJ slept far longer than normal and this time, they had her hooked up to saline for fluids, and by the time I changed her diaper, it was a big o' hairy saturated diaper!
Well my eyes are fighting me so I'll try to finish this tomorrow.
Buenos noches and adios amoebas!
Rog
I'll try to get this done by midnight.
The day started off pretty good with Rachel getting off at a decent time (thanks to Robert and the Houston Ground Angels for the lift to the airport). I understand she upgraded to business class. The ticket agent offhandedly quipped, "you deserve it." and Rachel said, "You have no idea!" You got that right!
After that, I got to get ready at a leisurely pace since our first appointment wasn't until 10:15am. I woke up Charlotte, got her ready, and we walked over to MD Anderson to start our day.
The first appointment was a chest x-ray on the 3rd floor by Elevator 7 (the world of MD Anderson revolves around what elevator your appointment is near). We got there super early and I expected to wait a very long time but I guess they didn't have all that much to do and they got us right in.
The only drama was when CJ saw the actual x-ray equipment. She's had x-rays before but this looked a little more intimidating than the other times and she started getting scared but she's smart and after I explained what was going to happen and how I PROMISED it wasn't going to hurt, she was game. They actually made her stand, which was a new one, and she did whatever the x-ray technician told her to. I got to wear this big o' lead-lined glove to both protect her lower back from the x-rays and my arm from frying while I helped hold her in place. She thought is was funny.
BTW, she has started picking up the phrase, "big o' (whatever)." She used it twice today. Sometimes she adds "hairy" to it like I do once in a while: "Charlotte, you've got a big o' hairy stinky diaper!"
But I digress
So the chest x-ray was pretty easy, early, and painless so then we tooled over to Elevator C 7th floor which is the Peds clinic where we went before to see Dr. Wolfe. We wew actually slated to go to teh second floor but they re-reouted us to the 7th floor because that's where we were supposed to be anyway. The 2nd floor is for adults.
The place was hoppin. The playroom was full of kids, the music therapist was there and he had the kids wrapped around his finger. I was a little soso on him the first time but he was jammin' today. The child life specialist from last time was there too and she remembered us, remembered where we were from, and even some little details about Charlotte's favorite things. That always impresses the hell out of me.
This segment of the day went well too. Miss/Nurse Toni drew the blood, gave CJ a little Snoopy dog (she got a "Fleece" Beanie Baby before the chest x-ray and a platypus Beanie Baby at the Proton Center yesterday!), and we headed back to the "Imaging Center" for the scheduled MRI/assessment starting at 11:30.
Now things started slowing down. It seems there was a problem with one of the machines so they were running behind. Remember that Charlotte was NPO for the second time in as many days. No food all morning and it was getting to be noon-y. Never once did she complain. We read books, watched Sid The Science Kid and Blues Clues videos until the battery in the DVD player petered out. and talked to a couple other patients there. I think the batteries petering out scared them into doing something for us so they at least let us go in the back to wait. I plugged in the DVD player in the back and we finished the Blues Clues that got interrupted out front.
Then before you know it, it was our turn. We went into the MRI room, CJ was holding on pretty tightly but not really freaking out. Again, I told her what was going to happen and it helped, I think. She got the goofey juice, she conked out and I got the next 45 minutes to myself. I went and got lunch!
The time was just after 2pm. It was supposed to start at 12noon. And the MRI lab was pretty chaotic because other doctors were trying to cram other patients in an already full dockett. Like at the Proton Clinic, CJ slept far longer than normal and this time, they had her hooked up to saline for fluids, and by the time I changed her diaper, it was a big o' hairy saturated diaper!
Well my eyes are fighting me so I'll try to finish this tomorrow.
Buenos noches and adios amoebas!
Rog
Thursday, July 2, 2009
Planning to go to MD Anderson in Houston
Not a lot of new news except that Charlotte's numbers seem to be improving rather than tanking like they were supposed to. She is just amazing!
She's been taking her icky medicine with a minimum of fuss. We've developed the technique of giving her a little bit of meds, then a little piece of chocolate, then more meds, then chocolate, and so on. Before she knows it, the icky stuff is gone and all that's left is the good (relatively) tasting medicine.
She had a pretty mellow day watching a video or two, playing with the shoelaces from my running shoes, and opening a box of birthday presants that came from Clampitville (Aunt B and Uncle Hairy). Very nice gifts folks even though we expressly said, "NO PRESANTS!" this year since she's got so much stuff already and has been getting presants almost constantly since "The Crap" began.
Speaking of Aunt B an' 'em, We got to chat with them via the Hopecam all the way from Hawaii. We (or rather "I") also chatted with the Prices for a short bit as well. CJ wasn't all that interested.
Right now, she's over at Uncle Kolbey's threading frog beads onto a string. She's getting really good at that again.
Rachel has been doing most of the work today, taking Charlotte into the clinic and then going in to Romp n' Roll for the afternoon/evening shift. I get to work hard tomorrow.
I took advantage of my free 90-minute massage today at Massage Envy. I was quite the noodle afterwards. I might get a membership because I really want that once a month! :-)
So...what the heck is on the horizon? We are almost assuredly going to MD Anderson in Houston for the proton beam radiation. We're still not 100% sure when we're going, or how we're going to get there, or where we're going to stay but there are sure a lot of resources out there of which we could take advantage. Thanks to all of you for forwarding those resources to us, especially Deb Price (Nile's mom).
There's a strong possibility we will have to postpone Charlotte's birthday party. Very disappointing but CJ's treatment comes first and we know we'll get the absolute best care at MD Anderson.
I've already contacted the Houston Ground Angels and they'll be helping out with getting us where we need to be. You want an organization that is worth a hefty donation? There you go. Here's their address:
Houston Ground Angels
P.O. Box 683127
Houston, Tx. 77268-3127
Here's the website: http://www.houstongroundangels.org/
There's a bowl of ice cream calling me.
She's been taking her icky medicine with a minimum of fuss. We've developed the technique of giving her a little bit of meds, then a little piece of chocolate, then more meds, then chocolate, and so on. Before she knows it, the icky stuff is gone and all that's left is the good (relatively) tasting medicine.
She had a pretty mellow day watching a video or two, playing with the shoelaces from my running shoes, and opening a box of birthday presants that came from Clampitville (Aunt B and Uncle Hairy). Very nice gifts folks even though we expressly said, "NO PRESANTS!" this year since she's got so much stuff already and has been getting presants almost constantly since "The Crap" began.
Speaking of Aunt B an' 'em, We got to chat with them via the Hopecam all the way from Hawaii. We (or rather "I") also chatted with the Prices for a short bit as well. CJ wasn't all that interested.
Right now, she's over at Uncle Kolbey's threading frog beads onto a string. She's getting really good at that again.
Rachel has been doing most of the work today, taking Charlotte into the clinic and then going in to Romp n' Roll for the afternoon/evening shift. I get to work hard tomorrow.
I took advantage of my free 90-minute massage today at Massage Envy. I was quite the noodle afterwards. I might get a membership because I really want that once a month! :-)
So...what the heck is on the horizon? We are almost assuredly going to MD Anderson in Houston for the proton beam radiation. We're still not 100% sure when we're going, or how we're going to get there, or where we're going to stay but there are sure a lot of resources out there of which we could take advantage. Thanks to all of you for forwarding those resources to us, especially Deb Price (Nile's mom).
There's a strong possibility we will have to postpone Charlotte's birthday party. Very disappointing but CJ's treatment comes first and we know we'll get the absolute best care at MD Anderson.
I've already contacted the Houston Ground Angels and they'll be helping out with getting us where we need to be. You want an organization that is worth a hefty donation? There you go. Here's their address:
Houston Ground Angels
P.O. Box 683127
Houston, Tx. 77268-3127
Here's the website: http://www.houstongroundangels.org/
There's a bowl of ice cream calling me.
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