Alan had a good night after his first day of chemo. Miss Aimee came by today to keep him company while Daddy went for a haircut. While she was there, volunteers from Dec My Room came with a load of Sponge Bob and Cars stuff to decorate his room. Alan had just woken up and wasn't happy to see them but they left lots of stuff for him. In any case, we were very grateful for their organization.
It was time for dressing changes again today. Daddy kept him distracted through the changes with silly counting. Then it was time for PT, with Alan walking along to pick up his flash cards off floor.
Doc Huh came in to talk about plans for making this treatment outpatient, with an MRI after this round of chemo.
Showing posts with label Therapy. Show all posts
Showing posts with label Therapy. Show all posts
Wednesday, August 29, 2012
Tuesday, August 28, 2012
A bit fussy today
Alan was a little fussy today, with a bit of stomach rumbling, but continued bowel movements and gas. We replaced the Fentanyl patch today and voiced concerns about the stomach rumbles we've been hearing with the doctor. Rumbles back in June were indicative of a blockage in his gut, so we want to keep a close eye on them. The orders came through and we started the second cycle of Ifosfamide today.
We talked to the speech therapist about using modified PECS with OT, but we were unable to get PT due to time constraints. He played some more with the Wii and sat chair in his room for OT with his number flash cards.
Miss Carolyn (a friend of our friend Denise) who is doing a follow-up scan here at MDA, came by to visit.
Monday, August 27, 2012
Nibbling
Alan had a bit of a restless night last night, but after only a little vomiting this, he was ready for the day. He worked with Denise for PT today, walking while wearing the AFO with his socks and shoes. And didn't even want them off afterwards! He also worked with Lindsey a bit for OT. We set up two chairs in the room, one the small wooden chair from Rehabilitation, the other a standard room chair that was just the right height to use at a table. This way we can work on OT activities in his room if one of the OTs are not available. We took pictures to help build a PECS board, at the OT's suggestion, as a way to help Alan handle the procedures, tell us where he hurts, or what he wants.
Since we have had enough negative cultures, the doctors have stopped the antibiotics and have drafted orders for chemo - the plan is to start Tuesday. Alan had several poops today, a good sign!
Alan took the big MDA tour today while wearing a calculator on his head. Silly boy! We know that he always has numbers on the brain. He saw daddy eating a banana and wanted some himself! After having some nibbles, he gave the rest to daddy and insisted that daddy finish the rest of the banana! Almonds were greeted with a 'patooey' but he ate peanuts and goldfish. He drew a little, played the rocket math game on the iPad several times, but really enjoyed the Wii Cookie Monster Counting Carnival game which he hadn't played since before we were admitted. He played for almost an hour!
Numbers on the brain
Yummy banana!
Cookie Monster's Counting Carnival
=======================================
[video - Alan playing the Wii at the hospital]
Since we have had enough negative cultures, the doctors have stopped the antibiotics and have drafted orders for chemo - the plan is to start Tuesday. Alan had several poops today, a good sign!
Alan took the big MDA tour today while wearing a calculator on his head. Silly boy! We know that he always has numbers on the brain. He saw daddy eating a banana and wanted some himself! After having some nibbles, he gave the rest to daddy and insisted that daddy finish the rest of the banana! Almonds were greeted with a 'patooey' but he ate peanuts and goldfish. He drew a little, played the rocket math game on the iPad several times, but really enjoyed the Wii Cookie Monster Counting Carnival game which he hadn't played since before we were admitted. He played for almost an hour!
Numbers on the brain
Yummy banana!
Cookie Monster's Counting Carnival
=======================================
[video - Alan playing the Wii at the hospital]
Wednesday, August 22, 2012
New lines and walking
Alan's G-tube was clogged last night and could not be opened up with any technique. His nurse tried cola, warm water, and baking soda - none of them worked. Since he was going down to Interventional Radiology to put in another line, IR will also replace the G-tube. It seems whenever we go down to we're always getting extra stuff done. IR decided to put in an internal jugular catheter (IJC) in his neck on the same side as PICC. While he was under, they also changed his nephrostomy dressings.
Once he was back upstairs, he felt good enough to walk to nurse's station with AJ this afternoon. He also got a new fentanyl patch today.
Painting with Miss Sheila
Watching his vitals in recovery
Choosing a sticker after walking
=============================================
[Video - Alan walking out to the nurses station]
Once he was back upstairs, he felt good enough to walk to nurse's station with AJ this afternoon. He also got a new fentanyl patch today.
Painting with Miss Sheila
Watching his vitals in recovery
Choosing a sticker after walking
=============================================
[Video - Alan walking out to the nurses station]
Monday, August 20, 2012
Port removal with hiccups
This morning Alan went down to OR for surgery to remove his port. Miss Sheila from Child Life came to keep him entertained while we waited through all the preliminaries. She had a white "bunny suit" to go over her clothes so she could go all the way into the OR with Alan. Unfortunately Mommy had to say good bye in the hallway.
Holly came to see us in the surgical waiting room about half an hour in to the procedure to tell us that the tubing from the port had adhered to his vein, so surgeon had to make an incision in his collar bone area to be able to get it loose. That meant they couldn't run a CVC there, so they would put a PICC line in his other arm instead. However when they put it in they couldn't get a blood draw, so it came out. They left the old PICC line on the right arm instead of replacing so they don't risk losing access and also put an IV in his right hand. We just can't seem to catch a break, even on something that should be a standard procedure.
Alan bounced back from the procedure pretty quickly, enough that he could work with Lindsay the OT. We also replaced the Fentanyl patches with a single 25 mcg/hr patch this afternoon. Because of the incision in his left arm from the PICC attempt, we have to do BPs on his left leg now, which makes readings for whether the Labetalol is needed difficult. A BP taken on the leg will read higher than one on his arm, but there is no definitive way convert what that reading would have been if taken on his arm so the nurse will have to make a judgement call.
Darci blowing bubbles for Alan while we wait for Transport
Miss Sheila in the bunny suit to go into OR with Alan and the "pink iPad"
The iPad is now the world's most expensive tray
Holly came to see us in the surgical waiting room about half an hour in to the procedure to tell us that the tubing from the port had adhered to his vein, so surgeon had to make an incision in his collar bone area to be able to get it loose. That meant they couldn't run a CVC there, so they would put a PICC line in his other arm instead. However when they put it in they couldn't get a blood draw, so it came out. They left the old PICC line on the right arm instead of replacing so they don't risk losing access and also put an IV in his right hand. We just can't seem to catch a break, even on something that should be a standard procedure.
Alan bounced back from the procedure pretty quickly, enough that he could work with Lindsay the OT. We also replaced the Fentanyl patches with a single 25 mcg/hr patch this afternoon. Because of the incision in his left arm from the PICC attempt, we have to do BPs on his left leg now, which makes readings for whether the Labetalol is needed difficult. A BP taken on the leg will read higher than one on his arm, but there is no definitive way convert what that reading would have been if taken on his arm so the nurse will have to make a judgement call.
Darci blowing bubbles for Alan while we wait for Transport
Miss Sheila in the bunny suit to go into OR with Alan and the "pink iPad"
The iPad is now the world's most expensive tray
Sunday, August 19, 2012
Playing with pups
The IV morphine in Alan's PCA was stepped down to 1.0/hour and we replaced his Fentanyl patch. He was still a little shaky so we asked Doc O to up the patch to 25/hour. Hopefully it's a step forward in managing his pain.
Alan was a litte more interested at dog therapy today, feeling Sesame's tail, feeding treats to Gumbo, and throwing the ball to Minion. It still wasn't quite up his normal enthusiasm level but it was good to see him having fun with the doggies.
Uncle Peter brought big brother Kevin home from his visit with our family. They were diverted and delayed by thunderstorms in the area but finally made it by Saturday night. Alan wasted no time in ordering Uncle Peter to blow bubbles again. It was nice to be together again, at least until Kevin has to go back to school next week.
On Sunday Doctor H2 came by to check on Alan. He's pleased overall with Alan's progress, but he is waiting for the infection to clear. There has been some difficulty tracking down where the ECG results went to. We confirmed with the him that the ECG was done under and that it was Alan's name and medical number.
Feeling Sesame's tail
Feeding Gumbo a treat
Throwing balls to Minion
Big brother Kevin is back and he brought popcorn!
Sleepy
Alan was a litte more interested at dog therapy today, feeling Sesame's tail, feeding treats to Gumbo, and throwing the ball to Minion. It still wasn't quite up his normal enthusiasm level but it was good to see him having fun with the doggies.
Uncle Peter brought big brother Kevin home from his visit with our family. They were diverted and delayed by thunderstorms in the area but finally made it by Saturday night. Alan wasted no time in ordering Uncle Peter to blow bubbles again. It was nice to be together again, at least until Kevin has to go back to school next week.
On Sunday Doctor H2 came by to check on Alan. He's pleased overall with Alan's progress, but he is waiting for the infection to clear. There has been some difficulty tracking down where the ECG results went to. We confirmed with the him that the ECG was done under and that it was Alan's name and medical number.
Feeling Sesame's tail
Feeding Gumbo a treat
Throwing balls to Minion
Big brother Kevin is back and he brought popcorn!
Sleepy
Friday, August 17, 2012
Eight weeks
Alan's white count is up to 35,000! The shot of Neulasta he got last week stays in the system for several weeks so it is still having an effect in boosting his white counts. Today is Friday, the start of yet another week, which means it's time for dressing changes. We will change the two nephrostomy tubes, the G-tube, and PICC line, but we will take the port needle out rather than replacing it and changing the dressing since we will be removing it Monday.
Holly, Doc HJ's PA, came to discuss Monday's surgery. We are scheduled first thing in the morning to remove the port and put in a percutaneous subclavian line (rather than the Broviac Catheter so it can be removed more easily). The surgeon doing the procedure didn't think that replacing the PICC would do very much but the Attending wanted Alan to have all fresh lines (apparently replacing the PICC line is a standard procedure in transplant patients).
It was another day of hard work with the OT and PT. Today Alan walked out the door to the wheelchair a few feet into the hallway. Then it was time to go down to Rehabilitation with the OT to sit in the chair again and work on numbers. He was a little annoyed that the Scrabble tiles didn't have a full range of numbers and the card game only went up to 12.
Miss Sheila from Child Life brought Cora, a doll for demonstrating medical play, and Alan took care of her. He actually wore the stethoscope and "listened" to Cora, pronouncing her "Perfect!". We were talking with Miss Sheila about Alan's OT session and it turned out she had a bag of orphaned Scrabble tiles that we could use for numbers - all the way up to 98! He had a blast once Daddy grabbed a Sharpie and numbered the blank side of the tiles.
We took a long walk over the sky-bridge, picking up a box of popcorn for Alan from the Fountain first. We wandered around the Mays Clinic some more, this time checking out a section we hadn't explored before. There was nice hospitality center for patients and caretakers, a museum exhibit about the history of MDA and a very fun-looking Child Visitation center.
Alan earned stickers for walking again
Sitting for OT again
Mmm, popcorn!
Flushing Cora's port
"Perfect!"
Arranging his numbers
Holly, Doc HJ's PA, came to discuss Monday's surgery. We are scheduled first thing in the morning to remove the port and put in a percutaneous subclavian line (rather than the Broviac Catheter so it can be removed more easily). The surgeon doing the procedure didn't think that replacing the PICC would do very much but the Attending wanted Alan to have all fresh lines (apparently replacing the PICC line is a standard procedure in transplant patients).
It was another day of hard work with the OT and PT. Today Alan walked out the door to the wheelchair a few feet into the hallway. Then it was time to go down to Rehabilitation with the OT to sit in the chair again and work on numbers. He was a little annoyed that the Scrabble tiles didn't have a full range of numbers and the card game only went up to 12.
Miss Sheila from Child Life brought Cora, a doll for demonstrating medical play, and Alan took care of her. He actually wore the stethoscope and "listened" to Cora, pronouncing her "Perfect!". We were talking with Miss Sheila about Alan's OT session and it turned out she had a bag of orphaned Scrabble tiles that we could use for numbers - all the way up to 98! He had a blast once Daddy grabbed a Sharpie and numbered the blank side of the tiles.
We took a long walk over the sky-bridge, picking up a box of popcorn for Alan from the Fountain first. We wandered around the Mays Clinic some more, this time checking out a section we hadn't explored before. There was nice hospitality center for patients and caretakers, a museum exhibit about the history of MDA and a very fun-looking Child Visitation center.
Alan earned stickers for walking again
Sitting for OT again
Mmm, popcorn!
Flushing Cora's port
"Perfect!"
Arranging his numbers
Sunday, August 5, 2012
A busy weekend
Alan had a fever Friday night so they docs added a new antibiotic today in addition to Daptomycin, which is good for the infection in his blood. Tigecycline will take care of the infection through the rest of his body (like his intestine and nephrostomies tubes).
Saturday morning, Alan got to go to Rehabilitation downstairs to see therapy dogs Tux and Cowboy. Alan loves dogs so much we hoped he would get excited. He's been through so much and is still dealing with pain, so he wasn't as perked up by the dogs as we hoped he'd be. He threw a ball for Tux and seemed to enjoy watching Tux and Cowboy play. We'll take him down again next Saturday.
After seeing the dogs, Alan wanted to take a long walk . We wandered around the empty halls of MDA for a while and returned to the family room on the 10th floor where Alan was fascinated by an Olympic soccer game. After getting back to his room, we found that he did a very small poop . We felt a lot better since at least now we know things can move all the way through.
He slept reasonably well Saturday night. There were still waves of pain still coming but were much shorter. We took another walk Sunday morning, meeting Summer again in the hall on our way out where she shared her Sponge Bob blanket with Alan.
Coming back from the walk we noticed the bed was wet, and so was the sheet lining the wheelchair. Upon closer inspection, the left nephrostomy dressing was soaked with what looked like urine. We changed the dressing and we saw that the tube was kinked. Our nursing aid noted that the volume she emptied out of that bag was significantly less than normal. The urine had probably backed up and spilled out. Once we unkinked the tube the bag on the left side started filling again. We changed the right dressing too so that they dressing changes would still be on the same day.
The docs added Aloxi, a new long acting nausea medication, and Emend, for delayed nausea, to replace Zofran. Hopefully that will help with Alan's vomiting. They also added Lacutolose in addition to Senna to help with bowel movements. Since he finally had poop during our walk Sunday morning and ended up having four poops that day we were feeling a lot better.
On Sunday afternoon Miss Angela and her Aunt Mary came to visit and brought presents along with mail from home. More bubbles and a slinky and more! Alan had fun and it was so nice to visit.
Tux even gets his own ID badge!
Watching Olympic soccer
Cheering the players on
Alan and Summer - check out the cool Sponge Bob blanket she lent him for his walk!
Miss Angela demonstrates the slinky
Ooooh slinky!
Saturday morning, Alan got to go to Rehabilitation downstairs to see therapy dogs Tux and Cowboy. Alan loves dogs so much we hoped he would get excited. He's been through so much and is still dealing with pain, so he wasn't as perked up by the dogs as we hoped he'd be. He threw a ball for Tux and seemed to enjoy watching Tux and Cowboy play. We'll take him down again next Saturday.
After seeing the dogs, Alan wanted to take a long walk . We wandered around the empty halls of MDA for a while and returned to the family room on the 10th floor where Alan was fascinated by an Olympic soccer game. After getting back to his room, we found that he did a very small poop . We felt a lot better since at least now we know things can move all the way through.
He slept reasonably well Saturday night. There were still waves of pain still coming but were much shorter. We took another walk Sunday morning, meeting Summer again in the hall on our way out where she shared her Sponge Bob blanket with Alan.
Coming back from the walk we noticed the bed was wet, and so was the sheet lining the wheelchair. Upon closer inspection, the left nephrostomy dressing was soaked with what looked like urine. We changed the dressing and we saw that the tube was kinked. Our nursing aid noted that the volume she emptied out of that bag was significantly less than normal. The urine had probably backed up and spilled out. Once we unkinked the tube the bag on the left side started filling again. We changed the right dressing too so that they dressing changes would still be on the same day.
The docs added Aloxi, a new long acting nausea medication, and Emend, for delayed nausea, to replace Zofran. Hopefully that will help with Alan's vomiting. They also added Lacutolose in addition to Senna to help with bowel movements. Since he finally had poop during our walk Sunday morning and ended up having four poops that day we were feeling a lot better.
On Sunday afternoon Miss Angela and her Aunt Mary came to visit and brought presents along with mail from home. More bubbles and a slinky and more! Alan had fun and it was so nice to visit.
Tux even gets his own ID badge!
Watching Olympic soccer
Cheering the players on
Alan and Summer - check out the cool Sponge Bob blanket she lent him for his walk!
Miss Angela demonstrates the slinky
Ooooh slinky!
Thursday, August 2, 2012
Working and playing
The other PT, AJ, came today. Alan sat independently, stood with help and turned a little. Great progress! He asked to go for a walk so we went to the family room for a while, then he asked for bubbles. It's great that he's perking up enough to make requests.
Doc H2 came to talk about his plans once the two cycles of Ifosfamide are done - he has a plan B in place ready. Alan's treatment needs to be thought of in small pieces, small steps, small changes one at a time. With a recurrent tumor, there are no home runs for his treatment.
Judy made a quilt square for a Houston ACS fundraiser, the Cattle Baron's Ball, by tracing Alan's hand and turning the hand print into a birthday cake with candles. One of the American Cancer Society's campaigns is for More Birthdays, and certainly we are working on getting Alan to his next birthday in November.
ACS quilt block
Working hard for AJ
Doc H2 came to talk about his plans once the two cycles of Ifosfamide are done - he has a plan B in place ready. Alan's treatment needs to be thought of in small pieces, small steps, small changes one at a time. With a recurrent tumor, there are no home runs for his treatment.
Judy made a quilt square for a Houston ACS fundraiser, the Cattle Baron's Ball, by tracing Alan's hand and turning the hand print into a birthday cake with candles. One of the American Cancer Society's campaigns is for More Birthdays, and certainly we are working on getting Alan to his next birthday in November.
ACS quilt block
Working hard for AJ
Friday, July 27, 2012
Five weeks
Alan continues not to have any bowel movements and keeps experiencing waves of pain, so a GI doc came in this morning to check him out. During the exam, his belly was soft so they didn't think it was a major obstruction. They did a rectal exam and didn't find any impacted fecal matter (which could be taken care of with an enema and more laxatives to soften and move the stool) but they could feel the tumor pushing on the rectum. Even if there isn't a true obstruction Alan could still feel discomfort from the pressure on his rectum. The GI said he would talk to the floor docs and surgeons about a colostomy to get around the blockage, which would have implications for chemo.
He also suggested getting a G-tube for feeding Alan and glutamine supplements. The absorptive surface of the intestine becomes less with disuse while he is exclusively fed using TPN, so the supplements and tube feeding will help maintain the health of his intestinal tract.
The red lumen of PICC line was backing up and not flushing so the nurse called in the IV team for TPA again. It turns out it was a clot in the cap - a much easier problem to fix. However, being Friday it was time to change PICC line dressing. The TPN is going through the port so the needle, dressing and tubing will be changed when a new TPN bag is hung tonight.
Miss Denise the PT came in the afternoon. Alan sat independently, stood for a while and even turned himself 180 degrees and back twice!
He also suggested getting a G-tube for feeding Alan and glutamine supplements. The absorptive surface of the intestine becomes less with disuse while he is exclusively fed using TPN, so the supplements and tube feeding will help maintain the health of his intestinal tract.
The red lumen of PICC line was backing up and not flushing so the nurse called in the IV team for TPA again. It turns out it was a clot in the cap - a much easier problem to fix. However, being Friday it was time to change PICC line dressing. The TPN is going through the port so the needle, dressing and tubing will be changed when a new TPN bag is hung tonight.
Miss Denise the PT came in the afternoon. Alan sat independently, stood for a while and even turned himself 180 degrees and back twice!
Wednesday, July 25, 2012
Getting ready for the next step
Yesterday's x-ray shows some stool but no great blockage. The last cultures taken from Alan's lines on 23rd were negative so hopefully the infection is cleared. Another set of cultures was taken today to be sure, but they will set the IV antibiotics to be 10 days from the last positive culture taken on the 19th (so we are definitely in-patient until the 29th).
Since we are getting negative results for the infections in the lines, Doc H2 came in to talk to us about starting next stage of his treatment. He wants to take advantage of this time and start to start the two-week continuous Ifosfamide. We are still rotating the Vancomycin betweeen the PICC and port lines so he needs to confirm the compatability of the Ifosfamide with the Vanocmycin and TPN and the issues of access. He is still considering some other back up plans, including the amino acid study and an oral chemotherapy (Pazopanib) which has been used in soft tissue sarcomas in adults.
Alan is still not eating or drinking much but we are still good on the TPN for a while. We confirmed with docs that we will not be taking out the nephrostomy tubes until we have some imaging of the tumor and can be sure that there will not be any blockage of the kidneys. Since we are changing nephrostomy dressings every other day now it was time to change them again. Alan was not happy with that but he got stickers and a popsicle and napped after.
The PT Miss Denise came back after he woke up from his nap. Alan sat at the edge of the bed supporting himself for a couple of minutes and then took 5-6 steps with her help!
A well-deserved nap!
Since we are getting negative results for the infections in the lines, Doc H2 came in to talk to us about starting next stage of his treatment. He wants to take advantage of this time and start to start the two-week continuous Ifosfamide. We are still rotating the Vancomycin betweeen the PICC and port lines so he needs to confirm the compatability of the Ifosfamide with the Vanocmycin and TPN and the issues of access. He is still considering some other back up plans, including the amino acid study and an oral chemotherapy (Pazopanib) which has been used in soft tissue sarcomas in adults.
Alan is still not eating or drinking much but we are still good on the TPN for a while. We confirmed with docs that we will not be taking out the nephrostomy tubes until we have some imaging of the tumor and can be sure that there will not be any blockage of the kidneys. Since we are changing nephrostomy dressings every other day now it was time to change them again. Alan was not happy with that but he got stickers and a popsicle and napped after.
The PT Miss Denise came back after he woke up from his nap. Alan sat at the edge of the bed supporting himself for a couple of minutes and then took 5-6 steps with her help!
A well-deserved nap!
Monday, July 23, 2012
A therapy day
This morning Alan worked with speech therapist Miss Kelli again. Because of the continuing pain he was quite cranky but he still worked hard and earned some stickers. The PT Miss Denise came back in the afternoon to work with him on standing again, so today he wore his AFO for for the first time since he was admitted to the hospital. He walked some more today which was a great workout!
Afterwords he asked for the "pink play", AKA Miss Sara's iPhone in a pink case. His own toys weren't good enough, or perhaps it's just he's been in the hospital so long that anything different is more fun. When we told him that the "pink play" had gone home with Miss Sara, he called out her name, "Sara! Sara! Sara!".
Afterwords he asked for the "pink play", AKA Miss Sara's iPhone in a pink case. His own toys weren't good enough, or perhaps it's just he's been in the hospital so long that anything different is more fun. When we told him that the "pink play" had gone home with Miss Sara, he called out her name, "Sara! Sara! Sara!".
Thursday, July 19, 2012
Tag team help
Today we had to say good bye Auntie Joys, who has been here since July 4th helping out. However, Miss Sara arrived later today for the weekend, and of course Uncle Peter is still here.
Doc H2 came in quickly without any changes. He wants to get rid of Alan's infection before starting next chemo. The last culture taken on Monday shows some colonies of bacteria but nothing like the initial culture. They will take another culture today and hopefully it will be cleared up soon.
Today they lowered the basal rate of morphine down to zero. Now we just have the button every 20 minutes and the nursing boluses available every two hours. Another step forward, though we'll see how he handles the pain and withdrawal without the constant morphine.
We went on a walk with Sheila from Child Life today, going around the Fountain and then the Park. Alan got a treat at the gift shop from Mr. Bob (the manager of the whole building!), then we went back to his room where he worked with PT. sitting up on his own and some more standing, kicking the ball while sitting on the edge of the bed
Standing up and checking out the little robot from Mr. Bob
Stickers from AJ for working so hard
Miss Sara came with more bubbles!!!!
Doc H2 came in quickly without any changes. He wants to get rid of Alan's infection before starting next chemo. The last culture taken on Monday shows some colonies of bacteria but nothing like the initial culture. They will take another culture today and hopefully it will be cleared up soon.
Today they lowered the basal rate of morphine down to zero. Now we just have the button every 20 minutes and the nursing boluses available every two hours. Another step forward, though we'll see how he handles the pain and withdrawal without the constant morphine.
We went on a walk with Sheila from Child Life today, going around the Fountain and then the Park. Alan got a treat at the gift shop from Mr. Bob (the manager of the whole building!), then we went back to his room where he worked with PT. sitting up on his own and some more standing, kicking the ball while sitting on the edge of the bed
Standing up and checking out the little robot from Mr. Bob
Stickers from AJ for working so hard
Miss Sara came with more bubbles!!!!
Friday, January 13, 2012
Carpe Diem
With the looming prospect of a new chemo treatment with as yet unknown effects, radiation therapy most certainly in his future and the possibility of another radical surgery, we've been trying to take Alan out to enjoy life as much as possible. We've been through this feeling before, like we have to live life to the fullest and make lots of memories just in case the situation gets really rough.
That has included a trip to SeaWorld with Grandma before the season ended (where Alan discovered the joys of a big bucket of popcorn and rode the penguin habitat moving walkway over and over again), a late outing on a school night to see an amazing tree lit with thousands of lights, and many visits to Chuck E. Cheese.
Alan has come to love Chuck E. Cheese so we've been going there a lot lately. He loves the games and rides and feeding the ticket muncher. We met his PT there today so we wouldn't have to rush home. All the fun and games kept him distracted while she worked on bearing weight on his bad leg and motivating him to squat and jump.
Alan had so much fun feeding the ticket muncher that when he was done, he walked over to the Ticket Blaster and knocked on the door. "Open please!!!" He wanted to get to all the tickets inside. As much as we want to indulge him in all things, it was time to go home.
At SeaWorld with Grandma
A yummy Shamu ice cream
Check out this beautiful tree!
"Oooh, ahhh!"
One of Alan's favourite games - look at all those tickets!
Another fun game, flying a jet!
"This is great!"
Working hard for the PT while feeding the ticket muncher
Punching ducks with a little friend
That has included a trip to SeaWorld with Grandma before the season ended (where Alan discovered the joys of a big bucket of popcorn and rode the penguin habitat moving walkway over and over again), a late outing on a school night to see an amazing tree lit with thousands of lights, and many visits to Chuck E. Cheese.
Alan has come to love Chuck E. Cheese so we've been going there a lot lately. He loves the games and rides and feeding the ticket muncher. We met his PT there today so we wouldn't have to rush home. All the fun and games kept him distracted while she worked on bearing weight on his bad leg and motivating him to squat and jump.
Alan had so much fun feeding the ticket muncher that when he was done, he walked over to the Ticket Blaster and knocked on the door. "Open please!!!" He wanted to get to all the tickets inside. As much as we want to indulge him in all things, it was time to go home.
At SeaWorld with Grandma
A yummy Shamu ice cream
Check out this beautiful tree!
"Oooh, ahhh!"
One of Alan's favourite games - look at all those tickets!
Another fun game, flying a jet!
"This is great!"
Working hard for the PT while feeding the ticket muncher
Punching ducks with a little friend
Wednesday, October 26, 2011
Surgical follow up with Doc L
First things first, the scans are clear and Alan is great!
While we were going around the hospital for the scans, we got a call from Jo at UT Television. Doc L has commissioned a documentary on hemipelvectomies and Alan was one of the four patients chosen to be featured. There was a bit of a scramble when they realized that Alan was coming in today and wouldn't be back for another three months. Unless they delayed finishing the production they had to speak to us and film Alan today.
They met us at the Sarcoma Center waiting room to talk about Alan's case and let us know how the afternoon would progress. They started with an interview with Judy once an exam room opened up. It turns out that Jo is also doing a piece on The Rotary House, so she had Judy do a segment on our stay there as well.
They reset the exam room for our consultation with Doc L's PA Kristi, then got footage of Alan waiting with us in the exam room and our visit with Kristi. We got to see a copy of the scans, clean! and read the report. No evidence of tumor recurrence and nothing unusual. Kristi did a physical examination and was happy with his range of motion.
While we were waiting to see Doc L, the documentary team took footage of Alan walking up and down the hall. Doc L eventually came in with one of her fellows, then Kristi and and the nurse squeezed into the already crowded room. Alan said "One more!"
Doc L and Kristi had a chance to watch Alan walk while Judy was being interviewed, but now they watched him walk with the brace off. Doc L checked how his bad leg bent and kicked and we mentioned that we had seen very little movement of his foot or knee. Although the leg brace is articulated, Doc L wants Lorenzo to remove hip brace from AFO, so Alan will be forced to use his leg more and start bending his knee. Alan will only have the AFO on his foot. She will also talk with Mr. Marc about concentrating the PT on bending his knee (by getting the tibialis anterior muscle to fire).
We had mentioned our concerns about Alan walking without the support of the brace, especially since Lorenzo had mentioned the theoretical possibility of tearing his femoral artery if the femur shifted and knicked it. Doc L told us that Alan still has his femoral head, so there is no surface that would pose a danger. There is little chance of injury to the femoral artery, at least no more than any other child his age. Since Alan has been walking without the brace (usually during lazy mornings that the family spends in PJs), she wants him to walk with just the AFO in order to encourage those leg muscles to further develop.
A successful visit! We will be back in January for the next set of scans and exam with Doc L.
Finally beginning to perk up, Alan drinks some milk.
Alan's scan - no tumor!
Alan and Kristi make some finger letters.
Watching Sponge Bob while we wait for Doc L.
On the way home with a snack.
While we were going around the hospital for the scans, we got a call from Jo at UT Television. Doc L has commissioned a documentary on hemipelvectomies and Alan was one of the four patients chosen to be featured. There was a bit of a scramble when they realized that Alan was coming in today and wouldn't be back for another three months. Unless they delayed finishing the production they had to speak to us and film Alan today.
They met us at the Sarcoma Center waiting room to talk about Alan's case and let us know how the afternoon would progress. They started with an interview with Judy once an exam room opened up. It turns out that Jo is also doing a piece on The Rotary House, so she had Judy do a segment on our stay there as well.
They reset the exam room for our consultation with Doc L's PA Kristi, then got footage of Alan waiting with us in the exam room and our visit with Kristi. We got to see a copy of the scans, clean! and read the report. No evidence of tumor recurrence and nothing unusual. Kristi did a physical examination and was happy with his range of motion.
While we were waiting to see Doc L, the documentary team took footage of Alan walking up and down the hall. Doc L eventually came in with one of her fellows, then Kristi and and the nurse squeezed into the already crowded room. Alan said "One more!"
Doc L and Kristi had a chance to watch Alan walk while Judy was being interviewed, but now they watched him walk with the brace off. Doc L checked how his bad leg bent and kicked and we mentioned that we had seen very little movement of his foot or knee. Although the leg brace is articulated, Doc L wants Lorenzo to remove hip brace from AFO, so Alan will be forced to use his leg more and start bending his knee. Alan will only have the AFO on his foot. She will also talk with Mr. Marc about concentrating the PT on bending his knee (by getting the tibialis anterior muscle to fire).
We had mentioned our concerns about Alan walking without the support of the brace, especially since Lorenzo had mentioned the theoretical possibility of tearing his femoral artery if the femur shifted and knicked it. Doc L told us that Alan still has his femoral head, so there is no surface that would pose a danger. There is little chance of injury to the femoral artery, at least no more than any other child his age. Since Alan has been walking without the brace (usually during lazy mornings that the family spends in PJs), she wants him to walk with just the AFO in order to encourage those leg muscles to further develop.
A successful visit! We will be back in January for the next set of scans and exam with Doc L.
Finally beginning to perk up, Alan drinks some milk.
Alan's scan - no tumor!
Alan and Kristi make some finger letters.
Watching Sponge Bob while we wait for Doc L.
On the way home with a snack.
Wednesday, October 19, 2011
Office visit 10/19
10/19 11:32Day 3 of this round of treatment. Another uneventful day, watching "Dora the Explorer" and "Max and Ruby". Alan pretty much knows the routine now... though we think about 2 hours sitting is the max he can tolerate before wanting to walk. Which is good...because the normal infusion rate ends up taking about an hour and a half.
ANC 3190
But he worked hard later on during his physical therapy at home... trying to ride his tricycle and walking around almost the whole housing circle! A perfect day to be outside to do so... dry, cool, with a slight breeze. Here comes fall!
Sunday, July 31, 2011
Walking at Morgan's Wonderland
Click on the picture to see a full-size picture of Alan's route
It's been two weeks since we got Alan's gait trainer, and so far he's used it around the house, walking 10-15 foot distances for viewings of his favourite videos or ice cream. At the surgeon's office, he walked a little bit further from the waiting area down the hall to the exam room. With chemotherapy and a trip to MD Anderson last week, we haven't yet been able to take him somewhere open with smooth flat surfaces where he could really take off until yesterday morning.
The bad news was that Tropical Storm Don fizzled out before sending us much needed rain. The good news was that since it was dry we were able to go to Morgan's Wonderland and let Alan loose. As soon as we went through the gates of the Welcome Center, Alan wanted to get out of the stroller and use his walker. He has never asked for the walker before so this was a good sign. He walked all the way from the Welcome Center to the Butterfly Playground. He even attempted to go up one of the ramps in the stroller but between the incline and the extra "slidiness" of the surface, he abandoned the walked and crawled for a while instead.
He got back up the walker to get to the other side of the Butterfly Playground and again after refreshing himself with some milk (he was walking and playing hard!) to get around some of the standing toys. Then it was on to the water tables, where he was able to reach much better with the gait trainer than sitting in his stroller. He got soaking wet!
We took the boys on the train to blow dry, then the Sensory Village to cool off before lunch. Alan did a lot of standing and even some side to side cruising against the Falling Candy light wall. After lunch and the Off Road Adventure, we went to the Event Center for Alan to have some room to run around in the air conditioning. He was pretty pooped though, and decided to crawl for a while instead. We let him go since he'd worked pretty hard and we figure it will take time for him to realize he will get around much more quickly and easily by walking than crawling. In fact, he did voluntarily come back to the walker after a while, even if it was only for a short time. All in all, a very successful day of play/work!
Alan has a determined look on his face as he walks to the other side of the Butterfly Playground
Ahhh, recharging with some milk after some hard playing
Walking to the different standing toys
Making music....
... and racing cars with Kevin.
So much easier to reach the water this way!
Alan and Kevin enjoying the water
Look Mommy! I'm walking through the arch on my own!
Free wheelin' around the Event Center
=========
[video - Alan Walks at Morgan's Wonderland]
[video - Alan stands and cruises at the light wall]
Subscribe to:
Posts (Atom)