Axel is scheduled to have his halo removed in Philadelphia on August 10th. WOOT WOOT!!!!
We were going to try to make a family event of it, especially since it's his birthday week, AND his first birthday in our family. Unfortunately I don't think finances are going to allow for plane tickets for Dean and Angela. Here's to hoping finances change in the next couple of weeks. We have a big birthday coming up! Axel's first birthday in our family!!!!!
Showing posts with label AAI. Show all posts
Showing posts with label AAI. Show all posts
Thursday, July 07, 2011
Saturday, July 02, 2011
Philly Update
On Weds Axel and I boarded a plane for Philadelphia again. This time the plane actually took off! Going through the airport was really interesting. We had a backpack, a roller back, the wheelchair we had to bring back to Shriners (which Axel was sitting in since he needs to be in a wheelchair for long walks in big crowds, like around the airport) and also a walker that needed to go back as well. All with one mom pushing or pulling the various items.
The first step is going through security. I am becoming less and less patient with TSA. They're either a pain in the neck and useless, or TOO helpful, which is also a pain. LOL I wish there were a happy medium! Having been on 23 flights in the past 15 months, I have become an expert at packing to go through security checkpoints. I wear slip-on shoes, no belts (learned that mistake a year ago. LOL) no jewelry, nothing in my pockets, and NO liquids if I can help it.
So Axel and I get to security at the Minneapolis airport, and I quickly disperse the items that need to go through the xray machine. For Axel and I, that meant 4 bins, plus the walker (it fits through the machine!) and a backpack. Then they take Axel through, and I have to go through the metal detector. I learned after our trip on May to ask if they could please wait to check Axel until I had collected my things and could focus all my attention there instead of trying to watch him AND my belongings at the same time. They said sure! In the seconds it took me to ask that, someone (I think a TSA agent) had unfolded the walker for Axel to use. THANK YOU! Except that we don't need it since he's in a wheelchair AND I don't know how to unfold it. LOL Someone else had shifted my things around, moving all the tubs into one pile, except that my laptop was in one of them...on the bottom...making it look empty. Anyway, I quickly shoved things into their appropriate places and lugged everything over to where Axel and a TSA agent were waiting. They checked him over, I put his shoes back on, and we were on our way.
We arrived to our gate at.the.far.end.of.the.airport with 30 minutes to spare before boarding. SCORE!!! I was sitting there sweating to death from the long walk, when I had a thought. "Did I get the laptop?" As I though that, an announcement came over the loud speaker. "Would the traveler who left a laptop at security station D please return for it." I unzipped the backpack...nope. No laptop.
Crap!
I asked the gate agent if I could leave the roller bag and backpack there while I RAN back to the other end of the airport. No dice!!!! Axel and I made the trip VERY fast, and arrived back at the gate, dripping with sweat, just as they were ready to pre-board Axel and I.
My good friend Colleen picked us up at the airport. I cannot thank her enough for the immense amount of help she's been to us the three times we've been to Philly so far. From picking us up at the airport to driving us to Ronald McDonald house. This time we stayed with her, and she dropped us off at the clinic Thursday morning on her way to work, THEN had to drop her little guy Nolan off and get herself to work. She has really gone out of her way for us, and we can't thank her enough!
So the clinic visit: It was GREAT!!! I really didn't have a way to explain to Axel where we were going on this trip. It was really cute when we pulled up in front of the clinic, and he touched his halo and started jabbering. I'm sure he thought he was here for another traumatic event, and that we'd duped him into it!
First, we checked in, and ran into Axel's surgeon, Dr. Samdani. He was really pleased to see how well Axel is getting around! Next went to the physical therapy department and got rid of the bulky wheelchair and walker. We have another wheelchair we had left with them in May that we'd be bringing home with us. It's a little too small for Axel now (it fit him just right in February!) but was good enough to get us home. Still, it was really nice to not have to be dragging the bulky stuff around!
Next we went to Xray where Axel had new pictures taken of his neck. I was anxious to see the new bone growth!
That done, we headed to the clinic to meet up with Axel's surgical team. They were all thrilled to see how well Axel was doing, AND how wonderful his pins look! You may remember that a few weeks ago Axel's pins were badly infected. I have to clarify something here. These "pins" are actually 1/4 inch SCREWS that are screwed 1/8 inch into Axel's skull, and each screw has 8 lbs per square inch on the skull. They NEVER come out except when the neurosurgeon removes them to take the halo off. That means Axel has not been able to have a bath since his surgery back on May 16th. Anyway, the pins now look great. A combination of 10 days of antibiotics (which ended a couple weeks ago) along with a new cleaning regimen, and things are looking perfect.
So, here is a picture of the computer screen with Axel's xrays displayed on it (you can click on it to make it bigger.) :
See how long those screws are in his neck? BLECH! See the balls at the head end of the screws? That is actually the bone graft. If you blow it up big, you can see there are shadows in it, and on the picture on the left you can see there are clearly balls of bone. When we go back in 6 weeks they should be grown together into one solid piece of bone.
And, the best news of all? When we go back in six weeks, Axel will be getting his halo off!!!
Actually, if he wasn't head banging in his sleep, he would have gotten it off at this visit, but since he's so rough on his body it's really not advisable right now. That's ok! We're all for erring on the side of caution! When he gets the halo off, he will have no muscle strength to hold up his head, so he'll be in a neck brace just like the one he had before surgery. This will stay on for about another three months.
Axel was pretty relieved to be leaving the clinic without having suffered one single painful event! I can't wait until mid August when I can tell him that he's going to get that thing off! The removal itself is a quick procedure, taking just a few minutes. Even so he will have an I.V. placed, and be sedated for the removal so he....AND THE MOM... are not so traumatized. I've heard from good friends that the halo removal is NOT FUN, so I'm glad they said he'd be sedated.
I love this picture of Axel looking at his xrays on the computer monitor. I don't remember who this guy is. He's not Axel's surgeon, but he participated in the surgery. He's a very nice man, and had lots of questions for me about how I'm caring for Axel's pins, etc. Also, they haven't gotten many kids with DS who have active impingement of their spinal cord at the time of surgery, so he wanted to know if they could use Axel's xrays for teaching purposes.
So, if we're really lucky, we'll have no reason to contact Axel's surgeon before our appointment in August. And if we get our way, we'll have that halo off before Axel's birthday on August 13th. What a present for his first birthday in America!!!!
The first step is going through security. I am becoming less and less patient with TSA. They're either a pain in the neck and useless, or TOO helpful, which is also a pain. LOL I wish there were a happy medium! Having been on 23 flights in the past 15 months, I have become an expert at packing to go through security checkpoints. I wear slip-on shoes, no belts (learned that mistake a year ago. LOL) no jewelry, nothing in my pockets, and NO liquids if I can help it.
So Axel and I get to security at the Minneapolis airport, and I quickly disperse the items that need to go through the xray machine. For Axel and I, that meant 4 bins, plus the walker (it fits through the machine!) and a backpack. Then they take Axel through, and I have to go through the metal detector. I learned after our trip on May to ask if they could please wait to check Axel until I had collected my things and could focus all my attention there instead of trying to watch him AND my belongings at the same time. They said sure! In the seconds it took me to ask that, someone (I think a TSA agent) had unfolded the walker for Axel to use. THANK YOU! Except that we don't need it since he's in a wheelchair AND I don't know how to unfold it. LOL Someone else had shifted my things around, moving all the tubs into one pile, except that my laptop was in one of them...on the bottom...making it look empty. Anyway, I quickly shoved things into their appropriate places and lugged everything over to where Axel and a TSA agent were waiting. They checked him over, I put his shoes back on, and we were on our way.
We arrived to our gate at.the.far.end.of.the.airport with 30 minutes to spare before boarding. SCORE!!! I was sitting there sweating to death from the long walk, when I had a thought. "Did I get the laptop?" As I though that, an announcement came over the loud speaker. "Would the traveler who left a laptop at security station D please return for it." I unzipped the backpack...nope. No laptop.
Crap!
I asked the gate agent if I could leave the roller bag and backpack there while I RAN back to the other end of the airport. No dice!!!! Axel and I made the trip VERY fast, and arrived back at the gate, dripping with sweat, just as they were ready to pre-board Axel and I.
My good friend Colleen picked us up at the airport. I cannot thank her enough for the immense amount of help she's been to us the three times we've been to Philly so far. From picking us up at the airport to driving us to Ronald McDonald house. This time we stayed with her, and she dropped us off at the clinic Thursday morning on her way to work, THEN had to drop her little guy Nolan off and get herself to work. She has really gone out of her way for us, and we can't thank her enough!
So the clinic visit: It was GREAT!!! I really didn't have a way to explain to Axel where we were going on this trip. It was really cute when we pulled up in front of the clinic, and he touched his halo and started jabbering. I'm sure he thought he was here for another traumatic event, and that we'd duped him into it!
First, we checked in, and ran into Axel's surgeon, Dr. Samdani. He was really pleased to see how well Axel is getting around! Next went to the physical therapy department and got rid of the bulky wheelchair and walker. We have another wheelchair we had left with them in May that we'd be bringing home with us. It's a little too small for Axel now (it fit him just right in February!) but was good enough to get us home. Still, it was really nice to not have to be dragging the bulky stuff around!
Next we went to Xray where Axel had new pictures taken of his neck. I was anxious to see the new bone growth!
That done, we headed to the clinic to meet up with Axel's surgical team. They were all thrilled to see how well Axel was doing, AND how wonderful his pins look! You may remember that a few weeks ago Axel's pins were badly infected. I have to clarify something here. These "pins" are actually 1/4 inch SCREWS that are screwed 1/8 inch into Axel's skull, and each screw has 8 lbs per square inch on the skull. They NEVER come out except when the neurosurgeon removes them to take the halo off. That means Axel has not been able to have a bath since his surgery back on May 16th. Anyway, the pins now look great. A combination of 10 days of antibiotics (which ended a couple weeks ago) along with a new cleaning regimen, and things are looking perfect.
So, here is a picture of the computer screen with Axel's xrays displayed on it (you can click on it to make it bigger.) :
See how long those screws are in his neck? BLECH! See the balls at the head end of the screws? That is actually the bone graft. If you blow it up big, you can see there are shadows in it, and on the picture on the left you can see there are clearly balls of bone. When we go back in 6 weeks they should be grown together into one solid piece of bone.
And, the best news of all? When we go back in six weeks, Axel will be getting his halo off!!!
Actually, if he wasn't head banging in his sleep, he would have gotten it off at this visit, but since he's so rough on his body it's really not advisable right now. That's ok! We're all for erring on the side of caution! When he gets the halo off, he will have no muscle strength to hold up his head, so he'll be in a neck brace just like the one he had before surgery. This will stay on for about another three months.
Axel was pretty relieved to be leaving the clinic without having suffered one single painful event! I can't wait until mid August when I can tell him that he's going to get that thing off! The removal itself is a quick procedure, taking just a few minutes. Even so he will have an I.V. placed, and be sedated for the removal so he....AND THE MOM... are not so traumatized. I've heard from good friends that the halo removal is NOT FUN, so I'm glad they said he'd be sedated.
I love this picture of Axel looking at his xrays on the computer monitor. I don't remember who this guy is. He's not Axel's surgeon, but he participated in the surgery. He's a very nice man, and had lots of questions for me about how I'm caring for Axel's pins, etc. Also, they haven't gotten many kids with DS who have active impingement of their spinal cord at the time of surgery, so he wanted to know if they could use Axel's xrays for teaching purposes.
So, if we're really lucky, we'll have no reason to contact Axel's surgeon before our appointment in August. And if we get our way, we'll have that halo off before Axel's birthday on August 13th. What a present for his first birthday in America!!!!
Saturday, May 28, 2011
A Day in the Life
Today was the first warm, pleasant day in ages. Ok, it was only 1/2 a day because a small but severe storm blew in late afternoon. Still we were able to mow the jungle back yard that needed before we left for Philadelphia but it was just too wet. So it waited another two weeks, which we really debated paying someone to bale the stuff!
We were still able to get some play time in. Axel helped me plant some flowers, but I forgot to take pictures. It was pretty funny, because he really wasn't interested in having that dirt on his fingers. He did it though. Cuz he's a trooper.
When that was done, someone needed to clean up the mess! Axel LOVED the broom, even if it meant a near heart attack for both Dean and I. What I loved is the REAL Axel is back, giggling away! I just love his giggle. We have no idea exactly what he's giggling about, but this is his "trouble" giggle, which means in HIS mind he's doing something potentially naughty. LOL I think he's trying to bug Angela in some way, but the rest of us were clearly oblivious to it. I don't know if you can tell in the video, but there are a couple times when he starts tipping backward. Then, just two seconds after I stopped recording, he went stumbling foward several feet, with me lunging from behind hoping to get hold of his shirt. (you know, the velcro one that would have given way!) Dean? Didn't even flinch. Yeah, that was the end of sweeping.
Then came snack time, and chillax'in! Angela is just getting over yet another sinus infection (I swear this is like the 10th...or 100th... she's had since November!) so her face is kind of a mess. But hey, she was OUTSIDE, which is very difficult to get this teenager to do sometimes!
How about some soccer? After the experience with the broom earlier, I wasn't about to let Axel mess around with running and stuff. Nope, not till that halo comes off! Don't you just love his laugh? He's trying to get the dogs with the ball. LOL But Angela and Axel LOVE kicking the ball with each other, so Axel wasn't about to let a little halo stop him.
Weather Axel realized it or not, he was tired after all this. After all, he did just have major surgery less than two weeks ago! How well I remember overdoing things myself! It was time for mom to help the little boy find a pillow and a blanket, and settle in for a nap. I was *really* tempted to join him, but a storm was coming in and there were a couple things to finish outside. I managed to get the strawberry bed weeded and play a little soccer with Angela before the tornado sirens went off.
When the day was over, it was time for one of our new evening rituals. Actually, this happens twice a day now. Morning and night, we have to clean Axel's pins. Dean has yet to do this, because he says it creeps him out. Really? What if it creeped ME out too? Then who would do it? Something tells me it's time for Dean to clean some pins. Anyway, Axel gets really chatty while we're doing this and I've been trying to catch him on video, but Mr. Smarty Pants stops talking when he knows the camera is going. Tonight was no different, but I still tricked him to talking a little bit.
So that's a day in our life. What did you do today? Do tell!
We were still able to get some play time in. Axel helped me plant some flowers, but I forgot to take pictures. It was pretty funny, because he really wasn't interested in having that dirt on his fingers. He did it though. Cuz he's a trooper.
When that was done, someone needed to clean up the mess! Axel LOVED the broom, even if it meant a near heart attack for both Dean and I. What I loved is the REAL Axel is back, giggling away! I just love his giggle. We have no idea exactly what he's giggling about, but this is his "trouble" giggle, which means in HIS mind he's doing something potentially naughty. LOL I think he's trying to bug Angela in some way, but the rest of us were clearly oblivious to it. I don't know if you can tell in the video, but there are a couple times when he starts tipping backward. Then, just two seconds after I stopped recording, he went stumbling foward several feet, with me lunging from behind hoping to get hold of his shirt. (you know, the velcro one that would have given way!) Dean? Didn't even flinch. Yeah, that was the end of sweeping.
Then came snack time, and chillax'in! Angela is just getting over yet another sinus infection (I swear this is like the 10th...or 100th... she's had since November!) so her face is kind of a mess. But hey, she was OUTSIDE, which is very difficult to get this teenager to do sometimes!
How about some soccer? After the experience with the broom earlier, I wasn't about to let Axel mess around with running and stuff. Nope, not till that halo comes off! Don't you just love his laugh? He's trying to get the dogs with the ball. LOL But Angela and Axel LOVE kicking the ball with each other, so Axel wasn't about to let a little halo stop him.
Weather Axel realized it or not, he was tired after all this. After all, he did just have major surgery less than two weeks ago! How well I remember overdoing things myself! It was time for mom to help the little boy find a pillow and a blanket, and settle in for a nap. I was *really* tempted to join him, but a storm was coming in and there were a couple things to finish outside. I managed to get the strawberry bed weeded and play a little soccer with Angela before the tornado sirens went off.
When the day was over, it was time for one of our new evening rituals. Actually, this happens twice a day now. Morning and night, we have to clean Axel's pins. Dean has yet to do this, because he says it creeps him out. Really? What if it creeped ME out too? Then who would do it? Something tells me it's time for Dean to clean some pins. Anyway, Axel gets really chatty while we're doing this and I've been trying to catch him on video, but Mr. Smarty Pants stops talking when he knows the camera is going. Tonight was no different, but I still tricked him to talking a little bit.
So that's a day in our life. What did you do today? Do tell!
Axel Loves Rachel
*Note* For those who are new to this blog, Axel was adopted from Serbia on December 9th, 2010. When I took custody of him on December 3rd he was completely non-verbal and had no way to communicate. Nothing. At 10 years old he could not tell someone he wanted a drink, or to eat, or that he liked one food over another. He was communication starved!
I started signing with Axel the day I took custody of him, and within the first 24 hours he learned that he could tell me he wanted a drink, and he could even choose between apple or grape juice. Since Axel discovered the joy of communication, his world has blossomed! Along with being a former ASL interpreter, while still in Serbia I introduced Axel to Signing Time, which was the beginning of his love affair with Rachel!
....................................................................................................................
So go back to Thursday, May 19th, when I got an email from Axel's teacher saying there was a Signing Time event in our area. Rachel, LIVE, for the kids to enjoy. She was coming Friday, May 27th.
Awwww man! Axel and I were scheduled to fly home that day and there was just no way I could turn around from a day of traveling, and drag him to a concert. I was bummed for Axel, even though he didn't know he would be missing anything.
But then we came home a week early! But I still couldn't order tickets yet. I mean, he just had major surgery, I really needed to see how he was feeling. Then by Tuesday I knew that by Friday he'd be ok. I bought our tickets. I WAS EXCITED! I love being able to surprise my kids with something they love!
But the boy couldn't go shirtless! I took Axel out earlier in the day and bought some cheap t-shirts at Target that I could attempt to modify with scissors and velcro. I thought this "American" shirt was very appropriate. ;-) Axel loved helping me with this project, and always made sure I had scissors, or the measuring tape, or something in my hand before I needed it. LOL (Later today we have three more shirts to do. ) Look at that smile! He was happy to have clothes too.
Then we got in the car to drive to our special destination. Axel had no idea where we were going, and I don't know that he would have understood the English if I'd told him. He was just happy to be in the car. For those of you who know the cities, I had to make it from my place, all the way across the city to Maple Grove in rush hour HOLIDAY traffic. You know the "up north" mass exodus of Memorial weekend?? UGH! The concert was to start at 6:00, but we had general admission seats so I wanted to be there by 5:00. We left the house at 3:30 and made it at 5:10. YUCK driving!
So we get in there and we're the first ones in line. Axel had a program in his hands, holding it in front of his face. If he'd moved it for a second he would have caught sight of Rachel and Leah giving those who'd purchased VIP tickets their pre-show and meet and greet. LOL But he didn't...he just thought I'd given him something with signing time stuff on it.
Then someone came out from the sactuary (it was at a church) and saw that Axel was in his wheelchair. She took down our names and arranged for wheelchair seating. We were allowed to go in a few minutes ahead of the crowd. So far we were the only wheelchair family there. Imagine my surprise to find our seats right smack front and center!!!!! Oh, I was dying to see Axel's expression when Rachel finally came out! For now he was just thrilled to see all the Signing Time logos. LOL
And then the Singing Time theme song started, and out came RACHEL!!!! I turned on my video to catch Axel's face. He was EXPRESSIONLESS! Why? Because he was in SHOCK! You mean Rachel is REAL????
Look how how old Leah is now! She's 14!!! Rachel said Leah is starting to get a little too old for this stuff. LOL But Leah was a good sport. Did you know Signing Time has been around for 10 years? I remember when it started being annoyed and skeptical of it, because any signing videos I'd seen for kids at that point had a lot of regional signs (signs used only in certain parts of the country) or were really Signed English. But Signing Time is different! Although there are a few regional signs once in awhile, even though Rachel speaks in English, she signs in ASL word order. This is a tough skill to learn (one that I used to be good at, by the way. ;-)
The first song that she did was the Rainbow Song. She picked Axel to sign "red", and up to the state he went. Notice he's still not smiling??? LOL At the end of the song Leah gave him him a bracelet and tattoo. OH...Axel was SO HAPPY Leah TOUCHED HIM! Also, during the video he starts signing "Hopkins" (the frog) because he REALLY wanted to see Hopkins! LOL
Ok, I don't know these girls, but maybe their mother will stumble across my blog, because these are just great pictures of her girls on stage!
When the show was done, they told everyone to file around and make a line for the meet and greet. I had Axel out of his chair at that point (he was actually in the adaptive stroller, which has him sitting a little funny, which causes the vest from the halo to pinch his legs.) I was going to load him up in the chair again and the woman in charge said, "No! The kids in chairs (there were 3 of us now) can stay right there. Rachel will do a meet and greet with them right here." So we go to take his picture, and do you notice he's STILL not smiling??? He's totally blank faced! He was just completely STUNNED by this whole event. Of course, as soon as we got in the car he's laughing and chattering about Rachel and Leah, and Hopkins, and I heard "Signing Time" 5,000 times from the back seat! HA!!!!
I started signing with Axel the day I took custody of him, and within the first 24 hours he learned that he could tell me he wanted a drink, and he could even choose between apple or grape juice. Since Axel discovered the joy of communication, his world has blossomed! Along with being a former ASL interpreter, while still in Serbia I introduced Axel to Signing Time, which was the beginning of his love affair with Rachel!
....................................................................................................................
So go back to Thursday, May 19th, when I got an email from Axel's teacher saying there was a Signing Time event in our area. Rachel, LIVE, for the kids to enjoy. She was coming Friday, May 27th.
Awwww man! Axel and I were scheduled to fly home that day and there was just no way I could turn around from a day of traveling, and drag him to a concert. I was bummed for Axel, even though he didn't know he would be missing anything.
But then we came home a week early! But I still couldn't order tickets yet. I mean, he just had major surgery, I really needed to see how he was feeling. Then by Tuesday I knew that by Friday he'd be ok. I bought our tickets. I WAS EXCITED! I love being able to surprise my kids with something they love!
But the boy couldn't go shirtless! I took Axel out earlier in the day and bought some cheap t-shirts at Target that I could attempt to modify with scissors and velcro. I thought this "American" shirt was very appropriate. ;-) Axel loved helping me with this project, and always made sure I had scissors, or the measuring tape, or something in my hand before I needed it. LOL (Later today we have three more shirts to do. ) Look at that smile! He was happy to have clothes too.
Then we got in the car to drive to our special destination. Axel had no idea where we were going, and I don't know that he would have understood the English if I'd told him. He was just happy to be in the car. For those of you who know the cities, I had to make it from my place, all the way across the city to Maple Grove in rush hour HOLIDAY traffic. You know the "up north" mass exodus of Memorial weekend?? UGH! The concert was to start at 6:00, but we had general admission seats so I wanted to be there by 5:00. We left the house at 3:30 and made it at 5:10. YUCK driving!
So we get in there and we're the first ones in line. Axel had a program in his hands, holding it in front of his face. If he'd moved it for a second he would have caught sight of Rachel and Leah giving those who'd purchased VIP tickets their pre-show and meet and greet. LOL But he didn't...he just thought I'd given him something with signing time stuff on it.
Then someone came out from the sactuary (it was at a church) and saw that Axel was in his wheelchair. She took down our names and arranged for wheelchair seating. We were allowed to go in a few minutes ahead of the crowd. So far we were the only wheelchair family there. Imagine my surprise to find our seats right smack front and center!!!!! Oh, I was dying to see Axel's expression when Rachel finally came out! For now he was just thrilled to see all the Signing Time logos. LOL
And then the Singing Time theme song started, and out came RACHEL!!!! I turned on my video to catch Axel's face. He was EXPRESSIONLESS! Why? Because he was in SHOCK! You mean Rachel is REAL????
Look how how old Leah is now! She's 14!!! Rachel said Leah is starting to get a little too old for this stuff. LOL But Leah was a good sport. Did you know Signing Time has been around for 10 years? I remember when it started being annoyed and skeptical of it, because any signing videos I'd seen for kids at that point had a lot of regional signs (signs used only in certain parts of the country) or were really Signed English. But Signing Time is different! Although there are a few regional signs once in awhile, even though Rachel speaks in English, she signs in ASL word order. This is a tough skill to learn (one that I used to be good at, by the way. ;-)
The first song that she did was the Rainbow Song. She picked Axel to sign "red", and up to the state he went. Notice he's still not smiling??? LOL At the end of the song Leah gave him him a bracelet and tattoo. OH...Axel was SO HAPPY Leah TOUCHED HIM! Also, during the video he starts signing "Hopkins" (the frog) because he REALLY wanted to see Hopkins! LOL
Ok, I don't know these girls, but maybe their mother will stumble across my blog, because these are just great pictures of her girls on stage!
Also, for those who have little ones who will be working on potty training soon, Rachel has a special project in the works! She has an APP that will be coming out, where you can play a little video (or audio, not sure) of Rachel congratulating your child on going potty on the big boy/girl potty, or wearing big kid underwear, and stuff like that. They don't know when it will be released yet, but watch for it!
When the show was done, they told everyone to file around and make a line for the meet and greet. I had Axel out of his chair at that point (he was actually in the adaptive stroller, which has him sitting a little funny, which causes the vest from the halo to pinch his legs.) I was going to load him up in the chair again and the woman in charge said, "No! The kids in chairs (there were 3 of us now) can stay right there. Rachel will do a meet and greet with them right here." So we go to take his picture, and do you notice he's STILL not smiling??? He's totally blank faced! He was just completely STUNNED by this whole event. Of course, as soon as we got in the car he's laughing and chattering about Rachel and Leah, and Hopkins, and I heard "Signing Time" 5,000 times from the back seat! HA!!!!
After the show I spoke with the woman who put this all together. She did it all ALONE! There was no advertising, only word of mouth. This was a lot to put together! I volunteered to help her with next year, and while I'm at it, I might as well become a Signing Time Instructor, huh? Besides...Rachel said there is a convention in Vegas in July. LOL
Friday, May 27, 2011
LOOK who has CLOTHES
Axel has been shirtless for two weeks. Look who has a new shirt to wear, just in time for our big night!
Thursday, May 26, 2011
Sleeping
We've been trying to get insurance to cover a bed rail for Axel. The regular kid ones, that slip under the mattress, do not seem sturdy enough, or heavy enough, to actually stop him if Axel's rolling. Insurance said it's not "medically necessary", so they won't cover it. (if not medically necessary, why do medical supply stores carry them????) Apparently you're not able to roll around with a halo on.
So this morning this is how I found him. Tell me how in the WORLD does a person sleep like this???? (the red you see in the bottom of the picture is the kids desk I have pushed up against the bed for now. But it's VERY light.)
So this morning this is how I found him. Tell me how in the WORLD does a person sleep like this???? (the red you see in the bottom of the picture is the kids desk I have pushed up against the bed for now. But it's VERY light.)
Wednesday, May 25, 2011
Finding the Balance
Finding the Balance - Axel's balance that is! He's working hard on getting mobile again. He can now walk independently, but still needs someone RIGHT there should he loose his center of balance and start tipping over. This is especially true with cornering! LOL
Two days ago he sat in the little play chair and drew on the easel. This is the lowest he's gotten to the floor since his hip is still pretty sore. It's also the first time he's drawn a face without someone getting him started with a circle. After I put the camera away he added ears, hair, legs and arms. Gotta love the unibrow! LOL
Yesterday he played the Gone Fishing. He LOVES this game! It's pretty funny to watch his mouth as he's catching the fish. Anyway, having this game has been helpful in getting him to stand for longer periods of time, all while working on balancing and reaching. Even though I stand right there with him all makes Dean very nervous though. (if you watch closely, he signs the color of the fish he's going to catch next. Everything he does is always very purposeful.)
Today was a first: First time playing on the floor. He actually got there pretty easily considering how sore his hip has been, but had a difficult time getting up OFF the floor. We had to motor plan this together. ;-) Anyway, first he built his usual tower of blocks, then took it all apart and made a little more complicated tower. He has really missed his blocks! I think when his birthday rolls around real legos are in order! (Good thing we have the Lego store at the Mall of America just 10 minutes away.)
As you can see, he plays very carefully with his blocks. He's very intentional with them and when he's building something more than just a tower, he puts a lot of thought into which block he's going to use next.
Two days ago he sat in the little play chair and drew on the easel. This is the lowest he's gotten to the floor since his hip is still pretty sore. It's also the first time he's drawn a face without someone getting him started with a circle. After I put the camera away he added ears, hair, legs and arms. Gotta love the unibrow! LOL
Yesterday he played the Gone Fishing. He LOVES this game! It's pretty funny to watch his mouth as he's catching the fish. Anyway, having this game has been helpful in getting him to stand for longer periods of time, all while working on balancing and reaching. Even though I stand right there with him all makes Dean very nervous though. (if you watch closely, he signs the color of the fish he's going to catch next. Everything he does is always very purposeful.)
Today was a first: First time playing on the floor. He actually got there pretty easily considering how sore his hip has been, but had a difficult time getting up OFF the floor. We had to motor plan this together. ;-) Anyway, first he built his usual tower of blocks, then took it all apart and made a little more complicated tower. He has really missed his blocks! I think when his birthday rolls around real legos are in order! (Good thing we have the Lego store at the Mall of America just 10 minutes away.)
As you can see, he plays very carefully with his blocks. He's very intentional with them and when he's building something more than just a tower, he puts a lot of thought into which block he's going to use next.
Monday, May 23, 2011
Halo Clothes
Part of my detailed halo posts is for other parents who are going to be dealing with the same issues we are now facing. I've only been able to find a few websites. The people I know personally who've had to do the fusion surgery for their kids with DS, thier children are much younger and smaller, so we have a little different situation. Each of our kids have their own unique circumstances to deal with.
Ok, we have tried a couple different options for shirts for Axel and the DO NOT work without alterations being made to them. Because of the width and positioning of the uprights, button-up shirts don't work. The one he wore home we cut at the shoulder and it was ripped to shreds by the bolts by the time we arrived in Minneapolis.
There are a few websites I've found that have patterns for altering shirts. One is by Capital Health, and another more detailed one by the University of Iowa Department of Orthopedics. And since it's summer time, muscle shirts cut at the top seam with velcro placed there would work as well.
I am off to find a sewing machine, so in my spare time I can alter some shirts! LOL
Ok, we have tried a couple different options for shirts for Axel and the DO NOT work without alterations being made to them. Because of the width and positioning of the uprights, button-up shirts don't work. The one he wore home we cut at the shoulder and it was ripped to shreds by the bolts by the time we arrived in Minneapolis.
There are a few websites I've found that have patterns for altering shirts. One is by Capital Health, and another more detailed one by the University of Iowa Department of Orthopedics. And since it's summer time, muscle shirts cut at the top seam with velcro placed there would work as well.
I am off to find a sewing machine, so in my spare time I can alter some shirts! LOL
My New Workout Routine
I have a new workout routine, and it is called "Axel in a Halo". Here's how it goes:
First, get bowl full of bath water for Axel, and set up the bath station in his bedroom.
The next excercise is getting Axel out of bed. (When he's soaking wet because he slept twelve hours. Could be the valium we gave him last night?? LOL) First, roll the child to his side, then lift him to a sitting position while simultaneously getting his feet over the edge of the bed. Axel knows what is supposed to happen during this excercise, and is getting better and pushing himself up off the bed. Next step is to scoot him forward and to a standing position.
Next, remove the soaked pajama pants. This involves Axel hanging onto my shoulders while I bend down to get the wet pants off. Only sometimes forgets to hang on and starts signing Signing Time songs (which means he's using his hands to sign instead of hang on!) and since he's so top heavy and still VERY off balance, he tips over. Tipping over with the halo on is BAD.
Now move him to the bathroom. When he first gets up in the morning his hip is stiff and painful, but it gets better within a couple of hours. Other than that he is now able to support his weight, he just has no balance, nor sense of space so knocking the halo on door frames is always an issue.
Getting him on the toilet involves lifting him onto the toilet. This morning was a little more tricky because I needed to leave him somewhere while I ran to get his bed ready for a sponge bath. He seemed to be balancing o.k. while on the toilet, but I wasn't 100% sure he wouldn't break out in song again. I stressed to him in my "this is very important" voice to "hang on tight!", and ran to get his bed ready. (stip off wet sheet and blankets, lay out large towel on the bed) It's just barely out of line of sight from the bathroom.
Pottying done, time to walk him back to the bed, sit him down, lay him down on his side, then on his back. Get him all washed up. NO getting the vest wet allowed. Thankfully this bedwetting incident didn't get pee on it. This is going to be a long several months! Washed off the top of his head too. Get underwear and new pajama pants on him, but not pulled up. Jeans are not comfortable for him yet since he has a large incision on the back of his hip. Which got wet, by the way.
Time to roll him over to his side again, sit up, then off the bed, and repeat the balancing act while I pull up his pants. I don't think he'll ever be able to do that himself as he'll tip right over!
Now we walk to the dining room. I have a choice of a kitchen chair which has a wood seat, or a dining room chair which is fabric. The dining room chairs have a knob on top which kind of catch the halo should he start to tip over. I get his breakfast (blueberry pancakes today!) and get it set so he can eat himself. My friend is picking up a tray and a cup I can use a straw with so he can be independent in this area.
One he's done eating, it's time to clean the halo pins. This is the gross part of the job. There are eight pins, and it takes four q-tips (the hospital kind) per pin, twice a day. That's 100 qtips per day. Axel does NOT like this part of the day. He cries real tears most of the time. The pin sites are red at all, and do not appear sore. I think he just doesn't like that he can't see what I'm doing. His job is to hold a tissue and catch any drips so they don't go in his eyes. He takes this job very seriously! LOL
Now I can move him to the couch to watch T.V. for a bit. (I'll be glad when his balance improves enough that he can play on the floor a bit!)
Total time elapsed: 90 minutes.
I'm ready for a nap already, except that I'm looking around at all the unpacking that needs to be done. LOL
First, get bowl full of bath water for Axel, and set up the bath station in his bedroom.
The next excercise is getting Axel out of bed. (When he's soaking wet because he slept twelve hours. Could be the valium we gave him last night?? LOL) First, roll the child to his side, then lift him to a sitting position while simultaneously getting his feet over the edge of the bed. Axel knows what is supposed to happen during this excercise, and is getting better and pushing himself up off the bed. Next step is to scoot him forward and to a standing position.
Next, remove the soaked pajama pants. This involves Axel hanging onto my shoulders while I bend down to get the wet pants off. Only sometimes forgets to hang on and starts signing Signing Time songs (which means he's using his hands to sign instead of hang on!) and since he's so top heavy and still VERY off balance, he tips over. Tipping over with the halo on is BAD.
Now move him to the bathroom. When he first gets up in the morning his hip is stiff and painful, but it gets better within a couple of hours. Other than that he is now able to support his weight, he just has no balance, nor sense of space so knocking the halo on door frames is always an issue.
Getting him on the toilet involves lifting him onto the toilet. This morning was a little more tricky because I needed to leave him somewhere while I ran to get his bed ready for a sponge bath. He seemed to be balancing o.k. while on the toilet, but I wasn't 100% sure he wouldn't break out in song again. I stressed to him in my "this is very important" voice to "hang on tight!", and ran to get his bed ready. (stip off wet sheet and blankets, lay out large towel on the bed) It's just barely out of line of sight from the bathroom.
Pottying done, time to walk him back to the bed, sit him down, lay him down on his side, then on his back. Get him all washed up. NO getting the vest wet allowed. Thankfully this bedwetting incident didn't get pee on it. This is going to be a long several months! Washed off the top of his head too. Get underwear and new pajama pants on him, but not pulled up. Jeans are not comfortable for him yet since he has a large incision on the back of his hip. Which got wet, by the way.
Time to roll him over to his side again, sit up, then off the bed, and repeat the balancing act while I pull up his pants. I don't think he'll ever be able to do that himself as he'll tip right over!
Now we walk to the dining room. I have a choice of a kitchen chair which has a wood seat, or a dining room chair which is fabric. The dining room chairs have a knob on top which kind of catch the halo should he start to tip over. I get his breakfast (blueberry pancakes today!) and get it set so he can eat himself. My friend is picking up a tray and a cup I can use a straw with so he can be independent in this area.
One he's done eating, it's time to clean the halo pins. This is the gross part of the job. There are eight pins, and it takes four q-tips (the hospital kind) per pin, twice a day. That's 100 qtips per day. Axel does NOT like this part of the day. He cries real tears most of the time. The pin sites are red at all, and do not appear sore. I think he just doesn't like that he can't see what I'm doing. His job is to hold a tissue and catch any drips so they don't go in his eyes. He takes this job very seriously! LOL
Now I can move him to the couch to watch T.V. for a bit. (I'll be glad when his balance improves enough that he can play on the floor a bit!)
Total time elapsed: 90 minutes.
I'm ready for a nap already, except that I'm looking around at all the unpacking that needs to be done. LOL
Sunday, May 22, 2011
HOME!
We are HOME and even more importantly, we are NAPPED! Well, Axel and I are anyway. ;-)
I have nothing but high praises to God for not only getting us all on the same flight, but getting Axel and I in first class! God is So GOOD!
Axel cried about 1/2 the flight. Sobbing tears kind of crying, which is very unlike him. He was grabbing his hip, and it was hard to keep him sitting in the seat because he kept arching his back, making his butt slide out from underneath him. My guess his he was having spasms in his hip, making him absolutely miserable. We had given him valium right before the flight, which finally kicked in about 3/4 of the way. So, by the time we got home he was quite goofy...headed the direction of naughty...which landed him in bed for a nap.
That nap had us making a list of things we need. #1 being a bedrail, #2 is a wedge for his bed. We put him on pillows and stuff for his nap put he's just not very comfortable.
Here's a video of him eating dinner tonight. As you can see, his field of vision is very limited now. (it will improve a little bit as his pain lessons and he learns to turn his body) But looking down is not doable. If his OT is reading this, I need something better than this cake pan to raise up his plate, and maybe some dycem to keep his plate in place better?
So, we are on to new things now. This week will be spent improving his balance and increasing his ability to walk independently. It will come just takes time. The bigger they are, the more difficult it is to overcome the top-heaviness created by the halo. Axel's surgeon told us that adults sometimes take up to two weeks to even be upright, and a couple more to walk independently without the aid of a person or a walker. I have a video of him walking yesterday, but the nurse didn't see that I was recording (something about holding the camera up in front of my face made it tough to see this) and started asking me questions about our insurance.
I have nothing but high praises to God for not only getting us all on the same flight, but getting Axel and I in first class! God is So GOOD!
Axel cried about 1/2 the flight. Sobbing tears kind of crying, which is very unlike him. He was grabbing his hip, and it was hard to keep him sitting in the seat because he kept arching his back, making his butt slide out from underneath him. My guess his he was having spasms in his hip, making him absolutely miserable. We had given him valium right before the flight, which finally kicked in about 3/4 of the way. So, by the time we got home he was quite goofy...headed the direction of naughty...which landed him in bed for a nap.
That nap had us making a list of things we need. #1 being a bedrail, #2 is a wedge for his bed. We put him on pillows and stuff for his nap put he's just not very comfortable.
Here's a video of him eating dinner tonight. As you can see, his field of vision is very limited now. (it will improve a little bit as his pain lessons and he learns to turn his body) But looking down is not doable. If his OT is reading this, I need something better than this cake pan to raise up his plate, and maybe some dycem to keep his plate in place better?
So, we are on to new things now. This week will be spent improving his balance and increasing his ability to walk independently. It will come just takes time. The bigger they are, the more difficult it is to overcome the top-heaviness created by the halo. Axel's surgeon told us that adults sometimes take up to two weeks to even be upright, and a couple more to walk independently without the aid of a person or a walker. I have a video of him walking yesterday, but the nurse didn't see that I was recording (something about holding the camera up in front of my face made it tough to see this) and started asking me questions about our insurance.
Saturday, May 21, 2011
Logistical planning
After going over what it would take to pack up our stuff, get to the hospital, discharge Axel, re-load all our luggage in a different cab, then get to the airport, all before 6:30 a.m. we changed plans.
We just busted out of the hospital! Axel is now back at Ronald McDonald house with us, and we'll leave for the airport from here in the morning. WOOT WOOT!
We just busted out of the hospital! Axel is now back at Ronald McDonald house with us, and we'll leave for the airport from here in the morning. WOOT WOOT!
Friday, May 20, 2011
Friday
I'm beat.
Downright beat. And I didn't even take a single picture or video today!
We arrived at the hospital at 8:00, just in time to give Axel breakfast and get him up to use the bathroom. Then the resident came in to make the necessary adjustments to Axel's halo. That needed to wait until he was able to stand and sit upright for a couple minutes at a time.
Then it was time for PT, and we made a loop of the 5th floor again. (that's 280 feet for anyone who wants to know.) Then we brought him down to the therapy play area where we could practice stepping up and down curbs since we will have to maneuver two steps to get in and out of our house. Axel was a little quiet during this time, which is about our only indicator that he's in pain. We brought him back to bed, and it was time for lunch so he ate and then took a rest.
When he woke up the PT was back. Our biggest concern is my back since I messed it up doing the very first transfer with him back on Tuesday. When we go home on Friday next week, it will be me alone with Axel, having to get in and out of cabs, in and out of the plane, etc. That, and I'll be alone with him every day so I need to be able to do transfers in and out of bed as well. There is a lot, and with the halo on he weighs about 70 lbs.
The therapy play area has real car (though it's a two door.) and we practiced doing transfers in and out of the car. I was able to do it ok, but there is a lot to think about, like the fact the bars from the halo hit the roof of the car as he's getting in if I don't bend him over at exactly the right time, while at the same time making sure his butt is on the seat, but that he's leaned back far enough to REACH the seat with his butt!
We transferred in and out of the car twice, and while I was buckling him back in the wheelchair, I lost it. I started crying and I didn't even know why. I think it was the combination of being tired, the thought that I'll be completely on my own doing this, and just all there is to think about when traveling with a child in general, then add in that I'll have Axel, luggage, wheelchair transfers, his pain, what if he has to go to the bathroom on the plane, etc. etc. and it was all just too much for that one moment. I hate when I'm crying and I can't even talk well enough to explain WHY I'm crying because really, I DON'T KNOW! And I asked God to just make me comfortable with all of this because my kid is depending upon me to manage it all safely....ALONE!
Half hour later, we were back in Axel's room when his surgeon came in to do rounds. He looked at Axel's surgical site and removed the bandages from his hip. It was the first time we've been able to see the hip wound. It looked great, and he said Axel is healing FAR faster than expected. He didn't see any reason for us to visit the clinic next Thursday unless there was some unusual problem, so.....we are free to FLY HOME! In a whirlwind of activity, with about five different people working at once, we were able to get my and Axel's flights changed so we can fly home with Dean and Angela on Sunday! We were able to get prescriptions for pain meds sorted out and all the other little details. The only one we're left to figure out is the wheelchair which....please God!....will be taken care of tomorrow!
So, the plan is to pack up everything tomorrow night, then arrive at the hospital about 4:30 Sunday morning, get him discharged out (paperwork is going to be prepared Saturday night) and be to the airport by 6:30 for our 8:00 a.m. flight. This puts us on the ground at home at 10:30 a.m.
Thank you God, for arranging all of this! I know it's because it really is too much for just one person to get him home by plane, and God knew I really needed Dean's support in doing it. Dean and I are a great team. Several times today staff told us how well we work together and communicate with each other. I know part of their job is to encourage us as parents, but it worked. It really helps that we have God guiding us, and an amazing little boy who we love dearly!
Downright beat. And I didn't even take a single picture or video today!
We arrived at the hospital at 8:00, just in time to give Axel breakfast and get him up to use the bathroom. Then the resident came in to make the necessary adjustments to Axel's halo. That needed to wait until he was able to stand and sit upright for a couple minutes at a time.
Then it was time for PT, and we made a loop of the 5th floor again. (that's 280 feet for anyone who wants to know.) Then we brought him down to the therapy play area where we could practice stepping up and down curbs since we will have to maneuver two steps to get in and out of our house. Axel was a little quiet during this time, which is about our only indicator that he's in pain. We brought him back to bed, and it was time for lunch so he ate and then took a rest.
When he woke up the PT was back. Our biggest concern is my back since I messed it up doing the very first transfer with him back on Tuesday. When we go home on Friday next week, it will be me alone with Axel, having to get in and out of cabs, in and out of the plane, etc. That, and I'll be alone with him every day so I need to be able to do transfers in and out of bed as well. There is a lot, and with the halo on he weighs about 70 lbs.
The therapy play area has real car (though it's a two door.) and we practiced doing transfers in and out of the car. I was able to do it ok, but there is a lot to think about, like the fact the bars from the halo hit the roof of the car as he's getting in if I don't bend him over at exactly the right time, while at the same time making sure his butt is on the seat, but that he's leaned back far enough to REACH the seat with his butt!
We transferred in and out of the car twice, and while I was buckling him back in the wheelchair, I lost it. I started crying and I didn't even know why. I think it was the combination of being tired, the thought that I'll be completely on my own doing this, and just all there is to think about when traveling with a child in general, then add in that I'll have Axel, luggage, wheelchair transfers, his pain, what if he has to go to the bathroom on the plane, etc. etc. and it was all just too much for that one moment. I hate when I'm crying and I can't even talk well enough to explain WHY I'm crying because really, I DON'T KNOW! And I asked God to just make me comfortable with all of this because my kid is depending upon me to manage it all safely....ALONE!
Half hour later, we were back in Axel's room when his surgeon came in to do rounds. He looked at Axel's surgical site and removed the bandages from his hip. It was the first time we've been able to see the hip wound. It looked great, and he said Axel is healing FAR faster than expected. He didn't see any reason for us to visit the clinic next Thursday unless there was some unusual problem, so.....we are free to FLY HOME! In a whirlwind of activity, with about five different people working at once, we were able to get my and Axel's flights changed so we can fly home with Dean and Angela on Sunday! We were able to get prescriptions for pain meds sorted out and all the other little details. The only one we're left to figure out is the wheelchair which....please God!....will be taken care of tomorrow!
So, the plan is to pack up everything tomorrow night, then arrive at the hospital about 4:30 Sunday morning, get him discharged out (paperwork is going to be prepared Saturday night) and be to the airport by 6:30 for our 8:00 a.m. flight. This puts us on the ground at home at 10:30 a.m.
Thank you God, for arranging all of this! I know it's because it really is too much for just one person to get him home by plane, and God knew I really needed Dean's support in doing it. Dean and I are a great team. Several times today staff told us how well we work together and communicate with each other. I know part of their job is to encourage us as parents, but it worked. It really helps that we have God guiding us, and an amazing little boy who we love dearly!
The end of a very long day
Just like today, this update may be long, but it ends good. ;-)
I'm not really sure where "Yesterday" ended and "Today" started. I guess logically one would say midnight, but somehow it was all just one long day. Since we are really pushing fluids into Axel right now, our schedule completely revolves upon the next time he needs to get to the bathroom, and weather or not he needs to poop. Since getting him to the bathroom is back-breaking work, it's important to get him up and moving on his own as quickly as possible without pushing him too fast. It's a very fine line to dance! Needless to say, sleeping at the hospital isn't really conducive to parental rest when it takes three people to get him to the toilet, and it includes much screaming and yelling.
I wish I had a video of a bathroom run, but I can't do that and be one of the three people it takes to get him there. The halo is only supposed to be about 7 lbs, but since it throws off the center of balance, making the person top heavy, you're also supporting their entire upper body which is FORCING itself forward. So for Axel, that's about 25-30 lbs that we're struggling to move forward yet keep upright while not getting impaled with the pins or posts. Once we get to the bathroom
The next thing I know it was 8:00 in the morning and the surgeon (and his entourage) was with him. I was snoring on the roll-away bed. Lovely. Pretty sure I was drooling too. And you should see my hair when I wake up.
Dr. Samdani is very impressed with how quickly Axel is progressing, and I have to agree. Once that visit was done it was time to get Axel to the toilet...again...only this time he must have listened to what the Dr. said about how well he was doing, and he did GREAT walking to the bathroom. Still with 3 people, but with much less screaming and crying.
That done, we got Axel into his chair and went down to the front lobby to wait for Papa and Angela to come. I wish my battery hadn't died on my camera! I could have shared with you the first belly laugh we've seen since Monday.
Later in the day it was time for PT. Since kids are really top heavy when they get their halos on, they have to re-learn how to stand up straight, and the older the kid the longer this takes. The little kids do it pretty quickly, the big kids try to overcompensate, etc. Anyway, when PT Mark came the first time he brought with him a walker which helped, but Axel was still really pitched forward. Later in the day he brought a reverse walker. WOW! Axel stood right up, nice and tall! He walked the 10 feet to bathroom without any complaint. When we sat him up I was able to get a picture of his fusion incision. His hip incision is kind of underneath the vest and hard to see. (which makes keeping it clean really easy. NOT!)
Angela had spent the entire morning wheeling Axel's smaller wheelchair around and around the 5th floor, and Axel had been up a couple of times and stressed out by various things, so by that time it was 2:00 and everyone was tired. It was time for a family nap! Axel took the bed, Angela took his reclining wheelchair, I took the roll-away, and Dean found a couch somewhere in an empty playroom. Angela wasn't really excited about taking a nap, but all I had to do was turn on the T.V., turn off the lights, and out she went! LOL We all slept for almost 2 hours!
One of the girls on the floor had a surprise birthday party yesterday. We all went down to have pizza and cake, but Axel was still sleeping so he missed out. But, the party was a pirate theme, and we brought him stuff! Last night Dean, Angela and I all slept at Ronald McDonald house, so this is how we left the pirate last night. LOL Terri, if you're reading, do you see the chain of fiddles you sent him? His favorite is the barrel of monkeys to shake!
Today I'll try to get a video of him walking. He'll be discharged somewhere between tomorrow and Monday. Since Dean and Angela are leaving Sunday, I have to be able to do transfers with him myself.
I'm not really sure where "Yesterday" ended and "Today" started. I guess logically one would say midnight, but somehow it was all just one long day. Since we are really pushing fluids into Axel right now, our schedule completely revolves upon the next time he needs to get to the bathroom, and weather or not he needs to poop. Since getting him to the bathroom is back-breaking work, it's important to get him up and moving on his own as quickly as possible without pushing him too fast. It's a very fine line to dance! Needless to say, sleeping at the hospital isn't really conducive to parental rest when it takes three people to get him to the toilet, and it includes much screaming and yelling.
I wish I had a video of a bathroom run, but I can't do that and be one of the three people it takes to get him there. The halo is only supposed to be about 7 lbs, but since it throws off the center of balance, making the person top heavy, you're also supporting their entire upper body which is FORCING itself forward. So for Axel, that's about 25-30 lbs that we're struggling to move forward yet keep upright while not getting impaled with the pins or posts. Once we get to the bathroom
The next thing I know it was 8:00 in the morning and the surgeon (and his entourage) was with him. I was snoring on the roll-away bed. Lovely. Pretty sure I was drooling too. And you should see my hair when I wake up.
Dr. Samdani is very impressed with how quickly Axel is progressing, and I have to agree. Once that visit was done it was time to get Axel to the toilet...again...only this time he must have listened to what the Dr. said about how well he was doing, and he did GREAT walking to the bathroom. Still with 3 people, but with much less screaming and crying.
That done, we got Axel into his chair and went down to the front lobby to wait for Papa and Angela to come. I wish my battery hadn't died on my camera! I could have shared with you the first belly laugh we've seen since Monday.
Later in the day it was time for PT. Since kids are really top heavy when they get their halos on, they have to re-learn how to stand up straight, and the older the kid the longer this takes. The little kids do it pretty quickly, the big kids try to overcompensate, etc. Anyway, when PT Mark came the first time he brought with him a walker which helped, but Axel was still really pitched forward. Later in the day he brought a reverse walker. WOW! Axel stood right up, nice and tall! He walked the 10 feet to bathroom without any complaint. When we sat him up I was able to get a picture of his fusion incision. His hip incision is kind of underneath the vest and hard to see. (which makes keeping it clean really easy. NOT!)
Angela had spent the entire morning wheeling Axel's smaller wheelchair around and around the 5th floor, and Axel had been up a couple of times and stressed out by various things, so by that time it was 2:00 and everyone was tired. It was time for a family nap! Axel took the bed, Angela took his reclining wheelchair, I took the roll-away, and Dean found a couch somewhere in an empty playroom. Angela wasn't really excited about taking a nap, but all I had to do was turn on the T.V., turn off the lights, and out she went! LOL We all slept for almost 2 hours!
One of the girls on the floor had a surprise birthday party yesterday. We all went down to have pizza and cake, but Axel was still sleeping so he missed out. But, the party was a pirate theme, and we brought him stuff! Last night Dean, Angela and I all slept at Ronald McDonald house, so this is how we left the pirate last night. LOL Terri, if you're reading, do you see the chain of fiddles you sent him? His favorite is the barrel of monkeys to shake!
Today I'll try to get a video of him walking. He'll be discharged somewhere between tomorrow and Monday. Since Dean and Angela are leaving Sunday, I have to be able to do transfers with him myself.
Wednesday, May 18, 2011
Sitting Up
Today was a day of changes for Axel. First, our surgeon Dr. Amer Samdani came in to see how Axel was doing. Because we started getting Axel up to pee yesterday afternoon (since he refused to have anything to do with the urinal) that put him slightly ahead of schedule in the recovery process. We'll just have to see if he stays ahead or ends up discharging at about the same time as the other kids.
As you read the rest of this post, know that every.single.step involved much screaming and crying. Some related to pain, and some just about the fact he now gets mad as soon as anyone walks into the room and he anticipates being messed with. He's still living up to the "spider monkey" nickname! Man, can he reach around behind him when you *think* you're holding his arm!!!
So, the first thing we did was remove the bandages on the main surgical site on the back of his neck. The incision is about 4 1/2 inches long, and sure looks sore. OUCH!
Next was to remove the drain from his hip where the bone graft was taken from. This was probably the worst thing of the day. Adults who've had this procedure done say that hip feels like it's been cracked in half. Between the fact they have to move and REmove muscle from the bone in order to get to it, plus they cut a hunk out of it, I can only imagine the pain! Then there is the nerve pain on the skin near the incision. Oh, and pulling the stitch that holds the drain in place. (Renee, the internal portion of Axel's drain was only about 3-4 inches long.)
After that was all removed, a lidacaine patch was placed over the top. This stayed on for 12 hours, then is removed for 12 but maintains it's effect. Another will be applied tomorrow morning. The purpose of the patch is more localized pain relief, allowing him a *slightly* easier time walking.
Next came pin care. Lovely. Cleaning the pins. They're not supposed to hurt, but there is definetly pressure. Axel's crying was much more pissed off than anything else during this fun stuff. Oh, and it was two nurses-in-training learning to do this so they got a lesson in "turning off" your emotions when doing difficult stuff like that.
We also ditched the oxygen he's been getting when he sleeps, and disconnected his I.V. narcotics, switching him to oral morphine instead.
So that was all done by about 10:00 this morning, and with all that screaming and crying he was ready for a NAP. So was I. :-)
At 1:00 PT came in. I can tell you that Axel does NOT like Mark, because Mark makes him do stuff. Like stand on an incredibly sore hip. But today was better than yesterday, and with three people holding him we were able to get him to the toilet to pee. (last night we were just using the camode by the bedside.) One discovery I made: My back is a MESS! Yesterday, the first time we moved him, I realized my back cannot handle bending over him, supporting him. That and in the airport in Minneapolis I managed to do something to my repaired wrist, and it's still not back to normal. So we've been trying to have staff do all the lifting, but I'm a control freak and sometimes it's just easier to do things myself than try to explain it to someone. I know this is bad, and I'm trying to just give it up so that my back is in good shape for when he is discharged and I'm on my own.
After the field trip to the toilet, Mark brought a special treat: A wheelchair! Axel was able to see this place he's spent the past several days, and even got to go to the giant playroom with Dean and Angela.
He stayed in the chair for about 2 hours, dozing off and on before we brought him back to his room for a much needed nap. Just like getting into the chair, getting out includes the same screaming and crying. Oh, and when he's standing and having to "walk" (because it is so not a "walk" at this point.) even though that hip is killing him he's able to stomp that foot in anger! I think I've mentioned his foot stomp before. It usually annoys me, but in this circumstance it kind of cracks me up because we can see his spunk coming back.
Axel did get one surprise tonight. Dean, Angela and I went back to Ronald McDonald house for a few hours so I could get a good nap (slept like a ROCK for two hours!) and dinner, haircut for Dean from a visiting salon, etc. When we came back to the hospital at 7:30 Axel had eaten dinner and was back in his wheelchair, sitting at the nurses station. But he didn't look very happy and wasn't smiling. I went to the room and took out something I'd been saving for a moment just like this. When he needs a favorite something from home.
You know those Signing Time videos? Axel not only watches them obsessively, but he LOVES the little booklets that come inside each dvd case! He has collected them, and at home keeps them all in a nice neat stack which he carries around the house with him. He ADORES these things! So, when I brought them out from behind my back his face lit up for the first time since Monday. OH HE WAS SO HAPPY!!!!!! He kissed the picture of Rachel, made the nurses look at the booklets, etc. He fell asleep tonight holding them. I don't know what we're going to do if these things ever fall apart.
Here's a picture of Axel having a very awake moment in the chair. I had just given him his Signing Time booklets. He was sound asleep again a few minutes later.
Tomorrow proves to be another big day. He'll be getting his vest and halo adjusted so it's straight. They have to wait to do it when he's able to stand up straight, bearing equal wait on both hips. For those who asked, no he cannot bathe with the halo & vest on. The vest does NOT come off except in extreme emergency....like choking....The purpose of the halo/vest is to keep the bone graft 100% still so it can graft together and heal, and the halo is held in place by the vest, which is fitted to the body.
As you read the rest of this post, know that every.single.step involved much screaming and crying. Some related to pain, and some just about the fact he now gets mad as soon as anyone walks into the room and he anticipates being messed with. He's still living up to the "spider monkey" nickname! Man, can he reach around behind him when you *think* you're holding his arm!!!
So, the first thing we did was remove the bandages on the main surgical site on the back of his neck. The incision is about 4 1/2 inches long, and sure looks sore. OUCH!
Next was to remove the drain from his hip where the bone graft was taken from. This was probably the worst thing of the day. Adults who've had this procedure done say that hip feels like it's been cracked in half. Between the fact they have to move and REmove muscle from the bone in order to get to it, plus they cut a hunk out of it, I can only imagine the pain! Then there is the nerve pain on the skin near the incision. Oh, and pulling the stitch that holds the drain in place. (Renee, the internal portion of Axel's drain was only about 3-4 inches long.)
After that was all removed, a lidacaine patch was placed over the top. This stayed on for 12 hours, then is removed for 12 but maintains it's effect. Another will be applied tomorrow morning. The purpose of the patch is more localized pain relief, allowing him a *slightly* easier time walking.
Next came pin care. Lovely. Cleaning the pins. They're not supposed to hurt, but there is definetly pressure. Axel's crying was much more pissed off than anything else during this fun stuff. Oh, and it was two nurses-in-training learning to do this so they got a lesson in "turning off" your emotions when doing difficult stuff like that.
We also ditched the oxygen he's been getting when he sleeps, and disconnected his I.V. narcotics, switching him to oral morphine instead.
So that was all done by about 10:00 this morning, and with all that screaming and crying he was ready for a NAP. So was I. :-)
At 1:00 PT came in. I can tell you that Axel does NOT like Mark, because Mark makes him do stuff. Like stand on an incredibly sore hip. But today was better than yesterday, and with three people holding him we were able to get him to the toilet to pee. (last night we were just using the camode by the bedside.) One discovery I made: My back is a MESS! Yesterday, the first time we moved him, I realized my back cannot handle bending over him, supporting him. That and in the airport in Minneapolis I managed to do something to my repaired wrist, and it's still not back to normal. So we've been trying to have staff do all the lifting, but I'm a control freak and sometimes it's just easier to do things myself than try to explain it to someone. I know this is bad, and I'm trying to just give it up so that my back is in good shape for when he is discharged and I'm on my own.
After the field trip to the toilet, Mark brought a special treat: A wheelchair! Axel was able to see this place he's spent the past several days, and even got to go to the giant playroom with Dean and Angela.
He stayed in the chair for about 2 hours, dozing off and on before we brought him back to his room for a much needed nap. Just like getting into the chair, getting out includes the same screaming and crying. Oh, and when he's standing and having to "walk" (because it is so not a "walk" at this point.) even though that hip is killing him he's able to stomp that foot in anger! I think I've mentioned his foot stomp before. It usually annoys me, but in this circumstance it kind of cracks me up because we can see his spunk coming back.
Axel did get one surprise tonight. Dean, Angela and I went back to Ronald McDonald house for a few hours so I could get a good nap (slept like a ROCK for two hours!) and dinner, haircut for Dean from a visiting salon, etc. When we came back to the hospital at 7:30 Axel had eaten dinner and was back in his wheelchair, sitting at the nurses station. But he didn't look very happy and wasn't smiling. I went to the room and took out something I'd been saving for a moment just like this. When he needs a favorite something from home.
You know those Signing Time videos? Axel not only watches them obsessively, but he LOVES the little booklets that come inside each dvd case! He has collected them, and at home keeps them all in a nice neat stack which he carries around the house with him. He ADORES these things! So, when I brought them out from behind my back his face lit up for the first time since Monday. OH HE WAS SO HAPPY!!!!!! He kissed the picture of Rachel, made the nurses look at the booklets, etc. He fell asleep tonight holding them. I don't know what we're going to do if these things ever fall apart.
Here's a picture of Axel having a very awake moment in the chair. I had just given him his Signing Time booklets. He was sound asleep again a few minutes later.
Tomorrow proves to be another big day. He'll be getting his vest and halo adjusted so it's straight. They have to wait to do it when he's able to stand up straight, bearing equal wait on both hips. For those who asked, no he cannot bathe with the halo & vest on. The vest does NOT come off except in extreme emergency....like choking....The purpose of the halo/vest is to keep the bone graft 100% still so it can graft together and heal, and the halo is held in place by the vest, which is fitted to the body.
Kiss the Bear
Yesterday (Tuesday) Axel had just a few minutes where he was feeling semi good. It seems a long time ago already! Anyway, he was loving on his Bobo bear.
Right now I'm waiting for Dean and Angela to come to the hospital with clean clothes for me so I can get a shower. I expect him to get worse today since he's going to get up and moving with PT today, get his vest and halo adjusted, drain tube out of his hip, bandages removed from his neck and changed on his hip and other things he really wants nothing to do with!
Right now I'm waiting for Dean and Angela to come to the hospital with clean clothes for me so I can get a shower. I expect him to get worse today since he's going to get up and moving with PT today, get his vest and halo adjusted, drain tube out of his hip, bandages removed from his neck and changed on his hip and other things he really wants nothing to do with!
Tuesday, May 17, 2011
How About Some Humor?
There are only a few situations in life where you can't find any humor at all, and I'm all about finding it even in the worst of them.
1) Axel has fantastic range of motion, even in the hip the graft was taken from. Yep, he can kick a nurse who's way up by his head square in the chest.
2) Axel can be in the middle of a mad, crying, painful rage, and still manage to say, "Signing Time" to make us forget what we're doing.
3) Axel is intentionally waiting for me to get right in his face to cough. What a sweetheart.
4) Axel grabbed a male nurse in the crotch while getting moved to the toilet.
5) Axel just peed a HUGE amount. More than he normally pees in a 24 hour period. He let out an audible "Aaaaahhhhhhh" when he was done.
6) A male nurse and I were just discussing the fact they cannot tuck Axel's hands under the blankets because it takes away his communication. The nurse proceeded to tell me how his good friend works at the area school for the blind and signs all the time. I'll let you process that one for a minute.
Not funny but VERY sweet, as we were getting ready to move him this last time, I was leaning over Axel's head to move some tubing. He was mad and screaming because he was anticipating being moved when he suddenly gave me a GIANT pucker, wanting me to kiss him. Poor baby!
1) Axel has fantastic range of motion, even in the hip the graft was taken from. Yep, he can kick a nurse who's way up by his head square in the chest.
2) Axel can be in the middle of a mad, crying, painful rage, and still manage to say, "Signing Time" to make us forget what we're doing.
3) Axel is intentionally waiting for me to get right in his face to cough. What a sweetheart.
4) Axel grabbed a male nurse in the crotch while getting moved to the toilet.
5) Axel just peed a HUGE amount. More than he normally pees in a 24 hour period. He let out an audible "Aaaaahhhhhhh" when he was done.
6) A male nurse and I were just discussing the fact they cannot tuck Axel's hands under the blankets because it takes away his communication. The nurse proceeded to tell me how his good friend works at the area school for the blind and signs all the time. I'll let you process that one for a minute.
Not funny but VERY sweet, as we were getting ready to move him this last time, I was leaning over Axel's head to move some tubing. He was mad and screaming because he was anticipating being moved when he suddenly gave me a GIANT pucker, wanting me to kiss him. Poor baby!
Just in case
Just in case you wanted to know, (Ann!) Axel just peed 540 whatever-the-unit-of-measurement-is!!!!! It's a major event to get him up to pee, and in four hours we'll be doing it again.
A Very Rough Day
The morning started out pretty good. Axel was "de-intensified" (had his arterial line, catheter, one of his IV's and oxygen cannula removed) and he was moved back down to a regular room.
About 3:00 he was complaining and pushing on his belly. They scanned him and found 400+ mls of urine in there (about double what his capacity should be.). He was wearing a pull-up, but you know...he's TEN and not gonna pee in it. We tried a urinal, and that got him making his noise he reserves for the most annoying situations. Although he wasn't due to start moving until tomorrow, we decided to try getting him to the toilet tonight. That took four people. Lots of crying and screaming because the hip where the graft was taken was very painful! Got him to the toilet but he just couldn't settle down. Finally we gave up, put him back to bed (more screaming) and used a catheter to empty his bladder, removing 475 mls of urine. Poor baby.
Two hours later he was distended again. We scanned him and he already measured 200+ mls. That's what happens when the kid is doing great with drinking! So we brought him to the bathroom again, and this time he WENT on his own, which was a huge accomplishment. But when we stood him up (four of us crammed into the TINY bathroom area!) his belly was still distended. We scanned him while he stood there and he was still at 200. UGH! We sat him back down and I sat in the bathroom with him balancing him for about 1/2 hr. Still nothing. We finally gave up. We'll try again in just a little bit but if he doesn't go, we'll have to cath him since his bladder is so distended, which makes his pain management difficult.
Moving him to the bathroom right now is a huge ordeal, and my back does not like it one bit. Once he gets his IV out it will require one less person, and once he understands that he has to stand up straight (and not KICK those helping him) it will be even easier. I'm sure Axel feels like me, that life would be great if he (and I) could just blink and these next few days would be over.
About 3:00 he was complaining and pushing on his belly. They scanned him and found 400+ mls of urine in there (about double what his capacity should be.). He was wearing a pull-up, but you know...he's TEN and not gonna pee in it. We tried a urinal, and that got him making his noise he reserves for the most annoying situations. Although he wasn't due to start moving until tomorrow, we decided to try getting him to the toilet tonight. That took four people. Lots of crying and screaming because the hip where the graft was taken was very painful! Got him to the toilet but he just couldn't settle down. Finally we gave up, put him back to bed (more screaming) and used a catheter to empty his bladder, removing 475 mls of urine. Poor baby.
Two hours later he was distended again. We scanned him and he already measured 200+ mls. That's what happens when the kid is doing great with drinking! So we brought him to the bathroom again, and this time he WENT on his own, which was a huge accomplishment. But when we stood him up (four of us crammed into the TINY bathroom area!) his belly was still distended. We scanned him while he stood there and he was still at 200. UGH! We sat him back down and I sat in the bathroom with him balancing him for about 1/2 hr. Still nothing. We finally gave up. We'll try again in just a little bit but if he doesn't go, we'll have to cath him since his bladder is so distended, which makes his pain management difficult.
Moving him to the bathroom right now is a huge ordeal, and my back does not like it one bit. Once he gets his IV out it will require one less person, and once he understands that he has to stand up straight (and not KICK those helping him) it will be even easier. I'm sure Axel feels like me, that life would be great if he (and I) could just blink and these next few days would be over.
News and Thanks
First, BOTH Axel and I got a good night sleep last night! WOOT WOOT! I didn't hear a sound out of Axel after about midnight, and even that was just for a couple of minutes. His nurse kept him loaded up on meds, and watching his monitors closely for signs of agitation before he even woke up. (changes in heart rate, blood pressure, etc.) Axel easily becomes hypothermic even on a good day, so his body temp is running a little on the low side, but otherwise he's doing just great. I've had a shower and everything already so I'm ready to start the day. (ok, well those who know me also know that by 10:00 a.m. I'm going to be contemplating a morning nap. LOL)
Dean and Angela stayed at Ronald McDonald house last night. I skyped with them around 8:00, and Angela got to see Axel for just a second. Dean said she was in bed all of four minutes before he heard her snoring. Hopefully Dean got a good night sleep too, because we're switching kids this morning and he'll be on Axel duty.
Today will be a difficult day as we start bringing Axel's pain meds down a bit, then tonight or tomorrow we'll move him out of PICU and back down to his regular room. Ok, I am off to find a toothbrush!
Dean and Angela stayed at Ronald McDonald house last night. I skyped with them around 8:00, and Angela got to see Axel for just a second. Dean said she was in bed all of four minutes before he heard her snoring. Hopefully Dean got a good night sleep too, because we're switching kids this morning and he'll be on Axel duty.
Today will be a difficult day as we start bringing Axel's pain meds down a bit, then tonight or tomorrow we'll move him out of PICU and back down to his regular room. Ok, I am off to find a toothbrush!
Monday, May 16, 2011
The set up
Here are a couple of pictures of Axel's room in the PICU. Most of the machines should be gone by tomorrow afternoon.
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