Merry Christmas

Wishing, part 2

Where has my week gone? Sorry I left you hanging with the wish. Life is busy enough as a mom of four, but then add Christmas, and our anniversary and there is little time for blogging. I have been trying to simplify--I'm not sending Christmas cards or taking gifts to neighbors. And for once in my memory I haven't baked any goodies at all.

Not that we are being deprived of sweets. So many people have remembered us this Christmas and we are feeling very loved and very humbled. Thank you Anonymous for all the many ways you've helped our family this year and this season. I don't know where to send the thank you notes, but you all know who you are.

So, the wish. On Monday afternoon, Steven's wish granters called and told me that the wishing room was still broken, but they wanted to come over to our house and visit with Steven and get the paperwork started. Then when the room is fixed, Steven can go and officially declare his wish. She then asked if Steven knew what his wish was and I told her that he wanted to do a Disney Cruise. "Oh, Make-a-Wish doesn't do Disney Cruises anymore for financial reasons, but he could do a regular cruise or Disneyworld--just not the Disney Cruise."

Well, try to imagine how that went down with Steven. I got off the phone and told him the news and he shed many tears of bitter dissapointment. They were coming in two hours and I suddenly needed to get my house clean and help Steven stop crying so he could think of a new wish. Luckily, my youngest sister, who was home from college, was at my house and helped with all of these things. By the time the wish granters came, Steven was ready.

We played the wishing game and they asked him about all of his favorites. He had ready answers for all of them, including a truth-or-dare question from the game about where he has a scar, "On the top of my head where I had a mole removed." We all thought this was pretty funny considering his foot is on backwards, but he didn't see what was so funny and was a little embarrased that we laughed.



When it came down to the wish, we discussed different kinds of trips that would be just as fun as a Disney Cruise. The other wish granter told him that he may be able to write a letter to the board and convince them that he needs a Disney Cruise to fulfill his wish. Personally, I feel like beggars can't be choosers, and that another trip would be just as fun anyway, so if I have any say, he won't be writing that letter. But in an effort to get to the bottom of what would really make him happy, I asked him, "Steven, what would you tell the board in a letter? Why do you want to go on a Disney Cruise so badly?"

"Well, it looks like so much fun," he said, and then his bottom lip started to quiver, "And it's just that my family has never been on a real vacation." Oh, boy, now they are going to feel sorry for us! For the record, we have been on family vacations. True, none have been to Hawaii or Disneyland, but whatever.

In the end, he loved the idea of seeing a volcano in Hawaii and he also thought a cruise still sounded really fun. His job is to decide between those two wishes in the next couple of weeks. He may even get to do a cruise in Hawaii--we will see.

Here is the picture that they will put up on the wall at Make-a-Wish:



By the way, Steven is doing just great right now. Since Monday he's been up on his crutches and off pain medicine. He went to school again on Wednesday and was playing dodgeball last night at the family party.

Hopefully I'll post for Christmas, but if my life gets super crazy, I truly hope that all of your wishes come true this Christmas.

Wishing....

Yesterday Steven was supposed to declare his wish at the Make-a-Wish wishing room. Unfortunately, the room was broken (let's hope that isn't some sort of omen!) and we had to reschedule for tomorrow afternoon. He was pretty disappointed, but got over it and is really looking forward to tomorrow.

I won't have time to post about the wish declaration for a few days, but before he wishes, I wanted to list off all the things he has considered for his wish. This is a kid who studies maps for fun and has a variety of interests and passions. He has pondered his wish for all the months of his treatment. In fact, if he is ever feeling down, we can usually distract him by talking about what he wants to do for his wish. He has had a really hard time coming to a final decision, in fact, I'm not even sure he knows it yet. I guess we will know by tomorrow.

So here is a partial list of ideas he has considered (in no particular order). These are only the ones he has thought about--some he has thought of on his own, while others have been suggestions from others. I am not listing the ideas from other people that haven't interested him. For example, he hasn't considered a trip to Florida no matter how many different ways I try to spin it.

Unlimited wishes :)
Trip to Fiji
Trip to Hawaii (to see a volcano)
Trip to Mexico
Shopping spree
Lego room
A clubhouse
Trip to Yellowstone (to name a gyser)
European tour
Disney Cruise
2012 London Olympics
A giant coin collection
Legoland Denmark
African safari
Trip to the Galapagos Islands

He has gone to bed, or I would ask him if I have forgotten any. I know I have--for a while he had a new idea every week. Some of his ideas are very impulsive. For example, when he wanted a giant LEGO set, I asked him if he would even have the patience to put it together. "Well....no, but Andrew could do that for me!" Or once he thought of a video game room and I pointed out that it would be pretty lame to wish for something I wouldn't let him use very often! Oh yeah, and the fact that we have no house (details). Anyway, we are looking forward to tomorrow and to whatever comes of it. I can't even tell you how helpful it is to have something fun we can dream about!

By the way, Steven is doing much much better. He is totally off pain meds now and for the first time tried hanging his leg down and did just fine. Hopefully we'll get him up on crutches tomorrow, if even for a little bit. He is a little nervous about school because he has a substitute for the next couple of days, so he may not go again until Wednesday.

Okay, so....

On Wednesday day morning, I took Steven into see Dr. Jones for a follow up appointment. Before we saw the doc, he needed some Xrays. Getting Steven on the table and putting his leg in the position they needed for the pictures was excruciating. He was screaming through it all and the techs were trying to get what they needed as fast as they could. I had every intention to take pictures of the xray, but with all the drama, it slipped my mind. So now I will just have to try to describe what I saw.

Let's just say, that at first glace from my untrained eye, I saw immediately why Steven is in so much pain. In fact, it made my stomach churn. When Dr. Jones said he broke it the other direction, he wasn't kidding. Even the techs were really confused about why a cast was on and his bone looked like that. Imagine taking a stick and breaking it in half. There are jagged edges all around it. Now set it at a slight angle--the jagged parts are jutting out. That is my small attempt to describe what I saw.

Dr. Jones said that everything looked good--it was what he expected to see. So, I guess that is good news. I asked him how it would grow back--he said that eventually (as in a few years), the bone would look smooth again--crooked, but smooth. In the meantime, Steven is in extreme pain because unlike his surgery, or even the orginal break, there iis no metal plate holding the pieces together. As Dr. Jones put it, the muscles and cast are holding the bone "in the general zip code" of where they are supposed to be and until the bones start to knit together, every little movement makes the bones with all their nerves rub together. Sounds awful, huh?

On the bright side, Steven seemed to be in a little less pain yesterday. He even made it to school in the morning, and moving him wasn't too excruciating. He is still taking pain medication, but he isn't needing it every three hours like he did before. He is still in the wheelchair and trying to keep his leg as still as possible, I guess the improvement I see is that he is moving faster as we transfer him from one place to another. He is in excellent spirits for the most part. Going to school did him a world of good as the kids in his class gave him a warm welcome and he was able to catch up on some things. Today he won't go because the 4th graders are going on a ski trip. Back when they were planning this and we decided he wouldn't go, I felt one of those twinges of saddness that he couldn't do what the other kids were. But now skiing is so beyond his abilities that I am mostly just glad I don't have to figure out how to get him to school today. The sadness comes about things like the fact that he can't use the bathroom without assistance. Funny how my perspective has changed.

He goes back to see the doctor in mid January again, and when he does, I promise I will get pictures of the Xrays.

Christmas expectations

As the days tick past, we are seeing gradual improvement with Steven's pain levels. He is taking less and less medicine and is moving a little faster. But when I say a little, I mean a little. He is fine as long as his leg is in a certain position, which is straight out in front of him, or a little elevated. So moving him consists of holding onto a pillow which holds his leg (almost like a sling) and then he moves himself slowly with his arms and other legs into his wheelchair or out of it, depending on where he is going. On Saturday we were able to take him to the movies and then he went to sacrament meeting on Sunday and to his grandma's house. Moving him in and out of the car is the hardest of all, but it can be done. I may have mentioned before that it takes about two weeks for the bones to start to knit together to where it doesn't hurt as badly to move.

He is sleeping through the night (usually) and in a happy mood. Yesterday we had a bit of a set back--he was doing homework on the computer and the keyboard fell on his toes. He is in more pain today and blames that little accident for the slide backwards. Who knows?

Still, there is no denying he is in a holiday mood. Last night we put together a gingerbread house and all the kids were loving it. I got fed up with being bossed around by my kids who all had ideas of their own, so I quit my job as the frosting person and moved to clean up. Steven said, "Okay, that means I'm first in command now!" He also said, "Okay, so tomorrow, let's make a gingerbread village from scratch." He has some big ideas--too bad he's lacking the mobility to really make them happen!



I have been thinking about the timing of his fall with Christmas coming up. I had big plans for this month. Anyone who knows me knows that I like to go places. For Christmas, I gave my kids an advent calendar with a fun thing to do every day and told them that was their Christmas present from me. Some things are stay at home things like making cookies, but others were fun adventures. It has been hard to let go of some of the plans as our situation changed last week.

I've thought a lot about President Uchdorf's talk at the First Presidency Christmas devotional. He talked about expectations and how we can get disappointed if Christmas doesn't meet our hopes of perfection. He also reminisced about a Christmas as a little boy where he burned down the living room curtains with a candle from the tree. Both points were very meaningful to me--that Christmas doesn't have to be perfect to be filled with love, and our children deserve our love, even when they make mistakes.

I thought a lot about Andrew and how his little shove has had such big consequences. I realize that this isn't his fault--it isn't his fault that Steven has such brittle bones. I have had a good long talk with Andrew about how it was just an accident and he is not to blame, but I think he still feels really bad. We have got to figure out how to make sure he never doubts our love. I guess that is the goal of all parents, really.

In the end, I haven't come to any real conclusions or had any amazing epiphanies--but I know there are some profound lessons to be learned here if I ever get a minute to think very hard about it. In the meantime, I am working on changing my expectations. Hasn't this year taught me how to do that yet? I guess I need to hurry and learn!

Hair--2 months out

So, today is the two month mark from Steven's last chemo. His hair is longer than ever, and coming in much lighter than it was. What? At first he thought it was grey--it does seem to lack some of it's old colorfulness.

He has had a better day. He is still extremely careful with his leg and will only move very, very slowly in and out of the wheelchair. He is in good spirits, though. In the picture, he is playing with bubbles and dry ice. He spent a long time making a popcorn string--somehow he is still obsessed with the Christmas tree. Most of his anxiety about moving is gone. Okay, he is still worried and careful, but he isn't hyperventilating and crying anymore.

Someone asked when he would be going back to school. I don't know about that--I am almost positive it will be before the 8 weeks is up. He probably won't make it back next week, but I bet he will by the week before Christmas. Okay, I hope he will. If he doesn't go back and he continues with his obsession, we will have the most decorated tree in town. I will have to take a picture--I have been very generous and let my kids do most of the decorating. It is pretty special!

Home tonight

Steven made it home this evening and he is so glad. It was not an easy process. He needed to get into a wheelchair and then into the car. It took about an hour to get him into the wheelchair. He had some serious pain and probably more than anything, some serious anxiety. The nurse was really pushing him--he wanted to stay and she wanted us gone--and he was getting bugged by her. When she left the room (and he was sitting on the side of his bed), I said, "Don't you want to go home so you don't have to have nurses boss you around?" That did it (and the mention of the Christmas tree). And then he overcame whatever it was that wouldn't let him move into the chair. It wasn't easy, but here we are. Lets hope the days just keep getting easier in his recovery! I guess that is the general idea. They say it takes about two weeks until the bone has made enough fibers to hold it together so that it isn't rubbing against itself and irritating nerves inside the bones. Two weeks is when he sees the doctor again.

Steven's pain has been under control. . . as long as he holds still. He is eating, but to go home we will have to move him, so my best guess is that we will be here another night. He did have a good night--he slept from 10 till 4 with no morphine (but with Lortab) but we wanted to shift him to avoid bedsores around 4, so he got morphine. He has had no trouble going back to sleep all morning as docs and nurses came in. He just told the nurse that he couldn't go home today or tomorrow. This from the kid whose main goal has always been to get out as fast as he could. He was so sure of himself, he must be in some serious pain. Hopefully he will improve faster than he thinks.

Yesterday morning, the kids woke up and started decorating the Christmas tree. He got really excited about ornaments and has been wanting to make some. We did one yesterday while waiting for surgery and he woke up this morning wondering if I finished it and if we could make some ornaments today. Luckily Kids Crew has a craft mecca, so maybe he can do some of that today. Steven is not a crafter, but he is so excited about Christmas.

Surgery

I wasn't planning on an overnight stay at the hospital tonight, but here we are. Not my first choice, but oh well. I am tired and busy and my keyboard is at home, so I will give a short update.

This morning we rushed out the door to come see Dr. Jones and get a cast. Dr. Jones still hadn't seen the xrays and when he examined Stevens leg he was struck by two things. First of all the splint from the ER came about an inch above the break, so it was doing more harm than good. One explanation for why Steven hasn't wanted to move an inch all weekend. Also, his leg was crooked. He looked at the Xrays and sure enough, the bone was bent. He said he wished it had broken the other direction, because he could have cast it as is and it would have helped Steven to get his leg straighter, thus helping with the walking. But as it was, he really felt like surgery would be best. He also decided to remove the screws and plate while Steven was under anesthesia and not going to be weight bearing for a while. This isn't standard because it isn't worth the risk of surgery and the inconvenience of not walking, but the screws can weaken the bone, so he thought it would be beneficial under the circumstances. Dr. Jones was willing to do the surgery right then, but unfortunately, Steven had eaten a bite of bagel with his Advil at my insistence before we left, so he had to wait 6 hours until he could go under anesthesia.

Steven was very unhappy about all of this and cried more than I have seen him cry in a while. He was really nervous about the surgery and the thought of being in a cast again. I must have cried all my tears because I have been okay. My sister brought her son over to keep Steven company until he had to go into surgery. It cheered him up immensely and he did fine. He was also feeling much better with the long splint that he had for the morning. He was finally able to move a little.

So we headed back to the hospital. James (my nephew) came along and distracted Steven some. If Steven ever paused to think about the surgery he would tear up. But he was in good spirits when the nurse practitioner came to examine him. She asked him what his pain score was and he said "zero" with a smile. At this point my sister had come to get James and she instantly thought of the Brian Regan sketch on a broken femur. You will have to look it up on you tube since i cant link with my limited technology. We watched it and Steven was wheeled to the OR giggling.

Alisa and James left and I waited. After a few hours, Dr. Jones came out to tell me all had gone well. While in the surgery, he remembered thinking that he wished the bone had broken the other way and he decided to set it angling up in order to help Steven straighten out his leg and walk better. So basically he broke it the other way. Stevens bones are so weak from chemo and not bearing weight for so long. But that is another post.

I left the waiting room (where, incidentally, the receptionist remembers me) and into recovery. Steven was screaming until he got enough medicine to knock him out. He is finally claiming exclusive rights to the 10 on the pain scale. He is comfortable now, but is getting morphine every 2 hours. He was so sad when he heard we were staying overnight, but now he is scared he wont ever be able to get off the bed. Hopefully we have seen the worst. Luckily his cast is not over his pelvis, but it is still awfully high, understandably so. We got a jar with the screws and the plate. I can't believe how big they are. Steven keeps wailing things like, "why did this have to happen?!" and "Why did Dr. Jones do this to me?". I am sure we will make it through somehow. Time will tell. Thank heavens for pain meds, that is what I am saying tonight. I will try to update as things progress, but for now we are planning to go home tomorrow. He will be in a cast for 8 weeks.

An update

So....I am super tired tonight--mostly emotionally. I can't even describe how discouraged and disheartened I've been about the leg break. Of course, you would think that I would be a little more sympathetic for the patient and a little less concerned about my own disappointment. He is in a lot of pain and is very sleepy. He didn't sleep well last night and between that and the pain medication, his eyes were drooping all day. He fell asleep in the recliner tonight.

It isn't fun to see him in pain, but I know that he will get over it, so my concerns are mostly centered on the future. You would think I would have learned not to count on the future too much. My life certainly hasn't turned out like I planned. During chemo, I got very good at living day to day and focusing on the present. Since he has finished chemo, I've been trying very hard to plan ahead and set goals. I know that the future is uncertain, but I have really centered my life on getting Steven walking again and putting our lives back together.

So now, this is a huge game changer. It is hard to know how this will work out. Will he be starting over? Or has he made some gains? I suppose only time will tell.

Dr. Jones called late last night. He had been at a conference all weekend with no cell phone coverage and called as soon as he got our message. How amazing is that? I'm telling you--he is an outstanding doctor and person. Anyone who knows him and hears that he is Steven's doctor says something positive about him.

But I digress. Dr. Jones will put a cast on Steven's leg on Tuesday. He hasn't seen the Xrays yet, but from what we told him, he thinks that Steven will be in some sort of cast or splint for at least six weeks, depending on how well it heals. He may be in a cast for only half that time and then move to a shorter cast or splint. Either way, he won't be bearing weight for that time and when he does, it will be very gradually. Because his bone hasn't been bearing weight for so long, it is not very strong and this is fairly common with limb reconstructions.

Common or not, it is still bad news. I really don't know how long we are looking until he is walking again. So much will depend on him and if he will do what he needs to do. Last as I was going to sleep, I literally couldn't stop crying. I couldn't figure out how to stop so I could go to sleep. I had been thinking about a woman I talked to whose son had a rotationplasty four or five years ago. He has had a rough road and even broke his foot at one point. Despite this, she told me that she was very pleased with the surgery and felt it was the right decision. I have been wanting to call her but I thought I lost her number. When I couldn't sleep I went looking for it and found it right away. Somehow just thinking that I can call her this week calmed me down and I was able to sleep (at least until Steven woke up with pain).

I think we will get through this. I am not sure how or what it is going to take, but what else can we do but keep trying? I have felt many times today like throwing my hands in the air and giving up. But that is pretty ridiculous if you think about it. We will do what we have been doing all year--taking each day one at a time, living with hope, and trying our best. I guess that is human nature and is what makes this world go around.

When will he walk again?

Okay, here is a post I've been avoiding for a long time. And it includes something new that I really hate to tell you, but even more so, hate that it happened. If you want to read that, skip to the end.

The big question on everyones minds, including my own, is "When will he be walking?" This is a difficult question. The answer that we have recently heard is that once he trusts his leg a little more and will step down into it with his weight, we will see that he will progress very quickly.

So, why doesn't he bear more weight on his leg? Well, there is the physcological side of it--I've heard that often amputees have a hard time trusting thier prosthetic. Plus, since his surgery seven months ago, he hasn't born a whole lot of weight on his leg, so there is some serious atrophy of the muscles.

Also, you can tell by the pictures of his leg, he can't stand up straight on his leg. The rotationplasty leg is longer with the prosthetic. His prosthetist believes that this is necessary to get his foot stretched out more. There is a difference of opinion here. Steven's orthepedic doc thinks that he would get better faster if he could stand up straight on his leg, meaning that his foot would stick out a little in the back. Does this make sense to anyone?

I asked the prosthetist about that, and he said that eventually, that is what they will do, but his hope is that having the leg how it is now will help him get more stretch, which translates into a bigger range of motion.

This is all very confusing to explain. When I have him at therpy or I am speaking with the prosthetist, I understand most of what they are telling me. But I have a hard time even retelling it to Rob. This week I made Rob take him to the appointment because I wanted him to have a better understanding of what is going on.

So, then there is the question, "Why can't he walk?" Well, his muscles just aren't strong enough to totally hold him up. The good news is that he is making progress. He can't put a lot more wieght on a scale now with his prosthetic leg than ever. He can put almost 50 lbs on the scale, but he now weighs over 65 lbs, so he is still a little short. He will "walk" without crutches sometimes, but it is a very severe limp, and you have to wonder if his amputated leg is doing any of the work.

I think one reason he is taking so long to rehab has to do with his personality. He wants to be just as fast as all the other kids, or actually, faster. So he often just crutches along, lifting his foot totally up, to be able to hurry. The more he takes short-cuts like these, the longer it will be until he walks. It is very difficult for even a very bright 9 year old like Steven to wrap his mind around the idea of sacrificing some speed now to be walking sooner.

One of the ways that Steven does therpy is to play the wii fit. It has a balance board that can feel where his center of motion is and if he leans to one side or the other. It is really a brilliant therapy tool--he can tell that he is getting better because it gives him a score and even tracks the scores. Also, there are many games that encourage him to lean to either side or to balance in the center--like the snowball fight or the hula hoop. That way he can try to beat his old score and try harder.

So, my really sad story beings with the wii fit. He had done an intense morning of physical therapy and had moved onto the wii fit. At some point, Andrew (the little brother), nudged him with his foot (probably trying to prevent him from getting the high score) and tipped Steven off of the two inch balance board. Steven started screaming like crazy and the long story short is that his leg is broken.

Okay, so how embarssaing is that to break your leg playing the Nintendo? But beyond embarassing, this is going to be a huge setback for physical therapy. When will he walk? Suddenly I know that it won't be in the next month. Or maybe many after that.

This is upsetting in so many ways. I cry every time I think of it. Is he that fragile that a little upset like that will cause such a huge setback? Are his bones weak from so many months of underuse? How will he trust his leg now? What will his muscles do? This has been a fear of mine from the beginning. He has had several falls, none which resulted in breaks, but they still set him back a while. His last fall before this made me really consider the mechanics of it. I mean--think of how his prosthetic can act as a lever to cause some serious damage if he were to twist it. It makes me worried--wondering if this could happen again.

Rob spent half the day at the ER with Steven. What he has is a compression fracture inbetween two of the screws in his leg. The docs at the ER wrapped his leg in a splint and told us to give him pain medicationas and to see his orthopedic doc on Monday. We will have more answers whenever we see him--like when will he be able to put weight on his leg? I wish we could hear the answer to this one, "When will he be walking?"