We took Parker in for a check-up with the rheumatologist…and the photo above is old. I never think to take pictures at his appointments. I thought we would be in and out. I felt like Parker was doing good. I did notice that he still limps when he runs, but figured he must still have pain in his knee, but he never complains about it. So, I told the doctor. Well, the doctor was looking him over and as she got to his feet, she noticed that the middle section of both of his feet were swollen. It was like that on both sides. Which, Okay…fine. Parker hasn’t ever complained about it, so I just thought maybe they’d do some more steroid injections, but it turns out it is a lot more difficult to treat than that. The portion of his foot that is swollen is not okay to inject with steroids because there are so many bones. Also, if we were to just leave his feet the way they are and let them be swollen, the bones would eventually fuse together causing Parker to be crippled, and he would possibly be in a wheelchair. Anyways, the doctors told us it’s not something to mess with and they treat it very aggressively. Our options were doing another shot on top of the one he is getting, which burns as it is injected. From what I understand it is quite painful. Or, if we didn’t want that option we could go to the hospital every 4-6 weeks, and Parker would get infusions. Well, it was a little hard to swallow. I was expecting everything to be good and to go home quick, but mostly I sat in the room trying to choke back tears….and I hope it doesn’t seem like I’m trying to make people feel sorry for Parker. He’s quite happy, and still runs and plays and is crazy. I guess it’s just crazy how things can be going so good for so long and then all of the sudden it all goes downhill. I know it’s just life. We have ups and downs. This stuff used to stress me out so bad, and I do get a little stressed still, but not like before. The awful thing about the shots Parker is getting is that it increases his chances of getting leukemia, and other types of cancers. I was really really hoping to avoid adding anymore medicines to his routine. I’ve even been playing with his diet, and trying to take somethings out and see if it would help. For now, we are going to try the “burning shot” on Parker. If he can’t tolerate that, we will switch to the infusions. And, I’m going to continue to play with his diet, so if we have “weird” foods when you come to our house, that is why. 

When we were at Goblin Valley, I noticed Parker wasn’t able to climb all the stuff Jaxon was climbing and I thought it was a little unusal. Usually Parker doesn’t let Jaxon outdo him. But, looking back, I really think it was because his feet were swollen.

On a different note, Parker celebrated his 8th birthday a while back. He wanted an angry birds cake. Scott got some awesome pictures of it that I wanted to post on here.

If you are wondering if I made the birds and pigs the answer is no. Those were puzzle erasers that I bought at target. I think all of Parker’s friends really liked his cake. They were impressed….I was pretty happy with how it turned out. and, it turned out to be really quite easy to make.

And here is Parker opening one of his presents. He got a knife for his birthday and I think he was pretty excited about that. Little boys+knives=heaven.

Close by our camping spot. There were lots of interesting rock formations.

For spring break we went to Goblin Valley. It was really windy when we got there. Scott found a site that he thought looked like would be a good camping spot. We started to set up the tent, and the wind was blowing super hard. He even put a huge rock inside of our tent to try and hold it down while he was setting it up. Well, the wind was so strong that it ended up bending some of the tent poles, and it actually snapped one of the poles right in half. Luckily there was a piece in with the tent stuff to fix it. We ended up moving from that spot, because it was too windy. Here’s where we ended up setting up camp. You can see some of the bent tent poles. It was so crazy.

Swasey insisted that both she and I keep our hoods on at all times.

Swasey danced the night away

Some of the “goblins” at goblin valley.

Berkley’s airplane

Crocodile Rock

Resting against the rock

Parker taking care of Swasey

Trying to be a climber like her brothers.

Swasey is SO loved. There’s always at least one brother watching out for her.

Walking around

Sooooo….the kids really wanted a fire, and we didn’t take any fire wood with us. So, Scott told them to gather some old cow pies and we could burn those. Keaton was extremely proud of this monstrous cowpie. Don’t worry, I made them all wash their hands really good after this activity.

In case you are wondering…cowpies burn really well and they don’t stink that bad. It was just kind of gross watching the kids gather them up. Every time they found one they would start yelling, and then describing how big it was.

Berkley found a race car

so then Jaxon and parker had to try out the race car.

They made it! Scott helped Keaton climb this little mountain. Keaton has a harder time climbing around on these mountains/rocks, but he was very excited to make it to the top. We even named the mountain after him…Keaton Mountain.

Keaton climbing a rock. He’s even using “lefty”. Look how nice and flat his left hand is.

There is nothing funner than standing really close to the edge of a cliff and making me freak out. I seriously can’t handle it when they stand close to cliff edges. It really freaks me out.

Scott and I

“Peace out!”

I <3 this picture. Parker has super sensitive eyes. The wind was blowing pretty hard and he kept getting dirt in his eyes. He kind of started crying and said he couldn’t see, so Jaxon went and put his arm around him and told him he would guide him where he needed to go. So cute.

She is so cool!

She was so tired here. She put her blanket on the ground in the dirt and then laid on it.

Wow, those are some rock climbing fools. No ropes even!

Okay, this is actually how steep it was. The picture before this one I turned the camera, and it made it look like it was a lot steeper.

Jaxon climbed all over everything. He is really good at climbing. Now that he’s a little older, I don’t stress out quite as much as I did when he was little. It’s actually kind of nice.

Parker climbing

Swasey in her little “chair”

My little “gimp” climbing. Climbing is pretty scary for Keaton. A lot of times he gets scared and tenses up, and when he gets tense the whole left side of his body just curls into a ball into his body. It makes climbing challenging for him, but he still likes to try. I liked this pic of him climbing on these rocks.

As always, Jaxon is taking care of Swasey.

Awwww…..love this pic.

Swasey trying to climb.

I must say, I really love goblin valley. If you ever get a chance to go there, I would say GO! It’s so much fun. It’s like a huge rock climbing playground. So much fun!

Just because I like the photo.

Climb on the table

Pull drawer out and get into it

Try to jump out of the drawer

Push a chair over to the counter, find a pencil, and drawer on the counter

At the sound of the bathroom door opening, run to the bathroom, grab the stool and push it over by the sink

Open the toothbrush drawer and start pulling out all the toothbrushes

Try out each toothbrush

Throw the toothbrushes into the sink.

Get into the garbage.

Pretend to be interested in the garbage

Be persistent about pushing the chair up to the counter. Try on Mom’s sunglasses.

Throw Keaton’s Pokemon cards on the floor.

Find some scissors…

Climb back on the table. Try to sharpen the scissors with a pencil sharpener.

After Mom takes away the scissors and sharpener, find a pencil and draw on Keaton’s paper.

After Mom takes the pencil away, try to stop Keaton from drawing anymore.

After mom moves the crayon bucket, get a chair and go over to the counter again. First, take the scissors out.

Use a pencil to stab and eat my food.

Find Berkley’s shoes and wear at least one of them. Be sure to hide the shoe from mom.

At the library find the computer and just start typing as many letters as possible.

Get the baskets and try to stand on them.

At the library when mom isn’t suspecting anything make a run for it.

Jump from the lovesac to the bench.

Back at home, push a chair back to the counter and climb on the counter. Try to pull out as much food as possible before mom notices.

Plan a sneak attack on Berkley and his ballon. Try to stab the balloon with a pencil.

Finish up Berkley’s lunch.

Use Berkley’s cup of water to style my hair.

Try to rock the little rocking chair while standing.

Try on mom’s shoes. If possible scatter them throughout the house.

All of the things listed above need to be done before nap time.

After nap time climb on the computer desk.

Attempt to climb the ladder on the bunk beds.

And, her to-do list goes on. But, it gets hard trying to take pictures of it all and not letting her hurt herself. I love the little monkey, but I get really excited about nap time and bed time.

One day Keaton said to me, “Mom you never let me invent things.” I wasn’t sure how to respond to that. But, Keaton got a lot of paper and scissors and lots of other tools for christmas. One day he went in his room and was in there cutting and taping for a really long time. I had no idea what he was doing, but he came out with this on. He made it all by himself. I didn’t know he was so creative. I guess I will try and not get in the way of his inventions in the future.

Another view….He said it was a T-rex costume.

Caught red handed!

Well, if she can’t climb on the counter, she’ll just climb up the chair.

Stop looking at me like that!

She fell asleep on my brother in law’s shoulder. I thought it was cute…and it’s proof that she does actually sleep in between all of her busy little things she has to do during the day.

Life has been rough for Parker the last little while. As soon as they took him off his arthritis meds back in October he had a flare. He also was having problems with his eyes. This time his affected joints are his knee, ankle, and thumb. They did steroid injections today in all 3 joints. He’s so funny, though, because the doctors kept asking him if any of those joints were hurting, and he told them no. Which that doesn’t surprise me, because at home, he’ll wake up limping so bad. It’s painfully obvious to me that his knee is killing him, and I’ll ask him if his knee hurts, and his answer is always the same, “No.” It’s kind of sad at the same time. He’s obviously hurting, but somehow he’s learned how to ignore the pain, and he goes on with his day. I watch him run and play after school, and his run is so funny, because of how bad he limps. But, he seriously never complains. If his knee wasn’t swollen and he wasn’t limping, and the only problem was pain, I never would have known. He’s only 7 years old, and he just deals with all the pain. I was trying to tell him today after they did the injections that it’s okay to tell the doctors or me if something hurts. I don’t think he cares though. I think he mostly just wants to play soccer at school with his friends. That’s all he cares about. He’s such a tough little kid.

As for a little update…well, here it is. After we took Parker in to see the rheumatologist a couple of weeks ago, they decided to do steroid injections since his knee is still super swollen, and there was actually another joint swollen. That was his ankle. And, then yesterday I noticed his thumb looked really bad. I showed the doctor right before they did the injections and since it was so huge they decided to inject his thumb, too. Also, in January we found out his eyes were flaring, too. Since the disease causes blindness if left untreated, they treat it agressively. He has steroid eye drops, and he’s also back on getting his weekly shot. For now we go to the eye doc monthly until his eyes have cleared up for sure. Hopefully the doctors can get it all under control soon. The poor kid just needs to be able to walk and run normally again.

Need I say more?

Swasey has become a pro at giving us the stink eye. If she doesn’t like what you are doing she will give you “the look!” Yikes, watch out!

I started walking the kids to school a lot. It’s been really fun. I actually look forward to the short walk to the school. In the pic above, Berkley kept trying to ride his scooter way ahead of me, and then he would lay on the ground and pretend like he had wrecked and he was unconscious. It was pretty funny, but I’m not sure what the people driving by thought about it.

Jaxon did a report on Nikola Tesla. If you haven’t heard of him, you should look him up on google. He was an amazing guy. For part of his project he was supposed to dress up as Nikola Tesla and the kids pretended they were in a wax museum while the parents walked by. I can’t believe how still those 3rd graders stood. It was amazing. Also, for part of the museum, the kids each had a paper in front of them that they were supposed to write 3 facts about the person they did the report on. In the book Jaxon read about Tesla, it talked about how Tesla really liked this female pigeon and he’d always go to the park and feed it and take care of it. The chapter did seem a little weird, but for some reason Jaxon became kept talking about this pigeon and how really wanted to write about that in his report. Tesla invented so many cool things, but one of the facts Jaxon wrote on his paper for the museum was “Tesla loved a female pigeon.” I was dying when I read it. I wanted to hurry and erase it and put something else. For the rest of the day all I could do was laugh. I still wonder what all the other parents thought about that as they read his little fact sheet….

Berkley learned some awesome dance moves

Scott made us an awesome Christmas tree. This has been my favorite tree so far. He made it out of some branches from another tree. It was perfect for our super small house. I definitely want a tree like this again next year.

Swasey has insisted on feeding herself, and she can take her bibs off. She has ruined tons of clothes. I guess I just need to get her down to her diaper everytime she eats.

Keaton had a dental check up and insisted on getting a mustache as his prize. I think he wanted to be like Jaxon, when Jaxon was Nikola Tesla.

Swasey didn’t want to be left out of the mustache contest. She kept trying to stick the mustache onto her lip, but the sticky stuff wasn’t working anymore, so this was the best picture I got of her.

Just some super cute little boys.

Swasey got a rocking chair for christmas. She likes to sit and read books in it.

Not sure what’s going on with the pic size, but the sad news for the end of the year was Parker. The doctors took him off his meds in October since he was doing so good. His eyes had been clear for 2 years, and his joints had been fine for even longer. By about Thanksgiving, Parker was running around in some shorts. I glanced at his knee, and thought wow, his knee is huge. I didn’t say anything to him. He acted fine, like it didn’t hurt, so I decided just to wait and see if he ended up complaining about it. A couple of weeks later he came home from school and said his knee was hurting, and his knee still looked swollen. He was still running and playing on it at that point. Right before christmas break it was obvious that his knee was getting worse, so I made an appointment with the rheumatologist for right after christmas break was over. He also saw the eye doctor that same day. And, not only was his knee swollen, but he had cells/inflammation in his eyes, and also precipitate in his eyes. It was a sad depressing day. Parker is now back on having shots weekly and this time the dose is double what he was on last time. For this month he has to have eye drops twice a day, and he’s also taking a steroid. We go back and see the eye doc the first part of February. The eye problem can be serious, because if they are unable to get his eye inflammation under control he will go blind, so when he is having flare ups, we have to go see the eye doc a lot. So, that’s where we are at now. I guess there has been one thing good come out of this. I have always felt like Parker never really understood why he had to have shots. He just knew every week we had to do it. But, now he’s old enough that’s he’s recognizing if he doesn’t have his medicine his body has problems. I really feel like he now understands why he has to have all the crazy medicines. Anyways, so that’s where we are with the little man. Hopefully the meds help and soon he’ll be feeling better.

Other than Parker’s problems 2011 was a pretty good year. Keaton is still doing awesome with all his rhizotomy stuff.

I hope everyone had a happy new year!!