Lots of updates! Follow-up in Cincinnati, Shots round 12, killer on loose & weekend in the mountains

Wednesday was Cameron's appointments in Cincinnati.  First, we went to the Rheumy office at 9am.  Then to Ophthalmology at 10, back to Rheumy at 11 for physical therapy then to the lab for blood work.  It was 1 PM before we got out of there!

The Rheumy visit went pretty well...  There was some slight swelling in his right knee again.  He is growing and she wanted to make sure he was on the right dosage of his meds so we ended up increasing the Enbrel from 25mg to 30mg... doesn't sound like that big of a deal huh.... Oh but no, just that 5mg means he now will get 3 shots per week instead of 2.  He was already on the max dosage of Methotrexate (25mg) so that stayed the same.  We doubled the folic acid to 2mg per day and she also added Zofran 4mg to be given 30 min prior to shots and then the following morning and again 8 hrs later if needed.  The zofran is an anti-nausea medicine.  He has started saying that just seeing the shots makes him feel like he is going to puke.  The nurse told me that it is very common to hear that from the kids and said that even though it sounds psychological, it will manifest into physical symptoms and he will actually get to a point of throwing up.  She also said it should help with those horrid headaches he gets the day after the shots.

The Ophthalmology visit also went well.  They checked his eyes thoroughly and there were no signs of any inflammation or problems.  She even looked to see if there was anything that could be causing his headaches.  She didn't find anything.

When we went back downstairs for the physical therapy appointment, we found out that he needs orthotics in his shoes due to him being flat footed!  She went over some exercises we are supposed to do daily (I had totally forgotten about these!) and fitted the orthotics.  They just had to be heated and then molded to his feet.  She warned us that for the first little bit, it would feel like rocks in his shoes and he would complain.  They have to be trimmed to fit his shoes.  I was getting ready to take him to get new shoes so I asked her not to trim them until we got the new shoes.  We got the shoes the following day and sure enough, as soon as he put them on, he started complaing.  He had a royal meltdown over how bad they felt.  He kept saying they were in the wrong place and everything.  It took him about 30 minutes to stop crying.  To get his mind off it, I took him to Target and got one of the big carts that has the seat for older kids.   We went to toys and I gave him a pen and notepad and told him to write down ideas for his birthday.  By the time we left, he was totally fine with the orthotics and didn't say another word.

The blood work all came back good.   His sed rate is what they look at as a marker for inflammation.  In October it was 51, December 40, Feb 5, and March was 4.  Normal is 10 or below.  So for the April visit, the number had gone back up to 10... still normal, but with the swelling around the knee, it was expected to be up just a little.

On Thursday morning, a prisoner was being transported through our county.  He escaped about 2-3 miles from our house.  This man was involved in the drug mafia in Massachusetts and was convicted for taking part in the murder and dismemberment of a 19  year old girl.  He somehow got out of all his restraints and kicked out the door of the van he was being transported in.  This happened within about a mile of the middle school.  All schools were put on lock down around 11 or 12 am.  We got a call from the superintendent saying the school buses were not going to run, all kids had to be picked up in person at the schools and expect to show an ID.  It was crazy!  The school handled the chaos very well and I am very proud of the administration of our schools.

Since I had to pick him up, we went on into Lexington to get away from the craziness and also pick up his new shoes.  The man hunt continued.  Then on Friday, the school buses ran, but the schools remained on lock down.  Kids were allowed to move around inside the schools, but no one was allowed outside.  I went to Lexington that morning to run some errands and got home about 2:40 to find helicopters flying over my neighborhood!  The bus normally comes right about 3pm and it didn't come until almost 3:30.  Apparently, the convict had been spotted at the Dairy Queen next door to the high school so the schools were all holding the kids.  My house as the crow flies is less than a half mile from the DQ!!  Once Cameron got off the bus, we got our stuff together and drove to my Dad's house in Eastern KY.  We got word from neighbors that the helicopters were flying all over, along with US Marshalls on 4-wheelers looking around our area, they were even looking in all the drains.  They finally picked the guy up Saturday evening!  He was still in the same area around the DQ and high school!

I gave Cameron's shots Friday night while at my dad's house.  He did fine with the additional shot.  He didn't mind the zofran too much either.  I also started him on a flintstone vitamin and claritan since his allergies are still acting up.  He didn't have many side effects this time.

On Saturday, I took Cameron and my dad up to the Breaks Interstate Park http://www.breakspark.com/  It was beautiful!

 Cameron and his Papaw.  Of course, Cameron had to close his eyes!

Notice the little round area near the bottom of the picture... there is a grave marker there for an unknown soldier from the Civil War.  The road you see takes you into the park.  The next picture was taken from that pull off area at the grave, looking back up to where this picture was taken from...

And just a little more zoomed in....  we were standing by the rail fence.

Spring break and Shots, round 10 and round 11

Ok, took a little break....   here's what's been going on.

For Spring break, Cameron and I left on Sunday afternoon after church and went to French Lick to meet the family for a couple nights.  Cameron, Meredith and Natalie (Will's brother's kids) had a great time playing together.  They swam, rode go carts, bowled and rode ponies.

Once we left there on Tuesday morning, we drove about 3 hours and visited one of my college room mates, Melissa and her family.  She has 4 kids so there was a total of 5 kids between the ages of 6 and 10.... and only one girl.  The kids had fun together...  (Kris was playing computer games so he isn't in the picture)

We stayed with them Tuesday night and left Wednesday about 8pm to drive about 2 hours to stay with Will's Aunt Shelia.  On Thursday, we went to pick up Cameron's great grandmother and had a picnic with her (on her front porch).  Then we went back out to the farm where Cameron had help flying a kite and also got to fish in the lake.  He caught several bluegill and the funniest thing... he hooked one under the fin somehow! 

We came home in time to give round 10 of Cameron's shots on  April 2nd.  Usual headache and not feeling well first thing Saturday morning, but wasn't too bad.   Sunday, April 4th of course was Easter.  Cameron and I went to church and really enjoyed it.  We came home and got Will and went to Golden Corral to eat.  We left there and went to the Lexington Cemetery.... yes, a cemetery.  That place is more than a cemetery, it's also a place where people go to take pictures, feed the ducks/geese/koi and just relax.  The flowers were BEAUTIFUL!  Trees and everything was in full bloom!

This week was very nice!  Our high got up to about 84*F!!   Cameron got off the bus both Monday & Tuesday and stayed outside until time to come in and eat.  He played with some kids from the neighborhood and had a lot of fun!  It caught up with him by Thursday as he took a 3 hour nap after school.

We gave round 11 of his shots tonight (April 9).  He said it made him sick at his stomach to just think about the shots.  He did ok and promptly fell asleep in MY bed watching boomerang.  That kid is heavy!   There is no lifting him and taking him to his bed anymore.... he's gotta walk!    Speaking of him being heavy.... it's hard to find "Fatty tissue" to give his shots in!   He is solid as a rock!  We gave up trying the abdomen.  We do arms (tonight) and legs (last week).

Cameron's follow up appointments are next week in Cincinnati.  We are staying overnight in a  hotel since the appointments are at 9am and 10 am.  Hotel has an indoor pool so I'm sure Cameron won't mind.


Till next time!!

Shots, round 9 plus more!

First of all, we got the lab results back from Cameron's blood work.  Everything was in the normal range and his sedimentation rate was 5 (under 10 is normal) so things are working!

Cameron got a new cousin this week as well.  My cousin April was sent to Lexington from Eastern KY to have her 2nd little girl.  I got to be in the delivery room (a first for me) to take pictures.  Let me just say, it's an amazing thing to hear a newborn take it's first breath.  Cameron got to hold her before she was 2 hours old.  He couldn't get over how little she was (6 lbs 14 oz).

The next day, he got to go back and see her and feed her!! He had never done that before either.

After visiting the baby, we got something to eat and came home.  It was just after 10 PM when we got the numbing cream on him for his shots, so it was close to 11 before he got them.  This time, Will missed the numb area and started to give the shot.  He had barely touched the needle to Cameron's skin and Cameron started getting upset.  He moved it to where it was numb and then he was fine.

So far today, he has not had the headache like he did last weekend.  He's kinda mopey but not bad.  He's on Spring Break this week so we're going to take it day by day to see what we do for the rest of the time he is off.

The end of bowling for the season!

Today (Saturday) was the bowling banquet.  I was nervous at first this morning because he woke up with one of the worst headaches he has had since starting the shots.  He said if he moved his eyes side to side it hurt really bad.  Luckily, by the time to go to the banquet, he was feeling better.  It seems like his main symptom from the shots so far has been the horrible headaches.  All the other problems have been minor.

Cameron's team was 2nd place for the season which started back in September.  They were supposed to bowl against their coach but due to some scheduling problems, that had to be scratched.   Cameron ended the season with an average of 85.  He got a trophy for the 2nd place finish and two patches, one for getting a 350 series and one for getting a high game of 125.  He also got a wooden bowling pin about 3 inches high with his name and high game score.

Here are the boys before trophies were handed out:

Here they are getting their trophies:

And finally, posing with their trophies!

We ended the evening at Will's Mom & Dad's house watching the UK game and also keeping an eye on the Shelby Valley game!!   What a night for Wildcats!!

Shots, round 8

Today was a day off for Cameron.  KEA day for professional development for the teachers.  We took it easy for the first part of the day, staying in PJ's till past noon.  About 3:30 or so, we got his friend Erin from across the street and walked up to the park.  They played and had a great time and we came home around 5:30 or so.

Will was playing with the pipe band at the Paddy Wagon Irish Pub in Richmond so he went there straight from work.  I got the numbing cream on Cameron about 6 PM and we did the shots about 45 minutes later.  He was so funny.  He kept telling me that he didn't want to see the syringes because it would make him feel worse...  So, he covered his head with his shirt so he couldn't see.  As I was giving them, he kept saying "make sure you pinch the skin up, make sure its at an angle, etc"... can you tell he listened when the nurse was instructing us on giving them??

After giving him the shots, I attempted baking a cake in the bowling pin shaped pans that I have and planned to bake the ball to go with it in the ball shaped pan I have...

well...... it didn't turn out the way I wanted.  The neck and top part of the pin are very hard and the big part of the pin is nice and soft.   I didn't even try to use the ball pan.... instead, we made a trip to Kroger and got an angel food cake, strawberries and strawberry gel and whipped cream to make a strawberry shortcake.

Speaking of Kroger, for the first time, we found the small kid-sized shopping carts.  Cameron thought he was pretty cool getting to push that around the store!  Luckily, no ankles were damaged.

On the way home, I let him pick supper.  We stopped at Little Caesar's pizza and got a thin crust Meatsa pizza.  Once we got home, I told him to put down a blanket in the living room and we would eat there.... his face lit up and he said "Now you're talking my language!".  He LOVES having picnics!  I told him it was our 2nd Friday date night!  Will had something going on last week also so we had gone to McDonald's and a movie.  This week, it was a picnic in the floor with pizza and gatorade.

Yesterday (Thursday) after school, I took him to labcorp for his 2nd blood draw.  This is something we are doing every 4 weeks to watch to make sure the medications he is on are not damaging his liver and also to make sure they are doing their job, reducing the inflammation.  We should hear next week on those.  He had the ladies laughing.  His comments are just so atypical for a kid his age.  He asked them to not use the blue noodle thing they put around the arm.  I put the numbing cream on his arm before we leave home so the actual needle doesn't hurt, it's just that band they use.  We are lucky and have two women there that try to accomodate him as much as possible.  They only use the butterfly needle and are really good with Cam.  She said she would try without it as she had felt a good vein.  She got it!  He was happy.  He kept giving his puppy dog whimper when she was drawing the blood and after we were done and in the car, I asked him what that was all about.  He said he was waiting for it to start hurting any second.

Tomorrow (Saturday) is his bowling banquet.  I'll post with pictures later this weekend.  He gets to bowl a game to see if he can beat his coach and if they do, they will get a special patch saying "I beat my coach".

Thanks to everyone who is reading this blog and keeping up with our journey.  We truly appreciate it.

Shots, round 7

We are doing Cameron's shots on Friday nights now in order to give him more time to recover before school on Monday.  We had been doing them Saturday afternoon to give him a chance to do the bowling league on Saturday mornings.

Last night, Will was going to play bagpipes for a party and would not be home until late.  Cameron doesn't trust me to do the shots and wanted his daddy to do them.  I think it's because Will has been diabetic for over 20 years and Cameron thinks he knows what he is doing.

Anyways,  I got the numbing cream on Cameron at home and drove to Lexmark to meet Will before he left to go to the gig.  He came out to the car and I had both of the injections ready and waiting.  Cameron said one hurt just a little bit this time but no tears.

Will went on to his gig and Cameron and I had a "date night".  We got something to eat at McDonald's and then went to see the Alvin & the Chipmunks movie at the discount theater.  Cameron laughed so hard and really enjoyed the movie!  It made me feel good to hear such laughter coming from him.

On our way home, we stopped at Kmart to pick up a couple things and he wanted to play his DS game so he took it in and rode in the basket part of the shopping cart.  While we were there, the shots hit him like a mack truck.  The kid couldn't hardly hold his head up.  We got home and he tells me he is sick at his stomach and didn't feel good.  Once again, I heard what no parent wants to hear or has an answer for...   "I wish I had my old life back where I didn't have to feel so bad all the time."  The only thing I could say was "So do I".

Today (Saturday) was the St Patrick's Parade in Lexington.  Since I can't make rehearsals and have Cameron to take care of, I don't play with the band much at all.  Cameron and I have carried the banner in front of the band before and that's what he wanted to do today.  However, he forgot his warm coat at home and it was cold and windy out there.  He was also still complaining of a headache and his stomach was upset.  Will's parents came to the parade so Cameron stayed with his grandfather and got candy that was thrown from the floats.   I think he got the best deal!   The parade was long and slow this year.  We had to stop several times.

After the parade, we went to a party hosted by drummer Barry Miller from the band.  Fun and food was enjoyed by all.  By this time, Cameron was feeling much better and acted like nothing had ever bothered him.

Shots, round 6 and BOWLING!

 

First, let's talk about bowling!  On Saturday, Cameron had his last day of regular bowling for the 2009-2010 season.  They divide the season in half and the winner from the 1st half has to bowl against the winner of the 2nd half of the season.  When we got there, the coach told us that Cameron's team was tied with another team for first place and if they were tied by the end of the meet, they would have to have a "roll off".  All 3 boys got excited and did very well.  We won both of our games and the other team we were tied with lost one of theirs.

Today (Sunday) we had to go back to the alley and do the game against the team from the 1st half.  We were supposed to be there at 1 PM.  Of course, you have to remember that Cameron gets his shots on Saturday and has been feeling bad most of the day on Sunday due to them.  We rushed straight home from bowling and had the shots done by 12:30.  He is starting to be more and more afraid of the shots and it takes a bit more coaxing on our part to get him to let us give them.  

After the shots, he had a friend from across the street over to play Wii with him.  After they were done here, he went to her house and played there for a couple hours.  I think having someone to play with took his mind off the side effects of the shots and made them more tolerable.  Erin has lived across the street since they were both babies.   She is in the same grade as Cameron.  She and her family have been very nice to us.  If Cameron has to miss school, they will send his work home with Erin and then her parents will get it to us.  We've also had to copy homework pages from them that have been forgotten at school.  We are so blessed to have neighbors as nice as they are!

I put Cameron in the bath and let him play for a few minutes.  When I went in to get him to get out, he said he had dozed off in there!!  Silly boy!  I could see in his eyes that it was starting to hit him.  Got him out and tucked in under his electric blanket and off to dreamland he went!

This morning, he seemed to be feeling ok and since I knew we had to be at bowling by 1 PM, I decided we would also attempt going to church again.  He did great!  The church changed the theme and today was the first day.

The room looked like a barn!  When Cameron saw it, his eyes got really big and he looked at me and smiled.  There was straw all over the floor and bales to sit on.  When I picked him up, he said he really liked the new theme and was excited that one of the verses they studied was one that he remembered reading on his own.

So, we get to bowling and find out that one of the boys on Cameron's team was home sick with a fever and strep.  They took his average and subtracted 10 pins and that was the score for him for each game.  Cameron didn't do as well today as he has recently (79 and 84 I think).  The other team did really well!  I think all three of them had either their highest game ever or at least close to it!  Not saying Cameron and his team didn't do well...but the other team just really had it together today!  

Cameron got really upset that his team didn't win.  He really has not dealt with much competition like this before and didn't take it very well.  I had to really talk to him to stop the tears and bad sportsmanship he was showing.  It's a tough lesson to learn I know.   2nd place out of 12 teams is something to be proud of!  The team will get trophies at the banquet on March 20th.  I think once he gets his trophy, he will feel much better.

Till next time..................