WOW! Where'd summer go?

I can't believe I haven't posted since MAY!  I apologize!

School has started and Cameron is now in 4th grade!  He also started at a new school!  The kids were tested in 3rd grade and Cameron was selected to attend the GATE program (gifted and talented education).  This means he would move to another school in the county (which is actually closer than his other school!) and would be in a classroom consisting of other children who also tested into the program.  I was surprised to find there are only 15 children in the class and only 6 boys.  He seems to like being in the new school and has made friends.  He likes his teachers so that's always a plus.

First day of school picture:

So, where do we stand with arthritis?  Well... things got crazy in the summer.  He was vomiting EVERY Saturday for about 7-8 weeks.  He also started complaining about the injection hurting.   It took a while, but I figured out the vomiting was from the zofran he was taking... yes, zofran is supposed to STOP vomiting and nausea... but he vomited almost immediately after taking it.  We stopped the zofran and he stopped vomiting! 

I also figured out the pain with the shots.  The pharmacy told us the methotrexate we had been getting that comes in a 2ml vial WITH preservative was on back order and they could not get it.  They gave us a different vial WITHOUT preservative.  We used this for a total of 8 weeks.  During that time, he would complain more and more of it hurting when he got the shots.  It got so bad that he would almost hide from me when it was time to take his shot.  I tried all kinds of different things to make it better.   I was talking to someone I met online who is an adult living with arthritis and she was the one to tell me that the one WITHOUT preservative stings like crazy!   If you remember, when we first started the injections, we got the Enbrel with preservative and it was the one that hurt.  So now, we have to get Enbrel WITHOUT and Methotrexate WITH preservatives.... confused yet?

We had a pretty lazy summer.  The biggest news is that we got Cameron a dog!  Her name is Margie and we brought her home July 25th.  She is wonderful!  He plays and runs with her in the yard almost daily!  It is so nice to see him out and running.

I'll try to update more often.  Thank you for taking time to keep up with us on our journey!

What a week!

Tuesday afternoon, I received a call.  It was my mom's number showing up on my caller ID, but it was my cousin April.  She tells me she has called an ambulance for my mom.  She was shaking all over, weak and complaining of chest pain.  If you remember, she had a heart catherization on May 5th and had just gone home on Friday the 7th.



They checked her out at the ER close to where she lives and I expected a call to say they were transferring her back here to the Dr who did the cath.  That call came from mom about 7:30 on Wednesday morning.  She arrived at the hospital in Lexington at 11:15 and I was waiting when they got there.  They took her in for another heart cath about 1:15 or so that afternoon.  Dr comes out and tells us she had a blood clot that had closed off the smallest of the 3 stents placed only a week before causing a heart attack.  He got everything cleared out and opened back up and she was admitted for 2 nights.

Thursday she noticed her left arm where the IV was had gotten sore and started to swell.  They did an ultrasound and found she had a small blood clot in there.  Of course, this terrified mom, thinking it would also go to her heart like the last one did.  She was very anxious and they gave her a xanax to relax her.  I had to come home to get Cameron from school.  My younger brother Andy was coming by after work to see her.  When he was there, they brought her supper tray.  She was shaking so bad, he had to feed her.  Of course, this added to her frustration.  Not long after he left, she called me crying and asked me to come back over.  It was around 8 PM when I got there and she was sleeping.  She woke up and was again very agitated and shaking.  I got her to calm down some and talked to the nurse to see if there was something that could be done.  About 9 PM she came back and gave her a dose of ativan in her IV.  Mom talked to me for about 15 minutes and fell asleep mid-sentence.  She had said something about April getting a caterer for a party and was begging me to get her sweet n sour chicken from the Chinese restaurant.  I stayed until about 11pm to make sure she was sleeping good and left instructions with the nurse to call me if she wakes up like that in the night.

Next morning, I went over after getting Cameron to school.  She had tried to wake up and eat her breakfast and spilled her coffee.  She was snoring away.  Her Dr had come in twice to talk to her and release her and each time she had gone to the bathroom.  Her lunch tray came and they had checked her sugar  (108) and given her insulin so I knew she had to eat.  I kept waking her up to take a bite and she would fall back asleep and her hand would fall into the mashed potatoes.  Finally I fed her to make sure she would eat.  The Dr didn't come back until around 1:40 PM.  He said she could go home but wanted to wait until she could wake up more.  I explained that I had to leave no later than 2:20 to be able to get home to get my son off the bus and that I could not bring him back due his suppressed immunity.  He agreed to go on and release her.  She slept the whole way home with me and got out and went straight to the couch and went to sleep.

She finally woke up around 6pm.  She was still shaky and very weak.  Cameron helped her eat her supper and was being a good nurse.  She slowly started gaining a little strength.  About 9 PM, she had been sitting on the porch talking to her sisters and other family members.  When she got up to come inside, I was following her and she passed out.  I had my hands on her to steady her and she actually slid down my side instead of falling hard.  I got her up (with Cameron asking if he should call 911 the whole time) and got her back on the couch.  Checked her cath site and everything and it all looked good.  She slept a little longer and I got her up to take her evening meds and insulin and go to bed.

In the meantime, I had to give Cameron his shots.  We are going to the Tuesday/Friday schedule for his Enbrel so on Friday, he will get 15 mg and on Tuesday he would get the other 15 mg.  He did OK with them and mom was glad she was asleep so she didn't have to see him take the shots.

Saturday morning, needless to say, we slept in a little late.  I got up and was making breakfast.  Will's sugar went low and he was treating that.  Then, Cameron started vomiting.  Then, mom gets up and has a LOT of blood in her urine!  Cameron's vomiting could have been from his shots the night before, but I really think it was from the phlegm from his allergies.  I went ahead and gave him one of the zofran pills we have.  We are supposed to give them 30 min before his shots and the following morning.

I took mom back to the ER where we stayed from about 1pm until after 5pm.  Blood work, urinalysis, CAT scan and a lot of waiting.  They said she had a severe kidney infection and sent us home with a prescription for an antibiotic.

After school on Monday, Cameron and I drove mom to Stanton (about 1.5 hours away) to meet Melissa to take her back home.  She had her eye swelling when she left and said it felt like she had fluid in her jaw and behind her ear drum.  We called the pharmacy and they said it could be an allergic reaction to her medicine.  She started 3 new medications on Saturday so it could be any one of the 3.  She called her regular Dr and was going there today to see if they could figure out which one and/or change her antibiotic.

Ok, enough about all that....  Cameron had a field trip yesterday to Fort Boonesborough.  He really had a good time.  They got to hear how soap was made and got to pass around a home made bar of it and smell the difference.  They got to hear from the gunsmith how children lived back then and what was expected of them.  They got to see how candles were made and Cameron was chosen to try his hand at dipping the candles.  I think the entire class liked talking to the guy who was fluent in Shawnee Indian and talked to them about different things incuding the powder gun, spear, hunting, his indian club and other things.  He posed for a picture with the class.

Near the end of the tour of the fort, they were in the gunsmith shop listening to his demonstration.  Cameron started putting his hands on the rail and pushing up to where his feet were hanging.  I was to far away from him to do anything and he was told several times by another parent to get down.  Once we got out, I took him aside and started talking to him about how he should not have been doing that.  He tells me... "Mommy, my feet were hurting and I was doing that to take a little of the pressure off them.  If I had sat down, I wouldn't be able to see."

SO..... I don't know for sure what to do with this.  If he had told me this in there, I would maybe have been able to do something.  If his feet were hurting, was it the arthritis or the inserts in his shoes or just from walking so much?  I guess I'm going to have to figure this out.  Wish me luck!!

Shots, round 14 & 15

Wow!  Didn't realize how far I had gotten behind in this!

Cameron had rounds 14 and 15 of his shots and seemed to do OK.  Round 14 was a little rough as he said he felt them and cried with them.  Round 15 was a little better, but he has 2 bruises still today (Tuesday) from the shots on Friday.  Not big bruises...

Last week was pretty eventful in our house.  As many know, Lexington lost a police officer in the line of duty.  He was killed on Thursday, April 29.  On Friday, Will was already scheduled to pipe for a training seminar for the Lexington Div of Police Honor Guard.  They had honor guards come from 3 states to take the class on how to handle a line of duty funeral.  Ironic isn't it!  They had the training at the same church and cemetery as they would have the funeral for Officer Bryan Durman the following Tuesday.  Will said those in attendance that were there to pretend to be mourners didn't do much pretending!

Will received a call from someone with the police department asking how many pipers and drummers he could get for the funeral on Tuesday.  We put the word out and ended up getting 14 pipers and 3 drummers, including myself.  We were at the cemetery from 12:30 that afternoon until after 5:30.  It was the most intense funeral I've ever seen!  It really took my breath to be marching in between hundreds of officers lining the road of the cemetery standing at attention and saluting.  I can only imagine how the family and friends of the officer felt.

That same day, my mom had to come to Lexington to have blood work done for yet another heart cath.  This is about a total of 14 heart caths she has had in the last 10 years.  Cameron and I met her at the hospital where she was with her boy friend and his family.  They went back home (3 hours away) and she came home with us.  Cameron was very excited to have his mamaw with us.   She and I left about 6am to get to the hospital.  She had the cath and they inserted 3 more stents into her heart.  This makes about 12 stents.  Pretty soon she will set off metal detectors!  She did well and spent one night in the hospital.

The day she was released, Will had been asked to pipe for the CPA (Citizen's Police Academy) cookout at the firing range.  Mom was feeling well enough and I knew she would enjoy seeing the ERU (Emergency Response Unit aka SWAT) demonstration.  Did she ever!  She had to have her picture made with some of the officers.

She also said she had never had a picture taken with her ONLY son-in-law.  Will was a bit confused at first thinking he wasn't the only one... but he soon realized he was!

Cameron also got his picture made, but with the sniper which was hidden up on the hill during the demonstration.  You couldn't see him at all until he started waving his arms!!  Check out the rifle!

Of course, Will had to have his picture made!   They do call the bagpipes a weapon of war!

This week, I decided to take Cameron to his allergist since the claritan was not doing any good with his allergies.  They gave us a prescription strength antihistamine to try and also two different types of nasal sprays.  We are to try the pill first and if that doesn't help much, add one of the sprays.

I also called to make sure about getting Cameron's blood work drawn.  When we started the Enbrel & Methotrexate, we had to go every 4 weeks to have blood drawn.  At his appointment in April, the Rheumy mentioned that if the blood work we did that day looked ok, she would extend the time to 8 or 12 weeks.  They called back and now he only has to have it every 12 weeks. We are also going to maybe change the Enbrel shots to give him 1/2 on Tuesday and 1/2 on Friday.  We'll see.

Shots, round 13

Cameron had round 13 of his shots Friday night.  Before the shots, we took him to Nicholasville to JD Legends restaurant.  I've heard about it, but never went there.  The food was good (plus we had a buy one entree get one free coupon) but the BEST thing (for Cameron) was that it's attached to Strike Zone bowling lanes!  He and Will bowled for an hour and really enjoyed it.  After their first game, they turned the lights down and started the Glow N Bowl or Cosmic bowling.  It was fun.

He didn't do so well with the shots this week.  Lots of tears even though we used the numbing cream.  I think it could have been the location.  We'll have to try again next week on another location.  If he complains then, we're gonna have to find out what's up.

We got another new cousin this week!   My cousin Alicia (more like a sister) had her first baby on Tuesday, April 20th.  Kerington Elizabeth "Keri Beth" Hignite was 7 lbs 6 oz and 20 inches long.  Mom and baby are doing great and Cameron can't wait to meet Keri Beth.  I went to see her the day after she was born and got this awesome picture:

School is starting the state testing tomorrow.  I'm hoping to get Cameron in bed a little earlier each night, but not holding my breath.  Last week was "spirit week" and he enjoyed that.

Today at church, Cameron decided his Children's minister is the COOLEST ever!  They have been doing the "On the trail series" studying about the Israelites  leaving Egypt.  The Children's minister came INTO church this morning ON A HORSE!  Yes, INSIDE!!!  How cool is that!  What kid wouldn't love it?  After church, the kids could go out back and pet the horse.  I'm so thankful we have such wonderful people at the church working with our kiddos!

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..................

Bloodwork #1

Due to the medications Cameron is on, we have to get blood work every 4 weeks to check his liver function and also keep watch on his sedimentation rate (shows inflammation).  I finally got the results of the labs that were drawn on Feb 18th.  Liver tests were all within normal limits and his sed rate was *4*!  In October, it was 50 and in December it was 41.

On another note, I took him back to the Dr yesterday due to the lingering congestion and cough.  She is treating him for a sinus infection.  Due to this, he will not be able to take his shots this weekend.  He has to have at least 3 full days of antibiotics in his system before taking the shots.  This would put us giving them to him on Sunday night or Monday, which would mean he would probably not be able to go to school the following day.  He is usually really "hung over" for the first 24 hours or so after the shots.

Shots, round 5 plus more

We had a very busy weekend!

On Friday morning, as Cameron was getting dressed for school, we had the tv on WLEX and Lee Cruse was at UK promoting their E-day.  Cameron went last year with his grandfather and really enjoyed it!  Cameron was excited and asked to go again so he wrote a note to his grandfather asking if he would take him again.  Cameron's grandfather is an engineer and got his degree from UK.  I think he's excited to see Cameron so enthusiastic to learn about engineering. 

 

http://www.engr.uky.edu/eday/2010/index.html

There was only one problem, it happened to fall at the same time as bowling league.  To remedy this, we decided to go Friday to pre-bowl for the league.  This is where he can bowl early and his scores will still count along with his team's scores.  The only time we could get a lane for him to bowl was 7:30.  There was a league going on at the same time, I think it was called the "Holy Rollers" league.  We had to be put on the end next to some people in the league.  They were a little apprehensive at first thinking he would be a typical kid and not show courtesy and just mess them all up.  WE were told on several occasions by them how respectful and courteous he was!!  Yay Cameron!   Also, he bowled a 102 his first game and a 108 his second game!  Was not his highest score, but with an average of 80, he did very well!

Saturday morning, Will and his father took Cameron to the E-day.  They all three had a great time together.  I went out with my aunt Deloise for some "retail therapy".  Later I joined up with the guys and they both got haircuts.  By the time we got home is was about 5pm.

We have to put the EMLA "magic cream" on him at least 30-45 minutes before giving the shots.  Also, one shot has to be kept in the fridge so we have to give that one time to come up to room temperature and it also has to be mixed.  The picture below shows what his "kit" looks like.  There is a vial with white powder in it which is the medication.  Then you see a glass syringe type thing in the middle. That is filled with a water-like solution.  The blue thing on the other side is the plunger that goes into the syringe.  There is also a clear adapter that you can't see very well.  We have to put the adapter on the end of the syringe and the plunger on it then attach it to the vial.  We push all the fluid into the vial and swirl (not shake) it for about 10 minutes until everything is dissolved.  After that, we pull it back into the syringe and it's ready to inject.

 

He had the shots in his arms this time.  I had him sit in my lap and kept his head turned away so he would not see the needles.  Will gives him the shots.  He got to get a bowl of ice cream after supper for doing so well with the shots.  I think I'm going to buy stock in Breyer's ice cream... he really likes the chocolate and looks like that's what he's going to want with the shots.   ;)  

 

Cameron is getting more anxious each time with the shots.  I'm not really sure why, they don't hurt he says.  He has said several times he wishes he didn't have to take these shots and he wanted to go back to his old life before he had to start taking them. What do you tell an 8 year old when they say this!?!   The only thing I can tell him is that he would be in much more pain much more often without the shots.

Side effects were not too bad so far this time.  He woke up with his "hangover" headache and feeling bad for most of the morning.  He's also getting more congested again and has started coughing a little.  I'm going to call his pediatrician tomorrow and have him looked at just in case.  He finished his antibiotics earlier this week for the ear infection.

Cabin Fever!

Ok, being out of school for snow is getting OLD! We are already into June. Hopefully there will be school tomorrow.

We go tomorrow to get his blood drawn. We will be doing this every 4 weeks for a while to check to see if the medicine is working and also if it is causing problems with his liver. I have plenty of the numbing cream so I plan to put that on his arms before we leave.

This week has been MUCH better with fewer side effects. He has complained several times of his ankle "giving out" when he was running through the house. I am not sure if it's due to the arthritis or the hypermobility. I guess I should let his Dr know the next time I talk to her.

I'll stand.

When my heart breaks in half and my strength cannot last, when I'm lost in this land and I can't see Your plan, when my world falls apart and the light turns to dark, when the clouds gather round and the storms overwhelm on Christ I'll stand!

Shots, round 4

Cameron had his shots again today... however, this time was a little different.  First of all, we switched from the pre-filled syringes that were stinging so bad to the kind that has to be mixed.  It was a little more work for us, but he said he barely felt a little tinge as he called it.   Secondly, his dosage of methotrexate was increased from 20mg to 25mg. 

Why you ask???   Well..... last week he started limping and saying his hip was really hurting.  It lasted for about a day to a day and a half.  He also complained of his neck hurting when he was doing homework.  He said it hurt to look down to do his work.  I put a call into the Rheumy office and was called back today at 1 PM (yes, on a Saturday).   She said that it is very common for kids with arthritis in their jaws to also have it in their neck.  She listed to everything I had to say and then asked how he was doing on the injections.  I told her the side effects have been minimal so far and he seems to be tolerating them well....except for the stinging.  She decided to go ahead and up the methotrexate.  If he is still having new joints hurt or if these don't improve in 3 weeks, we are to call her back.


Today was also bowling day.  He beat his high score yet again!!!   He bowled a 128 his first game and 81 his second game.  He really is doing well with the bowling despite the arthritis.  His Dr told us to keep him as active as possible except for contact sports.  We only have 3 more Saturdays to bowl and then the end of year banquet where they award trophies.

On a positive, Cameron got to spend some time with his cousins Meredith and Natalie.  Only problem is that Natalie ended up vomiting while we were there.  She had some congestion so I'm hoping that's all it was.  Poor little thing has been through a lot herself.  She finished her treatments for leukemia about 9 months ago and has done really well.  She's now in Kindergarten and LOVES school.

Maybe gonna get a good snow tomorrow night... we'll see.  I'm to the point where I'm tired of the cold and snow!

A trip to the pediatrician

I called the Rheumy office to see if there was a decongestant I  could give him for his runny nose.  They said I really needed to have him looked at by the pediatrician even though there was no fever.  So I called yesterday and got him in at 3pm. 

It was our first trip to the pediatrician since starting the shots.  My biggest concern was him being in the waiting room with all the other sick children.  When I signed him in, there were only 2 other kids in there and I told the receptionist he was on drugs that suppress his immune system.  She had us wait in the hall closer to where they come out and call your name.   We only had to wait about one minute.

Cameron has seen several doctors in the practice.  The one we normally see was not there so we had to pick another.  I picked Dr Beth Hawse who was the one that saw him when we went in about his knee and started the ball rolling on the arthritis evaluation.  If I'm not badly mistaken, she said that she has psoriatic arthritis.  Maybe that explains why we were sent for the evaluation so quickly...

So...  She looked him over and even checked his knees and ankles.  He had fallen at school and bruised one knee up pretty good and she made sure to check it for any tears or injuries that need to be treated... nothing there...thankfully.  Chest was clear and then she went to the ears.  Right clear.... uh oh... left ear is infected!  He had not complained a single time about his ear!   She said apparently he is not a complainer so we're gonna have to watch him closer.  If you remember, he didn't complain but a few times about his jaws hurting and come to find out, he already has some joint damage there!  Also, from what I understand, the drugs he is on will mask any fevers or other signs that tell me he is sick.

So, we get our prescription for augmentin, 750mg 2x a day... he was told to stay home one more day which ended up not being a problem with the snow out there.

Swollen eyes

 

 December 2009

February 7, 2010

Ok, as you can see from the pictures, Cameron's eyes are puffy and you can't see it very well in the pictures, but they are also bloodshot.  His nose has been running so there's some redness there too.

We got out of the house this afternoon for a couple hours.  While we were out, Cameron asked "Mommy, why can't I go back to my old life where I didn't have to take shots that make me feel bad all the time."   What do  you tell an 8 year old child when they ask that question??   I just told him I didn't know why things have to be this way either.  It's just something we're gonna have to deal with.

I may call the Rheumy office tomorrow about the bloodshot swollen eyes.   Hopefully it's just a cold.

Shots, round 3

 

Cameron had his shots this afternoon.  He did fine with the methotrexate.  The Enbrel (pictured above) really stung this time.  He had his shots in his tummy today for the first time.  We've now rotated all three sites (thighs, arms, tummy).  He cried for about 5 minutes and then whined for another 15 or so.  Of course I had to get him up in my lap for snuggles... those always make things feel better.  I'm so thankful he still likes to snuggle!

He had bowling league this morning.   Will took him and I stayed home.   Cameron bowled his best game ever!!  Previously, his high score was 121.  Today he bowled 126 and 96!!! (they do two games)  His average is around 80 so he did extremely well!!

Not now please!

Cameron is getting a runny nose.  I'm hoping and praying that is as far as it goes!  Gonna have to watch him closer than I normally would.

He really enjoyed the warm water therapy pool yesterday at the YMCA.  He had the shallow end of the pool to himself for about 45 minutes.  Then we picked up his dad at work and met his grandparents for supper at Golden Corral.

One more day of school this week and we're supposed to get a little snow on Saturday.  Right now, it looks like something is also coming down the pike for Tuesday/Wednesday time frame as well. 

Stop this ride, I want off!

We never asked to be on this ride!   However, it is a ride we must take.

Psalm 34:17-19 (New International Reader's Version)

Godly people cry out, and the Lord hears them. He saves them from all of their troubles. The Lord is close to those whose hearts have been broken. He saves those whose spirits have been crushed. Anyone who does what is right may have many troubles. But the Lord saves him from all of them.

A long winter's nap

He must have been totally tuckered out!!   I let him sleep until about 7 PM.  That means he was asleep probably 2.5 hours!

As I expected, it was hard to get him in bed... but he finally gave in.

He gets out of school at 12:45 on Wednesday...thinking maybe I'll take him to the YMCA to spend some time in the warm water therapy pool.

Tummy troubles and fatigue.

Cameron complained this morning that his stomach hurt.  It didn't seem like it was that bad so I told him to go on to school and to call me to come get him if it didn't get better.  He said it was still bothering him and he told a sub teacher about it, but apparently there was some miscommunication and she wasn't aware of the medications or the possible side effects.  He stayed the rest of the day at school and seemed ok when he got home.   He wanted to do his homework on my bed so I sent him in there to do it.  When I went to check on him, he was sound asleep.  This is so not normal behavior for him!   I think he may also be going through a growth spurt because his appetite has picked up some as well...  

I'm letting him sleep, but may end up regretting that decision later tonight.

Sunday 1/31

He had his shots about 3 PM yesterday.  So far, no side effects.  His appetite is better than usual, but I think he may be going through a growth spurt.  He has been in bed since about 8:40 and is still not asleep an hour later... UGH.

Our journey begins

In September, we noticed swelling in Cameron’s right knee. I took him to the pediatrician and they thought it was just due to him having strep a couple weeks before. They said to watch it and let them know if no better. Of course, it didn't get better so they sent us to see a pediatric Rheumatologist.


UK could not see us until February or March (this was the beginning of October!!) They got us an appointment at Cincinnati Children's Hospital on October 14th. This was a blessing in disguise! Since we’ve started down this road, I have been told many times by other parents of children with JIA that Cincinnati has one of, if not THE top Pediatric Rheumatology departments in the nation! We were immediately assigned an entire team of professionals including a social worker, physical therapist, nurses and of course Dr Esi Morgan-Dewitt. They did a full work up and decided to do a steroid injection into the right knee on November 5th. This required him to be put to sleep.

When we got there for the injection, the Dr examined him before doing the procedure and found the left knee to also be swelling. He was taking naproxyn 2x a day at this point. She decided to inject both knees and drew out about 8ml of fluid off the right knee. He did very well through everything. Our biggest problem was the meltdown on the way home once he finally got over the anesthesia and thought he was cheated out of the popsicle they promised before putting him to sleep. (He ate the whole thing, just didn’t remember eating it.) Needless to say, we stopped at Wal-Mart on the way home and bought him an entire box of popsicles!!

Our follow up was on Dec 23. We were given the official diagnosis of "Juvenile Idiopathic Arthritis". It is a life-long condition. There is no cure, but they can get him into remission which is not a permanent remission. He could have "flares" at any time. This also could affect his eyes. It could cause a condition called uveitis. Due to this, we have to be seen by ophthalmology every 3 months to have his eyes checked. No joints appeared to be symptomatic at the time so we decided on a "wait and see" approach.

About a week or two later, he started complaining of pain in his jaws and ankles. Normally, the few times he said his jaws were sore would not have caused concern. I probably would have ignored it. I called the Rheumatology office to get the results of the blood work back from the visit in December and found that his sedimentation rate (the test that shows inflammation) was still 4x the normal limits. I also mentioned the complaints about the jaws and ankles. They made us an appointment for Jan 20. At this appointment, we were trained how to give him injections of Methotrexate and Enbrel. The Dr also ordered an MRI of his jaw and stopped in to check him. She said she could tell the swelling was coming back in his right knee and both ankles were swollen.

Our first appointment that day was at 10 am for the eye exam which thankfully was all clear. We went to the Rheumatology office and did part of the visit and then left for lunch and came back for the rest. We didn't leave the hospital until 7:30 that night after the MRI.

On Saturday, Jan 23, Cameron took his first injections. He has to take one shot of each drug once a week. They gave us EMLA the "magic cream" as he calls it. We put it on where we will give the shot about 30 min prior and it will numb the area. He did great with the first shots. No tears at all (from him either). He had his 2nd round of shots on January 30. So far, no side effects have been noticed.

The medications can have severe side effects which can include nausea, mild hair loss, lowered immunity, mouth sores, fatigue, etc. The nurse told us "Chicken pox for him would be critical". We have to have blood drawn every 4 weeks to watch for liver damage (another side effect) and to see if the inflammation is going down. From what I understand, if he gets any fever, we will have to at least call the Rheum office and/or be seen by the pediatrician. So far we really have not seen anything.

The methotrexate is the same drug used to treat leukemia and other cancers... only he gets a much lower dose. We had to do a pre-authorization for the Enbrel as it is VERY expensive... $250 a shot! Our insurance finally approved it, leaving a co-pay of $125 a month. Our Dr’s office gave us a co-pay card that allows us to have no co-pay for 6 months and then pay no more than $10 a month afterward. It is distributed by the drug manufacturer. Truly a blessing!

We got the results of the MRI which showed inflammation in both sides of his jaw and the joint was starting to show some erosion (damage). The Dr thinks we have caught it early enough to avoid permanent damage to the joint. Time will tell.

So many people are praying for him (and us) and we very much appreciate it.