We're going to DC!!!!

Our family was selected to receive a scholarship from the Arthritis Foundation to attend the Juvenile Arthritis Conference in Washington, DC!  We will be going July 6-11 to allow for some time to tour the area.

While there, we will get to meet other families who are also dealing with JIA.   Cameron will get to meet other children like him and will have a chance to do all kinds of activities.  While he is having fun, Will and I will get to attend networking seminars on topics such as pain management, research updates, physical therapy, "Getting Past Gridlock: Navigating School Issues" and many more topics.

On Thursday night, we will be entertained at dinner by the United States Marine Corp Silent Drill Team, get to meet and have photos taken with a NASCAR driver who has JIA (name has not been given yet), listen to legendary piano player Byron Janis who has suffered from Psoriatic Arthritis (the same type Cameron has) for 38 years, plus games, activities and lots more.

On Thursday, we have scheduled a tour of the Capitol through the office of Ben Chandler.  We are hoping he will be in his office during this visit!  We are also hoping to catch some of the other sites such as Arlington Cemetery, Vietnam Memorial, Lincoln Memorial, FDR Memorial (to see the statue of Fala, the Scottish Terrier), etc.

I plan to post some on the blog while we are there and also the Arthritis Foundation asked if I would blog for them to post on their website so other families can read what our experience was like and hopefully be able to attend next year!  (Rumor has it... it will be in Indianapolis, IN next year!!)

An update on Cameron's arthritis.  He saw the Rheumy this month and she found NO ACTIVE ARTHRITIS!!!  His blood work was also great!  She mentioned that if he continues to stay this way until his next appointment in September, she may consider starting to taper him off his medications!

Cameron's birthday just passed, my baby is now 10 years old!  We spent the weekend in Canada.  Will had a show he wanted to play in so we did that on Saturday and then spent 2 nights at Niagara Falls.  Cameron had a wonderful birthday!  We rode the Maid of the Mist boat, Journeyed behind the Falls and felt the Niagara Fury in a 4D attraction they have added since we were there last.

Cameron is standing at the top of the cliff over the Whirlpool area where the Niagara river comes down and makes almost a 90 degree turn, creating a huge whirlpool area.  This is an area that has seen many tightrope walkers attempt to cross... some were successful, some were not!

This was in the tunnel at the Journey Behind the Falls attraction.

 

This was on the Maid of the Mist boat.  Can you tell how excited Cameron was?

This is while waiting for the Niagara Fury 4D attraction to start.  Cameron would sit every chance he got to rest his feet and legs.  He complained of some pain, but we made it through!

 He got birthday cake at Swiss Chalet! 

The following day (MY Birthday!) we did the River Walk.  This takes you 23 stories down in an elevator and there is a nice walkway beside the river.  This river is VERY powerful!  HUGE boulders in the river making lots of rapids!  Will said it would be a class 5, if not class 6.  The view and the sound were AMAZING!!

My best birthday present ever!!!!!!!!!!!

WOW!

Where has the time gone!?  It has been a very long time since I posted on here!

Cameron started school as you know from the last post.  Things went well for awhile and then started going downhill.  As of today, he has missed 22 days of school this year.  He missed 7 days straight for the flu and has missed other days due to illness and Dr appointments.  A weakened immune system is NOT fun!

In October, we attended an AMAZING camp!  It is called the Center for Courageous Kids and is located near Bowling Green, KY.  It is a world class medical camping facility that provides a cost-free, safe and fun camping experience for seriously ill and disabled children and their families.  http://www.thecenterforcourageouskids.org/

The weekend was split between children with Juvenile Arthritis and Osteogenesis Imperfecta (brittle bone).  We had a counselor assigned just to our family.  His name was Sam and he spent a great deal of time with our family.  He showed us around and took great interest in getting to know Cameron.  Cameron felt like he had a best friend all weekend!  Here is a couple pictures of Cameron and Sam:

As you can tell, there is a bowling alley at the camp!  Cameron kept talking smack to Sam telling him he wanted to beat him at bowling.  Finally he got his chance, and yes, he beat him!  The other picture was taken at the lake.  Cameron and Sam took one of the Swan paddle boats out on the lake.  The pictures below are Cameron on the horse (of course).  After meals, they got up and moved around and danced and had a great time.  Cameron and Sam in the pool. Then there is a shot of our room.  We had our own bathroom.  The beds are bunked because this is normally a room used by counselors in the summer.  The door you see on the right by the chest is a connecting door to the room where the kids stay.  Those beds are not bunked and the kids also have their own bathrooms. The last one is a hayride!!

Here is a picture of the group of JA kids and families.  The children sitting on the front of the stage all have arthritis.  Their siblings are in the middle and parents are in the back.

Since this post is getting long, I'll stop for now and update more later.  Thanks for reading!!

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.