Tuesday, December 4, 2007

A big WOO HOO for Amanda...

I KNEW there was something I was forgetting! The last two weeks Amanda has gotten her methotrexate shots while she was awake! For the last 6 yrs, she would insist on having her needle while she was asleep because the thought of having it awake made her ill. A couple weeks ago, on Friday night, she asked if she could have it just before she went to bed. I said "Absolutely" and got everything ready. I gave it to her and she just looked at me and said "Is that it???". I think she'd truly forgotten how to have it awake and had exaggerated memories of how bad it was! She laid down and fell asleep with no problems. I'm so proud of her! This was always something that really bothered her and she's overcome it!!


Woefully behind in posting!...

Well, there hasn't been much to report - good or bad - so I'm woefully out of date on my blog!

Amanda is doing OK - still not 100% but better. She finds she has some discomfort towards the end of her four weeks between treatments. She went for an MRI last week - the right side of her jaw has been giving her trouble so the rheumatologist would like to see if it's moved to the other side. Amanda was pretty freaked to do it but, with her usual grace and courage, she got through it just fine. I'll touch base with the pediatrician on Friday to see if he got the results yet.

Other than that, just trying to get ready for the Christmas holidays! We have a pretty good blanket of snow on the ground now so hopefully it sticks around - no green Christmases here!

The one tidbit of news I have -- Amanda has been asked to be in a video the Arthritis Society is commissioning to raise money in a new fundraising initiative called The Competition for a Cure breakfast. We'll have a video crew following us around all day Friday - it's her treatment day so a good day for a photo op! She's totally psyched to be in it!!


Wednesday, September 5, 2007

An Amanda update...

Well, it's been a long time coming but we may actually be seeing some improvement!!

Amanda had an appointment with her rheumatologist last week and it was a good one. As Amanda likes to say, she never said "NO" so many times in her life - "does this hurt, does this hurt, etc" and she could answer no to most of 'em!

Her jaw is still quite sore - and now it's in both sides. However, the rheumatologist wants her to get an MRI of her jaw joints to see if it's arthritis in both sides or if the inflammation on one side is throwing out the alignment on the other side. She's also had something weird with her knee - all of a sudden, she'll feel a bulge out the side and her knee will lock and she can't move it. She'll massage it for a bit and then it seems to be better. The doc sent her for an xray - he seems to think a small piece of cartilidge may have gotten loose and is floating around and gets in a spot where it locks the joint. We did the xray in Toronto - the MRI will be done here.

The date for the third annual Amanda's Cruise for JA is coming closer and closer! Tim has been working hard at getting prizes for the raffle table - think he's got a few good ones! We've had some great sponsorship - a couple new companies are climbing on board to support us. I don't know the names -- all I know is they are companies for metal heads who love cars!!

That's it for now! Amanda goes for her fourth Remicade infusion tomorrow so hopefully I'll have nothing but good news from now on!!

Thursday, August 9, 2007

An Amanda update....

Amanda went for treatment #3 and we're hoping that it's finally working! We just got back from holidays in Niagara Falls and she was able to tromp up and down the hill a few times - of course, ice cream is a wonderful incentive!! She says her jaw is still sore but her ankles and knees are doing much better. So, we're crossing our fingers that this is finally starting to work!! We go to see the rheumatologist in a couple of weeks so we'll see what he has to say.

Keep your fingers crossed!

Saturday, July 28, 2007

Been a long time with no update!...

Not sure if that's good or bad. Just means nothing has changed. Which, I guess, is bad. Amanda had her second treatment the beginning of July and she's had no change in her symptoms. She still complains of sore knees, ankles, and now both sides of her jaw. We had an appt with a dentist this week and there was no evidence she grinds her teeth so this probably means the arthritis has moved to the right side of her jaw too. Sigh. It's getting a little frustrating and discouraging.

Amanda's next treatment is August 9th. And we go back to see the rheumy on August 30th so we'll see where we stand by then I guess. Until then, we're trying to enjoy our summer!


Tuesday, June 26, 2007

Treatment #1 is done!....

And it went pretty well. We got to the hospital around 8. By the time we got the drugs from the pharmacy, they weighed her and checked her height, and did her blood draws and blood pressure, it was close to 9:30 before they hooked her up. Shortly after they got her on the drip, the pediatrician came in to take a quick peek at her. And then the Child Life Specialist dropped in. Well, they treated Amanda so well, she's gonna wanna go back every week! They brought her in a quilt made by a volunteer quilting society. She gets to keep it. And then brought in a small stack of books from which she was able to select one to keep. They they plopped her in front of a tv with a ton of movies to choose from. If she would've gotten bored of the movies, the Child Life Specialist would have done something with her. She kept asking if there was anything she could do or anything she could get her. So she sat there like a queen while I got her a hot chocolate and a muffin and she watched movies! She was pretty wiped afterwards to she is spending the afternoon with her little sister at Grandma's. She didn't have any allergic reaction but I made sure to dose her with Benadryl and Tylenol before we went. So she goes back in 2 weeks. Hopefully, by then, we'll notice a difference!


Thursday, June 21, 2007

June 21/2007

A big freakin' WOO HOO!!! We got word yesterday that Amanda has been approved for Remicade. This is the medication that costs $40,000/year and is given by I.V. infusion once a month. We're absolutely ecstatic -- particularly Amanda. She's so looking forward to getting some relief. From what the rheumatologist tells us, she should feel the affects by her second infusion.

A little funny -- when we opened the original letter, it said Amanda had been approved for Botox?? When Tim called, they said "OOPS" and told us that, no, in fact she was approved for Remicade. Got a good chuckle out of that!!

Monday, June 18, 2007

June 2007

June 2007 – So I’ve pretty much brought you up to date on how things are so far. So it’s time to give a little more insight into why I’ve decided to do this blog. I have a bunch of reasons.

I wanted to put our story out there for any parent who is just embarking on this journey. I well remember how overwhelming I can be to hear this diagnosis and feel completely helpless to do anything. Yes, it isn’t the worst thing that could happen to her. And yes it can be controlled with medication. And yes there is ALWAYS someone worse off than you. But anything that makes your child different or makes their journey in this world a little more difficult than most people is something that can be very hard to grasp, accept, and move on from. And I wanted that parent, who felt like they were cast out into the deep wide ocean, to feel like there was a virtual life preserver floating out there for them. I was lucky enough to find a website full of mom’s who had some “been there, done that” experience and they talked me off the ledge more than once. So I guess I wanted the opportunity to “pay it forward”.

If I educate even one person who thinks that kids can’t get arthritis, then this blog will have done it’s job! On our first trip to Disney with Amanda in a wheelchair, a very sweet couple visiting from Houston with their grandson was beside us waiting for the parade – not sure why, but we always find ourselves talking with complete strangers in Disney World! She asked Amanda why she was in the wheelchair and Amanda told her. And she said “Oh, I didn’t know kids could get arthritis!”. I don’t ever want to hear that kind of phrase again! I work at the University of Waterloo and, every March, I organize a Two for Blue day – a day across campus that folks can wear blue and pay a twoonie (a $2 coin in Canadian currency) in support of juvenile arthritis. I’ve been doing it for 5 years and we’ve raised about $4,400. But, more important than any money we could bring in, the fact that we’re dispelling the myth that arthritis is an old person’s disease is my ultimate goal.

And lastly, it’s cathartic for me. You know, Amanda has had 25 doctors appointments since January. Pediatrician, rheumatologist, joint injections, opthamologist, optometrist, physiotherapist – you name it, we’ve been there. And my friends and family all make the appropriate comments – “Oh my gosh, I don’t know how you do it!”, “That poor kid!”, etc. But I don’t think ANYONE can truly get how devastating, insidious, and all consuming this disease can be to your life, your family, your sanity until they live through it. It is completely and utterly draining dealing with this on a day to day basis, particularly when Amanda isn’t feeling well. Some days, I’d like nothing better than to toss my hands up in the air and surrender – pull my head under my blankets and block out everyone and everything. Unfortunately, for Amanda’s sake, I can’t do that. She’s shown such strength and grace in dealing with this that for me to do anything less than her would be cowardly.

So where are we now. Amand is not doing well. The last set of joint injections, combined with the weekly methotrexate and daily naprosyn, really isn’t helping relieve her pain. At our last rheumatologist appointment in April, the rheumatologist suggested we try a medication called Remicade. Couple of hurdles – the drug costs $40,000/year to be on it. Well, Tim and I aren’t independently wealthy – we are what you might call independently poor LOL – so we’ve got two avenues to pursue to get this covered. One is our insurance. The rheumatologist sent in the paperwork for insurance approval and we’re waiting to hear from them. If they reject our claim, there is an organization called the Trillium Foundation which will cover extremely expensive medications. Apparently there’s something called a Section 8 we can apply for. Not sure exactly what that is – in the army, if you’re given a section 8, you’re crazy!! – but it’s a clause for special circumstances. The medication is given by I.V. infusion once a month – which means we have to sit at a hospital for a couple of hours once a month. Fortunately, we can do it at a local hospital. The other hurdle is it can take another couple of months before all the red tape is torn through and, in the meantime, Amanda experiences daily and routine-altering pain. She’s missed quite a few days from school, simply because she is so exhausted and sore. We had a chat with the physio about this – being in constant and chronic pain is draining in and of itself, but being in a significant flare is also strength sapping. Fortunately the school year is almost over and she has plans to spend the summer relaxing and trying to regain some strength and energy. Right now, Amanda has pain in both knees, both ankles, and both sides of her jaw. Somehow she still manages to put a smile on her face.

We’ve also gotten news that something very exciting is going on for Amanda. The Arthritis Society runs a series of marathons all over the world called Joints in Motion. Monies raised go towards research. Every runner picks someone they’re running for – someone in their family or a friend who has arthritis. Well, a woman named Linda contacted the local Arthritis Society office looking for someone to run for, someone to inspire her when the training gets tough. They recommended Amanda – so Linda will be running the Athens marathon in October for Amanda! For more information on the Joints in Motion marathons, visit http://www.arthritis.ca/local%20programs/ontario/jim/default.asp?s=1

So that wraps up things for now. I’ll be updating the blog when Amanda has an appointment or if something is going on – or if I just want to say HI!

March 2007

March 2007 – It is just like coming home! To hear the pilot say “Welcome to Orlando!” just fills my heart with pixie dust!! We were lucky enough to be travelling with friends of ours this time – they work at the same university as I do and one of them was attending the same conference as I was – so we knew we were in for fun!

Again, Amanda was confined to a wheelchair for much of the time we spent at the parks. And again she whined about it. And again I reminded her to suck it up, that it was temporary! We had some truly magical moments – a wonderful cast member named Alfred saving our seats while I wheeled Amanda to the washroom, Captain Jack giving pirate lessons and yelling at Amanda to say “ARRRRR”, incredibly solicitous bus drivers making sure Amanda was seated comfortably before letting anyone else on the bus. It was a great trip. In a year that was plagued with pain and grief, it was definitely the soothing balm our family needed!

February 2007

February 2007 – Here we go again! While Amanda seemed to have a little longer period of relief from the last injections, they certainly weren’t the cure-all they were in the past. So we were back for joint injections. The injections also had a purpose – we were heading back to Disney World in March! My office was sending me to a conference in Disney (those bastards!!) so Tim and I decided this was too good of an opportunity to miss so we were heading back. Guess the phrase I’ve seen on bumper stickers was appropriate – “Been there, done that, going back!”

Dr. Feldman scheduled the injections so we would have them just before we left for our trip. They were going to do both ankles and the left jaw joint again so we were back to the imaging department. Even though it wasn’t as scary for Amanda this time as it had been in the past, she still asked if I could go in with her and they allowed me to. We were back to 48 hours of no walking but Amanda managed to crawl on her hands and knees to and from the bathroom

September 2006

September 2006 – The second annual Amanda’s Cruise for Juvenile Arthritis was a great success, despite crummy weather! We held it at a conservation area this year which had some benefits and some pitfalls. The biggest pitfall was having to pay $300 out of the profits to use the space! The benefits was plenty of space for cars, easy to find, and close to the highway where the cars could “stretch their legs”. We had 30 cars join us, although only 17 went on the cruise and we managed to raise $3,400! That was due for the most part to family and friends buying raffle tickets – thank you Tracey and Will!! While not a great success for weather, it was still a huge success for raising money and awareness. Tim’s goal is to raise $10,000 in five years – it certainly looks like he won’t have any difficulty reaching that!! And we are so blessed to have family and friends who come to help us out. We rely on volunteers and we were certainly not disappointed! We had a couple of amazing students from a local high school who were a great help. We can’t even begin to thank our family and friends who spent the entire day helping out

Friday, June 15, 2007

March 2006

March 2006 – When we returned from our trip, we discovered that my dad had taken a turn for the worst. Dad had been diagnosed with esophegeal cancer the previous May. Because of his declining mental faculties, they decided not to operate. His surgeon figured he wouldn’t be able to handle it physically. And there was a very real danger that his memory and personality would not recover from the surgery. So it was decided Dad would undergo aggressive chemotherapy and radiation. He was hooked up with a PICK (sp?) line where he had a constant feed of chemo and went for radiotherapy. He finished his treatment just prior to Christmas and we were all very hopeful that his prognosis was good. Unfortunately, while we were gone to Disney World, Dad either had a stroke or his memory just collapsed entirely. He thought he was in Hawaii – not a bad place to imagine yourself since we were in the middle of winter. After discussing it with my mom and sisters, we decided that Dad needed to be seen by his family doctor. The doctor’s receptionist recommended we get him to the hospital in case he had a stroke.

This started a taxing six week decline in Dad’s condition. He was put in the hospital and they ran an extensive battery of tests. First, they ensured the cancer had not moved to his brain or anywhere else and those scans were clean. Then a friend of mine suggested it might be excess fluid in his brain. Your body normally produces cerebral spinal fluid. In some patients, that fluid builds up and causes symptoms very similar to Alzheimer’s. Some very significant differences, however, is a problem walking and incontinence. Dad had started to shuffle and seemed to lose his balance quite easily. They were working on some physiotherapy to try to keep him from losing his mobility but the treatment was sporadic at best. He lost a great deal of weight because he simply wasn’t hungry and wouldn’t eat. Every meal, one of my sisters, my mom, or myself would fight with him to get him to eat but, stubborn as he was, he wouldn’t eat unless he damn well felt like it! He still knew who we were but he was incredibly mixed up. Finally the hospital decided they had done all they can for him and he was sent to a palliative care centre. When he was moved, we were assured by his discharging physician that he would continue to receive therapy and the hope was that he could regain enough strength to move him to a nursing home. We had pretty much accepted the fact that he wouldn’t return home – Mom simply couldn’t care for him the way he was.

We were in for a very rude awakening a few days after his admittance to the palliative care centre. Apparently the portion of the centre he had been place was not someplace where they put people who were receiving treatment; it was where they put people to wait for them to die. Either the physician at the hospital had absolutely no idea about Dad’s condition, or he was deluding us and himself into believing there was a hope of recovery. A few days after his arrival there, we were told that Dad had 48 to 72 hours left. His organs had began to shut down and he was pretty much non-responsive. We made the necessary arrangements for his funeral and, later that day, Dad passed away peacefully. I’m glad he didn’t linger on in pain and confusion for weeks or months. And I’m grateful for the time we had to spend with him at the hospital – one of us was with him pretty much all day and evening. But he surely was taken from us too soon. He is sorely missed.

Later that month, Amanda went for yet another round of joint injections – this time, her left elbow and right ankle. It seemed like we were engaging in a futile exercise – the medications and injections seemed to make little difference to her condition. She never seemed to get a real extended break from pain or inflammation. As well, Amanda’s body was changing – she was no longer a little girl. She was certainly growing! So who knows what role hormones play in this disease. I don’t know if anyone knows. But it could certainly be a factor. And so we battled on. Amanda went through some periods of what I’m sure was depression – very tired and cranky and just fed up with everything. And I allowed her to feel like that. I figured she’d earned it. But I also made sure she snapped out of it and put things in perspective. Wallowing doesn’t help anyone and it certainly isn’t going to make a positive difference in how you feel. So she’d feel like that for a couple of days – tears very close to the surface, hair trigger temper – and then the switch would flip and she’d be back to herself.

January 2006

January 2006 – It’s time to comment on a part of my life that baffles many of my friends and family – my obsession with Disney! My husband and I are avid Disney fans and we both adore Disney World. Like any self-respecting fanatic, we are raising our daughters to have the same passion for Disney! This would be my 9th trip, Tim’s 7th, Amanda’s 4th, and Sara’s 2nd.

This trip was different for us than any other trip we’ve taken because Amanda was pretty much stuck in a wheelchair. The injections from August were either wearing off or they didn’t control the pain and inflammation as much as they have in the past. She had a fair amount of swelling and heat in both knees and both ankles. Anyone who has been to Disney knows that you can’t go there and not expect to do a ton of walking! Tim and I had a discussion with Sue the physiotherapist and she agreed with us that a wheelchair might be necessary. Extensive walking wasn’t the only concern. Standing in lines for any length of time would not be good for Amanda’s sore joints. So we booked a wheelchair from an Orlando-based supply company and they had the chair delivered and waiting for us at our hotel.

Now, I had extremely mixed feelings about doing this. I knew that, Disney being Disney, provision for wheelchair-bound guests would be outstanding. I felt extremely guilty putting Amanda in a wheelchair and taking advantage of that exemplary service. Anyone would look at Amanda and wonder what the heck she was doing in a chair. I know that it isn’t immediately obvious to anyone what is wrong with her. That’s one of the reasons this disease is so insidious – you can look perfectly fine and healthy on the outside but be in agonizing pain on the inside. I decided that I had to get over that guilt – no one does guilt like us Catholics! – and do what was best for Amanda.

Amanda wasn’t too pleased with parking her butt in the chair. But I gave her two arguments. We had spent a lot of money on this trip and I wanted her to enjoy it. While being stuck in a chair would be sucky, she also would not be getting too sore. What tends to happen is Amanda will get “over sore” and it takes a while before the pain subsides after we give her additional meds or ice/heat her down. I didn’t want her to overdo it and pay for it later. And my second argument was to put it in perspective. The only reason she was in the chair was because we were in Disney. Look around – there are more than a few very obviously disabled kids in wheelchairs who wouldn’t be getting out of them any time soon! So suck it up princess – you’re in Disney World!!

My assumptions about Disney service proved to be right – their treatment of Amanda was impeccable! While she was able to get out of the chair to transfer to the rides, every cast member we encountered made sure that it was done quickly and safely and with minimal bother. We were often able to take the chair directly to the seating area where there were benches provided for us while Amanda was able to stay in her chair. I can’t enough good things about them. They were awesome – certainly not treating her like she was disabled in any way. Our trip was amazing – weather was great, the crowds were low, and Disney magic was in plentiful supply! Unfortunately the clouds were gathering on our return.

October 2005

October 2005 – I’m not sure if it’s because Amanda thought she needed more of a challenge, but she somehow managed to sprain her knee. We were in Niagara Falls for a little get away when she somehow stepped funny in the hotel room and fell like a ton of bricks. She was unable to put more than very little weight on that leg. We made her as comfortable as possible, giving her Tylenol and ice packs and put her to bed with some pillows. We were heading home in the morning anyway so I guess we were just going to leave a little earlier than we thought!

We got back in to town and decided that we should probably get her checked out. Tim dropped us off at the hospital while he and Sara went to take the luggage home. I didn’t think four of us needed to spend hours in Emerg! After about ½ hr, the doc dropped in and I explained Amanda’s extensive history to him. He ordered some x-rays and we waited. When he returned with the results, he figured it was just a sprain. He offered to put a needle in her knee and drain some of the fluid – something I promptly declined!! We got her a set of crutches and headed home.

On Monday morning, I contacted both Amanda’s physiotherapist from the Arthritis Society and the rheumatologist. Sue from the A.S. came over a day or two later and checked her out, and gave her some stretches to do. We got in to see the rheumatologist fairly quickly. Amanda had a very noticeable contracture in her leg – she wasn’t straightening it very well. He got on the phone and called over to an orthopaedic surgeon at HSC who agreed to see her the next day. Tim took her back to Toronto where the surgeon said he also thought it was just a bad sprain and it would probably take a little more time to heal since she had a mild flare in that joint already. Apparently it takes months to get into see that surgeon so it was obvious Dr. Feldman pulled a few strings to get us in quickly!

It took some time – probably a good two weeks – before Amanda was able to get off of the crutches. And probably another two weeks after that before she was healed from the sprain. Well, gotta say one thing about that girl – she gives everything 110%!

September 2005

September 2005 – After months and months of planning, the first annual Amanda’s Cruise for Juvenile Arthritis (ACJA) took off! My husband took his love of classic cars and the encouragement of a bunch of motorheads from an online chat room devoted to classic cars and parlayed it into a charity car cruise with the funds donated to the Arthritis Society for juvenile arthritis research.

Our inaugural cruise started in St. Mary’s, just outside of Stratford. A man by the name of Fat Chuk whom Tim met on the chat board offered the use of his land for the cruise. He owns a car restoration company on a sizable piece of land where there was more than ample parking for all the cars. The day dawned bright and beautiful and the weather was ideal. We had 17 cars join us for a long drive taking the participants up through Grand Bend and Goderich. Tim did an awesome job raising prizes for the raffles and we got a ton of food donated. A great time was had by everyone – even me, who tripped carrying a cooler and sprained my ankle! We raised almost $1,300 which, for a first event, was pretty darn good!

August 2005

August 2005 – Sadly, the success we’d had with previous joint injections was not happening this time. And we also had two more joints crop up – her left ankle and the left side of her jaw. Her right ankle was still quite warm and swollen so the joint injection hadn’t alleviated the pain. As the rheumatologist explained to us, it’s difficult to inject in the right spot in the ankles. So he scheduled us for joint injections by ultrasound. The jaw is a joint where they always use ultrasound to inject. Because we were already doing one joint that way, they decided to do all the joints that way. This would give them a greater degree of accuracy in the ankle joint as well. This is done by a radiologist, not the rheumatologist.

When we arrived at the hospital, we had to go to a different area of the hospital – instead of the short stay unit, we had to go to the imaging department. As always, the staff there are incredible. This was only Amanda’s second joint injection in almost 6 years so she was still very apprehensive. She was immediately thrown into a panic when she thought I wouldn’t be allowed to go with her into the procedure room. That decision is up to the anaesthesiologist and, once we explained how distraught Amanda was, the doc OK’ed my accompanying her into the room. We met with a rheumatology fellow who informed me that, unlike weight bearing joints, the jaw does NOT have to rest for 48 hours! I took delight in winding Amanda up, telling her she’d have to shut up fro 48 hours straight! Luckily for her, the doc straightened me out!

When it was time to take Amanda in, we walked into the procedure room and she immediately freaked! The room was used for assorted procedures – CT scan, x-rays, etc – and was filled with some majorly complicated and expensive equipment! Amanda figured this was for her and she flipped out – she started crying saying she didn’t want to do it. I grabbed her face with my hands and forced her to look into my face and said “Give me your ears, and not your tears!! None of this equipment is for you! It’s for really sick kids!” She calmed down slightly and I held her hand while they used an I.V. to knock her out. Once she was asleep, I met up with Tim and we went to the surgical waiting room – after the procedure, Amanda would be taken to a recovery room before she would be brought back to the imaging waiting room.

Once she woke up, the volunteers took me to meet her where she was groggily calling for me. Once she was a little more awake and taking fluids, they moved her to the imaging waiting room. We hung out there for another 2 hours before they declared her alert enough to go home.

We only had one weight-bearing limb to worry about this time so it was a little easier to get her to and from the bathroom. She would hold on to someone’s shoulders and hop her way around. Unfortunately, that caused pain in her other leg so she resorted to crawling to and from the bathroom. Again, we got the wheelchair to get her out of the house. And, trying to make lemonade out of lemons, we decided to have a party! We had a number of families over for a swim and everyone took turns pushing Amanda around in her wheelchair. It helped make an otherwise pretty dull night a little more fun!

May 2005

May 2005 - We’re back on the roller coaster! Dr. Feldman started us back on methotrexate and we had the set of joint injections. I would like to say it was a pleasant experience but, alas, I can’t say that!! It was Amanda’s first set of injections when she was older – she is now almost 10 – and she’s old enough to be petrified, which she certainly is! It was almost as if she had never done it before. But, let’s face it, she’d been so small and it was long enough ago that she has no recollection of it all. We had an awesome anaesthesiologist who was very kind and compassionate and tried to get Amanda to relax. She was adamant she didn’t want “the mask” – the gas mask they use to get them sleepy enough they can insert an I.V. needle in the hand without any problems. He assured her that they could put her to sleep with just the I.V. which she was comfortable with. Fortunately, the procedure didn’t change – they allowed me to go in with her while they put her to sleep. She tried her best to put on a brave face but she was absolutely terrified. She clutched my hand as if it was a lifesaver that would pull her out of deep water. They wheeled us into the procedure room and I asked her if she wanted me to sing to her like I did when she was little. That made her smile so I sang what I did the first time we did this together – Part of Your World by Little Mermaid. Not to pat myself on the back or anything, but I have a decent singing voice and the anaesthesiologist asked if I’d consider coming in for every procedure to sing! The procedure took a little longer than usual – the ankle is a very hard joint to inject. There’s a joint that makes the foot go side to side and one to make it go up and down. The space where they have to do the injection is very small so they have to be very precise. They had to inject both joints and they wanted to be sure it was done right.

Once Amanda was brought back into the waiting room – really just a ward room where you wait beforehand and where you recover afterwards – it seemed to take quite a while for her to wake up. Fortunately they also gave her some Zofran so she woke up without nausea. Amanda was suffering from a bit of a chest cold and her oxygen saturation levels kept dipping below normal, setting off her monitor beeping. It was a bit scary to have a nurse and the anaesthesiologist hovering over her bed until she could consistently stay within normal range. After about an hour, she was able to breathe much better and she was more alert. Once she was able to take some fluids and we were sure she wasn’t going to vomit, we were allowed to go home. Of course, by that time she was famished so we stopped in the cafeteria to grab some lunch before heading home.

Now the other difficulty we faced was the heck do we do with her for the 48 hours she’s not allowed to walk – she had a joint injected in both legs?? When she was little, we could just carry her around. Well, my little girl was not so little anymore – she was almost 5 feet tall and about 110 lbs. Fortunately Tim is a big strong guy so he was responsible for carting her butt around for 48 hours. For the most part, we got her to stay in our bedroom – close to the bathroom and there’s a tv/vcr/dvd player in there. We also borrowed a wheelchair from my aunt – she belongs to the local Royal Canadian Legion club and they often have assistive devices for loan there. We took a trip to the mall just to get Amanda out of the house. We stopped and had lunch and rented some movies and spent a pretty quiet weekend!

March 2005

March 2005 – So, if you’ve been reading this blog, you may notice there is an almost five year gap between this entry and the last one. That’s because we had five years of peace! Amanda was in a drug-induced remission – her arthritis was under such good control, she had minimal pain and required minimal treatment. We did have one significant change to our family – June 7th, 2001 Sara Grace was born! Amanda had made me promise, from the moment that I informed her we were expecting another child, that it would be a girl. Well, I delicately explained to her that you get what God gives you and we can’t really put in an order for what sex we would like. We had tried for two years to have Sara – and had a miscarriage in that time period. It was just as we were heading into Amanda’s significant eye problems that it happened. I think God was trying to tell me I had too much on my plate to have another baby. I firmly believe that all things happen for a reason – even if that reason isn’t evident at the time and you really don’t care what the reason is because you’re too clouded with grief. Hindsight is always 20/20 and it probably was for the best. I don’t know how I would’ve handled Amanda’s surgeries with a newborn.

Anyway, back to Amanda’s story. We changed local opthamologists – I had no qualms with our former doc’s expertise. However, his bedside manner left much to be desired and I thought it was time we sought out a second opinion. A new opthamologist moved to town and we were informed he was accepting patients like Amanda. It’s often difficult to find an opthamologist who will take on children – not all will. I called his office and asked if we could just meet him – Amanda felt it was really important to find someone who she felt was treating her as a person, not just an eyeball. We arrived at his office and he came out and Amanda immediately felt at ease. He invited us to chat in an exam room and he spent most of his time speaking with Amanda, only speaking to me when he was asking a question she couldn’t answer. We thought that he was probably someone who we could work with – he wouldn’t be offended if we’d ask for a second opinion, who would answer questions without feeling we were questioning his authority or expertise, and who would take the time to ask “How are you?”, instead of just “How is your eye?”. He’s energetic and upbeat and isn’t afraid to send us to the pediatric specialist should the need arise. He was also willing to take Amanda off of her methotrexate. The uveitis was under such good control, and her joints appeared to be doing well too, he thought we could slowly wean her off of the meds and see how she tolerated it. We began the weaning process December 2003 and took it very slowly, decreasing her dosage by 2.5 mg (or 0.1 cc) every 12 weeks or so. She had her last dosage on March 18/05. Unfortunately, it wasn’t long after that where the joint problems reared their ugly head once again.

We had a regular check-up appointment with our local paediatrician in March and he couldn’t find any effusions (fluid and swelling in the joints) but Amanda was complaining of pain. Not long after that, we had an appointment with Amanda’s physio and she was able to feel significant fluid and swelling in her right elbow, left knee, and right ankle. Dr. Feldman was contacted and we were scheduled for another round of joint injections.

Wednesday, June 13, 2007

May 2000

May 2000 – Well, the saying “if it’s not one thing, it’s another” had new meaning for us come May. While the cataract surgery was successful and the uveitis was well controlled, Amanda had developed a significant glaucoma problem – her pressures were in the high 30’s to low 40’s. Not good! So we were scheduled for glaucoma surgery eight weeks after the cataract surgery. The good news was that Dr. Levin expected this surgery to be much less traumatic to Amanda’s eye so he didn’t anticipate a uveitis flare. The bad news was that we would again have to administer an eye drop once every hour for the first 24 hours. Sigh!

Surgery day arrived and it all went very smoothly. The surgery was done in less than an hour and Dr. Levin was confident it would be successful. I’m not sure why but Amanda seemed to bounce back from this surgery far quicker than the cataract surgery. Within an hour of being brought into recovery, she was up and talking and ready to go! When we were released from the hospital, we returned to the hotel where we had expected to have some quiet time – but Amanda had other ideas! She was ready to go for a swim and a walk to the Disney Store! She was also absolutely ravenous. She ate two plates of pasta – gotta love room service – and had ice cream at the mall! It was awesome to see her feeling so well with no light sensitivity. We had an appointment with Dr. Levin the next day and he gave us the all clear – the eye looked really good and there was no evidence of increased uveitis. He released us to the care of our local opthamologist and we could go home!

February 2000

February 2000 – Here we go, back to the Hospital for Sick Children! This time, we went to the day surgery wing, instead of the out patient clinic.

We arrived in Toronto the afternoon prior to her surgery so we could try to have some time to do a couple of fun things – swim, go out for dinner, stop in at the Disney Store in Toronto’s Eaton Centre. The doctor’s office instructed us to arrive at the hospital by around 8 and her surgery was scheduled for 10. We spent two gruelling hours in the waiting room - Amanda alternating between clutching me and crying and finding a new toy to play with. And, as these things happen, the surgery was delayed. So, not only was Amanda tired and terrified, now she was starving! We met with the anaesthesiologist and a wonderful nurse who would be taking Amanda into the operating room. Unfortunately, because Amanda was going into an actual operating room and not a procedure room, they wouldn’t allow me to accompany her. My poor little punkin had to face that long walk without me! Both of us were a mess – but Amanda managed to walk in there under her own steam. We were told surgery could take about an hour and a half so we headed to the cafeteria to grab something to eat. When we went back to the surgical floor, we went into the waiting room, staffed by some awesome volunteers. They record your name, the name of your child, and when they went in for surgery. When Amanda was in recovery and able to see us, they would call down to the waiting room and one of the volunteers would take us to see her. It seemed like an interminable wait! Dr. Levin and his assistant – a wonderful post-doctoral fellow who’s name escapes me – came in to see us to tell us it was all over and had gone well. Unfortunately, we still had a difficult road ahead of us. Amanda would need a steroid drop every hour, day and night, to combat the uveitis that can often flare when there is any kind of eye surgery. We also had to stay in Toronto for a couple more days so Dr. Levin could monitor the uveitis to ensure it wasn’t reaching a critical level. We thanked him and breathed a sigh of relief that at least the surgery was over.

Finally the call came that Amanda was in recovery and beginning to wake up. They only let one parent go in at a time and I’d be damned if I was going to let it be Tim!! Poor guy never had a chance! They did let him come in intermittently while I stayed with Amanda. She sure wasn’t a happy camper coming out of anaesthesia! They did give her Zofran – an awesome anti-nausea med that is part of their post-op protocol. When she was finally more awake and alert, she had absolutely no nausea. If I could’ve found the anaesthesiologist to hug him, I would’ve!!

After a few hours, we were allowed to leave the hospital. We went back to our hotel for a bit and relaxed. Amanda dozed off and on for a bit. We then decided to take a walk down to Eaton’s Centre for dinner at East Side Mario’s and a drop in to the Disney store. Well, we made the trip to the Disney Store without incident but we weren’t so lucky with dinner. Shortly after we ordered, Amanda was curled up in the fetal position with her head buried in the bench seat. She only had a plastic shield covering her eye to protect it, so she was able to see light – which was absolutely excruciating for her. We got our dinner “to go” and raced back to the hotel where we sat in a darkened room and Amanda again dozed off and on. She was none too pleased to be woken up every hour on the hour for a drop – well, truth be told, neither were Tim and I! It took two of us to give it to her – one to give the drop, and the other to hold her down! It was an exhausting night and morning broke with three grumpy people!

We returned to HSC for a check. Dr. Levin confirmed that, as feared, her uveitis had flared substantially and that was the main cause of her light sensitivity. He said, over all, her eye looked good post-operatively. We returned to our hotel where, much to Amanda’s delight, she was able to go for a swim as long as she didn’t dunk her head. We got some gauze patches to minimize the light hitting her eye and we had a very peaceful evening.

Back to HSC for check number two where Dr. Levin’s assistant informed us her eye was in trouble. The uveitis wasn’t responding to the hourly prednisone drops. He told us that, unless we were able to get some oral steroids into Amanda’s system, he would have to admit her where it could be given intravenously. Unfortunately, the pharmacy at HSC didn’t have pediatric prednisone but our local pharmacy did. He would have a bottle waiting for us when we got home. The dr thought this was a reasonable compromise but told us we’d have to return to HSC the next day, Saturday, to see if the oral meds were working. We should be prepared with a bag for Amanda if they weren’t working – he would be admitting her. He apologetically told us that he would have to bring his children with him to check Amanda’s eye – his wife was working and he had no one to watch the kids. Believe me, him bringing his children with him was absolutely inconsequential when given the option of admitting her to the hospital or being able to go home!

We returned home – all of us exhausted and in dire need of a nap! We all had a quiet lay down and were very grateful to be home! The pharmacist (or my drug dealer as I affectionately refer to him) delivered a bottle of pediatric prednisone as promised. We all had a very good sleep in our own beds – even if we were up early to head back to Toronto for another check up! We arrived at the hospital around 10 and the doctor arrived shortly after us. He gave us the good news that the uveitis flare had calmed down substantially and she didn’t have to be admitted to the hospital. WOO HOO!!! We very happily drove back home!

July 1999

July 1999 – Amanda’s eye battles hit an all-time low in July. We had a follow-up appointment with Dr. Levin, opthamologist at HSC. The news we got at that appointment was devastating. Amanda would have to have cataract surgery. Remember that she was on an extensive course of steroid drops to control the eye inflammation. We had the battle over pressures and it was something we were still struggling with. However, the other side effect is the drop can “feed” a cataract. Amanda had developed a small cataract towards the end of 1998. It was fairly small and hadn’t grown much but, all of a sudden, it had grown substantially in a short period of time. It was now pretty much obscuring the vision in her left eye. The only option we had was to have it taken out.

Dr. Levin kindly and patiently explained the procedure to us as well as any risks involved. We knew we were in the hands of a world-class physician. But we were terrified. We had gone to see Dr. Levin at the start of our summer vacation – from Toronto, we had planned to drive around the lake and go to Niagara Falls – a family favourite (after Disney, of course!). I recall waiting until Amanda was asleep in the back seat to have my little mental meltdown. I bawled most of the way to Niagara. It wasn’t just the thought of the surgery that terrified me, it was the aftermath of it. To remove the cataract, they would take her lens out. Because of the uveitis, they wouldn’t put an implant in. So it means that she would be basically blind in that eye without some kind of correction – she could see colour and light but nothing with any clarity. She would have to be fitted with a contact lens and probably glasses as well. How in the hell do you put a contact lens into the eye of a 4 yr old!!

Unfortunately, there was a wait for the surgery. There was no extreme urgency in getting it done as quickly as possible. However, one factor weighing in was her vision. Amanda was at a critical age for vision development. The cataract was pretty much obscuring her vision in that eye. The longer we had to wait, the more her vision would deteriorate and we may not be able to restore it. Fortunately, we only had to wait until February.

Tuesday, June 5, 2007

November 1998

November 1998 - We now enter what I think of as the scariest part of this disease – Amanda developed uveitis, which is essentially arthritis in the eye. The way it was described to me – the tissue in the eye is similar to the tissue in a joint in the way it becomes inflamed. What is so insidious about this is that it isn’t always noticeable and can often do some major damage before it’s detected. It is recommended that children see an opthamologist every 3 months to ensure nothing is brewing in the eyes.

I recall sitting with Amanda at our kitchen table which is beside a large bay window. We were playing Patty Cake or some hand game when I noticed her eyes didn’t dilate together. It raised some alarm bells for me but we had an appointment scheduled with the local opthamologist anyway, so I figured it could wait for a week or so. When we get to see the doc, it is immediately apparent that the playing field has changed. His manner has always been abrupt and unfriendly but it becomes obvious that he’s taking much more time in looking at her eye. The severity of uveitis is rated on a scale of 1 to 4 – 1 being fairly mild, 4 being serious. Amanda’s left eye flared to a 4 very quickly. She was started on a steroid drop to try to control the inflammation.

When dealing with eye arthritis, it’s a constant juggling act. The steroid drop that’s necessary to control the flare can also cause pressure problems, a.k.a. glaucoma. So what dose do you put a child on – it has to be enough to quell the inflammation but not enough that it cause a rise in the intraocular pressure. The steroid constricts the blood vessels in the eye to decrease the inflammation. However, that also can constrict the fluid draining mechanism in the eye so the fluid that your eye constantly produces builds up causing high pressure. Well, sure as God made little green apples, that’s what happened to Amanda. The steroid drop was a powerful one and it made her pressure rise to the high 20’s (15 to 17 is normal). She was then put on glaucoma drops as well. Even with the addition of the glaucoma drops, the pressure in the eye wasn’t dropping. We then added an oral diuretic to try to drain the fluid from the eye that way.

The roller coaster was out of control and we couldn’t seem to get off. The flare wouldn’t calm down and the pressure wouldn’t come down. Our local opthamologist suggested we see a pediatric opthamologist at HSC. We were put under the care of Dr. Alex Levin, a very gifted physician. He was very patient with our numerous questions and he made Amanda feel at ease. He recommended we start Amanda on a different steroid drop – one that wasn’t as powerful as the other one so it might help the pressure come down. The down side of that was she would have to be on double the dose. We entered eye drop hell! Amanda was having 25 eye drops a day – pretty much one every half hour while she was awake. Amazingly enough, Amanda took this disruption in her day in stride as well. She was in full time day care and her sitter Marg took that time to give Amanda two minutes of undivided attention. The doc recommended that, after Amanda had the eye drop, she had to pinch the bridge of her nose at the tear ducts for one minute. This would help keep the drop in her eye, preventing it leaking it into the tear ducts, and hopefully making it more effective. Marg would give Amanda her drop and snuggle with her for one minute so Amanda got a bit of extra attention – could be why it didn’t bother her so much getting them!!

We fought the battle for a couple of months before it was decided we needed to introduce a new weapon in our arsenal – methotrexate. This is an immune suppressant medication. Dr. Levin suggested that this might be the only way to truly get her flare under control. Dr. Levin needed some guidance on dosage so we went to the rheumatology department. Unfortunately Dr. Feldman wasn’t in so we spoke with a rheumatology fellow. She was very nice but I really wanted to speak to OUR doctor.

Amanda was given a very low dose of methotrexate, in pill form, to see how she tolerated it. We crushed it up and gave it to her in yogurt. Unfortunately we had a battle on our hands to get her to take it. The pills are very bitter and she balked at the weekly dose. We begged, cajoled, scolded, pleaded – anything we could to get her to take it. Every session would end in tears – hers and mine. Part of the reason Amanda would give us grief to take it was the pills upset her stomach. Sometimes she would vomit, others she would just feel ill. We always gave her the meds on a Friday night so she would have Saturday morning to recover.

Fortunately, after several weeks, the methotrexate started to take effect. It’s a powerful drug, only administered once a week, but it takes several weeks for it to build up in the system to get the full affects of it. We were able to decrease the number of drops she was on to 15/day – a little more manageable.

Unfortunately, when one thing gets under control, another flares up! Her joints were again sore and swollen and we made a trip for one more set of joint injections. We’ve tried to make the whole process a little fun for Amanda – we would often spend the night before in a hotel close to HSC so we could go for a swim the night before. And we’d usually squeeze in a visit to the Eaton’s Centre Disney Store!! Disney can be a cure-all for a number of things!

There are some things that are crystal clear in my mind – her initial diagnosis, her first joint injection, her first trip to Disney – while others are blurred around the edges. Whether this is my brain’s coping mechanism or I’ve subconsciously convinced myself that those things don’t matter anymore, I don’t know. But there are periods of this journey that is all just a blur of doctors’ appointments and medications – viewed like a show you’ve taped and are fast forwarding through the commercials. So I’ve hit the fast forward button and we’re moving to the next “clear” segment.

November 1997 - November 1998

November 1997 – I’ve heard, by more than one parent, that they refer to a life with arthritis as a roller coaster ride. You’ve got some soaring highs and some terrifying dips. After Amanda’s first joint injection, we were filled with hope that we had “conquered the beast” and she would enjoy a long period of pain-free existence. Well, the Beast had other ideas! In November, Amanda developed a flare in her other knee and both elbows. Every morning, we struggled to get her out of bed – she was too sore to walk – and to get her dressed – she couldn’t bend her elbows enough to put her shirt on herself. After spending months when she was small teaching her how to dress herself, we were back to square one.

We also noticed a pattern developing. Just prior to the flare being significant enough to notice the joint contractures, she would go through a period of Hissy Fit Hell! She had a hair trigger temper and just ‘bout anything would make her blow! Mount Vesuvius had nothing on this child! Her tantrums were unbelievable – my easy-going, calm, introspective child had, overnight, turned into a primal raging Neanderthal. She would cry uncontrollably, scream unrelentingly, and her coordinated foot kicking/arm waving efforts could have drawn Olympic judges praises had their been an event for Hissy Fits. You always hear that hindsight is 20/20 so it took a couple of eruptions before we started to make the connection. But Amanda was simply in too much pain and too frustrated about it to be able to communicate her frustration effectively. When we finally got the point, we were able to try to refocus her frustration and we verbalized what she was feeling. She didn’t have to pitch a fit to have us get the point and we gave her the words she was looking for to describe how miserable she felt.

Unfortunately, this meant that we were back to HSC for more joint injections! Again, she fought “the mask” – screaming the entire time that she hated “the mask” – the laughing gas they used to put her out. The way she referred to it, it almost sounded like a living, breathing entity that she had to fight until her dying breath. Arthritis had taken away all of her power but this was one thing she could take control over – she’d be damned if she’d go to sleep quietly! And, almost as if she was punishing us, she vomited all over the back seat of the van! Of course, we knew it wasn’t intentional but it sure felt like it was! Again, we broke out the Disney movies, ice cream, and games to keep her occupied for the 48 hour period. Now, I’m not sure if she just knew what to expect and didn’t fight us on the “incarceration”, or if she was simply too pooped from the anaesthetic to fight, but it was much smoother the second time around.

May 1998 – November 1998 – The arthritis continues to rage, unabated, in Amanda’s body. She endures two more sets of joint injections which give her some measure of relief but it seems to rear it’s ugly head again in a few months. We’ve also noticed that there seems to be a bit of a pattern to her flares. Late spring and late fall seem to be a time when she develops the most problems. She continues to be a trooper and takes most things in stride. The worst part of the day, for her, seems to be morning. She has significant stiffness and pain when she gets out of bed. Some mornings she will crawl out of bed because it’s too painful to walk. Our physio from the Arthritis Society suggested that we give her a soak in a warm bath for 15 minutes in the morning and try to get her moving a little better. It helps somewhat – at least gets her limber enough to get moving and get rid of the stiffness.

May - June 1997

May 1997 – In May of 1997, one of the most vivid memories was created in my mind. Since the Canada Revenue department had been generous with an income tax refund, we decided to take Amanda on her first trip to Disney World. This began an extremely LONG love affair with the Mouse House. I thought nothing could top the absolute look of wonder on Amanda’s face as we wheeled her stroller on to Main Street in the Magic Kingdom. However, NOTHING tops the look on her face when she first saw Mickey Mouse! We pointed out where Mickey was stationed and told her we were going to get in line to get his picture and autograph. Well, Amanda had other ideas in mind! She pulled herself out of her stroller and ran, literally pushing people aside, until she was standing in front of him. We have a picture of her with Mickey and you can see the knee on her left leg is horribly swollen and she can’t straighten it. But the brightest star in the sky couldn’t match the absolute glow of pleasure on her face as she stands at Mickey’s side! I remember thinking that this TRULY is the most magical place on the earth – a place where a small child in obvious and incredible pain can still run to see Mickey Mouse!

June 1997 – The day for injections arrived. We had to arrive at HSC very early because her injections would happen around 10 a.m. so we stayed overnight in Toronto to make it easier – morning commute to Toronto is hellish!! Well, try explaining to an extremely hungry 20 month old why she can’t eat and why all these scary people are sticking things on her and pocking and prodding. That day I had to do one of the hardest things I’ve ever had to do in my life – try to hold my screaming daughter while they sedated her for her injections. They do what they call “conscious sedation” – she isn’t completely out but out enough that she isn’t aware of what’s going on. The lights are on but no one’s home, if you know what I mean! I held her tight against my chest and sung one of her favourite songs – Part of Your World from Little Mermaid. They were finally able to get the mask over her struggling face enough that she fell asleep in my arms. I could hardly see my feet as I walked from the procedure room – tears were streaming down my face and blurring my vision. I knew they weren’t going to hurt her and they were doing what needed to be done – but the “Mom” part of your brain has a very hard time reconciling that thought with the vision of a struggling child. However, the “Mom” part of your brain also knows your child is in pain and you will do whatever is necessary to end that pain.

After the injections, they brought her into the ward where we were waiting for her. She looked so small and helpless and fragile when I saw her! I learned one of the most amazing things that day – children have an “ON” button! When the nurse came in to check on her, she firmly pressed her thumb in a spot underneath Amanda’s jaw near her right ear and, lo and behold, Amanda woke up!! Tim and I expressed our admiration for finding the “ON” button but begged her to show us the “OFF” button!! Unfortunately, waking Amanda up also meant turning on the vomit machine! The anaesthetic can make kids dreadfully ill and Amanda was no exception. They gave her some Gravol in her I.V. line but it didn’t help. We were stuck waiting at the hospital for a couple of hours before they gave her the OK to leave – after she was able to take and keep down some fluids.

I thought explaining to an extremely hungry 20 month old why she couldn’t eat was difficulty. Try explaining to that same 20 month old why she isn’t able to walk for 48 hours!! Our rheumatologist has a very strict post-injection policy – no weight bearing for 48 hours. When they do injections, they’re using needles that have a fairly large diameter – as needles go. So if Amanda were to put any weight on her knee before the 48 hours is up, she would run the risk of having the steroids leak through the holes left by the needles. So we stocked up on movies, ice cream, and activities that could make an almost-2 yr old forget that she was stuck on her butt for two days! She kept trying to get up to run – it dawned on me that this was the first time since she’d been diagnosed that she was pain free! Of course, she wanted to try out her “new legs”! Fortunately we got through the weekend without the use of any shackles!

Birth to May 1997

August 19, 1995 – I am born as David Copperfield said! My pregnancy with Amanda was uneventful except for some mild high blood pressure. My labour began at 7:15 that morning. We arrived at the hospital, went through the requisite testing, and were sent to a labour/delivery room. Amanda, however, was reluctant to enter the world – she kept scooting back up every time I tried to push her out! The use of forceps convinced her it was time to join us! She weighed in at 8 lbs 13 oz and arrived with a healthy scream! Tim (DH) and I instantly fell in love with the tiny little ball of fury!

February – May 1997 – The world stopped and we hopped on the roller coaster that is juvenile arthritis. We were very fortunate that they were able to diagnose her arthritis quickly – she had a very classic case of pauci-articular JA. For some kids, diagnosis is agonizing because it’s often a case of determining what it ISN’T before you can determine what it IS. She had a lump on her knee that, x-rays showed, was not an injury or caused by a bump. Her blood work confirmed the diagnosis. Luckily, we were able to start treatment for her fairly quickly. She was started on Naprosyn, an anti-inflammatory, and we started the waiting game. Naprosyn is generally the first weapon in the arthritis battle – most children can tolerate it fairly easily and, for some, it can make a world of difference. Unfortunately for Amanda, it didn’t do the trick.

So we were sent to the Hospital for Sick Children (HSC) in Toronto to meet with a pediatric rheumatologist. Well, there aren’t enough good words to describe what a God-send Dr. Brian Feldman was! We weren’t aware that we were meeting with him to discuss joint injections – so when he brought the topic up, needless to say we were thrown into a panic. What?? You want to stick a needle into my daughter’s knee? Are you INSANE?? After prying my fingers off of the ceiling, he calmly explained the procedure, the side effects, and the after care. While we still had some apprehensions, he was very clear about the fact that we needed to be aggressive to maintain her mobility and range of motion.

The rheumatologist instructed us that we needed to get a pair of custom braces made for Amanda’s legs to wear while she sleeps to make her legs straighten better. It’s made using a piece of plastic about 12 inches long and 8 inches wide. It’s put in an electric frying pan of water and softened, and then pressed against Amanda’s leg to give her a custom fit. Initially, I figured it would be no big deal to get them made. Well, Amanda had other ideas! When the physio from the Arthritis Society put them against her leg, judging from Amanda’s reaction, you would have thought we used a hot poker!! She writhed and screamed even though I was touching the plastic and it wasn’t that hot. I guess this, heaped on the other poking and prodding she had to endure, was just too much. What is pretty comical about this whole situation is Amanda insists on wearing both leg braces, even though, right now, she only needs it for one leg! She goes to bed and waits to be “strapped in” and insists she needs both of them on or she can’t sleep! The rheumatologist thinks this is pretty funny. So we’ve now made it part of our bedtime and morning routine. Every evening, we all tromp into her bedroom to strap her in. And, each morning, she starts singing so we know she’s awake and wants to be “unstrapped”.

Amanda's Timeline

I wanted to give a more detailed account of our journey with arthritis. So I've been writing a timeline for her diagnosis, treatments, etc. I'll post them in chunks so it's not so daunting to read.

Keep an eye out!!


Wednesday, May 30, 2007

The Story of Amanda..........

Three words - that’s all it took. Three words that took my breath away, feeling like I’d been hit in the stomach. “She has arthritis.” Those three words would change our lives forever.

Our 18-month old daughter, Amanda, was diagnosed with pauci-articular juvenile rheumatoid arthritis in February 1997 -a form of arthritis which affects fewer than 5 large joints (hips, knees, ankles, shoulders, elbows, wrists, jaw). In the grand scheme of things, it could be worse. She didn’t have cancer, muscular dystrophy, or any other potentially life-threatening disease. She had no visible signs that there was anything wrong with her other than a lump on her knee. When you envision your child’s life and future, any progressive disease is devastating. But when I think of everything this disease has brought for her, I can truly say she’s been blessed.

Amanda has been blessed with strength - both in body and spirit. When her joints are swollen, warm, and stiff, she’s still able to climb up on my bed in the morning and give me what we call “Amanderific” hugs - hugs that threaten to choke the breath out of your lungs. When I am feeling overwhelmed and discouraged about her condition, she is always able to comfort me with a snuggle and a ready smile.

Amanda has been blessed with patience. One of the side effects of her type of arthritis is “eye arthritis” or uveitis. At her worst, she was getting up to 25 eye drops a day. Hourly, she would remind us when her watch chimed the hour that it was time for a drop. She would tilt her head back, receive the drop, pinch her nose to keep the drop in her eye, and still be able to color in her coloring book or play with her dolls.

Amanda has been blessed with a sense of humor. When she was hospitalized for a week with chicken pox (a potentially dangerous situation since Amanda is on methotrexate, an immune suppressant medication), she smiled and said “You gotta do what you gotta do!”

Amanda has been blessed with compassion. I’ve been fortunate enough to find a bulletin board on the web that has posts from dozens of moms of children with juvenile arthritis from all over the world. When I tell Amanda about some of the challenges these children are facing, she is sure to include them in her nightly prayers, asking God to make them better and help them not to be afraid of whatever needles or medicines they are forced to take.

But most of all, Amanda has been blessed with life. She truly takes each day and makes the most of it. Her energy and light shine as an example to everyone she meets who feel that they may have had some rotten breaks in life. Her laugh gives me hope that all I have envisioned for her for her life ahead is still a possibility. Her voice as she sings tells me that things aren’t as bad as they could be. Her intelligence reminds me that, while this disease may have ravaged her body, it has not affected her ability to learn and absorb.

Yes, I can truly say Amanda has been blessed. But I wish it wasn’t because of arthritis.

When talking about blessing that have come to us, we can definitely count the Arthritis Society among those blessings. We were fortunate enough to be placed under the kind, compassionate care of a physiotherapist with the Arthritis Society. She answered numerous questions with more patience than a saint - and trust me, if you knew our family, you’d know exactly how direct and unrelenting we can be! She acted as an advocate for Amanda. She was able to get our local pediatrician to understand how uncomfortable Amanda had become while she was in a flare. When we were told Amanda would be sent to Sick Kids for joint injections, Sue provided a great deal of information on the procedure - how it was performed, what we could expect afterwards.

We’ve also received valuable and comprehensive information from the Arthritis Society. When Amanda was first diagnosed, we made the mistake of surfing the web, attempting to find out more information about Amanda’s future. All that did was cause us incredible anxiety! There’s a great deal of information available via the web; however, when a parent is first beginning this journey, the information is overwhelming and, quite frankly, scary! We often found ourselves reading symptoms and conditions not related to the type of arthritis Amanda has. The Arthritis Society was able to filter that information for us - into manageable, understandable, and relevant material.

She often asks us why God gave her arthritis. We tell her it can be for a number of reasons - perhaps she had to face the challenges she’s faced in order to become the person she’s meant to be; perhaps she is destined to be a pediatric rheumatologist so she can help kids who face the same disease she has. But I think the biggest reason Amanda was given this disease was to help spread the word that kids can get arthritis too.

And now a few words from Amanda.....

Hello. My name is Amanda and I have arthritis. Most people don’t believe me when I tell them that. They think that only people like my grandparents can get arthritis. But I know that’s not true. And so do the people at the Arthritis Society. They helped us understand what it means when a kid gets arthritis. They helped us understand that, although things seem pretty crummy, there is always someone who has it worse. They helped us understand that there are a lot of kids like me and that I’m not alone. But most of all, they helped us understand that there is hope - hope that I can be like a normal kid, hope that I can beat this disease, and hope that I can grow up to be the adult that I’m supposed to be.

Here's my first post!...

Hey folks:

I'm a blogging neophyte so bear with me! I will be posting some history on Amanda's journey while she's faced JA. This will also be a place where I can keep friends and family updated on her multiple doctors appointments!

Keep tuned in for updates!