Meandering into November

     Okay, how did we end up in November all of a sudden?

     Life seems to just happen and free time is a scarce good! So much has happened since my last post! Mostly good though! It’s so nice to be able to live life for a couple of months without really having to worry about my daughter’s health. That’s a great feeling and I could get used to it easily!

     Since my last post, my son has grown just about 3 inches. My little man is growing up too and there is no denying it. He is loving sports and is developing some great leadership skills on the volleyball court, soon to change in to basketball! He decided this year he wants to play all the sports the school is offering. I’m so proud of him and so happy that sports come so natural to him, it is a great way for him to express himself.

     My husband is busier than ever and for me a new school year has started too. I’m working in an elementary school, helping special needs students reach their fullest potential, help them be successful, independent and hopefully see them grow in to valuable, contributing members of our society. I love this job, it’s not everybody’s cup of tea, but it is mine! This year has been a true challenge so far, but that’s exactly what I like, so it’s all good!

     My girl….wow, where do I start? I don’t want to jinx it but she has been doing FANTASTIC! I’m so over the moon that this drug she is on now ( humira) is giving her the opportunity to truly blossom.  She is such a wonderful young lady with great spunk and a zest for life, it bubbles out of her and is quite contagious! We went for a checkup with her rheumatologist in October and all her joints are clean,for the first time in a very long time! we have successfully weaned her off of prednisone and if she stays this “good” we might be able to wean more drugs when she has her next check, which is planned for February. Yes; she is a terrible teen at times, but secretly I love it! ( have to admit I do recognize myself in her, but shhh, don’t tell her!) 

see the mischief in her eyes?

Her transition to the big high school in town went smoothly and has opened lots of doors for her. New opportunities, new friends, and yes: even a boy friend (a really nice guy, so it seems!). So happy for her she has the energy to enjoy this new stage of her life full throttle, nothing is really going to be able to stop her now!

    The one scary thing that is lurking somewhere over our heads is the fact that her doc is talking about transitioning to an adult rheumatologist when she is about 17…. She’s almost 16 now  so it is creeping up. b I don’t want to let go of this wonderful lady who has meant so much to us and has been there for  all the hurdles my girl has had to tackle. Makes me sad this woman can not be part of the rest of our lives.

For now, we appreciate the care we are receiving and what tomorrow brings is always a surprise!

For now we enjoy our new normal, what the future holds; only time will tell!

Summer

     Wow, it’s been a while! June has flown by and July is sure to be gone in no time as well.

     June has been a busy month. When working in the school system and having two school going kids, June is always one of the busiest months of the year.

     My girl had recovered from her salmonella ordeal and had a few milestones coming up.

Grade 9 farewell was one of them; her last couple of days attending our great little country school. A lovely little ceremony was organized and all 11 of them looked stunning in their beautiful outfits. Am I biased when I say my daughter was the cutest?

my little beauty!

Exams were written, a final overnight fieldtrip to a somewhat local cowboy village was made and that was the end of 9 years of Crestomere School.

     She’s pumped to move forward and go to high school. I’m not overly excited yet, but it’s not all about me,right?!!

     June came and went and July arrived.

A long anticipated visit from Oma and a nephew from Holland was in the planning. The weather gods must have known those 2 were coming because as soon as they set foot on Canadian soil, temperatures rose to an average of 30 degrees Celsius. A great time was had by all and family bonds were strengthened.  We love living here and would never go back to Holland, but at times you do miss your family.  My kids and my nephew hadn’t seen each other face to face in 7 years. It didn’t take long for them to pick up from where they had left off. Plans were made for more visits in the future and I wouldn’t be surprised if that actually happens sooner rather than later.

visiting the hoodoos in Drum Heller.

     Ten days flew by, had tons of fun, showed them lots of the province, and yesterday we drove them to the airport again. They made it home safe. Strangely quiet in the house now, but looking back on those ten days, some beautiful memories were made. 

     Health wise it’s going pretty good with my girl. The one thing I am not too happy about is her energy level. She still needs to rest more than the average teenager. Has to paste herself or pay for it later. Hospital visit coming up in August or September , depending on the availability. Ophthalmologist planned for the end of August. I’m hopeful more drugs can be weaned but am hesitant to state it out loud, do not want to jinx the progress she has made since on Humira. Still a nasty shot to administer but boy is it ever nice to see her this healthy. 

     On another note: July is juvenile arthritis awareness month in the states. Since there is still so little awareness for JIA I thought I’d post this link. This is to show having arthritis is NOT just growing pains and in some cases truly can be life threatening. The family of this boy knows that all to well and they keep fighting to find something that works for them.

 http://purpleplayapower.blogspot.ca/2012/07/what-do-you-think-of-when-you-hear-word.html 

I wish them well and hope something positive will happen for them soon. Parker is a fighter.

May? Maybe Not.....

     Well….we had a few good weeks! May has not started out as good as April, but we are hoping it will end on a good note!

      My girl has been tired for about a week and kept assuring me she was just tired. My gut told me there was a bit more to it, but one can only push a teenager so much. She’s not always super honest when it comes to telling me how she feels. She knows I’ll just drag her to the doctor and she is afraid she has to up her meds again.

      By Thursday she was pretty sick and Friday she asked to stay home. I told her that it was fine; I was going to take her to see a doc though. She had given up making excuses so I knew she was really not feeling good. She was due for another Humira shot the next day, but with these biological drugs it is important to not administer them when she runs a fever. They could make symptoms much worse. Family doc was not available so off to the emergency we went.

      At emergency we were helped by a very thorough physician this time. Both my daughter and I felt she took our worries serious , at least we didn’t have to fight “that battle” again.

trying to stay hydrated, both orally and intravenously!

      Blood work done, urine samples, chest x-rays, blood cultures taken. She was aching all over and had a bad case of the runs. The muscle aches suggested she might have the flu so a flu swap was done( up her nose) but the diarrhea contradicted that. She was dehydrated so they gave her an IV. Doc asked to come back the next day and again the day after. Luckily she got to keep her IV needle in so they didn’t have to poke her again the next day. No Humira for her until at least 3 days fever free.

     Next day the fever was down, at least during the day, it came back at night time. Diarrhea…..still “running wild”.  Another IV was given and a bag full of containers was send home with us to collect stool samples.

On Sunday, (Mother’s Day, I guess this is what being a mom is about; caring for your youngens!)   she got another IV and was feeling somewhat better. Monday she was supposed to write a PAT, but I thought she should stay home and sick it out. She didn’t agree and wanted to write her exam. We agreed that her dad would pick her up and bring her home from school when she was done writing her test.

      We went and saw the family doc after I came home from work, to find out if there was any news about all the tests that were done. Some elevated markers in her blood, a bit of blood in her urine, but noting crazy. Stool samples were not back yet. For now they believe it was a virus.

      Next day a field trip to Edmonton….went fairly well, except for a couple of crazy nose bleeds. With the weather being nice and warm, the air is dry and nose bleeds occur frequently. I have a weird child, let me tell you.

     Today, she’s still extremely tired and now she starts sniffling with a runny nose. If not better by tomorrow; Doc, here we come again. 

     The life of an immune suppressed body is never an easy one. Like I stated in the beginning of this post; here’s to hoping this month ends on a better note than it started. My girl’s grade 9 farewell is at the end of the month, I believe she deserves to enjoy that day. She lost so much weight, I hope we can still strap her in her dress somehow. Double sided tape maybe....?  

April's Ending

      The end of April is nearing, another month into 2012.

     Our visit to the Calgary Children’s Hospital was a successful one. Clean joints, no signs of inflammation what so ever. Still have a hard time believing it; it has been a while since we’ve had such great news!  Beginning to hope Humira is my girl’s miracle drug. We continue weaning the prednisone; my hope is to be done with that when the new school year starts. First year at the high school. Preparations for grade 9 farewell are well on their way.

     We had a great visit, not just because we got good news, also because we had the chance to discuss some questions we had, now that my daughter is starting to get in to her teenage years (with that comes teenage behavior…undeniable, so we better be prepared for whatever those years have in store for her!)

     I know it’s still a couple of years away, but I dread the day my girl has to transition into adult care. The seven and something years we have had the pleasure of dealing with her Rheumatologist have been truly a blessing. We could not have asked for a more caring doctor. In this time you build relationship. I know it’s a professional relationship, but if you are sharing the care of a child, it becomes an emotional bond as well. This lady has been there when my daughter was at her lowest and has been there to celebrate her successes as well. This lady has seen her grow up, from the skinny little 7 year old to the beautiful 15 year old. This lady has played an important part in my daughter’s life and helped grow from this miserable sick little girl into a wonderful strong young lady. I’m a little worried about our wonderful doc. Not sure why, but something is up. We’ll see, our next appointment is in July.

     Also have to give credit to my son. He has been so understanding and has never ever complained about all the attention my daughter gets. I feel bad sometimes, it’s hard to justify all the time and focus that goes to her. I told him how proud I am of him and how much I appreciate his attitude towards his sister’s illness. Love my boy, he’s a good guy!

     I’m also happy to share with you that my girl has won a $250 gift card with her JA video clip. She is over the moon and already has spent the money about 15 times in her mind. Can’t wait to go shopping with her! A mini fridge for in her room is what she wants to spend it on. With a bit of luck she can even throw in a microwave!

     Wonder what May will bring us. Hoping for healthy joints!

I Want People To Know...

    Wow, April sure has hit us with an unexpected surprise! Woke up to a foot of snow this morning! Luckily it won't last long but it took a lot of motivation to get going today!

     Juvenile Arthritis Awareness month may have come to an end, my daughter is still working on raising awareness! Nice to see she is starting to stand up for herself and others dealing with JA!
She made a little video as an entry for a contest held by the Arthritis Society.
I believe it has turned out pretty good!
Here's the link so you can judge for yourself!
http://www.youtube.com/watch?v=Cn8Xog9R8qY&context=C454a0bcADvjVQa1PpcFPyaMj5FAiCBqr5Ez5atdZPXtHC32ExhJk%3D

    The results will be in somewhere next week, would be nice if her efforts are recognized!

    Easter Monday it is time for a visit to the Children's Hospital again, first check in 3 months. Hopeful to hear good  things. We will keep you posted, Happy Easter!

Joint Forces part two!

     Well, our run was a success! My girl held a great presentation and we walked the school grounds in the snow. I had anticipated some long faces from the junior high students but I have seen none of that! Walking in the snow was kind of a nice metaphor; yes, plowing through the snow may take some effort, but then again, living with arthritis always takes effort. It was great to see our little friend, who suffers from JA as well, came out with her family. The driving conditions were not great at all so it was truly appreciated! 

      The students were all great sports and I believe my girl is excited to get her point across and gained a better understanding from her peers.

     The health reporter, Su-Ling Goh, from the local television station, Global Edmonton, came and interviewed us. She wrote a great little piece and it was aired that same day on the six o’clock news. I truly believe we have done a pretty decent job in generating some awareness and we raised a fair amount of dollars too. Here’s to hoping the first step towards reaching our goal has been set and wheels are set in motion.

Here is a link to the footage that was shown on the news. http://www.globaltvedmonton.com/video/juvenile+arthritis/video.html?v=2213977900&p=1&s=dd#video   

     On a medical note, my girl is doing pretty good at the moment. Her eyes were clear, that is always a huge relief. Next check by her doc is booked for the beginning of April. We need to get some blood work done before that. I have good hopes that Dr. J is going to be very pleased with how things are progressing. I am even thinking we could get the green light were it comes to discontinuing Prednisone….not saying that out loud though, I might be jinxing it!

Juvenile Arthritis Awareness month, let's Join Forces!

     March is here.

Eyes were checked and found all clear so that’s great to start the month off with.

  

     March is Juvenile Arthritis awareness month. So…time to raise some awareness! My daughter and I are organizing a run/walk at her school. I’m excited a little country school is willing to step up and help host this event. We have a great little community and I’m proud to be living here.

     My daughter is working on a power point presentation to show during an assembly, shirts are being printed, pledge sheets are printed, prizes are on their way, on line fundraising page is up (will post the link ) and all the pieces are starting to fall into place.

     Also have some media attention, a representative from Global Edmonton is planning on coming out and do a little piece my daughter, Juvenile Arthritis, and our run. Exciting and hoping it will happen because every opportunity I have to make a few more people aware of what JA is all about, I will take!

     I’ll keep you posted and if you are able, please come join us March 22. If you can’t join us, maybe take this opportunity to show your support and sponsor our run!

http://arthritis.akaraisin.com/Donation/Event/Home.aspx?seid=5284&mid=8&Lang=en-CA

Check out the link!

Leaping in to March

      I’m sharing my house with a 15 year old….I’ll leave it in the middle whether  it’s a blessing or not! It sure is entertaining though! My girl was born on Valentine’s Day so it always is a bit of an extra special day for her.

     This is just about a whole month without too much arthritis hustle. Sometimes there is the occasional “extreme fatigue” period, battery is empty and need a weekend to be recharged. That’s about it though. I’m keeping my fingers crossed…

     Even the nasty Humira shots are beginning to get somewhat easier; last one went in without shedding even one tear.

     March first it is time for her bi-annual eye exam at the ophthalmologist, full dilation and check. Hope everything will be clear. There should also be a Hospital visit for a check. Hopeful we can finally stop prednisone, but not convinced until the doc actually speaks those words.  Pretty weird to be able to go for just a check up, no treatment or nothing!

     March is Juvenile Arthritis Awareness month. I’m working on getting “my” run organized….slowly but surely things are starting to come together. Have been communicating with The Arthritis Society and they have been helpful, just a few things I want to work out yet! Will have an online pledge opportunity for those of you that are interested in sponsoring us! Will post it as soon as it is set up.

     Going to be a busy month, but it will be good! We are experiencing a bit of winter at the moment, I can’t and won’t complain about that, given the extreme soft winter we have had so far! Now here’s to hoping the snow will be gone by March 22^nd when we are having our run!

  

 The extra day 2012 offers us, our rare leap day, February 29^th, is also Rare Disease Day. Many auto immune diseases are on the list of rare diseases. Thought I’d point that out to you!

     Have a wonderful March, Spring may be just around the corner!

Joint Forces

    Okay…now the focus can shift a little bit, with the holiday season out of the way and no more frequent trips to Calgary. I’ve been thinking for a long time about organizing an event where I could raise some funds and some awareness at the same time, for Juvenile Arthritis. The thinking stage has passed and now I am actually organizing a JA walk/run hosted at the school that my kids attend.

    It has frustrated me immensely that there is nothing out there for kids with JA. No options for them to meet peers, exchange experiences, forget about their never ending struggles for a bit and just have some fun for a change. So many juvenile diseases have advocates and opportunities, not JA though. The public awareness about juvenile diabetes, epilepsy, Crohn’s disease, asthma etc. is much greater than for JA. I’m not sure what the reason is, maybe it’s just not sexy enough, maybe it’s because there is no famous face to it, honestly, I couldn’t tell you. It is because of the lack of awareness people often don’t understand the seriousness of this condition. I will keep trying to change that.

   Even after contacting The Arthritis Foundation I found out they really didn’t have anything for our youth in their program. Sure, they have information, brochures, educational programs, but most of them are focused on adults. I was quite shocked to find out there is nothing out there that helps kids who are dealing with this crippling disease every single day of their lives, nothing that lifts their spirits, nothing that recognizes or encourages them in the battle they are battling.

    Research is important, but seeing my child with a smile on her face is important too. So, Mohammed decided to go to the mountain. I’m currently investigating if The Arthritis Society is willing/able to offer camps, day trips, events etcetera for our youth, if funds can be raised for that.  I want to work hard to raise money, but I also want monies that are raised directly benefits our kids. Hopefully The Arthritis Society is willing to designate funds raised specifically to towards that goal . If that’s not achievable, I am investigating the options of setting up a charity event at the Alberta Children’s Hospital Foundation….we shall see!

   In the mean time, we ARE organizing that walk! We set a tentative date for March 22. My girl decided to do a presentation and we are planning to do an assembly. I’m exploring some options to get some T-shirts printed and looking in to incentives for the students to raise some pennies! We’ll probably be setting up an on-line fundraise page, as well as the old fashioned pennies and quarters. I’ll keep you posted; hope to find out more soon! 

    In the mean time; this is the logo I designed for T-shirts, pretty cute huh!