Loving 2011 Already!

So far I would have to say the year is off to a good start!  Everyone is happy and healthy and I have been enjoying spending time with Alex since she has an extra week of Christmas break. 

Her doctor appointment went fine and pretty uneventful.  The great news was that her lab results all came back fine. The doctor was looking for any signs that the medicine (methotrexate) was causing damage to her organs and so far it is not.  On visual inspection though she felt that Alex was still showing a significant amount of swelling and is just stunned that she has no pain or stiffness.   She said that Alex must be blocking the pain because it would be impossible to have that much swelling and no discomfort.  I believe she must have inherited a high pain tolerance from my mom whom after open heart surgery did not complain once of being in any pain!   

She will be having another MRI in February or March to compare to the original one to see if there is any reduction in inflammation.  They will also scan her left hand and feet to get a base reading on those areas.  

Other than that life around here is getting back to normal.  The Christmas tree is still up and frankly I don't want to take it down!  I love the holidays and don't want them to end.  Maybe this weekend...sigh.....

Happy New Year once again! 

Goodbye 2010 Hello To New Beginnings!!

Happy New Year!  I know my last post was about how crummy last year was so I wanted to write about what I  am most looking forward to in 2011.  I am not one to make New Years Resolutions because honestly I never keep them. So this year I have come up with intentions.  I feel with a little faith and determination I will succeed. So here is my list of intentions for 2011.

1.  Be Thankful! We truly have so much to be thankful for.  We live in a beautiful city and state.  We both have great jobs that we love!  We are still happily married.  We love our kids!  We are blessed by a wonderful church that continues to strengthen our faith and teach our kids what it's all about!  My parents live close by and love us so much...and we love them too!!  Our kids go to great schools and have wonderful friends.  I have this blog to connect with other families out there!  I could go on forever!

2. Save Money! A few of our struggles this year were due to finances.  I vow to spend less this year than last.  To always use coupons!  To think twice about mindless purchases.  To work more and learn new things.  To sell what we no longer use or donate to those who really need it.  To make more meals at home.  And most importantly set a monthly budget and save save save!

3. Play More! This kinda goes along with #2.  Playing is free, its fun, its exercise, its relationship building, its skill learning and oh yeah fun!!!  One of my fondest memories growing up was sitting around my Aunt Anne's dining room table playing games.  We would stay up so late, just laughing, talking, bonding all while playing!  I hope to do more of that with my kids and friends and family.

 4. Strengthen My Faith I would love to join our small group bible study program at our church.  I also want to implement a family bible study.  We have done it here and there but when things get busy we let it slide.  If anyone has a program they follow I would love to know.

Well, I think that will do it.  What are your resolutions this year? Try setting intentions instead.  That way it is something you can truly work on all year!  If you have any good ones leave them in the comment section!

Happy New Year!!!  2011!!!

End Of The Year Update

Hello and Merry Christmas everyone! 

I have never looked so forward to a New Year as I am to this one.  I usually don't like to roll one year up into one bad one but seriously...if you know our family you would agree.  Just as a recap here are some things we had to face this year.... shoulder surgery, torn Achilles tendon, two bouts of oral surgery (me and Alex), roughly 9 cases of strep throat between all of us, Alex having tonsils removed, Alex being diagnosed with arthritis, my dad falling down the stairs and having surgery to repair his quad muscle, various car issues and on and on it goes. As of January 1st I will be looking at a clean slate and look forward to a much more fun and stress free year!

Since this is a blog about Alex and her arthritis I will update you on her.   She has such a great attitude about her illness.  She has been doing great remembering (better than me) to take her meds everyday!  After missing so much school for having her tonsils out and going to so many doctor appointments (12 days so far this year) her grades slipped quite a bit.  But I am happy to report that as of today she has mostly A's and B's again...one C in Spanish. She has worked so hard and has stayed after school for tutoring two days every week.  She pointed out to me yesterday that her fingers have seemed to swell up considerably again which is a big disappointment!  She has her next check up on Jan. 3rd so we will be discussing this with the doctor.  It did seem to be working there for a while so not sure if this is normal.  We are just hoping they don't move us up to the next med which will be an injection....given by me...yikes!

Other than that we are anxiously awaiting Christmas!  The kids are so excited and loving everything this season brings.  As for Ben and I we are trying to remain stress free and are so thankful for all that we have.  We have a roof over our head, food on our table and for the most part good health.  That is a lot more than some people have and we have to remind ourselves of that!

We wish all of you a very Merry Christmas and a Happy and Prosperous New Year!!   Thank you to all of our family and friends who have prayed for and supported us this year.  We love you all for it and it has not gone unnoticed!

Love,

Pattie

Pills, Pills, Pills!!

Today was Alex's appointment with her rheumatologist.  Now that her tonisls are out we can start treating her for her arthritis.  This makes it all so real now. 

Those of you who are familiar with arthritis are quite aware of the number one medication prescribed....methotrexate. Here is a short definition of the medication.

 MTX was used initially to treat cancer. By chance, it was discovered to be effective in clearing psoriasis.
In psoriatic arthritis patients, it may take up to six months for the drug to have maximum effect. Effects can include decreased inflammation and pain reduction. Methotrexate can cause serious or life-threatening side effects on your liver, lungs, kidneys, and bone marrow (immune system).

I have not picked up her rx yet but the doctor said she will be taking 6 (small) pills every friday night.  This is because MTX often causes nausea so she wants to have her start it over the weekend so she wont miss any more school.   She also has to take a prescribed dose of folic acid everyday.  This is to help with any side effects she may have. 

Now that she will be starting her meds she has to have blood work taken every 4 weeks.  If you have been reading this blog you know that Alex and taking blood don't mix. She has never actually fainted but has come pretty darn close.  Unfortunately she will have to get used to it.  It is very important to watch her liver while on this medication.

We will wait about 6 months to see if there are any results. This would mean visible results of her joints swelling to go down.  If yes then great!!  If not we will have to also add an enbrel shot to our routine......yes.....me giving her a shot!  Yikes. 

She also got her flu shot today.  This medication will mess with her immune system so we have to try to prevent her from getting sick!  Now I just need to get one for everyone else! 

Thanks for reading!  I will let you know how she does with her new meds.

Super Quick Update

Alex is on day 8 of recovery today.  It was also her first day back to school.  I let her sleep in a bit since she has been getting up at about 9 am most days.  I also went in and talked to the school nurse about her restrictions and that if she got too tired or in pain to just call me. She has texted me to tell me she is tired but no pain was mentioned. She really did not want to go this morning but I expected that.  I wouldn't want to go back either.  She has been in heaven (and yes pain) laying in bed watching tv, eating yummy things and getting lots of extra love and attention. Its hard to give that up for school and homework!!

So, now that this is behind us we will be facing her next challenge that unfortunately will never go away.  Her Psoriatic Arthritis.  There is a lot of the unknown ahead of us but we will get through it just like we did this. 

I am still looking to connect with other families with children living with PA.  I have several great friends that have kids with JRA and have received some great information from them.  It would be nice to kinda know what to expect for her future.  So, if anyone is reading this that has a child with PA or was diagnosed as a teen with PA please contact me.

Recovery Going Well...day 4!!

Alex had her tonsils out on Wednesday (today is Sat) and is doing quite well.  I think I had freaked myself out by reading all these horror stories online about recovery being horrible.  Now, it did say that days 5-7 can be bad again which will start tomorrow so we shall see. 

Overall she is doing great.  She has been in bed for the most part and been watching tv non-stop!  She has been eating soft foods since day one.  Mac and cheese is her favorite, mashed taters, chrushed ice (from Sonic...they sell it there by the bag) and soup.  She is also drinking tons of water, apple juice and Gatorade.  Oh and lets not forget Popsicles.  She has probably had about 15 since Wednesday!! 

Today she is mostly complaining about her ears hurting her which is a normal but weird side effect.  I guess because the tonsils are so close to her nerves for her ears.  She has also complained that it hurts when she talks so she is mostly whispering. 

She is still needing Tylenol with codeine at night and for some breakthrough pain.  It is almost gone so I will probably call the doctor for more just to be safe.  Especially since the doctor said that the pain will get bad again when the scabs start to come off. 

Enough of that lovely talk.  Thanks everyone for all of your prayers through this.  I am just so glad to have it behind us so that we can start to focus on her arthritis. 

Tomorrow is the BIG day!!

Well, we managed to keep Alex healthy in time for her surgery tomorrow.  I don't know how.  Both Ben and I were down the past week with bronchitis!!  We sent her to my parents house for the weekend to keep her away from the germs and it has seemed to have worked!

We are all anxious to get this behind us.  I have to say I think I am ten times more nervous about it all than her.  Like I have said before....it's not so much the surgery that scares me but the recovery I am worried about.  I have heard that it is a very painful and long (7-10 days) recovery.  But.....Alex does seem to have a high pain tolerance plus she is 12.  Kids seems to bounce back much faster.

I hope to update here daily to let all of you know how she is doing and for any other parents out there that are going through the same thing.  Feel free to leave her messages here because she does check this blog.  Thanks also to all of you for your prayers and well wishes!