Team Huddle

Today it dawned on me how much the statement "there's no I in team" relates to Alex's journey with arthritis.   Yes, she is the one with the disease but there are so many there behind her to help us get through it.  Let me introduce them to you.....

Family: Yes, of course her dad and I are part of her team and even her brother and sister (sometimes, ha).  But let's not forget my parents Sue and Tom.  Did you know that it was my dad who drove us down to Children s Hospital and stood beside me as I learned to give Alex her first shot.  My mom is always telling me about new things she has learned  regarding arthritis and probably Alex's #1 cheerleader! She even offered to call me every Wednesday and Saturday night just to remind me to give Alex her shot! Amazing!

 My extended family including my brother Mike and his wife Stephanie, my cousins Tricia, Sue, Lynne, Karen and Eddie and aunts Anne, Peggy and uncle Ed...they have all been so awesome in praying for Alex and keeping updated on her treatment.  We love and appreciate them all so much!

Dr. Llona Szer

Doctors & Medical Support: If it wasn't for our Pediatrician, Dr Lauren Choi, suggesting we get a second opinion from a rheumy even after ALL of Alex's tests came back negative we would have never known Alex had arthritis.  Or, we would have found out after much more damage was done to her joints!!  Our next angel was Dr, Llona Szer (pronounced sher or Cher), Alex's rheumy.  Now, we didn't see eye to eye at the beginning and I even left her office in tears once after she yelled at me for not taking things serious enough but boy do I love her now!  Not only is she the Director of Pediatric Rheumatology for Children s Hospital, San Diego but also the recipient of many awards and accolades! Alex adores her and I'm pretty sure the feeling is mutual since she is the one who nominated Alex for the Arthritis Foundation Honoree.  I'm already dreading the day when Alex has to find an adult rheumy....but I have a feeling we will be in touch with Dr. Szer forever!
Alex's team also includes an Opthomologist, dermatologist, physical therapist, and all the MRI tech's, the ones that draw her blood, the nurses and the appointment makers!

Friends & Co-Workers: As the mom of a child with an autoimmune disease I walk a fine line.  One side is living life as if nothing was wrong, all is great in the world.  The other is living in the throws of "why me?", "why my daughter", doctors appointments, needles, pills and frustration.  I try to live right in the middle.  Sometimes I fall over into the dark side and that is where you, my dear friends come in!  The friend that sticks out the most in my mind is Michelle Naegelvoort.  Michelle and I met when her daughter Alexandra (yes you read that right) and my Alex went to school together in K-1 grades.  My Alex left that school to attend one closer.  A few years later facebook arrived along with lots of friends I hadn't seen or heard from in years.  Michelle was one of them!  In fact, except for once in 2005 (i think) we have not seen each other in over 8 years (and she only lives 25 minutes away!).  So it turns out her son Dutch also suffers from an autoimmune disorder, so we have a lot in common.  Our kids go to some of the same doctors and have been on some of the same meds.   It has been amazing to have someone to talk to that has gone through exactly what we are going through and give great advice or just listen!   Anyway, our late night chats on fb mean the world to me and someday we will actually get away for our girls trip to Disneyland like we keep talking about!!

I have other friends too that are always there to support and listen! Girl Scout moms, school friends, church friends...the list could go on and on!

Support Groups: Yes, I belong to a support group....sorta.  There is a group of amazing moms online (facebook) that I have contact with on a daily basis.  The group is specifically for moms of kids with juvenile arthritis.  We are always helping each other with advice, comforting when something is going wrong or jumping for joy when a child finally goes into remission!  We are from all over the world...some from as far as Australia!  I think we would all agree that having this group has been one of the best things that has happened in this journey!  Someday we will have to plan a meet up!!

So, as you see I could go on and on.  My point in all of this is that Alex could not be going through this alone!  Each one of you hold a special position in the team.  You may be the play maker ,the star player, the ref or the one on the bench who gets pulled into the game when the going gets tough!  I can't thank you all enough!  And thank you for being part of Alex's Team!  Now it's time to go beat this!!!

September

Awww Septermber!  I love this month.....summer is coming to an end and fall is on the horizon.  All the kids start a new year at school with a fresh slate!  The crazy thing is that San Diego just started getting warm!  We had a very cool "summer" but ever since school has started it has been in the 80's!

Other than that we had a pretty quiet August.  Kiersten turned 11 and is having a sleepover this weekend to celebrate with her friends.

I have a weird thing going on....my fingers on my right hand are numb....like all the time.  I went to the doc and she is pretty sure I have a pinched nerve in my neck.  I have to get an MRI and see what's going on with it.

We have a meeting next week at the Arthritis Foundation to go over the upcoming events.  The official Jingle Bell Walk kick off party will be on 9/25 at Road Runner Sports!  This will be her first public event so fingers crossed!! Bottom line it will be lots of fun!!!!

Well, that's it for today.  Don't forget to go here to sign up for the Jingle Bell Walk!!  If you are not local you can always make a donation.....any size counts! You can also search to see if there is a walk in your area and start your own team!!  No child should have to deal with arthritis!

Beauty Rest or Extreme Fatigue?

Hello friends.  Hope you are all having a great summer!  It has been a very mild summer here in San Diego.  The seasons really are changing!  We have not used our A/C once this summer which is really crazy!  Hey, I'm not complaining....I love a breezy 74 degree day like this!!

The girls start school in a week.  I'm not looking forward to it at all.   Carpooling, homework, early bedtimes and oh yeah homework aren't for me!  But, it is what it is.  Alex will be a high schooler!  9th grade!  I remember 9th grade like it was yesterday.  My first boyfriend, lockers, Friday night football games, dances, etc.  I am so excited for this time in her life!

Kiersten will be attending the same school but entering Middle School. It's a K-12 Charter school.   My youngest Ryan will still attend the elementary school down the street.  He will be a 4th grader.  He has the same teacher that Alex and Kiersten both had so that will be nice.  We really like her and she knows our family well.

Alex seems to be doing well......that is when she is not asleep.  I have never seen someone sleep as much as her.  I think what has happened is that her sleep times have been  turned around.  She is staying up so so late because she can't fall asleep but then she sleeps all day.   Last night I told her to go to bed at 11 pm and as of right now, 11:44 am she is still out.  I have gone to rouse her a couple times and she can hardly keep her eyes open to talk to me.

I have chatted with a few other RA moms and they all say their kids are the same. It could have to do with the fact that her body is constantly attacking itself, or the meds, hormones or that she simply needs the sleep.  I told her we need to start keeping a log so that we can see if there is any pattern to it. When she is awake she is fine.  She is full of energy and  happy.  I guess the reason it concerns me is because it seems to be getting worse.  I don't know how she will be able to sit through a day at school let alone come home and do homework.

Her appointment is in a couple weeks but I am hoping to get it moved up.  I will be sure to let you know.  So, bye for now.  Have an amazing week and I hope that wherever you are, you are able to get out and enjoy some great weather!!  Happy Summer!!

Hello friends...thanks for stopping by!  It's March now.....we are in the thick of busy birthday time!!  Alex turned 14 on February 25th!  It was a very fun day!  She was in a play through her Advanced Drams group at school.  Afterwards we had cake with her cast and crew!  It was great to see how loved she is!  She did a great job and made us very proud!  This Saturday is my husband Ben's birthday and the following day he and Alex are going to Disneyland to celebrate their birthdays and have a very special daddy/daughter day.  Next week on the 16th I turn 41...and on the 19th my son will be 9! Fun Fun times ahead!  

 Alex is in her 3rd month on Enbrel.  She will be getting her labs done (blood work) this week and has her appointment with her rheumy on Monday the 12th.  At this point I have no idea if it is doing anything.  By looking at her hand you can still see swelling so I think the only way to truly know is by doing another MRI.  I am not sure if the doctor will order one right away or not. 

I was really happy to meet (virtually) some other moms last month who have children with Psoriatic Arthritis.  I even met someone who has a daughter with arthritis without the psoriasis so it will be nice to keep in touch and compare stories with each other.  Her daughter is a bit younger and unfortunately has more pain and symptoms than Alex.  She just started Enbrel so I am praying she gets lots of relief soon!  

For anyone just starting this journey I wanted to get you started with some great sites.  There is a ton of information there for you!  

The Arthritis Foundation-Lets Move Together

National Psoriasis Foundation

Progress?

Hello and happy February to you!!  This year is just speeding by and we are now entering our crazy months.  Between Feb 25th and Mar 19 four out of the five of us celebrate our birthdays!!  It's fun but always a bit crazy...planning birthday parties, dinners, gift giving etc.  This year has even a couple extra Feb bonuses with a concert on the 17th and Alex acting in her school play the week of the 25th.. Lots of crazy fun ahead!!

 Alex is doing very well.  She has been getting her injections for just over a month now.  You can't really see a difference by looking at her hands yet but I pray it is doing miracles on the inside.  She is tolerating her shots well....no reactions, rashes or rejection of any kind.  She has had some injection site redness and tenderness but that is completely normal.  It has strangely become very normal....me giving her a shot.....just like me giving her a tylenol or something.  She doesn't complain about having to get the shot and my hands no longer shake while giving it to her!  

On a personal note I had a tough day recently thinking about it all.  I know we are so so so lucky that she is not in pain.  She has said that she does feel some stiffness in the morning but not much.  What got me was reading about other patients who have Psoriatic Arthritis along with very severe psoriasis.  Alex does not have  psoriasis at this point in time but the odds are against her....her grandmother and father have it so it doesn't look good.  Ben's ( her dad) didn't get really bad until he was in his 30's.  Having a visible skin disorder can be very damaging for peoples self esteem. I worry that if she gets it before she has had a chance to mature into a strong woman that it could somehow hinder her.  I read stories about kids being teased and tormented because of their skin issues. It just breaks my heart.  All I can do is just pray that she never has to deal with any of it and if she does get it that she handles it with grace.

Did I mention that her birthday is February 25th and she will be 14!!  Wow....unbelievable!  She is becoming such an amazing young woman!  She still loves reading, theater, Disney and oh yeah reading! She is beyond excited for the new Hunger Games movie coming soon!
Well, thanks for reading another update! As always please leave a comment or note for Alex....she does read them.  Take care!!

Its Been A Year!

Wow, I can't believe it's already been a year since we found out about Alex's arthritis!  I'm sorry I don't update this blog more often but there hasn't been much to update......until today.  

Alex had a check up with her rheum doctor today.  As of her last appointment things seemed to be moving in a good direction.  Her swelling looked much better and we were told to just continue with her meds.  I didn't attend her last appointment (which will never happen again) and apparently the last MRI that she had had was not in her file when Ben met with her.  Well....today when I took her,  the doctor was sad to see how swollen her hand had become again.  I mentioned that it was especially disappointing since her last MRI was showing improvement and that's when things got a little crazy. I guess she thought that I had never taken her in for that MRI. The doctor seemed to know nothing about this last MRI and went scrambling to find the results. She eventually did find it and seemed so confused why she didn't have it at the last appointment. 

So she begins to read the findings to me and not only was there an increase in inflammation in the joints we already knew about but now there was a problem in her knuckles...it seems to be moving up her hand. 

So based on these new findings the doctor now wants her to start Enbrel (the dreaded shots).  She seemed very confident that this medication will stop the progression of her arthritis and hopefully even get her into remission.  For now she is to continue the Methotrexate as well. She said that once we see that the Enbrel is working we can start tapering off the MTX.  

My next step is finding out how much the meds will cost (apparently it can be up to $2000 a month without insurance).  Luckily we do have health insurance but it could still be pretty pricey.  The doctor did mention some sort of  offset that Enbrel will provide you with if you are a new patient so she is working on getting info on that for me.  Once we actually have the meds in hand Ben and I will have to go attend training on how to give the shot to her.  I have read and heard that it's not that hard and is probably more difficult for the parent than the child.  Still this was my worst case scenario so I am not too happy about any of it.  I know things could be much worse so I am just trying to be thankful for that. 

Other than that life is pretty good.  We are in full school mode and the kids are already looking forward to the holidays ahead.  It was funny....when leaving the docs office today she said "Have a nice Thanksgiving" and I looked at her like she was crazy.  She then pointed out that our next appt would be in December.....yikes!!  

Alex and a friend at a Halloween church event. 

So, just in case it is another few months before I post again....Happy Halloween, Happy Thanksgiving, Merry Christmas and Happy New Year!!!!