Saturday, January 24, 2009

I see a mansard roof through the trees...

It's a Vampire Weekend! Mid-way through our January, and we are movin' & groovin'!

I have been BUSY BUSY BUSY working on headbands for TOTTIE'S PRETTIES because I am so psyched to double my amount of donation this year. My point of making Tottie's Pretties headbands is to share the profits with CARRA (Childhood Arthritis Rheumatology Research). In 2008, Tottie's Pretties donated $1500 to CARRA!
AND this year I would like to also share the profits with the Uveitis Foundation where we visited a year ago for Charlotte's arthritis in her eyes (Dr. Stephen Foster). They are doing amazing work in Boston for Children with uveitis & the ability to help them with their research would be fantastic! So please see my ETSY site (on the right) & send me your email so I can keep you looped on monthly promotions (this month, I donate a soft band Tottie's Pretties in your family name to the Childrens Day Treatment Center at Portland's Emanuel Hospital where children receive chemo every day - So far, I am sending in 10 for Valentines Day!!).

Charlotte has remained quiet (not her but the arthritis, tee hee!) and we continue to truck along at Remicade (chemo) treatments every 4 weeks, and eye appts to make sure that the chemo is doing its job, every 4 weeks. Methotrexate (.5mls orally 3x a week & sub-q injections 1x a week) is still part of the equation as well. Other than that...Check out her NEW 'do! She has grown taller recently, and she just SEEMS like she's getting so much older every day - her sense of humor is contagious & she has made me laugh to tears before! 3 1/2 looks good on her!

The last few weeks, I have had some frustrating feelings as a parent of a child w/ multiple doctors. Its been the continued differencing of opinion that can happen. And what seems to be the lack of empathy for the other doctor's opinion, the lack of proactive approach of saying, "Hmmm, interesting, I would love to converse with Doctor B & get back to you on a game plan we all can agree upon."

Instead, its been left in our lap as parents to hold steadfast to our "hunch" or "gut feelings" because in our situation, neither of us have a medical degree & would LOVE to rely on THEIR opinion, but who's when multiples are involved?!?! We read, research, talk to other families in their experiences & end up going with our 'gut' when talking to the multitude of dr's that we work with.

These medications that our children are on, are not cheap! So when you are not geting a cohesive agreement on the path you should take for your child, yet that path puts a dent in your family budget, where's the comfort of SOMEONE saying, "I know, I know, but you are doing the right thing."

Now, let me save you the email saying, "Erika WHAT's GOING ON!?"

And for our family, its nothing more than my last post (which I talked about our differencing recommendations). But I talk w/ other families about JRA, uveitis & our situations & lately, I have heard one too many stories that are similar to ours, differencing of opinions/lack of empathy with those opinions/neglect of Drs to learn more from each other regarding those differences/dismissing attitudes towards patients families.

We have a support group, if you will, of people we talk to on the phone, over email/facebook or get together for coffee. And I am sad, sad, sad, sad, beyond belief & frankly fed up on this issue.

And so the question is.... the multitude of questions are:
1. How can we feel secure as parents going in one direction with one doctor when he's not getting "consensus" from the team?
2. Why are dr's dismissive versus being proactive with us or their peers in coming up with a cohesive solution or at least in getting educated on their reccomendations?
3. When is it time for a 2nd, 3rd or 4th opinion?
4. And if you get that other opinion, and its not in your hometown, how do you not burn bridges with the drs you do/need to work with in your own backyard?
My girlfriend & I, today were talking about having & being a support to each o ther in raising our daughters in today's society & community when there is SUCH A differencing of opinions THERE too, between moms/peers & what they allow, dont allow their children to do (that will be another post). I said to her: "Its a full time job being our daughters (childrens) advocates, its beyond overtime when one of them is sick/has a disease or is impaired in someway."
To be continued...


Lisa Wheeler Milton said...

First of all, I hope that shaking was you, dear Erika, dancing along with the girls, because nothing is sweeter.

I've never had any consensus between my team of doctors, especially between four competent, needed specialists.

I've had conflicting advice; had my concerns dismissed.

And so I find myself unwilling to pick up the phone for checkups with each one because it's exhausting.

I wish I had a better answer for you and your gut.

I think you two are doing a fab job with your girls.

Jacob's Mom said...

I am sorry Erika that you are getting all the conflicting advice!
I think each and every doctor has their own way of doing things. They don't want to be told things from other doctors. It is too bad that they don't work together on helping the kids, like we need them too! It is so important for us to be educated and do our own research so we can question their recommendations. Are you debating on the weaning off the med? Go with your gut. What are you thinking?

Go check out the pics on my blog I just posted. I love your header picture. So pretty. Charlotte's haircut is so cute too!

Heaven's Eye Phtotography said...

Cutest little haircut on Charlotte! I HEAR you loud and clear...over:) "Find something to believe in, and just believe"! You are learning to go with your gut and you are doing an amazing job with every little and big step that you take. The important thing is that you are going forward...even when you get knocked back a few steps, you are always pushing forward. Keep up the remarkable work and remember to take care of you! K