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Wednesday, October 6, 2010

A new road for a tough little girl...

I wish I had some fancy pictures, or some cute little story to tell, but this is just not that post...

Romy Lin had some MRI's done last week on her head and cervical spine.  She hasn't been using her right arm and that has been kind of a red flag...

It started in July, I started noticing it..I talked to my doctor, and he didn't seem concerned by it at all... "maybe she's left handed" he said.  I wasn't convinced, so at her next opthamologist appt, I brought it up.  She told me that babies don't have a hand preference, and that I should talk to my pediatrician about it...she got involved at that point since he has more or less brushed off the subject.  She had some MRI's ordered but when scheduling called me from the hospital the tests had been changed to CT scans.  I was bugged.  I called the pediatrician to find out why, and the nurse told me that CT scans were cheaper.  I was "rather mad".  MRI's show so much more, and are less risky to infants.  CT scans subject her to a ton of radiation, and doctors are finding that babies who have had the procedure are high risk for cancer by the time they are 20...!!!  Either way she would have to be put under...so lets get the MOST information possible...

I tried explaining my case that it wouldn't be cheaper because if they DIDN'T find anything...I would want an MRI because I really felt strongly that we needed to find more out...

If they DID find something...They would want an MRI to FIND MORE OUT...so either way she would have ended up in an MRI...

They didn't feel it was necessary...

So I called the opthamologist and stressed my point there...they agreed, called the pediatrician, and the pediatrician STILL didn't change it....

FRUSTRATION.

Luckily, I have a good friend who has an AWESOME brother who is also a doctor.  She helped me to make that step in changing pediatricians...and I'm SO GLAD I DID!!!

Within the first appt, he addressed ALL of my concerns, and validated them, told me NO WAY did he want CT scans...they were TO RISKY, and ordered her in for MRI's.  He talked about how mothers have intuition, and he listened...!!  I really feel like doctors SHOULD listen to moms...I understand that maybe first time moms might jump at every little thing...but come on people...I've been doing this for NINE YEARS...give me just a LITTLE credibility...it was so refreshing when someone did...

Which brings me to today...we got the results of the MRI's...Romy Lin has suffered a stroke or brain bleed on the left side of her brain.  We don't have a ton of answers yet, but her right arm, leg and possibly the vision in her right eye will most likely be affected.  I am anxious to meet with the neurologists for more answers and a real prognosis, but we are staying super optimistic...why wouldn't we??!!  She is really a happy girl, and even if she has a hard time with these things...she is healthy.  She is strong.  This girl has been through SO MUCH in her little life already...and this won't change that at all...she's a tough little cookie...!!!

I thought it would feel good to be right...but sometimes you don't want to be right...because it's not really about being right...it's about being heard.  This doctor listened to me...and now my daughter can begin her journey...

17 comments :

Kerren said...

Your blessing of intuition and insight into the lives of your precious children is SO vital! I'm glad you acknowledged this and stood firm. She is your baby because you are her loving advocate and will always go to bat for her. Mommies really do KNOW. I'm glad you listened to your promptings and didn't give up. Our thoughts and prayers are with you.

singedwingangel said...

OH don't the sanctimonious doctor's irritate you. I dealt with one with my middle son I got him fired from the hospital for his treatment of my child and I. Because his non concern ignored the fact that my son was dehydrated and had double pneumonia . I am so glad you stood your ground and you found a wonderful doctor who listened to your concerns.

Melissa said...

I'm proud of you Tamra! You are an amazing Mom! Romy is loved and blessed and there is a PLAN for her life. Isn't that a comfort?


About mother's intuition and doctors...Once, I took Evie to the ER because she seemed sick and "off". The doctor was terribly condescending and told me she had a cold "Babies get them." She sent me home. The next morning we went to the pediatrician where we were life-flighted to the children's hospital, and Eve was put on a ventilator for a month. That ER doctor actually came up to our room at the childrens hospital (not the original ER I'd taken her to) and apologized to me for not taking me seriously. She promised to listen to parents better.

Sometimes we just know--- even if we don't want to.

xoxoxoxoxoxoxoxox

Joleen said...

I switched Pediatricians when K was 3 months old 'cause the one we had gone to was brusk and had a horrible bedside manor. When we went in to see his associate I fell in love with her 'Mom' approach and we have been with her for over 8 years! Trust your instincts!!!

Alli Blue said...

Mother's intuition? HELLO DOCTOR! ALways stick to your guns. ALWAYS. Glad you switched Peds. Romy will be perfect!

Laura said...

I've been wondering for a while how things would turn out. I'm sorry you had to go through such a battle. Thank goodness you were willing to stand your ground. It makes you a smart mom who puts her kids first. Not very many people have the courage to do what you did.

I just want to hug you and give Romy a baby squeeze. She is such a sweetie. I believe everything that was said in her blessing, and though the road may be bumpy, I think she's going to be great in the end.

And it's because of you.

Kristina P. said...

Oh my goodness! I think it's intuition, and frankly, The Spirit. I hope she's OK.

Nicole said...

Holy cow! So glad you were able to get a new dr. and answers to all of your concerns. If I were you I would be calling SOMEONE and making a very serious complaint about that doctor and I would call that Dr. directly and tell him your news! That is ridiculous. But it sounds like you're in good hands now and little Romi will be on the right track. Good luck with everything!

Arin said...

I am so glad that you were able to get the help that you needed to move forward. Romy is such a blessed little girl to have a mommy like you-I hear you on the intuition thing. And even if it was nothing, it's better to know anyway. I hope things run as smootly as possible with everything you will be experiencing from here on out.

Davis Party of 5 said...

Your Romy is one tough cookie! What a blessing she is!! I love that you didnt stop with just oneDR's opinion! People make mistakes and lets just say that would have been a big one on the peds. part:( Isnt it funny that when it comes to our kids health the "cheaper" option is not what is wanted. You are an inspiration to us all lady!! Keep being strong andthat will reflect on Romy Lin:)

The Cole Family said...

I hate it when doctors think they know it all and can't be a little humble. I bet they would if it were they child. Romy is such a strong little girl already. This is just going to make everyone love her more.

Cynthi said...

Way to go for sticking to your instincts, no matter what a "doctor" says. Time and again, we see that doctors don't know everything. Romy is just one of those strong sweet little spirits. And I can't get enough of her adorable smile!

The Yearsley's said...

I'm hearing more and more these days about how messed up doctors are and how they think they know EVERYTHING..and could care less about their patients! Whatever it takes to get their money! Well good for you for speaking your mind about the situation...and you gotta admit it's gotta feel sorta good to be right! :) You go girl! Well I am sorry to hear about Romy. But she's one tough cookie for sure and will be able to handle whatever the future has in store for her. She is such a doll!

Heather@WHMB said...

Way to stick with that intuition mama! Best of luck with everything in the upcoming future - I know your little one is going to be great.

A M B S T said...

Oh Tamra (and Brian, and Romy, and the rest of y'all)...we love you. Just wanted to send some hope. You know Matthew had a bleed when he was younger. His prognosis (well, they said he'd die that night...nice huh?!) was if he survived long, he would be totally disabled, a vegetable even. You know Matt! He's anything BUT. There is hope. We love you all!

Angie said...

Sending love...what a tough road you guys have had! <3

A.Lee said...

We are hoping for the best along with you!! She is an amazing little girl with a tough streak in her. So glad you finally got the MRI orders and that your doctor doesn't treat you like an idiot. Not only have you been doing this for nine years, you have been doing it with FIVE children!!! That says a lot!