Mia's 136th Blood Transfusion

You are a brave girl Mia, just like your shirt says. #BeBrave

Be The Match Board Meeting

Girls night out on the town for a special dinner at Tempe Mission Palms for the Be The Match Board Meeting. Mia and Little sis Madi were so excited to help and be a part of something so awesome.

Here's our Arizona Be The Match crew. Mia, Madi, Miss Linda, Miss Aubrey, Chris, and dad. Lets do this guys!

Quick family pic...minus the two older sisters.

Sharing our story of living with Diamond Blackfan Anemia...Mia tells it the best because she lives it.

Thank you everyone for an amazing night!! We hope to help YOU recruit people to save lives. It's amazing what can happen when you surround yourself with like minded people, saving lives is our passion.

So nice to meet you Mr. Chell!! We will continue to share our story in hopes of inspiring people to sign up for Be The Match!

Madison somehow collected a lot of money for Be The Match...to funny! Madi you rock, and dad thinks you should be in sales!! 

We love you Aubrey!!! <3 And happy Birthday!!!

Testing

Today was a really busy doctor appointment day...we started off with a 2 hour fasting glucose test at 10:45 am...that was a pain but we did it. 3 pokes later we were done by 1:00 pm and got brunch at the Good Egg. Yummers!!

Then we went to her hematologist for a hgb check. Yep, low blood counts at 9.2 so then we headed over for another poke for a type and cross for a transfusion on Friday. 

Horsing Around

Another horse lesson at Welcome Home Ranch...Mia LIVES for this. It's her sport.

Well Hi Buck!!! Remember me?!?! His face...haha!

Mia's Yearly MRI

Thank you for all the prayers, thoughts, and well wishes as Mia went in for her yearly MRI to check the amount of iron that deposits on her organs, mainly the heart and liver,  with all her life saving blood transfusions. It's ironic that the blood the allows her to live longer on this earth is also the thing that slowly over time is a silent killer called iron overload. There is simply no easy way to take the iron out of transfusion patients. Thankfully DBA patients are living longer with chelation therapy through IV's and an oral medicine called Exjade. Mia hates, I repeat hates taking this awful tasting medicine, but as a parent...you know it HAS to be done. So good job Mia for taking your meds!

Mia's 135th blood transfusion

Mia made it since her last blood transfusion on December 4th to her doctor appointment the following year...January 4th!! She made it through Christmas, a vacation to California, New Year...AND over the weekend. Mind you, she was getting very pale and tired and we couldn't be seen since outpatient is closed for holiday's and weekends. Her finger poke proved her HGB was low at 9.0 so she was ready to be transfused. Mia decided that she needed to feel better now. So we headed straight over for a type and cross. (Usually we do this the day before but since Mia didn't have school we thought we'd try getting in now.)

A long wait over at registration to get us all checked in for the new year but that's OK because we are so thankful to have health insurance...what a blessing that has been to us all these years! We don't know what we'd do without our awesome insurance plan!!  #BLESSED 

Saving Arizona Blood Drive

This morning we headed over to a massive blood drive at the Tempe Center for the Arts to say thank you to all the blood donors. We met some very nice people!