Back to school

Mia went back to school today. 
She had a nice surprise from her best friend Gwen. Gwen got Mia some craft things and made her a card which she had gotten lots of kids and teachers to sign!
All in all her first day back went pretty well.
On a side note. ..
When I went to the school the other day too get some of Mia's homework, I got the nicest compliment about Mia from her math teacher. She said "Mia handles all of this with such grace and  no matter what she may be dealing with, she always has a smile on her face."
What a great thing to hear about your child. Mia never ceases to amaze us. She illustrates bravery, perseverance and strength that rival most adults. She has shown us that a bright smile can be contagious and can make even the worst of days feel wonderful.
We have to be thankful for our struggles because without them we will never find our strengths.....
So thanks to our little Mia for teaching us all to choose joy and find the rainbows in the rain, no matter what our situation may be! Here we think we teach our children and then we realize they are the ones teaching us.
We love you Mia

Snow day

Mia had a rough evening last night with quite a bit of pain. After some advil, her ice pack and a good night's sleep she was feeling better this morning.  She still has a little discomfort, swelling and bruising today. 
Mia still wanted to get out and play in this beautiful white snow we have,  so we all played outside for a little while.  Now we are snuggled on the couch watching The Santa Clause and having popcorn!

Recovering

Mia is a little more swollen and a little bruised today. Her, Addy, Bella and Mariah helped my mom to decorate her christmas tree today.  Mia is napping right now when she wakes up we are going to decorate our Christmas tree! 

Getting closer to home

Mia has had some pressure and discomfort today from the swelling she has on her cheek and eye area. We are about 2-3 hours from home.  We are all anxious to get home and relax this weekend!

Headed home

The eye dr said that Mia's eye looked good at her appointment the morning.  So... we packed our stuff, checked out of the hotel and got on the road about 10:30 Ohio time.  We just stopped at Cracker Barrel for some breakfast....then we will be back on the road to home!

Morning

Mia is feeling really really sick to her stomach this morning.  I helped her take a shower and to get dressed. ..now it's off to the eye dr...

Resting at the hotel

We got back to our hotel from surgery at around 2 or 230. We all had some food and a nice little nap. Mia is hungry for some diner now,  so we are working on that.  Sorry we didn't get this updated earlier,  I think we were all so hungry and exhausted that we filled or tummys and passed out.

Getting IV out

Getting her IV out and then ready to go back to the hotel for some food and rest.

Sleepy Mia

We finally got to see our Mia!! Rich is working on a post with surgery details.

The surgery

This is our first visit to Nationwide children's hospital in Columbus, ohio. After working with other Dr's in UW Madison who were unwilling to address Mia's pain and discomfort she had been dealing with for the past 18 months, we had enough and needed to do more.

We had been in touch with Dr Murakami during that time discussing the mri results, her medical history and current medical care. He felt he would be able to help address Mia's pain.

Prior to surgery this morning, Mia told him what areas she had regular pain and pointed to each spot; cheek, forehead and below her eyebrow. He commented on how those area's are all tied together and that would fit exactly with her symptoms. She also told him about her mouth hurting, however since he could not visibly see any spots, he felt better to leave that alone for now.

The Dr came out after he finished with Mia's surgery to explain how everything went. As mia told him in the morning, he saw exactly the areas she was feeling pain and injected them with bleomycin. This is what she has had before but the he used a different chemical to mix it with to minimize any swelling. Bleomycin is a chemo medication that, when used in small dosages, can treat these malformations with good success.

He did confirm that the malformation is in her skull but felt that he did not need to be addressed today.

The next steps is to call him after 10-12 weeks to check on how Mia's pain is doing. It may take a few more treatments but the main thing is to keep monitoring it instead of waiting. Especially during the next 3-5 years as Mia goes thru puberty.

We also have another check-up with the eye Dr tomorrow morning to ensure any swelling will not put pressure on her optic nerve causing further vision problems.

Recovery room

The Dr just spoke with us and Mia is going to recovery.  We should get to see her shortly. We will update later with details

In surgery

Mia went in surgery about 10 mins ago

Waiting for surgery. ...

Mia is changed into her hospital cloths and we are waiting to talk to the Surgeon.  Ironically it was exactly 8 year ago today we were in Milwaukee WI for Mia's first surgery. Mia is relieved because the anesthesiologist just came in and Mia will get to be put to slept with gas prior to the putting in her IV. Surgery is scheduled to start at 8 am Ohio time. 

At children's

We arrived at the hospital at 6:30 Columbus time ...5:30 our time and are getting all checked in now.