At last we are in Columbus

We left home yesterday afternoon we were pretty tired and ended up stopping to spend the night in Indianapolis. We drove the rest of the way this morning and arrived here in Columbus at around  1:45. We have been at Mia's eye dr apt since then.  We have not yet seen the eye Dr ....hopefully we will be seeing him soon.  Then we will head to our hotel to check in and then find somewhere fun to take Mia and let her choose where she would like to have diner.  We will update later with more info. 

Eye Apt. / MRI

     About three weeks ago Mia got off the bus after school with tears in her eyes.  She told me that all day she had been struggling to see, even with her glasses on. Mia had her last eye check up about 2 months earlier and at that time her vision had been stable for the last couole of years. We called the eye dr, but even with our concerns of urgency the soonest they were able to get Mia in was May 18th.
      During those long three weeks of waiting Mia's vision remained poor. Mia has also been experiencing quite a bit of pain alongside her changes in vision. She's had both bad days with stronger more frequent bouts of pain and those few days which we are incredibly thankful for when Mia would have little to no pain.
       Two days ago we finally got to see the eye dr, her eye exam confirmed that indeed Mia's vision had gotten worse. There was a not so expected finding at the eye dr as well, her left eye had gotten worse (in the past her left eye hasn't really been bad at all).
     The eye dr faxed a report of the eye exam to the VAC (vascular anomalies clinic) at UW Madison where Mia is seen.  Later that day we received a call from a nurse at the VAC that said the Neuro surgeon would like Mia to have another MRI STAT (as soon as possible).
      Which brings is to today.  Mia and I (Brandy) arrived at the hospital at 9 am. A nurse placed Mias IV around 9:30, the IV is for contrast during her MRI. Mia was a Champ as usual getting her IV put in,  she put her headphones on and listened to her music. Mia uses music to relax quite often,  she uses it to help her relax during times of pain and discomfort.  Mia stays awake for her MRI'S now, so she was a little nervous about that this morning,  wondering how long it would take etc. 
Mia went into the MRI room at 10. The nurse said it will probably take 1 to 1 1/2 hours.
      We are all overly anxious to know what the MRI shows.  I'm hoping that we will get to hear something today,  but it will probably be next week before we hear the results. 
We will update more when we get any information.

Recovery

Tomorrow will be a week since Mia's surgery.  It's been a long week for our Mia.  She stayed home from school last Friday and Monday.  Tuesday she went to school,  but had a rough day and was in tears from the pain by the time she got home. Today she woke up showered and got ready for school but was in a lot of pain and wasn't able to go to school. This afternoon her pain got more intense and she asked me to look on her mouth and see how it looked.  I noticed a few spots where it was bleeding.  She ended up taking a little pain medication but it did not relieve the pain. It has continued to bleed through this evening.  Mia was hungry and tried to have something to eat,  but ended up curled up on the couch crying.  Our poor baby I so wish she didn't have to go through all of this. After a good cry on the couch and some advil our Mia was able to have a few bites of ice cream.  If you know Mia you know ice cream makes everything better!  We are hoping she can get done rest tonight and that it looks betterin the morning but if not we will be calling the doctor

Home sweet Home

We are all happy to be home! It's been a long day for all of us. We are hoping our night goes smoothly and will update again in the morning.

Recovery

Mia is in recovery.

In surgery

Mia is in surgery, 

Headed to the hospital

We left home at around 6:15 this morning,  dropped off Noah and Addy with momo & papa.
Mia has had another rough week,  she hit her head (right side of her forehead) on Monday at school.  This is worrisome because any trama to her malformation can cause it to grow.  She has a couple small superficial cuts,  its red, swollen and painful.  Tuesday evening it hurt her quite a bit, she actually fell asleep with an ice pack on her head.  Wednesday morning she woke up crying with pain. Mia insisted she was still going to go to school,  so she held ice on her head until the bus came and made it the whole day at school.
Her mouth has still been bothering her quite a bit too,  we are hoping one she heels from today's surgery she can get some temporary relief at least in her mouth. 
The hardest thing right now is that Mia is starting to go through puberty which can cause these Venous/ lynphatic malformations to grow at a rapid rate. Needless to say the last year of Mia being in pain is just the beginning of a long road.
We will update again once Mia goes into surgery.