Still recovering...

Friday night was a little rough for Mia. The swelling had gotten so bad by Friday that Mia was unable to open her eye,  she didn't open the left eye either because then it put pressure on her right eye.  So the days were a little rough for her Friday and Saturday. She couldn't really see so couldn't do much of anything. Mia shows us all her strength on a daily basis, as the rest of us would've been complaining that we couldn't do anything and we hurt etc.. but not Mia. Today (Sunday) she has been able to open her eyes a little bit.  We woke up at 6 am with no power, due to this beautiful (not) spring snow/ ice storm. The power was back on at around 10:30. We were very thankful it came back on because the house was getting chilly.  The kids all played Lego's for hours even after the power came back on, which was great! 

Recovery day 2

Mia was very anxious to get a shower today. However the shower would have hurt her face, so I washed her hair for her and then she took a bath. She was also excited to remove her heart monitor stickers. Due to the chemo injections during surgery any trauma to her skin even removing stickers or band aids to soon after the procedure can cause permanent scars. We were never told this at other hospitals when Mia had chemo injections they just removed the sticker right after surgery and Mia does have some scars on her chest area from this. I guess they will just be part of her battle scars. We are thankful that someone did tell us this information so we will know for the future. Mia is having some pain the morning but has not wanted any Advil or Tylenol yet. I gave Tucker a bath this morning too so he will be nice and clean to cuddle with Mia today!

Home

We are home.  Mia is so happy to see Tucker!!

Mias eye

Just wanted to post these before pics of Mia's right eye over the last couple of months. The part of the  malfornation that is right on her eyeball has pretty much looked like this for 2 months now and been accompanied with eye pain and drainage. This is why yesterday the dr did some injections directly on the eyeball in hopes to aleviate some of this. 

Headed home from Ohio 4.12.18

Mia slept pretty good last night.  She has a little pain this morning so she took some advil before we'r left the hotel.  We are in the car and have started our journey home.  Mia can't wait to see Tucker when we get home!!

Surgery @ Ohio

After some time, Mia finally had her latest surgery this morning. We meet with Dr. Murakami at 8 to go over the plan. He spoke with Mia to find out exactly where her pain is at and how it feels when she has pain, which sadly is all the time. Today he focused on injecting Mia's forehead, eyebrow, skull bone and also on the surface of her eye.

They took Mia back around 8:15am and got things going. Brandy and I patiently waited a few hours. It ended up taking a bit longer since the Dr used a CT scanner to plan out his injection points. Afterward he came out and explained everything turned out as planned, Mia has a few needle marks but shouldn't be that will be visible after a few months. Once we were able to get back to see Mia, she was coming out of the anesthesia and it had to be the best wake up that we can remember. She had a little nausea so the nurses got some sprite and gold fish to help out. Mia had already started bruising and swelling which is only going to get worse for another week. The Dr came back into her room to go over the MRI & CT scans that Mia has had over the past year to show us the various areas we planned to address and then showed us the CT images from the surgery so we could literally see the medicine he injected and how it flowed into the areas of her malformation. After another couple hours she started feeling good enough and we were discharged.

Next stop was to the eye Dr to give her a vision post op check-up.This was very challenging with just having surgery a few hours earlier. They were super great, Mia was feeling very wobbly and not in any shape to be sitting around waiting to get in and wait for the Dr. The receptionist got us into a room right away, bypassing the 50 people in the waiting room. Not only that, the Dr came in immediately and did his check-up. Everything looked good and he didn't feel anything with her vision was impacted. We were in and out within 15 minutes, it was amazing and they were fantastic. 

Back to our hotel for an afternoon of rest for Mia and then some Alfredo noodles to keep her happy. Thankfully she starting to feel more like herself, with the exception of the pain from her swollen forehead and the draining of fluid around her eye that is being caused from it all. We will see how the brownie sundae helps out with her pain this evening. Barring anything major happening overnight we are planning on heading home first thing in the morning.

Infection follow up

As you can see the redness and swelling hacer subsided since our post yesterday.  Thank goodness our Mia woke up this morning feeling better than she did yesterday. We saw the dr at 8 this morning and he was also happy to see Mia doing better.  The shots of antibiotics that they gave her yesterday will last for 24 hours and he decided she should be okay with oral antibiotics for now rather than more shots.  She has an antibiotic to take 3x a day for the next 10 days.  However he is very concerned and why this infection is happening and the underlying cause of it.  He thinks it's unusual that she's had this malformation for her entire life and now all of a sudden this infection.  Mia lost another 2 lbs over these last few days. We are praying that she recovers quickly and that we can figure out the cause of this so that it doesn't happen again. 
Thanks so much to Hallie (Noahs friend) for brightening Mia's day with this kitty and some chocolate covered raisins (one of mias favorite).