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).

Infection..cont

Infection

The last few days Mia has had a lot of pain on her forehead & eye and some bleeding from the malformation on the roof of her mouth. Yesterday while she was at school things started to get a bit worse. In the afternoon the school nurse called me to say Mia was in a lot of pain and wanted to go home.  When I got there to pick her up I noticed that her forehead & eyelid were red and swollen.  Mia said it hurt to touch or move her face....as the evening went on her face became more red, swollen and was warm to the touch.  When Mia woke up this morning it was even more red & swollen and  she was running a fever well as feeling sick to her stomach. We called her drs at UW who instructed us to try to get her in to see her pediatrician so that she could be treated faster. The pediatrician was able to see her this morning. He was very concerned with the infection ...he said this type of infection could get into her blood stream and even go to her brain, so we needed to treat it aggressively. The Dr ordered for her to have her blood drawn and then she got 2 shots of antibiotics in her legs (2 nurses did it at the same time so that it would be over quicker). Mia got pretty pale and sick after blood draw and shots,  once she was feeling good enough to get to the car we headed home.  The Dr wants Mia back at his office tomorrow morning at 8am so he can check on her. We are home now and she's been resting on the couch.  She hasn't been able to sleep or eat much the last couple of days, so I'm praying the antibiotics work for her. 

Headed home

After a long day ... the MRI is done, IV is out and we are headed home! Mia is doing pretty good just tired and ready to be home.

Doctor apts...

This summer Miss Mia has been have some pretty intense pain and it's been occurring more frequently. 

The last 5 or 6 weeks have brought on some added challenges for Mia. She has been feeling nauseous, unable to eat at times and has even lost some weight.  In the last week or she has also started to have some chest pain. 

I called her Drs at UW children's yesterday and they felt that Mia should be seen right away.  So we left home about 9 this morning as she had 2 appointments today. Both of the Drs that she saw today felt that Mia needed to have her blood drawn to check her labs and an MRI of her head & neck asap.
MRIs normally take awhile to get scheduled but they wanted her to have it before she left the hospital. So they were going to admit Mia to the hospital if the MRI could not be done today.  Luckily they got her in the schedule, she has numbing cream on her arms now and will be getting blood drawn and an IV put in shortly.
Noah and Addy had came with us today, poor addy cried hard at the idea of Mia having to stay.  Rich is taking Noah & Addy home now and then coming back here to Mia & I.
As long as everything looks okay on the MRI Mia will get to go home this evening.

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.