One Heck of a Week

So we had one hell of a week since my last update.  Mila continued to be extremely sick and had to get an iv for fluids on Saturday.  We got them to take off her EEG on Sunday as they captured everything they needed and to help calm Mila down a little bit.  She started to finally come around a bit on Monday afternoon barely eating and drinking on her own.  Tuesday she felt a little better and on Wednesday we were able to check out of the hospital and go to the RMH (Ronald McDonald House).

View from our hospital room on a rainy day

Lost phone = dirty laundry diving

Cuddling with Dad

The Fighter

More art therapy

Before we checked out we met with our neurologist Dr. Gupta and neurosurgeon Dr. Bingamin on Tuesday.  We felt confident in what they presented to us and with any questions and concerns we had.  We have decided to move ahead with surgery and it is rescheduled for Monday May 4th.  This will give Mila some time to recuperate and get as healthy as possible.

It will also give Marcela and I some time to get healthy as well.  Not too long after we got out of the hospital, on Wednesday night that nasty bug that hit Mila, hit me hard.  Man I felt like death.  Marcela and Mila had to leave at 11:00pm and check into a hotel to stay away for a couple days.  Apparently they got to enjoy themselves though at the suites hotel down the street with room service and breakfast buffets in the morning.  I was a little jealous of the accommodations.  Now Marcela isn't feeling too hot, so we went to Whole Foods and stocked up on some vitamins and supplements.

We have a couple more appointments next week before being cleared for surgery but thats about it for now.  We'll post soon regarding the surgery, the risks, benefits, side effects, why we should do it, why we don't want to and just our general feelings about it.  Right now Marcela and I kind of feel a calm or confidence about it.  I don't know if it's because we haven't had much time to deal with it with all the other madness going on, or our prayers are being answered and we're just ready to move forward.  I'm sure we'll both be a wreck soon.  I'll keep you posted.

Trying to feel better at the RMH

The Calm Before the Storm

That should've been the title of my previous post.  Thank God we got to enjoy ourselves for a few days because the storm has definitely arrived.  We got to Cleveland on Monday and had our first appointment on Tuesday that went pretty smoothly.  Tuesday night the craziness started when Mila started to get sick throwing up and awake all night.  She couldn't keep anything down including her medicines for the first time ever.  Not easy caring for a sick kid in a hotel room.

We had to cancel our first appointment on Wednesday for the eye doctor and needed to make some calls to see if we should still keep our appointment with the neurologist in the afternoon.  We we're also scheduled to be admitted to the hospital and begin the EEG testing.

We did keep the neurologist appointment with Dr. Gupta and had a pretty good meeting with him.  Marcela and I have a pretty good understanding on what we're facing and he had some questions for us and kind of gave a game plan on the next few days.  He decided  we should still admit Mila to get her some fluids and medicines through iv if needed.

Hooking up the EEG is always a disaster with Mila.  She is terrified.  We knew going in this was not going to be good.  She has had this done five or six times and this was probably the worst.  On top of being sick, having no sleep and being hungry she had to do this.  She was screaming, crying, begging for it to stop the whole time in fear and terror.  It's the worst thing to watch your kid go through.  You can't calm her down, you can't explain why we have to do it, you just have to hold her down and watch.  I don't wish this situation on my worst enemy.

After about an hour to finish hooking her up, which I believe took way too long, she finally started to calm down and began to fall asleep.... And then she went into a seizure.  It was only a matter of time.  It happened at our last EEG.  She gets so extremely worked up that it sends her into a seizure.  This one lasted about four minutes.  I find it ironic that she rarely has seizures but she has them in the hospital.  The weird blessing in this is that they captured it on the test.  So they can locate where in the brain it came from.

I stayed one more night at the hotel and Marcela stayed with Mila.  I went back in the morning and I hear it was a horrible night.  Mila's now got a bad case of the runs (sorry honey when you get older and read this).  So the worry now is dehydration on top of everything else.  They tried to get an iv hooked up in the afternoon but failed.  This is normal.  They can never get one on Mila.  At least they said they would only try once.  We've seen her poked in both hands and feet and not get it.  Poor thing had little scars before she was three months old.

So now it's up to us to keep her hydrated, rested and getting healthy.  Not easy.  A hospital is no place to rest.  When one nurse, doctor, social worker, food server, janitor leaves the room, another walks in.  Thats how it goes.  Eventually you get tired of it.  So you need to get one of these.

We met with the epileptololgist Dr. Wyllie and had another good conversation with her.  Getting any questions answered and keeping us informed of the schedule and game plan.

Friday started out a little better.  The girls got some sleep Thursday night and I checked into the Ronald McDonald house and stayed there.  Mila seemed to be getting back to her usual self.  She had some art and music therapy come by to entertain her and she loved it.

Then it started to go back down hill.  Nap time getting constantly interrupted, Marcela starting to not feel well and Mila getting sick again.  Tired, sick people need rest and it's just not happening here. 

They want to keep us in here and on the EEG until Monday.  We have a rescheduled eye appointment that day.  Tuesday is the doctors and surgeon's main conference to discuss Mila and we meet with the neurosurgeon, Dr. Bingamin.  If they recommend surgery, it is scheduled for next Thursday.  They've made it known that it is only a tentative date.  If we aren't ready, if Mila is not healthy enough, if we need more time to come to terms with it, they will work with us.  Especially since we are coming from so far away,

So it's Friday night, I just had some coffee to prepare me for however the night goes.  I'll be staying with the girls tonight.  Should be good times.

Happy Birthday Mila!

Mila turned two years old last Sunday the 12th.  We're a couple days late to post but finally have some down time for an update. 

We have made it to the Cleveland Clinic and are currently at our first appointment, a neuropsychologist evaluation.  This one shouldn't be bad.  Basically playing with toys & interacting with her to see where she ranks.  This is our only appointment today. Tomorrow we see an eye doctor, meet the neurologist, then get admitted into the hospital and begin the EEG testing. 

So before we came to Cleveland we made a stop in Pittsburgh for a few days, which is my hometown.  Mila got to meet and spend some time with her Grandpa for the first time.  It was nice to get back "home" for a few days, take our minds off of things and enjoy seeing Mila interact with her Grandpa.  She seemed really confused at first seeing him in person and not on a computer screen talking on Skype but she really warmed up to him.  

We were able to hit a few spots in the 'Burgh (Primanti's, Station Square, Mt. Washington, Strip District, the zoo) before we took the short drive to Cleveland.

Arriving at the airport, Franco welcomes us to the 'Burgh

Mila's first Primanti Bros experience 

Mt. Washington, the sun was in Mila's eyes

The Pittsburgh Zoo for Mila's birthday

On the road to Cleveland 

Up early & ready for her first appointment

As always, thank you for your support, prayers, positive thoughts & good vibes. 

It's already April??? :/

I've been on an emotional roller coaster and have tried to write on here at least 10 times but every time I try I end up in tears and just don't know what to say because my mind is all over the place.  So first off let me say "thank you" again for all the support, shares and kind words.  It really helps knowing Mighty Mila has such a large "tribe" supporting her.

Mila is turning two in just a few days.  I decided to give her a birthday party the last weekend we would be in Cali.. also Easter weekend, since we would be out of town on her actual birthday.  Trying to get everything in place for Cleveland and planning a party was a bit nutzo but I needed to do it for my own good.  It was sooo worth losing my hair over.  I have way to much on my plate but I just had to have a party to celebrate Mila's life!  A big thank you to so many of my wonderful friends and family who helped me give Mila a "Frozen" birthday party!  Yes, Mila is in LOVE with Frozen.  It's odd because she doesn't like watching TV much but she was hooked on Frozen the first time she watched it.  Anna is her favorite.

In a few days I will write a post that tells a little about Mila for those of you who have never met her.  For now I just wanted to reach out to everyone because I know so many have been waiting for an update.  

We have started our trip to Cleveland and Mila survived her first plane trip.  It actually went really well.  :)