In case you were wondering...

I can't believe it's been almost six months since Mila's hemispherectomy surgery. We've been saying almost every other day that we need to post an update but never get around to it.  It seems like there is so much to write but I'll just stick to some of the important stuff. That way I won't put it off any longer. 

We're actually going back to Cleveland this week for her six month follow up appointments and testing.  The good news is Mila is doing pretty well and has had no seizures since surgery!!!  Praise God!

She continues to amaze us everyday with little things that may seem basic for most kids but are truly incredible considering her circumstances.  Mila's personality is really coming out and she cracks us up all the time doing things like a typical two and a half year old.  She's learned how to scoot to get around which keeps us busy going back and forth between rooms to keep an eye on her. 

She still gets in-home therapy 3-4 days a week between physical, speech and occupational. She isn't able to walk still and has a hard time even putting weight on her right leg to try to stand since surgery. This has been hard considering she was so close to walking on her own prior to surgery and she loved to walk along furniture.  But hasn't been able to since.  She's also getting bigger and heavier which makes it more difficult for us to pick her up and carry her all the time. 

Her right arm and hand are also not very useable. She does try to use it and can lift it up and down, which is a good sign.  Hopefully in the future she'll be able to use it more as a helper hand.  Her vision cut from surgery is also noticeable at times when she can't see things at certain directions. 

We've also been weaning her off of one of her anti seizure medications for the past month. So far so good.  She has been trying to talk more lately. Which could be due to less meds or speech therapy or both.  She repeats sounds and occasionally can get a new word out pretty clearly, which is absolutely awesome.  "Momma" has been a new one lately and you can bet someone is absolutely ecstatic.  Marcela has waited a long time to hear that. 

Eating and drinking have improved.  She relearned pretty fast after we got home and it hasn't been a huge issue.  We still have to make sure her food is soft and cut into small pieces but it's more related to her cheek and teeth. 

Mila's sleep has also improved a lot. It's not great but it makes life way more manageable.  We were living like complete zombies for two years. 

We feel that the "static" that was going on in her head is gone and she can comprehend things more clearly now than before surgery.  Hopefully everything will go well with her follow up tests. 

We hope that she can continue to amaze us each day as we know things can change at anytime.  So for now we'll just keep on counting our blessings and take things as they come. 

Thank you to everyone who has asked about and continued to pray for Mila and to our friends and family for the support and help with even the little things. 

Back at Home!

Here is a long overdue update for everyone.  We finally made it home after being gone for almost 7 weeks!!!  We were discharged from the hospital on Thursday the 21st and we flew back home to California on Monday the 25th.  We were all very excited to get home and sleep in our own bed.

There has been a lot of issues trying to get everything in order so it hasn't been all relaxing and stress free.  We were supposed to have some home nursing and therapy set up before we even left the hospital and it was to be in place when we got home.  But things aren't really working as planned.  It's kind of like the twilight zone.  Going back and forth between so many different people, companies, insurance, getting different stories and spending hours a day on the phone (thats Marcela's job, I have no patience or understanding of the health insurance business, thank God for her).  We hope to get things sorted out this week.

Mila is doing pretty well.  She is eating better and actually has quite an appetite.  Her drinking is slowly improving, we just have to really regulate how much she takes in and tell her to take breaks to prevent choking.  We're trying different straws, cups and techniques to help her out.   Meal time is always an adventure with her.  Usually takes a very long time and is pretty messy.  A lot of it has to do with her cheek and teeth issues.      

The hardest part is keeping her entertained.  She watched so much tv in the hospital because thats all she could do.  Really didn't watch too much before that.  I've seen Wizard of Oz, Mary Poppins and Frozen literally hundreds of times over the past 2 months.  Whatever works though, if it helps calm her and keeps her attention.  Plus I've got some really good jams in my head throughout the day.  

Mila still needs lots of rest and time to heal and recover.  The surgeon said it could take a year or so.  She seems really bored and agitated at times.  I think she realizes that she can't do some of the things she used to.  Mila was able to walk along furniture and tables (with us behind her) before surgery and use both hands to play.  Now she can't put weight on her right leg and her right arm is mostly limp.  Who knows what kind of feeling or sensations she has in them at times.  Hopefully the physical therapy will start very soon and get her going again.  

Much love and thanks again to the #MightyMila tribe out there.  You've helped us get through this part of our journey and it continues on.

Checking the vitals on Pluto & Pooh Bear

Playing at the Ronald McDonald House

Napping on the flight home

Happy girl at home

Look who turned the corner!

Amazing what a little rest and pain management can do.  Mila was finally able to turn that corner in her recovery over the weekend. 

She started slowly eating on her own on Saturday and is making more progress at each feeding. We got our first smiles on Sunday since before surgery.  She got the stitches on her head taken out Tuesday morning and by Tuesday night she was sitting up on her own and being playful.  Such a good sight to see our little girl back. 

We are cleared from neurosurgery for discharge but have a lot of other things that need taken care of first.  Marcela and I need to learn how to put in the NG tube for feeding and medicines... Not looking forward to that. Hopefully only for a few days until Mila is getting enough nutrition and hydration on her own.  

We also have to figure out and have in place all of her therapy needs back in California.  We found out that through my insurance that we are able to get in-home therapy for Mila.  Such a blessing.  We can get her home to get proper rest and out of a hospital setting to do things on our schedule.  We hope to get the therapists she already has and loves to work with which will make things even easier. 

Things are finally looking up and we should be back home in the near future.

Thank you to all of the #MightyMila supporters out there. 

Wish everyday was like the weekend around here

Weekdays are like a zoo. Weekends are like a ghost town.  No constant interruptions and people coming into our room every 10 mins.  And guess what?  Mila is sleeping, taking a nap during the day, like a 2 year old should be able to do. Especially one who just had her skull cut open and part of her brain removed.   The pain meds we just gave her are helping her sleep because she was miserable before that. But at least she can rest now. We don't have to worry about her being woken up by someone who wants her to do a little dance or bring a food tray we've been trying to refuse to get for a week. 

Don't get me wrong, I still feel confident in most of the team of doctors we have and there have been some great nurses and doctors who have actually listened to our concerns. But a lot of them just don't "get it", whether they are desensitized to this thing, or it's just another day of work and following orders, or they're not exactly familiar with the extent of a hemispherectomy. 

The saddest part of all of this, and I'm pretty sure you can apply this to most hospitals because this is our third one and it's all been the same, is that I have yet to have anyone mention the importance of rest in this recovery.  I feel like when we mention it they look at us like we're crazy or just completely pretend they didn't hear it. 

Mila seems to be a rare case in that she is taking a long time to come around. But it happens, they've told us that it occasionally does. Some kids are up and moving in a couple of days.  Each case is different. 

Mila's in a bad cycle of not sleeping at night, due to pain or getting interrupted every hour or two and not being able to catch up on that sleep during the day.  Also when she's awake, Marcela and I are awake.  They want her to start moving around and be more alert during the day, to be more active in physical therapy and start progressing more being able to eat on her own.  There is no one in the world that would like that more than Marcela and I.  But I'm pretty sure most people when they don't get decent sleep or are in severe pain are probably cranky, miserable, exhausted and don't really perform their best. 

To me rest is more important than therapy.  Especially right now. I understand how much physical therapy is needed. I didn't come to the decision of removing part of my child's brain, partially paralyze one side of her body and cut part of her vision in both eyes just to have her lay around all day.

We're blessed that there is a surgery that could help our daughter and surgeons and doctors that are capable of doing it.  Thankful for modern medicines and procedures that cure and help health conditions when nothing else can. But one of the problems with the medical system we have is that too many are looking for the quick fix and routine process of potions and pills and not listening to our bodies. Which are always trying to tell us something.  Mila's is saying let me get some sleep damn it. 

Rant over, thank you for listening. 

Still waiting for Mila to start improving

 Things are still pretty rough around here so the days are long, busy and we are stretched thin. We aren't getting much sleep so keeping everyone updated is sometimes a challenge. We are ok and will get through this. 

Mila's test results came back with no infection. I think doctors don't really know what's going on they just said it must be all the inflammation. She is ok just very miserable, uncomfortable and over it all. She keeps getting slight fevers and throws up about every other day (we think it's due to all the meds) but still in the clear for hydrocephalus. However they are watching carefully. 

She still has the NG tube and hates it but needs it because she still isn't eating or drinking anything. She just can't figure it out. I feel like today she might be slightly better but it could be wishful thinking. I'm hoping she is and we will be able to see a difference in the morning. 

There is a lot going on but I need to go to sleep so will update later. Just wanted to let everyone know Mila is trying her best and is very slowly coming along. Let's just pray no more set backs and her body can start healing.

They expect us to be in the hospital until around wed and if she is better transfer us to inpatient therapy in another hospital for about a month. We aren't so sure about that plan but that's a long story for another day.

Thanks to those who check in, sends messages and gifts! It helps us keep strong!! Love all of Mila's tribe and feel Blessed you shower us with so much love.

Hope we get some answers today

Since my last post on Monday not much has changed. Mila is not making any progress.  If anything things are going downhill. Her pain is increasing and she's to the point where she doesn't want us to touch her or even hold her hand. I know along with the doctors she needs time to heal however it's obvious something isn't right.

Her surgeon talked with us yesterday (tues) and decided to do another CT scan. Even though it was clear just the other day, things like hydrocephalus don't always show on these scans and things can change pretty quick. He also decided to do a spinal tap. As much as I hate to put Mila through any more, I knew this was coming based on Mila's condition and actually thought it would take some convincing to get the doctors to press more and do these test but I didn't have to. All of Mila's doctors, nurses, team of surgeons and epilepsy team agree that this needs to be looked into and it's time that we get some answers. 

The Surgeon is doing the spinal tap to check for infections, mainly aseptic meningitis. She doesn't have all the symptoms of this but I'm relieved to get the test done even if just to rule some things out. The surgeon thinks Mila has some blood and fluid build up and hoping this will also relieve a little bit of pressure. 

Another doctor that's been keeping a close eye listened to my concerns and agreed that she needed better pain management. They've tried different pain meds and some work a tiny bit or for a short period of time but Mila moans in pain most of the day. It was getting pretty bad yesterday and luckily he came in during a time she couldn't take it anymore. He decided to start giving her small amounts of Valium to relax her muscles and settle her down a bit. I felt like that's exactly what she needed. She doesn't want her neck to be touched at all and doesn't want to move her head plus she's in agony and irritable. It has worked so far and we all finally got a little bit of sleep. Rick and I are trying to convince them to give us some everytime she gets some. ;) 

In addition to all of this poor Mila has been poked for blood work and ivs so many times we've lost count. The last time being at midnight last night. It's never fun but it's always that much worse when we have to do it in the middle of the night. The time before that it took 3 times (again) before they could get it. It's torture, my heart breaks everytime. Please pray we find answers soon because Rick and I know Mila can't take much more.

We will update you with results when we can. Once again thank you #teammightymila, I just can't say it enough!!! 

Waiting

So we got the CT scan results back and everything looked good. It showed no hydrocephalus.  Still at risk of developing it though.  They decided to hook Mila back up to an EEG to see if they could capture any of those episodes or seizures.  So far nothing yet.  She just seems really uncomfortable a lot of the time. 

Just sitting here waiting for her to turn that corner!!!  Come on Mila, you can do it!!!  Time to start getting better.  Mama misses you. 

On a side note, we got a nurse today that we had a few days ago! Thank God because Mila is finally resting peacefully again because of her. She helped us and Mila so much on Saturday and kept searching for answers and didn't stop until she figured out how to help. Unfortunately it's when her shift ended and directions weren't followed that things began to fall apart that night. (Not saying all the suspicious activity was the night nurses fault.) So just a few hours into her shift and my baby is feeling better. Special prayers for nurse Molly for going way above and beyond!!!

Sometimes This is How Our Nights Go

3am and up for the long haul. Marcela has just laid down. I made her. Been a rough night. Mila's having some activity we believe are seizures since around 9pm. She can't sleep. On a medicine cocktail. Rescue dose of Ativan for seizures at 1220am.  Still having activity over 2 hours later. Falls asleep for a minute then eyes open and blank stares. Drifting to the right. Just like her seizures before surgery. They want a level of her Phenobarbital medication. Three pokes and three veins later they finally get it. Having breathing issues. Sounds congested. Respiratory lady came in. Just add it to our tab. They say lungs are clear, probably mucous in back of throat. They suction her mouth & nose, almost until she gags. Its still there when they leave. Sounds like a mucous, phlegmy thing. Maybe its just saliva. I don't know. Falls asleep, small cough & wakes up.  She's exhausted, beat up & bloody. Laid out. Dried blood on head still from surgery.  Massive incision & stitches on head. Mad Max style. Make that questionable activity over 3 hours after seizure rescue med. This girl's a fighter but she's been in a lot of rounds. My legs are getting wobbly. I should probably sit down. Not long before I'm back up though comforting my girl. Poor kid just can't get rest. 445am episodes still haven't stopped. Heart rate goes up. Forgot to pay attention to that. Blood levels come back. Phenobarb low. Going to give some more. Breathing issues have subsided. One good thing. Extra dose of Phenobarb in at 515am. Coffee time for me. Episodes continue. 545am Mila finally sleeping, peacefully I think, hopefully. Marcela's awake now from the beeping and alarms.  605am another episode. Neuosurgery doctor comes in. We explain the situation. Needs to talk with epileptologists. I go to sleep for an hour? Now up from the morning routine. Morning meds given. Find out Mila had no pain meds for 11 hours. Should be given every 4. Definitely part of the problem. Someone dropped the ball.  Time to OCD over everything now. CT scan ordered. Mama bear is always in affect, now papa grizzly bear is out of hibernation.  Time for more coffee. 

Post Surgery Update #4

Too tired to do a long blog post right now. So just a quick update. Mila got out of picu yesterday but it was a very hard day on her and she moaned most of the day. She didn't sleep good Thurs night, couldn't sleep yesterday but they upped her pain meds and she finally got some rest this afternoon. She was a little playful a few days ago for a short period of time but the last 2 days she is just kind of out of it. Please keep lifting her up in prayer as there is also some questionable seizure activity going on and it's increased tonight. We will update with more detail when we get caught up on rest. 

Post Surgery Update #3

Mila opened her eyes up for the first time yesterday.  We were very happy to see them.  She also had some physical therapists come by. I thought it was a little too soon and that Mila wouldn't do anything for them, especially since she is on a lot of medication and pretty out of it.  Amazingly, she grabbed some toys and put them in our hands.  It was a great thing to see. They also sat her up and tried to move her head a little bit but Mila didn't really like it or respond well to it. 

A speech therapist came by to try to get her to sip through a straw and eat some pudding but couldn't really get her to.  She's not really opening her mouth much or swallowing.  So right now she's being fed through an NG tube. 

They also felt comfortable and were able to remove one of the tubes coming out of her head.  This one was under the skin draining blood from the surgery.  This is good considering how much blood she lost.  We knew she lost a lot but didn't realize it was about 3 times the amount of her body's volume.  They had to do 3 to 4 transfusions during surgery. Scary stuff. 

There is one more tube in her head they hope to remove tomorrow. This one is draining fluid from the brain.  When that is out we should be able to move out of the PICU and onto the epilepsy floor. 

Mila's still resting most of the day and on a lot of pain medication. She hasn't moved her eyes to the right or really moved her right arm or leg.  That is expected with the surgery though.  Something we hope to regain most of in the future with therapy. 

We also wanted to say that we have had some great nurses taking care of us.  The good ones truly make your days easier and we greatly appreciate them.  So happy nurses week to all the hardworking nurses out there. 

Post Surgery Update #2

It's 7pm and things are looking up! Mila's heart rate and breathing have improved greatly. Breathing is pretty stable, her heart rate is all over the place but doesn't get nearly as high as it was yesterday.
She hasn't opened her eyes yet but we know it will just take time.

The PICU told us their main concern for today was her blood loss. It slowed down a lot since around 4am this morning but as of this 11am she was still losing more then expected and they said they might have to give her more blood. However this afternoon it's better so they haven't done that yet. I feel so much better now that it's slowing down.

The surgeon came in not too long ago and we got to ask him the biggest question we've had... When we had our original consult with him he said he would be doing a modified anatomical hemispherectomy on Mila's left side of her brain and leaving in as much as he could, which included the frontal lobe section. However, right after surgery we were told he removed more than he planned incuding the frontal lobe.  So we were wondering what he saw that made him change?  I think this took us back for a second.  However, the surgeon let us know that Mila's frontal lobe looked pretty bad so it needed to be removed. This is important because the goal is seizure freedom so you want anything causing havoc to be removed.

Saving the best news for last... Mila was crying a very weak and soft little cry and in that cry she said Dada!!! (Dada was Mila's first word and mainly the only thing she normally says besides Hi.)  A few hours later she was crying the same way to let us know she was in need of more pain meds and the nurse looked up at me and said " Did she just say Mama" I replied with a big smile, Yes she did!!! Mila has said this in the past but she hasn't said it in a long time.  We hope this means her speech was already transferred to the right side of her brain (speech normally comes from the left) and maybe she will be able to start talking one day soon!!! Also it's a little something to let me know my girl will come around slowly but surely!!!

Yesterday was extremely hard on us and I just can't thank you all enough for all the support! I know I say thank you a lot but it's because I'm just so touched and appreciate it so much. Please keep the prayers coming. Also we thought the word was being spread around that she was stable but didn't realize until early this evening that we only told a few people and never posted it anywhere. Every time I tried to update this blog I would get interrupted or more importantly Mila needed me to hold her hand and comfort her. I started this out saying it's 7 well it's now actually 11:43 pm. Ya, that's the life in the hospital sometimes.

Post Surgery Update #1

Mila has been out of surgery since around 2:00 east coast time. She's had some issues. First of all they said she lost a lot of blood during surgery, over 800ml. They had to give a few blood transfusions but said she did good.  Shortly after when we got to finally see her she had a pretty long seizure.  We weren't sure at first because we thought she was just trying to come out of the anesthesia.  She went into status and I believe she was having a seizure for 30 mins to an hour. They had to give her large doses of her anti-seizure meds but when that didn't work they had to give her a rescue med. This calmed things down a bit but her breathing was worrisome and her heart rate shot up to 220 and kept going up.  They gave her some fluids through IV and were able to get her heart rate back down. This was extremely difficult to stand by and watch and once again not be able to help my daughter. After they calmed things down Mila finally seemed to be getting the rest she needs.

Mila has two drainage tubes coming out of her head.  She is losing a little more blood than they would like, so it's now midnight and they just had to give her more.  This is making me uneasy. She also isn't responding much and hasn't opened her eyes. The doctors from the neurology team keep checking on her and are trying to get her to open those beautiful eyes and to move her right side, but not much yet.  

Going to try to get some sleep.

The day is here

Mila is in surgery right now.  So far things are going well.  Just wanted to share this again to everyone. We really can't say thank you enough....

To all of our families, friends, strangers and those who have given anonymously and have donated, said a prayer or a positive thought, we want to give a sincere thank you.  You have all made this process a lot easier on us.  The outpouring of love and support is something we couldn't have ever imagined. 

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.  :)

Time to Catch Up

So our idea is to use this blog as a means to keep people updated with Mila's condition.  This is no easy task.  With countless doctors appointment, therapies, insurance phone calls, hospital visits, on top of taking care of a special needs child 24/7 who doesn't sleep well at all, lets just say it is beyond exhausting.

So to start with I'll give you a little background and timeline on what has gone on in our live's in the last couple of years.

Mila was born with a rare neurological condition called hemimegalencephaly.  Basically meaning one half of her brain is larger than the other.  This causes seizures as well as developmental delays.  We didn't find this out until she was 8 weeks old.  The only difference we saw when she was born was that she had a large left cheek.  It didn't seem to be bothering her and after seeing a couple of pediatricians they thought it might just be some extra fatty tissue.  Our goal was to see a plastic surgeon or cranial facial specialist to get it checked out and maybe fix it down the road.

After getting the run around with insurance for about 8 weeks and not finding anyone that was in our network, we took her to the ER at Children's Hospital of Orange County (CHOC).  That way she would have to be seen by doctors and they would run some tests on her.  Little did we know that those few days in there would rock our world forever.

Here is a quick timeline of events so far:

• 4/12/2013- Mila was born 

• 6/2013- Initial hospital visit to CHOC emergency room. They did an MRI on her and we got the diagnosis that she had Hemimegalencephaly & Cortical Dysplasia, our lives were changed forever. We were admitted for about five days.  They did a Video EEG but didn't capture any seizures.  They prescribed phenobarbital for Mila to start taking for seizures. She wasn't having any but said since there was so much "abnormal activity" going on in her brain that they feel she should be on medication. 

• 7/2013- Mila had her first seizure (that we noticed)

• 7/2013- CHOC ER visit number two for seizures.  We were in there another four or five days.  They did another video EEG and her second medication was prescribed, Topamax. 

• 8/2013- CHOC ER visit number three due to more seizures.  The dosage was raised on her medication and we were sent home after a few hours. 

After that we had seizure control for about a year.

• 8/2014- CHOC ER visit number four from febrile seizures. They got Mila's fever down and we went home after a few hours. 

• 8/2014- We were admitted to UCLA children's hospital for a second opinion & testing.  They did a two day Video EEG & MRI. 

• 11/2014- UCLA for a scheduled Video EEG.  A couple seizures were captured on video.  We think Mila was so traumatized from all the testing and poking for iv's and blood tests that she had a couple seizures. 

• 11/2014- Overnight sleep study at CHOC to check out some breathing problems Mila was having from her facial issues.

• 12/2014- ER visit to local hospital due to febrile seizures. We were sent home after a few hours. 

• 4/2015- We'll be going to Cleveland Clinic in Ohio to see another specialist, another round of testings and possibly surgery, a hemispherectomy. Our surgeon specialist at UCLA is on medical leave and won't be able treat Mila.  So because her condition is so rare, this is our next option. 

Throughout this time Mila has had ongoing physical, occupational and speech therapies.  It was in-home therapy for the first few months but we now go into the local center a couple days a week.

This is only a small recap of some of the major things.  We have constant appointments with neurologists, epileptologists, ENT specialists, therapists, neurophsycologists, specialty dentists, ophthamologists, plastic surgeons, genetics, cranial facial teams and probably more that I'm missing.

We could write a book already about this journey and only be in the first couple chapters so far. 

Rick, Mila & Marcela- Christmas 2014