Interesting turn of events!

I trust you all are doing well!

My pregnancy with Mia really did my body in. During my pregnancy, I noticed I got an umbilical hernia, so after dealing with it for a year after her birth (c section), I finally couldn't take it anymore so I got it fixed. Last October, I had to have a corrective surgery to the previous one - which was nearly unbearable.

About 2 weeks ago, on October 19th, I had my third post-pregnancy surgery due to Mia's health complications. I needed to have surgical drains this time which isn't horrible, but definitely not pleasant or comfortable to have or deal with. Last Friday I begged the clinic to be seen to get the drains taken out by any doctor (mine wasn't in that day), they squeezed me in, but disappointedly, I only got one removed, but I was happy to only deal with one!

Yesterday my friend Carol came with me to keep me company during the 2 hour drive to the Travis Air Force Base hospital for my follow-up appointment to remove the other drain. I was soo looking forward to being drain-free!! My doctor, Dr. H, called in her fellow doctor, Dr. G, who removed the first drain so he could give his opinion if my healing was going well and if I looked better or worse since Friday. After showing them the incision site, swelling, bruising and talking about pains I've been having, they started talking about some options. When Dr. G asked when I last ate and drank anything, that really caught me off guard! Really?? Surgery right now?? Yep.

My friend Carol drove my car to her home and I stayed at the doctors office waiting for paper work to be completed, then Dr. G walked me to the operating room to get gowned up and ready for surgery. I'm so glad I'm comfortable in hospitals ... it helps that I joke around so it makes me and the people working on me less nervous. I enjoy making the staff laugh ... once in a while I get a super serious-no-sense-of-humor type, but thankfully yesterday everyone was cool. The anesthesiologist even let me drug myself via the IV! Haha That was funny ... its amazing how strong those drugs are and how fast they work. Within 90 seconds, I was out. I knew I didn't have long to finish my story ... and I don't know if I got it finished or not. Haha

Praise God the surgery went well. It was an emergency/exploratory operation and they weren't sure if it would even be beneficial, but thankfully Dr. G strongly suggested it because it was very beneficial. They reopened about 5 inches of the incision and they washed out everything and cleaned it up and much to their suspicion, they found and removed a blood clot that was causing all the issues - a little smaller than a baseball, Dr. H said. She wants to keep me in the hospital until possibly Friday to make sure my blood counts are getting better.

Robert was shocked when I told him I wouldn't be coming home because I was having emergency surgery (I was shocked too!) He made the drive up and got to my room around 1:00am so I was nice and shared my hospital bed with him. It's a good thing we're both small. :) He left around noon to take care of some things at home and pick up something from the pharmacy for Mia, and is taking Mercedes trick or treating with some neighbors, but will be coming back around midnight again.

I'm bummed I'm missing out on the girls getting dressed up. It was crazy hair/hat day at school today, too, so I missed out on that as well. :( I hear Mercedes liked how my Mom made her hair crazy. :)

Last Sunday, we went to CRC for their annual Halloween Parade. It was great seeing everyone again and seeing some families who also have taken their kids home. :) I ran into an old neighbor from the apartment as he was walking by, so it was nice catching up with him - and seeing his beautiful chocolate lab. I finally got my dog fix. :) I miss my Lila. :( I was telling him it's been weird not having a dog for this recovery ... cats are definitely not the same. Haha Anyway, the girls enjoyed the parade and they were both beautiful Tinker Bells! Everyone couldn't believe how good Mia looks and how much she's grown already. :)

That's about it... it's been a crazy 24 hours! :) My main goal for the appointment yesterday was to get the drain out.. and I end up having surgery and come out with two new drains. Haha Oh well. I can't win all the time!

Rachael

Mia heading to bed...

I was walking down the hallway when I saw Mia going to her bedroom looking over her daddy's shoulder. It was too cute - especially with her messy pigtails bouncing around!

We're home!!

Mia's first time in a car - on her way home!

Well, it finally happened! As of August 28th, Mia is living at home with us!! I won't bore you with all the drama we had with the insurance company and supply vendors trying to make it happen, but, even though it was delayed 3 weeks, everything is now working out and she is HOME!!

Renee, Mia, me, Carol, Mom & Aunt Karen

My sister, Renee, has always had the dream to live in Nashville - and it was finally becoming reality after 20 years! She works at Starbucks and we decided to surprise her on her last shift in her California store by bringing Mia in for a visit. =) It went over VERY well and Renee was very excited to have Mia visit her for the very first time! It's a lot of work getting Mia and ALL her equipment in the car and placing everything so the nurse has access to anything she may need in an emergency. It took us about 40 minutes to get Mia loaded in the car at home, and thankfully only about 15 minutes getting her back in the car after the Starbucks visit. =)

The Irvin Cortez family

We had her Homecoming Party planned for a while before any of the drama happened, so we were hoping to have a month to get into the swing of things before the party... Nope. We had 5 days instead. But it all worked out beautifully! Mia LOVED all the company and she stayed awake the entire time! She loved it - especially having her cousins and other children around. :)



About 2 weeks after being home in Gilroy, Mia had her first appointment with our fabulous Pediatrician in Los Gatos (she is Mercedes' doctor and I'd rather make the 30 minute drive to Los Gatos than switching! She is WONDERFUL!) Mia LOVED the bright colors of the paintings on the walls and she just had a fun time looking around. Dr. Pitts-Davis was happy to finally meet Mia after hearing about her and seeing pictures for the past 3 years since Mercedes has been her patient. Little did we ALL know that Mia would make their work load so much heavier - even when we're not there!! They've bent over backwards trying to figure out what exactly we need and how to get it, etc. They've never quite had a patient like Mia before - and we've never had to deal with this side of things - everything was always just 'taken care of' at CRC. It's a learning experience (a.k.a nightmare) for all of us. haha Thankfully once we figure out all this beginning stuff and get it set up, we won't have to deal with it for a while - so that's a blessing!! Usually we don't get a whole lot of great feedback from doctors or nurses about Mia - which I usually ignore because they don't know her. They just go off of facial expressions or responses - which she is unable to make facial expressions and her responses are getting better, but are still delayed. One thing I loved what Mia's doctor said was, after assessing her for about 10 minutes or so and talking to me and getting to know Mia and knowing her history and such, she interuppted me and said "you know, she doesn't miss a THING! She is ALL there - there's no doubt about it!" I got so excited because she agrees with me!! I've always known Mia is very smart and is 'all there'! She gets frustrated, though, because her body doesn't do what her brain is telling it to do - BUT she has improved DRASTICALLY already in her short little 3 1/2 years of fighting. =) Mia is incredible. I love to see what God is doing in her life and development!

Mercedes is loving life in Gilroy - and having her own bedroom again. She doesn't remember living in Las Vegas at all - she does remember when we'd be at our house in Sacramento for the week out of the month for the 9 months or so Robert worked there at Sac State, but living in the dining room at the apartment is basically all she knows. She's so excited she doesn't hear the dishwasher from her bed and that she has a window!! When we'd ask if she could have ANYTHING she wanted in her room, the first thing she always said was that she couldn't wait to have a window! So sweet. =) Just before we moved in the house in early July, we ordered a bunch of stuff online so it'd be there when we moved in, or just afterwards. One thing that was waiting for us in the garage when we moved in was her bunk bed that she'd been wanting. She was very happy to be sleeping on a twin bed, though she was still perfectly content sleeping on her toddler bed.

Willow enjoys doing homework too. haha

Walking to school

Mercedes is loving being in 1st Grade at a near-by school and has made so many friends in her class and in the other 1st Grade classes. She amazes us with her reading, though she complains and turns into a 'wet noodle' when she doesn't want to do homework, but would rather be with "Mia" (we really know she just wants to watch Netflix on Mia's iPad with Mia!) Once she changes her mindset, she does her homework super well and quickly! =) Ever since she was about 2 1/2 or 3 years old, I'd always get her school work books just to keep her busy and so she can learn. Of course, it started out with Pre-K books which is mostly coloring, but she'd whip through the books so fast! Now she's working on her 2nd Grade books just for fun and she goes to sleep doing "school" and the first thing she wants to do when she wakes up is continue doing "school". =)

Ever since Mercedes was about 3 1/2 years old, she's been saying she's going to be a doctor. A few weekends ago (we don't have nursing on Saturdays and Sundays at the moment so all 48 - somtimes 56 - hours are between Robert and myself) I was in the kitchen getting Mia's formula ready and I knew Robert had been taking a nap, but I heard the suction machine turn on. I thought that Robert just took a short snooze and he was back with Mia. Well, I go into Mia's bedroom and there's Mercedes rinsing the olive tip (what you suction Mia's mouth and nose with) in the water and I'm just smiling at her. She turns to me and casually, but like she's such big stuff, said "Mia needed to get suctioned. So I suctioned her." I tried not to laugh because it was so cute! She continued with, "...what!? If I'm gonna be a doctor, I need to practice!!" I told her that I completely agreed with that statement! =) haha

Family time in the living room

Daddy trying to get Mia to stand

We've been doing pretty well - still trying to continually recover from daily exhaustion, but God's been giving us the strength and energy we need to get through! My sister and I were texting a few weeks ago and she was just saying how she knows it's God who is giving me the strength since for the first 6 weeks I'd be lucky if I got 4 hours of sleep a day, but that I do remind her of Wonder Woman. lol She's so silly. There's no way to explain how in the world you can function when you bring home a child with this amount of care required 24/7. It's such a huge change from just 'visiting' while they're in the hospital because the care is being done regardless if you're the one doing it or not. When you come home, and if you don't have nurses for all the shifts (which we didn't for the first 4 weeks), it is beyond exhausting. We are so grateful for the 3 main nurses -  Carolyn, Melody and Paula -  and for Peggy, our temporary night nurse we have for a month. It was wonderful being able to sleep in bed for at least 4 1/2 hours during the night knowing Mia was being well taken care of for those 3 - 4 nights a week. Robert has been a huge help on weekends, and we sleep on the floor in Mia's room so if she alarms, or if she needs suctioning, or anything, we're right there and between the two of us, one of us will wake up!

Morning snuggles before school

Mia is loving being home - and is thriving! She's so much happier and Mercedes loves having her sissie home - at last!







Now that we're home, I really don't have an excuse to not update the blog more often. I will try my best to remember! (That'll be the tricky part because my memory is not very dependable these days... haha)

Keep us in your prayers - especially the girls with these colder months approaching. Mercedes shared her cold with Mia a few weeks ago, and thankfully it didn't land in her chest, but she is still getting over all the head congestion. She ended up with a double ear infection, too. =(

Blessed,
Rachael

On our way to church

Pumpkins from Pops

Cuddling with Papa at Great Grandma Marion's birthday party in Belmont (Mia's furthest road trip yet!)

Nurse Melody loves playing "Beauty Parlor" on Mia

GO BUSTER POSEY!!! He had just hit his grand slam which ended up winning the series!!! GO GIANTS!

Back to CRC!

Well, after 5 days in the PICU, Mia is back at CRC. The PICU is always wonderful because it's so quiet and the staff knows her so well after her many visits since her first stay on July 4, 2009. It's always nice, in a way, going back because the staff is like family that we don't see very often. We love the nurses at the Good Samaritan PICU!

Mia is doing a lot better, especially since Sunday and Monday. She had, what we're referring to as a, trach infection which is why her lungs were clear - her lungs weren't the issue. Her co2 is perfect ... still on high flow oxygen at CRC requiring 35%. The respiratory therapists at CRC are awesome and we have Jan today, so I feel really good knowing Jan will do her thing and stay on top of Mia's care. :)

The doctor put Mia on some water retention medicines so she has lost some weight. Hopefully they will readjust her dose or even discontinue the meds soon. Her eyes are all sunken in. :(

Mia is sleeping currently ... knocked out after getting her skin assessment, weighed and bathed. The noise and hums of the equipment must be soothing to her. :) A PICU RT referred to the ventilator as the 'Prius' of ventilators because it literally is silent! The CRC vent has a nice hum and you can hear when it breathes for Mia. The PICU is pretty quiet which is drastically different than CRC! ....which may be why she couldn't sleep. :)

So grateful Mia's doing much better. :) Thank you for joining us in prayer!

Rachael

Picture is from the ambulance ride over. :)

Mia's magical shoes

Yesterday Mia had a rough day - just in a much different way than the 3 previous days. Her ventilator settings were slowly coming down and her co2 was much better, and she wasn't requiring as much oxygen which is always nice. She has some sort of respiratory bug and is being treated by an inhaled antibiotic. Today her secretions are much better and less from trach, nose and mouth.

The main issue with Mia was she was so tired, but was fighting her sleep. She had been awake since 6:45am and the entire time I was with her, she had taken serveral naps, but, combined, it was only about an hour. She had her legs flailing which made us have to tape pillows to the sides of the crib to protect herself from further bruising her poor little feet. When pm shift came on at 3pm, I told her nurse Dennis that I'm not one to drug my child, but that I really felt she needed something to make her rest. He said that he agreed and that if she wasn't asleep by the time he came back from break at 8pm, he'd give her a dose of Adivan. I called at ten to see if she had fallen asleep yet and he said that even though he gave her the med at 8, she was still fighting ... she wanted to stay awake. I don't know what she thought she was going to miss out on!! Haha My poor honey.

I called noc shift this morning to see how she did (if she slept!) and the nurse said she finally fell asleep at midnight and woke up at 6am. Only 6 hours of sleep for an exhausted 3 year old? Not so good!

She hasn't been as restless today, but still... she's been awake since 6am and it's now 4:30pm and she's only slept about 2 hours total. She was asleep when her Nana and Pops came to visit and woke up when her other visitor was here. :)

Dennis and I were talking about how bruised up Mia's right foot is from banging it on the crib, and how the soles of her feet are all red from clapping them together all the time, so I decided I would put her socks and shoes on ....

Her shoes are magic!!! As soon as I put them on, she fell asleep and has been asleep for about an hour! Haha So glad she's finally getting rest.  :)

Dr. Silva and the on-call doctor, Dr. DiCarlo, both say Mia's ready to go back to CRC, so if nothing changes over night, we'll head back there tomorrow. :) It's always nice coming to the PICU at Good Samaritan Hospital when Mia needs extra care... we love the staff here and they all love Mia so much which is just as important! :) This is Mia's 5th or 6th visit since she was just 5 months old, so the staff has seen her grow up and develop over her 3 years! :)

Yes, Mercedes is excited!!

Yesterday Mercedes drew this picture and put it on the refrigerator and showed it to me when I got back from the PICU ......

For about 2 years, Cedes has been saying that when Mia comes home, she wants to share a room with Mia and get bunk beds - Mercedes gets the top and Mia gets the bottom. :)

Now that we're moving to a house and Mia is coming home, she is still sticking to her plan! She's determined to get a bunk bed and have Mia sleep in her room on the bottom bunk. :)  Such a sweet dream. I'm sure it'll be a reality at least for maybe an hour or so to start out with!

Enjoy her drawing. :)

Cant wait for life to slow down!

Robert and I celebrated our 7th wedding anniversary the end of last month and it was a really nice day! He basically planned it all... my contribution was taking Robert to his very first SF Giants game! It was great spending time together ... and the Giants won, so that was great, too! We had a great lunch at a Thai restaurant in Sausalito, then we went to where he proposed ... he's much more romantic than I am. I'm too practical, which isn't always a good thing! Haha

We finally moved out of the apartment... that was an adventure! We thought we hardly had anything left to pack, and yet it still took FOURTEEN stinkin hours!!! So grateful to have my parents help for a few hours, and that Robert was able to come home a few hours earlier which really helped speed things up! So glad that my brother was so kind and helped load stuff in his van to take over to my parents home, where we are temporarily staying until we move into our new home.

Life back at home with my parents has been a blessing, but so chaotic since they are packing as well for their move with us, and my sister is packing for her move to Nashville! Talk about having boxes everywhere! :)

One great thing was my brother and sis in law celebrated their birthdays by going to a Giants game. About 20+ of us friends went and had a great time ... especially since it was the first perfect game in SF Giants franchise history! Matt Cain was incredible ... as well as Panda, Melky, Buster and a few other guys who made the 10-0 game awesome!! So glad Mercedes and I could be at that game!! :)

We were able to keep our vacation plans that were made a year ago to go to Lake Tahoe for a week with Robert's parents, his sister and her family, and his Dad's brother and his family. It was so relaxing and nice not have ANYTHING on our agenda but to go to the dock or to the pool or go for a walk!!! I think I may have appeared to be lazy to Robert's family to still being in bed while everyone else was having breakfast and getting ready for the day, but as far as I was concerned, I was exhausted and I needed sleep!! Haha I was, after all, on vacation! :)

We did take a nice drive to Angora Lake ... and it was a hike from the parking to the lake! I was a little emotional watching the kids play in the water, especially our little niece Emma. She's 9 months younger than Mia, so it was tough seeing her play and laugh and talking up a storm and just being herself, since Mia's never done any of that. I'm hopeful she will eventually, but it's still hard. :) I think Uncle Dave saw that I was much more serious than usual, so he got Robert and I and we climbed the rocks and everything to try to get to the other side of the lake... I'll tell you what... trying to climb in jeans is no easy task! Haha It was a lot of fun and it was nice spending time with Uncle Dave and Robert talking as we were going from rock to rock. :)

The week away was so nice. I've only ever been to Tahoe for our honeymoon and 3 other times (when Mercedes was 3 weeks old; a year old; and 2 years old) and we never really got to do too much any of those times. This time with Mercedes being almost 6, it was so much nicer not having to deal with naps or strollers, etc and just really enjoy the lake and the mountains. Lake Tahoe is definitely one of my favorite places. I never knew I liked the mountains that much! :)

Ever since Mia's visit to the PICU for the EEG last month, she hasn't quite been her usual self. Everything kind of escalated while we were in Tahoe so that was a little stressful being so far away and with cell phone coverage was a little sketchy. I wasn't sure if she was actually sick, or a little depressed because we weren't there or what. One day, she had fevers; another day she was needing 4 liters of oxygen; another day they went up on vent settings; another day she got a chest xray... rough week.

On our way home from Tahoe as we were almost to Tracy, CA (approx. 90 minutes away), I got a call from Mia's nurse saying that Mia was just not doing well at all and that they were sending her out to the Good Samaritan Hospital PICU. She read the very long list of notes and things they did to try to get Mia stable, but she just wasn't stabilizing. Thankfully, it kind of took a while to get her out the door and to the PICU, so we got to her bedside only about 10 minutes after she arrived.

Sunday afternoon and evening, she was doing alright ... acting totally fine, but her ventilator and oxygen requirements were really high... crazy high. Her co2 was pretty high as well, and normally when she's that high, she would be totally out of it, swollen, just looking bad. She wasn't like that this time, which was really odd.

Yesterday I was with her for about 9 hours and during the late morning part, I was getting nervous. I usually am pretty calm since I'm so used to all of this, but with Mia needing 70% oxygen and her co2 being in the 70s-90s, I was getting worried. She's already trached. She's already on a ventilator. She's already on a LOT of oxygen. I asked if they could get a co2 reading from an ABG (blood gas) just to get a baseline because the co2 monitor was currently reading 82. We were hoping the monitor wasn't accurate amd just reading way too high, but the blood gas showed 95!! Even worse than the monitor! They increased some more vent settings to try to get Mia stabilized, but not too much was changing.

We left for my parents home around 8pm, and when I called around 10pm, her nurse Dennis said her co2 was coming down as well as some vent settings and o2 requirements. Praise God!! When Robert called the nurse around 6:30am, she said Mia slept most of the night and came down a little more on settings and o2. But around 5am, nurse Heather had to give Mia Adivan because Mia was having a melt down and would not calm down! She's been sleeping ever since. :) She wakes up every once in a while, but she's pretty drowsy still, which is fine. She needs to rest and it was a good call to give her that antianxiety medicine. Her co2, o2, and settings are all pretty good right now... :::sigh:::

I'll try to be better about updating the blog. :)

Rachael

Where's Mittens??

Packing up the last of our belongings with the help of my parents. Gotta be out of the apartment today! Mixed emotions...

I have another update to write... if only I had more time!

Rachael

Life is slowing down...

As soon as we got back from our vacation during Mercedes' spring break, life has been non stop... chaos, really. We've been on the go non stop and FINALLY, life is slowing down!!

So far the initial move is going well. The Pod got picked up on Saturday and we will see all of our stuff in Gilroy in early July. We will be moving out of the apartment on Thursday and will move in with my parents and sister for about 5 weeks until we get the keys to the new house.

Mercedes' last day of school is June 7th so I will only have to drive her to school for 5 days ... not too bad. :) Since I'll be living with my parents, I'll be able to continue helping them sort through things and get more organized for their move when they join us in Gilroy at the end of July.

I'm also excited life is slowing down because I'll finally make it to the gym again!! Ever since running the 10K in Santa Cruz on April 1st, I've been to the gym once. I feel so crummy and blah. It's going to be nice to feel energized again. :)

Mia is doing better. The EEG didn't show any signs of seizures during those combined 40 hours of the tests. They're just Mia Moodiness. :) Of course there is the exception when she actually does appear to be having a seizure... but those are pretty rare and far between. She seems to still be getting over a cold but all things considered, she's pretty stable. :)

Happy Memorial Day.

Rachael

What an absolutely crazy day!

I am so exhausted. We all are!

Mia is doing better... they were able to complete the entire 24 hours and there wasn't any seizure activity noted. That's good... but boy when she is mad, she is mad!! They almost kept her another night because, as nurse Cindy put it, Mia didn't quite recover from her temper tantrum that she threw during bath time and trach tie change. It was bad enough she had to go on 100% oxygen for a couple of hours, got a stat chest xray, had blood coming from her mouth we assume from biting her tongue or inner cheek... she went all out this time! The xray showed something, but wasn't totally alarming and she finally calmed down after about 3 hours.

She is just now at CRC (this is the first time I'm not with her when she gets transported!) and I will call in a few minutes to see how she's doing.

Today has been especially busy with the moving sale in the morning and also packing and loading the pod from 4:00pm until just about 10:15. We're so grateful for our moms who helped and my brother who helped Robert load and secure everything. We're about 85% done but we are out of boxes and storage bins. Darn. The pod gets picked up in the morning and we also have another moving sale to do at my parents... and Mercedes' soccer game at 10:00am!! Aaahhhh!! We'll get it all done somehow ... :)

I am so tired ...

Goodnight!

Mia is playing dress up again!

The doctor came in to fill us in on how the study went. He didn't see even a single spike, so he personally feels that what she does is simply because she is mad. It makes sense to me - that's what I've been leaning towards anyway, but you never can be completely sure on a child who doesn't have the capabilities to make facial expressions, cry or scream. (Or smile, or laugh, and so on...)

I've been saying that Mia missed the memo on the 'terrible twos' and now she's making up for it by being a trouble-making 3 year old. Haha :)

The doctor says he would bet that they're not seizures and that she's just showing that she's upset, but if we'd like, we can do another 24 hour EEG. Robert and I feel we may as well do it again since Mia is already here. The doctor also said to try to encourage what she does - do what gets her mad just to catch it on the computer and video so we can rule it out. We'll see!

So, Mia is back to being Lazarus and Rapunzel. :) We should be back at CRC by around 5pm tomorrow ... hopefully.

Mia has had her spells of moodiness (of course while the camera was off!) and I guess her tummy didn't quite like the formula they had at the hospital. She threw up a little bit after her 8am feed, so she skipped lunch. (She got PediaLyte instead.) The dietician came and asked if we would be able to bring Mia's normal feedings, so I was able to pick up her bottles of formula from CRC in time for her 4pm feed. I'm sure her tummy appreciates it!

That's all the news for now...

Rachael

Day 2 at Good Sam PICU

Mia had a pretty good night. Took a 3 hour snooze, then was awake the rest of the night. I'm sure she's claiming she didn't know what time of day it was due to not having any windows in the PICU. ;) She's currently wide awake watching Winnie The Pooh again. If you haven't guessed, that the only full-length movie she has on the iPad. :)

It's really cute, though... when she first watched it on the iPad about a month ago, she kept touching the screen like she does with her apps thinking it was a game. She has now figured out that it isn't a game and that it is just something to watch. She now enjoys watching a few free TV kid show episodes that I had downloaded for Mercedes a couple years ago - Blue's Clues, Super Why!, The Backyardigans, etc... :)

It really excites me to see this kind of comprehension she is showing ... :) I've always known she's very smart and just struggles with getting her body to do what she wants it to... this kind of communication is really fun to see!

Apparently the EEG got interrupted at approximately 16 hours into the study, so Mia's dress up party is over - she is no longer Lazarus or Rapunzel.  :) She's back to being her beautiful perfect self! We're still waiting to hear from the tech or doctor to see if they got enough information for what they need, or if Mia will need to stay longer.

Mia seems to be really irritated from being on her back so much.  Well, just being stuck in the crib, basically. I can see that she would rather be on the floor rolling around, but that's not possible here. Now would actually be a great time for the EEG since she's mad! She was too happy at first with the change of scenery during the test, but it looks like that has come to an end.

I'll keep the blog updated when I can. (Thank goodness for the app on my phone!)

Rachael

Pictures included are from Mia getting the probes on her head; the computer and camera; video on screen; Mia sitting up this morning in the dark; laying on her side trying to get comfortable

**the app scrambled up the order of pictures... sorry. :)**

Not too much to report...

Just thought I'd give an update before I get some sleep...

Boy am I grateful to my family!! My sis Renee stopped in to see Mia before she and I headed to get some drinks from Starbucks and heading to my place to start packing. Sigh... Iced chai tea latte was a great pick me up!!

Soon after we began to pack, my brother came to help, as well as bringing a delicious dinner my sis in law made. Mmmmm... It was so good!! Thank you, Jen!! My mom also came, too, so between the 4 of us (mostly them) majority of the kitchen got packed! The kitchen is the most time consuming of the packing experience, too, so great progress was made tonight! My brother also packed up my DVDs ... Yeah, I didn't realize I had that many. Haha I never knew I had a 'sickness'! lol I'm sure I'll eventually part with some, but... :) I don't even have TIME to watch movies anyway, but oh well. Packed they got! Thanks, Beau. :)

Robert stayed with Mia at the PICU until around 8:00, then picked up Mercedes who was with Auntie Jen and her three Cortez cousins, I'm sure having a blast. :)

I just called the nurse and she says Mia is doing really well and they just lowered her oxygen to 35%, so that's good. She also said that Mia is very much aware that something is on her head and she keeps grabbing at it. The nurse said that Mia is just too cute, and she is definitely right!!

So far no seizure activity. It's hard, though, because she's not in her usual surroundings (CRC is much more active... she's not having to be mad about sitting in her wheelchair... etc...) so I'm actually not surprised that Mia has been calm. :)

Keep praying!

Oh, and there was a misunderstanding.... The Pod unit gets delivered Friday, not tomorrow, so we have an extra day to pack. Whew!!! :)

Goodnight. :)

**CONGRATULATIONS PHILLIP PHILLIPS!! :) He has been a favorite since his audition! He and Colton are great! :)

Okay... enough American Idol .... until next January!**

Timing is everything....

I was in the process of writing a blog yesterday morning and things just got so chaotic with Mia; packing; picking up and dropping off furniture; running errands, etc... and I never got around to posting it.

When Cedes and I had just gotten to school, I checked to see what time it was (to see how many minutes she had to play before the bell rang) and noticed I had a missed call from the CRC charge nurse. Instead of listening to the voice mail, I just called her back and got the info... long story short, Mia still wasn't herself and it looked like she was having a seizure, so they called the doctor and he ordered Ativan (antianxiety med) and she calmed down... but she still wasn't herself. We kept her from school and she mostly stayed in bed.

After the crazy day was winding down, I stopped by to be with her for a little bit before going home to finally pack and she looked really good. She was giving me lots of kisses and playing peek a boo with me. It was fun to see her having fun again. :)

Today, she still wasn't quite herself, but seemed well enough to go to school, so I wheeled her down the hall, grabbed her laundry, ran an errand, started 3 loads of laundry, made myself a very yummy breakfast, then began packing. Finally. The Pod unit is coming tomorrow so we can load up everything to be picked up on Friday, so today was my Packing Day! It had to be ... it's the only option.

I got one box packed when the timer went off ... time to put the clothes in the dryer! As soon as I walk back in the apartment, my phone rings and I figured it was a CRC number, though it wasn't in my contacts list. I answer and it's Dr. Silva. He's never called me himself before. I was definitely caught by surprise, so I didn't even have time to guess what the call was about. He felt, since Mia was still acting a little strangely, a 24 hour EEG would be beneficial and wanted to know if he had my permission to do that. I completely agreed, only my thought was 'Seriously??? Today??? Right now??' With my permission granted, they were going to set up transport from CRC to the Good Samaritan PICU to do the test. I called Robert to let him know what was going on and asking if he could please come home in time to pick up Mercedes from school. He said he would do that (and also get the clothes from the dryers!). Then I let my mom know what was going on... at that point I was almost on the verge of tears because I was so stressed out because I have sooo much to do and get done, but I obviously need to be with Mia during this time! My sweet mother told me to tell Robert not to worry about Cedes that she will pick her up and keep her until evening. What a huge help!

Within a half hour of Dr. Silva's call, AMR was at CRC to transport Mia to Good Sam and now we're in the PICU. One of our favorite PICU nurses is working today, so that's extra nice! She's gotten blood draws, she's all hooked up to the EEG (she looks like a cross of Lazarus and Rapunzel. Haha) She is also getting another chest xray as I text...

Keep praying for us and Mia.  We are supposed to be all packed up by tomorrow and the apartment only looks like a tornado has hit it. My brother and sister will be helping me pack in a few hours while Robert stays with Mia.

I hope some answers come back.... it is so hard not being able to understand how Mia is communicating to us.

Trusting God,
Rachael