Lockdown....

Hi Everybody,

My family should be arriving in about 45 minutes ... and we're very glad to have them back!! =)

CRC has officially been ordered by the staff to have a lockdown to hopefully kill the fever that most of the kids have right now. Mia did have a fever for about an hour yesterday, then it went away - Praise God!! =) The kids can't go to group (for their developmental therapy) and the older kids can't go to school. The kids can't even go out in the hall - they've all been ordered to stay in their rooms until hopefully Sunday so they're well enough for the Christmas party. If the fever is still going around, then they might have to cancel the party. =(

Stanford got in touch with the CRC Social Worker to reschedule Mia's pulmonology apppointment and the only time Dr. Wickoff (sp?) had available for the entire month is for this afternoon at 2:30pm. We were kind of worried yesterday with Mia's fever because if it continued, she wouldn't be able to keep it. But as of this morning, everything is still good to go! =)

Mia's last co2 was 35, so we're happy about that! It was a little high again yesterday, but not too bad. =)

Keep her, and all the kids, in your prayers!

Merry Christmas!

Rachael <3

Well enough to travel!

Well, Mia was indeed well enough to keep her appointment to go to the pulmonology appointment at Stanford. It's crazy amount of work to get her vent and everything that goes along with it portable... and then of course we have to go by ambulance, so that has to be set up in advance... everything went sooo smoothly today!!

Unfortunately, when I was checking Mia in at the clinic, they informed me that the scheduler had made an error and somehow canceled Mia's appointment. The doctor who we went up to see was seeing patients at the South Bascom Avenue clinic. CRC is ON South Bascom!!!! It's seriously like 1/4 mile down the road. The on-call pulmonologist wasn't even there because he was giving a seminar that all of the other pulmonologists were at! They said that if we would like to wait around, a doctor should be there around 1:30am (two hours later). Mia didn't have a feeding with her, she couldn't very well miss two feedings just to make up for somebody's mistake. Dr. Silva (Mia's doc at CRC) was going to be driving up for the meeting as well, so thankfully he hadn't gotten there yet. Jay, the RT who was with at the at appointment, called Dr. Silva to see what he wanted us to do, so he told us just to go back to CRC.

Hopefully we'll be able to get another appointment somewhat soon! This appointment had been scheduled for two months as it was - hopefully they'll get us in sooner than that!

I'm sure Mia enjoyed getting out of the building and going outside, although it was freezing!! It was probably in the low to mid 40's, but she was bundled up all nice and cozyish. I wish I had taken a picture. She looked so cute wearing Mercedes' "old" winter cap! =)

Jay (the head RT at CRC) has been working super hard figuring out how to keep Mia's c02 down... and it seems to be working!! It's been ranging from the upper 20's to 40 all day... so we're happy! =)

My family was supposed to get on the train to head back to San Jose this afternoon, but 15 miles before the train got to the station, a (drunk?) person ended up on the tracks and ended up being killed. =( So, the train was delayed for who knows how long, so they decided just to stay an extra night with our relatives. So, they should be arriving Friday morning now! Pray for the person's family - whoever that person was, he/she must have had friends and family.

Hope you are staying warm!! I know the west coast has been hit hard with this crazy freezing storm!! Definitely not the norm for San Jose to have so much frost everywhere that it looks like it snowed! It's pretty though!! But I sure am FREEZING!!! I can't wait for Dad to come home so he can FINALLY turn on the heater!!! HURRY HOME, POPS!!! haha =)

Merry Christmas!! =)

Rachael

A little more stable...

These aren't the clearest pictures, but it gives you somewhat of an idea of what they did to Mia. In real life, it's pretty funny to see just how angled she is!! The pictures don't show that too well.

The position seemed to work (as well as making her exercise! Check her legs out! haha) Her co2 was down to 30, 32 and 28! Although, we're not too sure why, but then at 9:30pm, it climbed back up to the mid 50's. Right now at 7:30am, it's between 47-57. They are doing the Trandelenberg position every 4 hours, 20 minutes per side. The RT is doing that right now to see if her co2 will come back down.

Yesterday, Mia did get the 'OK' to go to Stanford for her appointment, so we'll see if that still holds true this morning. If so, the ambulance arrives at CRC at 10:30am.

Thank you for continuing to pray for Mia and all of the staff and us! =)

Thinking outside the box

I called CRC this morning to see how Mia was doing. The first co2 reading was 49. I called two hours later and talked to the charge nurse. She said around 9am, Mia's co2 was 67. Brandon, one of my favorite RT's, decided to think outside the box... he elevated the foot of Mia's bed so she was more or less upside down and he turned her to one side. He suctioned her trach, then he turned her over to the other side and suctioned again. What he's doing is draining her lungs! Her co2 is now at 30 and 32!!! Praise the Lord!! =) That was about an hour ago, so we'll see if that's the trick to getting her better.

Mia has had an appointment to see a Pulmonologist at Stanford and it's scheduled for tomorrow. I'm not sure if she'll be stable enough to go by ambulance to the appointment, but we'll find out more tomorrow.

On totally different topic, here's a video of the changes we've made to our Vegas house throughout the years.



I'll keep you updated as much as possible.

Keep praying!

Rachael

Rough weekend...

Hi Everybody,

It's been a rough weekend for Mia. On Friday afternoon, Mercedes and I left to spend time with Robert in Sacramento for the weekend. Around 9:00pm Friday night, I got a call from Mia's nurse telling me what had happened around 7:30pm. Mia's co2 was fluctuating from 69-80 (should be less than 50). She also had another seizure that lasted 2 minutes. It killed me that my baby was going through so much and I was 2 1/2 hours away from her!

So far, she only had that one confirmed seizure, but her co2 has been very challenging to stabilize. She normally has Albuterol treatments every 8 hours, then they changed it to every 6. Now it's every 4 hours. They've maxed out her vent settings (they can't really go any higher on the settings). She is requiring 1 liter of oxygen (that's 25%). Room air is 21%.

Dr. Silva, the RT's, the nurse practitioner, and the nurses, aren't exactly sure what's going on. They took a chest xray this morning and that came back fine. They did take some blood to test for something - not sure what, and last I heard, they hadn't gotten the results yet.

It doesn't make sense that it's anything respiratory, so they're thinking maybe it neurological or seizure related. They think she may be having a lot of really small seizures, so they started another anti-seizure medicine. Mia does seem to have a slight cold, so she is coughing a lot and they're suctioning a LOT of secretions out from her trach. She hasn't had a fever at all.

One RT thinks Mia MAY be allergic to the Albuterol. I think she was going to mention that to the doctor, so we'll see what happens.

Please be praying for Mia and the rest of our family. Mercedes and I came back down to San Jose this afternoon, so I was able to be with Mia for about 3 hours. She was a little restless what I first got there, but I just hugged her and kissed her and layed my head next to hers in her bed and she went right to sleep.

On a cute note, check out her top teeth in the picture from tonight!! Too cute, right? =)

Keep praying!

Rachael

We survived!!

November was absolutely CRAZY!!! Great, but crazy busy!! The first weekend, Robert and I able to go to FamilyLife's Weekend To Remember weekend marriage retreat! The conference we went to was in beautiful Monterey and Robert and I thoroughly enjoyed the speakers and learning how to better our relationship with each other. =)

The following weekend we moved all of our stuff in our new home in Sacramento!! The week after that, Robert and I went to Vegas for a week to work on the upgrades and work the house needed. Robert did a wonderful job! I helped where I could, but I was mostly the painter for two of the bedrooms and a bathroom and doing the detail stuff. But I did become a pro with the nail gun!! I was freaked out to use it, but it was actually a lot of fun! =) Robert and I were a great team at putting up the trim around all of the windows, if I do say so myself. =)

We were blessed with a renter for the Vegas house!!!!! We are so happy and it was wonderful how God worked it all out! Our former next door neighbor, James, moved from his house during the summer into an apartment, but he realized apartment living is not for him. He worked it out with the leasing office where he's at, and he'll officially start renting our house in February! We already gave him the keys, so he's going to start moving his things over whenever he likes! We're definitely happy! The price we gave him is less than what he's paying, so we're both helping each other out! =) God is good!

We originally thought we'd be done with the house on Wednesday morning, drive out to Sacramento, unload, spend the night there, then head to San Jose to spend time with our family. But, of course, that was not how it happened! We didn't end up leaving Las Vegas until 10:ooam Thanksgiving morning, but we stopped at Sunrise Children's Hospital to give them a Thanksgiving card with pictures of Mia. We were so happy that Blanca was the receptionist that morning! Blanca totally fell in love with Mercedes during Mia's 10 week stay at Sunrise. Everyday, Mercedes would carry around her little photo album of Mia's pictures and she's always show them off! She's tell them all about "Mia Amornay"!

Walking into the the hospital brought back memories, but when I used their hand sanitizer, the smooth silky feel of it brought the memories flooding back. Seeing Blanca totally helped me fight back the tears! We went up to the NICU floor and weren't too sure which Pod to go to, so we just went to the where Mia's very first bed was. We were looking through the window seeing the bed spot where another little baby girl was.... we were looking around for a nurse to give the card to, but we didn't see anybody. We walked over to the double doors, then I see somebody! I got soo excited and I was knocking on the window, then she turned around! It was Patricia! She was the nurse who admitted Mia the day she was born and she was also Mia's first primary nurse. It was a great surprise to be able to catch up with her and tell her how Mia is progressing. I showed her a few videos and such... it totally made my day seeing both Blanca and Patricia. =)

We arrived to San Jose in time to see Mia wide awake on Thanksgiving!! We have this tradition going with all of the Cortez grandkids... on the baby's first Thanksgiving, we get a picture of them wrapped in a particular blanket wearing their "Turkey Feathers"! It was a little more challenging with Mia since she's not holding her head up extremely well, but we made it work! =)

We all woke up not feeling the greatest, so we didn't see Mia all weekend, but we went up to Sacramento to get the house a little bit in order and had a yard sale to get rid of some off the stuff we didn't need anymore. We did sell some, but none of the big stuff! Robert would have GIVEN everything away if I would have let him, but we do need to have some money to replace the furniture we're getting rid of! =) Some things are selling, thanks to CraigsList, but we still have all the big stuff left. Anybody want a 4 piece bedroom set or entertainment center?? ;-)

My parents and Renee went up to Sacramento as well. We met up at my Grandma's house to visit with her. My grandma's so beautiful!! It was great being able to spend time together with extended family. Having Thanksgiving left overs was great, too! Thanks, Aunt Ida! =) Mercedes knew we were going to our new house, so she kept asking when we were leaving because she wanted to see the new house again!! She was SO excited!! My family was able to spend two nights with us and they helped quite a bit with the unpacking and organizing, which was so helpful! Mercedes' and Mia's rooms are now almost totally set up. Just gotta get everything hung up on the walls! =) When it was time to head back to San Jose, Mercedes didn't want to leave. She told my Mom "No, I want to stay at the new house with my Daddy. I don't want to go to San Jose." She put her beloved Buzz Lightyear toy and Woody's hat in a box with her Daddy's tools so she didn't have to leave. =( It totally broke my heart! OF COURSE she wants to stay at her new house with her daddy!! I don't blame her... hopefully soon we'll have a little bit of normalcy.

It's been hard not seeing Mia as often as I'd like! I was gone for an entire week, then I wasn't feeling well for several days so I've only seen her about twice in the last 2 weeks. I miss my baby!! She's doing alright... weaning is proving to be more challenging than they initially expected. She does not tolerate being weaned to 22 bpm. Her Co2 went up again, so they had to raise her settings again. She's now back up to 26 bpm. She's stable now, so they're going to let her stay comfortable where she's at. She's also requiring a little more oxygen than is typical, so pray that she's not getting sick or anything.

One bit of good news is she has her two top teeth now!!! She's such a big girl with her 4 teeth! She likes grinding them which I don't like! haha... such a terrible sound! I had a meeting yesterday regarding Mia's health progress, and she's doing pretty good! The great news is that they are happy that she's interacting more and is much more aware of her surroundings and such. She's made a lot of progress developmentally!

While we were in Vegas, the eye doctor came to evaluate Mia. The wonderful news is that her vision is perfect!!! The doctor called me and answered questions that I had and the one thing he told me that I will never forget was this, "Don't you ever believe anybody when they say she [Mia] can't see. Her vision is perfect!" It seems as though that all of the doctors who have seen her, except for the geneticist, think Mia has Mobius Syndrome.

Mia has an appointment on Wednesday with the Pulmonologist at Stanford, so we'll see how that goes. We just found out this morning that her ear tube surgery has also been scheduled for January 8th, so also be praying for that!

Pray for my parents and sis as they travel to Oregon tomorrow for the week. It's been a planned trip for several weeks, but now they realized that God had them going for a different reason! My Uncle went to be with the Lord this morning, so the memorial service will be on Monday. He had been fighting illness for a few months and my Mom really wanted to visit with her sister and all the family for so long, she decided they should make the trip. Of course she had wanted to visit with him, too, but God had other plans! =) His ways are perfect..... and Uncle Lupe is peaceful now and not suffering any more! =) I'm going to miss my Mexican Santa!! He always scared me when I was little. haha Good memories! =) Pray for the entire Martinez family and especially his wife (my Mom's sister), Janie.

Hope you had a blessed Thanksgiving and are having the beginning of a joyous Christmas!! =)

God bless,
Rachael <3

Mercedes and Mia...

Mercedes' allergy appointment was a little different than I had expected it to be! Instead of being there for about 45 minutes tops, we were there for 3 1/3 HOURS! If any of you know Mercedes at all, you'd know she's always been deathly freaked out of doctors and nurses and anything they do to HER. If the appointment is for anybody else and she's there, she's perfectly fine. Also, when she gets worked up (crying), she usually tosses her cookies.

All that to say that she was SUCH a trooper!!! She did have a fit when the gal was trying to get her temp in her ear, and when the doctor was trying to see in her ears, but other than that, she did great!

That morning, I had to stop by her doctors' office to get the flu vaccine to take to the allergist's so he can inject it - in case of a bad reaction. I didn't realize he was going to retest her for milk, egg, and the flu vaccine to see how strong she's allergic. She was allergic to all three. They also tested her for shellfish and she wasn't allergic to that, so that's good to know! =) I was always scared to give it to her, so I never had. The good news is that last time her egg reaction was about 2-3'' in diameter and this time it was about the size of a time, so it looks like it's cleared up some! Her milk allergy was about the same size, so that's also decreased (according to the size).

Anyway... since she was allergic to the flu vaccine, they had to give it to her in TINY doses, then wait 15 minutes, check her reaction, then give another shot. Thankfully, after the 3rd shot in her shoulder, I agreed that they should double the dose so it'd go faster. She ended up getting 5 shots in her shoulders as well as 9 pokes on her back!!! She did such a great job!! We bought Mia a little media player and we put a bunch of movies on it for her, so Mercedes borrowed "Mia's Laptop", as she calls it. =) Boy, was THAT a good idea!! =)

Today the ENT came to CRC (where Mia is at) to evaluate the children. After looking in Mia's ears, they didn't bother examining her trach or mouth, because she has a lot of fluid in her ears that it requires surgery to place tubes to drain the fluid. =( So, when they do that, since she'll be under anesthesia, they'll examine everything else they wanted to do today, as well as an official hearing test. If they don't do the surgery, there's a very high risk that she can lose her hearing altogether, because there's so much fluid, they said.

I was bummed when I heard that, of course I was sad and disappointed, I guess. It's always hard to hear that your child is going to need to have yet another surgery. When I put her back in bed, her eyes rolled back, her alarm went off - she was desating quickly, and her lips went totally pale. Mia had another short seizure. It only lasted about 90 seconds, but it seemed like forever. Especially when everybody is busy with normal everyday things, and helping with the ENT clinic... I couldn't find an RT to help the Charge Nurse and Nurse Practitioner. They had to bag Mia back up and once she seizure ended, she was fine. It was so strange. I felt so totally helpless and defeated. As a mother, it's so hard not being able to fix whatever is going on in her body. It's even harder not knowing what the problem is to begin with.

Continue to pray for our baby girl! Mia is getting stronger daily and so much more alert, but we know she has SO much farther to go! Also pray for Mercedes' food allergies to clear up. Next week sometime, she needs to get some blood work done (that one definitely will not be fun!) to test for her milk, egg and nut allergies - to see just how strong they are.

I drive up to Sacramento in the morning, then when Robert comes home from work, we'll head out for Las Vegas until the day before Thanksgiving. Pray for travel safety for us and that we can get everything accomplished that we need to!

My Mom has been fighting a really bad cold, so she's not going to be able to see Mia much at all while we'll be gone and my Dad works nights and sleeps during the day, so he won't have much time to visit Mia, either. Robert's parents aren't close enough to come by daily (they could, but it'd be a LONG trip back and forth!) and since Grandparents are the only people allowed to visit at this time (aside from parents), pray Mia will get enough company, love and touch while we're away. Pray that my Mom will get better, too, so she can visit with Mia.

Yesterday, Mom, Mercedes and I were able to meet Danny Gokey (2009 American Idol finalist - Top 3 - totally deserved to win, but he didn't need to!) Our local country station hosted a private concert and signing at Armadillo Willy's, so it was a great honor to meet this wonderful man of God! (www.sophiasheart.org)

Blessings to you all,
Rachael <3