Big changes ...

If anybody still checks the blog, a lot has happened since my last post ... The Happiest Place on Earth! In September, Robert, Mercedes, my parents-in-law, my sister and myself made another trip to Disneyland for my birthday. :) That was so much fun! Mercedes, the little dare devil that she is, went on The Tower of Terror! I had agreed that I would only go on it if Mercedes did, thinking that she wouldn't. Yeah, that backfired on me! Haha It was a fun ride.... once I got used to the idea. :) At my best friend's wedding in mid October Mia a.k.a. Minnie Mouse and Mecedes a.k.a. Figaro for the Halloween Parade at CRC In October I had a major hernia repair. The hernia itself wasn't bad, but the doctor pinned mesh (about the size of a dinner plate) to my abdominal wall. That is the most pain I hope to ever be in again ... thankfully I recovered well (3 months) and it only occasionally hurts, but thank God, I'm okay now! Photographers came to CRC and took family pictures of the patients in November Sitting up with Daddy's help in the hospital crib in the PICU. Feeling so much better already! On Thanksgiving around 4am, I received a call saying Mia wasn't doing well and she was going to be rushed to the PICU, where she stayed for about 5 days. It seemed like it was another UTI she was dealing with, but she wasn't stabilizing on the vent for a day or two. Beautiful Meesters in the PICU, feeling better, after a bath Christmas picture 2011 Mia's first time home on the 4 hour pass 2 days before Christmas! Beautiful sisters In December, I was so sick of being 'stuck' at CRC and I didn't want to spend another family Christmas at the hospital, so I talked with the staff to see what it would take to take Mia home for 4 hour passes. Long story short, Robert and I both finished our training and brought Mia home for the first time (just us and our girls) on December 23rd. :) God granted the desire of my heart and we had our first quiet Christmas at home with Mercedes and Mia. :) We've brought Mia home almost every weekend since then with the exceptions of us being out of town; if it was raining; or if any of us were sick. Mia loves being home! It's so relaxing to be out of the facility. Mia turns her head to line up her lips exactly where mine are - so cute!! I love her kisses. One of my favorite things Mia has started doing is giving and receiving kisses!!! It's so adorable!! Mia is really interacting more. It's so neat to see her play on her iPad. We're so proud of her. :) On January 1st, Robert talked about the possibility of buying a condo next door to CRC, so we worked with a Realtor and there were several options to finally get out of the 1 bedroom 600 sq ft apartment we've been in for 2 years. Next door would have been ideal because we would be able to bring Mia home as often as everyday if we wanted, but it just never worked out. First day at school! Everyone loved the "new girl" Kindergarten field trip to a local farm 2 weeks ago Ever since Mia's hospitalization on Thanksgiving, it threw off our homeschooling schedule with Mercedes and my stress load got ridiculously high. My perfectionist tendencies didn't make things any better. I wanted to do everything myself ... my patience level was very low with Robert and Mercedes so Robert had an idea to talk with the school across the street from us and they happened to have a spot available. Mercedes started her first day of Kindergarten at Farnham Elementary School on January 11th and she's doing so well! She loves Ms. Davis and the class loves Mercedes.  :) My stress level has decreased and it's been nice to be able to spend time with Mia and I can finally be with her when the therapists see her, etc. Papa holding the Birthday Girl - and showing her the balloons Tasting her birthday cake! Mia's teacher - I'm very proud to report that Mia stays awake most of the time at school! In February, Mia celebrated her 3rd birthday at home with friends and family. :) It was a lovely party and she loved it! All the girl cousins got their nails done and they got all dolled up! The Monday following Mia's birthday, she started preschool onsite at CRC. In the mornings, I drop off Cedes at school, then cross the street, go to CRC and finish getting Mia ready, then take Mia to school.  Then I have my time from 8:45-10:15, then I go back to CRC to spend time with Mia. I still don't get everything done that's on my to do list, but I'm so grateful Mercedes is getting school in and I'm able to spend lots of time with Mia. :) Hitting some balls and having fun while at Beale AFB for Spring Break. So nice to get away. About 3 weeks ago, after getting away to Beale AFB for the week during Mercedes' Spring Break and getting much needed rest and family time [side note: our apartment is one bedroom, 600 sq ft. The house on base was 4 bedrooms, 3 bathrooms. Yes, it was VERY nice to not be bumping into each other and getting projects done!], we visited Mia and I don't even remember what happened, I just know I was so anxious and I started getting tears in my eyes and I told Robert "we need to get her outta here!" That's nothing new to him... I've been saying that for about 2 years. His usual response is that we will in about 2 years - when she's around 5 years old. We left to go get dinner at the best Italian restaurant in Campbell - Al Castello's, and Robert shocked me with what he said to me over dinner. With his new job change coming up next week with the Air Force, he will be working at Lockheed Martin in Sunnyvale. He suggested we look for a house a little closer to his work, and bring Mia home.  He also suggested that maybe my parents can move in with us as well. I was stunned. It totally didn't sound like the Robert I've known for 8 years!! We started actively looking for houses but nothing came by near Lockheed. We looked a little more south of San Jose and there were a lot of options in our price range for at least twice the space as you could get in SJ. Long story short, we proposed our idea to my parents and after thinking it over, they agreed, so the search for the perfect layout began. While looking at model homes with out Realtor last weekend, she came across a lovely year old house that suited our needs perfectly. She told us we should really look at it - it had just gone on the market that morning.  The layout was ideal. Two bedrooms and a bathroom for my parents at the front of the house, and the master and 4th bedroom at the back of the house to give us all privacy, and the formal dining room is perfect for Mia's room. Not having doors is great so we can hear alarms and central to the living areas, etc. We all agreed the layout was great, but we wanted to see it one more time.  We went back on Sunday afternoon (not fun for me or Mercedes since I had a scratched eyeball and could barely see anything, and Mercedes was fighting 105.2 fevers due to having influenza b, we found out Monday) We went to our realtor's office Monday afternoon and put in an offer - ours was the second offer on the house. With our offer, we attached a letter explaining Mia's condition and they she's been in the hospital since birth, etc. We included family pictures as well. Tuesday morning we found out that the owners counter offered both offers and ...... we got the house! They are waiting for their new home to be finished being built, so we get the keys August 7th. It gives us about 3 months to get nursing and all the paperwork and insurance stuff figured out to bring Mia home - finally!!! The house is located in they very northern part of Gilroy. :) Our new home in Gilroy, CA We are so grateful and know God is blessing us beyond measure! I never imagined Mia would be coming home this soon!! :) Seems so unreal. :) Keep praying for us. It's going to be a lot of work getting everything ready, etc. We're not sure what we'll be doing as far as a wheel chair accessible vehicle... God will open the door for that I'm sure. We do need to move out of the apartment by June 1st when our lease is up, so we need to stay somewhere for the 2 months. We may be able to stay with my parents, but but my sisters dog doesn't quite like cats ... :) Lots of unknowns still! We're trusting God... He's faithful! :) That's what has been going on with us. :) Hope you're well! Blessed, Rachael

Great news!

Hi everyone,

Wow, not too shabby! It's only been a month since my last update on here. I'm getting better! haha

This summer has been busy, crazy, but filled of lots of fun times! Some of the highlights are: 

-Except for my Dad who was attending his brother's funeral in northern CA, our immediate Cortez and Adamis families including Robert's Grandma Marion were able to join us at 2nd annual CRC family picnic at the nearby park! All the cousins were so happy to be able to interact with Mia and Mia LOVED being outside with the family! She didn't have a single issue the whole time. We were at the park for a good 4 hours and we didn't need to suction her once! She was so happy and content just receiving so much love and attention from her family!

- Mercedes started soccer! She hasn't had an official game yet, but the past two Saturdays have been skills testing to make sure the teams are even... but at this age, it's just gonna be fun watching all the kids run after the ball! =) She's so excited! She's never done anything like this because we've always been so busy with Mia, but Mercedes is 5 now and needs this activity to be her own, plus she needs exercise. This crazy child can stay up forever reading, singing, talking, etc ... She doesn't get enough physical activity so we're all so happy about putting her in a team sport! She sleeps super well on Saturday nights - AND she even takes a nap! We're still trying to work on her understanding that soccer is a team sport - she has to share the ball, as do the other children. The first week didn't go so well. There were lots of tears coming from my Mercedes. =) This past Saturday, though, she didn't cry! =) I think she's understanding!

-We had our yard sale as planned last Saturday morning and I was so blessed to see how generous people were! As I mentioned before, Robert and I had decided that all proceeds from the sale would go toward the purchase of an iPad for Mia's communication developement. I made up a sign (photo below) and a few people didn't buy anything at the sale, but made generous donations! I didn't expect people to do that! Even a friend made a donation via PayPal which totally touched me! God blessed our sale and we sold a large percentage of what I had out with not much bargaining. Between the sales, donations and the little bit of money Mia receives every month from the State, we had enough money to purchase the iPad 2! Another friend was so thoughtful and offered their online discount, so they ordered it for us yesterday and we should receive it next week! I am so excited that we will be able to work more with Mia and hopefully we'll be able to understand her wants and needs better!

-More incredible news is that Mia is doing GREAT!!! She had a pretty rough time 2 weeks ago. They stopped doing the straigh caths (to empty her bladder to reduce the chances of future UTIs), so I knew she'd be getting a UTI. It would only be a matter of time. Sure enough, about a week later, I could smell it on her breath that she was getting sick. Two days later, she wasn't doing well, so I asked if they could please get a urine sample because I was positive it was a UTI. Yep. Another UTI. She was maxed out on her ventilator settings and was requiring a lot of oxygen, etc. After a day or two, once antibiotics were on board, they were able to lower a few vent settings because she was getting more stable. She had been doing pretty well for the week, but she's always had a pretty big air leak from around the trach (you can hear the air escaping from the stoma - the hole in her neck where the trach is placed.) On Tuesday morning, I went to visit Mia and her RT told me that they changed Mia's trach size to the next half size up, a 4.5 cuffed trach, and that it's controling the air leak a lot better. Right away I noticed her oxygen saturation was better, you couldn't hear the air escaping as much, her volumes (how deep her breaths are) were better, her co2 was better.... it was a great change! She had been using a size 4.0 cuffed trach since July 23, 2009 - easy to remember, since it's Robert's birthday. =)

So, because of how great she was doing with the new trach size, Mia has been able to be weaned down SO much this week alone!! Normally, because she's so sensitive to any little vent change, they can only change one setting once every 1 to 2 weeks, and only by 1. Tuesday, they changed the trach size. Wednesday, they lowered her pressure control from 22 to 20 (normally, they'd only change by 1, so 22 to 21.) She did great, so a few hours later, they lowered the pressure control again from 20 to 18! Her co2 was still perfect! Thursday, they lowered her pressure support from 18 to 16 and she took that vent change so beautifully that a few hours later, they lowered her breath rate from 22 to 20! Co2 still perfect. Honestly, in those 3 days, that's equivilant to about 2-3 months worth of weaning for Mia! We are so happy. =) She is, too! Mia is so much more active and alert. It's so exciting to see! 

I'm not the biggest fan of this blog editor so it's too frustrating to try to get the pictures where I want them, so I'm just leavning them where they are. =) Enjoy the pictures below!

God bless you all and keep praying for our family and especially for Mia!! We want her home so badly ... I pray that becomes a reality SOON!!

Blessed,

Rachael <3

On our way to walk to the park from CRC

Emma wanted to lay down just like her big cousin Mia!

Our girls with their 1st cousins!

Emma laughing as Mia kicks her leg. =)

Mia getting her milkies while dreaming of the nectarine she's holding!

 

Mercedes' first day of soccer skills testing! Yes, she's a ham. haha

Mia and Mercedes playing together

Stinky toes! =)

The sign I made to display at our yard sale last weekend

Its been forever!

Hi Everybody,

Why does it seem like I start every post like this? I can't believe it's been 3 months since my last update on here!

We've been doing well - Mia has had her ups and downs, but thankfully she's been able to see some specialty doctors to see why she's been so up and down. =) Last week she was able to see a urologist at LPCH (Children's hospital at Stanford) and she had the urodynamics study done. It was quite invasive, but hopefully it will provide answers to why she's been getting UTIs regularly.

It was interesting how they did the study - one catheter went up in her bladder (which they would fill with fluid), and another catheter in her tushie, sensors attached to her and to a monitor, so whenever she had a muscle contraction, it would show on the monitor. As they were filling her bladder, the doctor was taking xrays seeing the shape of the bladder, how full it was getting, when she'd have a contraction how much she'd empty it, etc. The study took a little over an hour long and she was very glad when it was finally over.

The one concern that I had that the doc answered was that it's not a muscle issue - she's perfectly strong enough to empty her bladder, but he thinks it's more of an neuro problem - she can't time the contractions and empty it at the same time. One time she emptied her bladder 80%, another time only 20%. He said he was going to call Dr. Silva (Mia's doctor here at CRC) and discuss his findings with him. He told me there basically are only 2 options at the moment to keep Mia from getting UTIs. Either keep cathing her twice a day to make sure her bladder is empty, or to paralyze her bladder and only cath her. Paralyzing clearing is NOT the way we are going to go, so we'll see what their plan of attack is going to be. Still haven't heard anything from Dr. Silva.

This past Monday, the eye doctor came and saw Mia. He hadn't seen her since she was 9 months old. At that time, she had perfect vision. Her vision has decreased since then - now she's near-sighted. 20/150. He's not concerned about it, though, since everything she play plays with and her little movie player is in the perfect spot and she doesn't require glasses right now. He says definitely when she's older, she'll need glasses and probably even corrective eye surgery to straighten out her eyes, but again, not anytime soon. He's thinking years down the road. All in all, he was still happy with her progress. =)

Mia remains active and very playful! She's definitely loving when her teachers bring the iPad for her to play on! She's not afraid to touch it at all anymore - she's still not too sure about touching other things, though. It's interesting - she totally knows she's in control of what she does with the iPad! We've been planning on having a yard sale for several months now and we've been slowly going through things that we don't need, etc, and I finally decided that all the proceeds will go towards the purchase of an iPad for Mia! Hopefully we will be able to have the yard sale at my parents' home on August 27th.

Mercedes is definitely doing well! (Well, although at the moment she has the sniffles.) I can't believe how much that girl is reading!!! It amazes me! She is soo excited about starting Kindergarten in September. Everyone asks her if she's starting Kindergarten this fall, but she quickly corrects them that no, she's starting in September! haha She is such a joy and keeps me laughing! She just had her 5th birthday on July 1st and partied the way she wanted! On her actual birthday, she and some cousins went to Chuck E. Cheese's and the next day she had a big SF Giants baseball party with friends and family at the park by home! That was so fun!! After that, we went home, had a BBQ and went swimming! She definitely had a great birthday! =)

I am very much wanting Mia home - I don't care if she's still on the vent, but I am so looking forward to that day and I pray it's a lot sooner than we think!! Keep praying for our family, especially Mia's healing. She is always making progress, even if it's the tiniest thing for a "normal" child, for her it's HUGE! I am so proud of her!!

Blessed,
Rachael <3

Video of Mia being super active on Monday!

I'm so happy she's so active now! =) Enjoy my silly little girl!

There is another video I'm trying to figure out how to get on here, but so far, no luck. =) I'll keep trying!

Rachael

It's been a long time since I updated on the blog!

Hi Everyone (if anyone is still following!),

I've been doing great updating my status on Facebook, because that's usually all the time I have to give a quick update or ask for prayer for Mia, etc. I have it on my calendar to write a blog every Friday, but the reminder goes off on my iPod, and I always forget to make the time to write an update. Hopefully most of you are following my Facebook updates anyway, so you're up to date with info as well as sweet pictures of our lovely daughters who are growing up so fast!

Princess Belle and Princess Ariel

Since my last update, Mia has turned 2 years old on February 4th! She had a perfect birthday party with dear friends from church and so many extended family! It couldn't have been any better! She had a Disney themed party and my cousin even gave Mia a Belle (from Beauty and the Beast) "ball gown", and Mia looked so gorgeous!!

Mia's 2nd birthday

The Cortez Family (minus Mia)

Tea Cups!

Astro Blasters!

Robert with 3 very excited cousins

The following day my entire family (parents, sister, brother and his family, Robert, Mercedes and I) took a trip to Disneyland. It was a surprise for Mercedes and her 3 cousins and they were very surprised! It was their first time and Mercedes (who is shorter than Arianna and Caitlin) was just barely tall enough to go on majority of the big rides! I quickly realized that she is a dare devil!! I had to go on some of the kiddie rides with her and she had to hold MY hand because I was scared! I've never been good with heights. =) Good thing I'm short! ;-) The trip was wonderful and Robert and I thoroughly enjoyed watching Mercedes be a kid and we learned so much about her and her personality. It was so sweet to see! Her favorite rides were The Pirates of the Caribbean and Big Thunder Mountain Railroad (which she went on 4 times in a row and still wanted to go back on it!!)

California Adventure

While we were at Disneyland, Mia was doing great and was actually weaned down to the lowest breath rate she had ever been at (and was doing GREAT!) - she was down to 15 breaths per minute. Two days after we returned from the trip, however, she got sick. She had to be maxed out on the doctor's orders of settings for her size and weight. It took her a while to get back down, which she has still not quite gotten back to 15bpm. Her lowest was 19bpm, then she got sick again, then of course, had to get maxed out again (usually 28bpm). Her latest two episodes of high co2 hasn't been due to repiratory issues. Two times ago, she was getting over a cold, then got a UTI on top of that and she was just working too hard, and I'm sure she was in pain from the urinary tract infection. They had to increase her settings to keep her co2 within range. The last time, just about a week and a half ago, her co2 climbed up again in the upper 60's/low 70's, so they had to max her out on her breath rate yet again. We don't know why her co2 increased that time. She didn't appear to be sick, but she was pretty wiped out and quiet. Right now, her breath rate is at 23bpm and they were able to decrease her pressure control setting by 2 the other night because her breaths were TOO large. That's always good!! It's always been hard to wean Mia from the pressure control settings.

Mia has had several UTI's (urinary tract infection) the past 2 years, so that has caused the doctor to keep a closer eye as to WHY she's getting them. He ordered an ultrasound of Mia's bladder and such. It appears that with Mia's overall low muscle tone, she's not emptying her bladder all the way, which is causing some urine to stay in there and cause infection. To try to keep her from getting another UTI, she is on a low dose of antibiotic for 6 months and they are now doing straight caths twice a day to completely empty her bladder. It's crazy how much she holds in there. A few times it's been up to 5 ounces! (A 'straight cath' means they manually place a tiny catheter up into the bladder to empty it.)

The latest bit of news for Mia is that she was diagnosed with Hypothyroidism, so they started her on meds for that. I don't know if she was just starting to feel better at the time, or if it is the medicine, but she is SO alert and active now!! I am so incredibly happy!

My mom went to visit with Mia for a few minutes before coming over to our home to pick up Mercedes ... and I'm so glad she got there when she did!!! Mia has not enjoyed her seat for the last few weeks especially, so I told the physical therapist, Scott, and he's been trying to think of something that will work for her. Mia is so little, and she doesn't have the strongest trunk/midsection to keep herself in midline, so there aren't very many options for an upright seat. Anyway, Mia has a wheelchair!!! My Mom took this video (below) of her (Mia was totally asleep while she was in it, though. haha)

I have a couple other cute videos but I'm still trying to figure out my new phone. =)

Robert, Mercedes and I are doing well. Robert left for Maxwell AFB, AL on April 17th for 5 weeks for Squadron Officer School. He's enjoying it and thankfully, so far, none of the tornados that have been devastating the South have been near Montgomery. The most recent ones were 60 and 70 miles away, which still isn't THAT far away. Keep praying for his safety, but most of all, for all of those who have lost loved ones and their homes, etc.

As always, I'll try to be better about remembering to make time to update this blog. =)

Blessed,
Rachael

New video of Mia from this morning!

Happy January!

We had a wonderful Christmas season with famliy and friends, and a very quiet Christmas day with just our little family with Mia in her room. =) It's exactly what I pictured and desired and I enjoyed it fully!

Some dear friends blessed Mia with a different tool that seems like it'll really help her with her muscle strengthening! It's a Wingbo, and I had never even heard of it before, but we tried it out with Mia today and she loved it! It belonged to a sweetheart named Sierra who recently went home to be with Jesus and is perfectly healed now! Here is a video of Mia trying it out for the first time below:




Keep the kids at CRC in prayer. The cold is going around, and unfortunately, for these kids, that means it could turn into pneumonia or RSV. The facility has been in lockdown mode for about a week now (the kids can't leave their rooms) to try to stop the virus from spreading to other kids. So far Mia is okay. She was one of the first to get a cold, and thankfully, it didn't turn into anything. They tested her for RSV as well as doing a chest xray last Monday, and she came back negative for RSV and her lungs looked great. Praise God!

Completely unrelated, another patient and dear friend of Mercedes and our family was freed from her health problems and went home to be with her Maker on Tuesday. Our hearts are saddened because we miss her and will continue to miss her, but we are so happy that she's not suffering anymore! What a beautiful year old little girl she was! Please keep her extended family in prayer as they plan the funeral and trust God that finances will come together so they can afford the burial.

Blessings to you all,
Rachael

Christmas Newsletter 2010

Merry Christmas!

Praise God, we are doing well! This year has flown by so fast … that's usually the case when you're extremely busy, I suppose. =)

Our time in Sacramento was very short lived. We bought our house in October of last year and just a few short months later, Robert's bosses boss came to visit the Air Force ROTC detachment at Sacramento State and told Robert that he needed to be down in San Jose with Mia, Mercedes and myself. At the time, he was given a 4-day weekend pass to be with us in San Jose. Mercedes and I would also go up for around 5 days a month to live together in our home. It was fun, but different trying to relax, but still needing to unpack and set up the house. The drive to Sacramento was always relaxing and just so pretty in fall/winter/spring. With the green rolling hills, and beautiful clouds, the drive was just what I needed! =) 

Robert: Robert is definitely enjoying working at San Jose State University AFROTC Det 045! Robert actually graduated from SJSU and became a commissioned officer through AFROTC Det 045 5 years ago, so it's pretty neat to be back, but on staff! It was challenging with Robert working in Las Vegas and then Sacramento before getting his assignment to San Jose. That was a long 18 months of not really living together, but we're so grateful to be together again! Robert began working on his Masters in Science of Aerospace Systems at the beginning of November. I'm glad he's enjoying it, otherwise it'd get very difficult for him to come home every night and spend several hours reading the material. We're grateful it's an on-line course – most of the time he studies in Mia's room, so he's able to be with her every evening!

Rachael: My days are very busy with being a wife, a mother to Mercedes and Mia, trying to get our new tiny 600 sq. ft. apartment in order, etc, but I wouldn't change any of it! I am just so extremely blessed that we were able to find a place to live just down the street from where Mia resides!! Just a 2 minute walk! I am also very grateful that my parents are so willing to care for Mercedes so I can visit with Mia by myself at times, or so I can go to the gym, or when Mercedes is sick. When she's sick, she can't go visit Mia, which usually means I have to stay home with her and I can't visit Mia, either. I am very blessed to have my family's support! That's pretty rare for a Military family being stationed so close to family!

Mercedes: She has grown up so much this past year! She started Preschool and is LOVING school! She is thriving in reading and spelling, too! She blows us away!! She is such a joy and is a wonderful big sister! Every time we drive by the Children's Recovery Center, she always yells out “Bye Meesters!! I love you!!” She's made many friends at CRC; patients, siblings of patients, and staff included! The therapists say she's going to be some sort of Therapist when she grows up! =) She loves going to church and is so excited to go to Sunday School and her love for God grows each day. She is also quite the prayer warrior! She prays for Mia to get better so she can live at home with us as often as she thinks about it – which is several times a day!

Mia: What an incredible little girl our Mia is!! I have tears in my eyes just thinking about the miracle she is!! She has improved so much this past year – and is SO big now!! I can't believe she's going to be 2 years old already!! She loves music and will “sing” whenever the Music Therapist starts singing and playing guitar! As soon as the music stops, Mia stops. It's so cute! She is also quite active and rolls from side to side now... very fast! Developmentally, she has also drastically improved! Just in April, she was “scoring” in the 0-4 month range mostly and in November, she's mostly scored in the 9-12 month range!! She is still 100% ventilator dependent, but she is breathing much more on her own than she was a year ago. She is very slowly being weaned from the vent settings and we continue praying for her health and development! 

 

Our daily life is extremely challenging, but there are so many more families with even bigger challenges. We are so blessed to serve the Creator of the universe, Who made of each and every one of us! Remember the reason we celebrate Christmas – the Savior of the world, Jesus Christ, was born to die to save us all from our sins so we can spend eternity in Heaven with Him!

Blessed,

The Adamis Family