The Adamis Family Christmas Newsletter

Our Second Beautiful Daughter Was Born!

Mia Amore Adamis entered this world on February 4, 2009 at 1:02pm.

She weighed 5 lbs 12 oz and was 18 7/8'' long.

As many of you know, her birth has changed our lives drastically!! Mia was born only 2 ½ weeks early, but her challenges are many. She was born having seizures and also was not breathing. She is 100% ventilator dependent and hasn't been able to make too much progress on weaning off the machine, but she has progressed greatly in other areas, though! =) She's is able to “talk” above her trach and she loves batting at her toys hanging from her toy bar as she sits in her bean bag. She loves when Mommy kisses her all over! She loves looking at herself in the mirror and loves staring at her hands and grabbing her nose. =) She is such a joy to everyone around her – especially her family! She has stolen so many hearts. She's now a chunky 10 ½ month old who is getting stronger daily! Continue praying for a miracle in her body! Doctors still haven't been able to diagnose her, but we are trusting her Creator with her life as we care for this precious child He blessed us with!

This year has been full of challenges. Mia was born in Las Vegas and was there at the Sunrise Children's Hospital NICU until April 15^th when she was taken by air ambulance to Children's Hospital Oakland NICU for 6 weeks. On May 26^th, she was moved to Children's Recovery Center in Campbell, CA (just outside of San Jose) where she now resides. During that time, Robert was still working in Las Vegas until he got his new job working at Sacramento State University teaching Air Force ROTC in September.

Ever since Mia was taken to Oakland, Mercedes (3 ½ years old) and I have lived with my family in San Jose to be near our baby. Having Robert in Sacramento has been so nice! He comes down every weekend so we can spend time together and Mercedes and I will be going up to Sacramento one week out of the month to spend as much time with the three of us in our new home we purchased in October. We want to provide Mercedes with as much normalcy as possible, which can be difficult in our family situation.

We are so grateful God blessed us with Mercedes Faith as our first born daughter!! She is the most easy going child and just goes with the flow! During these last 10 ½ months of always being at the hospital and having somebody watch her at some point in the day, she has only had a melt down about 3 times where she didn't want us to leave. She is so sweet; goofy; caring; crazy; thoughtful; kind; fun; and the list goes on and on. She is so kind with our big 9 month old kitty Willow and always loves playing with him and giving him hugs and kisses! Just when I don't think my love for her can get any deeper... somehow, it grows!! I can't get enough of my beautiful girls! =)

Robert and I are doing very well considering these stressful times. God has definitely shown Himself faithful and we are always willing to receive His blessings He has for us! A lot of times you hear that when health problems arise with children, there's a lot of arguing that goes on with the parents. Even though we dealt with so much sadness and uncertainty of our daughter's condition, God always gave us such peace and our decisions were always unified. God has brought us closer and now our relationship has strengthened greatly! Don't get me wrong – we're still only human and at times it's extremely hard to not know what the near future holds for Mia, but we just need to remind ourselves to rely on God and to fully trust Him in every area of our lives.

For updates on Mia and our family regularly, visit our family blog at: www.TheAdamisFamily.blogspot.com

Merry Christmas and have a wonderful 2010! Keep our family in your prayers. =)

Love,

Robert, Rachael, Mercedes Faith and Mia Amore Adamis

A Very Merry Christmas!

Merry Christmas, Everybody!

It's been a couple of days since I last updated... and I do have a good update! =)

The transport from PICU to CRC was a little stressful. Thankfully Sheila, an RT from CRC, came to the PICU to make sure the vent settings were just right. The vents the paramedics use are a different model than what CRC uses, so they couldn't get the settings exactly right, so Mia was getting upset and started to desat, so once they got her as stable as possible, they rushed her over to CRC to finally be home. Boy was it a relief to be back!! This is the first time I've felt that CRC is actually Mia's home. It was so good to be back! It was so good to have Jay be there to get her settings just right. She had a rough time the first hour or so that she was there just because she had to recover from the vent settings not being correct.

The really strange thing is that the majority of the time while in the PICU, Mia's settings were REALLY high. She was requiring 35% oxygen (almost 4 liters). Jay came to visit on Tuesday and he was curious of all her settings and co2 and such... and we were both wondering why her settings were so high and she wasn't satting really low. She was always hanging around 90%-96% oxygen saturation. On 35% oxygen, you'd think she'd be satting at 100%.

When she was all settled in, she got a bath, and totally knocked out! Jay set her on a high-flow oxygen set at 100%. Then they were able to lower it to 40%, then 35% and satting 100% within about an hour of her being back. That was exciting to me!

By the next shift, her c02 was great - right where they should be AND Jay was able to wean her down to only 1 liter (25%) of oxygen and she was between 99%/100%!

In the middle of the night, Mia's co2 was too LOW!! haha So, in order to get her co2 higher, guess what the RT had to do? Yup, wean her breath rate on the vent!!! Isn't this great?? =) Her settings are so much better now and her breath rate is now 30 bpm and in the PICU it was 40 bpm. Mia is doing great at between 1/2 to 1 liter of oxygen and her co2 is remaining in the low 30's - right where it should be! Praise the Lord!! =)

It's confusing us to why Mia was requiring so much of everything while in the PICU. We're thinking something was set quite right, but of course, there's no way of knowing now.

Merry Christmas to you all!!

CT Scan and update...

Hi Everybody,

Thank you so much for praying for Mia and our family.... I feel like I always ask for prayer... but get used to it!!! Pray like crazy for Mia's healing! She's improved greatly - except for the respiratory area. She's made some small improvements, but Dr. Silva and the RT's are very concerned about her lungs. They're very stiff and are requiring a lot of pressure to inflate her lungs. Dr. Silva is worried that that with so much pressure, the little "balloons" inside the lungs will get damaged very quickly. There isn't any type of medicine or procedure that they can do to cause fast new growth, so they're worried that they'll be getting damaged faster than new growth will happen.

Here are the images from Mia's CT scan of her brain. The LEFT images are of a child around Mia's age. The images on the RIGHT are of Mia's brain. You can see the vast difference.

The grey is brain. The black is water. The white is skull.

Dr. Silva says it's not really Hydrocephalus because the surgery for that (the shunt in the head to drain the fluid) won't do much because there's so little brain that even if they drained the water, it'd just fill up the empty space again.

At first the images really scared me - which is why I haven't written about it until now, but God can do anything!!! He can replace any cell in her body. I have been praying since Mia's birth that whatever cells are missing, that if it's God's will, He will replace them.

What gets me is that with the smaller percentage of brain that Mia does have, she has come so far in her development!!! How much brain do we actually use anyway?? =)

So.... this does give us a much better way to pray now that we have a better picture of what's going on inside Mia's body.

1. Pray for Mia's lungs so she doesn't require as much pressure from the vent. Ultimately to be weaned from the ventilator.
2. Pray for Mia's brain that God would cause it to grow.
3. Mia's c02 to be stabilized.
4. Mia's surgery the day after her birthday - February 5, 2010 - to put the tubes in her ears.

Mia's been getting tummy time that she has been enjoying! It's definitely something I'll be doing more of at CRC! =) Doesn't she look cozy?

Have a Merry Christmas! =)

Sorry for not updating the blog! =)

Hi Everybody,

I've been doing short updates in my Facebook status, but I haven't put enough effort into actually setting up my laptop and taking the time to write an update on here.

Mia is doing better, which is wonderful! God knew she needed to be here. I had planned on going up to Sacramento with Mercedes this past Wednesday so Robert and I could work on Christmas gifts, then we'd all come back down today, but seeing that Mia wasn't doing too great last Sunday, I called him and told him not to count on me going up to our home because I had a feeling Mia was going to be sent out to the PICU this week. Two days later, she was. And I'm glad she was! She needed the extra care, the quiet, the rest, maybe not all the crazy poking, but... =/ I needed the break, too. On Sunday night, I was getting pretty stressed out. I told Robert I wish I could just go away from everything for a week. On Monday, I needed to get away, so I went to visit Mia for about an hour and a half, then I went Christmas shopping for the girls, then I took myself out for lunch. I don't think I've never really done that. It was nice that I wasn't in a rush to go anywhere... just having a slow lunch alone while reading a book - another thing I haven't done in a long time!! I have so many books I want to read, I just haven't found the time to do it yet!

Anyway... coming to the PICU is also what I needed. Knowing that I need to be with Mia and that I'm not worried about needing to rush back to Mercedes has relieved stress right there. My parents never tell me when I need to be back, I just want to be respectful of their time and want to give them their own time to do whatever they need to do. It's been nice having the break and just being able to rest here in the super quiet PICU with Mia. =)

About Mia:
Wednesday Tuesday night and Wednesday were super crazy for my poor baby girl! Dr. Smyklo really wanted to get a PICC Line in Mia, so a team came to Mia's bed on Tuesday night and poked her multiple times in both feet, legs, and her right arm trying to get the PICC in - for a little over an hour. Of course, Mia was on morphine, sedated and also paralyzed so she wouldn't move. But they still couldn't get it and they didn't want to poke her again.

Wednesday morning, Dr. Smyklo decided just to try to get a central line in, so they did the same drug routine to knock Mia out, then tried... for an hour and a half. She did get an artery line so they don't have to poke her every time they need blood, so at least that's good. =) She wasn't able to get the central line, though. A few hours later, they sent Mia down to Radiology so they could use their lighting so they could see her veins and they tried to get the PICC line in her left arm. They used contrast dye so they could see her veins better, too, and after poking her about 4 different times in her arm, they couldn't feed the PICC past her shoulder, so she never got a PICC or Central line because her veins were too tiny and didn't have one that was straight enough. While she was down in Radiology, though, they did get the CT Scan of her brain. I'll post those images in the next blog and tell a little more about it then. (Above pictures are of Mia in Radiology.)

Wednesday, after all that poking, Mia was really uncomfortable, so they sedated her just so she could relax and rest. She hasn't needed any pain medicine at all since Thursday, so that's good! =)

Dr. Silva's rotation started in the PICU now, so he's her Dr. here for the weekend. He had said she was good enough to go back yesterday, but I didn't like that idea. Brooke, Leslie and Amy (CRC nurses) came to visit on Thursday and they agreed with me and encouraged me to tell Dr. Silva that I didn't want her to leave until Monday. With all the kids just getting over the fevers that were going around at CRC, Mia definitely needs to rest here in the PICU where it's quiet.. and where there are only two patients - herself included. I think Dr. Silva is going to let us stay. He hasn't said anything otherwise. =) I went to CRC yesterday to get some socks for Mia and I talked to Jay and Audrey (both RT's) and told them of her vent settings here in the PICU and Jay doesn't want her back on how high of settings she's on! So, I know he won't let Dr. Silva bring her back until Monday either. =)

Mia has had lots of visitors, which has been wonderful! Right now it's only parents and grandparents who can visit at CRC, but as long as you're over 14 and healthy, anybody can visit at the PICU. Her extended family, especially, has loved that Mia's in the PICU so they can finally visit! =)

That's about it!

I'll keep you all posted...

Rachael <3

Some news...

Hi Everybody,

Mia's doing alright... she's really sleepy and slowly getting swollen and puffy, but she's doing alright. Her co2 has definitely come down - it's hanging around in the 30's-40's, which is great. Her vent settings are really high, though, and it's requiring a lot more oxygen. I think she's set to 45% oxygen. At CRC the most she was needing was 28%.

Dr. Smyklo did tell me just now that Mia has a little bit of pneumonia in both lungs. It's nice to know that she was getting sick all this time, although we're not sure exactly if that's the reason why her co2 has been hard to control, as well as her having seizures much more frequently. She's had possibly 5 in the past week or so.

I never got a chance to write about Mia's appointment to Stanford last week. The appointment was okay - of course, again, there was miscommunication. The doctor knew nothing about Mia, or why she was there... anyway.... all in all, I think it will be beneficial. I'm so glad RT Jay came along because between he and I, we were able to answer about 98% of her questions. =)

Dr. Witcoff, the Pulmonologist at Lucile Packard Children's Hospital (Stanford), has a few ideas. The main one that I think could be beneficial is Mia could be admitted to LPCH and during her time there, have tests done while the Dr. observes her. That was her idea - we're not even sure if Dr. Silva (Mia's primary doc) will go for that. We'll see what the two doctors decide. They should be in touch sometime this week.

=========

I had to leave the room because Dr. Smyklo was going to attempt the central IV on Mia. I was in the hallway for close to two hours, I think, and finally they came out. I was reading a book, so I wasn't too stressed out. =) One good thing is that they were able to get an IV in an artery, so now they don't have to poke her all the time when they need blood work. The bad news is that they kept getting the artery on the other side - they needed a vein. Mia's so chunky (and now swollen) that they can't find her vein, so Mia will have to go downstairs to Radiology so they can use their lighting to get the actual PICC line in. While she's down in Radiology, she's going to get her CT scan of her brain as well.

Mia's doing alright - very sleepy and swollen. I'll post a picture of her. She all of a sudden looks like such a big girl! This is the first time she looks like a child, not like a baby! I can't believe how big she's getting. =) Of course, it's probably the swelling that is making her look a little bit older, but I still can't believe she'll be a year old in about 6 weeks!!

I'll keep you posted,
Rachael <3

Mia is stable in the PICU....

Hi Everybody,

After 11 days of trying to get her co2 under control, they finally said enough is enough... this morning, after a scheduled breathing treatment, Mia's co2 reached an all-time high of 99. I had only been with her maybe 5 minutes before they said they were going to call Dr. Silva to see what he wanted them to do. When I first got there, the charge nurse basically warned me that things weren't going the greatest this morning, so I kinda knew what I was walking into when I went to her room.

Dr. Silva didn't want to wait any longer, so they called 911 and within about 6 minutes, we heard the sirens and they were in her room in no time! Being that they called 911, the fire department showed up as well. There was quite the crew in her bedroom!! The fire dept. was cleared to leave, but they still hung around until Mia was in the ambulance. Jay, our fabulous RT, bagged Mia the whole trip over (only 5 minutes) to the ER. In other words, she wasn't on the vent - he was giving her manual breaths with the "bag".

While in the ER, Dr. Silva met up with us, Jay and Dr. Smyklo who is also taking care of her here at Good Sam. They decided they wanted to order chest xrays, lots of blood work, and a CT scan of Mia's brain. They were going to do a central IV in Mia's leg, but they're not going to do that. They're doing a PICC Line instead. The PICC line is a super tiny catheter that goes a vein in the arm and they guide it along until it's near the heart. It's definitely much more intense than an IV, so pray it goes well!!

The one HUGE blessing is that the rules here at the PICU are so much lighter than at CRC!! So, my dear Uncle Eli from Maryland who arrived to San Jose this morning was actually able to meet Mia!! We had planned that he'd see Mia through the window at CRC, but meeting her face to face was so much better! Renee, my sister, also was able to see her again. =) She hadn't seen her this close since September and she was so happy! She couldn't believe how big she's gotten... and how big her teeth are! hehe =) Renee says this is the best Christmas gift ever! =)

Robert arrived here safely. Thankfully school was going to be over at the end of the week anyway, so he doesn't need to go back for about 3 weeks. He might have to go back for a morning a week or so. =)

We did get a sweet surprise - two of my very favorite nurses from CRC came to see how Mia was doing. I love Amy and Leslie - even if they don't have Mia as a patient, they always keep an eye on her - they always baby her! Mia has stolen so many hearts. =)

I have internet access here in the PICU, so I'll be able to post blogs regularly. I'll be able to - we'll see if I actually get it done as often as I'd like. =)

Keep praying!

Rachael

Mia is in ER at Good Samaritan Hosptial

Mia was rushed to Good Samaritan by ambulance because her Co2 was up to 99! While she's in the ER, she'll be getting a CT scan of her brain, a chest x-ray and some blood work done before going up to the PICU. She'll likely be here for several days. Please continue to pray for Mia and our family. Robert is on his way down from Sacramento now.

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

All moved in!

We're all moved in now!! And can I say... massive garage sale?? haha We have so much stuff we don't want or need - it's crazy!! Of course, since the Military was moving us and they pay by the pound, we didn't have an incentive to get rid of anything. Good that we got paid for the weight, but total bummer that we have to go through everything now to get rid of it. =)

My in-laws drove the first load of our things on Saturday morning, then when Mercedes and I arrived, in parents-in-law; Robert; and Isaac already had almost everything unloaded. Two of my friends came to help unload, but the truck arrived about 3 hours earlier than we had originally planned, but at least they were able to help Robert and Isaac with the table saw! =)

While they went back up to Chico to bring back the second (at least) load, Mercedes and I went for a drive to find Target (which I never found because I didn't read the directions correctly) and got to know Arden street VERY well! :-P We found what we needed at a different store, though! Renee was coming up to help with the second load and when she got off the freeway, I just happened to be 3 cars behind her! She was able just to follow me to the house instead of bother with directions, so that was pretty handy! =)

Renee was a HUGE help with hanging up the hardware for the curtains in all of the rooms. I definitely need to build more arm strength! heehee

Our next door neighbor, Chris, was very kind in letting us fill up some buckets for water so we could at least flush the toilets (because our water turned off on Friday - it turned back on today.) =) Mercedes has been so used to flushing the toilet after she's done using it that I kept scaring her when I'd tell her not to flush! "Mercedes, NO!! Don't flush it!!" That was pretty funny. =)

Mercedes LOVES her new house!! She's so excited!! I got her bed set up and she was having a blast in her bedroom. =) After I tucked her into bed, she called me back into her room and she told me "Mommy, now Baby Mia has to come in an ambulance to our new house in Las Vegas!" I thought that was so sweet that she knows Mia belongs at home. =) She's still confused about what city our new house is in, though. =) She thinks Sacramento and San Jose are buildings, I think. So she keeps saying our new house is in Las Vegas. =)

Mercedes did NOT want to go back to San Jose! She was so sad to get our things packed into the car again. She keeps asking when we're going to go back to our new house. She says "I wuv my new house! I wuv my room!"

Tomorrow Mercedes sees the allergist for the first time. Pray, because they're going to attempt to give her the seasonal flu shot. She's never ever had one before because of her egg allergy (the vaccine is egg-based.) Mercedes is terrified of doctors, and she's actually going to get stuck, so it's not going to be a good experience. Even if she just gets her feelings hurt, she'll work herself up so much that she'll end up throwing up from crying. So, please pray!!! Her appointment is at 10:00am PST.

Mia is doing really well! Oh my goodness she's so beautiful!! =) They weaned her by one breath today, so now she's set to 22 bpm and she's usually breathing anywhere from 22-35bpm, so a little above the vent! We're very excited! =) She's doing so well in her physical therapy, too. I need to take a video of it one of these times... she really enjoys her tummy time and is doing REALLY well bobbing her head around. It used to just hang and she was so weak that she couldn't even move it. Now she's moving it all over!! She's so much stronger!! =) Keep praying for her!!

As for me, for whatever reason, I can actually smell!!! For those of you who don't know me very well, I've had 3 sinus surgeries and have been feeling miserable for about 6 years. Always congested, always sound like I'm sick, but it's just me. My sinuses are abnormally small and other crazy stuff going on in there, so it's just soooo strange and wonderful that I've been able to smell for about 3 weeks now!!! I'm trying not to be negative about it, but man, it was a whole lot easier when I couldn't smell when I was cleaning the kitty litter box! heehee I'm just sooo grateful I can smell!! I'm not sure why it's changed all of a sudden, but I'm glad it has. Keep my health in prayer, too. I'm also going to see the allergist soon at some point. I'm basically allergic to everything environmentally, just very mildly. Medicines don't work, so, we'll see what happens!

Robert and I are heading for Vegas on Friday and will be there until Wednesday, the latest. We'll be there to fix up the house and get it ready for renters. Lord willing, we'll be able to rent it out! Pray for our protection driving out there and back!

Again, I haven't transfered the pictures off of the camera yet, but I will soon! =)

Love to you all,
Rachael <3

Moving day!!

Well, it's time for our empty house to become an official home!! Mercedes and I are leaving early in the morning for Sacramento to help unload and set up the house as much as possible. Yes, she probably will be "in the way" at times, but I want her to be able to get a visual grasp on what's really happening. I want her to see that all of our things from Las Vegas are being moved into the house in Sacramento and that she'll have her own bedroom again for a week out of the month when we're up there, etc. I can't imagine how confused she must be with all of this craziness from picking up and moving out here; to staying in Auntie's bedroom; to Daddy only being with us during the weekends; Mommy sleeping outside in the trailer; etc. =)

It'll be good! Pray everything will go smoothly and that nobody gets hurt in the slightest.

One thing that our realtor neglected to inform us of until today was that our water was being shut off today! Robert called the water company, but apparently they can't disconnect and connect in one day, so we have to wait until the next business day - Monday - to have water! It'll take some getting used to not having water readily available, but I know we'll manage! =)

Mia is doing great, aside from the fact that she's a growing little 9 month old who just cut her first top tooth!!! You can tell she's in terrible pain - her gums are so swollen and red, as well as her cheeks. Her heartrate is really high compared to her norm, so that's basically the only way for us to know when she's in pain. She just looks so out of it when she is. This morning she actually looked really good, though! No redness in her cheeks and she was so bright and cheerful! Be praying for comfort for her as she continues working on getting her tooth all the way in, as well as her other top tooth coming in.

On another note, Mia had, what appeared to have been, another seizure last Friday. Her body went totally unresponsive and her eyes were totally rolled back for about 4 minutes. During that time, she either fell asleep or passed out or something, because she was totally out of it, but her eyes finally came back down to where they should be. About 12 hours later, they raised her Phenobarbital level, and that totally knocked her out. She was getting it once daily at 9am, but it was knocking her out all morning and afternoon, so they now changed it to 9pm and that's working much better for her! She's now able to be awake for her group developmental therapy time and her physical therapy time, so that's great! She's now really active again playing with her toy bar and looking around - we're definitely happy to see that again!

I know Mia is pretty stable now compared to where she was 9 months ago, plus life is busy and such, but please whenever our family comes to mind, pray for our precious Mia Amore! God has brought her so far and we know He's not finished yet!! He's doing a mighty work in her beautiful body! She's taking more breaths on her own and the RT's have been able to wean her breath pressure settings! She's still not tolerating weaning from her breath rate quite yet, but they said her lungs are getting much stronger! They're not requiring so much force from the machine to give her the breath, so that's why they're able to wean her pressure setting. Praise God! =)

Well, 6:30am is coming quickly, so I must say goodnight.

Keep praying for Mia's Miracle!

I'll post some more pictures soon. I just wanted to be sure to write at least an update for now!

Goodnight,
Rachael <3

Huge progress for Mia!! =)

Hi Everyone,

Just an update on Mia...

We are SO proud of her!!! She starting to take a few breaths on her own now, which we haven't seen in a long time and now she's really starting to play with her toys and be so interactive!!

In this video, Robert is holding up the suction hose to her and before I started recording, she grabbed the hose with both hands! We've never seen her do that before. She's always touched things, but never held on before. Sure it was only for two seconds, but that's progress!! =)

For those of you who are reading this update via email, you'll have to go directly to the blog website to watch the video. www.theadamisfamily.blogspot.com

Enjoy! =)

Rachael



I also added MANY pictures from October and November to my facebook page. I'll enclose the link here. Check them out! =) http://www.facebook.com/album.php?aid=131783&id=614762171&l=0948264cc1

Adamis Update

Hi everyone!

Yesterday, Mercedes and I followed Robert up to Sacramento to see where he works; see our new house; and sign 100 more papers at the title company! I'm really glad Mercedes went with us. I wanted her to know what "Sacramento" was since Daddy's always there and now she knows! Although, she doesn't realize it's an actual city. She thinks the building Robert works at is "Sacramento." heehee =) She's so cute! She did a great job all day long. While we were doing the business stuff, she just sat down quietly and watched some cartoons on Robert's hand-held computer tablet. I was very proud of her. Especially since she just seriously started potty training last week and with the very busy day of driving 2+hours to and from Sacramento, not once did she have a wet diaper all day long yesterday!!! We are so proud of her!!

The house is really nice! There are just a few changes Robert and I would both make, but it's a really nice house. It's a lot smaller than all the other houses we were looking at, but it's about the same size at our house in Vegas. This house has a lot of closet/storage space which makes it very functional, so that's a big plus! I think Mercedes liked the house, too... =) Click on the video below.


I really like Sacramento. It's so old and the neighborhoods there are amazing!! Gorgeous old houses - talk about character!! Of course, our house isn't like that. C'mon - it was built in 1980! haha One of these days, though, maybe we'll have a 100 year old house! =)

We were driving around and I was talking to Robert saying that Mia needs to get better so she can come live with us in Sacramento so we can go for walks. Mercedes heard something about a walk, so she said "Mommy, what did you say walks for?" So I explained what I had said and she got a HUGE smile on her face, threw her arms in the air and said "Oh, that would be GREAT! Go for walks with Mia in the WAGON!! Aww, baby Mia...." I thought that was so adorable!

Mia is really doing very well! For the last 10 days or so, Robert especially has noticed that Mia is taking some breaths on her own!! Just a few, generally, but a few times we've noticed her breathing 10-15 breaths above the vent settings for 30+ minutes! We haven't seen that in a REALLY long time, so this is very encouraging!!

She's getting very interactive and really enjoys playing with her toys (especially the little cat toys Mom found at Target! Little plastic balls with jingle bells inside.) We hung the little balls on strings and attached them to her toy bar. She loves it. =) She's talking more and more over her trach, too, which we haven't heard in a while!

Mia had a quarterly review two weeks ago. As far as her respiratory view, it hadn't changed too much. BUT they are VERY pleased with her neurological progress! =)

All the kids at CRC are getting their flu shots, but since Mercedes is highly allergic to eggs and there's always a good chance siblings could have the same allergies, I didn't want Mia getting her shot unless shew as tested for egg allergies. They tested her and she's not allergic to eggs, which is great!! They didn't test her for anything else, but of course we're praying she's not allergic to food - or at least different things than Mercedes is! =)

Mia is getting a lot stronger. She's holding her arms and legs up for much longer periods of time and she's getting really good about moving her head around, in very controlled movements. She's not at floppy, althrough, she's still rather weak especially when she's sitting up. But, an improvement is an improvement!! =) I'm always proud of her!

Robert and I are doing well... the weekdays apart aren't too bad, thanks to phones, texting, chatting online and now Skype (video chat)! I've actually been sick for the past week and wasn't able to see Mia last Tuesday, Thursday or Friday. I had a really weird sore throat, then it turned into an occasional cough, then I was fine. Then that night my chest started getting congested and I've been congested ever since. I feel better this morning, but I'm not sure if I still need to go to the doctor or not. I really don't want to get meds, but this cough just isn't very productive which kind of worries me.

On Friday, I had missed Mia so much that I HAD to see her! I knew I couldn't go in, but I decided that when Robert got there, I'd have him visit with her in her rooms so I could stand outside by the window and see her, too! That's actually not a bad way to visit! On Saturday I was given the OK to come in, but with a mask, so that's how I visited Saturday and Sunday. I wasn't able to visit yesterday because I got home late from Sacramento, but I plan on seeing her today.

After spending so much time with just Mercedes last week, when I finally got to hold Mia, she felt so light and tiny!! She's about 16 pounds, which isn't too off from what most 9 month olds are, but compared to my biggest baby girl, she felt so little! =) I loved holding her!

On Saturday, Robert took Mercedes and I to Half Moon Bay for the day. We went for a beautiful long drive, had lunch at a restaurant, walked on the pier, then took Mercedes to a Pumpkin Patch for the first time! (I don't think there ARE any in Vegas!) It was a great day!! =)

You can pray that the closing cost money gets wired to the title company in time today, because if it does, the transaction will get recorded today - we will close on the house! Robert MAY be getting the keys tonight if all goes well! If not tonight, then tomorrow. I guess he's going to look into beginning to stay there on Monday - IF he can get some internet. An empty house without people or internet can be very boring! =)

Continue keeping our family in your prayers!

God bless you all,
Rachael <3

Hmmm...

I'm not sure why there isn't a link to the story, but I'll post it here so you can see it. I guess you have to click "I Like This" to vote for my story. I'm not exactly sure, but I think if I get a certain amount, I get a $100 gift card to Kohl's. =)

"I've gotten a few sweet deals at Kohl's, but this is, by far, the best deal yet! Last winter when I was pregnant, I really needed a jacket, but I didn't want to spend money on a maternity jacket that I'd only be able to wear for a few months. I found this beautiful corduroy jacket that was regularly $80.00 but on sale for $39.99. I thought that was a great deal, so I decided to buy it! Little did I know, it rang up $24.99 at the register AND I had a Kohl's Cash Card that I got in the mail for $10.00 off! I got the jacket for $14.99! Sweetness!"

I'll post a real blog later today about our family. =)

Rachael

Check out this entry I found on Raise Your Receipt.