Nicely settled in at the Children's Recovery Center...

It actually happened!! The EMT's arrived to Mia's bedside around 10:20am and we were on the road around 11am! I was so glad that Peggy was able to be the nurse to go with Mia - they know each other very well! =)
(EMT guys, Peggy, transport resident, me, and the transport RT.)
The CRC is very nice and the staff are all so sweet and the kids are adorable! Mia has a roommate - Sophia. She's 18 months old and loves to smile! Her former 2 year old roommate loved SpongeBob, so now Sophia gets so excited when she hears the theme song! She was watching it this afternoon when Mercedes came to visit Mia, so Cedes was a little distracted! =) It's so cute seeing Mercedes with Mia... she walks in and uses the sweetest voice and says "Awww, baby Mia Amornay is so dute!!" (Her "c"'s are "d"'s)
(Mercedes is reaching through the tubes to hold Mia's hand.)
Back to yesterday... I drove up right before Mia did and there were my parents, sister and Mercedes waiting for her arrival along with a dear old friend, Kerry, who couldn't miss this big event!! It was such a sweet surprise to see her!! I don't even remember how many years it's been!

Mia is transitioning pretty well. Today her Co2 was pretty high, so she was knocked out for the morning until they put the Co2 monitor on. They got it down to the 40's and then she was much more alert. It was so cute... when I came in to visit this morning, it was time for the kids to socialize with everybody, so all the kids were in the hallway either in highchairs, on the floor with toys, in swings/bouncey seats.... and there was Mia!! She was so ADORABLE in her little bouncey seat!!

Today was the first time that I actually felt like I had two daughters. It was a different feeling! I've really only been a mother to them one at a time, but this time they were together! It was really nice! =) Seeing them side by side, I now see that they DO resemble each other!

Today Mia got lots of visitors! Papa and Grandma Adamis, Great-Grandma Marion, Uncle Beau (my brother Robert), Auntie Jen, Nana, Mercedes and Auntie Nae! =) Mercedes and I were able to go out for lunch with my in-laws to a great Mexican restaurant, so that was great! =)

Tomorrow Robert arrives for the weekend to see us and we're also going away for a day for our wedding anniversary! It's been 5 weeks since he's seen us girls, so it's definitely going to be nice! Mia has changed so much and is doing many more things now - even Mercedes is talking SO much more! Some of the words she says amazes me because I've hardly seen her these past 16 weeks! I think we're going to take Mercedes mini-golfing tomorrow night. She's never been and I've never gone with Robert, either! So that'll be lots of fun. =)

Well, I wanted to be asleep 2 hours ago, so I need to get to bed. Some of the pictures I wanted to add need to be rotated and the computer isn't letting me do that now, so I'll have to add them later on.

Continue praying for Mia!

With love,
Rachael <3 style="cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdt9MjDiAyycStIJjEt9LdypzB7dDQkPIYr4ut-PrI3K3ej_VPe2I9V39YW_4_mugjmyHnn0ZL_5w8JTRxkZC3UC6lXurhyphenhyphentelyc4Vdr_69DgSeuFl-RaYFTxkDqR7fhKX6qa2gh43CPg/s320/CIMG8918.JPG" alt="" id="BLOGGER_PHOTO_ID_5340763462571771570" border="0">

About 12 more hours!

Hi everyone,

What a wonderful trip my sister Renee and I had at Spirit West Coast Del Mar!! I'm so glad she was able to get the time off work - we hadn't spent this much time time together (just the two of us) in about 6 years! We were able to split our travel down to San Diego and spend the night with our cousin and his family in Azusa. He's one of the main guys in the theatrical department of Azusa Pacific University and he took Renee and I to the show he products - Once Upon A Mattress (the princess and the pea). It was hilarious!! We had a great time!

We met up with the group from the Nellis AFB Chapel down at SWC on Friday afternoon - it was so nice seeing several of my dear friends again!! I also knew several others who were there and got to know several that I had never met before. It was a good group - around 30 of us made it! One of my friends, Sierra, and her family was there. Their youngest baby girl is just 2 weeks older than Mia, so it was so nice to get my baby cuddle time in!! =)

One of the highlights for me was hearing Nick Vujicic speak. What an amazing man!! I believe he said he's 26 years old - and he was born without arms or legs. His ministry is called Life Without Limbs. I would encourage you to search for him on YouTube and listen to him - he has such a great heart and a great sense of humor, too! I was able to talk with his cousin who was there and share with her how Nick's message touched my heart. I told her briefly about Mia and her situation and she was just so sweet! She said that she and Nick will be praying for Mia. =) I bought Mia a little t-shirt that says "Nick Says I'm Beautiful" on the front and on the back it says "Jesus Says I'm Beautiful"! One of these days, my beautiful Mia will be running around wearing this adorable shirt!!

Tomorrow's the day!!! Mia is FINALLY, after 10 weeks, being transfered to the Children's Recovery Center at 10:00am! We are so grateful for the 10 weeks that we were at Sunrise Children's Hospital in Vegas, and the 6 weeks here at Children's Hospital in Oakland. The care and both places have been excellent! Just as we miss the nurses we've become friends with in Vegas, I'm going to miss my new friends here at Oakland! I'm very excited that Peggy will be joining Mia in the ambulance tomorrow! She's one of my very favorite day nurses! =)

My baby's becoming a little chunky monkey! I can tell she's gained weight since Thursday just by looking at her!! I asked the nurse how much Mia weighs and I was right - she's gained 9 ounces! She's about a half-ounce shy of 11lbs now! =) She's so sqeezable! I love it!

I must get some sleep now - thank you all so much for your love, support and prayers!

Blessed,
Rachael <3
(I'll add pictures to this blog tomorrow)

Dear friends and family, It's been a while since I've updated the blog. It's now been close to a month since I have seen Mia, Mercedes and Rachael. I can't say it has been a very pleasant time for me as I'm pretty much just focusing on work and trying to get moved. It's been pretty hard coming home to an empty house every night and wishing that I was somewhere else. However... all is not lost, there has been some good news these past couple of days!

The first good news is that the Recovery Center, Tri-Care and Medi-Cal were able to come up with a plan! In fact they were actually going to try to move Mia today but I decided it would be best to wait for Rachael to get back from her trip so Mia will be moved on Tuesday. We are very excited that Mia will finally be closer to where Rachael and Mercedes are. This will also be good for Rachael because now she can come up with some consistency in her routine.

On the job front things are still moving along. Nothing definite has come out yet but the rumors are that an ROTC instructor job at Sacramento State is the most likely spot that I will be moved to. The time frame is up in the air but we are hoping that I will be moving within a month or two. All of this depends on me getting orders so things could very well change on us. I am definitly going to miss working at my current job the 53rd TMG, DET 4. My co-workers have been very supportive and my boss has really been taking care of me. I'm going to be sad to be leaving a work environment that I was so happy to be at.

Well, to change things up a little... You probably heard from Rachael that I went backpacking a couple of weekends ago. I try to go every summer to get out into the mountains and see God's creation. There is nothing like falling asleep listening to the sound of a rushing stream just a few hundred feet away... So my two co-workers Christian and Matt as well as my old college roommate Chris and I headed to the Los Angeles National Forest for a 3 day backpacking trip. I will spare all of the details and just leave you all with a couple of picture from the trip.

Thanks again for all of your prayer and support.

Robert

Just to fill you all in...

Not to much to update. We did get some details about what happened last week, though. I'm not sure if I even wrote about that.

Last week, we got an email saying that the Children's Recovery Center was certified, only to find out that it was the wrong certification/authorization the following day. Yesterday we got more details about it (but probably not all the details). It came down to dollars and cents - Marla told Tricare how much the care would be a day and the insurance company gave a low-ball counter offer of what they'd pay and Marla just couldn't accept it.

Marla has had so much trouble with Tricare in the past and knew this wouldn't be any easier this time. We did sign Mia up in Medi-Cal (as much as we hated to do that), so that's typically a 30-60 day wait to find out of she's been accepted. They said they know she will be, so they're going to see if they can do retro-active payments so they can get Mia moved in to the CRC sooner.

I'm going to Spirit West Coast Del Mar this weekend (in San Diego), so we're hoping she doesn't get moved while I'm away because that'll cause a few more problems!!

Keep all the details in your prayers!

On another note, Robert submitted his application to teach ROTC at Sacramento, so we're waiting to see if he'll be accepted there, too. If not, we know God has something better in store for us. =)

Take care!

Rachael <3

"In other news this hour...." heehee

I'm trying to find a new home for my little bunny! As much as love him, I don't have the time to give him the attention he needs and deserves.

He's been at my parents' home in San Jose, so this is for you locals...

When I got him, we thought he was a she, so he has a funny name ... Mindy! Just last year, we found out he's a boy, but I never changed his name. haha

Anyway... he's adorable and loving, but he doesn't get much attention at all anymore, so it's best for him to have a new home.

He's a Netherland Dwarf bunny
He's about 6 years old (I think I got him in Jan. 2003)
He weighs about 2-3 pounds
He's about 10-12 inches in length (about the size of a large box of Kleenex)
He's cute and small and so cuddly!
He's got the cutest white stripe going up his face!
He's got the prettiest blue eyes, too!

We'll give his cage and belongings as well as his food, though his cage does need to get replaced.

Pass this along to your friends in the area, too!

If you're interested, email me at rachaeladamis@yahoo.com

Thanks! =)

Rachael

Just promise you're not going to make rabbit stew, or anything mean like that!! :-P

We're getting closer!

Hi all,

Just thought I'd let you know that we've been waiting for authorizations for Mia to be moved to the Recovery Center and so they can care for her there. Since the facility isn't an approved place, it takes some time to get things squared away. We just got word today that CRC has been certified, so now I guess we're waiting for the Medical Director to see if Mia does need to have that specialty care. So we're a step closer! They're saying that a realistic time frame for Mia to be transported will be next week.

Keep praying!

Rachael <3

When the cat is away.... nothing gets done!

We don't know if all of this is because our insurance case manager is on vacation or not, but it's been such a hassle trying to get authorization for Mia to get transferred!! Before, they said to give them 24 hours to get it all set up, but now they're saying maybe by the weekend they can have the authorizations for us. We'll see!! Marla said the bed is still ours, which is great, so now it's just a matter of time - hopefully it doesn't take too much longer!! We're in a good place, though - Children's Hospital Oakland is great and I basically know everybody who's been taking care of Mia now, so we can't complain! The drive is tiresome at times, but can't complain about that, either. =)

Two nights ago when I called to see how Mia was doing, I was talking to the nurse and I could hear that she was with another baby - possibly feeding little Devin "next door" because there was a lot of grunting going on, but when I asked to see how Mia was doing, nurse Linda said "Well, that's her talking!" I have big eyes, but they must have gotten HUGE because I was completely shocked when I heard it was MIA making all that noise!! She has a little bit of an airleak still, so she was breathing hard enough so air was going past the trach onto her vocal cords so she could make the noise! Linda was holding Mia on her lap so they were facing each other, so they were just chattin' away! =) After I got off the phone, I texted Robert with the number and told him to call to hear Mia, too... he couldn't believe it, either!! =)

I asked one of my dear friends who's a doctor what the cerebellum controls and he said it's basically movements of the arms and legs, motor skills, etc... The MRI that was taken when she was about 3 days old showed that her cerebellum (the back lower part of the brain) is underdeveloped. As most of you know, Mia didn't make any movements or open her eyes for the first 2-3 weeks. You should see her now!!! She's moving so much! Yesterday she did something that I had never seen her do before... She was laying on her right side and she lifted her head so she was looking at the ceiling, then she brought it around to the left side and kept it there for for about 2 minutes! That takes a great deal of neck strength! I'm so glad she's getting stronger! I'm attaching a video so you can see how's she moving now. It's just one arm because she's laying on the other one, but it's still cute! She wasn't moving like this just 3 weeks ago, so it's exciting stuff!!

The sound isn't very loud, but if you can, listen to what Renee says as well as looking at Mia... it's so cute what she does!! =)

I'm going to enclose some pictures from Mother's Day... =) I dressed Mia in a dress for the very first time! She looked so cute. I couldn't just let my baby wear jammies for Mother's Day! Enjoy!

All dressed up and no where to go!

Well, just as I expected, authorization wasn't obtained for Mia to be transferred to Children's Recovery Center. I had a feeling that would happen since we found out on Friday that the bed was going to be available and progress can't really be made over the weekend. There have been lots of phone calls from me, Robert, Marla at CRC and Linda at Children's Hospital Oakland all to each other and to the insurance company. Of all times, Mia's case manager went on vacation, but neglected to tell us about it, so it's kind of stalled things even more. Marla said that she has a feeling all of this could be resolved within 24 hours, but we'll see! We've been waiting 8 weeks to get to CRC, what's a few more days?? =)

We had a deadline of 9:30am to let the transport team know whether or not they're taking Mia, so when we got our answer, I called the hospital to let Mia's nurse know that I would be visiting later in the afternoon just so I can stay here at the house to get phone calls made if I needed to. The nurse said that Mia just got out of the bath tub and was all squeaky clean to be moved today!! Poor baby! She was getting all dressed with no where to go! =) But that's okay... she'll just look beautiful for her Mommy!! =) She loves her bath tub baths... she especially loves getting the shampoo massaged on her head!

I'll be updating you all as soon as we have a clue as to what's going on!

Oh... another thing that we thought was for sure is that we're most likely not being moved to Beale AFB! We actually don't know where we're going... we're still waiting for orders. Robert was suggested jobs teaching ROTC at Berkeley or Sacramento, but he'd have to apply and be accepted, and we've heard that can be a long process. We don't know what God's plan is for Robert's job, but we're continuing to trust Him! You can keep that in your prayers, too. =)

One day at a time.... =)

Hope all you mothers had a wonderful Mother's Day yesterday! I sure did! =) I'll add pictures later on...

Rachael <3

Good news!!!!

Hi everyone,


Today we got some good news!! The bed is available in Campbell at the Children's Recovery Center!!! Marla (the director gal - don't know her exact title) wants Mia there on Monday at 1pm!! The charge nurse at Children's Oakland set up the transport team, so everything is good to go. They'll be picking Mia up at 12pm ... we're excited!



Please keep the situation in prayer, though. The CRC isn't a network facility, but our insurance said that it will be covered as a non-network facility. Pray that all the information we've received is accurate and that everything will go smoothly - and will be covered!!



I've gotten a lot of great expirence taking care of Mia and the nurses have been great with allowing me to do a lot of the care. When I changed her trach several weeks ago (I still have yet to do it again), several of the nurses wanted to watch because they had never changed one before. Well, today I did something again that several nurses had never done themselves - I put in a new g-tube! Mia got her MIC-KEY today! It's a low profile g-tube which means that you can unhook the feeding tube from it so there's nothing "hanging" out from her body, so it's nice!! (Pictured is the old g-tube disc - you can click on the pictures to see them bigger. Mia is getting chunky!!)


The site was pretty nasty looking, though. I was just hoping I wasn't going to pass out!! I can look at the trach opening fine... the g-tube site gets to me a little bit, though. I just need to not think about it too much and I'll be fine. =) The nurse practitioner and nurse practitioner student guided me through the change. They took out the old g-tube, and I put the new one it! It was very simple ... I'm glad I got that experience. =) Mia's nurse said I should get on the pay roll because I do so much. haha I'm just glad they allow me to! =) (Pictured: Mia getting her bath! She loves them!)

Another bit of good news... Robert and I get to see each other for our anniversary at the end of the month!! He booked his flight today, so I'm glad. These two weeks have been long enough without seeing each other ... it'll be great to be together again! Last night, Robert and I were on Skype (video chat online), so Mercedes was able to see her daddy and give him (the camera) kisses, etc. I was also able to show Robert some video that I've taken of Mia while he's been gone. He's amazed at how much she's moving now! I didn't realize how much she changed these two weeks just because I see her everyday. It's pretty neat that Robert can see the difference. Mia is moving around and responding like a 1 month old now ... it's pretty cute to see her! She's a lot more interactive now... She's too cute. =)


A few prayer requests:
-Healing of Mia's body
-Good health for Mercedes and my Mom - they both have a really bad cough and chest congestion, but are doing a little bit better
-Continued good health for myself so I don't get Mia sick
-My milk supply - it's starting to decrease quite a bit. Pray that I will get the rest my body requires
-Robert ... he's getting pretty lonely and missing his girls - and we miss him, too!
-Smooth transfer to Children's Recovery Center
-Insurance coverage
-My friends who suddenly lost their precious almost-5 month old daughter this week

Thank you so much for supporting our family in prayer! We love you all!

God's blessings to you!

Rachael

Please email (rachaeladamis@yahoo.com) me with your name and location if you're praying for Mia!

Please keep my friends in your prayers...

Please keep my friends, The Feldman's, in your prayers. Their precious baby girl passed away last night during her nap. Gabriella was almost 5 months old. They're assuming it was due to SIDS (Sudden Infant Death Syndrome). They have an older son, Jake, who is 4.

Robert and Kenny worked together at Nellis AFB and we met them when Jake was just a little baby. I remember when Mercedes was born, Tina didn't even want to hold her because she wanted a girl so much! Gabriella is such a blessing - they tried for a long time to have another baby and they were overjoyed when they found out they were having their little girl!! I never did meet Gabby - they moved to another base in Ohio last summer.

Please keep Kenny, Tina and Jake in your prayers.

Much love,
Rachael

Happy May!

Hi everybody,

Not too much has happened since I last wrote. The hearing test did happen that following afternoon, but the doctors didn't want to have to sedate Mia, so I held her during the test (which typically relaxes her enough to fall asleep), and she was sleeping until the tech attached the probes to her forehead and ears and had to put the little ear phones in her ears... then she was wide awake! Even with her very slight movements, it was still too much for the test to work, so it wasn't able to be completed again. The tech said it's not a big deal if we're unable to get the test done before she leaves for the Children's Recovery Center. If we absolutely need the test done, I'm sure there will be a way to have it done there.

One bit of excitement that happened Thursday evening was Mia's heart rate dropped and stayed down for about 15 minutes! Mia had been in her swing and I was just talking to her and we were enjoying each other. Nurse Linda got Mia's feeding going and then she went on her dinner break. About 2 minutes after she left, I noticed Mia's heart rate went down into the mid 70's on the monitor and I didn't think much of it because at times she Brady's but brings herself back up in 2-3 seconds. But this time, her heart rate wasn't going above 80 at all. Her doctor, Nick Mickas was right there when it happened, so that was good!! She had quite the flurry of doctors and nurses around, which was nice that they were actually thinking something of this. Two neonatologists, one resident, one respiratory therapist, the charge nurse, as well as 3 other nurses were all there trying to figure out what was going on. The first thing they did was get Mia back in her bed. Mia was breathing normally on her own; her oxygen saturation was at 100%, she was breathing room air (21%); she was pink and didn't have a care in the world... the only thing different we could think of that she got a bolus gravity feed, so all her milkies went in her tummy very quickly (in about 4 minutes), instead of being fed with a feeding machine which makes the feeding take about 45 minutes.

They think that her tummy got too full too quickly, and the pressure of her tummy could have put pressure on some nerves which could have "tickled" her heart. They ordered an xray to be done because they thought maybe her trach was sitting too low, but as soon as the xray tech got to Mia's bedside, her heart rate shot right back up to where it should be because the RT rolled up a little blanket and put it under her shoulders! Not totally sure why that did the trick, but I'm glad it did!! =) Now the doctor ordered Mia's feeds to only be done my the feeding pump at 25ccs over an hour to see if her heart rate Brady's again. If it doesn't, they're going to assume it happend with the gravity feed.

Yesterday I woke up feeling much more congested than normal, so I wasn't sure if it was just really bad allergies or if I was getting sick. I called the hospital and told them that I didn't want to take a chance, so I never saw my baby yesterday!! I came back down to San Jose (I was staying at Robert's aunt's home in Castro Valley) and I'm also going to stay down here today as well. It works out great, though, because the rest of my family was invited to a wedding today, so I'm able to stay home to watch Mercedes while they're there. =) I'm feeling fine today - it just feels like my typical sinus issues, so I'm not sure that I ever was sick, so I should be able to see my Mia tomorrow! =)

If you're healthy, please come visit Mia!! I don't have to be there for you to visit ... visiting hours are from 8am-8pm. I'd love for you to meet her if you haven't ... and I know she loves the company! I'm so glad there were volunteers yesterday because they were able to hold Mia since I wasn't able to! I'm sure someone will be able to hold her today as well. =)

Robert's in LA with some buddies going backpacking - at least I think he's there! He wasn't sure if they'd have cell phone reception where they were, so I haven't heard from him, but I'm sure they made it. =) They're planning on being back in Vegas tomorrow evening. I'm glad he's able to do this - he needs time to get away! =)

Hope you all are staying healthy and not being exposed to this crazy swine flu!

Much love,
Rachael
My baby is going to be 3 months old on Monday!! I can't believe it!!

Please email (rachaeladamis@yahoo.com) me with your name and location if you're praying for Mia!