Disneyland for the First Time

Now that the RSV season is nearly over and Emma got her last Synagis shot of the season we were able to seize the opportunity to take our girl to Disneyland for the very first time. Our friend Ajay, who works at the park made it possible for us to go. He also made the day very special for us; as he bought Emma her first mouse ears. We had such a great day filled with wonderful memories. The pictures speak for themselves but, of course I will narrate for you all.

Thank you Ajay for making these memories possible.

Emma and Ajay at the Magic Kingdom..Ready for some fun.

Emma's new Ears...

Waiting patiently for the Disneyland Railroad. Emma was so excited to see the train coming down the tracks. She just smiled and giggled with glee. She would look back and point to make sure that we saw the train was arriving. Emma loved hearing the whistle blow. What a great experience!

Listening for the train....Can you hear it???

Emma and Grandpa Jack on the train together...She loves her Grandpa and he loves his Bug...

Visiting Winnie the Pooh...She signed "think think think"(which comes from My Friends Tigger & Pooh the TV show) the whole time we were within visual distance. We didn't get too close though because Emma is still afraid if the BIG head and costumed characters.

All together at Disneyland. (From Left to right) Alissa, Grandma Julie, Emma, our friend Melinda (and nurse for the day), Grandpa Jack, & Mark. The day was absolutely perfect. It was filled with so much fun as we watched Emma explore and experience the magic of Disney first hand.

We all rode the Casey Jr. Train together, sitting in the Monkey Cage car. Seeing the excitement on Emma's face was thrilling. She kept signing train and smiling with such joy. This was a great ride for her and we all loved it too.

Sitting all by herself on the chair in Toontown. The pride she has just shines through her smile; like she's saying look at me I'm a big girl and I'm at Disneyland.

Before we went to Disney's California Adventure, we ran into a few Princesses. They were so pretty and sweet. Emma really enjoyed meeting them. Check out the way Emma is looking at Princess Aurora. I love it!!!
Emma met Snow White who was so amazing. After giving Emma an experience of a life time by the way the spoke to Emma; she left the line of children waiting to see her and walked us over to meet her friend Cinderella. This was so special and will forever be a favorite memory of mine. She said, "Cinderella, I want you to meet my special friend Emma isn't she just beautiful?" I was overcome with emotions and started welling up. It was as if they were talking about Emma like they were old friends and showing off their own daughter. I still can't believe what an impact it had on me.

Mommy, Emma, & Cinderella. What a beautiful memory the Princesses gave us. One we won't soon forget.

We saw Playhouse Disney Live on Stage. It was Emma's first time seeing a production like that. After she understood that it was like watching TV and that they weren't going to come up to her she started enjoying it. After a few minutes she waved to them continuously. Then asked for more when it was all over. This is a picture of Emma watching the production.

Melinda and Emma danced to the music from the nearby parade that was going by. Emma loves spending time with Melinda. They are great pals.

Daddy and Emma cooled off in the water park area in the Bug's Life section of DCA. Apparently, Emma loves getting wet. She and Daddy had a ball running through the water. It was a great day for it too as it was a very warm day.

Emma loves to play in the water. She would sit at the sink and run her hands in the water for hours if she could. She really enjoyed this time and I think it was pretty special for Daddy too.

On Daddy's shoulders...Emma got a big kick out of her new vantage point. What fun she had being so high up. Even though she was very tired and was ready to go home, she squealed with excitement when she was up there.

Mark & I spent a little time in DCA together before heading off to our hotel. You see the day at Disneyland was the first day of a mini vacation for us. We spent Friday and Saturday nights at the Embassy Suites as a getaway together and Emma went home to be with both sets of grandparents. It was a wonderful and a much needed break from reality. We had a nice time playing RACKO (a fun card game) and just chillin' out. We are SO THANKFUL for our parents and our nurses.

Thanks Uncle Eddie

Emma has not been very motivated to use her walker since getting out of the hospital 3 weeks ago; until now, thanks to Uncle Eddie and his new custom table he made for Emma. Now she stands and plays at the table for short increments like a big girl. She is so cute and proud of herself. Thanks Eddie!

Easter Pictures

The Lord blessed us with a wonderful homecoming gift. About a month ago our night nursing hours were cut, making it difficult to get a full night's sleep when we had a night nurse. Well, He must have know just how exhausted we were because Monday night we found out we were going to be getting our hours reinstated and now sleep is a reality. We are finally catching up and I must say that sleep is wonderful, and God Is So Good.

It has taken a few days to get our routine back but we are now in the groove of being home so I can get blogging again. When we got home from the hospital the Easter Bunny had visited and left a little basket for Emma. Here are a few pictures of Emma and her Eggs. She has learned to open them and loves to find little prizes inside. Of course the little prizes are for Mommy & Daddy since she doesn't eat candy.

Look What I Found...

Bug Eyes...or.. are they Egg Eyes?

What a Silly Girl.

Just keep Smiling..

It's Great to be HOME!!!

Yes we are home. Emma was ready to be discharged yesterday but came down with croup. She sounded like a baby seal, so her Doctor had us stay last night just to be safe. She came in early to check up on Emma this morning and was pleased to see she had improved since the day before. We got our discharge papers and came home. Emma, Mommy & Daddy are all so happy to be home together again. This was an incredibly long 2 weeks but it was a wonderful Easter present to be home as a family. We are so thankful for Christ's sacrifice for us and for helping Emma recover from being so sick. Emma is still trying to regain her strength and is slowly improving her stamina. Being sick was very hard on her this time. When we got home she smiled and lounged on the couch before taking a nap with Mommy and Daddy. Yes, being home is wonderful. Thank you all for your continued prayers and support through this last hospital stay and always. We were comforted in knowing we were thought of and prayed for.

Let me out of my cage...

I feel better I promise!

Sittin' pretty in her crib with her piggy tails

Emma really took to holding onto the rails of her crib and asking to get "up!"

Looking out the window wanting to go outside, at least the sun was shining in the room and warming our hearts.

Ok, No more pictures Please, Mommy. The Paparazzi must go...

Happy St. Patrick's Day From the Hospital Leprechaun

Well today marked yet another holiday that we celebrated with Emma in the hospital. Weeks ago we purchased a St.Patty's Day dress for Emma to wear today so, since she was up for a bath we dressed her in her shamrock dress and danced the jig. (just kidding about the jig part, though she did smile for the camera) Last night we were transferred to the pediatric floor, which is a positive step towards home. So far the doctors still don't know what caused Emma to be so sick and we may never know, which is very frustrating. Today her feeds have been increased with the hopes of getting her closer to her home regiment. She has tolerated the change so far and hopefully she will continue to tolerate the increase tomorrow. Emma's next hurdle will be to come off the oxygen that she is requiring during the day before we can go home. She normally needs it at night and may continue to for a while. All in all it has been a very hard and tiring 8 days, but the light of home is coming closer. Thank you for your continued prayers and support.

Yesterday, Today & Tomorrow

Sorry about the delay in update, but there has not been much to report on Emma as of late. The Doctors still don't know exactly what is making Emma sick. More tests have been run to gather more information and try to put more pieces to the "Emma Puzzle" together. She has been very irritable and agitated over the last couple of days; which is an improvement because this means she has been awake more through out the day time. Her temp has been close to normal since yesterday, only having 2-3 spikes in temp since then. They are usually at night or early morning which is causing her to be uncomfortable and not sleep as well as she needs to. Because of this, she was given Chloral Hydrate which takes the edge off and relaxes her, so she can get good healing rest. It acts a bit like Benadryl and Tylenol together. Her feeds were started again yesterday but she is slow to tolerate them because her gut hasn’t been pushed to work since we got to the hospital a week ago. It is very hard to see Emma this way. I feel so helpless, especially when she feels so sick and grumpy and all I can do is be patient and love on her. I just wish she was healthy again and we could get back to living life and having fun together as a family. We are still in the PICU and don’t know when we’ll get to go home. We (Emma & I) have really missed Daddy, as he has been home sick and has had to stay away to get well ans prevent any further trouble for Emma. Thank you again for your prayers and kind thoughts. You all are such wonderful support.

Below are a few pictures of Emma and some of her visitors.

Emma is half watching her DVD player and half Sleeping...

She is quite talented, as when I would try to move the DVD player thinking she was asleep she would grab my hand to keep the DVD player there.

Silly Girl....

Emma getting loves from Grandma Julie

Reading Curious George with Nana

A Visit from Coco, a pet therapy dog...

Oh what fun, one of Emma's first smiles in a couple of days.

3/12/08

The Infectious Disease Doctor came in today to see Emma. After looking at the test results, he changed her antibiotics again and is hoping for an improvement within the next 48 hours. It is now a possibility that she could have a pneumonia type infection. So, hopefully she will improve with these new meds. If no improvement is made then the antibiotics will be stopped so we can get a culture that has not been treated with antibiotics to see if anything else shows up. Yesterday she had an echo cardiogram and it showed no infection of Emma's heart valves which is a huge blessing because that could have the potential to be life threatening. Praise God that Emma's heart is doing well through all of this. She continues to spike fevers close to 103 degrees so she is getting Tylenol and Motrin around the clock. Emma is still exhausted and is sleeping about 19-20 hours a day right now. We have been reassured by Emma's doctor that he is seeing small improvements and is looking into other treatments to continue to help Emma heal from this. We thank you for your prayers and hope that Emma recovers soon.

3/11/08

Today the doctors are running more tests on Emma. They are a bit concerned and consulting infectious disease. She is having an echo, trach cultures, blood cultures, and some other things. Despite being on Tylenol and Motrin around the clock, she is still spiking temps up to 104. Hopefully they will be able to figure out what is going on soon.

Update for Monday 3/10/08

Emma is still not feeling well. This morning her fever spiked up to 104.2 again and we were able to bring it down with cool wet rags and a lukewarm bath. At this point it looks like she has a bacterial infection, but we don't know much else. We will be in the PICU until at least tomorrow and then possibly get transferred to the Peds Floor. Emma has been sleeping a lot and continues to have a horrible cough. It is hard to see Emma so miserable after she was doing so well. Thankfully, Grandma Julie was able to spend the night with Emma at the hospital so Mommy could get some rest. We were also pleasantly surprised to come home to a clean house as Nana and Papa straightened up our house and did some laundry while we were gone. We are so thankful for our parents.

Emma resting on Mommy in the PICU

Last Night and EARLY This Morning...

After a great week, Emma suddenly had a turn for the worse last night. While checking on her before we went to bed, we discovered she was running a temperature of 101.8 degrees. We gave her Tylenol and brought her into our room so we could keep a close eye on her; after she started vomiting and was having a bit of trouble catching her breath. The night was very rough as she was having more and more trouble breathing and keeping her oxygen levels above 90 with the support of 100% oxygen (she normally sats 98-100 when she is healthy). Her fever spiked to 105.7 degrees and we did our best to bring it down with cold wet rags, without much success. After reaching the on call Doctor at CHOC at Mission, the decision was made to call 911 and transport Emma via ambulance. She was admitted to the Pediatric Intensive Care Unit, where they ran a bunch of tests. She is still consistently running a temperature over 100 degrees and has been given Tylenol & Motrin to try to bring it down and help her discomfort. So far the only thing we know is that her white blood count is elevated and that she is pretty sick. She is requiring oxygen support and IV fluids. We are waiting for additional test results to come back. We are bracing ourselves for an extended stay. Please keep her and us in your prayers as we wait on the Lord to give the Doctors and Nurses the wisdom to heal our little girl again.