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.

The Week Leading Up To Yesterday

This week we had some fun activities. First we went to Nana & Papa's house so Emma could practice her walking skills with her physical therapist, but she ended up taking a leisurely bath in Nana's sink. Oh what fun...

Emma loves playing in the water

Lounging in the sink

Next we bought bikes and a trailer so we could get out and enjoy the bike trails as a family. This has been so great for us as we not only spend time together and getting exercise, but we will eventually save money on gas...as Daddy now rides his bike to work every day

Emma loves sharing her new trailer with her pal Pooh Bear...

Here We GO!

Yesterday we went on a nice bike ride to the lake to feed the ducks. The weather was warm and breezy as we enjoyed being out side. Our bikes have become the best investment for our family because we can actually get out of the house with out being in crowds of people. Sitting by the lake watching the ducks

Eskimo Kisses

A family photo before riding back home

Watch Her Go...

Well it arrived...

Emma's new custom walker arrived just before her physical therapist

knocked on our door for her therapy session.

We set the walker height and fastened her harness and watched her go.

She was so proud of herself and smiled the entire time.

Emma has a bit of practice to walk through while she learns how

to use her walker before it gets easy.

But I think she's gonna do great and will really enjoy her new freedom

and view of her world.

Emma's First Steps...

See ya later...

She's Back...

It was an amazing thing to see our little one walking with her walker for the first time. What a special moment it was. Emma was out walking around just when Daddy pulled up for lunch and was able to share in this moment too. We have high hopes for our girl and we can't wait to go walking as a family once the weather warms up and the RSV season ends.

Getting Outdoors on the Weekends

Emma Loves Trains...

So we took her to the Irvine Park to ride the Choo-Choo Train.

She had such a great time and would have loved to have

never gotten off the train.

She is still signing "train" letting us know she wants to go on it again.

Sittin' on a railroad tie..

All Aboard the Choo-Choo Train!

Waiting for the train to go, go, go...

This Weekend we went to the Heart Surgery Reunion Party.

It was so nice to see some of the staff that cared for Emma before and after her heart surgery. Emma had fun seeing the therapy dogs, doing "Spin art" for the first time and making crafts with Mommy and Daddy.

Doing Spin-art with Daddy...

Showing Mommy (and the camera) her finished product.

She was so proud, and so are we...

Hearts and Crafts with Mommy & Daddy

After the Heart Reunion, we went to have dinner with the family at Uncle David's restaurant Jalapenos Grill. We had a nice time eating yummy food and spending time with the fam.

Hugs from Nana & "Ah-pa" Papa

The Dinner Crew...

Eddie, Katy, Karen, & David

Alissa, Mark, Emma, Dad, & Mom

He always provides...

We have been waiting about 3 months for a walker for Emma. She was fitted for the walker but, we later learned that Emma had been denied for the actual walker. We were frustrated and frankly, a bit confused by this. At the end of January our friend Melinda, told us that her nephew had outgrown his walker and was offering it to Emma. We were elated. When Melinda brought it to us it was a perfect fit. We bought the sling, which is a special accessory to help support Emma when she is using the walker, and we are now waiting for it to arrive.

Well, a funny thing happened yesterday. After thinking we were denied for a new walker and receiving a walker from our friend, we received a call from Emma's Physical Therapist. He said that the company that manufactures and supplies the walker Emma was fitted for had called him; stating that Emma's walker had been built and was ready for delivery. We have no idea how this happened because we had all but given up on the idea that Emma would get "her" walker, except that God had His hand in this. Now we have options for a walker which we NEVER expected. After all of the ups and downs of not knowing, it just goes to show us that GOD is so good and He always provides.

Emma's new walker will be delivered on Monday and when we get her in it; I will take lots of pictures and post them as soon as I can. We are so exctied.

Happy Be-lated "I Love You" Day

Since Emma had just been discharged from the hospital a couple of days prior to Valentine's Day; we decided to lay low and take some pictures for Daddy's Gift instead of going shopping. Emma loves making faces for the camera.

Daddy loved the outcome of the photo-shoot. Mommy did too...

I love you SO MUCH!!!

Sitting in the grass, soaking up the suns warmth.

Emma loves being outside.

MMMuah!!! S.W.A.K.

Happy Valentine's Day!!!

Emma's Home Again...

Despite our precautions to keep Emma healthy she still caught a bug.

And after several tests the results showed that Emma has a respiratory infection that caused all the trouble. Emma was put on two strong antibiotics and started feeling better rapidly. We spent 4 days in the hospital and were discharged today. We all are very happy to be home.

We're hoping we can keep Emma healthy and out of the hospital.

It was nice while it lasted

After 3 months of being out of the hospital, we had to take Emma to CHOC last night. She went from being her normal happy self yesterday, to lethargic and pale within minutes. From 3:30 until around 8:00 she was constantly throwing up even though she had nothing in her stomach. The hospital is completely full right now, so Emma would have had to share a room with someone else on the pediatrics floor. The doctor opted to put Emma in the PICU last night so that they could run some tests. If she was sharing a room, they would not have been able to run the tests. At this point, we only know that she does not have RSV (PTL!). I will post an update once we know more.

Here's The Latest...

Our apologies for the lag in updates, but with the RSV season in full swing, we have been staying home and trying to keep busy. Not much is going on, so here's the rundown.

Emma has had several follow up Dr. visits and so far she is doing well. She weighs a bit over 17 pounds and is 28.5 in tall. We are still waiting for her to get to a minimum of 20 pounds before the Doctor will consider decanulating Emma's trach. In early March, Emma will have a Rigid Bronchoscpoy to remove scar tissue from her trachea and have her eye duct irrigated so it will drain properly. Yea! No more teary left eye. Please keep us in your prayers as these procedures require Emma to be under anesthesia while in the operating room.

Our dear friend Melinda's nephew has graciously given Emma the walker he has out grown, which she desperately needs. We are so excited for this, it may need some modification to for it to fit her, but we can't wait to see our girl standing up right and walking with this assistance.

Emma is also becoming more and more verbal. She had found her tiny voice behind her trach and is working hard with her Speech Therapist to form her lips and mouth to say words. This is still a challenge so, she interchanges signs with the few words she can say. We're so proud, our girl is BRILLIANT! Emma is starting to be able to say 2 syllable words like: Momma, Dadda, Ah-Pa (Papa), uh-oh, "ah-ha!" (thanks to the Piglet Movie). She can also say Up-Mom, no, yeah, & nan too. Our house is not yet noisey but it is getting there.

Emma has grown quite fond / obsessed with the Winnie the Pooh Series. She loves to sit and watch the movies while holding her stuffed buddies from each movie. She is so fun to watch as she interacts with the characters. When special songs come on she dances, wiggles and marches with her legs to the the music. We love seeing her engaged with activities she enjoys. She has developed quite the memory too. She often reminds us about things we've said we're going to do or that she wants to do. It's so wonderful that she can communicate with us. Emma often shows us what she wants at the moment or as she remembers doing things hours or days after the events. She still asks to go see Santa and the Christmas Tree at Fashion Island when we take her to the train.

Below are some recent pictures from the last month.

Calling Dr. Emma

Emma loves to pretend

When Mark was sick we all wore masks to keep the germs in check.

Emma thought this was a great game.

laughing & playing on a rainy day

Another boo -boo on Emma's Chin-ey Chin Chin...

More evidence of how active our girl really is.

Emma loves Piglet...She holds him tight when she's watching PIGLET'S BIG MOVIE...
It's so cute watching her give Piglet loves. What a sweet girl she is...