Answer to Prayers

We just received a call telling us that Emma has cleared waivers to continue to receive Medi-cal. For the past 2 months, we have not had Medi-cal because Alissa and I made too much money. When the state realized that Emma was no longer in the hospital, she was no longer able to qualify on her own. When we lost her Medi-cal, we lost our nursing hours through the state. We received a couple hundred hours of nursing through another program called Regional Center, but it was only enough to pay for our night nurse. We used our last 10 hours last night. When we said goodbye to our night nurse this morning, we were expecting to be without nursing for up to 30 days. Everything with the state takes forever. Alissa has been going back and forth with Medi-cal and SSI for about 6 months. Last month a representative from Medi-cal finally came out and assessed Emma. She determined that Emma was medically eligible to continue to receive her benefits without making us pay $3000 a month in shared cost. They wrote us a letter on August 24th telling us this, but we did not receive it until yesterday. After 1 more phone call, someone from Medi-cal was able to push our paperwork through and we will be able to get all our nursing back. Thank you for all your prayers.

It Was Inevitable...

Now that Emma is mobile we have experienced a new milestone...A rite of passage so to speak. Even though we baby proofed the house last weekend, Emma got her first boo boo.

She only cried for a second, but it was still so sad to see her experience the shock of bumping her nose for the first time. After Mommy got her cleaned up we took pictures for the memory books. I have to say she looks cute with her boo boo. And of course when the camera came out, the tears went away and her smile reappeared.

Cars, Birds, Fish and Spaghetti Oh My....and a Word...

Today we took Emma to the Long Beach Aquarium. This was Emma's first time at a tourist attraction. It was such a beautiful day, so we packed up all of her medical equipment into Mommy's new pathfinder, popped in the movie CARS into the DVD player and off we went. Emma enjoyed seeing the ocean as we traveled up Pacific Coast HWY and stopped off at Starbucks to visit Uncle Eddie before heading to Long Beach.

One of the first exhibits we visited was the aviary where the Lorikeets are housed. We bought nectar to feed them. We all enjoyed this experience very much. It was great seeing Emma's expression when these colorful birds would land on our outstretched arms to take a drink. Emma was so tickled by these funny little birds...

Next we visited the fish tanks both inside and outside. Emma was is awe of the fish swimming over her head and all around her. She kept pointing at them and smiling. These tanks were so huge and the fish were magnificent. Emma enjoyed watching Daddy touch the sharks and manta rays...while Mommy took lots of pictures.

On our way home, we took Emma to The Old Spaghetti Factory for dinner, a place dear to our hearts. We had our first date there. Emma experienced the fun of Spaghetti while we enjoyed our meal. What a hoot she was playing with her noodles.

And last but definitely not least Emma gave us a great surprise this morning. While we were getting ready to leave the house for our outing, Emma was playing on the floor just crawling around and making a bit of noise. Suddenly, Mark & I looked at each other and said, "Did Emma just say what I think I heard?" Yep, sure enough Emma said Momma for the first time. She wasn't calling to me, but formed the correct syllables and made the wonderful sounds. Of course, she didn't repeat it again for the rest of the day. Maybe tomorrow I'll hear that word again...

Daddy with his Girl...

Pretty Bird...

Hey Mommy has one too...

Those birds are so hilarious...

Daddy showing Emma the sharks, what a special moment...


Here Fishy, Fishy...


In the sea lion tunnel...


Ooh, Noodles are very entertaining...

Three Years Strong

Today we celebrate our 3rd wedding anniversary. It's not just a reminder of the day we devoted our hearts to each other, but a celebration of our love and perseverance through the stretching and character building God has blessed us with over the last three years. Through the fun and tough times we have grown closer together no matter the situation. Our love for one another grows stronger everyday as we learn to appreciate even the smallest of milestones.

We are truly blessed to have each other.

It's Official!!

Emma is Crawling...

Emma is really coming to love her new found freedom. Mobility is a wonderful thing. She is so proud of herself when she gets to her goal destination...and frankly, so are Mommy and Daddy.
She is getting stronger and faster everyday...pretty soon we're going to have to run to keep up with her. Stay tuned for pictures of this milestone that we have eagerly been waiting for.

Staying Cool..in the Pool

We have discovered that Emma is a water baby. She has really come to like bathing and loves to tell us that she wants to take a bath. She officially earned her water wings, when we recently bought Emma her very first blow-up pool. Since she can't go into a regular community pool because of her trach and G-tube we have been able to fill it up with a few inches of water and assist her in the fun. Unfortunately our yard doesn't accommodate a bigger pool, so mommy and daddy have to take turns in the mini pool. All in all, Emma loves it and its a fun way to stay cool in this terrible heat.

The first time in her new pool...

Splashing is so fun!!!

Daddy's Bathing Beauties

Refreshed after swimming, check out my flowing locks

Emma the celebrity

Emma has been chosen to be the face of CHOC this holiday season. She will be on the CHOC Christmas card and fundraiser letters. We are so excited about this. Yesterday, we had representatives from the CHOC Foundation For Children out to our house with a professional photographer to take the photos. They transformed our living room into Christmas time. Emma loves the camera, so it was very natural. We cannot wait to see the pictures.

Results of Emma's Bronchoscopy

Well it seems as though Emma is not ready for her trach to come out yet. This news is disappointing but totally understandable. All we really want for Emma is for her to be healthy and have a strong airway plus happiness and growth. We were told that we would re-address her trach removal when she gained 3 more kilos, which is about 6 and a half lbs. This will probably put her right around 20 lbs. Her Doctor did explain that she has some scar tissue in her trachea that will need laser surgery before her her trach comes out too, and he would like to try to wean her to a shorter "non-custom" trach tube after the lasered areas have healed. So our task of weight gaining continues as we move into a new season with her. Emma is so active, which is wonderful, but she burns more calories than she consumes, making it hard to gain weight. Don't we all wish we had this issue....

On a lighter note, we had a MARVELOUS day today after the bronch was completed and Emma was discharged. Mark and I already had the day off for this procedure, and since it's summer and we were close to Disneyland we decided to take advantage of the day. We took Emma to Downtown Disney for the 1st time, for lunch and a bit of outdoor shopping. Emma got a goodie from the Disney Store for enduring the last two days like a champ. She really enjoyed people watching and saying HI to everyone she met.

Emma has also taken to crawling a bit more than a few weeks ago, although she still has a long way to go before she is fully crawling. She is now what I would call mobile and she really is enjoying her new found freedom and mischevious explorations.

Watch out world here she comes!!

Daddy's A Little Upset

So we woke up at 4:45 this morning to get to CHOC in Orange before 6:00 for a scheduled 7:30 bronch and Upper GI study for Emma. We arrived at 5:45 and proceeded to the short stay unit. At 7:30, the GI Doctor was there to look at her stomach and esophagus, but the pulminologist was no where to be found. The first part was going to take 30 minutes, so we hoped that he would be there before the first doctor finished. Well, at around 10:30 we received word that the doctor needed to reschedule. Needless to say, I was more than a little upset. After we were discharged we stopped by the pulmonologist's office and asked to see him. He was sorry for the mix up and asked when it would be good to reschedule. As I had taken 2 days of vacation in anticipation of Emma possibly coming off the trach, I asked if it would be at all possible to reschedule tomorrow. He graciously agreed to reschedule tomorrow morning at 8:30 on his day off. It is a bummer that we have to do this 2 days in a row, but I am happy that we will at least get the chance to see if Emma is ready to be taken off the trach. Please be in prayer again tomorrow as we have Emma's bronch.

This Monday...

Dear Family and Friends:

On Monday, Emma is scheduled for a bronchoscopy & endoscopy at 7:30 am. These are tests to see if her airway is strong enough to get her trach out and to see if there anything wrong with her Esophagus, that might becausing her to vomit so frequently. We are hoping for the best but not setting our expectations too high. Please keep our little girl in your prayers as she goes under ansethesia and that the findings are encouraging.

Thank you,
Alissa, Mark & Emma