Long Awaited Photos

I'm trying to be a big girl, but I forgot to add the food.

Family Photo at Thanksgiving

Santa Claus and Choco Bear at the CHOC Toy Ride at Mission.

I'm Sleepy.

A Happy Thanksgiving

I am sorry for not posting an update sooner. Emma came home from the hospital on Tuesday night and was able to join us at home for Thanksgiving. It was her first big holiday out of the hospital and it was great. We spent the afternoon at Nana and Papa Ford's house. There were 13 of us. Emma tasted a couple different things and liked them. She really liked gravy because of its saltiness. She kept licking her lips. In the evening we headed over to Uncle Braden and Aunt Kelly's house for their first Thanksgiving at their home. It was nice to be able to spend time with both sides of the family. The rest of the weekend we just enjoyed spending time with Emma at home. We took her to the park today to go on the swings. She loves being outdoors. I promise to post some new pictures soon.

A Long Winter

It looks like we are in for a long winter with Emma. She was admitted to CHOC on Friday again with pneumonia after only being home for 12 days. She was doing so well and then started throwing up again constantly on Friday. As we expect to be back at the hospital a few more times before the end of winter we are trying to get a porta-cath to make setting up IVs easier for Emma. Since she has spent so much time in hospitals, her veins are shot and it can take up to 10 pokes to finally get a good one for the IV. This would be a long term IV starter surgically placed under her skin. They are used a lot with cancer patients. We are crossing our fingers that she can be home for Thanksgiving. The only holiday she has ever been home for is the 4th of July. We would be very thankful if she wasn't in the hospital this year.

Home

Sorry for the delay on an update. Emma got home from the hospital last Monday and she is doing well and is very happy to be home. We got an amazing new camera on Friday after dropping our last one. Here are some new pictures.

Emma at 16 months

Emma and Mommy

Emma sleeping on Auntie Katy

Emma and Riley

Fun Pictures

Emma and her friend Riley.

Our Frog Princess!

Emma in daddy's hat.

Family photo at the pumpkin patch.

Still at CHOC

Today marks a week back at CHOC. Emma is feeling better and is acting more like herself, but the doctors want to run some more tests. It looks like she will be there a few more days. They want to check and see why she is not growing as fast as she should be while she is still there. She also had a low heart rate last night so they would rather be extra cautious.

Back at CHOC

On Friday night we took Emma back to the hospital. During the day she had thrown up 12 times and couldn't keep down a syringe of water. Alissa has not left her side in 3 days. In the past we could leave Emma when she went to sleep, but now she is aware of her surroundings and wants mommy whenever she is awake. Yesterday she was finally able to tolerate some pedialite in addition to the IV fluids. She has pseudomonis again which is some sort of infection or bacteria from her trach.

Last Weekend

Last weekend we took Emma to Chance's 6th birthday party at a local park. She had a lot of fun. It was a pirate themed party that included a pirate ship bounce house. We got to catch up with a lot of people from Healthbridge. Emma went on the swings for the first time and really loved it. . We also took Emma to the pumpkin patch for a photo op. Here are some pictures from the day.

15 Months

Emma turns 15 months old on Monday. I cannot believe how fast it has gone. She is progressing well, but we wish she would gain weight faster. She loves to play peek-a-boo, blow us kisses, read books, and watch Playhouse Disney. We wish she could have joined us at the CHOC Walk on Sunday, but it would have been too much for her. It was a lot of fun, but you felt like a heard of cattle being driven from one location to the next. They estimate that there were 16,000 walkers. We ran into a lot of people we knew, including our friend Chance from Healthbridge. He was recently adopted and lives near our house. We will be attending his birthday party this Saturday. This month we finally started to receive home nursing for Emma. We qualify for 20 hours a day, 7 days a week, but there are not enough nurses to staff it. We are leaving weekends as optional in case we need a break. Alissa has benefited the most from the home nursing as she has been able to get uninterrupted sleep a few nights a week.

Emma's Entourage

This Sunday at 7:00 am, a group of 20 will be participating in the CHOC Walk as Emma's Entourage. As a group we raised just under $4000 for CHOC Hospital. It should be an exciting event. We will post some pictures from the walk on Monday.