Sunday, June 14, 2009

Julie Update & Fun with Cousin Miles!

As Julie's recovery from the double lung transplant continues, she is taking lots of baby steps in the right direction! We were able to visit with her a few times this last week, and she is really looking great. Yesterday when we arrived at the hospital, we could see her walking around through the windows in the doors to the ICU! We joined her for the last half of her last lap around her section of the ICU, and she did great. She still has the the trach tube in, so she is still unable to talk, but communicates by either writing in her book or mouthing words/sentences. Hopefully the trach tube will be out sometime this week, but really it's hard to predict. It just all depends on how things look each day. She is on a feeding tube for now, but once the trach tube comes out they will do a swallow test to make sure everything works ok - then she will be able to eat some soft foods. She did write us a note while we were there telling us how she can't wait to be able to DRINK again. I can't imagine not being able to take a sip of water when I wanted! Poor thing!

Last week they did a procedure to remove a small piece of her lungs so it could be biopsied for rejection. While we where there the Dr. came in to share the results. He said there was slight rejection, but nothing he is worried about. They will start Julie on some additional meds to help with that and said slight rejection like that can be normal for this stage after a lung transplant.

Like I've said before, there are always some setbacks but that is just par for the course. All in all she is doing GREAT and we are all just SO proud of her.

Last week my 7 year old nephew Miles came to visit for a few weeks. He is staying with my Mom and Dad in Redondo, but of course I will get to see him quite a few times while he is here! On Thursday he came over to meet Darby for the first time and to play for awhile. They had a great time playing together. It is so cute to see Miles interact with her, you can definitely tell he has smaller siblings at home. He is so good with her and loves to kiss her cheeks!! (who doesn't!?)



On Monday and Tuesday mornings we are taking Miles and Darby to Disneyland! It will be the first Disney adventure for Miles and as you can imagine, he is just SO excited.

My sister and Andrew are coming to visit in a week and we also have a family camping trip planned while they are all here! Miles can't wait to go in the trailer, he thinks it looks so neat. It should be really fun. I love when my sister and Andrew visit (we don't get to see them as much as we'd like, I wish they lived closer!) and having Miles here too just makes it all extra special!

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1 comment:

Unknown said...

awwww the pictures of Miles and Darby are sooo cute!!! I bet Miles will have a TON of fun at disneyland.
Love,
Clara