I'm sorry it's been so long since I've posted. Things have been really crazy since Kennedy arrived at Children's. First, and most important, she's doing great! She had a few little rocky days trying to adjust to life back in Jersey and get used to her new surroundings but she's all settled in now and doing much better.
So far we really like Children's. They're doing a lot with Kennedy and she has lots of appointments during the day. Physical therapy, occupational therapy, recreational therapy and speech therapy. The speech therapist is actually working with her to help her feed from a bottle. That's one of the things we told them that we really wanted them to work on with her since she seems to take her pacifier so well. So far she's doing good with it. She was able to drink 10 ml's from a bottle and has been doing well with her swallow tests. They think she definitely has the possibility of drinking from a bottle full time.
I brought her swing to the hospital over the weekend and put her in it for the first time and she really liked it! The nurses say they put her in there and she just sits there and hangs out. I was also able to give her a bath last week and she absolutely loved it!! These little things that I took for granted with Makenzie just feel so great to finally be able to do with Kennedy!
We had a family meeting with the team after she was there for a week and they were able to assess her. Arthur and I said we wanted her home sooner rather than later but obviously if she needed to be there longer than our hopeful discharge date we'd understand. They told us, since all the machinery she's still on is portable, that they're looking at a possible discharge date of October 9th!!! That's 4 weeks from today! I can't tell you how amazing it feels to have an actual date to expect her to come home! I know it may change but probably not by more than a week or so and even that feels great! To know that in less than a month my daughters will be together under one roof. That when I wake up in the morning and go into Kennedy's room, like I do every morning, she'll actually be in her crib waiting for me. That I won't have to put her back in her crib in a hospital room and leave her to go home. It feels so wonderful!!! I'm hoping and praying that she stays on track and in a few short weeks we'll welcome her home!
In the meantime there is A LOT of stuff that we need to do. Arthur and I continue to train to do the trach care. We did our first trach change together last Saturday and I must say it went pretty well! Kennedy was good to us and behaved. We also completed our vent training which included taking the machine apart and putting it all back together again. Yesterday the medical supply company came to the house for our inspection. They needed to test out the outlets in her room to make sure they can handle all the machines she's coming home with. Luckily we passed and no electrical work will need to be done. They showed me the list of items that they're going to deliver. It's 4 pages long!
We're also interviewing the home nursing companies this week to see which ones we like. We met with Loving Care on Monday, Bayada on Tuesday and we're meeting with PSA Healthcare tomorrow. If anyone has any feed back on any of these companies or recommendations for other pediatric home care companies I'd love to hear about it! I find it very hard to pick a company based on an interview with a client relationship rep.
So that's where we stand right now. Checking the to-do things off the list and preparing for her homecoming! Room is all ready, clothes are washed. We're just waiting on the princess!
Love to all,
The Crist Family
Kennedy Crist was born on March 23, 2014. She was 2 lbs, 2 oz, 14 inches long and 14 weeks early. This blog is to help keep all of her friends and family updated on her progress.
