Jackson's Journal

Hi friends! Sorry it's taken me so long to update.

Let's see, last time I wrote we had just gotten home from Duke. Shortly after we arrived home Jackson developed a rash over his whole body that got progressively worse over the course of a few days. Despite many calls and emails to Jackson's medical team here, they basically ignored my concerns by putting me off (telling me they would talk to the doctor and get back to me and then not calling back) and giving me ridiculous treatment recommendations (to put baby powder on it?!). It was incredibly frustrating! This rash was clearly NOT RIGHT and nobody was taking me seriously. This went on for a week and a half before we got some resolution.

We happened to have an appointment at a different hospital to see a new orthopedic doctor. While in to see her she noted the rash and sent us right across the hall to the pediatric urgent care clinic. We had excellent treatment there - they took a full history, cultured his rash in a few places, contacted his transplant team for more history, and had the infectious disease team come see Jackson to make sure he was being diagnosed and treated correctly. We were very pleased with the care (and may end up transferring Jackson's transplant care to this facility).

As it turns out, the cultures taken from Jackson's rash grew out two nasty bacteria - MRSA and psuedomonas. Both of these bacteria can be very dangerous in people with suppressed immune systems. Jackson was treated with antibiotics and the rash cleared up, but it was scary that this rash went unchecked for so long. And extremely aggravating that we got such a brush-off from his team here when I was sounding the alarm bells and trying to get them to pay attention.

ANYWAY! That's old news. Jackson is fine now and that's what matters.

We did decide to keep Jackson at home for school after all. If the school district opens up a spot in the augmentative communication class for him then we will reconsider, but for now he's continuing with the same teacher that has been working with him for years now. She's wonderful and they have a great rapport. She challenges him and he really responds well to her. He's also continuing with his speech and physical therapists from last year. We were sad to lose our beloved occupational therapist, Mary Beth, who recently moved to Sacramento. She had been working with Jackson since he was 2 and has been a big part of our lives, and she is greatly missed!

Last week Jackson had a trial of a new communication device that utilizes eye gaze as a form of access. He did very well with it - he was able to play a Whack-A-Mole game with success, and played around with some of the alphabet and core vocabulary pages. He's going to trial a different device in a few weeks so that we can compare the two, and hopefully we'll move forward with trying to secure the funding for one shortly after that. I think it will be much easier for him to use than his current device, which relies much more on neck strength and head control for accuracy.

Alexa and Maya are wonderful little bundles of enery. They're toddling all over and getting into everything . Maya is really starting to talk and loves to repeat everything said to her. Alexa loves to read and help me in the kitchen. They're keeping me busy but it's so much fun. Watching them develop is a whole new experience for Marshall and I and every day we're amazed by the things they can do. They fill the house with so much joy .

On a sad note, Marshall's Uncle Quincy passed away yesterday. He was a wonderful man and he will be greatly missed. We were supposed to see him at Marshall's family reunion this past June, but we had to miss it because of the problems with Jackson's port infections. We are very sad that we didn't get to see him one last time. Rest in peace, Uncle Quincy.

Thanks for checking in. Peace and blessings.