Additionally, after my request, the docs have secured two doses of H1N1 vaccine for Meaghan. She had her first dose today. The rest of us got vaccinated today, too. We haven't had the heart to tell Ethan he needs a booster in a month.
We look forward to a relatively quiet weekend. Meaghan has provided us with some additional smiles. She is still not talking and is very aggitated for most of the day. Sleep does not come easily or stay long. Our goal is to continue to get her to swallow foods by mouth and to work on chewing. The harder we work on getting her back to a regular diet, the closer we can get to bringing her home. Aside from occasional gagging, Meg has made peace with her feeding tube.
Monday will be a big day for us. At 8:00 a.m. we have our first radiation simulation. She will need to be sedated so they can make a precise form of her body. That will take up most of her morning. Additionally, she will be evaluated for inpatient physical therapy. Seeing as she still cannot hold her head up, sit up, chew, stick out her tongue, etc., I don't see how she wouldn't qualify for intensive inpatient physical therapy.
Inpatient physical therapy will mean a transfer to Children's Hospital. This will add a dimension of complexity to her treatment, because it will mean daily transfers between Children's Hospital and VanElslander for radiation treatment. She will have radiation five days a week for about six weeks. So every day, Meg will be transported via ambulance, sedated for treatments in the morning, then returned to Children's for physical therapy. Whew! Oh, and sometime next week she will have her full body MRI. Good thing Meg likes being wheeled around in her bed.
On a personal note: While I know it isn't expected, I am very sorry that I haven't had the time or ability to write personal Thank You notes to all of you that have blessed us with your time, your prayers, your gifts, financial support, bringing meals, doing yard work, chillin' with Maddy and E - all of it. Humbled doesn't adequately express how we feel. Thank you, thank you, thank you...