Friday, May 27, 2011

This week.

So, I typed out a long post about this, that and the other, but I just don't like it. I believe I need to break out a list.

This week:

- The boy started on an additional IV seizure medication in hopes to regain control over the various seizure types that he experiences (tonic clonic, tonic, myoclonic, complex partial). Please pray that this new med works and he experiences none of the nasty side effects.

- Dr. R increased the dose of his pain medication due to an increase of pain. 

- We visited the surgeon for a follow-up...super easy visit.

- I flooded the basement with a large amount of water when I turned on the outside water hose in an effort to water the flowers.

- We fixed the computer after it decided to stop working temporarily. Truth be told, Bryan fixed the computer. I was just panicking at the thought of not having my computer.

- We finished up the Kindergarten registration process for Jilly with the final "screening", in which she shined.

- I calmed a sad little girl when she sobbed "I'm going to miss you when I'm at school." (referring to next fall when she starts Kindergarten.)

- We visited a research lab, met a new doctor and all three of the kids had buccal swabs to look at their Mitochondrial function.

- We had a visit with "Dot", the class pet. (and Mr. E, Wyatt's teacher)

- We visited Dr. R to check in. We acquired new scripts for the antibiotics that the boy routinely cycles through and he told us to keep doing what works in regards to the oxygen use.

- We all attended the hospitals support group for families dealing with chronic illness. The kids attended their own children's group with their favorite Child Life Specialist, Miss L, while Bryan and I socialized with the other parents.

- We started counting down the days until school is officially dismissed for the school year. We're all looking forward to summer break!

- I scheduled the final IEP meeting for this year to finalize next years transition to 3rd grade for the boy. Not much will change, though his peers and classroom will be in a different building. He'll still be home bound with visits when possible.

- I've had my fill of doctors, appointments, medical interventions and the emotions that accompany them. I'd like to just get back to "living life". I'm very happy it's Friday!

- Have a great weekend!
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  1. You sure had a busy week. I'm a new follower and look forward to reading your blog! Visiting from FTLOBs Comment Love.

  2. Stopping by from Comment Love. I read your story. I work with children and there is nothing more frustrating than knowing there is something happening but no answers. I hope you have a more normal week this week. It sounds like your family works wonderfully together :)