Summer Time = Fun Time

It has really been along time since updating the blog...in this case no news = good news! Anna is doing wonderfully! In my previous post, I mentioned trying to take Anna off of one of the medications that we order from Canada (Sabril). This didn't work so well, so in March we tried to take her off a different drug (Banzel). As she came off of that drug, her seizures started to reduce from once a week to once a month. So we are now 5 months with only having 1 seizure a month! This is BIG! One of the medications (Depakote) that Anna will stay on was being suppressed by the drug that we took her off of, so for now only 2 meds, 3 times per day.

Anna was attending school and physical, occupational, and speech therapy 3 days a week at Dell Children's Medical Center. We have had this schedule for the past 7 months and it has been so beneficial. For the summer, she is now going 1 day a week for 2 hours and 2 half days a week for summer school. She has made so much progress in the past few months. The surgeries in Sept. and Oct. really set her behind and now she has caught up and being off the third medication has made her more alert. We are so proud that she is able to tolerate the therapies and school.

We did have a minor set back at the beginning of the summer that required Anna to have a surgery to move her shunt. The first couple of weeks in June we noticed that Anna’s breathing had changed, and within 48 hours it became very short and shallow. At first I wondered if she was developing a cold or an allergy. Then as things worsened after a few days, we thought of a chest tube that she has from a shunt that was placed there after her brain surgery in September. Surgeons at that time tried to place it in her tummy, where typically shunts empty, however Anna needed the extra pressure from her lungs to bring down the cerebral fluids. It’s way more complicated than my brain can explain!

We called the neurosurgeon on our way from from Arkansas to ask if the chest tube could have anything to do with her breathing or should we go to a pediatrician. They requested pictures of her chest and head to rule out anything. We were just past Dallas and had to speed up to make it to Round Rock before the imaging office closed on Friday evening. On Saturday afternoon Anna’s breathing became like panting and the surgeon called and confirmed that she did have fluid around her lungs. We met the surgeon in the ER and after more x-rays and a few panic attacks, Anna went into surgery. They removed 1 liter of fluid from around mostly her left lung and revised the shunt tubing back to her tummy. It was about a 2 hour surgery and once we got a chance to see her, she is completing different. Smiling and taking deep breaths again. Very scary Saturday, but all seems better now. After one short night in the hospital, she was back to being our sweet happy Anna.

Thank you all for your continued prayers and checking on our sweet, joyful, full of life, Anna!

Love,
Rebecca