School started back up a month ago. So far she is having another stellar school year. I love the year round schedule. It works out so well for her.
I’ll get to the fun stuff first.
My brother came a couple of weeks ago, along with his family. They stayed at my dad’s house in Raleigh, but we spent as much time with them as we could.
This was the first time Rebecca got to meet her Uncle Steven, Aunt Karen and her Cousins (Josiah, Ashlynn, Joel and Allyson). It was soo much fun! I haven’t even seem them since the spring of 2004. The kids were so great with Rebecca and loved on her so much.
Unfortunately I didn’t get one of each of the boys with Becca. But you better believe they loved her just as much as the girls.
It was a great time. It was so hard saying goodbye to them as they left.
August also brought us some concerns. Back in late July at her neuro appointment her Neurologist decided to add a new drug to Becca’s regimen. We added Lyrica (you’ve probably seen commercials for it to treat Fibromyalgia – but it is also a seizure medication). Anyhow within a week of adding this medication when I went in to wake Becca for her night-time meds I could not rouse her. She may as well have been in deep sedation. That was scary! I got in touch with her doctor and we lowered the dose. She was still only getting a small portion of what her intended dose would be . She was only getting the medication once a day. A few weeks later we were seeing some troubling signs. She was staying tired and lethargic. She began to refuse to walk. You could try to get her to stand, and she may take one or two steps before lowering to the ground. She had a dull, listless look in her eyes. So, being the sensible parent I took her to the ER. The primary concern was her shunt was no longer working.
We had a horrible, rotten, no good experience with the hospital. They did the CT and x-ray in good time in the ER. BUT when the resident (aka Junior Neurosurgeon) came in to talk to me he said her ventricles were “a little enlarged”. He did say it was nothing like they were during her previous failures, but he neglected to say that the “little enlarged” was in comparison to her best CT scan ever. We were admitted and the next morning they did a shunt flow study. I was NEVER told the night before that was their intention. Nor was I told until we were waiting for this study that was their main reason for admitting her, because they couldn’t get that done the night before. Something about the tracer they inject isn’t something they keep around and they had to order the tracer. By order, what they meant was “mix up” (at first they made it seem like they had to get it from another facility).
FOUR hours after her scan the neurosurgeon came to talk to us. This was hours and hours of our sweet nurse paging anyone and everyone in Neurosurgery to come talk to us. Her scan was fine. But they wanted to keep her till Monday for observation (this was Friday night) and do a repeat CT scan. I said NO! We live 20 minutes away and will come back.
All this time they were lackadaisical about her flat affect and not being willing to walk. Neurology did adjust some of her meds (increasing the Trileptal).
We had her repeat scan outpatient on Tuesday evening and met with her Neurosurgeon Wednesday morning. The good thing is her scan is still stable (no change since the one in the hospital). Dr. Grant said that even if they saw that kind of scan in someone without a shunt it would still look perfect. (phew!)
After we came home from the hospital I called her Neurologist, Dr. Mikati and demanded we take her off Lyrica. So I’ve weaned her off that. Now to see how well she does as that gets out of her system. You can already tell she feels soo much better. Her seizures are still kind of crazy, and that is going to have to be dealt with.
Becca has her annual MRI in about 2 weeks. This will be to check for any tumors, and to umm triple check (?) her shunt. Then in November we have a EEG for her, and another appointment with her Neurologist (Dr. Mikati).
She continues to amaze me with using her left hand, and her overall fine motor skills. She has periods of babbling a lot, then she goes silent again.
Continue to keep Becca in your prayers. Pray we find the right balance with these medications. I know God can, and will heal her completely in His own time, it is just very hard to wait for that sometimes.