I didn’t mean to let this much time pass between entries. But we have just been busy. So in order to try to catch y’all up, I’m going to try to be more concise. Sure.
First, Brandon and his unit are safely home. Our thoughts and prayers are with the Marines who were wounded and killed in action. Brandon got back to us on my birthday, May 17. We are doing well, enjoying our time together. We have traveled to the beach twice and to Charlotte. His post deployment leave is just about up and we are getting back to “normal life” for us. The really cool part is that the three of us actually live together in our own home. We essentially lived apart for 2 and a half years treating Maddie’s cancer in Charlotte followed by his deployment. So while much of our life is not normal, at least we get to live it together again.
Maddie is doing about the same. She is still on Lamictal, though we are currently reducing it a bit. We have seen some cognitive improvements since starting it and some seizure improvement. As we got to a higher dose, the cognitive improvements seemed to go away so we are trying to get back to a dose where she felt better and had more energy and attention.
We are not sure what the next step is as far as meds go yet. We are close to the point where her Neurologist will want to introduce a third anti-epileptic drug. I am not sure I’m comfortable with a cocktail like that and may want to get her off Keppra before starting anything else.
Right now she is not really walking or talking and she has seizures around the clock. So we are certainly not happy with the status quo.
On June 24, we will head to Wake Forest for her to get a MEG. This is a new type of scan that she has never had. We are hoping to find something that could be a cause for all these seizures. We certainly don’t like the idea of brain surgery, but at this point we are hoping for anything that will give us some hope that we can stop the seizures. She will have an MRI along with the MEG that day so it will be a long day with her under anesthesia for many hours. Please pray that this all goes well.
On a more positive note, we had Maddie’s oncology check up last Friday and her counts showed her to still be in remission from her leukemia. We only have these appointments every two months now, which is a welcome change.
Maddie started preschool at the Elementary school 1/2 mile from our house on base in April. She is in a self-contained class with just one other student right now. The school year has just ended and we have a short break before we start 3 weeks of summer school in July. For now, I go with her to school and act as her aide. It is the best way to ensure her safety with such frequent seizures. The amazing thing is that she is making progress. It is definitely slow, but it is going far better than I expected. We only had school for 90 minutes per day this last year, we will do two hours daily over the summer, and will do 2 hours 45 minutes daily starting in the fall. It sounds like very little but it is very hard work for our little girl. We are so proud of what she has been able to do so far.
Here are some pics from the last few weeks.