Sophie is now 8 weeks old! She will officially be 2 months old on Tuesday. She is smiling, cooing, and becoming more interactive...especially in the evenings before we put her to bed. She's adjusted well to bottle feeding, since I made the decision to stop nursing after her hospital stay a couple weeks ago. She's also sleeping very well at night. Most nights she's in bed by 8:30pm, up around 4:30am for a bottle then back to sleep until 8am! This gives us a chance to get Kayla and Madelyn up and ready in the mornings before she wakes up. Life has been manageable lately, but Sophie is still having daily seizures. For the past week or so we have seen 1-2 short ones each day that have not been concerning and have not had to be stopped. It is easy to forget her diagnosis when we go through calmer periods like this. Yet, in the past two days she has started having clusters of seizures in the late afternoon. Yesterday she had five short ones in the span of an hour and I ended up giving her medication to calm things down for her. It's been hard for me that we had such a calm week and then a couple days where I've started feeling uneasy again.
We are moving towards surgery sooner than expected. In speaking to her neurologist yesterday he doesn't see the cluster seizures as reason to change any of her medication, but did say that the epilepsy team at Children's has been discussing her and in their recent meeting feel that it is time to start taking the steps toward surgery to remove the largest tuber on her brain. This is the one that they found during EEG monitoring is causing most or all of the seizures. The neurosurgeon originally said that he would like to see her be 4-6 months old before operating, but with being on three seizure medications and never completely having them controlled he agrees that we are at a point that surgery is acceptable. We would just be continuing on this path of adjusting medication and watching/waiting until she's older. So today after speaking with both the neurologist and neurosurgeon we have an appointment on Wednesday morning to discuss the surgery, what it will entail, when it will happen, etc. We don't have a firm timeframe yet, but think it will be sometime in the next month.
Mike and I are apprehensive, but hopeful. The thought of Sophie having brain surgery at such a young age is hard to accept, but if it can lessen or even stop her seizures it would be life changing for all of us. We feel that we are on the path that has been set before us and that God is guiding us every step of the way. My continual prayer is that the doctors are guided to make the best decisions possible for her care and that we are given what we need to care for Sophie day to day. Surgery will mean that our daily lives will be hectic again and we probably won't all be under the same roof for a time, but we know we will get through it.
Please pray for us as we move toward Sophie's surgery. It is all very overwhelming, but we continue to take life one day at a time. We feel so blessed to have been home together (again) for almost two weeks and hope that we'll be able to do so until the surgery. I'll update again when we know more.
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