Trace had two appointments last week - GI and Neuro. Since his last hospitalization in December Trace has been doing very well on the GI front. He's been eating, and eating and eating. For those of you who know Trace, he has never eaten well and could care less about food. He's been a little bottomless pit here lately though. Eating like every two hours! I've been thinking the last two months how wonderful it must be for Trace to actually enjoy food. I know I sure do! I noticed when being weighed at his last couple of appointments he did not gain weight. Dr. N confirmed Tuesday that Trace has made no strides in the weight department despite his new eating habits. Dr. N spoke briefly about his concern that Trace may not be properly absorbing the calories he intakes. He seemed more concerned than usual, maybe because Trace is actually eating and the explosive diarrhea has taken a back seat for the time being. He discussed yet another plan for Trace to gain. I don't feel this new plan will work, but we'll try. So we go back in two months to see if Trace has made any progress.
Friday he had his appointment with his neurologist/epileptologist. I knew this one wouldn't really bring any great news, just because of everything going on lately. I let Dr. V know about the new absence seizures which Trace has been experiencing the last couple of months. Dr. V explained that due to Trace's type of epilepsy it is common to develop different types of seizures throughout his lifetime. I also expressed my deep concern of his neurological prognosis. Trace is at the developmental level of an 18-24 month old - he's 4. He sees 2 speech therapists, 2 occupational therapists and 1 physical therapist and still no real progress has been made. So after all the discussions were had, Dr. V decided to change one of his seizure medications and ordered a 23 hour EEG. She is changing meds in hopes to see Trace develop better. He is currently taking 3 seizure meds - Keppra, Topamax and Klonopin. We will replace Klonopin with Onfi, monitor seizures for a month, and if it works we can try to remove the Topamax too. She ordered the EEG to monitor how many epileptic discharges are happening in his brain. A large amount of these discharges could also be a cause of the lack of development. I really hope it's as simple as the meds. Of course, neither of these could be the cause. We may never know, we may never be able to fix it and I have to learn to be okay with that.
Friday he had his appointment with his neurologist/epileptologist. I knew this one wouldn't really bring any great news, just because of everything going on lately. I let Dr. V know about the new absence seizures which Trace has been experiencing the last couple of months. Dr. V explained that due to Trace's type of epilepsy it is common to develop different types of seizures throughout his lifetime. I also expressed my deep concern of his neurological prognosis. Trace is at the developmental level of an 18-24 month old - he's 4. He sees 2 speech therapists, 2 occupational therapists and 1 physical therapist and still no real progress has been made. So after all the discussions were had, Dr. V decided to change one of his seizure medications and ordered a 23 hour EEG. She is changing meds in hopes to see Trace develop better. He is currently taking 3 seizure meds - Keppra, Topamax and Klonopin. We will replace Klonopin with Onfi, monitor seizures for a month, and if it works we can try to remove the Topamax too. She ordered the EEG to monitor how many epileptic discharges are happening in his brain. A large amount of these discharges could also be a cause of the lack of development. I really hope it's as simple as the meds. Of course, neither of these could be the cause. We may never know, we may never be able to fix it and I have to learn to be okay with that.
Friday we also received the call scheduling his MRI. It will take place this Friday, Feb 24th. Trace will be put under general anesthesia for the MRI. Please say a prayer for my little Mister so that all goes well for him Friday.
Some days I pray so hard for answers, to know exactly what Trace's future holds. Some days I pray not to know, because I'm scared of what it may hold. Some days I feel strong, like I'm winning this battle for my son. And some days I just feel defeated. This past week I felt defeat, but I know I will rise above that defeat. All I need to do is remember how blessed I am to have been chosen as this sweet boys mother.
Trace & Daddy playing a little football
at Chuck E. Cheese last weekend
Trace loves bubbles!! What fun!!
Hope, Love, Courage &Faith,
Laurie
