Tuesday, August 31, 2010

27.7 LBS And Nearly Button Free

Anna and I spent the day in Ft Worth. The highlight was getting to have lunch with my dear friend Amy who I don't see near often enough. We ate at a cute little deli/bakery place called McKinley's and then it was off to Cook's for an afternoon of appointments. Let me just say that there is nothing quite as humbling as an afternoon spent in the waiting area of the Neurosciences Department. It is so clear at that time how minor our struggles are compared to others and how blessed we are that Anna is doing as well as she is. We met the cutest little boy from Abilene names DaShawn. He has CP also and is finally learning to walk. He had the sweetest smile and disposition and maybe even a little crush on Anna. So here is the Neuro update: let me again start by saying how much I love Dr. Hernandez. He is so kind and caring and makes crappy news seem not so bad. He said that even though Anna's 1 hr EEG was normal, he is certain based on the descriptions and patterns of Anna's seizures that they are indeed seizures. He said that only 50% of kids with seizures will be caught on the 1 hour EEG. He wants to push the Tegretol to its maximum and see if we can get better control but he didn't seem to hopeful about that. We went up on her nighttime dose tonight. We are to stay at this dose for a week. If there is another seizure we will go up again on the nighttime dose. If she has another seizure after that then we are to stop the medicine and she will be admitted to the Epilepsy Monitoring Unit at Cook's to try and get a clearer picture of what is going on. She would also have a repeat MRI at that time. Dr. Hernandez believes the cyst in her brain is most likely the cause of the seizures. We talked about the cyst and he had some pretty tough things to say. It hurt to hear about how my baby has never been "normal" and her development has never been "normal." I know those things but for some reason knowing them and hearing them are totally different. He was kind in his delivery but those things are hard to hear no matter how they are delivered. He said that 60% of kids will become seizure free with 1 medicine, 80% will be seizure free with 2 medicines, and the other 20% will never be seizure free. He hopes we will be in the 80% because the 60% is not looking likely at this time. I talked to him about how it was like someone pushed the reset button on her when she started seizing and about the advances we have seen with her since the seizures started. He agreed that those are wonderful things but said that where we are right now is not a good place to be because if we do not get the seizures under control she will eventually suffer further brain damage from them. I also talked to him about how the seizures seem to mostly occur in her sleep and either right after she falls asleep or right before she wakes up in the morning. He said that is typical because at night our brain looses all inhibition and does not even try to suppress those erratic firings. The 2 times she is having them are at specific times in the sleep cycle which are the times most likely for seizures to occur. He expects to probably hear back from us in about 2 weeks. And now for the GI update: the button is coming out!!!!!!!! Dr. Ogunmola does not have the tool to remove it though so we have to make an appointment with the surgeon to get it out. It is just done in the office and is apparently no big deal. I will be calling to set up that appointment tomorrow and hope they can get her in very soon! Anna weighed in at a hefty 27.7 pounds which puts her above the 25%! That is fantastic news. Dr. Ogunmola couldn't believe it either. We are going to keep her on the Nexium for now but cut the dose in half and see how she does. He said he generally doesn't like to remove a button until it hasn't been used for 4-6 months but because we are at a place where Anna's needs to be replaced or removed, he does favor removal to replacing a button that we are not using. He said there is the risk of her stopping eating and needing it back. We realize the risks and accept them. So that was the day. I have my OB appointment in the morning and hope it goes as smoothly as today did. Goodnight!


  1. Jamie you are incredible to be dealing with all of this and on top of it being pregnant. Your girls are so very lucky to have you

  2. Wonderful news on getting her button out & weighing in at 27 1/2 lbs!! I was surprised to find out that Ali was up to 26 lbs last week at the Dr. - wow! Seemed like we'd never get to 25 & now she's passed that. :)

    Hope you get the seizures under control soon. (((HUGS)))