Saturday, November 20, 2010

Long awaited update

Wow, I am truly sorry that I haven't updated in so long! I guess moving and everything else has taken more out of me than I thought it would. (Of course, stupid mono hasn't helped.) So much has happened since the last time I updated the page! We have had two emergency trips to Rochester, CT scans and shunt series. All have been fine, obviously. What was NOT fine though, is that Gracie was having sub-clinical seizures. This means that she was having seizures, so small that they easily go undetected. Even an EEG often does not catch a sub-clinical. They are basically usually suspected due to symptoms described to a neurologist by the parent, and then if you're really lucky ( like we were) your kid will have an episode while she's in the office! This is exactly what happened with us. When we found out about these seizures, the neurologist's first thought was to go up on her Carbatrol. I had done some research though, and found that Keppra, the first anti seizure drug she was on, has the lowest risk of LONG TERM side effects. So, we decided to try her back on the Keppra. We started her on what we call "a middle of the road" dose, as we weaned her off of Carbatrol. She went from a morning does of Carbatrol and an evening double dose to a morning dose of Carb and Keppra and an evening Regular dose of Carb and Keppra. She did amazingly well on this combo. We were supposed to do this for one week, then weekly take away a dose of Carbatrol a day, until we got down to just Keppra. Well, she had another seizure. So, we have decided that her body might need the combination of drugs, which many kids do. So, we have settled at 100 mg of Carbatrol in AM and PM and 400 of Keppra in AM and PM. She also take Vitamin B6, which naturally stabilizes the mood swings that both drugs can cause.Getting them into her is a daily challenge!! The Keppra tastes nasty, and now she knows that she's taking medicine when she eats her morning yogurt. OOPS.

We are a little over 2 months into the school year. I can say without a doubt, school is one of the best decisions we ever made. Grace gets so excited when she sees the bus pull up to get her, and when she gets off at night, she has to go and say goodbye to all of her friends. She has LEARNED so much! She knows her right ffrom her left, they've retaught her to dress herself (partially). She's able to talk up and down stairs assisted. She now gets up and down on the potty by herself again. It's not uncommon to have a 5 or 10 MINUTE conversation with her, where she's the one initiating.

Josiah is doing well also. We have an ENT appointment for him on 12/1/2010. It looks like we will finally ne getting ear tubes for our little man. He has had obnoxious, recurrent ear infections ever since I stopped nursing him at a year. He and Gracie are the best of friends!

And to end, I can NOT believe that a year ago, we were watching as Grace was wheeled back up from the OR. She had just had her shunt revision, and she looked like a little Indian princess. She was still comatose, and the neurosurgeon came in and told us that while the surgery had gone well, the stroke had been more massive than he had originally suspected. I still hear the words, "time will tell" resonate in my head. I can see her eyes flutter open for the first time, and see her try to form those first words. I can see her sitting on my mom's lap, unable to control her movements. I can remember wondering if it would always be like that...and if she would hate me if it was. If you prayed for Grace, even once, in this past year, THANK YOU. I will NEVER tire of thanking you. Moreso, I will never tire of thanking Jesus. I try to always end my posts the same way...God has been so good. Isn't it exceedingly true, more and more every day? How has He been good in YOUR life? Think about that today...even in the storms and trials, He is still good to us!!


No comments:

Blog Design by Ammupappa