Tuesday, November 30, 2010

Some pictures...

Mary and Chad                                           Gracie's schoolwork

Mary and Grandpa

Gracie praying before Thanksgiving dinner

                                                          The ladies at Thanksgiving Dinner
Amanda and Charity

Friday, November 26, 2010

Thanksgiving 2010

"In every thing give thanks: for this is the will of God in Christ Jesus concerning you." I used this verse last year...but did not at the time realize how true it was.

 So, I have of course, found myself looking back to last year at this time. Last Thanksgiving, our pastor had gone to Florida to visit his daughter. He called me that morning though (says something about him, doesn't it?)-- to get an update and let us know we were on his mind and in his prayers. When we were getting off the phone, he asked me "What are you thankful for today, Michelle?" I knew I should say something...even with everything that was going on, I still had so much to be thankful for. I was silent though. Completely, utterly silent. I can remember his words as clearly as if he were speaking them to me right now.  " Be thankful, Michelle. Find something to praise God for everyday. No matter how big or little- just make sure to praise Him."

Today, I am thankful that I took his advice. I am thankful for those moments in the stairwell, when I would run up and down them, just to expend some of that pent up energy and adrenaline. I would run and pray, and run and praise. Sometimes, the only thing I could think of to thank Him for was the fact that I hadn't fallen! I can remember one night, I was running and singing " How Great Thou Art" at the top of my lungs. Probably not very well, and believe me, it didn't start out with a right heart. By the time I got to the chorus, I was into it though. So into it, I didn't even notice the doctor sitting on the bottom stair and I trampled right over him. It was like 4am and usually there was nobody down there at that time. I apologized to him and kept right on going...and a few days later he came into Gracie's room to do a consult. He looked at me somewhat strangely at first, with a glint of recognition, then just went about his job.

This year is different...and I am thankful for that. We had dinner here at my house...I think there were 16 or 17 here all together. My mom, Amanda, Gracie and I cooked and baked for what seemed like days-- and the guys left an hour later to watch the game. :) And I'm thankful for that...last year, we ate at the RMH- and I left after an hour to get back to my comatose daughter. This year, we had a million and a half dishes to wash, vacuuming to be done...and I think there is chocolate permanently stuck on my couch. Last year, there were no dishes to be done, no messes to be cleaned up...it was all done for us so we could relax. In reality, the majority of us rushed back to our loved ones. This year, my little house was so loud I couldn't think.There were three under 5, five teenagers, and John Spangler (LOL) here! Last year, the hospital room was completely silent...all you could do was think. Think about what tomorrow would bring, what the next MRI would say, whether she would soon wake up completely, what waking up completely would mean. Yesterday, when I started to think that it was too loud, when I was somewhat tempted to complain about the noise, I thought about that. How last year, I would have given anything just to hear her sweet little munchkin voice.

What am I thankful for this year? I'm thankful that I've had my loving Savior as my Guide for the past 375 days as we've gone through this journey. I'm thankful that He truly is the Great Physician...and that as He has healed my daughter physically, He has also used her to heal others spiritually. Including us. I am thankful for a husband, who while imperfect, loves his God, his wife, and his children with his whole heart. I am thankful for the two beautiful children God has given me, and the amazing teenager He has entrusted me with for now. For the parents who have been beyond amazing. There have been entire months missed from work, emergency trips to Rochester have been made. They have watched Josiah more times than I could ever count, and just been my rocks. I'm thankful for our church and our church family, without whom I would not have made it through this year. I am thankful for the people that I don't know (school classes, missionaries, churches across the country) that have taken my family, and prayed for us. These people that don't even actually know us have given little pieces of their LIVES, as they lifted us up in prayer. It leaves me amazed whenever I think of it.

And last, but not least...I am thankful for this trial. Thankful that God chose US to go through this...and then chose to go through it right along with us. He has been so good to us!!

Michelle

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!!

Michelle

Tuesday, November 16, 2010

So, a year has passed...

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