Welcome to Megan's website. We started this website to keep our family and friends informed about Megan's journey. And what a journey it has been! Megan was diagnosed with hydrocephalus at our first ultrasound. She was born screaming on June 1st, 2004, and has been doing that since! She started having seizures when she was three weeks old. She was being treated for her first shunt infection at the time. She has had 2 infected shunts, a failed ETV, and some eye surgeries, as well as tubes in her ears. She has other abnormalities of her brain in addition to the seizures and hydrocephalus. She has also been diagnosed with CP.
Despite these labels, Megan is a true miracle! She has defied the odds since we found out about her hydro. Has life been easy? No! But because of our faith in Jesus, our trust in God, and the power of prayer, Megan is walking, talking proof that miracles happen. Now come along for the journey with us!
Here is a song that I wish was on playlist.com... Steven Curtis Chapman sings it. It is called Proud. I am in LOVE!
Strike three, bottom of the ninth and you were batting back the tears Feelin' like you let the whole world Down, Down, Down
You and me, drivin' home in silence I was searchin' through my words Tryin' to find the perfect ones To say out loud
Well, I don't remember What it was I said to you But I remember what it was I wanted you to hear
Proud, I'm just so proud I don't know how to say it any better Proud, you make me proud Win or lose, well it really doesn't matter
'Cause you step up to the plate Swingin' for the fence You're gonna change the world around you I'm convinced Just look how you're changin' me
We both know that sometimes You make me crazy And we both know that sometimes We let each other down
But I want you to know whatever you do Just because you are you You will always be makin' me proud
I don't know how to say it any better Proud, you make me proud And win or lose, well it really doesn't matter
'Cause you step up to the plate And swing for the fence You're gonna change the world around you I'm convinced Just look how you're changin' me
You're making me proud You're making me proud I'm so proud
Journal
Thursday, September 14, 2017 5:45 PM CDT
Ok, so 6 years later, I'm back.
Megan's been doing fairly well for the past few years for the most part. This year, has been different. That's what has prompted me to update because sometimes writing it out helps me think and strategize.
We found out when Megan began puberty that her menstrual cycle is a HUGE seizure trigger for her. She began to take birth control pills at first to regulate her hormones and control her seizures. Because of her CP and lower cognitive level, she is unable to independently take care of her needs during that time, so we began using the depo. shot to eliminate that issue and control her hormones. That has helped her seizures immensely. But... and there is always a but!, she has become incredibly volatile. She will suddenly "snap" and begin attacking one of us, swearing, screaming, threatening to kill us kind of rage. She falls a lot during these rages and we are afraid that she will actually hurt someone or herself. So we sought the help of a behavioral therapist. That was a joke. Her suggestion was a sticker chart (as if we hadn't tried that) and then dismissed us. We coasted along for a bit doing ok until we weren't ok anymore. In this time, Jack was diagnosed with ADD. The doctor's office that helped us with Jack also had a behavioral health clinic, so we got a referral for Megan to be evaluated. After a short interview, the doctor there declared her OCD/ODD and prescribed a medication used to treat bipolar. While Chris and I weren't thrilled with how quickly they prescribed such a heavy duty medication, we were desperate for help/answers/calm. We began giving her this medication, and over the last month have watched her mental and physical decline. Her memory is gone, she is more unstable on her feet, she is still raging, and she is slower cognitively. Thankfully, we have a fantastic physical therapist that works with Megan and is just as concerned about this change as we are. We saw our family doctor today and we are going to wean her off of abilify and seek treatment somewhere else. This doesn't help us immediately, but I'm hoping we can finally find an answer and some help for this. We are all tired of the rollercoaster and feeling like we are being held hostage by her mood.
Beyond that crazy rollercoaster, she is in 8th grade now. I am astounded at how quickly time goes! Next year, I will have 2 high schoolers! She loves the color purple, loves to dance and play baseball, and is in love with the newest version of Beauty and the Beast. Jack is a freshman (! WHAT?!?!?!) and is turning into quite the amazing young man. He completed driver's ed this summer and, once we find him a car, will be able to drive himself to school. He is all about science and his newest hobby of beekeeping. Chris is now a truck driver for a local Pepsi distributer. He is much happier there than he has been at his last few jobs. I love that he can hook us up with our favorite sodas and water! I am a behavior classroom teacher for ESU 4. It is the most demanding, stressful, and rewarding job I have ever had. I am convinced that the only way I can accomplish my job and take care of Megan's health issues is truly through the grace of God. My health has been an issue, but I think that with my pump that I have had for almost a year and the discovery of some food intolerances, I think we are getting to the bottom of that. The stress of Megan's care and my job, my health has really taken a hit.
The last great thing is that we finally found a bike that Megan can ride independently. We ran a Red Basket fundraiser and are fully funded to buy her that bike! I am hoping we get that before the weather gets too cold and she can ride some before winter. I'll try to figure out how to post a video of her riding... or I may have to start a new site.
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