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
Saturday, July 4, 2009 3:31 PM CDT
Hello all! So I promised a better entry, and here it is.
Megan had a very rough day on Thursday according to Diane (daycare). Chris and I had finished moving stuff that day, so I just wanted to go home and relax. About 7:45 she started complaining that she couldn't walk. Then she tried to stand up and toppled right over. I had her come sit on my lap... but before she got there she just leaned over to the right and couldn't push her way back up. I got her on my lap and called my parents. This was the first seizure that she has had with me alone (well, Jack was there too) so it freaked me out. Her seizure started while I was talking to them and so I hung up and went to get her diastat. It has been so long since we have used it that I had to really think about where I had it... we take it with us all the time, but I couldn't remember which bag we had used last! I got back in the room and by then (only a couple minutes) her arm was already going, soon followed by her face. I gave her the diastat about 8 minutes in... which is quicker than we usually do, but since it was moving so fast I thought it best. About 6-7 minutes later it finally stopped. Her face and eyes were the last to stop. I was about 2 minutes from packing her up and taking her to the ER. She threw up once which is normal, but she also had some diahreah (sp?) so I went ahead and gave phenergen... mainly because if she throws up once she will again and it was about 10:00 by that time and she needed her night meds. She fell asleep on my lap. I woke up at midnight still in the chair with her and Jack sound asleep on the couch. I got us all to bed and she was still sobbing so I took her to my bed.
She was alright yesterday. Tired and kinda cranky, but all right. Today is a different story. She is SO wobbly, has taken two naps, and just seems "drunk". I am now wondering if she has a sinus infection because of the vomit... we'll see how she is in the morning. I really don't want to have to take her to the ER for a sinus infection, but will if necessary. I hate this... I hate this I hate this. Blissful ignorance has gotten me by for a few months so this is just crappy. I am wondering how PT will go on Monday (if it is warm enough for the pool anyway). She is just so off.
Happy Independence Day everyone! Thank you HEAPS to all the service men and women that have sacrificed so that we may have INDEPENDENCE! I am very proud to know some great service people, and related to some as well. I am forever grateful!
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