Lily had a great Halloween! She partied with her cousin Siobhan and went trick-or-treating in our neighborhood!
Sunday, October 31, 2010
Vist from Aunt Mary and Aunt Gaynor from England!
Doug's sister Mary, and her friend Gaynor have been visiting this week! They are from Peterborough, England and we've been having a VERY good time with them!
Friday, October 29, 2010
Thursday, October 28, 2010
Today's update...
We went back to see the doctor today. They didn't have to drain anything or poke and prod. (Lily calls this, "no ouchies.") For now, they are going to continue to watch the swelling and hope that if it stays wrapped up, that the pressure will help the swelling go down. If the swelling goes down, then no surgery for a shunt. We have to see the doctor weekly for awhile, and they've moved the next MRI into December. So, for now, we're relieved at where we are--and we'll deal with whatever comes, when it comes.
In honor of Lily's head wrap, her cousin Corbin got the "Mummy" treatment and sent her a picture. Lily laughed a lot at this! (Mainly because she loves playing with toilet paper too!)
On a related note...
We met a guy down at the hospital today while we were waiting on our doctor. His son was 27, wheelchair bound, and nonverbal. He told us their story, which started when his son was an infant with a bout of spinal meningitis. It left the baby blind, deaf, and unable to cry. They told this man and his wife that their son wouldn't live, but they went to the hospital every day for months regardless, and eventually, they were able to take him home. He had multiple surgeries but eventually gained back his sight and hearing, but had to have several shunts put in over the course of his first ten years.
For the last ten years, he's been stable, able to understand those around him, say several words and participate in life. He goes to a day program where he gets to interact with others and even go bowling. While we were with him, he "growled" several times, and laughed and smiled the whole time. His dad just beamed.
Liz and I were almost in tears listening to the father, but the man wasn't sad. He told us perhaps the most moving thing we've heard since the beginning of this process: No matter what happens, if your kid is happy, that's ALL that matters.
His kid is happy. So is ours.
Monday, October 25, 2010
A little setback...
We went to the doctor today for the follow up visit. The swelling was pretty severe and the doctor ended up having to drain it. He took a lot of fluid off, and there is still some left behind. They wrapped her head tightly and we have to see the doctor again on Thursday. If the swelling continues, there is talk of additional surgery, but we'll cross that bridge when we get to it. The doc said that the main abnormality on the CT scan was the fluid collection. We forgot to ask if we still need the MRI on November 5th, in the wake of them having to drain the fluid. But, we'll ask on Thursday when we go back. We're praying that Lily doesn't have to endure anymore surgery, but the collection of spinal fluid on her scalp was pretty bad. It looks better now, but there is still some fluid there. We'll post more on Thursday as we here more about what's going on. Right now, Princess Goofball doesn't seem that affected--as you can see in the picture. Her two favorite animals got bandaged too and she's been walking around the house holding them up to her head and calling herself "Triceratops." She's a nut.
Sunday, October 24, 2010
Saturday, October 23, 2010
Friday, October 22, 2010
Morning Fall Walk with Lily...
No snow last night--but it was nice and crisp this morning for a walk outside!
Thursday, October 21, 2010
Sunday, October 17, 2010
Saturday, October 16, 2010
Wednesday, October 13, 2010
Winning prizes at Adventure Landing today!
We went to Adventure Landing this morning and Lily won lots of prizes!
Monday, October 11, 2010
Saturday, October 09, 2010
Saturday Afternoon...
Andres came over last night and he and Lily played on the iPad together. Today, Lily helped clean up the wildflowers we planted in the spring and we cut some of them and brought them inside for Lily to make a bouquet out of!
Thursday, October 07, 2010
Wednesday, October 06, 2010
2 Months Later...
It was two months ago today that we found out.
This rollercoaster seems to be less scary now than it was then, but we're still on the ride for awhile we think. We're waiting for the next CT scan at the end of October to see if the little piece of whatever is still there is active or not. For now, things are okay. She seems to be fine cognitively and has been even more verbal than before the surgeries. Her right side is a little shaky still, but not abnormally so, just every once in awhile. She has headaches every now and then, but she has quite a bit of fluid still lying under scalp, and it's tender. We're worried about the fluid, but the doc says as long as stays put and doesn't leak, we should be good. We kind of think we'll end up back at the doctor before our scheduled appointment, as she has been having a little fever the last couple of days, but seems to be acting fine. The fluid is also shifting underneath her scalp. We're trying not to be hypercritical about every little thing, but we're still watching her like a hawk.
Day to day has been pretty good though. We've been able to go out to eat, visit friends, and she's stayed with Grandma a couple of times while Liz and I get back into work mode. It's hard to believe two months have passed--what a whirlwind!
We sincerely appreciate every single prayer, note, gift, hug, and thought. We have been so blessed to be surrounded by the people we love.
Also, as an aside, our friend that keeps Lily some during the week (and will keep her again when she's all better!) happens to go to our brain surgeon's church. She said that she went up to him at church and hugged him and told him thank you. He responded that he was working with a higher power who was in charge of everything!
Thank you to everybody for the continued support...
-Mike, Liz, and Lily
Sunday, October 03, 2010
Friday, October 01, 2010
What a difference two weeks makes!
Lily is going back to her own bed tonight in her new Frog Jammies. Kinda hard not to cry everytime we look at her...but we are so grateful. More grateful than we've ever been.
Lily Rakes The Leaves!
Lily has had a really good time the last couple of days. Her cousins Nicky and Emily came over yesterday to see her and brought her Princess Presents and Candy! Today, our neighbor Isaac came over for snacks and to watch Charlie Brown's Great Pumpkin. Then, she went with Grandma and Granddad to eat fish at Smokin' Joe's up in Niagara County! (Where she ate all of her fish and 1/2 of Grandma's too!) When she got, she wanted to rake the leaves in the front yard--so we did! Now she's napping...worn out from all of her adventures!
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