Friday, November 26, 2010

Christmas tree

Lila was a big help picking out the tree...

Lila's first tree. She likes the lights. It's adorable.

Happy Thanksgiving

Happy Thanksgiving! We had a wonderful day with great family and yummy food!

four months!

Tuesday, November 23, 2010

Doctors update

We saw the ophthalmologist and the neurologist today. For the most part it was a pretty positive experience. Here is the update:
Ophthalmology: The pressure it up again in her left eye, but the doctor is not to concerned because it's doesn't look too swollen. He thinks that the reading may have been off because she was wiggling, and upset at having a plastic probe stuck to her eye. After we got on her contacts (the right one doesn't fit very well and we had to order up some new ones that wont be here for a week and a half ) the doctor spun a white and black wheel in front of her eyes. My heart sank, it didn't seem like she noticed it at all, but apparently I don't know much about eyes, the doctor said that she gave a visual response, kind of like a reflex. He thinks this means that her vision is developing! He said he was very encouraged by this. What wonderful news! I was so thrilled to hear that and it proved to me that even if she isn't looking and responding it doesn't necessarily mean that she isn't seeing.
Neurology: We saw our neurologist who seconded the opinion of Dr. Dries and thought that vision loss would not be Lila's issue. He thought that she would develop it in time! Yeah! He went over her MRI with us and pointed out the area where the corpus callosum should have been and the other area's of her brain. He was concerned however that Lila's head size is small and the ventricles in her brain are large. He thought this could cause him to speculate that Lila has some sort of syndrome. He suggested that we start genetic testing to see if there are any abnormalities. Scary! He also gave us a referral to an early intervention clinic.
The good thing was that we took the dream team to the visits. Quinn's dad and my dad where there. My dad said that I shouldn't focus too much on the syndrome scenario. There may be nothing, or just something that will cause learning and developmental delay. The great news of the day was the vision though. I hope we will continue to jump leaps and bounds.

Saturday, November 20, 2010


I wish I could be inspiring. There are all these blogs out there with very inspiring mothers. Maybe someday I will get there, but in my quest to deal with what is going on in our family I have come across some inspiring stories and quotes. I thought I would share a few since this blog is mostly my journal and it's a place to put my thoughts.
I read a story (in Elle magazine of all places) of a little girl who was hit by a car. There was so much damage that they had to remove 2/3rds of the left side of her brain. While in recovery she had a massive stroke. The doctors put her in a medically induced coma, took her body temp down to 33 degrees and told her mother to expect that her daughter would never walk or talk ever again and to prepare herself for a life with a very disabled daughter. I wept as I read how this mom went through all the stages of grief. I can relate to the idea that life will not be what you thought and mourning that loss. One day in the hospital as the mom listened to her daughters roommates plug being pulled and the sobs of the parents as they held their daughter as she passed, she decided that she had to have hope for her daughter. She wrote down a little mantra everyday to get her through, and would say it to herself when she felt hopeless. Four months later her daughter woke up and talked, eight months later she walked to her mom using a walker. Miracles happen, and until I hear different I have to believe that there is one in store for us. So I have copied this mothers mantra and it is on my door to the outside and everyday Quinn and I say it:
Lila is going to see. She will have a long, healthy, happy, normal life.
She will be a miracle child and grow up to inspire others.

My mom gave me this next quote. Again from an inspiring mother and it has helped me.

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:
"When you're going to have a baby, it's like planning a fabulous vacation trip- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland."
"Holland?!" "Holland?!" you say, "What do you mean Holland?" I signed up for Italy!" "I am suppose to be in Italy." "All my life I have dreamed of going to Italy."
"But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place."
"So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandt's."
"But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, 'Yes, that's where I was suppose to go. That's what I had planned.' And the pain of that will never, ever, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."
-Emily Pearl Kingsley

And of course, Lila. Simply put. She inspires me everyday.....

Thursday, November 18, 2010

Football trip 2010

Yo Yo Yo Quinn here postin on the recent bro getaway. Ah Chicago, my city. A view of the Chicago river and Wacker Rd.
The Magnificent Mile, ie Michigan Ave.
The WGN and Tribune buildings.
We were about 4 blocks away from the court at the Bulls-Warriors.
Had to visit the Holy Land. The field was setup for the Northwestern Illinois football game
Billy Williams. One of my favorites
Heres the famous Addison stop in front of Wrigley
3 Cheers for go Notre Dame!
Touchdown Jesus. Im pretty sure Jesus still loves you more Coug fans
Da Bears Game. Bear Down Chicago Bears. Farves sucks
This trip rocked. It was sad to see the Utes get smoked but my first Bears game was awesome. Chicago was celestial and the only thing missing was my gorgeous wife and perfect little Lila. I missed the heck out of family. I guess I'm just turning into a softy.

Thursday, November 11, 2010

sorry for so much...

I want to apologize if I haven't been the best friend lately. I know that I have really neglected friendships, I am just so consumed with all things Lila that everything else is on the back burner. Sorry if I haven't commented on blogs, it is just I am having a really hard time looking at everyone's normal healthy children. I never thought I would be one of those people who can't be happy for others but I have found that it is a little painful to see healthy kids, especially ones that are around Lila's age.
I am so sorry to Lila. I am sorry that I stress so much that I am missing out on the beautiful everyday things that you do. I hate that sometimes when I look at you I am scrutinizing your eyes and if they are moving right instead of looking at what a pretty blue they are and how they are framed by the most gorgeous eye lashes, they are so long they almost look fake. I realize that since the beginning of the eye drama I have stopped taking as many photos. These are what these photos are for. These are some of my favorite little details that I have not yet shared. I have a gorgeous baby.
I am sorry to my family. Especially to Quinn, my mom and Kelli. You guys have been so positive and have always listened to my incoherent sob fests and tried to reassure me that everything is going to work out. I really need to hear that. Thank you.
This is how I feel these days, I feel like I have a little black monster that lives next to my heart and all day it sits and just gnaws on it. It's constant and I can't seem to think about anything else. When I get good news it stops for a moment and then slowly creeps back and starts to chew again. Someday I hope he goes away.
Update: We went to the doctors to check her pressure and the left eyes pressure wasn't down but the right was up so as long as they are equalizing than thats ok. I think we are all a little disappointed that we aren't seeing more of a reaction with her contact. Her right eyes contact will be in next week, hopefully having the two of them will make a difference. The doctor did ask about her overall development, which she is pretty behind still. He suggested that we see the neurologist again, speculating that there may be more going on then we think. He thought that there could be something going on with visual cortex. That one threw me for a loop. Is this ever going to end?! I can't get anymore bad news! We made an appointment with the developmental pediatrician as well. Unfortunately it's not till December 15th. We don't know if she is just behind because she is missing her corpus callosum and she will just catch up or if there is something else going on neurologically. We just have to wait, for the next couple of years...

(thanks Lyndsay for making this gorgeous headband for Lila)

Wednesday, November 3, 2010

no 2nd surgery for now...

So Lila didn't end up having surgery today. Once again the doctor decided not to go ahead after he examined her under anesthesia. He took pictures of her eyes and thought that the cataract on her right eye was not bad enough to risk the surgery. The pressure in her left eye is up a bit and he was a little concerned about her developing glaucoma. The pressure change might just be from the steroid drop that we are using, so we cut back on that, and he needs to keep checking her out over time. So we are getting in a contact lens for the right eye this week and we will keep hoping that we will start to see some reaction from her.
The good news from today is that for the first time the doctor told us that he believed that she would have sight. Something that he has never said before. Every time I have asked his opinion he just would reply that we would have to wait and see or that he couldn't predict the future. But he told us today that since Lila hasn't developed strabismus (where the eyes wonder or don't line up) he felt like that was a great sign that she would have some sort of sight. I believe his exact words were I don't think she will have severe vision loss. I can't even tell you how amazing that was to hear! I am still trying to keep my elation in check because we haven't seen a big reaction from her wearing the contact but we are really hopeful!

Monday, November 1, 2010

such a trooper

This little girl is such a trooper! She has been through so much and she has been such a good baby. I am in awe by her. She didn't even cry when she got her last IV. She has been such a little sweetheart, which makes it easier on her mom! I am so blessed to be her mom. She is incredible.
We have surgery number two on Wednesday so please remember us in prayers. We have been putting in a contact in her left eye for a few days. (I got it in for the first time today!) I am trying not to get to discouraged that I haven't seen much of a difference in her behavior. Quinn says that since the eye is one of the last things to develop in kids we could be waiting for some time to see results, also we are still having to dilate her eye with eye drops, so that might be effecting things. Life is still an emotional roller coaster, some days I have so much hope and peace and then the next day I am sobbing in a heap on the floor. I just adore her to pieces and want every opportunity for her! Let's just hope that we see results soon.