Quinn, Kristi and Lila

Thank you to our anonymous friends

2012-01-23T18:27:00.000-08:00

Thank you to our anonymous friends who dropped by a present for our little girl!! It was so touching and was just what I needed.
This evening an adorable little boy knocked on our door and handed me a gift bag that included this sweet little lion and this note : (I hope that they don't mind that I share, I would ask you if I knew who you were but I thought your gift was very inspiring)

Dear Quinn and Kristi,
You don't know us. We heard about you a couple of months ago through a friend of ours who was one of your nurses at St. Marks hospital when your sweet Lila was born. We read a little of your blog and you have been in our thoughts often since then.
Today, January 23 is the 2 year mark of the birth and passing of our little girl. She was born 18 weeks premature. She graced us with her spirit for a little more than an hour then peacefully passed away as we held her. It has been 2 years filled with tears and healing. As sad and awful as losing our angel was, all she needed was a body for her eternal progression; and we are honored to be part of this great process. At the time, we were as close to heaven as we will ever be. There are few people that have experienced that power. I'm sure you guys are two of those people.
In reading of and listening to others experiences with grief and loss concerning their children we came across the story of Ryan's lion. Ryan was a young infant about to undergo heart surgery. Somebody gave his parents a little stuffed lion to give them courage to get through the pain and fear of caring for their sick child. After the family's ordeal had ended they decided to pass the lion on to someone else who needed courage and strength. The lion has since been passed around to many people. We don't have the original Ryan's lion but we wanted to continue the lion's legacy for giving courage to others and do something special on our special daughters birthday.
Your baby girl is so sweet. We could feel it just looking at her pictures. May god bless you and give you courage in caring for your special angel, and know she will always be yours.

particularly cute Sunday outfit.

2012-01-23T17:55:00.000-08:00

Lila got a lot of compliments on her outfit for church on Sunday so I thought I would capture it for my scrapbook.....

I thought I was doing pretty good this month, what with Lila turning 18 months and all, but at church they asked if Lila wanted to go to nursery since she is now on the rolls. It took me back a bit. How can my little one be old enough to go to Nursery? Every milestone is like a death in a way. You would think that I would be starting to get use to our different way of life but I am always surprised by just how painful it still can be.

Another sweet angel baby....

2012-01-20T19:58:00.000-08:00

We got to hang out with our dear friends Eliza, Caroline and Nikki today. We LOVE these ladies so much. They inspire me to no end. Miss Eliza has MLD, a terrible genetic condition. She, like our little miss, knows how frustrating it is when your body doesn't work the way it is suppose to. She is an angel and has such an amazing spirit.
Her amazing Mom Nikki has been an incredible support to me and frankly is one of my hero's! She has handled all of life's trials with faith, patience and grace. She also has looked to reach out to others and has helped them to cope with their trials a bit more easily. Some day I hope to emulate her in some degree.
To say goodbye for the day I laid Lila next to Eliza and when their hands touched Little miss held on to Eliza's hand. I couldn't help to wonder what might be passing between these two perfect souls. I felt in awe by them. How amazing these two little angel babies are, far too perfect for this world.

If you want to find out more about Eliza, her amazing family and MLD click here

Missing her cousins

2012-01-19T19:29:00.000-08:00

I think since we have been home Lila has been missing her Cousins attention. She has been talking and seeming to look around waiting for them to come talk to her. Today she was lucky enough to go spend some time back at the cousins house while Quinn and I went to a movie. THANK YOU!!!
Evie was so excited when we got there. She loves to hold Lila. When we were leaving she whispered to her mom, "Will you ask Kristi if we can keep her?" So sweet.

In a kissy mood..

2012-01-19T17:46:00.000-08:00

One day on the trip little miss was in the kissiest mood. I LOVED it. She kept popping her head up and giving me loves, then later that night she was giving Kelli lots of love. It was so adorable.

Happy Birthday Kelli

2012-01-19T17:38:00.000-08:00

Kelli had her birthday while we were down there. Happy Birthday! We love you

riding Bikes

2012-01-19T17:34:00.000-08:00

Las Vegas

2012-01-19T16:54:00.000-08:00

We headed down to Vegas for a day. We had a lot of fun.
We made a wish at the fountains.

We loved the rainbow from the fountains
Watching the fish at Caesars
waiting for the water show

We had a small dance party in the bathrooms. Thank goodness it was just us
Sweet Benny. Stuck with all the ladies. He was such a good sport. Only once did he have to retreat in a room to be alone and watch star wars.
I'm sad that I didn't get any pics of Benny holding Lila because one of my favorite moments of the trip was when he was holding her. He said I don't know if Lila likes me very much and right then Lila put her hand right on his heart. The little girls started jumping up and down and saying, "see, she is trying to say she loves you."

St George

2012-01-19T16:08:00.000-08:00

We headed down to St George last weekend to at least soak up a little sunshine. I think that St George is Lilas Disneyland. She has so many friends wanting to play with her 24 hours a day. She is like a different little girl. She is so so happy down there. She has an Auntie and Grandma always willing to cuddle and three cousins so excited to play. Those Liston kids are so sweet to Lila. They teach me about her. I never thought that Lila was so expressive but those kids interpret everything she does for me. She is letting them know exactly what she thinks and feels. I can't even express how much it warms my heart. Lila my never have peers for friends but she has true friends in her cousins. I wish that Lila could have some siblings that could be just as good of friends with her.

It also fun to get a little silly
Gracie told me to take this pic and title it "best friends". We are so blessed for these kiddos
Lila was constantly being touched and played with. She loved it.

Swimming in the pool. I dipped little miss toes in and she gave us a smile.

playing with Daddy

2012-01-19T15:59:00.000-08:00

Quinn always finds new and interesting ways to entertain Lila. Not sure whats going on here but it makes for a funny pic!

a neurology update...

2012-01-08T18:19:00.000-08:00

We went and saw Lila's neurologist Dr. Filloux this week. We have been very blessed to have such a nice and accommodating doctor on our side. He has been so wonderful, we feel really lucky.
No new news from the researchers in the U.K about when they are going to publish. I want to email them but last time I got on their nerves they told me just to ask my questions to the doctors here. Its hard for me to learn patience.....
Lila has been doing motions like she is startled, and while at first I thought they were just moments of being scared they have started to turn into rhythmic and continuous motions. Dr. Filloux believes that these are seizures. So while I was thinking Lila only has seizures every couple weeks we now realize that she is having several clusters everyday. Obviously we are pretty sad by this new news, but we have started to take bad news in stride and just try and figure out what we can do to make Lila's life better. Lilas Doc gave us a prescription for some seizure meds. I haven't filled it yet. I am still on the fence of what I want to do. I hate giving her any more meds then necessary but I am also wondering if this may help her sleep and then she will be better alert during the day. I wish decisions about Lila were more Black and White but everything seems to be in this gray area.
Other than that we are thrilled to not be in the hospital yet (knock on wood!!!) Lila has been doing pretty well this winter season. Just a cold and a horrible spider bite! Poor thing. We know that there is a hyper little toddler in there just dying to get out. If you grab her legs and make her "run" she laughs and gets excited every time. She also loves to twirl and dance, especially with her daddy.

Happy New Year!

2012-01-01T07:19:00.000-08:00

Happy new year! We had a very low key celebration since the Little one is not feeling well these past few days.
2011 was a pretty rough year for my family, I am pretty glad to see it go. I feel slightly proud that I just survived it quite honestly. While it was hard we also had some wonderful moments and lots of beautiful smiles! Those smiles are what sustains me during the stormy days.
So here is to 2012! A new Year, a new start and hopefully with it good news and peace for my little family. And in case it is not, I hope to learn how to traverse the journey with grace, charity and hope.
I wish the same for all of you out there. I hope this next year is full of joy, happiness and peace.

last Christmas

2011-12-27T17:22:00.000-08:00

I was going through some photos and playing around with photo shop and here is a favorite from last Christmas. Just thought I would post it so I can keep it in my "scrapbook"

Christmas!!

2011-12-27T09:19:00.000-08:00

The cousins. We sure did miss Josh and Nick this year!
Checking out her new sparkle...

Best buddies
Look how adorable these sparkle Toms are!! So darn cute! They are a bit big. Lila's feet grow so so slow. Maybe in the summer....

One of the highlights of the day was Gracie. She was so excited to give me a present that she made for Lila. She made her this adorable headband that went perfectly with her outfit! Thanks ace-o! Lila loved it.
Lila in her Christmas best! she wore this sweater last Christmas too.

Lila with all her Christmas loot
This was my present of the day. Lila actually acknowledged and laughed at the mirror I got her. It made my whole morning.

Christmas Eve with the Thomsons

2011-12-26T16:06:00.000-08:00

I really did such a bad year this year of taking photos, luckily I can steal all of my sisters. Thanks kel.

Thomson tradition of seeing the temple square lights

Doing the nativity play..

My mom got these little candle holders that spell out noel before I was born and they are such a fun Christmas tradition. I noticed this year that the "L" is the angel. How perfect for our little angel Lila.

Christmas Eve with the Kimballs

2011-12-26T15:26:00.000-08:00

Lila loved her Giraffe Snuggley from the Jory K fam!
I did the worst job at Pictures this Christmas!!! I got to involved in the activities and forgot all about my camera! Here are a few ...

The kids so excited for presents

Lila kisses

2011-12-26T15:07:00.000-08:00

I love my Lila kisses. When I kiss her she usually turns to give me a big, sloppy kiss and sometimes a bite to go along with them....
... and then I love the face she gives when she is done. Like ok mom, please stop.

Thank you "N"

2011-12-21T16:04:00.000-08:00

Lately I have been feeling a bit blue. I don't know if its the weather or because this holiday season is not what I pictured when I imagined having a toddler at Christmas. Either way I have lost sight of the meaning of this life. I know Heavenly Father gave me Lila to make me a better person but sometimes I would really like to be just mediocre. Just a normal person with normal kids. I wouldn't even mind if she was a bit naughty just if she could be alright. So today I got a reminder of what I need to aspire to.
A dear friend gave me a gift today and it touched me in more ways than one. We are in similar situations. We are both going to loose dear sweet baby girls, our little angels, and yet she is constantly lifting me up. Today she gave me the gift of having photos taken of little miss. I cannot tell you the value of Photos in my situation. Knowing I will have images of Lila after she is gone is amazingly comforting. Not only was this gift worth its weight in gold, it was a lovely reminder of what this life is about. Helping each other through this life and serving one another. She is definitely something to aspire to. She has a gift of helping others and knowing just what to do and say to make them feel better and strengthened. I hope someday I can be like her.
So while I don't know how she would feel about me using her name, since she is local and knows some of you,(I'm sure a few of you have guessed) I just want to say thank you! Thank you for being a true friend and for living in Holland with me!

Thank you Sandie, Mark and Matthew!!!

2011-12-18T12:07:00.000-08:00

Lila got her first package in the mail. Our dear friends Sandie, Mark and Matthew from Oregon sent Lila an adorable outfit, jammies and some delicious trader Joes cookies (why cant we have trader joes in Utah?) Doesn't she look adorable? They are so nice and cozy.
Sandie has become one of my dearest friends. We met because she found my blog and she has become an invaluable resource and support ever since. Her son Matthew has a missing corpus callosum, and back when we thought that that was the only reason, besides the cataracts, that Lila was behind Sandie was constantly emailing me and giving me words of encouragement. She spent hours researching for me and trying to find other kiddos like Lila. She even had Vici syndrome on a list of possibilities way before I googled it and asked Lilas doctors about it. She is so amazing. She goes out of her way to lift others and help them through difficult situations. Its so wonderful how people come into your life to help you along. She is one of the most Christ like perosn I have ever known and I feel so blessed that she found our little blog and reached out to us. She is an example to me and something I feel like I can aspire to.
Thank you Sandie, Mark and Matthew for Lilas and our presents. That was so kind of you!
This was a big smile but my camera time is slow. So this is just the end of it.

favorite color?

2011-12-18T11:55:00.000-08:00

Christmas is such a great time to find toys for the little miss. I got these bows and put Velcro on the back so they can go on her board. Yesterday she was interested in the bright pink bow, I kept moving it around on the board to see if she would still go for it and she did! I guess she is a girlie girl deep down.

Enjoying the tulips.....

2011-12-11T18:07:00.000-08:00

This week I was reminded why I have the great husband that I do. I have been feeling a bit panicked lately about getting going on adding to our family. I would rather not have a period of time where I am no longer a mother. All options of how to get some more little spirits in our home are going to take a while and so I feel like we need to start some process, whatever that may be. The dear researchers in the UK are just sitting on that vital information of where the Vicci gene is and will not release it till they publish and so we can't, at this point, start on invitro. So one evening while discussing how many times that we could actually afford to do invitro I asked Quinn at how many kids he would feel like our family was complete. Quinn looked at me and told me that he felt complete the moment we got married and any children that we would be blessed to have would be a bonus. Talk about being humbled. I have spent far to many nights thinking that we have been shorted in some way. I feel so blessed with what I have. If Lila is the only child to bless our home how lucky we have been the past 16 months to have her. How blessed I have been to be a mother at all.
And so tonight my angel and I are cuddled under a twinkling tree listening to beautiful Christmas music (Thanks Nikki) and I am feeling overwhelmed by my blessings and of feelings of peace. I feel like I am walking through Holland tonight and I am enjoying my tulips. You special needs moms will know what I mean....
Thanks Quinn for always giving me perspective.

Cousin Cuddle time

2011-12-10T22:33:00.000-08:00

Quinn's sister Marissa called us today and said she was missing her Lila and to bring her over. So we tried out a new restaurant while the little lady spent time with her cousins. We came back to this. I thought it was so sweet. The iphone pic doesn't do it justice. Lila and her cousin Poppy were cuddling in her mama's bed.
We are so lucky that Lila's cousins treat her like she were just another normal kiddo in the family. How wonderful and loving children can be! We are so blessed.

cute beanie

2011-12-10T22:27:00.000-08:00

I had to post this adorable beanie! Girls are so much fun! Little Miss looks so chic.

The Nutcracker

2011-12-03T20:49:00.000-08:00

We went and saw the Nutcracker. I haven't seen it since I was a kid. I loved it. Ballet West did a wonderful job. What a fun Christmas activity, it definitely got me into the holiday spirit!
We saw in the program that Ballet West does a performance before opening night for a special needs audience. How sweet. Maybe in a few years we will take little miss to it to enjoy the music.

sweet friends

2011-12-03T20:46:00.000-08:00

These two have a special connection. Lila is lucky to have a cousin who loves her so unconditionally. All of her cousins are so sweet, but Gracie is especially infatuated.
Look how funny little Miss's hair is! I swear I try! But that tell tell Vici Mohawk just wont stay down.

festival of trees

2011-12-03T20:36:00.000-08:00

I realize that the greens in this outfit don't really go together but I was trying to make her as "Christmasy" as possible.

Festival of Trees! I really was debating if I was going to go to the annual Primary Childrens hospital fundraiser this year. It is a bit too close to home these days. There are many many trees dedicated to wonderful angels who have passed on. But I didn't want to miss out on tradition just because of our circumstances. I did pretty well until one tree covered in butterflies was dedicated to a sweet little girl whose picture showed her cute wrist covered in bracelets. But I pulled it together and I am just glad that we still have Lila with us now. Someday we will do a tree in honor of Lila and try to give back to the sweet staff at Primarys.

Getting into the Christmas Spirit!

2011-11-27T16:43:00.000-08:00

I Love putting up the Christmas Tree!! Especially since Lila loves the lights. I wish we could have it all year round.
She watched the lights twinkling all night long...

I thought I would post some of our favorite decorations. One of my favorite most cherished decorations is the nativity that I got while in Kenya.
Unfortunately the llama and Cubbie got into a fight one year. I think Cubbie won.
This year we have a brand new cherished keepsake. My mom's friend Freda made us this beautiful stocking for Lila. I was so incredibly touched that she would do that! I have never met her but my mom has told her all about our sweet angel. We will put this out for years to come, even after Lila has passed. What an amazing gift!
While going to pick out our tree Lila was supporting her daddy's team! I think this headband is so adorable. Thanks Kathy!
Another keepsake. A clay nativity that Quinn got in Chile. It s so fragile I am so glad its still in one piece. (knock on wood)

happy thanksgiving!!!

2011-11-26T20:40:00.000-08:00

Thanks Grandma and Grandpa!
Kimball, Joe, Lily, Poppy and Marissa
Poppy, Kimball and Eli
Introducing new BABY REMY!!!! We are so excited to have this little guy in the family. He joins his adorable three older brothers. He is so tiny and such a sweetie. I thought he looked just like Eli but now I am leaning toward Jax. Either way he is so cute!!!
Lila and Lily~
Kathy, Jory, Jonah and Jax
Capree and Brady
I love when Lila falls asleep. (probably cause it doesn't happen a lot) but she looks so cute. Quinn calls this face "catching moscas" Aka Catching little flies...

Thanks for a wonderful Thanksgiving!

early thanksgiving

2011-11-26T20:14:00.000-08:00

This is where Gracie ends up most family nights. I love it. We are so blessed!

Gracie was so sweet to lend Lila her Giraffe. According to Grace they are Lila's favorite animal. She told me one day at the Zoo that we had to make it to the Giraffes for Lila, I asked why? She told me they were her favorite animal. I said how do you know that? She said, she told me when I asked her...
Thank you for a wonderful thanksgiving!

This picture makes me happy....

2011-11-21T20:53:00.000-08:00

Genetic results from London

2011-11-15T09:46:00.001-08:00

The geneticists and researchers in London called our doctors last week to tell us the results of the blood work that we sent off to them. Lila does indeed have the mutation that they believe is responsible for Vici Syndrome. It is our first abnormality in all of the genetic work up that we have done. They also found in our blood where Quinn and I are carriers. It all will become much more official once they publish, but as our neurologist told me this just makes him 99.9 percent sure its Vici instead of 99 percent.
This is so bittersweet for me. I guess its the end of our searching, and it does give us hope that future children are possible through IFV and genetic screening yet it means that my sweet little girl will not be with us for very long. I truly can't imagine being without her. The only silver lining for Lila is (and I wont even try to explain because frankly I really don't even understand it myself) they can tell, by the type of mutation, that she is on the less severe side of Vici. Hopefully this means we will have her longer than most and that she will accomplish more than most Vici children.

Our amazing David Perry Video!!

2011-11-01T18:51:00.000-07:00

Here is our wonderful Video by David Perry! ( I explained the story behind this video a few posts ago) What a wonderful gift.
Thank you again David! You will never know how much this means to me.
Thank you Rachel for setting it up!

If it says you need a password its : Lila (case sensitive)

Video

Happy Halloween!!!

2011-11-01T10:20:00.000-07:00

Lila was a strawberry fairy. So adorable.

The Kimball cousins. Poppy, Lily, Lila, Jonah, Kimball, Eli, Jory (the Uncle) and Jax.
Gracie, Lila and Evie were pumpkin perfect in orange.

This is what Quinn wore to work. I guess its nice to be part owner....

Trick or treating at Grandmas and Grandpas!

Calder, Evie, Grandpa, Grace, Grandma, Lila and Ben

Happy Halloween. It was such a beautiful day! Its hard to believe its now snowing today. That's Utah for you.
Lila was gorgeous as a little pink strawberry fairy. She was kind of having a rough day. I think her teeth were bugging her so she was very teary, poor baby. She was also coming off of a bad day on Sunday. She had probably over ten seizures. Its so weird, we wont see a seizure for like three weeks and then all of a sudden have a rotten day. She is such a little trooper though. Still giving me smiles through it all.

a sweet experience

2011-10-28T09:19:00.000-07:00

My cute neighbor Rachel called me a week ago and said that she had been thinking of ways to help out our family. She coordinates weddings and decided to talk to her favorite vidoegrapher, David Perry to see if he would make a film of our family. I can not tell you how much that touched me. I was crying so hard when I told Quinn I think he was scared at first that something was wrong. I am always amazed by how sweet people can be and it always is so nice when they reach out to us and Lila. Thank you Rachel!
Before David got there I was fretting about not catching any smiles. Lila has such a sweet personality but she is the worst performer! She has been having a good stretch the past few days, smiling and laughing but when she doesn't want to smile there is nothing you can do to get her to crack one. I sat and prayed that Lila would show the camera a few smiles so that we could catch them for the future. Right as David was suppose to show up I could tell Lila was going down. She was sucking her fingers and her eyes were rolling. She was a sleepy kid. I was so disappointed. I thought sure she never sleeps except when we do family pictures (we didn't catch one smile with Lex) or this film. I was so bummed I hate to admit that I made an angry comment to Quinn such as, whats the point of praying if you never get helped out? As David set up I was so sad to know there wouldn't be much to shoot. Just as David got set up and pushed the on button I pulled Lilas fingers from her mouth. Immediately Lila's eyes shot open and she looked right at the camera and gave several HUGE smiles. She smiled for several seconds and then was done and didn't crack even a grin the rest of the time. Quinn gave me a pinch and said, you were saying? I was so grateful I was holding back tears as David told us that he caught the smiles. Good lesson for me in not giving up on the power of prayer.
All in all it was an amazing experience, David shot us playing and kissing Lila and even filmed us talking about her - you can just imagine how that went, I hope you can even understand me through all the blubbering- I can't wait to see the finished product. I will hopefully figure out how to post it here so I can share it.
Another cool aspect of the day was meeting David. He is an amazing film maker who is also an incredible person. We actually just sat and chatted after filming about his experiences and his life and I was blown away by his faith, his dedication to the gospel and to making peoples lives better. I was truly envious of his unwavering faith. He and his wife are trying to adopt a little girl from the Ukraine who is HIV positive, the government is giving them a hard time but he has faith that everything that is suppose to happen will. That is a concept that I am struggling with. He was so kind. I mean here is a guy who is doing fundraisers to adopt his daughter and yet at the same time he is donating his talents to help us remember our sweet angel. He also makes films that he shows to the UN about adoption and the struggles of international orphans. He was named in the top 25 international best film makers for events so anyone getting married should snatch him for their wedding! Please check him out here.
Thank you David! We really appreciated all your time!

Cute Grace

2011-10-27T22:00:00.000-07:00

This just made me so happy. As I have said before Lila and her cousin Grace have a special relationship so when Gracie made her star of the week poster I shouldn't have been surprised that somehow Lila made the list. How adorable is it that her favorite thing is to play with her cousin Lila? so sweet.

sugar overload.

2011-10-27T21:48:00.000-07:00

Lila and I wanted to surprise Quinn with doughnuts and balloons at work on his birthday. After we went to BamberryCross to get a dozen and a half yummy doughnuts (wanted to share with co workers) we got a call from Quinn, he wanted to tell me the funniest story. His mom had surprised him with breakfast pullaparts that morning and while they were polishing them off and all discussing how they couldn't eat another bite Marissa, his sister walked in with another plate full of yummy pullaparts. Crestfallen I told him I was in the parking lot with doughnuts about to walk over to Smiths to get Balloons. I guess we were all on the same page with this one. At least Quinn knew people were thinking about him on his day!

Happy happy 31st love!

2011-10-26T07:03:00.000-07:00

Happy happy birthday my penquinn love!
Quinn, I love you so much. I hope that you have a wonderful birthday and that you know just how amazing you are. You have made my life beautiful and so full. I am so lucky to have you. You make every day better. I am always in awe of how you handle whatever life has thrown at us and you have done it with such grace and strength. Thank you for all you do for me and for everyone around you. You truly are incredible.

dragon Moms (I like that)

2011-10-18T12:32:00.000-07:00

Dear Michelle sent this to me today and it obviously struck a chord with me. I think she tells it so eloquently and with so much truth that I thought I would share.

Notes From a Dragon Mom

Alexandra Huddleston for The New York Times

Emily Rapp and her son, Ronan, who has Tay-Sachs disease.

By EMILY RAPP

Published: October 15, 2011

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

A year ago today......

2011-10-14T15:34:00.000-07:00

A year ago today I held back sobs as Lila's ophthalmologist told me that she had bilateral cataracts. -I can't believe that it's only been a year. It seems like we have been "primary parents" all our lives, dealing with doctors, tests and illness.- Gone was the notion that I had a perfectly healthy and normal little girl. The days, weeks, month and year to follow continued to have more and more bad news. Never could I imagine at that moment just how horrible it was going to get. It was far worse than my worst nightmare. It seems like we haven't hit that bit of good news that our family is so desperately hoping for.
With learning to deal with constant mourning I am trying to focus on just how blessed I really am. Despite it all we are so blessed to have Lila. With each smile I am filled with gratitude that she has come to our home. I am so blessed to have Quinn. For the rock that he has been. For being the most compassionate, patient and loving man in the world. I couldn't believe that we could grow closer than we were but this has brought us even more together. I am grateful for wonderful family and for good friends, you quickly find out who your true friends are when going through something like this. Thank you to all who have reached out, I know I probably don't make it easy sometimes. And finally I am so grateful for the knowledge that my daughter will look at me one day and know that I am her mother and she will be able to show her little personality to me more fully, not in this life but in the one to come. I look forward for that moment.

Just like mommy

2011-10-12T16:35:00.000-07:00

Sugar daze?
Lila's first candy sticky face.
I put this chunk in her mouth and she laughed out loud!

since Lila can't take anything by mouth we are trying to introduce flavors so that she knows that her mouth can do more than chew on fingers. Usually she hates everything that i put in her mouth to taste but today I found a winner. Cotton candy. She loves it, just like her momma. She was laughing and kicking and rooting for more. It was super fun.

The Witches

2011-10-12T15:37:00.000-07:00

Lila loves the sun. Every time you take her out she shuts her eyes tight but gets a huge smile. This is at the end of a smile. They are hard to catch sometime...

Lila dressed up like a ballerina to go look at the witches. She has another costume for Halloween. We are going all out this year. I never know if this will be her last holiday so we have to make them count. Quinn says I'm being a bit dramatic when I say that but its the truth.

I LOVE my moms Halloween sweater. It brings back my childhood.

Its was our annual witches hunt! I love Gardner Village and it was the most gorgeous fall day.
I must admit this year was a bit rough for me. Last year when we went to Gardner Village we had just found out about Little miss's cataracts and I was really down (remember the cute yellow glasses?) but I kept thinking I wish I could see to next years witches trip because then I could see how much she can see and that she will probably be ok, and she will be able to enjoy all the cute decorations. Never in my wildest dreams did i think that there was more going on with my precious child, that we would be where we are today. I guess its a good thing we can't see our futures. It does make me really nervous for what is to come though.
Regardless Lila was the prettiest little ballerina, and I was in awe of the beauty of the day.

Robyn's quilt group

2011-10-12T14:32:00.000-07:00

A couple of weeks ago I asked Robyn if she could help me make some cute Quilts that I could use to put Lila on when we are out and about. She was so sweet to make it her next quilt group project. Lila and I went over and met the ladies while they were making them today. The women were so nice and the quilts were adorable. Thanks so much!

Flashback 2005!

2011-10-05T14:07:00.000-07:00

Look how funny! Tory sent this picture to me a little bit ago and I thought that I would post it so that I can add it to my scrapbook. This is back the year we got married, 2005. We look like babies. Tory, Mo, Quinn and I headed down to Las Vegas for a weekend together. We did synchronized swimming in the pool (I probably shouldn't admit that, but it was really fun) walked the strip, ate yummy food, saw an interesting show and got these airbrush tattoos of our significant others initial. Thanks Tory for sending me this!

The Zoo

2011-10-05T14:00:00.000-07:00

The last trip to the Zoo for the season! Thanks mom and Kelli. Little miss looked perfect for the occasion. -Thanks miss Grace for her cute outfit ; )

Kimball Family Pictures

2011-10-03T07:05:00.000-07:00

I tried to get more pictures to download last night, they never did and these ones took forever!! I could only get these two to post. Luckily they are my favorites! Poor Lila was not happy at these pictures. But they turned out great. Love you Kimball's!!! Thanks for being such a wonderful family. We couldn't survive without you.

Lila's Diagnosis

2011-09-16T17:52:00.000-07:00

Wow this is a long time coming. Where to begin? A few months ago while doing my own research, AKA Googling, I come across an extremely rare genetic syndrome called Vici (pronounced veechee) As I was looking at all the symptoms I became very concerned that Lila might have it. I called our neurologist up at Primary's to ask if we might have already tested for it so I could put my mind at ease. He called back and told me that he had actually never even heard of it and was hoping that I could bring Lila in for an examination. He told me that while Vici is genetic, they actually haven't discovered the gene for it yet so a test is not possible. They know it's genetic because families who have these kids often have other kids with the same syndrome. He examined her and told me that one of the signs is albinism of the retina but that Lila clearly didn't look she had it because of past tests. He said there is a chance though that she could have it, while not physically manifesting it and that you can do a VEP (a test we have done multiple times) to look for it. I was so confused, I thought that if she had it they would have found it already so I kind of pushed it out of my mind. We went on our trips with the families but this question of Vici kept returning to my mind. When we returned home we scheduled the VEP. I think we all thought it was a long shot. Turns out you have to do the VEP a certain way and look for a particular patterns in the brainwaves to see albinism and Lila did indeed have it. Dr. Filloux took this new information and consulted with all the specialists at Primary's and we did some more blood work. We met with him a few weeks ago where he told us that as far as Primary Children's hospital was concerned Lila did in fact have Vici Syndrome.
This has been quite the blow. Vici syndrome is devastating. Children with this syndrome tend to display sever developmental issues much like where Lila is right now, they are constantly sick and most heart wrenching of all, most die before their third birthday. The oldest living Vici child was eight and a half. As you can imagine there have been many many tear filled nights in our home lately. Not only has Lila been delivered a death sentence but since it is genetic and they don't know where the gene is, it is pretty much a death sentence for our future children as well.
We debated whether or not to go to the Mayo clinic, Dr. Filloux is pretty convinced that this is Lila's diagnosis and up until this point he has been extremely cautious. In the end we decided to go for a second opinion and had hopes that maybe they might find reasons why she might not have it. Unfortunately the opposite happened. When re-looking at Lila's MRI they thought that they saw even more signs of Vici, her cerebellum was small, her ventricles were very large and the ridges of her brain were not the same shape as each other. Some grew larger than others, another sign of Vici. They also think that Lila is having far more seizures than we think and just not manifesting them physically. Since they can't give a positive yes or no answer (since there is no test) they told us that Vici is the most likely reason for Lila's condition.
There is some hope on the horizon. After Primary's told us of their decision I searched for more families that might have kids with Vici. Turns out it is even more rare than we realized. With no more than Fifty documented cases. In the whole world, 50! Somehow I found a wonderful mother in Colorado who lost her son to Vici a year ago. (sadly he looked like Lila's twin) we have been corresponding and she got us in touch with some researchers in the U.K who are studying Vici. Our doctor has talked to them several times and it turns our the may be on the cusp of discovering the gene and they want Lila's DNA. They will test her and want her to be a part of their study. Good news but sad because they are saying that she sounds like their Vici kids. Hopefully we can get a clear cut answer if she has it and then also know the gene for genetic selection with future children.
Lila is so special. We have always known this. During these past 13 months I have been panicking over every suggestion as to why Lila is the way she is. When we were told that Lila has Vici I can't explain the peace that came over me. I literally felt as if arms were wrapped around me holding my heart together not letting it shatter. I am more convinced now more than ever that Lila is the most amazing angel, a literal angel is abiding in my home. I believe that Heavenly Father has given her to me for a small moment to teach me unconditional love, humility, gratitude, faith, patience, what is important, and many many more attributes. What a gift she is. She has brought me to my knees more than any other experience in my life and she has brought me more joy than I thought possible. I think Quinn described it well when he said she is like winning the lottery. We had a 50 into over 6 billion chance of having her, how lucky are we?
With this news we are definitely not giving up hope, we will continue to do therapy, and hope that she will break all expectations for children with Vici. We will love her everyday with our whole hearts for as long as we are lucky enough to have her with us on this Earth.
We want to thank everyone who has prayed for us, thought about us and have supported us through this trial. We love you all.

The Mayo Clinic

2011-09-16T14:43:00.000-07:00

The Clinic was pretty beautiful.
Downtown Rochester. Literally this picture pretty much is downtown Rochester. It's kind of a weird little town, tiny except for like three blocks. (The Mayo building is right in the middle)
Delta lost Bob (our beloved stroller) they sent it to Denver then to Salt Lake before making it back to Rochester. In the meantime they found us a wheelchair shop in Rochester which had to tide us over till we got Bob back. It was the tiniest wheelchair I had ever seen. It was pretty uncomfy for her and it generated a lot of stares, actually it was kinda depressing seeing her in it. We were so happy to see Bob once they found him!
I adore blown glass! This is in the Mayo clinic's lobby.
lots and lots of cuddling!
EEG
First Airplane ride!
Now this is kinda a weird picture to add to our trip but Quinn was pretty excited about his Peanut Butter, Bacon Burger. Disgusting. He loved it.

We went to the Mayo Clinic in Rochester Minnesota this week. We were desperate for a second opinion. We saw the pediatric neurologist, the geneticist and a muscle specialist. We took blood, froze DNA, did an EMG and an EEG.
As always Lila was a little trooper. She took all the poking and prodding in stride. Even giving the doctors a few smiles, something she doesn't always do for strangers.
We were so sad we had to do an EMG. It's a muscle test where they stick tiny needles into the muscles then give them little shocks to see how the information is transferred between the nerves. Luckily she was sedated. When she was coming out of sedation her heart rate was really high. The nurse told me sometimes all they need is mommy and put Lila in my arms. Immediately her little heart rate started to slow and then stabilized. This just touched me so much because sometimes I wonder if Lila even knows who I am. It made me so happy to know she finds comfort in my presence.
I think that Rochester was really great, not that we learned a ton of new information (I'll explain later) , but that we know we have covered all our bases and that multiple specialists are in agreement as to what is going on with Lila. It was also nice for Quinn and I to have a few days away to process through this new Diagnosis and have long hard talks about what this means for us and for our future family.

Sweet Lila

2011-09-10T16:40:00.000-07:00

medical records

2011-09-09T18:08:00.000-07:00

I've been getting Lila's medical records in order. No one year old should have that much paper work...
At least she will have the cutest medical records!

The End of an Era.

2011-09-03T09:35:00.000-07:00

One of my Favorite picture of them

Wednesday was my last day with the Johnson children. I have been their nanny for NINE years!!! I can't believe it. It so surreal.
We had a great last day (which I took pictures of but they wont download for some reason) we went to our favorite restaurant, Spaghetti Factory, played games and read books snuggled together on Williams bed. When Sara came home we were all sobbing, giving hugs and telling each other how much we meant to one another. It was pretty heart wrenching.
These kids have seen me through so much. Starting College, a bad first marriage, a divorce, going back to school, finding the love of my life, a wedding, apprenticing, getting my cosmetology license, our first home, going back to school -again-. two bachelor degrees, a beautiful baby girl of my own, her illness and subsequent heart break. They have been my little constants. It will be weird to go through life without seeing them on a regular basis.
I sure do love you guys! You are amazing. I know that I will still see you lots!

look who learned how to cry....

2011-09-03T08:30:00.000-07:00

For those of you who have never seen Lila cry (which is most people) here are the cutest Pictures. Is it bad that I think she looks so cute when she cries? But it is also a little bit heartbreaking. Lila has discovered Crying, about the same time she forgot how to sleep, and she has been going at it with gusto, making up for lost time. She can cry for hours, who knew? I guess we are now getting the "normal" new parent experiences.

Lila's first drawing

2011-09-03T08:11:00.000-07:00

our Vision therapist brought an ipad fro therapy this week. With a little help from mom Lila drew her first picture.

Snowbird

2011-08-29T20:24:00.000-07:00

Lindsey invited us to beat the heat and head up to snowbird to ride her tram. It was so gorgeous.

Thanks Z!
I love Lila's hair in this one. It's glowing.
What a pretty state.

pig tails and smiles.

2011-08-26T07:50:00.000-07:00

This was our day yesterday.....

picture overload!

2011-08-26T07:16:00.000-07:00

Sorry for a picture overload!!! But I stole some of Kelli's pictures, and since this is my family scrapbook here they are:

our last bonfire :(

We went to the sawdust festival in Laguna, one of my favorites. Above is a shot my sister got of my dad checking out 3D art. Too cute!

Someone made my mom this crown and she wore it all night! It was pretty funny. Love you Princess Pat!

Not quite sure what my brothers are doing in this picture, but aren't they cute!?

California

2011-08-22T06:46:00.000-07:00

Beach Baby

While this looks like a sad face this is Lila chatting....

Lots of Cuddling by the fire!

I adore bonfires on the beach! They are so fun and they remind me of my dating days with my cute hubby!
You would not even believe how much attention these little toes generated. Everywhere I went they got noticed.

This is our wonderful beach house. ( the one in the middle)
We wanted to take a picture with the siblings (below) so Quinn thought it would be funny to just have an in-law picture (above) we sure do love you in-laws!

Finally got a picture of Henry looking at me. He's not a fan of getting his photos taken.
Calder turned three on Tuesday. Happy birthday !!! we might have enjoyed his cupcakes more than he did : )

what a little trooper ! We tossed this little lady all over the map these past two weeks and she was just a sweetheart. Catching cat naps here and there she did amazingly.
Amazing. These two, simply put are amazing!

Eating at Matt;s favorite the Hat

Just relaxing

It was so funny, I kept trying to chat with my dad and the wind would blow his sun shade over. kinda hilarious
Getting in the OCEAN!!!!

Looking so cute in her Bikini
Gracie is just Lila's best buddy. She takes such great care of her little cousin, everywhere we went Gracie was there to talk to Lila, hold her hand and take care of her. Lila is so lucky!

Lila spent some time in her baby hut on the beach. Quinn fell asleep next to her
One of my favorite things about the last two weeks is snuggling in bed with the little lady. Here she is one morning giving me smiles, laughs and talking.

We had a wonderful time this week with my family down at Dana point in California. We were so lucky to be right on the beach. We boogie boarded, had bonfires, walked the beach, relaxed, ate and talked and talked. We were super excited to see Matt and his boys since we don't always get to enjoy their company. Thanks family I love you all so so much!

10 year high school reunion

2011-08-21T14:44:00.000-07:00

Anya
Brynn, Michelle, Lindsey and I (the only people I feel ok asking to take their picture! Thanks)

I had my ten year high school reunion last week. I cannot believe it has been that long! It's so funny to look back and remember myself thinking what I would be like in ten years when I graduated, it seemed like such an eternity away. It was great to see some people that I hadn't seen in a while. I wish that more had been able to come!
Thanks to Barb who put in so much time planning!!!

12 months

2011-08-21T14:31:00.000-07:00

In all of the birthday celebration I forgot to post Lila's last month shot. Here she is at 12 (Almost 13) months.
What a sweetie. This is obviously really painful for me. I never thought that we would have a twelve month shot that she wasn't holding her head up and being able to look at me.
Regardless, this is where we are and we move on. Here is what she CAN do at twelve moths:
She can smile. laugh. "talk" chew on her fingers, suck her thumb, move her arms and legs, stay on her side if put there (she has rolled on her own a few times) she gives kisses sometimes, she can push her head off my shoulder for a few seconds, she responds to light and still thinks sneezes are funny.

more sun valley

2011-08-15T21:43:00.000-07:00

Here are some photos that I forgot to post!

I love that Quinn and his dad have such a great relationship. He has taught Quinn how to be such a great dad.

Poppy the human puppy (as Q calls her)
We had a water bed in Sun Valley and Lila loved it! It held her just right I think. She fell asleep pretty easy on that baby. (I love when she falls asleep with a finger in her mouth)

Sun Valley !!!

2011-08-13T07:57:00.000-07:00

One thing that I loved about Sun Valley is that there is flowers everywhere! They are gorgeous!

we discovered that Lila actually takes naps in her B.O.B, it' my new favorite thing. Which is good cause she is outgrowing her carrier. - Isn't this outfit adorable! Thanks Robyn, It's a new favorite!
Taking the Gondola ride up the mountain.

Lila had pretty bad bed head so this is Quinn's idea of styling it. Kinda like a mommy cat.

We had lunch at the round house. I restaurant half way up the mountain. Todd, Robyn, Quinn, Lila, Marissa, Joe, Jonah and Kimball

Robyn, Marissa, Quinn, Joe and Jory
Jory, Brady (AKA Boz) Capree, Kathy, Jax and Lily
We dipped Little Miss's toes in the cold mountain lake. She jumped then gave us a little smile.
Chillin in our designer shades. Lucky baby, her daddy is already giving her the hook ups.
We took a ferry across the lake and wanted to hike up to Lilly lake, we asked the guy if we could do it in Lila's BOB. He said fifty fifty. More like ninety ten. We ended up carrying the little lady and the BOB. Oh well, it was worth it. It was gorgeous.
Lilly Lake
Kimball, Jax, Jonah, Lily and Poppy

A little bit further from Lilly lake were these gorgeous falls. Thanks Robyn for staying with the Lady so we could hike on.
Thank you to Uncle Joe who carried Lila all the way back down the mountain!
First boat ride!
Jonah, Quinn, Lila, Lily, Jax, Kimball, Eli, Jory, Poppy, Marissa, Me, Joe, Robyn, Todd and Kathy

Listening to the symphony at the Sun Valley resort, by far a highlight.
Lily was making Lila dance to the music and it was very entertaining. Those little thighs were so cute jiggling.
This past week we have been in Sun Valley with Quinn's Family. We had never been up in that area. It was gorgeous. We had a wonderful time. We sat on the deck, chatted, shopped, hiked, went to the arts fair, listened to the symphony, played games, took walks, enjoyed the mountain, ate and just relaxed.
Thank you to Todd and Robyn!!! We loved it and had the best time. It was very much needed. Thank you!

Party!! (number two)

2011-07-31T19:37:00.000-07:00

We had another BBQ the next night for our friends to celebrate with us. We had a wonderful time. We are so grateful for sweet friends who have prayed for us and who have supported us. I wanted a big party since we don't know how many we will get to celebrate with this little one so thanks to all who came and made it special!
I am so sorry that I didn't get a picture of everyone who was there! I started chatting and forgot to take pictures but we felt so loved that you all came! thanks!

Party!! (number one)

2011-07-31T14:39:00.000-07:00

What an adorable cake! (I can say that because I didn't make it) It's so Lila....

Lila is Lucky to have family that adores her. Her Grandpa just loves her and Lila responds accordingly. She chats with him and gives him smiles, they are such good friends.
I felt really good that people kept asking me if I made her cute banners, I guess you have a lot of faith in my craftiness. (I didn't make them)
Lila wasn't to interested in opening presents
We gave Lila some frosting from her cake. She wasn't too impressed. I was shocked considering how much her mama loves sugar.

I thought this pic was so funny. Look at Mikey's face, I don't think he was too happy with my camera happy moment.

Kelli gave me this adorable shirt while we were still in the hospital when Lila was born. I can't believe she can wear it now! Thanks Kel!
Can you tell I LOVE sweets?!
A Very rare photo, these two looking at the camera.

We had a first birthday BBQ over at our house to celebrate my sweet angel. I thought that I really needed to make Lila's first birthday a huge party, instead of curling up into a ball and having a good cry, which is what I wanted to do. It worked! We had so much fun and really celebrated her life. I think I had a lot of people praying for me because I was really dreading her first birthday. I thought that we would have far more progress than we do, but I had a wonderful time with family the first night and friends the next. We got to revel in Lila's sweet spirit and the blessing that she is.
Thank you family for being so wonderful and supporting us! We sure do love you guys.

A love letter to Lila on her first birthday

2011-07-27T06:00:00.000-07:00

Dearest Lila
A.K.A Lila bear, little miss, love bug, stinker, stinky, stink ba dink (just because you think the word stinky is funny, you actually smell rather wonderful) my sweet, bubba, angel baby, lady Lila, love monster, teaser, princess, and so many more.....
Happy first Birthday!!! One whole year old. Wow! It has seemed like the longest and the shortest year of my life. Filled with some of the highest highs and lowest lows. What an adventure.
When I was in the hospital and the doctor broke my water and we knew that there was going to be a complication I just started to pray. I begged Heavenly Father just to give you to me for at least a year. Give me all four seasons, give me time to love you. I am so blessed that he did.
When you were taken from me to go to the NICU your daddy and I thought that that was so tragic and discouraging, little did we know that it would only be the beginning to a long and arduous road. With each new discovery on how you would be different our hearts broke just a little bit more. We want so much for you, we want you to be able to experience all that there is to experience in this life. Love, faith, joy, discovery and pain. Little did we know that you would be, and are, our biggest teacher.
I thought at one year we would have the answers to how your life would look health wise, but it seems we are still stuck in the dark with far more questions than any answers. It's hard for me. I am so sorry that I tend to dwell in the future instead of enjoying your perfect and sweet present. Your daddy is so good at not asking the "what ifs" and I am trying to learn from his sweet and hopeful example.
Never has there been a more perfect and sweet little angel. I have never known another living soul that is either content or happy. I remember when you were a few months old and I had yet to see a social smile. You were sleeping in my arms and you smiled in your sleep. I just broke down, I prayed that I would see that smile one day in response to me. Now you give me one practically everyday. A few lucky days (like today in response to your first bath in quite some time) I even get a laugh. During these moments I have never felt so much joy. It feels like my heart is not big enough to carry it all. It is a little glimpse of heaven and I treasure them.
Lila you are enchanting, you are special. You made me a mother so I have nothing else to compare you to but I know that you are one of a kind. You touch hearts. Never has a room filled with nurses and doctors so quickly wanting to drink you in, or grandparents, Aunts, Uncles and cousins so willing to hold and to love you.
I had an experience in high school where I came out and told my mom that I knew I would have a child with special needs. Over the years I have tried to convince myself that it wasn't true but you came and I know that you were meant for your daddy and for me. At times I forget it and throw myself a pity party but your daddy is quick to remind me. Yesterday as we were walking in the mall I told daddy how hard it was to see parents and their perfect, healthy children. Your dad quickly agreed, he said it was hard to see them too because he felt so bad for all of them because they didn't get to have you in their lives. We are truly lucky to have you.
I love you Lila. You are the most wonderful and most beautiful part of my life, you and daddy. I am grateful that you gave me the gift of being a mother. I am grateful for all the other lessons that you are teaching me, even though they hurt, and it is by far the most pain that I have ever felt. I know you are pushing me to be better, to be able to deserve my family. I don't know what is in the future, I don't know if you will ever walk, talk or even really be able to see me, but I do know that we love you so much. That whatever comes we will face it together. "I took you by the hand and we stood tall." Love you little miss. Happy Birthday!!!
love
your mama

family pictures

2011-07-23T18:01:00.000-07:00

I can't decide if I love this one more in black and white or in color? What do you think? The color one is a couple down (blogger never puts my stuff in order)

I ADORE this one. I love that you can see my Nikki inspired bracelet that says Courage.

Blogger is not letting me post more pics!!! I will try again tomorrow. (I've tried for hours and I can't post some of the pics, oh well, here is a good group of them)

Alexis Shaeffer, a dear dear friend took some family pictures for us while she was here in town. I have been desperate for her to take our pictures for some time. She is so amazingly talented!!! I love her work. They turned out beautifully despite the little ones lack of anything resembling a smile. She was so hot and had a horrible lingering cold so she looks a little out of it.
Thank you Lexi!! You were so wonderful. They are so great! I love them.
Please check out her work here

Matt and the Boys

2011-07-23T17:46:00.000-07:00

We look like we are in a serious conversation..
Farewell breakfast
Such a boy! the cream was followed by strawberries! Hilarious.
Little miss trying to join in on the fun
way to go mom!

Thanks Listons for the yummy food!
LOVE this guy! Wish he lived closer. We adore you Mattie!
We had to go to the drive in. Its a family tradition! Matt was watching the other movies..
I guess the anti-gravity chair didn't live up to it's name.

LOVE these boys! We sure wish Josh and Nick lived closer

Matt and the boys came to visit us and we were so thrilled! We sure love these guys. We wish they were closer. Lucky Oregon!

10 years!!!

2011-07-21T08:41:00.000-07:00

Sorry guys, these pictures sure are fuzzy..

Lyndsay, Liz (and Caroline), Lindsey, Brynn, Michelle, Alexis and me.

I got together this week with my old high school crew. It's our ten year reunion this summer and some of these ladies won't be able to make it but it just happened that all of us were in town together for a brief moment this week. I cannot remember the last time we were all together. It was so fun and a little surreal. I kept looking around thinking my gosh it's been ten years??!!
We had so much fun. In some ways it didn't even seem like any time had passed. Our conversations have changed a bit, instead of discussing cute boys we chatted about good husbands and lovely babies. A lot has changed in ten years, some of us has gone through some hard trails and experienced a lot of heartbreak but also a lot of joy. It was amazing to get together and share.
Thank you ladies for staying in touch! For being so wonderful. We were blessed to have such a great crew in high school and I am so glad that we still support each other today. I know we don't chat with each other a lot and see each other even less but when it comes down to it I know we are always there for each other. When Lila was first diagnosed with cataracts and we knew a normal life was no longer on the table I got a huge gift basket and cards of support from these ladies, it really meant a lot and I am so proud that they are my friends!

St George

2011-07-17T13:05:00.000-07:00

I thought this was pretty Hilarious. Evie made me this picture of our family. I especially like Quinn in it.
Lila is starting to Laugh. She has no rhyme or reason to what she thinks is funny though. What made her laugh yesterday wont make her laugh today, so her laughs are hard to catch on camera. Kelli caught this one for me though. I love that big smile!
Evie found some stickers.....

Lucky Lila, she is greatly loved
We took a short trip down to St. George this week. We left on Monday after her Button was put in. We had a lot of fun, but Lila was not feeling good. She has a horrible cold and kept throwing up. We were going to come home on Friday but on Thursday morning Lila was struggling for air and I started to get anxious. Kelli (my personal pediatric nurse) thought she would be alright but said lets just take off to make me feel better. By the time we cleaned up and got in the car Lila was smiley and laughing! What a teaser! When we got home Quinn met us at the car and Lila started to smile and laugh for like a minute straight. It was so cute to see. She loves her daddy.
Thanks ladies for working around our schedule again! So sorry that we came home early ! I feel awful.

new accessory

2011-07-17T12:51:00.000-07:00

Lila has a new accessory. She got her button on Monday. I was so excited to get it, I just didn't realize how traumatic it would be. They put numbing cream around her hole and while we sat and waited she had her longest and most intense seizure (thankfully they still are only lasting a few seconds.) Still shook up from her seizure the doc came in and said it's going to be pretty traumatic. They use to put kids out for this but just can't justify the expense anymore. Then he just pulled her old tube out (I think since I was shutting my eyes rather tight) Lila cried so hard. For a mom of a baby that never cries this was heart wrenching! I sat and watched as blood oozed out of a hole in my baby's tummy, it honestly looked like a gunshot wound. Then they slid the button into the hole. It was horrible. Hopefully this will help her be more comfy though!

aarrrrrgggg matey!

2011-07-17T12:44:00.000-07:00

We started to patch Lila's right eye one hour a day. She is not a fan. The first time we did it she promptly fell asleep, when she woke up she had a very confused look on her face and then slowly wiggled her pointer finger under it and tore it right off. I was so proud I didn't even put it back on.

some more 4th pics

2011-07-17T12:23:00.000-07:00

These two just love Lila. I think of them more as older siblings than as cousins. They take such good care of her.

The parade is so fun

watching fireworks with my dad

I realized I didn't put some of my own 4th of July Pictures on the blog. So here they are a bit late. Thanks Mom for watching Lila while we went on a hike and fireworks, the poor sickie wouldn't have had much fun.

sweets factory

2011-07-17T12:20:00.000-07:00

I took the kids I nanny and Lila to the sweets candy factory with my nieces and nephew and my sisters friend Jen and her kids. We had a fun time. I had to post this pic because I thought a posing Molly was hilarious along with miss Grace holding Lila

Mayo

2011-07-11T07:25:00.000-07:00

The Mayo clinic called and they want to see us. In person. This was a really hard decision for Quinn and I but we have decided to fly out to Minnesota to go see the Doctors out there. (We were so sad that Arizona doesn't have a pediatric neurology department, we could have pretended we were going on a vacation.) I think we were both a little sad that we have to actually go out there we were so hoping that we could work in coordination with Primarys and do the tests they want to do here and they could make their decision remotely.
I think we are not very hopeful that we will get a diagnosis, even through the Mayo clinic. Which would be wonderful in some ways and hard in others. I go back and forth. I want to know to have a better idea of what her life will be like, how long she will be with us but I would also feel relieved if they don't find anything wrong with my baby.
So if anyone has any good tips about doing the out of state referral, or anyone knows anything about Rochester and the Mayo Clinic please let me know. We go in September.

particularly cute

2011-07-07T17:02:00.000-07:00

Quinn caught this little smile on his phone today. I thought it was adorable. Love those teeth.
It's especially nice to see since we went to the doc and Lila has another ear infection and kidney infection. poor lady.

Happy Fourth of July

2011-07-05T14:24:00.000-07:00

We watched the Park City parade from my parents time share condo on main street. It is one of my favorite traditions!
Quinn's cereal bowl
Gorgeous little miss....

Poor lady was not feeling good. She had a fever and a cold, so no real smiles and not a ton of movement. It always makes me a little sad, and a bit depressed. Love that little miss!

Glitter toes!

Happy Fourth! I love the fourth of July! It is one of my favorite holidays! So much fun!!!

eleven months

2011-06-27T20:22:00.000-07:00

My baby is Eleven months today. I can't believe it.
Lila is doing better with head control. Still can't hold her head up but she is able to push back and bob around before dropping it, but I must admit she is trying harder these days. She use to be pretty passive and now she is actually trying.
She is kind of off and on with her vision. Some days are better than others. But our vision therapist is really excited by what she sees every time she comes, so I have to take comfort in that since she sees kids who have vision impairments everyday.
Lila has been so happy lately. So willing to smile and even to laugh. We have gotten a few big bursts of laughter. She is smiling at stimuli and not just randomly so it's so enjoyable to interact with her. She loves to use her voice. My favorite is when she lets out a large yell that even scares her a little bit and she jumps at her own voice and then laughs.
Unfortunately she is still having seizures. They are horrible to watch and just break my heart but I really don't want her to be on any meds because I feel like she is much more interactive without them. So I hope that they stay relatively small and we can stay off medication.
We have certainly been blessed to have our little lady in our home. She radiates pure love and joy.

Little personality

2011-06-24T20:44:00.000-07:00

She smiles so easily now..
Lila is slowing showing us her personality. It has taken a little bit longer than most kids but we do get to see it from time to time. Lately she has been giving me kisses. Which of course I ADORE! She flips her head up and sucks on my cheek. When I tell her thank you for the kisses she gives me a little smile.
She also has a little mischievous side. The other day after I put her to bed I was hearing her gasp. I rushed into check on her put was just met with a huge grin. I gave her kisses and left only to hear the gasp again. I stayed in longer to watch her but she didn't do it again. I left and a moment later gasping. I called the on call doc scared to death that a hospital stay was looming. He, not knowing Lila, was super concerned but said it was up to me. I waited till she fell asleep and there were no more gasps. As I was telling my mom and sister about it the next day they just started to laugh. They said have you ever thought she was doing it for attention? I hadn't. I guess I didn't giver her enough credit.
Last night Quinn and I were walking past her room when I slowly closed her door. Immediately a huge gasp came from the crib we ran inside and was met with a huge grin. It lasted quite a while as I explained it was bed time. So hilarious.
She also has the sweetest little soul. While we were in the hospital I would notice that when I held her hand she would rub her thumb against my fingers. Seemingly to comfort me much more than I was comforting her. At fist I thought that is was a fluke but she has been giving me these types of loves for a while. We have noticed that she will put her hand on ours and give it a squeeze or a rub. What a sweetie.

the mountains

2011-06-24T20:17:00.000-07:00

The river sounded a bit to much like her noise maker at home, she actually took a nap!

So pretty!
We took a little walk up the canyon the other day. It's so beautiful.

funny

2011-06-24T20:12:00.000-07:00

I came home today to this painted on the wall. I guess Quinn has decided to paint this wall tan, and took advantage of my LOVE sign.

muscle biopsy

2011-06-21T15:34:00.000-07:00

The scar is much bigger than we thought it would be.

Lila's Doctor called from Primary Children's today to let us know that her muscle biopsy came back. Lila had 9 different mutations in her muscle DNA but according to the scientists they are not significant mutations, meaning they wouldn't cause Lila to be the way that she is. I'm sure we would all be surprised to know how many mutations we all had. They want to get a blood sample from me to see if I have the same mutations then we would know with 100% certainty that her mutations aren't causing whatever is going on with her. This test concludes all that we can learn from the muscle biopsy. Which everything else, the staining and such, it all came back normal.
It's pretty bitter sweet for me. While I am thrilled they didn't find anything, I am heartbroken not to have any answers. No help with trying to predict how her future will go. The muscle biopsy is the last in a long line of tests. Primary children's is officially stumped. We now will only see our Doctor for checkups and in case new problems present themselves. Our doctor has gotten in touch with a specialist in San Fransisco who deals with children with ACC to see if he would like to see us, or we will try and send off her results to the Mayo clinic.
I'm pretty defeated. Part of me wants to fly all over the country to see what all the specialists know and part of me just wants to take Lila and never walk into a doctors office again.
I believe that Lila had a seizure today. Her second if I am being honest with myself. I hope and pray that more adverse symptoms are not looming around the corner but part of me is bracing myself for more horrible news to come. I don't know how it can get much worse but from watching a dear friend I am reminded that it always can. I have to wonder how much longer can this go on? Stuck in this frozen moment of no progression and yet not really getting worse. Not having any answers. It's a pretty painful place to be.

Happy Father's Day

2011-06-19T19:57:00.000-07:00

Happy Fathers day to the best man I know! To say that Quinn is an amazing father is quite the understatement. Anyone that knows us knows this to be true. Quinn is incredible. He loves this little girl with more passion than I thought possible. He is the glue that holds this family together. His positive attitude is what keeps me going and his knowledge and faith in a bigger plan gives me perspective. To watch Quinn love and hold his little girl is the most beautiful image that I have ever seen. Quinn has so much faith in his girl. He is always encouraging and willing to do whatever he can to make Lila reach her potential. He is the definition of a hands on dad. I am so so lucky! I am lucky that he does everything in his power to lighten my load and to always spend as much time as he can with his daughter. I feel so blessed that he is my husband and Lila's dad! We love you so much Quinn. Thank you so much for dragging me through this life, even if it is kicking, screaming and sobbing all the way. You will always be the best thing that ever happened to me.

Second opinion

2011-06-16T14:37:00.000-07:00

Several months ago I started to have the feeling that I should seek a second opinion about Lila's eyes. I kept pushing it out of my head thinking what else could they tell me? She had/has cataracts and needs contacts what could be so different? It took a conversation with my old (beloved) vision therapist to make the call.
I called the apparently "guy to see" in Utah and made an appointment. It took several months to get into him, we saw him the beginning of May. He looked at Lila and immediately asked if she had officially been diagnosed with Aicardi syndrome. My heart sank. I found this syndrome when I was googeling and it's not a good one. I said she hadn't, he seemed skeptical. He looked at the past doctors notes and finally told me that he didn't agree with his colleague and thought Lila was wearing the wrong prescription in her contacts. For the past ten months!!!! He said he wanted to put her under anesthesia and do an exam himself, he wanted to measure her eyes, check the powers of her prescription, do an VEP (visually evoked potential) do some photography of her retinas, optic nerves, etc. I was nervous yet thrilled that we were revisiting the problem. (Our last Doctor had said he had done all he could and just check in from time to time)
We started to set up the appointment, they said the soonest was two months away. That was pretty sickening to me. I was a bit panicked to get it done since she had already had the wrong prescription for so long. I called relentlessly. I feel very bad for the people at the Moran Eye center. In the end we scheduled it for today. Just six weeks from the time I was told she had the wrong prescription.
I was just sick all week. This was the same procedure that was the beginning of all of Lila's health issues. The last Doc had done these same tests and concluded that he wouldn't do surgery because frankly the brain was not functioning enough to do so. Only the MRI, which showed her brain was intact changed his mind. Suffice to say I was very scared that today would be another tearful and tragic experience.
Here is what we learned. Lila does have small and pale optic nerves but her VEP, or all the info going from the eyes to the brain is in the NORMAL range! Low on the scale, but on the normal scale none the less! She does NOT have retinal lucunea, the tell-tale sign of Aicardi syndrome. She is near sighted but as of right now she is not going to wear her right contact lens. We have an appointment with another doctor to fit her with new contacts based on what the measurements found today. Dr. "H" says that he has every reason to hope for her future vision wise. We will see him regularly and start patching her eyes in the hopes of strengthening them.
It was kinda funny when the Doc was telling us the good news Quinn let him know that he and his dad owned an optical clinic (so they could talk in medical terms and Quinn would understand) , the doc looked at our name tags and said "oh you are those Kimball's! Kinda a big name around these parts for optometry." I'm starting to think Lila didn't come to us by accident. How blessed we feel that she has all the support and all the opportunities to reach her full potential.
Tears today, but definitely tears of joy. We feel so blessed to have this good news.

please pray for Callahan

2011-06-14T16:15:00.000-07:00

During this experience with Lila I have always said that a blessing that we have received is to meet amazing people. Two of those people is Nikki and Callahan. They are such a great couple. Their daughter Eliza has a rare neurological disease called MLD that is degenerative. They have really shown me what it means to take a trial and turn it into something positive. Nikki stared Eliza's library and Callahan started team give, a charity to help those with neurological disorders. Nikki has been so supportive and kind to me and has really helped me deal with Lila's situation. She reached out to me when she learned about Lila and it has made such a difference in my life.
They had us over for dinner one night and the image of Callahan and Quinn sitting on the couch still makes me teary. Callahan was holding Eliza and Quinn was holding Lila and they were talking about how much their girls had their hearts and how special they were. There is just something about a dad holding his little girl, especially these sweet angel kiddos, that tugs at the heart strings.
Callahan was in a cycling accident this weekend and suffered a spinal cord injury. At this point he can only lift his arms slightly and move one leg a little bit. His hands, fingers, feet, toes and leg can't move. I am putting this on here (I hope Nikki doesn't mind) because I really believe in the power of prayer and have been touched by all those, even those I don't know, who have prayed for my Lila.
You can learn more about Eliza and how Callahan is doing here

28

2011-06-14T11:47:00.000-07:00

in case you can't read it, it says: I may not have millions or very much hair but Kristi my darling to have and to hold you leaves me with no cares. (notice in the last picture I am looking at Lila saying "oh Lila" and Quinn is saying "no cares here")

Robyn made me this beautiful pillow. She is so talented

Do you think it says something about me that my family always picks out princess themed cakes for me even though I am 28 years old? hmmm.....Thanks mom for getting me my favorite! You always make birthdays special.

I had a great 28 th birthday yesterday. Quinn decorated the house with balloons and a comic strip (blogger is not putting pics in order for me lately) that was adorable! He brought me flowers, gifts and took me out for sushi, Yum!
My family celebrated two weeks ago with my favorite dinner. (sorry dad, turkey again!) Thanks so much mom, thanks also for spending the day with me yesterday! The Kimballs had dinner for me and Jonah on Sunday, once again a favorite. Thanks so much everyone!
I think this was the first birthday that I actually felt kinda old. 28. Crazy. I thought I would be so much more "grown up" by now : )

its a love hate thing

2011-06-14T10:59:00.000-07:00

Lila's therapist gave her this new toy. It's super sensitive to touch and it's incredibly loud and slightly annoying, but Lila can do it and she likes it. She concentrates very hard and pushes her hand down against the ball and it whirls the confetti around and plays music. i can't tell you how cool it is to hear it from another room, if I'm running to put stuff away I can hear her playing. We haven't had that experience before. It's pretty wonderful.

Lazy Sunday Afternoons

2011-06-14T10:48:00.000-07:00

Love lazy Sunday afternoons out on our deck. Heaven

boy scouts

2011-06-09T19:34:00.000-07:00

Our new vision therapist gave us this board that was made by the boy scouts. Every time I look at it I smile. I think of cute little kiddos like my nephews Ben, Josh, Nick, Jonah, Kimball and Eli putting it together for the visually impaired and it just warms my heart.

Vision Therapy

2011-06-09T18:42:00.000-07:00

Our vision therapist Sherilyn was let go last month, for as far as I have been able to figure out, going above and beyond her job description. I am so angry at the Utah school for the deaf and the blind! They let go the best therapist with no explanation. Helping these kiddo's is her passion. I can't even tell you how sad we are. She was AMAZING!!! She did such a great job and we are trying to figure out how to keep her in our lives. She always had the cutest activities and was so positive and reassuring. I adored her. These are pictures that she gave me, she took pics every session and made them into a CD. We sure do miss her!

rolled to her side!

2011-06-02T14:52:00.000-07:00

While I was out running errands today Quinn called and said your daughter just rolled onto her side! I was so excited! Then this afternoon she showed me her new trick. Way to go Lila!

celebrating the small things

2011-05-28T11:47:00.000-07:00

Exploring her world..

Her favorite is the pink disco ball. She hits it back and forth. She does look at it from time to time.

We are so excited when she holds toys. Especially in both hands. She will shake the maracas and then laugh. It's adorable.
She is holding her head more and more midline. In this photo you can see that she is talking as well

This sign is hanging in Lila's room. It reminds me to celebrate everyday.

We are constantly trying to celebrate all the small things. Lila is doing well. She is making progress, they are small and slow, but she is making good progress. She has shown more visual responses, She holds toys, she is holding her head more and more midline, She still smiles, laughs and sucks her thumb (she sucks her right thumb and her left pointer finger) She kicks her legs, -they are not as stiff as they once were.- She will touch items on her board that I have just touched and showed her. She is getting more vocal, she loved the sound of her voice, she will get louder and louder as she "talks."
She will do little things that surprise us all the time. Like the other day, she was sitting on her grandpa's lap with her head against her chest and she was trying so hard to lift her head and find her grandpa, she was trying so hard to look up.
Also the other day she was in her crib awake (as always) and Quinn walked in and said Hi Lila, She turned her head looked right at him and gave him a huge smile. She does these random things that continue to surprise us.

Things I could NEVER do...

2011-05-28T11:16:00.000-07:00

Those gorgeous eyelashes are little minefields for trying to get past...

I vividly remember crying to Quinn that he could never go out of town again because there was no way I could ever put in Lila's contacts. Now I'm better than him at it ; ) - a little joke between us-

I must admit I cried and squirmed the first time I had to clean around her tube and change the dressings.

It is crazy to look back and think of all the things I thought I could never do or that would ever happen. Put in contacts for one, do medical things such as cleaning around G tubes for another. (I find it rather ironic that my whole family is medical and use to these types of things and yet I was given this challenge. They could deal with it a lot better than I)
I don't say this to pat myself on the back I am just excited for all the things that I think will never happen that will. I remember thinking that Lila would never smile or laugh, and she does. How wonderful is that? I get down and think she will never do this or that, or she will miss out on this (I feel a little ashamed admitting that) but this little cupcake is going to prove my doubts wrong, I can just feel it.

little stinkbug

2011-05-28T11:00:00.000-07:00

Lila doesn't sleep anymore. Something that is pretty normal for kids who have abnormal EEG's (yea we are following some normal pattern of behavior!) Literally she sleeps like eight hours at night (gratefully) and then no naps during the day. If she does happen to fall asleep you can't mover her. Its precious. The picture above is right after trying to get her to fall asleep in her crib for about 45 minutes. I put her down to play and what do you know? passed out.

great people

2011-05-28T10:39:00.000-07:00

I have to say that a blessing from this experience with Lila is that we have been able to meet the most wonderful and inspiring people. This week was no different. We met Lyndsay's cousin Erin who was diagnosed with Cerebral Palsy. The doctors told her parents she would never walk, talk or have relationships. Erin can do all those things and more. What an inspiration! It was nice to meet with her parents because they kept commenting on how great Lila was moving. That sentiment is quite new to us. Usually these days we only get comments on how tired she must be (when she is wide awake) and how calm she is. The Parents gave us hope that Lila's future would be filled with miracles. They kept pointing out to me how great her movements were. It was so nice to hear, especially as we are nearing her year birthday and we still can't lift her head. Something that weighs on my heart pretty heavily. It was so refreshing to have someone lift you up like that. The father seemed to be pretty confident that Lila would walk someday. That was great coming from someone who has been there.

Thanks to Jolynn who gave us that beautiful pot of plants, she knows how I envy her green thumb! Thanks to Lyn for insisting that I meet Erin and for setting it up. I know I was so reluctant but I appreciate you trying to get me to see some hope for the future. (and thanks for getting the back of your car filled with potting soil. sorry)

ten months

2011-05-28T10:36:00.000-07:00

Bath time

2011-05-28T10:32:00.000-07:00

poor Lila she use to Love her baths. Due to the G tube this is our bath time these days.

technologically challenged

2011-05-27T10:04:00.001-07:00

Ok to those of you who have a different way of posting comments on your blog, the kind where you have to pick a profile (example blogs are: barb, Ang and Nikki) I cannot figure out how to post on your blogs! So sorry
Ang- you have commented before about wanting to know about a muscle biopsy. I tried to comment back but to no avail. please email me at kristiet13@yahoo.com so we can chat about our primary adventures. (Olivia is gorgeous. I am so sorry you are going through similar things)
Sorry to the others that I don't comment on (barb and Nikki) But I do look all the time. (Nikki you need to update some more pics of your cuties!)
thanks

When she smiles....

2011-05-22T20:12:00.000-07:00

It's hard to catch Lila's smiles, so the other day when she was having a particularly smiley day I grabbed my camera and just started to snap away. I caught some good ones. Those smiles just melt me.

favorite outfits

2011-05-22T20:02:00.000-07:00

Look how cute these little outfits are. (just putting them on here to remember them) I love summer clothes. We bought the Hawaiian life onesie when we were there and I was preggers with the little lady. It was crazy that she can fit into it. It's kinda sad to remember all of our expectations for her when she was in my belly. She is such a babe though.

pink baby toes.

neurology appointment

2011-05-20T09:00:00.000-07:00

We had a neurologist appointment yesterday. The first round of results from the muscle biopsy came back normal. She has some bigger fibers and smaller fibers than normal but that could just be due to lack of using the muscles, so he is saying that it is normal for Lila. We have to wait for the rest of the results to make a game plan going forward but we are tentatively thinking (if everything is normal) that we will send all her results to the mayo clinic for a fresh new look. We are also going to repeat her EEG next week to see if her medicine is helping at all or if we can take her off it.
Our doctor told us that he thinks that what is going on with Lila is definitely genetic. He believes that it is in the sporadic genetic category though and not necessary doomed to happen to future children.
He also told us that if Lila doesn't improve she will be diagnosed with Cerebral Palsy. That was quite the blow. He doesn't think that she has any progressive diseases, just that she will remain static. How awful. He said that there is some hope that she will improve but obviously as every month passes some of that hope is diminished.
The idea of my beautiful girl in a wheelchair not able to see or talk is quite simply more than I can bare.
As always we are praying for a miracle....

retreat

2011-05-15T18:53:00.000-07:00

Look at that tubeless face!!!! OH I LOVE IT!!
Summer legs. The docs say Lila has to wear onesies while she has her long tube sticking out so instead of boring onesies we stocked up on rompers. (I thought if auntie Anya can rock them and look so cute so can Lila. -obviously she has the adult version-)

(my hair is wet not greasy)

I Love that smile! I think this is my first tubeless smile pic. So adorable

I had to put pics of this romper on because it's so cute, I just bought it and it's too small and I lost the receipt. shoot.

This is my heaven. My two birds enjoying the sunshine.

We went to St George this weekend. I know, I feel very selfish going what with Lila just out of surgery and all, but we were planning to go down before the surgery was scheduled and really got our hopes up of getting out of town. So we gave Lila pain meds and headed south.
It was so great we just rested. We relaxed in the back yard and snuggled while we slept in, we took a walk by the river and ate at our favorite restaurants. It was blissful.

Ph probe, muscle biopsy, and G tube.

2011-05-15T18:17:00.000-07:00

Lila and I spent the night in the hospital last week to do a ph probe to see if she was having reflux. This was done so we could see what type of G tube she could have. Poor girl her little nostrils are being pulled in different directions. She didn't have any substantial reflux so a G tube was scheduled.

We had a G tube and muscle biopsy on Wednesday. There is something so wrong about seeing a tube stick out of your baby's belly. She has to have the tube stick out for eight weeks until we get a little button. That should make life better.
She also had a muscle biopsy. (Thanks to all the special needs moms who voiced their opinion that she should get it done some where else. We took your advice very seriously and we were very willing to fly to Baylor. Our neurologist -who has no ego- asked around and sent emails all over the country to see if this was necessary. The specialists all agreed that wouldn't be a problem to do it at Primary Childrens) It is so awful! Her muscle biopsy looks bloody and painful and of course there is a tube sticking out of my baby! It's been pretty hard to watch her go through this .
Quinn and I have decided that Lila must have passed some serious tests in the life before this because she is by far the most valiant little thing I have ever met. Once again she hasn't complained. You can tell she is in pain, she whimpers and squirms, yet she is patient and gives small smiles. I am in awe of her. She is teaching me so much about endurance, patience and having a good attitude.