When she smiles....

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

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

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

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.

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.

First Mothers Day

My mom is amazing. She spent so much time and energy to ensure her kids success. Because of her example, my expectations were high when I knew I would marry kristi. I have to say she is everything I could ever hope for in a mom. I wish you all could spend a day in our lives to see that I am not exaggerating. In great times she is fun and hilarious. Her infectious smile is intoxicating and her laugh breaks down thick barriers
Lately, we have been forced into a situation where the tough times are more frequent and intense and I have seen that Kristi's greatest gifts shine bright. Her love for Lila, her persistence in fulfilling Lila's needs before her own, and her commitment to this family are inspiring. My only wish for you today kristi, is that you recognize how amazing you are, how loved you are, and how lucky we are to have you. Here is to the first of many celebrated mothers days for the most wonderful woman I know. Love, Quinn

inspiring moms

I saw this commercial today and just started to sob. It really touched me. It gave me some hope. Something that I must admit I have lost in the last few weeks. I thought I would share.
I want to thank all the moms in my life. The mothers that have supported me and lifted me up. The friends who have called and have left messages, and who hurt right along with me.
I am in awe of the mothers of special needs kids. You are inspiring! You have learned unconditional love, patience, long suffering, joy in the small moments, strength, charity and courage. Lessons that I am trying to understand, and wishing I could learn some other way : ) Thank you for reaching out to my family. It is so nice to talk to someone who actually understands. We are in a group no one wants to belong to, and yet I feel that I am in the company of giants.
To Lila's second mom, Kelli. Thank you for always helping us, for supporting me and for making this some what bearable. I would be lost without you. Thanks for showing me how to be a great mom for the last 10 years!
And finally to my mom. Thank you for still believing in me and for always, with unwavering faith, believing in Lila. You are inspiring. I know this hasn't been easy for you. It's hard to watch your kids hurt, but you are amazing. Thank you for being such a great mom! I am blessed. I rely on your faith. You and Lila are kindred spirits. I feel so blessed to know both of you.
As my first mothers day approaches I am a little saddened that it is not what I pictured, but I wouldn't give it up. Lila, I love being your mom. You bring me so much joy. You are my biggest teacher and my greatest achievement. I am awed by your strength and patience and great attitude. I feel honored you chose me, that you let me take this path with you. I don't know what the future holds (my biggest frustration!!) but as your daddy always says, it doesn't matter, I have you and I have daddy. Thank you for giving me the greatest gift, Thank you for making me a mother.