celebrating the small things

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...

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

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

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

Bath time

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

technologically challenged

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....

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.