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