Another trip to Children's

Well, last week was our first meeting with the craniofacial team at Children's Hospital Los Angeles (CHLA). I have a feeling that we are going to be spending some time there during the next few years. Adam, Ayla, and I went there last Thursday, January 17, 2007 to meet with all of the doctors associated with the team -- pediatrician, geneticist, pediatric dentist and orthodontist, hearing and speech. I can't say that we got any answers that day, but we were given more referrals. So, we will see what comes out of this. We also were able to meet mom for lunch and see her office. She loved showing Ayla off to her coworkers :).

Yesterday, Ayla and I went back to CHLA for a CT scan of her head. The team wants to see if there are any abnormalities in her jaw joints. I am anxious to find out. I guess that I have a wish that sometime soon she will be able to open her mouth. I hope that it isn't just wishful thinking that that maybe it will come true.

Ayla's milestones

Well, this week has been busy with more therapy appointments and doctor's visits as well as teaching Ayla's daytime nurse, Sue, how to take care of her. This week has also been a big week for Ayla in that she rolled from her back to her tummy (!) and she made a big smile when I kissed her neck! She is also swatting at toys and cooing. She rollled over on Sunday January 6 and smiled on January 8. Noah loves to see her smile! He cracks up every time she smiles. Ayla is doing great in OT and PT. In PT she is working on loosening up her legs and spending time on her tummy. In OT she is working on eating from a bottle and swatting at toys. We are very proud of her :).

A trip to Children's Hospital of Los Angeles

Yesterday I got an unexpected phone call from the intake worker for the Plastic Surgery/Craniofacial team at Children's Hospital of Los Angeles (CHLA) saying that they wanted to see us for an appointment! I thought it would be a while until we could get in. Since Ayla is still having trouble opening her mouth and feeding, I have been anxious to get to Children's to meet the craniofacial team.

Today's visit was mainly for initial assessment/intake of history. It did feel good to go forward with getting answers about her, if there are any. However, it did feel like I was getting back on the emotional roller coaster of, "she could have this, or she could have that, etc". I am so much better equipped, emotionally, to deal with what reality is. I was so much more "fragile" while we were in the NICU at UNM.

The next step is a team meeting at CHLA on Jan 17. She also has a CT scheduled on Jan 23 to assess the structure of her TMJs and mandible. Then, we go from there!

I did think that it was ironic that when I got off the elevator today to go to the Plastic Surgery dept, the dental clinic was to my left!

Ayla is 4 months old

Today Ayla turned 4 months old! I can't believe how time has flown and also how much we have been through. Seems like just yesterday I was living on the Res minding my own business and next thing I was being flown to Albuquerque to have a baby...EARLY! It seems so surreal. Everything from her actual birth to the 37 days in the NICU to spending two weeks in Tarzana-Encino Regional Medical center...WOW! I can honestly say, however, that through all of our difficulties and challenges with Ayla, I have met the nicest, most caring people. The nurses, OTs, PTs, etc, etc have been wonderful and I am thankful for them. I am also very thankful to be the mom of such a trooper!

Today I took Ayla for her first photo shoot. I realized that with all of the excitement going on, we had not taken Ayla for professional pictures. I had a lot of fun taking her today and I even got to be in some of the pictures with my little monkey!

So, this is my first blog entry, but I hope to write more.