Cutest baby in the WORLD!!

Calendars

Trying to keep Lily's schedule straight again with all her therapy is kind of making me crazy. Speech, PT, OT, DTH, DTV, dr.'s appointments...It's not like I haven't dealt with it before when she first came home from the hospital. It is just taking a bit of getting used to again I guess. I am so lucky to be able to spend this time with her. I hope I can end up spending this time with her for a while. We have a great team for her and her next IFSP is coming up on August 28th. We can order a walker for her then and start down that road.

I have to set up an appointment with Dr. Young ENT who specializes in cochlear implant surgery and see if Lily would be eligible. Her cochlea are malformed so they don't always do that. There is a group that meets monthly at Comer's (University of Chicago) and they will be reconvening after the summer in Spetember. I would like to see what our other options re: doctors are for this issue. At least there are some options since we are so close to Chicago!!

This whole journey is complicated. You have one map and then the signs don't match and so you get a map for that area and then another...it's a long road of tangents. I think the first stop was lining up Lily's doctors, then her therapy. I think that having those figured out are part of this journey. Dr. Dana Suskind at Comer's may be another. We shall see!!

Who's On...

First blog! Woo hoo! I was finally inspired to do this by Hannah from California (Viv's mom). It is what it is. But I think this could seriously be an outlet I could use right now.

Last week on 7/16 I became one of the officially unemployed. Yes, it my 3rd layoff after my 4th merger. We'll see how this goes. The best part of it is that I get to be with Lily again for all of her therapy and doctor's appointments, etc. She is a morning baby and I am not a morning mommy at all. I'm sure God decided on that!

Today we took Lily to Cosley Zoo in Wheaton. She saw some sheep a horse a goat and then the backs of her eyelids. I am still getting used to her sleep schedule. Right now it is defined as one nap in the morning and one in the afternoon. When specifically is up to her... I can thank Children's Memorial in Chicago and the great nurses there for her self-soothing tendencies. She could play in her crib all day without one peep. She is quite a scoocher (not sure if that is a word) and lays on her back and pushes with her feet to get around.

As I mentioned, Lily has Charge Syndrome. She was part of a genetic study when she arrived at Children's. She has 4 heart surgeries, 1 choanal atresia surgery, 5 nasal endoscopies, 2 cardiac caths, gt tube surgery and a partridge in a pear tree...She has a retinal coloboma in her left eye; heart issues (Double Outlet Right Ventricle with aortic stenosis and Ventricular Septal Defect with coarctation -- whew!!); ear issues (severe hearling loss in the left ear and mild to moderate in the right) and is gtube fed.

Ok. More than you wanted to know. I never in a MILLION years thought I would know this much medical terminology in my life. And yes now I can sound like a nurse. Halloween is only a few months away. Lily could be the doctor! Back to topic...If you are one of my friends you know I could go on and on. And I think I will do it another day because I have held myself back from running into the other room to go play with my daughter!