Little Miss is eight months. The 27th is a little hard around this house. With each month that passes I get more discouraged. This month has been especially rough. Lila was put on a high dose of steroids and she has been having some adverse side affects. Poor thing is extremely puffy. Notice the large face in the photo. (Although maybe it was because they had her feeding pump set to high. She was gaining 65 grams a day. Normal weight gain for kids is between 9 or 10. She was so full.) She also has been whimpering in her sleep. Heartbreaking! She has been so lethargic. I am so excited for Thursday when we have her final EEG. No matter the outcome she will be taken off the steroids. I hope that is what is causing her to zone out.
Our neurologist wants to do a muscle biopsy as the next step. I am a little hesitant. I don't want to cut my baby. Especially if they are just going to come back and say all is normal, like everything else we do. I feel so bad for my little love bug. She handles it all with a patience that would put anyone to shame let alone an eighth month old.
Besides having our EEG on Thursday we are meeting with a group at Primarys called the Rainbow Kids. It's mission statement is to help families and kids who have life threatening illness. I'm a little sad that they have asked to take on our case. What does that mean?
Despite all of this Lila Patricia is as sweet as ever. Just a little cuddle monkey. I feel like she comforts me more than I comfort her.
Lila has been so lethargic that her therapists have told me just to hold her and love her and not make her work. (I bet you can guess how well that went over with me) But despite that we got a lot of fabric from grandma Kimball and our new favorite past time is listening to classical music while looking at the colors. Some days are better looking days than others.
Lila is getting so much more hair. It's really filling in and sometimes it looks like it has a bit of a reddish tone to it. If you go in the sunlight it is white, but around the house it looks very strawberry. Who would have thought I would have a little strawberry blond, blue eyed girl! She is gorgeous.
Love the baby legs.