I know it's been a while, and I'm sorry for that. Some new updates:
Raelin has lost 3lbs in the past month. Both her regular pediatric doctor and GI doctor cannot figure out why. She is still receiving her same amount of food and calories but for some reason she has lost weight. Not good. She is currently weighting 15 lbs and 12 oz. she was 18.5 lbs. so we went to see Dr. Blumenthal (GI) yesterday 7/20/15 and we have raised her calorie intake to 700 in 24 hours. Plus we are starting to introduce baby food to her. She seems interested in it so that's good! Hopefully this will let her pack on the weight again. We have to keep a food journal to let us know what all she is eating.
Positive note she has been doing really well with her seizures. We started her on a new medication and it seems to be doing well for her. Hopefully that will continue.
In August we plan on having an MRI and another surgery done. The MRI will be for us to see if the brain is communicating well to both sides of the brain. The surgery that will be done is for her button. She currently have a GTube and this is another form. Dr. Blumenthal said it is a 5 min procedure and with be very simple. The thing that worries us is both times she will be under anesthesia so hopefully we can do it the same day.
She also has an eye appointment in August. Hopefully we can either get her some glasses or get pointed in the correct direction for her lazy eye. We believe this is why she favors her right side more so than the left.
We got her Kid Kart earlier in July and Rae is LOVING IT! She is able to sit up like a big girl and practice holding her head up. She is becoming so much stronger and wiggling around all the time. We are so pleased with the kart.
Will update when we know more. Thank you for all the prayers and support!