So day before yesterday we took Ellina to see a neurologist. I had asked for a referral about a month ago for more then one reason, Ellinas leg and foot that is way smaller then the other one was one reason and the fact that she is 5 1/2 months and still not rolling over, or showing much progress. When I brought her in I was allot less worried, she still doesn't roll but is getting the fine motor skills down well, she grabs at stuff shakes her toys, jabbers and at least tries to do the things that she is supposed to be doing.
The neurologist visit was very informative. I hope this doesn't sound offensive to anyone but I thought it was really neat that the doctor was deaf, she asked us to look at her while talking because she lip read. To me that is just amazing that even without being able to hear she could be a brilliant doctor.. Good for her! But anyway, she said that we not only have to adjust Ellinas age to her due date making her 5 month now, but we also need to realize that every hospital stay is a setback, being in the NICU 3 months, and then back for a week with pneumonia, and then back for 2 surgeries, (heart and eye). So putting those set backs in consideration she is actually not behind but doing amazing, she has great head strength and is just working away on the other stuff, although we agree that physical therapy is still a great option for her since it never hurts to help them learn stuff we do think she is ok. Also she does want to do an MRI to check for brain injuries from TTTS and being early, but wait till she is a year so that she can handle anesthesia a little better, I plan on playing that by ear.
Big relief there, my Ellina is just doing amazing, she coos and laughs and is just so beautiful.
Cody and I are doing ok, we still have quite a few bad days, I am friends with alot of other TTTS moms and sometimes its gets really hard, I don't know what I would do without them but I am exposed to more and more loss, it just kills me how many babies are taken by this terrible decease. So for my friend and family when you think of me please say a prayer for all the families that have lost and those who are still fighting for their babies.