As I mentioned the boys various appointment and Addie's have all gone well. I can't explain the feeling when you are told your 4 1/2 year olds who have been doing wonderfully may have something wrong neurologically. It's a bad one. The good part of the memory of that night was that I treated the boys to Panera and a pumpkin cookie. We had the best time. I worked through the overwhelmed feelings in my usual way with some heavy carbs. :)
Seriously, though we have jumped through SO MANY hoops since then. I have made countless phone calls and appointments due to this single appointment. It turned our home upside down for weeks on end. We met with the OT finally and she indicated that there were NO red flags. She didn't even think insurance would cover any further appointments. There only issue is muscle weakness which 1) is typical for preemies and 2) can be remedied with some fun games like wheel barrow and crawling around in forts and stuff to build upper arm strength which in turn helps their muscles that help them write. Crazy, right?? Anyways that and some fine motor work through play.
PT FREEKED out when they saw how Alex sits with his legs bent behind him. We are working on that. Addie does the same exact thing and we have to tell her "fix your leg" and she pops it out in front of her. It is really cute. Ok back to the boys. So OT sees no need for concern. The square drawing that concerned the neurologist is not a skill they need to have until 5. The original reason for the MRI's were 1) ankle tightness (can be helped through PT) 2) delay in the square writing thing (not a delay b/c they aren't over 5 years old) 3) brain bleeds (which was misinformation because Alex didn't have one and although Eli did it was a grade 1).
I wasn't super comfortable with the sedated MRI and now that some of this doctors concerns may have been a bit premature I decided I wanted a 2nd opinion. I got in this past Monday and our neurosurgeon who has seen Eli since he was born and sees Addie felt they were doing quite well and would not refer for a MRI. Yay. This doctor is one of the best in the state and I felt he had a better handle on their history. He indicated that their tightness was pretty typical given their history. We will continue to watch the boys but at this point we will just be doing some OT and PT at home based upon the homework we were given from these specialists. I am not quite sure why we were referred to neurology and wish we could have started with the neurosurgeon but live and learn.
As far as Addie is concerned she is still receiving Early On due to her gross motor delay although as I have mentioned she has since been standing and cruising furniture. The PT who came out this week indicated that she is within normal range when you correct her age and that she did not qualify for her program. She did want us to keep working with her on "fixing her leg" but said she was a physical therapists dream. She also said that for fine motor she does some things that put her at a 3 year old level. So funny. Couldn't my preemies have had the same deficits instead of complete opposites. :)
This post is kind of all over the place and I don't feel like I'm explaining it all as well as I could but this is as good as it is going to get. All of these exercises and activities are definitely keeping us busy but Jared and I don't forget that we are so blessed to have these 3.