Update

Hey everyone. Thanks for all your feedback regarding my last post.
I wanted to respond to a couple of things and tell you some of the progress I've made over the past 2 days.
As for orthopedics, she wants to see him again in 6 months at their CP clinic appointment. I called and got that appointment moved up to the end of next month so I can address some things I didn't feel I had a chance to last visit...she kind of rushed us out.
What I want to make clear is my concern over Edwin isn't that 'he isn't walking,' as much as I do not see him having the *ability* anytime soon because of his extreme low tone in his trunk. Not to compare of course, but I did not worry about Serena not walking, even though she really only started a month ago. The reason I didn't concern myself with her not walking yet was because I knew she had the strength/ability to walk and she was just doing it on her own time, which was fine by me. I didn't think any therapy or outside devices would help her. As for Edwin, I feel his low tone is neurological in nature, although we don't have an MRI to showcase that. Additionally, his low tone needs to addressed in a strength-focused manner, and not as much "he'll do it when he's ready." I feel he can't "be ready" until we assist him because he simply doesn't have the muscle strength to stand on his on and begin to take steps. Without unassisted standing there will be no walking, and I feel we need to address him not standing up straight without holding on.
As for therapy getting in the way of "living in the moment;" it never does. His "therapy" is strictly "play therapy" in our home where we attempt to sit him on his bum to play with toys. And do side sitting with toys. Crawling on his hands and knees came solely from him belly crawling on the floor to play "tag" with sis or to fight for toys. Over time he got stronger and found it was more efficient to crawl on hands and knees as opposed to dragging his belly on the floor. He certainly WANTS to be upright and walk, but is limited to the couch, push toy, play area, or pulling up on our legs and trying to "walk" around holding our legs. I guess I see his desire to want to walk and see that there is a PHYSICAL reason he is not, as opposed to Serena who was just cautious about it. He only receives PT every other week in our home for an hour. I do not feel it interferes with him enjoying life at all because it's just like every day, playing and being entertained.

My major concern is because he does not have a diagnosis he is being seen as a delayed child as opposed to a child who has a medical issue that is getting in the way of development. Instead of him simply "not walking" I see it more as "not having the muscle tone to walk" yet. So I really want to focus on this before more time goes by and we're told, he has cerebral palsy and will need a walker to walk for awhile, or worse yet, continue on the path we're on which is to simply "wait" until he does it without supporting him along the way. My thoughts are, if a walker won't hurt, why not allow him to experience life in an upright position with independence as opposed to carrying him or putting him a stroller while we are outside of our home? Why not allow him to flash that smile of pride I've seen on the faces our of fellow preemie friends Dakota, Riley, and Andrew? I know he CAN do it and I want him to be given every opportunity to live up to HIS potential.

I never lose sight on how far Edwin (and Serena) have come. I am extremely proud of them and astonished at how amazing they are. They are 23 weekers who are defying SOOO many odds. I video tape and capture in pictures all of their achievements and am sure to blog about it and call everyone in our family to tell them all the new things they are doing. I am so proud that Edwin is crawling on his hands and knees, and he is proud of himself which means even more to me.
It does sting to have Serena up and walking and knowing her brother is confined to crawling, being held, or seated in a stroller. Because I know he is capable of being upright in a walker, I guess I just want him to try it to see if he enjoys it; to see if he wants to utilize it to help in the progress of one day learning to walk.

So here is what I have done to try and get he ball moving on a second opinion:
Awhile back I called the rehab hospital affiliated with our large hospital. They will not see children Edwin's age unless there is a short term goal, like rehab after a broken bone. Yesterday I called a private physical therapy location and they will not see a child as young as E. That's when I called the orthopedist back and moved up our appointment so he could be seen by their PT as well just for an independent PT eval. I also called a couple of toddler gyms, none of which have classes for special needs children, but do do inclusion and I signed the kids up for a free trial next week (if S is up to it after her vocal cord surgery.) I then searched again (I have many times) for aquatic therapy for children. I couldn't find anything, but called our local Y and asked if by any chance they had a PT who did aquatic therapy. To my delight they did and I waited for a call back from him. I spoke to him last night and come to find out he knows Edwin, Sr, as he has trained many professional athletes and Edwin has met him before. He is actually very good friends with Edwin's manager and I had forgotten that awhile back his manager said they would probably be including strength training in a pool for Edwin's strength and conditioning. I actually mentioned that I wanted to have Ej do aquatic therapy, but never did I think this friend of his manager would be able to help EJ and apparently his manager didn't know Peter did children either. But it all worked out, and it is certainly a small world. So we go to meet with him on Friday and Serena will come as well because I want her to have fun in the water too. I am really excited about this and think it will be an extra fun way to help Edwin with his strength, and get both familiar and comfortable in the water.
I also spoke to our EI worker about writing up something for our insurance regarding hippotherapy because when I asked PT a couple of weeks ago she said he is too young (not true they begin at 18 months at the place I want to go) and said by the time he would be big enough to do it he won't need it. This is part of my frustration with PT. How does she know he won't need to increase strength in his trunk in a few months? Why would you not think this low tone would persist considering how much it affects him now, especially given his birth history?
I guess that's what I mean about being a realist. I am not the type to say "everything will be fine" not in the NICU and not now. I think it is vital to be as realistic as possible because I feel it makes me a better parent, preparing for what could lie ahead. I would never have been able to be fair to Edwin in the NICU, making the heart wrenching decision to make him a DNR at one point because he was maxed out on the oscillator. I truly did not think it was fair to medically restart his heart at that point...if he was trying to die I was going to honor that. I told him I wanted him to stay here with us more than anything in the world, but that if it was too hard and the pain was just too great he could show us that and we would honor that. I know I couldn't have made that decision without being realistic about how sick he was. Thank God we never had to face that DNR order and we removed it quickly only 2 days later as he drastically improved after his PDA ligation. Living in a world where I pretend Edwin or Serena will be "healed" completely is just not a place I chose to live. I plan to help support them along their way and give them the tools to do everything they can on their own. We are going to continue to face medical and developmental hurdles along the way and I am prepared as much as I can be for that. I'm trying to learn to remain diplomatic but at the same time trying to be assertive and do what I can to help them and one day empowering them to help and advocate for themselves.

Anyway, I am super excited for Friday when we will meet Peter and hopefully learn a little more about what he does. He was trained under Igor Burdenko (you can google it) and supposedly he is one of the best in the world. Add to that he knows Edwin, Sr (and wants to be able to train him as well), and has been following our "story" in the local paper, I know he has a personal connection to us and last night said to me "We'll work on the cost, don't worry about that. What we are going to do is to get Edwin, Jr strong. He is going to do amazing things." And we're going to do it as a family and it will be so fun!!!!