SOOO upset right now

I am so upset right now, and it's late and no one is awake and I have to vent.
While reading one of the blogs I regularly read I was linked to another blog. I just sent this mom a comment on her blog asking her to contact me because her son's development is strikingly similar to Edwin's. She hasn't responded since it's so late and I shouldn't even be awake, so I don't want to give too much detail even though the blog is public. I want to wait for her permission. But her description of her son is sooo similar to Edwin with respect to the low trunk tone, the belly crawling, pulling to stand and cruising but resting his trunk/chest, etc etc. He has been given an official dx of mild hypotonic CP, what I believe Edwin has, and his PT has introduced a reverse walker and he has had DAFOs for months (he is about EJ's age.)
I am so angry with our therapists. I have taken Edwin to a developmental eval with his pedi, to a neurologist, to NICU follow-up, weekly EI/OT/PT all with evals, and NO ONE has suggested any equipment to help him. I have asked and asked about a CP dx and no one wants to give it.

This means when I tried to join a CP support group months ago I was denied because my son didn't have an official dx even though I explained in detail my concerns about his tone and wanted some support. Well I'm sorry, he doesn't have a dx but my son doesn't even sit up for more than a few seconds and he is 19 months old! He CLEARLY is hypotonic and it effects his play and exploration. I could have met this mom or others months ago and knew specifically what to ask for...DAFOs and a reverse walker. (I'm sorry but I am really hurt I was denied this support based on hesitation by specific doctors.)

WHY am *I* searching for these things. Why isn't he getting the therapy/care he needs. I am doing my part and I'm a parent with ZERO experience in hypotonia! Why do kids younger than EJ have reverse walkers and yet no one has ever offered it for him? Why haven't they tried DAFOs when he's ankles are clearly weak and not straight when standing??? Why do I feel like I am running an uphill battle, and instead of listening, everyone tells me is he's making progress and doing well.
Of course he is...no thanks to any of you "professionals!" He is learning all this by himself and in the meantime learning to do it without using his trunk muscles because you're not giving him the equipment he needs to force him to do this! He leans on his push toy to "walk" now, further limiting the use of his trunk. Why should I know this? Why aren't you pointing this out to me?!?
I'm sorry, but I am so upset right now. I feel like my son has been jipped and hasn't got the care he needs. I feel guilty because I can't afford private therapy and have been dependent on what insurance covers, although have gone out of my way to set up appointments with neuro and a special developmental appoint with our pedi. PT is suppose to be "the best" and yet why haven't we tried anything with him other than some basic stuff on our living room floor?
I wish it were Monday now because I am calling EVERYONE I can to get things in order. I want Edwin to have the very best chance to live to his potential and they are limiting that. I want him evaluated for DAFOs and I want a reverse walker in here asap. He WANTS to walk around and instead of saying "it's going to be awhile before he can walk" why don't you give him a piece of equipment that will help him do it NOW??? I want intensive PT and I want it yesterday. I'm not going to be as nice anymore, this is bs. I want a dx so I can join that CP support group and figure out from CP parents what other things I should do for him.

What makes me even more angry is Edwin tries so hard! He should have been given more attention by these professionals and should have been given chances to prove himself with appropriate help from medical equipment. I wish I had known sooner. I hadn't found any children who mirrored Edwin's low tone until tonight by chance. I wish I had been able to utilize the CP support group earlier because clearly he is hypotonic and it's not "going away" like transient dystonia does. It gets better, but it's there and it impacts his ability to even sit up.

Why is there such disparity between professionals in diagnosing kids and why is there such marked differences in therapy services?!?!
As you can tell I'm really angry...but I feel better now that I vented. By the way I'm up because I had to wait to hear from Daddy...he won his 5th professional fight by first round knock out...yay Daddy! I didn't want to upset him and tell him about how I feel Edwin has not been getting what he needs via the PT and specialists, but thankfully I have my blog to "let it out."
I just want what's best for my children, and I am so upset that no one has been listening to my concerns about Edwin and that I have to search for kids similar to him on my own because I knew there was more PT should have been doing.
I'll keep you all updated on how things go.

In good news, Serena is walking now...not just a few steps here and there but really walking. And she learned the word "dog" today since my aunt is visiting and brought her dog Jackson. Oh yeah, and she has been saying "hi" and waving for a week or so. That's as upbeat as I can get right now. Tune in tomorrow/Monday.