A lengthy update

So I have been pretty good at posting a lot of cute pictures of the kids, but have not written much on how they are developing.

There is a lot of news.
First off...we had our appointment with orthopedics. PT came (the one who disagrees with the AFOs.) Her last day was last Friday, but it was worth her going since she had really been trying to convince me AFOs are hindering, not helping, E.
THe doc disagreed, and felt it is hard to really tell the benefit because he does not walk, stand independently, or walk well in his walker...(he takes 12-15 steps, but usally drops to his knees to crawl...it's faster and easier afterall.)
So the plan is to wear the AFOs 1/2 of the time in the walker, and 1/2 time with plain sneakers. Then we can see if we notice a difference between the two as he improves in his walker.
The new PT started today, and I couldn't be there, but will get the update this evening. I've met her before and she is really nice, and hopefully has some good ideas for our little guy.
Edwin now has 3 signs..."more" "eat" and "all done." He is pretty consistent with them and uses them appropriately, often without prompting. We are trying to introduce other signs, slowly, every day.
At their NICU follow-up yesterday I voiced my many concerns related to E not walking and not talking. He did wonderfully with attention space and did well with fine motor while sitting in a wooden chair. His trunk is still so low toned that it is harder for him to use his hands gracefully and smoothly, but he can accomplish many tasks. Basically, he has improved 4 months development wise since we last saw them 6 months ago. He is still significantly delayed.
Yesterday was the first time anyone said anything to us about possible apraxia, although of course I figured it was coming. This website explains apracia of speech well for any who don't know what it is. http://www.apraxia-kids.org/site/apps/nlnet/content.aspx?c=chKMI0PIIsE&b=839037&ct=837215
It's begining to get a little stressful and heartbreaking that our guy is not walking, standing independently, or talking at all. We went from an infant who was delayed, to a toddler who is significantly delayed in areas that are directly impacting his life, and ours. And I can't deny I am worried and a bit overwhelmed at the thought of just how far he is falling behind.
I try to stay positive and focus on our next steps, which onclude continuing to use sign, creating a picture book of things in his world that he needs to point to to tell us he wants, and labeling things so we can tell him the word and get him to identify it, if even by sight and not by word.
I am also going to lok into a clinic about an hour away which specializes in communication adaptations/strategies for nonverbal children.
We were told they do not think he will be totally nonverbal, but we have to prepare for what can help him now, because he is not talking, and we need to eliminate as much of his frustration as possible.
As for his low tone...still no one wants to say CP. We see neuro at the end of January and then we'll see. I guess they are seeing more of this pervasive low tone, which impairs children who had severe respiratory illness, but I tend to think it is neurological and a result of the damage his brain suffered with lack of oxygen and his extreme prematurity in general. Usually, strictly hypotonic CP is quite severe and the child can't pull to stand, but this rarer "breed" of mild hypotnic CP seems to fit Edwin, even if no one else wants to see it. He still has no tightness, which I am very grateful for, because spascity can be painful, and can demand surgeries and botox. It seems to me he will get stronger with time, but that his hypotonia is not going to resolve completely...it will impact his life.
On a high note, his attentiveness was excellent and he is very interested in things and focuses very hard. He doesn't give up, and will scan the page intently trying to locate the object he saw on the previous page. He tries so hard, it just breaks my heart that everything is such a challenge for him. I wish I could just fix everything!
As for Serena, she is doing well. Her attention span isn't great, but that could be typical of being a 2 year old. Her balance is not good, and she needs to work on it with practice. She can not walk down stairs because when she tightens her quad muscle, she doesn't release it to take the step down...and thus end up walking/falling down the stairs like athe stiff legged Tin Man would. That will just take practice and work with PT, who I am insisting begins seeing her in addition to seeing Edwin.
Her language is coming along great and she can follow multi step directions with ease. She is begining to put two words together, can name some colors (blue and red), knows that 2 comes after 1, and knows most of her body parts and her favorite animals/characters from boks. She knows a coo says "moo" and that cookie monster says "nahr, narh, narh" (Daddy does that to her..."Mmmmm Cookie! Narh, Narh, NArh!). It's really cute. She is also now learning spanish via Daddy, and says "Hola!"

On another positive note, both kids are sleeping through the night without O2. This means they are basically 100% off of O2, minus when they have a cold (they need O2 to sleep when they have a cold.)
So it's good and bad...good because their lungs are better and bad because we will lose nursing and I depend on them to be home with the kids while I work and while Edwin works/school/and trains full time for boxing. So I am semi panicked for what we'll do, but it'll work out somehow.
Daycare is not an option because of the risk of getting sick, the lack of knowledge they will have with a nonverbal/nonwalking two year old, and who will do their therapies? Now, they come to our home with the nurse and I come home on lunch break for PT. I think we can get a PCA in the home because of the delays and risk of illness, but I'm not sure and of course, scared to have new people in the home with them. Our nurses know them so well and they feel comfortable with their needs. Ugh....STRESS!!!

Anyay, better get back to work. More to come!
P.s. Edwin and I are going to Florida on Monday for a 3 day getaway (the kids will be with my mom.) Can't WAIT! But am going to miss my darlings incredibly!!!!!!