EI evaluation

Many weeks ago I contacted Early Intervention (EI) because Macsen is having trouble sitting and won't bear any weight on his legs. They had to evaluate him to see if he qualified - he had to be more than 25% delayed to be eligible for services. Well, yesterday we got the results and our little guy is pretty delayed - he's scoring at a 4 month level in some things up to 8 months. He just turned 10 months. Logically, it all makes sense. He has spent a large part of his life focused on healing from major surgeries so sitting and crawling were very secondary. But emotionally I am feeling sad and overwhelmed that he is so far behind. Things that just came so easily for his sisters, for other babies I know, seem extremely hard for him. Have you ever tried to teach a baby to crawl? To stand? Despite raising 2 other kids I never have. With the results come more appointments. Counting the 2 we have today we will have had 4 this week. He needs the help and I will do everything we can to get him what/where he needs. Just a few extra challenges. One of the biggest challenges isn't for Macsen or for me & Aaron but for the girls. During appointments, especially ones we have to drive to (Macsen cries, coughs and vomits if he doesn't have me sitting with him distracting him) they are stuck in the car - waiting in parking lots with Aaron and the DVD player on. Not exactly fun on a weekly basis. But they don't complain, sweet girls. I hope they don't start resenting him. One day, when M travels better,  I'll be able to make the trips to Dothan without Aaron so he can stay home with them.
His cardiology appointment in Pensacola on Monday went really well. He weighed in at 16 lbs putting him in the second percentile! He was very good during his echo - lying very still for about 90% of it. He's a very busy baby so that's quite a feat. His doctor said there was virtually no change from his echo last time. Great news! No tricuspid valve leakage. His BP looked good. ?His oxygen levels were in the low 80's - wish they were higher but they are still acceptable and pretty typical. We even took him off his heart function med and will go back to see her in September. The girls will be in school which will complicate our little "make every cardiology trip into a mini vacay" plan but we'll deal with those logistics when we get there. When I asked his doctor about the remnant of extra skin still barely visible at the base of M's neck she used a term I have never heard - asking every doctor/nurse/therapist that has ever treated him for anything. She called it a cystic hygroma and said it looked really good. Of course the googling began almost immediately and I have found a support group to ply with queries and questions. Got to love the internet! If you google it be forewarned there are some very severe cases/images that might make you very concerned for our little dude. Like I said his is almost gone and I am relieved to finally have a name and research to turn to for reassurance.
For now we have a few weeks left of summer we intend on cramming in another just for fun beach trip - no appointments!!!!!- a birthday party for C (7 yrs old!!!!) school shopping and a trip to Birmingham to the Mcwane science center. So excited!