Suzy is doing great!
We made it through our first battle of pneumonia. She recovered nicely. We are fortunate. Many children end up with a stay at the hospital. We caught it quick.
We were planning to go to NY tomorrow, but we had to cancel our trip. She was going to participate in ABM therapy with Marcy (one of the 'leading ladies' in the world of ABM.) It ended up not being a good idea to travel (to a cold and wet city) after being so sick. It also costs so much more than doing it in VA or NC. So we postponed our NY trip a couple of months.
Our next 'travel event' will be in 1 week, (on March 23rd) to Black Mountain, NC, to see John Robson. We will do ABM therapy for 4 days. He is the same fellow we saw last month. We are excited to be going. He worked so well with Suzy.
Last week, while in DC, we worked with Carla doing ABM therapy. Carla pointed out some of her insight on Suzy. She feels that Suzy has many 'positives' going on in her body -
1. She feels Suzy moves alot, and with a lot of 'intentions'. She is trying to move, and trying to execute the move (something that's not so obvious to the naked eye); but her movements are 'wrapped in a trap of spasticity'. In other words, some children, many who are born with CP, don't even know that they CAN make movements, and they lay still and very floppy. Suzy KNEW how to make the movements, and COULD make them for 11 months of her life - a good thing. Unfortunatly, now her brain damage is causing her brain to send incorrect signals. It is firing off contraction signals, but Suzy might want to extend that muscle. But the brain KEEPS firing this contraction signal and so her arm (or leg, or ankle, or hand, etc) stays TIGHT and contracted. The muscle 'tone' is described as being SPASTIC. This can be painful. And it is surely frustrating for poor Su.
However, Carla said we are going to teach Suzy how to over-ride the spasticity. (wouldn't that be a treat???)
2. She feels Suzy is very much 'in there.' Suzy listens closely and pays attention to what's going on around her. Carla wants us to talk to her like a 3 year old, and not the baby we think of her as. And for us to constantly remind ourselves that Suzy probably understands much more than we give her credit for.
3. Suzy is an oral eater. This is a positive, because eating is a primal instinct. Therefore, the brain is really paying attention to eating. So, eating time is now going to be a big learning time for Suzy. Carla is teaching me many little things I can do with Suzy while feeding her that will stimulate her, and cause 'learning'. I will give her lots of choices and decisions to make while eating. Each time a person 'learns' something, they are creating new connections in the brain. We are going to build on those connections.
I said to Carla, "I have a dream that we can teach her to drink from her own bottle."
Carla said, "A bottle? She's 3! I'm going to have her drinking from a CUP."
OMG!!! (the pessimist in me said, "I'll believe it when I see it. This child can hardly bend her elbows from all the tightness".)
Suzy's muscle tone is actually "mixed" tone - she has some spastic muscles ("too tight") and some floppy muscles ("too loose"). However, none of it's really a muscle problem. Her muscles are just fine. It's a brain problem - the communication from the brain to the muscle is all crapped up.
The other 'problem' Suzy has to overcome is her unfortunate REFLEXES. She has unwanted reflexes that get in the way of her purposeful movements. We are all born with these reflexes; but we integrate them by about 9 months (depending on the reflex). The brain damage brought these back out. The most troublesome is her ATNR - (Asymmetrical Tonic Neck Reflex). When she turns her neck to the right, her right arm extends outward, and her left arm bends inward! And when she turns to the left, the opposite happens. I was really hoping this would be gone by now - but we are far from it!! It's still very much around and getting in her way.
Other disadvantages - she sticks out her chest and leans backwards instead of staying upright. She collapses at the knees when she's trying to stand. She rests her head on the back of her neck. Her balance is crappy. When she wants to reach her arm front-ward, her arm pulls backward. Also, the right side of her is more involved than her left side. Therefore, her whole right side contracts a little more. This causes her to lean to the right. When she's laying on the ground she looks like a backwards letter C. And when she's standing, she leans over to the right. Scoliosis - here we come!
Carla confirmed that we have A LOT of work to do (duh!), and it's not a miracle, and it would take years of hard work to meet all of the goals I have for Suzy.....
But we're up to the challenge....
She's the cutest love-bug in the world - she's worth it.
This week is going to be nice and normal. She will do PT with Karen at the gym 4 days. She has ST (speech) on Wednesday. And her 'home-school' special education teacher, Miss Nina, will be here on Wed. and Friday to teach her a few things. We no longer have an OT - I need to get working on that.
Jenny will be here for 25 hours this week (back to normal!!!). Jenny was out of town last week on vacation and we missed her like CRAZY!! I'm not sure who missed her more - ME or Suzy.
I know, I know, I know.... Too Much Information. Sorry. I got carried away with explaining details tonight. Thank you for listening to me ramble.
Hope you and your family are doing well, and staying healthy.