Big Changes!

A crazy busy week! Lucas is doing great and the difference in his legs and hips is really amazing. He bounced back very quickly, however, for several days he would wake up crying during his naps and through the night due to spasms, so we had to continue the Valium doses a little longer than expected. I called the doctor mid-week and he said it was a common reaction to kids with CP due to the leg braces being too snug while he slept and a lack of blood flow to certain areas causing painful spasms. I tried to loosen them to give him a little more room to move, but he still woke up crying a few times. So we stopped using them, and everything seems to be ok now (and he's not drawing up at all into the fetal position, which was the reason for wearing them after surgery).

When we saw each of our PT's for the first time, they were all blown away at the many differences. Our county PT, Debbie, had never seen any children after having SPML or alcohol block and she was amazed at the difference and how relaxed he now is in sitting. Also a very noticeable difference is how much less he pulls back his left arm, because he's not constantly battling his lower half. The left arm is much more relaxed and "available" now, and you can tell he is using it more to help with his right hand.

When we saw Catherine for ABM for our first session last week, she said she would work with Lucas the entire session to make him flexible enough to get into a particular position... but on this day, his legs went into position immediately! She also had never seen a child right after surgery, and said, "I've heard some incredible things about this surgery, but now I can really see it." I asked her how this compared to the many kids she's seen right after receiving Botox, she said "this is no comparison... with the kids that receive Botox in their legs, there is no improvement."

A few big differences to us right away... when we hold him on our hips, his legs no longer squeeze together like a vice...they are wide, open, and loose, like a typical child would feel on your hip. When I put him in the tub, I was able to latch the chair closed for the first time ever because his legs could lay flat! We went out to breakfast the other day and I went to get him out of the wooden high chair and he slipped right out as he initiated pulling his legs out (usually it takes two of us to get him out... one to lift, and the other one to maneuver his feet and legs out of the holes because he stiffens up). What a nice surprise, and so liberating!

So he's a lot more flexible and the legs aren't rigid and spastic, but it is also very clear that he has a lot to learn. He can no longer stand like he could before surgery, because what was really holding him up before was his spasticity. His hamstrings used to be like cables, which we can clearly see now that they were holding him up incorrectly. Now he has no muscle tone in the quadriceps or hamstrings because he never used them before. His brain not only has to learn to activate the proper muscles, he also needs to build these muscles. In the first few days after surgery he would not weight bear at all... but I am happy to report after several more days and 9 therapy sessions since surgery, he is coming up to stand... a bit wobbly and with assistance... but he's now doing it the proper way! He also has to learn how to use his torso to support himself rather than his rigidity. After surgery he was a little more wobbly in sitting and fell forward often (his rigid legs used to catch him)... but now he has to figure out how to support himself. I am also pleased to report that this is noticeably better over the last few days, and you can tell he's using his new muscles in his back... he's more extended than ever before.

All three of our PT's pointed out several new things he initiated during his sessions as "first time" movements... which means that he's starting to learn new ways of moving! Its all very exciting! But, I also don't want to paint a false picture, we have a long way to go... in many ways we have to go back to infancy and pick up movements he never learned before. This wasn't a miracle surgery, but we were able to remove a massive obstacle, which is giving us new opportunities.

Lucas has been sleeping a TON since the surgery, at first we thought it was the meds, but the extensive sleep continued after we stopped. It's been so extreme that he would go down for his nap at 1:30 and we'd have to wake him up for dinner, then back to bed... for several days in a row. When I told the surgeon this was going on, he said it has nothing to do with the surgery and if it continued, to have the pediatrician take a look. So we went on Friday and ran some bloodwork. The initial CBC came back normal (good that he's not fighting something) and the initial Mono test came back negative (although the ped said this test is not conclusive for little ones). We will have the rest of it back on Monday, with a second Mono test and some endocrine screenings (looking for any obvious signs of thyroid trouble). We were due to run these anyway because in his last pediatrician appointment, they said they were concerned that his height is not on the right curve and with his neuro issues, it is highly possible we could have some thyroid issues. So, we'll see how all that comes out.

Our primary PT, Carla, was away until this weekend, so we just completed an intense 4-sessions on Saturday & Sunday. He did great, but was pretty wiped out. Carla is convinced that the extreme tiredness we are seeing is due to how much the brain is working overtime right now (much like a baby behaves, sleeping a lot because the brain is working like crazing making connections). I would love for this to be the reason... if the bloodwork comes back normal, and he improves this week, it could very well be this!

Last week I also had a session with our practitioner for the Musgatova Method, which is a complement to our ABM therapy that helps with reflex integration. As you can imagine, Lucas's neurological system and reflexes are all very confused, and he has a countless number of reflexes that should have been integrated by now, but are not. This was our second visit with her (the first in November), and she is training me on a series of exercises and massage-like techniques to do daily to help promote the integration of these reflexes. More on this later, its all very fascinating, but too much to try to explain in this update!

The most important piece of all of this is that we can rest easier knowing we made the right decision with this surgery, and it is clear that it is starting to open doors for him. We decided to book another intense weekend with Marcy in New York next weekend, because we feel it is critical right now, and could be a great opportunity to leap forward.

PS, I added more detail about the procedures in a previous posting.

Playing a little game with Catherine in ABM therapy as he's controlling his sitting
Working with our PT Debbie, and our nanny Mirna
He's never been able to play with a toy between his legs before!
Getting the "te-tat's" tail
Another bathtub pic...check out those legs and compare it to the pics in update before surgery!
(and of course the kitten is always right there)

I love this picture... sitting so differently, and he's using his left hand to help him hold the book (something you don't see often)!

For comparison (and because its so darn cute)-- this was taken 2 weeks before surgery, legs bent is the only way he could ever sit (never out straight)... and notice the Boppy for support, he couldn't sit long with out it.
This is our cutie-pie neighbor... he's 1 year old; Lucas is almost 3 (and he is bigger than Lucas)... this is the reality of being a micro-preemie!

Here's a cute video of his new saying...

Anna feeding Lucas an orange, he says "cheese!" every time he sees any camera.
I can really see how much they look alike in this video!