Happy Happy Birthday!!

We celebrated Lucas' 3rd birthday on Saturday!! Wow, where has the time gone? So hard to believe he's three!! We celebrated it in Orlando this past weekend and just returned home. I have lots of pictures from this weekend that I'll post later this week.

Prior to leaving for our weekend in Florida, we had a special morning on Friday with Lucas in a training class. I mentioned a few weeks ago that we started a new method (Musgatova Method) for reflex integration, which is a complement to the Anat Baniel Method. This past weekend, Svetlana Musgatova herself was in Bethesda teaching a 4-day training course to therapists. Our Musgatova practitioner, Mary, asked Lucas to be the "demo" child, for her to work on and demonstrate at the training. We jumped at the opportunity to meet her, and also to have her hands on Lucas, we delayed our trip to FL to take advantage of this opportunity. She is typically $400 for a 30 minute session! Getting this expertise at no charge was also a nice bonus! Our ABM therapist was there and Marcy traveled in from New York, and I was surprised when we walked in to find our holistic pediatrician/nutritionist there, Dr. Razi. The minute we walked in, Dr. Razi jumped from her seat and ran over to greet us, gave me a hug and Lucas a kiss. She's so sweet!

We were so honored to have Lucas be part of this, and he did awesome being center stage in front of about 35 therapists. He was very tolerant of her hands on him and was charming and smiley, as usual. He had the therapists in the room smiling, and many times we heard "awwww" and people whispering "he's so cute!" to each other. Mary turned to me several times and said, "He is the PERFECT child for this!" We beamed with pride the whole time!

The most fascinating part was listening to what she had to say as she assessed his body and the reflexes he is holding onto that are holding him back, and the lack of symmetry between the left and right sides of the body (no surprise there). Her goal is to help him integrate the two sides. It was amazing to see changes in him in the short time she worked with him. She said she would relay her thoughts to our practitioner to continue working on things. Bran and I are also considering enrolling him/us in the Musgatova 8-day boot camp workshop for child and parents, which we've heard gives tremendous results (as she works with your child for 6 hours a day on integrating these reflexes). These workshops are extremely expensive though, so we will see if we'll be able to do it later this summer, not sure at this point.

Our session ended with her talking to Lucas about how he "will walk one day" and told us to give him a year and a half (but that she expects with all the potential she sees in him, that he will start really progressing in about 6 months, as we work on all of these things). Then he told her, "Happy Birthday," which prompted the entire room to sing to him. So moving... I couldn't think of a better birthday present for him.

I've included a few updates from this past month, sorry for the dump of information again! I actually wrote them last week but didn't get the chance to insert the pictures and post until now. I'll post pics of our weekend soon!

Birthday dinner at the Disney Hotel
Make a wish... you can probably guess what I wished for!

Movin' On Up

Look at our boy standing today!!

This week marks a new chapter for us, Lucas turns three on Saturday, which means the end of our Early Intervention program with the county. This means we lose all of the therapists we have gotten to know so well and become an important part of our lives. Yesterday we said goodbye to Bev and Amy (his Vision Teacher and OT), and today we had our last appointments with Michele and Debbie (Speech and PT). The toughest for me was Bev leaving, she's been with us since the very beginning, when Lucas wasn't seeing anything and I thought we were faced with a life of blindness. I will never forget the day she walked in and gave us so much hope. I also remember the first time she got him to look at something, she took his little green puppy from his bouncy seat and found a visual field he would respond to on the far left (kids with CVI will often be partial to a certain color and only respond to that one color for awhile). She worked through several objects, colors, and fields, to finally learn that he preferred green. The memory is so clear as she excitedly said, "Did you see that Mommy? He LOOKED at it that time!" I remember crying... God bless her for coming into our lives when she did.

Bev has also been our main coordinator of all of his services... so she's been with us through all the changes of the last 2 1/2 years, helped us remove the therapist that we weren't fond of, rode through the ups and downs of his illnesses, ER visits and surgeries (and even called after each one of them to see how he made it through). She's helped me cope with the challenges and emotions of having a child with special needs, and there's been no bigger cheerleader in his corner. She's truly watched him blossom. I cried when she left, for many reasons... because she will be missed by Lucas and me, and I feel so lucky to have had people like this in Lucas' life, that truly and genuinely care about him. And truth be told, I'm kind of sad that we are entering a new era!

For the first time yesterday without any prompting, Lucas said "Bev!" when she walked in and many times throughout the session. The timing was ironic, it made me sad too that he finally learned her name, and now she's gone! Bev and Amy sang "Happy Birthday" to Lucas with a toy cake that he got to take apart, then gave him a gift to unwrap of a series of books that they all signed. Amy and Bev took turns holding him toward the end to get hugs and cuddles. I could tell is was tough for them too, they have gotten very attached to his little smiling face and personality every week. I called Bran bawling after they left... although I also was sick at home and feeling crappy overall that day, so that may have contributed to me being a complete crying mess! :-)

But I can't believe this time is already upon us, I've been looking forward to school, but now I'm scared to death! He's sooooo little, I'm having a hard time imagining him in a classroom. He's so far from a typical three year old, and about half the size. But-- this is why we chose to send him, so he can become more like a typical three year old. I know he will gain so much from this particular class, and we feel deep down that is the right thing. Note: we had the choice of keeping him home til 5 yrs old in this early intervention program because MD passed a new law this year, but we chose to send him to this vision class now because we feel he will benefit from the social interaction and all the educational gains.

We had our official transition meeting with the school last week, to go over his IEP (Individualized Education Plan) and met all of his new therapists. He'll have a vision teacher leading the class, plus an OT, PT, and Speech Therapist, that will spend one-on-one time with him every week and work on his goals. Its going to be a good thing, I know it. But will be hard for Mommy the first day, I have no doubt. He starts on April 7 from 9-12 every day.

We are heading to Orlando on Friday will celebrate Lucas' birthday with Mickey on Saturday (or at least I hope to get just one picture with Mickey to say we did)! We'll drive down to visit my Grandma Treva on Friday, then meet up with my friends Marcia and Anna on Saturday. I can't wait! I have a conference that starts there on Sunday, so Bran and Lucas will head back home after the weekend while I stay on. We then head to Ohio with all the kids at the end of next week for Easter and will officially have his birthday party with my family. Lots of plans!

Playing on the exercise ball with Debbie during our last session.

Look how tall he is! LOVE seeing him like this!

Standing up!

Bev and Amy singing Happy Birthday to Lucas in their last visit

Here's an adorable video, he's so proud of himself for getting the cups in.

Appointments, Therapy & More!

Here's a quick summary of some recent appointments and our trip to New York...

We saw the Ophthalmologist on March 8, everything is status quo and the plan is still to wait a couple years for surgery to cosmetically align the eyes. He felt that his eye behavior showed improvement, noting that his nystagmus (shaking of the eyes) almost stops completely when he looks to the left (his best visual field). He also said it appears his eyes are working more together when he's looking to the left. He feels that his visual field to the right and above are showing improvements from six months ago and hopes that the nystagmus he experiences when looking in these directions will deaden over time. He still feels that surgery right now carries too much risk of making him lose vision, and wants to let the brain keep figuring things out. Surgery for him will be purely cosmetic and will have no impact on helping him with vision, so we will wait another year to a few years before correcting it.

All of Lucas' blood tests came back normal (the mono test and the initial thyroid screening). This was good news, although expected, because Lucas started to behave normally with his sleep a couple days after we did all the bloodwork. So we assume we can chalk up his excessive sleep to brain overactivity. Our PT told me about a book that a woman wrote about her experience coming back from a stroke, and how she would literally work five minutes, then sleep two hours... due to all the brain activity and exhaustion. The pediatrician said he still wants us to see an Endocronologist for more in-depth testing on his pituitary function. He called one of the specialists at NIH (which is conveniently right across the street from us and he feels they are the best), he discussed Lucas' history and recent statistics and the doctor there wants to run some additional bloodwork to be sure, and also some genetic testing. Brain injuries have a common link to the normal pituitory gland behavior. So, add one doc more to the list!! Fingers crossed that everything comes back normal!

That gets all the medical updates out of the way... on to the bigger stuff. We went to New York last weekend for 6 sessions with Marcy again. It was a good trip, although nothing major to report. It was an extremely windy, rainy weekend, so the 3 block walk twice a day was not fun! Poor Lucas had to ride in a completely covered stroller as Bran and I ran through gusts of wind and rain. Fun!

The weekend brought about some concern to have me calling Dr. Nuzzo in NJ. Although Lucas' legs are remarkably better in the hips and hamstrings, he is having spasms in the hip extensors (the muscle in the front above the quads) and Marcy noted that he seemed to be hurting in certain positions. This is something I noticed prior to going to New York, but wasn't sure if it was still due to spasms or some old behavior in the nerves untouched by the surgery. When he is on his belly, they tighten up and he's almost in small triangle at his waist. All of this was probably there before, but since his entire lower half tensed up we couldn't see it.

I called the doctor and sent him several videos to watch. He didn't feel his behavior was a result of the surgery, but that getting rid of the spastic hamstrings and hip adductors has now revealed another underlying pattern of deep spasticity. He feels that his behavior is concerning, in that it mimicks what he sees in anoxic brain injuries and spine/neck cases, or could be a result of a spinal issue. He wants us to get an MRI of his spine right away to take a closer look and wants to rule out a tethered spine. However, there is an equal chance that the behavior is just a nasty pattern that we have to work through with therapy... but at least if we get an MRI, we'll know what we're dealing with. I'm working on scheduling the MRI now with his neurologist, so hopefully we'll know by next month.

Other than this little mystery, he's doing fantastic with his new legs! He is learning to stand for a few seconds with his quads the right way, and they are getting stronger every day. He's a long way from standing on his own or walking, but we're working on stregthening and new movements right now. He is sitting better and better, and this week we saw him turn to look behind him while sitting in a long leg sit (something he's never been able to do before). We still have a major issue with balance and getting him to catch himself with his left hand (he doesn't recognize to put it down to stop himself from falling) but we continue to work. Our therapists are still seeing great changes in him from week to week, using new muscles and moving in brand new ways. Some of these changes are subtle, so it could still take some time to see any major milestones... but we'll take any baby steps we can get!

My best friend visited us last weekend and she couldn't get over the changes in him since Christmas -- both physically and with his language. She said it was like holding another child the moment she picked him up. :-) So, I still feel like we made the right decision with this surgery.

Last note, his language is really taking off with better pronunciation and starting to put two words together and pronunciation. He's even started trying to sing, which is adorable beyond words. He sings part of the alphabet song, and it reminds me of Alfalfa from the Little Rascals as he tries to hit the notes... so cute! I hope I can capture it soon on video.

Walks twice a day in this windy, rainy mess in New York!

Check out my broken umbrella, the wind was crazy as we had to completely close up Lucas in his stroller

Fun!Cute video from therapy, being a giraffe and standing tall

This picture cracks me up, he looks so grown up! We're working on those fine motor skills to feed ourselves!Big boy sitting by himself for the first time for a haircut

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!

Surgery Explanations

I didn't do a very good job at explaining the Alcohol Block (nerve block) in my previous update, so here is a better explanation of how it works. The most impactful statement below is that: "Children can't learn what does what when no mater what they do - everything happens. Much of the motor learning delay that we see is from kids trying to figure out what to suppress in order to just get the one thing they want. They learn oddball secondary acts which seem to inhibit the unwanted actions."

This sums up what was happening in Lucas every time he'd try to make a movement (even just to play with a toy in his hands)... EVERYTHING would happen. See the analogy below about the light switch. The alcohol block that we had done last week eliminated this over-firing by slowing the transmission down.

PS, for fellow preemie parents that follow our blog, here is the link to Dr. Nuzzo's site, which will explain SPML and Alcohol Block in much better detail. The SPML procedure stands for "Selective Percutaneous Myofascial Lengthening"... this is not to be confused with the more traditional surgery of "Percutaneous Lengthinging". The SPML procedure we had done is very, very different, as explained on the website. Lucas' incisions are the size of a small needle in about 6 places (as opposed to "zipper" scars all the way down the leg that comes with the traditional invasive perc lengthening surgery).

*****

Alcohol Block:

Alcohol is a good chemical defatting agent. Rub it on your hands and see how chafed they get. That last feature is what we use alcohol for. Fat removal. It is used in window cleaning agents for that chemical trait.

Nerves come in two main sorts, those with fat envelopes and those without. The fat insulation speeds up the nerve transmission chemistry by insulating it from the general circulating milieu, the part with chloride and sodium and potassium and calcium ions just itching to pour through neural pores. Fat covered nerves conduct faster by controlling that conduction specific milieu and focusing the ion current to receptive nodes.

If there is a nerve that, innocent as it may be, is carrying way too much data as inappropriate bursts of spastic overly repetitive pulses, then placing a speed bump on that nerve can reduce the ill of that overactivity.

Alcohol injected right on the nerve directly, strips off the fat from that location and slows conduction there. Multiple speeding impulses pile up and come through as one single impulse. So a stream of impulses such as :

gogogogogogogogog-----gogogogogogo-----

comes through the block area as:

go-----go-----go-----go----- Engineers call this a low pass filter.

When a muscle gets hit with a single "go" it responds. When it gets hit with a barrage of gogogogogogogogog it gets thrown into tetany, a rigid hard to undo contractile state. Worse, it screams for help over feed back circuits which (in spasticity) are mistakenly linked into the motor circuits by reflex spinal pathways.

Slowing certain nerves in the loop can drop the recruitment of the reflex mechanisms which get drawn into the fray from further and further away in the spinal pathways as the recruitment gets worse.

The result of aborting that run away reflex recruitment of far away muscles is not just less overactivity of the muscles supplied by the nerve but more precision. Precision? Yes. Often a child cannot just activate a single muscle without getting a smorgasbord of other stuff at the same time. Indeed, the youngster may not even know that there is such a thing as just that muscle.

Imagine if you flip a switch in your house and every single time the toilet flushes, the TV goes on, the garbage disposal comes alive and a light goes on. Do you call that a light switch? Only if you can peel off the unwanted stuff, then yes.

This has impact on learning. Children can't learn what does what when no matter what they do - everything happens. Much of the motor learning delay that we see is from kids trying to figure what to suppress in order to just get the one thing they want. They learn oddball secondary acts which seem to inhibit the unwanted actions.