Surgery Complete!

In less than 24 hours we went to New Jersey, had the surgery, and we were back home this afternoon! Everything went great, Lucas charmed all the nurses, as expected. He had to tell everyone "hi," and "good morning", and his newest thing... telling everyone "happy birthday." It was strange being in an OR with adult patients (since we're always at Children's), he was the only little tike in the recovery room, so we heard "awwww, he's so cute!" all morning.

Even though this is the 14th time he's been put under, it never gets easier taking your baby to the OR and watching them put a mask over his face to put him under. Watching him fight and whimper during the process is so hard, I walk out crying every time. But it was quickly over in one hour, and our little man was back.

The most amazing thing about this surgery, is the results we already see! When we were called back to Recovery, Dr. Nuzzo pulled back the blanket and showed us the leg braces Lucas will be in for the next 24 hours and while he sleeps over the next week. At first I thought his legs looked different because of the braces, but then the doctor said, "look how wide his legs are apart." WOW!!! We have never-ever seen this on Lucas. The spasticity in his hips keeps his legs constantly drawn together or crisscrossed, or when he sleeps, his legs draw up to his chest (like the fetal position). It was seriously like I was looking at another child's legs.

When he was ready to sit up, it was another surprise, as he sat up leaving the legs laying on the bed, wide, and straight. He sat in a 90 degree angle, not with his legs drawn up! Again... nothing we've ever seen before! He has never been able to sit with his legs straight or the back of the knee touching the floor while being upright. It may be a little different when the braces come off, but he is definitely sitting differently! **Take a look at the way he is sitting below, then scroll down to the last update with him in the tub. In the tub, his legs are as straight as they will go, and the legs are in a very typical position--close together (they couldn't get any further apart in the seated position a week ago). Pretty amazing.

I saw the doctor again just before leaving when Lucas was dressed and commented again on how strange it was to see his legs like that. Dr. Nuzzo said "and that's him in his natural relaxed state... its the alcohol block I put in acting immediately."

The ride home didn't go as smoothly as the fun he had in the recovery room, as the pain meds wore off and we had to wait about a half hour for the next dose. His crying broke my heart, but he bounced back slowly after he got another dose. We did a lot of singing in the car! He went immediately to sleep when we got home for several hours. He was only up for about an hour tonight before wanting to go right back to sleep. Along with pain medication, they sent us home with Valium every 6 hours to keep his muscles from spasms.

Here's hoping that tomorrow brings a much perkier little boy and less pain. I'm so excited about what comes next!!!

Right after surgery, look how tall he is sitting up!

Legs wide apart in natural sitting!
He has to wear the braces while he sleeps for about a week.

Dressed and ready to go home! I think he's giving Dad a "cheese" here.

Here's a cute video of him after surgery riding from the recovery room to the discharge room. He grabbed onto the side and loved the ride! When the nurse parked him into his new room, he yelled, "More!"

New York Update

Ok, so I got a little ahead of myself saying I'd have the update written in a couple days from my last post (I just posted 2 updates). You'd think with getting a double snow storm with 30", I'd have a lot of time on my hands... but it seemed to feel more like working overtime! I'm glad to see life getting back to normal this week.

Our trip to New York a couple weeks ago was great, we were there Saturday-Monday and saw Marcy two times a day for three days. Like the last time, we left there feeling really encouraged and hopeful... a much needed dose! I told her I feel like with his left arm issues, that he'll never crawl... her words, "never say never... he'll crawl." She worked a lot on army crawling with him over the three days (he can do it, he just needs to want to do it). Its easier for him to just flip over on his back and scoot that way... but moving around on his back doesn't give the building blocks for strength and coordination as crawling. She also did a lot of work opening up the use of his left arm. He responded so well! The difference in his arm after that three days was amazing. This woman has a gift, I tell you. I wish we could afford to see her every week, I know he'd be so much further along! Little things like putting on his jacket were noticeable, as we usually have to get maneuver the sleeve around his bent and sometimes rigid arm. By Monday, the jacket just slipped onto his beautifully straight arm.

I don't think there was a moment in our sessions where Lucas wasn't smiling or laughing. She's so good with him. At one point she was playing and acting silly with him and started laughing and said to me, "I don't usually act like this... there's just something about him that makes me like this." She told us at the end of our sessions that if she lived in DC, our other ABM therapists would have to fight her to have Lucas. She said, "Carla and Catherine? Forget it!" Ha.

We spent Sunday night outside the city in New Jersey for our early morning appointment on Monday with the Pediatric Orthopedic Surgeon, Dr. Nuzzo. A few weeks ago I mentioned in my update that the podiatrist that makes custom orthotics was looking at a DVD of Lucas' movement... his recommendation was that we start with the surgeon due to Lucas' very spastic hamstrings and hips.

We just got this appointment a few days before our trip, which was a surprise that we could get in. They had just received a cancellation right before I called and it happened to be in the only window we had on this trip for an appointment... it was like the stars were in alignment.

The timing was also great for us to have dinner with our friend Ronjohn (Bran's college roommate) and his parents in New Jersey... he happened to arrive on Sunday night for a week of business and was staying with his parents just 15 minutes from where we were staying! What timing! It was nice to see his Mom and Dad, who followed his blog all through the NICU and haven't seen Lucas since he was just out of the hospital.

Dr. Nuzzo confirmed concern with his hip adductors and hamstrings, and this being an obstacle to him moving forward. Basically, he spends all of his energy fighting to control the lower half of his body. Even when he is trying to just sit, the minute he needs to use his arms or if he loses the slightest balance, his brain tells the hamstrings to fire and they become rock hard and his hips draw the legs inward. At times, this spasticity will even often cause his legs to cross in front of him. This just doesn't work for sitting, crawling, or walking. He said there is so much confusion going on in Lucas, his brain is telling his legs to constantly fire and sending very busy and confusing signals. The doctor said his ankles looked great though, which is good news (ankles are commonly turned inward for kids with CP, and typically are included in surgical procedures). He doesn't feel that he needs to do anything with his ankles and that they are positioned nicely for eventually walking. He said he could see him wearing a small orthotic during his learning phase, so that he learns to position his feet properly. We will go back to the podiatrist we started with in a few months to discuss this. But hey... at least he's talking in terms of "when" he will walk. That's nice! Even Carla has made a few "wheelchair" references lately that I don't like, insinuating this is where he will end up. It was nice to hear so much optimism over this particular weekend!

The doctor was also happy with his hip sockets, they have not been damaged through improper standing (or from putting him in a stander too early, as some have recommended we do). The healthy outlook of his bones in this area is most likely due to the ABM work we've been doing, and not pushing things with him that he is not ready for. The doctor shared stories with us of the many hip replacements he's done in small children due to aggressive therapy techniques. We also talked about Botox shots and he is against this treatment for hips and legs, he said he recommends it in other areas of the body for muscle control, but not the hips/legs. This is something that so many doctors have brought up with us lately and telling us to do it to paralyze certain muscles in Lucas' legs to keep them from firing. Our neurologist just three days before was telling us to get him in to the Physiatrist in her office right away so that he could do Botox. It falls in line with the "traditional" methods, that we are finding out really don't work and end up causing more harm than good. Dr. Nuzzo talked about doing hip replacements on children for improper use of Botox, as well.

So... he is recommending surgery, which we have already scheduled for next Tuesday, 2/23. Dr. Nuzzo has developed a very non-invasive surgery, and is one of the only doctors in the US that approaches CP in this way. Anat Baniel herself sends people from California to have this procedure done by this doctor. For many years, doctors have been solving spasticity problems by cutting hamstrings, which is very invasive, risky, and should be more of a last resort. Nuzzo developed a surgery where he doesn't cut, but pokes small holes in the membrane that surrounds the muscle, which should allow it to lengthen. He will do this in 6 areas--throughout the hamstrings and hips. This should immediately free Lucas up to move, and most importantly, to allow him to "learn" how to move properly without all the internal confusion. He will also do an "alcohol block," which is an injection that will calm the nerves and signals that are over-responding right now (that's my best attempt to explain it in plain English... I won't bore you with the medical explanation and physics that I don't really understand myself)!

The doctor told us that he often hears from parents that they see an immediate difference as early as that that evening in their child's stability in sitting. He said its often a perception that a child doesn't have trunk strength due to how much they struggle to balance (which is something we've always thought needed more help in Lucas)... but it is actually their over-firing legs and the internal battle they have with their bodies when it happens, that makes it appear the torso is unstable.

This will be an outpatient surgery, and he'll only have very small pin needle scars on the back of his legs. With all the scars he has all over his hands and feet from countless needles the first five months of life, what's 6 more, right?! ~Sigh~ They say he'll be sore for a few days, but should be able to resume activities and PT the next day. I just hope he doesn't hurt much, its such a tough thing for a parent to choose an elective surgery.

It feels a little sudden to be embarking on this next week already, but we want to help free him up as soon as possible. Its been a whirlwind for me trying to get all of his pre-admission testing done for the surgery in time... I had a deadline of last Friday to run around in a snowstorm getting bloodwork, urinalysis, EKG, and a physical... at 4 different locations!

Marcy is very optimistic about what this surgery will do for him, and we trust in the fact that she has followed so many children for years after this procedure. We met a boy that weekend that had it two years prior, and she said there is no way he'd be walking today if it weren't for this. So, we are cautiously excited about what the next few weeks and months will bring. It is going to be important for us to hit therapy very hard during the weeks following the surgery because they said he'll be "ripe for learning."

So that's the latest until surgery next week! Here's a few pictures from the last few weeks.

In NY with Marcy

This was taken 10 minutes after leaving the city for three days. He's not a car sleeper, but he was SO tired from all the hard work!

The new kitten comes running every time we turn the bathwater on, Lucas gets so excited, and all we hear is "Hi te-te!" over and over. These pictures crack me up... a) because the cat fell into the water the other night while being nosy, and b) because he now mimics the cat's meow in a really high pitched voice. Its pretty funny... he's gone from just calling him "meow" to actually trying to get the pitch really high to sound like the cat.

Nosy Kittie

Chillin on his new ride

Loves the horn

His brand new accessory... the POINTER!

The girls encouraging Lucas to walk in his gait trainer... he's really starting to get the hang of it!

Dancing with Big Sister... you don't often get to see how tall he is!

Neurology Follow-Up

On January 29 (the Friday before we left for New York) we saw our Neurologist, which had been a year since the last visit. To remind everyone, she was the one that gave us the bad news of the bleed when Lucas was in the NICU, and the one who gave us the bleak future. I love going to see her! She was soooo excited to see Lucas and he did awesome at all her "tests". Everything she'd ask him, it was like we'd rehearsed the answers with him because he'd answer every one perfectly. I honestly don't think she expected him to actually "reply" to half her questions. My favorite one was when she said "how old are you now Lucas?"... but she was saying it more to herself as she searched for his birthdate on her paperwork. As plain as day he answered her, "two!" She laughed, the look on her face was priceless. Bran and I were smiling ear to ear. I have to give my typical disclaimer again here... yes, these are very typical 2 year old things to do (and he doesn't yet have as much comprehension or language than his 2 year old peers)... to be quite blunt, there was a day that she thought he'd be institutionalized. You have to put it into perspective. The fact that he was sitting there understanding her, answering questions, and building blocks on her table and laughing as he knocked them down... its just pretty remarkable.

The best part of the appointment was when she pulled up his recent MRI. She said, "I see why he is doing so well." She could see the development of myelin sheath (which is what surrounds the nerves, aka connections, within the brain). I know, its a lot to understand, now I wish I had paid more attention in my high school biology classes! She said they look to be developing normally and connections are being made properly in most of the brain! She said the level of connections that she can see "suggests a typical 2 year old brain." Wow! It was cool to hear someone actually confirm this fact with a brain scan... not measuring his progress by milestones and "should-be's" ... but cold, hard, indisputable data of seeing connections in the MRI! I love it! She said, "of course the area on the right will always be gone and will continue to cause challenges, but I'm so pleased that there is so much healthy activity occurring in the rest." She said she can also see that the area in the back of the brain with the damage from the stroke is slower to make connections, but she sees that they are starting to happen. She feels this is why his vision has improved so much over this past year.

She ended the appointment by saying, "its obvious that as his parents you are doing so much for him, for him to be improving like this... so congratulations." That was nice to hear. I know that it is not entirely us, it has a lot to do with his wonderful nanny, his nutrition, stimulation from the kids, and all the therapies he receives... but it is nice to hear validation that the decisions you make as a parent may have been the right ones. There isn't a day that goes by that I don't question if I'm doing the right things or doing enough to give him the most opportunity.