Back in Business!!

Yes, we are still here! …if we even have any visitors left! I’m sorry we dropped off for so long! Things just got so busy between work, therapies, doctors appointments, trips, and kids... the blog updates slipped to the bottom of the never ending list of to-do’s. And so much has happened over these past months, the task to update was a bit daunting. I will try to summarize the highlights, and tell you how Lucas is doing now.

He’s back in preschool and loves it. The reports are that he is his charming little self in class, lots of smiles and hugs every day for the teachers and therapists. I’ve been told many times by the teachers, “he is such a pleasure” and “we just love him.” His PT wrote home to us last week saying, "I look forward to the days I see Lucas, he works so hard and always with a smile. He brightens my day." We feel so fortunate to have found this special school!

His speech continues to advance and he surprises us sometimes with his articulation. He’s using several words in a sentence now. My favorite phrase (among many) is hearing him say, "cat-in-da-hat shoes"... or when the radio is too loud in the car and he tells us "turn it down a bit" (sounding exactly like us when we tell him to turn his toy down. He knows all of his colors without hesitation. We are so proud of him! Pretty amazing for a child with vision impairment.

HUGS… that’s what he’s into now. “I want a hug, Mommy.” Nothing in the world better than hearing those words... then to feel the squeeze around my neck. Its usually followed by, “I want a kiss, Mommy.” And it doesn’t matter who it is… doctors, nurses, flight attendants... as soon as he meets someone, he asks “who is that?” He learns their name and immediately asks them for a hug.

I have to laugh at how bossy he’s gotten these past few months. We used to do therapy and he’d just participate pleasantly and quietly. Now, if he’s in an awkward position or it gets difficult, he just tells Carla, “no lay on tummy, Carla” or “I want to sit up Carla.” And we’ve officially learned the word, “no”. I know its usually the first word for a lot of kids, but it took him a long time to differentiate between yes and no. Not anymore! "Lucas, do you want to take a bath?" "No take da bath Mommy". Or he'll ask me to sing a song... I'll start it, and he'll cut me off if he doesn't like the song... "no twinkle twinkle mommy." But I'll admit that even “no” makes us proud!

Motor skills continue to be a lesson in patience. We continue to work hard and are focus on the small changes that we hope will eventually lead to bigger ones. When I get frustrated, I try to remind myself of this quote from Anat Baniel, “Celebrate small things. Love and appreciate the change. The genius is in noticing the small changes. Any idiot can notice the big changes." I love the part about the genius is in noticing the small changes… we notice that he is opening his left hand more to grasp, and uses it more to assist in holding things; and we've noticed that in a chair, he can now pull his knees up and initiates new small variations in his movements. The list could go on. We do try to celebrate these small changes… we don't know what the future holds, but we do our best to stay optimistic and give him as much help as we can.

I almost forgot, he is FINALLY getting in and out of sitting by himself! It took 3 years longer than a typical child... a movement babies learn so effortlessly... but after so much hard work, he can now do it! I absolutely love to walk in his room in the morning and find him sitting up in his crib.

We continue to strategize on the best approach. We spent a week in California at the Anat Baniel center in October (sitting up by himself came after that trip), we started Hippotherapy this fall (horse back riding), and had a procedure last week for a manipulation under anesthesia to release some compression on his lower spine.

We still struggle with differing opinions – whether to follow ABM versus the hard core traditional approach that we have grown not to believe is the best remedy and causes more problems down the road. But doctors and therapists continue to push their opinions and we struggle with the extreme differences on what is best. One doctor insists on Botox shots in his spastic muscles… others say it doesn’t work and the body ends up creating more nerve endings in that area to overcompensate, causing more spasticity when it wears off. One therapist recommends hard core equipment, and others say his back is not ready for it and it will harm him to be forced to stand now. Ugh… that list could go on and on. But we go with our gut, educate ourselves, and hope its right. For now…no Botox, no equipment… and we firmly believe this is best in this moment.

We were in the ER and admitted for three days in November that ended in surgery for his shunt. It was the sickest we've ever seen him because we (and the doctors) thought it was a virus for several days. As they waited for two days after they admitted him, he just got worse...he was catatonic and didn't speak for days. It was heartbreaking... but luckily as soon as we had the surgery to replace the shunt valve, he bounced back. We were also in the hospital on vacation for seizures in July which put him back on medication, but he had another cluster of seizures in October while we were in California for therapy. I sure hope 2011 is a hospital free year!

Ok… I’m recommitted to get these updates going again, since I now realize how many people have become disappointed in no postings. See more details in the monthly recaps in the past months (starting with May and Lucas as the Ambassador for the Montgomery County March for Babies). LOTS of pictures! No wonder I fell so far behind!

October Part 3 - Halloween

This costume is pretty appropriate, don't you think? We've always called him our Little Fighter!

Halloween was a little like the pumpkin patch... since we didn't have the other kids this year, we asked whether we should dress him up if he doesn't really understand. Again one of those things... most 2 or 3 year-olds can tell you what they want to be, and get excited about it. Lucas isn't there yet. But we decided in the spirit of Halloween, we had to. Ok, maybe a little of it was that Mom couldn't skip a year of seeing him dressed up.

"Should we even bother going trick or treating in the stroller?" we asked each other. Yes, we should try, even if he doesn't get into it... we need to engage him in this.

This ended up being another memorable night for the books. He may not have understood the whole candy aspect, but he completely got into the social part of the door opening and saying "trick or treat!" To the neighbors we knew that said hello to him, "trick or treat" was quickly followed by, "Hug?" Soooo cute! I loved that night.

Trying to get a full view of the costumeJust to show you he's not all smiles ALL the time... he's mad at me for making him stand

Happy again!

October Part 2 - Pumpkin Patch

We spent a day at Butlers Orchard with Lucas to take in the fall season and get pumpkins. This may sound silly, but it ended up being one of those days that will be one of the most memorable and cherished because it was finally something we got to do with Lucas that actually felt "normal." We always strive to do things as a normal family, but the hard truth is that Lucas doesn't engage or understand things like other kids his age. Then add in that he is not mobile, things like this just aren't meaningful to him. We do them for Nick, Abby, and Anna... but when it is just Lucas, we often don't go because he hasn't been able to enjoy it. Honestly, its been painful for me to see pictures of friends' two and three year olds running around at places like this... truly enjoying the activities.

This year we couldn't coordinate schedules to take the kids, so we were just going to skip it this year. I kept thinking, why put myself through the disappointment and watching the other kids from the sidelines. But after a lot of discussion, and back and forth, we finally said, "lets do it."

First was the pony rides... Lucas has been doing hippotherapy, right? He can do this! I was so excited to hold him on that pony as he concentrated really hard on balancing. Then we moved to playing in the corn... he loved it! For some reason, dumping and throwing corn is hysterical! In a perfect world, he would have been standing there like all the other kids, but we made it work as I held him up to the table. Bran and I kept smiling at each other as we watched him actually enjoy it. We continued through the activities... little slides, big slides, throwing straw, eating apple cider donuts (that Lucas loved)... fully taking in what it meant to us to see him having fun with these typical things.

So that should explain why there are so many pictures... it was just a good, good day.

Disclaimer: There aren't supposed to be so many pictures of me. Bran had the camera most of the time.

Little John Wayne

Playing in the corn

We even rode the tractor!

Going down the big slide with Daddy... he LOVED it!

Playing in the straw

One of my favorite pictures

Hayride to the pumpkin patch

Little punkin

October Part 1 - California-Anat Baniel; Dr. Roman & Endocronologist

On the plane and ready to go!

October was a very busy month, starting with a week in California to the Anat Baniel Center in San Francisco. For over a year we'd been wanting to schedule this, so we finally made the investment and took the plunge. We had 10 sessions scheduled (2x a day for 5 days)... 3 of the sessions were with Anat herself, and the others with the highest level practitioners. It was amazing watching them work with him, you can definitely see a difference in the approach of the various practitioners we work with, and how some are just able to get more results. When we saw Anat mid-week, she was very pleased with how he felt and the progress he made in her sessions. For the first time ever, we saw him arch his lower back while on all 4's, which is a critical movement for fluidity and crawling. She also did a lot of work with his left arm and his increased range of motion was clearly visible after the sessions.

Unfortunately we were only able to complete 8 of our 10 sessions because one was canceled due to the practitioner's child getting sick, and the other was canceled because Lucas woke up having a seizures. He ended up having a few in a row, called a "cluster," but luckily they stopped completely after about an hour. It was pretty scary being so far away from our doctors, and we didn't want to go to the ER if we could avoid it. I was able to reach our neurologist by phone and she said that clusters can happen but the important thing is that they stopped. Our neurologist also said that getting calls for seizures from families while out of town is a common occurrence... she made a joke that Disney calls come often! Children get exhausted from being off schedule, not sleeping well, etc., and it can bring on a seizure. Over stimulation and increased brain activity can also cause them. I think Lucas had the perfect storm... trouble with the time change and lack of sleep coupled with so much activity going on in his brain with the therapy (which is a good thing that the brain is active and making connections). This happened the morning after his intense session with Anat.

The week ended well though... we were able to get all of our sessions in with Anat, and left there with a renewed sense of hope that we could actually get Lucas to walk one day. It may be a longer road, but I have no doubt this is the best method for him to learn the proper building blocks of movement. We were also able to fit in a little sight seeing while in California... with a beach sunset, and a walk over the Golden Gate Bridge. After we returned, Lucas started propping on is left arm to play, and was finally able to get himself in and out of sitting with no assistance! If only we lived closer to the ABM center, I think we'd be a lot further along. I met a girl in the lobby one day with her 3 month old son who had moved there the day before from Kansas City, because she learned that Anat is the best in the world. After her son suffered a traumatic brain injury, her family decided to move there to give her son the best chance.

Upon returning from CA, we had a follow up appointment with Dr. Roman in Pittsburgh, PA. Its always good to see her and her positive vibes. She was thrilled with Lucas' progress over the past 9 months and increased him on her CVI scale from a 7 to an 8 or 9. She said it his progress over the past 18 months going from a 5 to an 8 or 9 is remarkable. She said this does not mean we can relax though... that this only means he is in a higher stage and we actually have to step up our work with him and the right stimulation he needs for learning. She wants us to work on getting him to recognize salient features (like a cat has triangle ears and whiskers, or Sally in the Cat in the Hat book always has a red bow in her hair). We know he's very good at memorizing an image but he relies on that too much. He needs to learn to "look" for certain features in an image or object in order to recognize what it is. Sounds like a simple concept, but it has been challenging for him, especially if it is a small detail for him to notice. We are diligently working on describing these things to him. She said this is the primary determinant on whether he will be able to differentiate between letters and eventually read. So... the pressure and the work is on. Again, I am SO grateful he is in a special school for the visually impaired, because they will be focusing on these things as well, in his daily activities.

Lucas impressed Dr. Roman with his ability to recognize more complex images this time and early stages of sorting. She challenged him with recognizing simple images (like a toothbrush on a sink), then moving it to a more complex picture with other images to see if he could still find the toothbrush. He got about half way through the exercise, then could no longer find the toothbrush because the images were too busy and distracting. So we still have a lot of work to do. She had him playing with an iPad during the appointment too... so cute. She raved about the number of great toddler games that he can play that will help him with his attention to finite details and hand/eye coordination. Or... was she just helping justify my desire to get an iPad? :-) Either way, it was really cute watching him play with it!

I have to comment about my conversation with Dr. Roman about the Anat Baniel Method. I told her about our recent trip to CA and how he'd improved over the last year in his fluidity and movement (which she noticed right away). She said there are several kids she sees with CVI that also do ABM and she recognizes that those particular children are all doing very well "overall". Since ABM focuses on the brain making new connections, it is helping the child holistically, in multiple areas. I absolutely believe it is contributing to his vision improvement, and she concurred.

Lastly, in October, we had our first visit with an Endocronologist at the National Institute of Health (NIH). We were referred by our pediatrician a few months ago because he felt Lucas wasn't gaining enough weight or increased height. It is common for brain injuries to damage the pituitary function within the brain. The doctor looked at Lucas' recent MRI, but since it was taken for the shunt, it didn't have the right view to see the pituitary. He said he may have one repeated (a specific endocrine MRI) in several months if he wants to take a closer look. Right now, he's choosing to wait and see how Lucas develops over the next six months. Lucas had bloodwork done at the pediatrician's office and the Endocronologist said he was comfortable with all the levels except for one... but that particular one is not enough for him to say he has this issue going on. He wants us to repeat a weight check in 3 months, and then 6 months... and he will decide at that time if we need to do extra blood tests and the MRI. He also wants us to see his nutritionist to count calories for a few weeks, but I believe calorie intake is not our issue. We've become old pros at pumping high calorie foods in him and he's a good eater... so I'm not sure what is going on. I pray it is not an endocrine issue and that hormone shots are not necessary, and that maybe it is just preemie related slow growth, or high metabolism like his parents both have. We go back in January for our next weight check and visit with the nutritionist.

Made it to San Francisco!

Strolling on a cold day in SausalitoWorking with Sylvia - all smiles, of course!

First visit with Anat

Look at that beautifully arched back!

Stinson Beach

Checking out the sunset with Daddy

Giggles running on the beach Stop for kisses

Took Lucas to the park - learned he not a fan of geese ("no more quack quack")

Posing by the koi pond at the hotel for a picture for Grandma

The Golden Gate BridgeAnd here's what Lucas thought of the bridge... zzzzzz

With Dr. Roman working on the iPad

September - School, Hippotherapy, & Ohio Visit

In September, Lucas went back to school, he wanted to give his teacher a hug and kiss upon arrival (we also did the extended school year, so Lucas also saw her during a month during the summer). He keeps asking for Oscar, Joselle, and Lucy... his favorite kids in the class from last year, but they have moved on to kindergarten. I miss seeing them when I drop him off! They brightened my day so much.

We started Hippotherapy with one of our PT's. Although he doesn't quite yet have the proper balance, he did great on the horse. Hippotherapy is supposed to be great for kids with CP, using the horse's movement to learn pelvic movements. She slowly introduced him to "Peppermint", and let him pet her. When she asked if he wanted to sit on her, he immediately answered, "yes." It brought tears to my eyes watching him sit up there like such a big boy.

We also traveled to Ohio to visit my family for a few days.

First day of school!

Giving Miss Christopher a kiss on the first day

Day two...check out his leg propped on the back of the seat

this is how he rides most of the time.Nicholas wanted to make sure he didn't fall over while playing

Meeting Peppermint

Catherine apologized that he had to wear a pink Dora helmet,

it was the only one small enough to fit him... still cute.In physical therapy with Carla
...how I pray he could stand like this on his own
Lucas got a new playmate, Keiran
We are sharing our nanny with a new family and he comes over a couple days a week
They are so cute and play really well together!

Nick getting Lucas situated in his car - he's always so patient with him

Playing together

Can you tell it was Alabama game day?

Taking a walk with the kids

New swing!

Visiting Grandma Barb & Grandpa Blain in OhioAnd cousin, JakeUncle Bryan, Aunt Lori, & Jake
...sneaking in for a picture while Lucas was crashed out