One Awesome Day!

On Wed, 10/23, we took the trip to Pittsburgh to see Dr. Roman, the CVI (Cortical Vision Impairment) Specialist. What a positive and uplifting day! The last time we saw her was in January and it was great then, but this visit was even better!

The first thing she said to Lucas was "are you going to give me one of those raspberries?" Ha. She remembered this about him, as back in January he was deep in the throws of giving raspberries to everyone he met, followed by cracking up. He gave her a bunch of smiles and several "hi's" right away and immediately engaged socially with her. When I commented on her remembering the raspberry, she said "oh yes, there's something special about this boy... I remember him well and Al and I have talked about him many times since you were here" (her husband, the head of the NICU at West Penn Hospital). She said, "some kids stand out to me, and he's one of them." She talked with him casually for a few minutes as she watched his visual responses, then turned to me and said "I can see a huge difference already... I can't wait to see where he tests."

Needless to say, Bran and I were very proud watching him respond to all of her tests, and to watch her excitement with his progress. I loved watching her check things off her list that he can now see, that he didn't respond to in January. She was looking at things like his ability to find objects against different complex backgrounds, light preferences, how he reacts and to looking at two dimensional pictures (remember, kids with CVI have trouble seeing things that are busy with patterns and colors, and difficulty processing images... they often turn away or shut down if it is too much). He's just now starting to glimpse at pictures in books, but right now they are still a little too much for him and (so there are certain techniques we will start using to help him build up this ability). We are going to be working a lot with special books and are supposed to take pictures of his favorite toys and objects that he recognizes around the house (taken against a black background). Dr. Roman is personally going to make him a special book that will start helping his brain process very simple images and correlate them to the real thing.

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The last time Lucas was tested on her CVI scale, he was a "5" on the scale of 10. This time... a 7.5! This officially puts him into "Stage 3" (the final phase of visual improvement on her scale). She said this was a huge jump, and that this last phase is a very important and critical one to prepare him for literacy. She said there are a lot of tasks that she will help us with over the course of the next few years in this phase. She emphasized that we CANNOT wait for these things to just "come in" for Lucas as they do for typical children. We must intervene and enforce these skills (or they will probably never appear). She commented on how happy she was to see him making eye contact (something that just started a few months ago), and felt that it would continue to improve. She was thrilled at his social interaction, his newly found interest in his image in the mirror and people's faces (something CVI kids really struggle with). We're on our way!!

We talked a lot about our pending decision to enroll him into the preschool class for the visually impaired. She gave us a number of things to think about and to ask the preschool. Overall she was very supportive of it ONLY IF the classroom has a mix of children with CVI (because CVI challenges that are brain related and the improvement path is vastly different than how you might help a child with issues related to the eyes). She said as long as the teacher is educated in this field, and has a mix of students, then it could be a very positive thing for him. But, if it is not directly related to CVI and activities specifically for his condition, it could hinder his progress by not challenging him in the right areas. She even offered to do a conference call with the teacher to help make sure we are making the right decision, which we thought was very gracious.

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The biggest point she made that day was that cognitively, she feels he's right on the mark! Wow, what an amazing thing to hear. She went on and on about how impressed she was with his receptive language and how much she could tell he understood... and that receptive language is the true sign of intelligence. She said "I don't care how beautiful a child can build a stack of blocks... its the child that can understand what you are saying at an early age that shows their IQ and potential." **She said something similar in January about him, but this time was even more emphatic and I quote her, "I'm blown away at how much I have said today that he understands." Then add that he understands an equal amount in Spanish! She asked us to video tape Mirna interacting with him in Spanish and him answering her, she really wants to see it. Disclaimer: I'm not saying he is so unusual, as there are many kids that pick up two languages at this age... its just so beyond the predictions and expectations we've been given for him.

She told us that we need to be very careful not to let his motor challenges and his medical history of the brain bleed put him into a "box" with schooling that won't challenge him cognitively. She said it will be very easy for them to go down a checklist of his history and automatically place him in a class with children that do not have as much potential, and therefore he will not be pushed. I goes right along with some of the challenges we've had these past two years with doctors and therapists. They read his history and automatically want to write him off, that he "won't do (fill in the blank)." She kept emphasizing that he is very bright, and we need to make decisions on his school carefully so that he is challenged. It puts a little more pressure on how we make these decisions, but it is good to know she sees so much potential. She even brought up a concept that I've honestly put out of my mind completely... she said "he's going to be in regular kindergarten, and you shouldn't accept anything less." What?!?! Could that be possible? I had kind of written that off in my quest for "acceptance" of his situation. Bran and I both left her office that day in tears...happy tears. I'm not getting my hopes up too much, but its always important to have a little bit of hope... its the only thing that has gotten me through the past 2 1/2 years.

So with regular school being brought up, we discussed reading in the future, and she feels that his vision will continue to improve and acted as if it wasn't going to be an issue (something else I thought he'd never be able to do "normally"). She said there are special techniques that she will advise us on later that varies from the traditional method of letter-to-letter.

We discussed his strabismus and how he shifts his vision from eye to eye, using one at a time. It was wonderful to get her perspective, as we've had two ophthamologists giving very different opinions on how to address it (surgery or not, will it correct on its own, etc.) Remember -- Ophthamologists are trained on the health of the eye, CVI is neurological, and often they do not have a full understanding of the workings of the brain as it relates to vision. This is why having Dr. Roman on our "team" is so awesome. Well... she put the dispute between the eye doctors to bed, and now I don't feel in limbo anymore. Basically, the binocular thing is never going to correct... we cannot expect him to ever use his eyes together. Once a child reaches a certain age and patterns in the brain related to this function have been established, it is very unlikely that it will change for him. BUT... that's ok!! He can have perfectly functional vision without them being binocular. Sure, there may be some challenges for him that we'll need to work on and things that he'll need to adapt to over time, but it can be completely functional. For example, when people with this condition read, the left eye will start, then in the middle of the page the eyes shift and the right takes over to complete the sentence... sometimes the person can lost for a second. Or, he may have trouble seeing ball thrown directly in the middle of line of site... the ball will appear lost in space for a few seconds, as the eyes figure out which one to use. The reason she knew this... is Dr. Roman HERSELF has never had binocular vision! Since her childhood, her eyes worked back and forth, just like Lucas's. She had them surgically corrected in 3rd grade for cosmetic reasons, but she still functions with them shifting back and forth today (and you would never be able to tell this by looking at her). So instead of stressing that because Lucas's vision shifts and it being a bad thing, its ok. His brain will just adapt to this, and there is nothing we can do to force him to use them together. Surgery is just cosmetic, it will not help his vision in any way, and as the last doctor told us, if we correct too soon... it could take away some of his good visual field. She agreed 100% with our "second opinion" ophthamologist at Johns Hopkins, and also mentioned she has a lot of patients that see this particular doctor (said he has a great reputation with CVI). I am sure we'll be correct his eyes surgically for cosmetic reasons, but not for a few years after the brain has had more time to make connections. Putting all of that to rest was worth the drive to Pittsburgh in itself! I've been really torn wondering which ophthamologist's opinion we were supposed to be following and if we were hurting him by not having the surgery now (we've even contemplated getting a 3rd opinion to try and settle the difference. Alas, one thing I can put aside for now... and just try to exercise patience as we watch the miraculous brain do its job.

When we left her office, she personally walked us down the hallway to the elevator... she gave Lucas a kiss on the forehead, and hugged me goodbye. Bran got a handshake, but the kiss and hug... how many doctors do you know that do that?!? I hope that paints a picture of what a special person she is.

That was a lot of information! And I'm probably forgetting some things! It was just a good, good day... a much needed dose of positive energy and hope (especially when things have been difficult with his motor progress lately). I keep thinking about what she said about his cognitive abilities and school... we've thought for awhile that he seems bright and learns things quickly, but its great to hear it from someone so well respected. And she is talking about our little boy who is missing 20% of his brain, right?? Amazing! Have I mentioned lately how proud we are of him?

Here's some Halloween pictures of our little elephant. Although don't let the smiles fool you... he wasn't this happy to be in a hot costume...with this thing over his head... past his bedtime! He's yelling in all the other pictures! :0)

Roll Tide!

Trying to get a full view of his costume

All the kids... Abby's an eskimo, Nick is a zombie skater, and Anna is Sharpai from HS Musical (she's missing her big pink glasses) Ready to go, Daddy!

Adorable picture with GranTrick or Treat
Enjoying a lollipop the next day... check out that sitting!!

Trip to Ohio

"Beep Beep!" A friend at my office gave this car to Lucas a few weeks ago because her kids outgrew it. He thinks its pretty cool!

Lucas and I flew to Ohio for the weekend to see my Grandmother before she heads to Florida for the winter. It was a very quick trip and we crammed in a lot of visits, but worth it! Here are a few pictures from that weekend...

Hanging out with Grandpa Don and Great-Grandma Treva

Cracking Up at Grandpa

Getting some sugar from Grandma Rose
Parker jumping to make him laugh... he still thinks this is hysterical

Lucas being the entertainer for Rose, Jodi, Parker, Madison and Bryanna

Lucas and my beautiful niece, Ashley

Acceptance

We're still here! Before I start, how cute is this picture in the swing?!? I LOVE it! He is saying "yeah!" The best part of it... his left arm is UP and his left hand is open. This is not something he could have done several months ago. This is HUGE!

I think this is the longest I've gone between updates - I just put a few updates up for September. I really don't have a good excuse other than pure procrastination. I've had trouble getting into the "zone" to sit down and write after a long day. Truth be told, I've been in a bit of a funk lately and have had several down days where its been difficult to write from a positive perspective, or to have the energy to express my emotion. Lots of good things are happening with Lucas, don't get me wrong... but there are some days when what we are dealing with is just simply... overwhelming.

I feel like I've been in a bit of denial, not wanting to admit some of the things we are facing. Its a difficult position to be in because I am trying to be as positive as possible for Lucas and we celebrate every little change that he makes, but I can't escape the reality of his condition. I've honestly been thinking that if we provide enough therapy and if I can just get him to "catch up," that we can forever escape the label of being disabled. I've had a particuarly hard time lately seeing other children pass him and do things so effortlessly... because now they are not just passing him anymore, they are lapping him. Some days I'm so optimistic, but other days I'm scared to death for his future.

"If it looks like a duck, walks like a duck, and sounds like a duck... its probably a duck." That phrase keeps coming to my mind lately. My son has Cerebral Palsy. There, I said it. I haven't wanted to admit it, and certainly have never said it proudly like I have heard from other mothers in similar CP situations. This is in part because I don't ever want to label him, and the other is because I just plain hate it. I don't want it to be true! I want to go back in time, keep him safe, not have him be born early and live a life with so many challenges.

Yes, his vision is getting better every day... and I thank God for that. And he is getting stronger every day and his little voice and words lift me more than I can explain... I am so grateful for that too. I know that we've come a long way! I love the fact that he can see our cat walk into the room and excitedly says "de-de!" every time. Two years ago I never would have predicted it. But at the same time... I recognize how far his vision is from "normal", that although he is able to see objects and recognize faces, it may never be enough for him to read, walk, or judge depth and distance. I know that people notice and don't understand his nystagmus, his pupils moving back and forth is not something you typically see. I was asked point blank on the plane the other day, "how's his vision?" So I get it. Even though I hardly notice it, I know others see it.

His head is often tilted over because he sees stronger from one side and his torso doesn't have an even amount strength on both sides of his chest (causing him to compromise by tilting his head). His hamstrings and his left arm spastically tighten up whenever he tries to do anything, which keeps him from moving and progressing to the next level, or sitting in certain positions. The progress is so painfully slow. We're working on it and we will continue giving him every ounce of therapy that we can afford, but some days I question if it ever be enough?? The guilt I feel of not doing enough is sometimes insurmountable.

So I've explained how I've been feeling for the past several weeks, let me tell you about my day this past Friday. On the way back from his therapy, we stopped at Babies R Us. Lucas was sitting in the front of the cart and the sales clerk started talking to him, asked how old he was, etc. I gave my standard answer of "He's 2 1/2 but he was born really early so he's small for his age." I always feel like I have to say something like this because he looks about a year old. Its easier to just give that disclaimer rather than dealing with the strange look or comments that usually follow. So, that was the only thing I said. She then said, "I worked with handicapped children for 7 years, I just love 'em".... as she turned back to talk to him again. She was referencing HIM! She then said in a sad voice, "my cousin has a son with cerebral palsy"... in a "oh pity the poor soul" kind of voice. I couldn't believe it, I guess she was trying to identify with me, but it was not something I was ready for. I didn't say he was handicapped (nor would I ever use that word at this point). I didn't say a word about his challenges or therapies. She made this assessment just from the way he looked. I remember thinking, did this really just happen?

In my mind, he is perfect. I know that he may not look like other children, but its another thing to have someone blatantly point it out and label him "handicapped". He's also been through SO MUCH more than other children! More than all the adults that I know! I wanted to scream this at her. He's not strong yet, but he will be, he is working so hard!! I got out to the car and completely lost it, it was like all of my fears and denial about his condition hit me in the face. I could barely get it out when I called Bran because I was crying so hard. I know this shouldn't have bothered me so much, she didn't say anything cruel, but it was the first time I really ever had to hear this word (while someone was referencing my son). I kept thinking, is this the beginning of him having to deal with people looking at him or labeling him because they feel he is different?

The positive side of this story is that I am trying to come around to acceptance of this thing called CP in our lives... and to not be afraid of it. It does not mean anything, its just a label for an enormous spectrum, and I truly believe we escaped things being much worse. I believe he will overcome this. The irony of the comment that made me melt down, is that several days before that happened, I ordered a few books on CP thinking that I needed to admit it and get more educated about it. A day after that incident, the books arrived. I truly believe that things hurt when we have not arrived at some kind of "acceptance." Think about it, many things that hurt are things we just don't want to be true. There have been times in this journey that I've had to give up on certain dreams and accept and embrace what we have been given. As soon as I have been able to get to a level of acceptance, the pain dimnishes. I know I have a long way to go as the tears still come often and the pangs of jealousy when seeing other children will always be there, but I'm trying. It is what it is, and Lucas will get there on his own time, or maybe he won't get there at all... and that has to be ok too.

A fellow preemie mom posted this quote last week on Facebook and it really hit home with me, her timing was amazing. I know that Lucas is exactly who he is supposed to be, he has already changed so much in me, and all the people that he has touched. I know for a fact that he is my teacher.

"For all we have been through, there is so little I know for certain except for maybe this: Motherhood is about raising--and celebrating--the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be."

Ok, enough emotional stuff... we're all good and we're on the right track, just an emotional several weeks that I thought I'd share (and the reason for my writer's block)! I am so grateful for the blessing that he is to all of us - he truly is the light of our lives. He has a way with making your heart melt with his infectious smile and sweet little voice, the highlight of my day is the minute I see him in his crib in the morning or walk into a room and hear "Hiiiiii!"... usually followed by "UP!" There's never a waiting room where Lucas doesn't draw in every single person in there, saying "hi" to every person and making them smile. He has a certain "something" in his personality and demeanor that I just can't describe. You just have to know him.

A few weeks ago I posted a video on the right side of this blog... the lyrics in "I Just Call You Mine" make me think of Lucas every time I hear it and how he has enriched our lives. The video has a lot of couple stuff, but the lyrics fit life with my little hero. "Everyone that sees you, always wants to know you. And everyone that knows you always has a smile. ...Everyone calls you amazing. I just call you mine." Lyrics

Here are a few cute pictures from a few weeks ago of Abby playing in the grass with Lucas.