A Day to Celebrate

Today marks two years since Little Man came home after those long five months! I can’t believe it! This is the day that is the most important for me, the one that marks the true beginning for all of us (or the end of an extremely difficult chapter, however you want to look at it). This time of year heading into fall is already reminding me of that time in our lives. I’ve reflected a lot this weekend, replaying in my mind the events of that special day. I remember working that morning for a few hours to tie things up before maternity leave, running to Best Buy to buy the video camera we’d been looking at, running home to meet Bran, and then making the 40 minute drive that we did every day for 156 days to finally bring our boy home!! It was surreal and I was terrified… but it was the best day of my life. It was such an amazing feeling. It brings tears to my eyes thinking about it now, and I think it always will.

We arrived home to a big basket of flowers on our front step that Bran’s parents had delivered, with balloons floating above saying “Welcome Home!” I remember putting his car seat on the living room floor, with him tethered to the apnea monitor, thinking “now what?” As if it was yesterday, I remember sitting on our own couch for the first time, it was such a privilege. I just stared at him for hours, thrilled to have him home with us. I got no sleep that night, not because he was fussy, but because I was worried something would happen to him. I held him the entire night. I was never more happy to be sleep deprived the next day and to snuggle up for naps together.

So, here’s to another new chapter… and below are a few reminiscent pictures of the best day ever!

You have Taught Me
By Anne Maclellan

You have taught me patience to rejoice in small gains which others take for granted.

You have taught me tolerance to accept that your perspective is different and deserves respect.

You have taught me courage to fight for you when no one else will.

You have taught me endurance to go on when I feel I can't anymore.

You have taught me humility to accept when I can't make things better but can only be here for you.

You have taught me to love at a deeper level than I ever thought possible.

The first few minutes at home

We made it! The first morning

Vacation Pictures

Here's a few pictures from our trip to Alabama. To see the rest of the pictures, click to see the albums:

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Alabama (Aug 09)

Lake Norris (Jul 09)

Spending the day on GranDan's boat

"Hey cutie"

Lucas and his buddy, Arden

Swiming at Aunt Betty's

Don't let go of me Daddy! Hanging out on Uncle Jimmy's boat

Strolling around in his own boat

Eye Exam - Second Opinion

We had our appointment at Johns Hopkins Wilmer Eye Institute for a second opinion on Lucas’ eyes. I really liked both the doctor and his assistant that took a lot of time going through Lucas' background and watching his visual behavior. Even though I feel like our doctor at Children’s is very knowledgeable, I felt that the guys we met at Johns Hopkins go a step further in understanding the neurological aspects of his vision. That has always been the challenge with CVI and ophthalmologists… they are trained to work with the health and condition of the eyes, not the neurological aspects that are sometimes unknown (there’s just no standard answer as to how the brain will behave and is able to repair).


As suspected, he had a vastly different opinion from our other ophthalmologist which made me feel like we did the right thing in seeking out another opinion, but I didn’t expect it to be polar opposite. Our doctor at Children’s wants us patching two hours a day and wants to do eye muscle surgery right away on the left eye. (The reason for the 2nd opinion is that I don’t agree that it’s the left eye, I think it’s the right eye that is weaker. Lucas is obviously using both—but one at a time—so is patching the right thing?) The Johns Hopkins doctor said absolutely no patching… said it will either not help at all, or it will cause harm to the one you are taking away. He said the only way patching would help him is if we alternated and patched both eyes… but added that he wouldn’t advise spending the time to do, because even that may not help him.

He agreed with me on the dilemma of the right versus left… it isn’t clear that the left is the issue, and he is in fact using both eyes, back and forth. He gave me a little bit of hope that they may function together one day (that will be up to the brain repair, so who knows)…. The Children's doctor said definitively that the eyes would never work together.

Lucas’ issue is not only that he switches his eyes back and forth but that his pupils are too far apart (wall-eyes, aka strabismus, caused by a lack of coordation between the eyes). https://www.google.com/health/ref/graphic/1125 But seeing this depends on which eye he is using... if he's using the left eye, the other one floats, drops, or turns inward. When he's using the right, you can see that the eyes are turned outward. This is where we question “is it the right or the left that we need to repair?” The doctor is interested in seeing the latest MRI report so he can make a better assessment as to the reason for his behavior. He said it is common for kids that have a significant portion of the brain missing to have their eyes in this wide position. He said he sees it all the time with kids that have had part of their brain removed for seizures, and thinks this is why Lucas is appearing this way. He added that this is actually due to adapting to visual fields and how the brain has learned to accommodate.

Quick history on his visual fields… when Lucas finally started showing a visual response in early 2008, it started on the left side only. There was very little response to an object placed straight on, and absolutely no response on the right side. So, we played only to that side by offering objects on the left side to stimulate his vision. Eventually over several months, he was able to see things directly in front of him...the brain made new connections. Now today, he can finally recognize things on the right, meaning the right visual field is also improving, however, he definitely still prefers the left side because this field is much stronger (this is why you see so many pictures of his eyes looking to the left…this is where he can see best, and also the way he controls the nystagmus, the constant movement of his pupils back and forth. If he parks them to the left, the movement stops). Although the shaking is still present, it has also improved over time. This is why I hold out a lot of hope for things to keep improving on their own. *I should also note, the reason you don't usually see his pupils misaligned in pictures, is because I usually don't post these. For every picture we get with Lucas looking straight on or stable to the side, there are probably ten more pictures taken at the same time where his eyes are not aligned.

In summary, the doctor does NOT want to do surgery. He feels based on Lucas’ eye behavior, if we do it now, we’ll have to go back and repair it several more times. He also feels that if we adjust the muscle to bring one of the eyes inward, we could end up taking away some of his ability to see from that visual field. He said we may end up doing it at one point, in a few years, but its too soon to tell. Although there’s nothing more beautiful than when he's able to look at you with his eyes aligned for a few seconds and I'm eager for them to fix them, I am happy to be dodging a surgery for now.

Another encouraging thing that was very different than our other doctor’s assessment in regards to his optic nerve damage. We’ve known since the first eye appointment in the NICU that this primary nerve for visual transmission was damaged, and earlier this year we were told that it had been further damaged from all the fluid pressure that lingered for months in 2008 (with a very pessimistic outlook from that doctor). The Johns Hopkins doctor wasn’t concerned, he said the optic nerve can sustain quite a bit of damage and still produce functional eyesight. If its severed – then sight is lost and irrepairable. But he said Lucas’ damage is moderate, and that he's happy with where it is, its not so severe that it is a concern for him at this time.
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He also said he doesn’t see Lucas needing glasses in any capacity right now, that kids with CVI tend to be near sighted and that is working to Lucas’ advantage right now. That was good news, I guess I’m expecting Lucas to need them at some point… its one less thing to worry about for now.
All-in-all it was a very good appointment and I’m glad we went. He wants to see him again in six months, with an MRI report. I have to admit that I’m a little worried about doing nothing and that the opinions are so different, we ultimately want Lucas’ eyes to be straight… and I honestly don’t know which doctor has the right answer as it pertains to muscle surgery. But, we’re going to run with the Johns Hopkins opinion for now and wait six months. They really seemed to bring a broader understanding of the neurological reasons for his vision challenges. We also see Dr. Roman in Pittsburgh again in October, and very much looking forward to that.

Catching up on pictures... here are a few from my Brother and Sister-in-law in town a few weeks ago. He's such a ham, now when you tell him to smile for the camera, he does.

Little king on his throne

(at the new W Hotel overlooking the White House in DC, prior Hotel Washington) Lucas and Uncle Bryan

Aunt Lori & Uncle Bryan, and Cousin Jake

Two cuties

Back From Vacation

We’ve had another busy couple of weeks, but not quite the last of our summer travel. Although we’ve had a fun summer, I’m actually looking forward to returning to a routine and some normalcy! I know Lucas is too... although he travels well, he doesn't sleep or eat well when we are gone. My brother even commented while visiting a couple weeks ago, that he's a different kid when he's in his own environment... much more talkative and energetic.

We returned last night from a nice week in Alabama with the kids to visit Bran’s family. This time we got to spend a lot more time out on the water than in past visits, which was great! Lucas loves getting in the water. In addition to seeing family, long weeks like this are nice for the kids to get to spend together, the weekends go by so quickly and there never seems to be enough time. They always race into the house to see him, and are still constantly fighting over him. I can't tell you how many fights we break up over "but I asked to hold him first", or "stop it (insert name)... I was playing with him", or "Daaaad... (insert name) keeps blocking me out and won't let me play with him!" They’re not in the house one minute before one (or all three) are asking to hold him. The same thing happens first thing in the morning…its like a competition of who can get to him first. Aside from the fighting, its all very sweet that they want to be near him so much. I've said it before, but it becomes more apparent after a trip like this, they all have their unique sweet way with him… Abby is like a little mommy and now loves to put him to sleep (she told me this week if I ever have trouble again, just give her a call). Nick is awesome at playing with him and teaching him how to do things, giving him lots of kudos when he does something on his own. Anna loves to get him talking and encouraging his social side...go figure :-)… She is the first to tell people all the words he cans say. And she still loves to pick out his outfits or comment on anything that he's wearing, of course)!

The week before our Alabama trip, our nanny took her vacation, so my sister-in-law graciously agreed to fly up to DC to help watch Lucas during the work week. It was so helpful, especially since Bran was out of town the entire week for business. And we got double the value from having Aunt Lori watch him because she gave him a lot of work outs, and really pushed him to use his body to reach for things. Last week he started using his legs while on his back to scoot his body in order to get a toy (a very specific move the therapists have been working on in ABM since December...he's finally doing it!) Unfortunately he doesn’t get as much exercise as he should when we travel because he’s usually passed from lap to lap, so I’m glad he had a busy week that he really needed!

At the end of that week, my brother and nephew drove up to spend the weekend with us, so we enjoyed having all of them here and showing a little of DC. Plus its always better to get to spend one-on-one time.

His newest words… “Bye-bye” and “G’bye!” Sometimes “goodbye” has four syllables, with his voice going up and down. Sooooo cute in his little micro-voice. He’s also starting to say “mommy” (not mama, but mommy). Is that just the best for all moms when their babies get to this stage??

I was able to get a sound bite of him yesterday... not the long four-syllable version, but his basic "G'bye".

Also, here's a second one that makes us laugh. He was frustrated with me and Nicholas because I took his paci from him while we kept asking him to say goodbye to get it recorded. He'd comply, but he wanted his paci back! Frustrated "G'bye"

We’re progressing in the area of fine motor skills to manipulate small things (we’ve been working on this in OT, and another area we are very behind in). He’s finally figured out how to continue holding food and take small bites (he used to throw it down one second after biting it). He is learning to manipulate things with his fingers and starting to use the pincer grasp (on the right hand only). His Aunt Joanne gave him a big carrot yesterday and he held onto it for a long time… not for teething like before, but for 10 minutes, took tiny little bites from it… all by himself! He’d bite it and smile at you, so proud of himself! Sometimes he gets obsessed with taking bites though, today he tried to divide up a little Cheerio into three bites. Ha! It was very cute watching him try to eat it. May not seem like a big deal, but fine motor skills are going to be just as much of a challenge for Lucas as the gross motor skills. Seeing progress in his little fingers = Good!

So no health issues or doctor’s visits to report on… a nice feeling. There probably won’t be anything newsworthy until we see the new ophthalmologist next week.

Here's some pictures from two weeks ago at my Mom's in Ohio. Both sets of vacation pics are coming.

Sitting with Grandma at her pond

Look ma... no hands! Grandpa Blain let go and I'm still sitting!

Getting a closer look at the fish with Aunt Lori.

Everytime the big white one would swim back and forth, he'd tell it, "hi"... "hi"... "hi"

Feeding the fish Fish are funny!I love this serene picture

Lucas and my good friend, his "Aunt Jodi"

With Jodi and her kids, Parker & Madison

Jodi, Mommy, Lucas & Aunt Lori

Playing with Uncle Bryan & Lori... check me out sitting up again!

Playing with Madison, saying "Abby"

Jodi sent me this video... He usually says Abby much more clear than in this video, but he thinks Madi is pretty funny.