Reality check-up

Several years ago, Lara sought out and reached out to the authority on brain malformations like Daniel's. In exchange for our token contribution to his research funding, Dr. William Dobyns reviewed Daniel's brain imaging back then and provided us with a diagnosis: cerebellar vermis hypoplasia. At the time, Dobyns was practicing and researching in Chicago. Today, Dobyns is in Seattle, and so are we. And this week, Dobyns and his team met Daniel face-to-face.

The hard facts:

• Daniel will almost certainly never walk independently. At nearly 7 years old, Daniel's trunk will not develop any further. No amount of physical therapy will alter this outlook, but we will continue to work with a physical therapist to get Daniel more comfortable with his walker.
• Daniel will almost certainly not be able to live independently when he is an adult. For example, it is likely that he will never be able to have a job. Through continued physical and occupational therapy, we strive for whatever level of self-sufficiency seems realistic.
• There will come a time when Lara and I are not able to take care of Daniel. A group home will likely be in his future. We are not currently financially prepared for such events but are hopeful that we still have sufficient time to begin appropriate planning.

What's good:

• Daniel social and language skills are still developing, and we are hopeful that continued speech therapy and special education will only bolster this progress.
• Genetic research is growing by leaps and bounds every year. Dobyns now has Daniel's DNA sample, which could be made available for any possible clinical trial that may emerge.
• Lara and I also both provided DNA samples (spit) to determine any genetic causes. This analysis won't help Daniel, but it could be useful for Alison to know down the road.

Ten Fingers, Ten Toes and it's off to the Neurologist we go...

One of the many reasons we made the difficult decision to move all the way across the country was that we knew that a certain neurologist worked at Seattle Children's Hospital. This neurologist is the only neurologist in the country (world maybe?) who is studying the role of genetics in brain abnormalities like the one that Daniel has. In fact, this neurologist is the one that (after having a bad experience with the neurologist at UVA) first diagnosed Daniel with Cerebral Vermis Hypoplasia (CVH). All he did was look at Daniel's MRI.

At the time he was working in Chicago and we just figured we would never meet him in person. We were wrong--never say never. In less than two weeks we will finally go see him!

I am not sure why I am so nervous, hopeful, excited about seeing this particular neurologist. In general, a neurologist is not the one who helps Daniel every day of his life. In fact, not since his first year have we dealt with a neurologist of any kind, knowing that Daniel will only improve with the physical therapy, occupational therapy, speech therapy and special education teachers. A neurologist knows what is happening in the brain, but cannot perform the tasks of helping the brain to grow. And yet knowing all of this I still have hope and faith in the neurologist and hope that he will give us more than we've ever gotten from a neurologist before.

Because he is the man. He is the one who is leading the research on what Daniel has. He is the one who may someday (in the near future?) have the answers that we all long to have. The reasons why and the ways to make it better.

Am I putting too much faith in this one guy? Sure. Do I have every right to want this person to be a miracle worker? You bet!

The other night in the bed, Daniel and I were hanging out. He is very much into counting to ten these days and very proud of himself when he does, "Great job!" He won't actually count things though, he just counts. I was trying to get him to count his toes and it reminded me of when he was born. Just like when his sister was born, I counted to make sure he had all ten fingers and all ten toes. Thinking that as long as he did, then everything was okay. Yeah, life is not that simple.

There's no way out of here

We moved! Across the country! It was a bit hairy but we all got here in one piece and we are slowly settling in. The first several days were difficult because Daniel did not want to sleep in his new room. We think it was because he has slept in hotel rooms with all of us for ten days, anyone would be confused by that. We managed to try to make the trip interesting, though we were also trying to get out here in a good amount of time too.

The most difficult part of the entire move for me has been Daniel's reaction. Because of his developmental delays he does not and has not been able to fully understand the whole idea of moving. He would keep asking to "go home" when we were stopping every night in a new hotel, and we tried but couldn't explain to him that we were moving to a new home. It almost felt as though we were taking him from his home and never returning him. I felt so bad. What was even worse was coming here and not having him sleep. He would cry bloody murder in his room as though we were torturing him. We didn't know what to do, and being exhausted ourselves we did not respond well to him getting out of his bed and also to each other. I felt alone and kept thinking about how our lives would never change and how Daniel would never learn. I keep thinking of a particular song that reminds me of our situation by David Gilmour:

There's no way out of here
When you come in
You're in for good
There was no promise made
The part you played
The chance you took
There are no boundaries set
The time and yet
You waste it still
So it slips through your hands
Like grains of sand
You watch it go
There's no time to be lost
You'll pay the cost
So get it right
There's no way out of here
When you come in
You're in for good
There never was there an answer
There an answer
Not without listening
Without seeing
There are no answers here
When you look out
You don't see in
There was no promise made
The part you played
The chance you took
There's no way out of here
When you come in
You're in for good
There never was there an answer
There an answer
Not without listening
Without seeing
There's no way out of here
When you come in
You're in for good
There was no promise made
The part you played
The chance you took
There's no way out of here
When you come in
You're in for good
There's no way out of here
When you come in
You're in for good
There are no answers here
When you look out
You don't see in
There's no way out of here
When you come in
You're in for good

Travel Woes

We are gearing up for our BIG trip! The biggest one ever! We are going across country! Since we are moving to Washington state and we live in Virginia, we will be traveling across the country. This will be an adventure for sure. Especially with two kids in tow. While we intend to try to visit some interesting sites along the way (Mount Rushmore and Yellowstone), it will still be a lot of driving.  Daniel has not been such a good passenger lately. When we are out for too long or out late at night he gets very upset and almost has a fit in a way. He is so overtired or just wants to be home. It is really very sad, he cries and cries and asks for Pickles-the-cat.

We will also be staying in a lot of hotels along the way which he is not fond of since we all sleep in the same room and either Jason or I need to sleep with him. He cannot fall asleep as well and also has difficulty sleeping well. Thus so do we. It also affects Alison because when he cannot fall asleep then she cannot. It makes for a bad night and something I, for one, am not looking forward to. I mean, I know we will have fun along the way but then I just worry, worry about the nights, the sleepless nights. Then worry about the days after that. It is difficult sometimes. We really want to take Daniel everywhere but then it is very difficult to also take them everywhere and not be sad about what could have been, what vacations would be like.

By George I've Got It...Now What Do I Do With It??

It was a moment of epiphany.

Okay, maybe just a moment of clarity.

I am awake at this hour (4:30am) after watching Frontline. They had a story about Newtown, CT. Need I say more? In it, though they delved deep into the shooter's life and focused a while on his special needs issues. In one segment they discuss his diagnosis of Sensory Processing Disorder.

Ding Ding! I woke up my brain a bit.

I think we've mentioned on here before but Daniel hits and kicks. He doesn't do this to be mean and really it is out of his personality of a sweet sweet boy. We've been trying hard to try to help him understand that this is not behavior that we allow. Daniel does have Sensory issues, but now I realize that the hitting and kicking are a part of that!!! I know now that we were right all along--Daniel is sweet and not at all trying to be mean! YES!

Okay though...How the hell do we help him now??

Strange Things Are Happening

I think of that song from Toy Story when I think about what is going on with Daniel. He has been doing a lot more these past few weeks/months. At school he is using his hands more and more to touch and feel things that he would never have touched before due to his sensitivity. His verbal skills continue to improve each day as he learns to combine new words into sentences that actually make very good sense. The biggest change however is his strength in his legs. Over the winter break he actually climbed the stairs in our house by putting his hands on the step above and then bringing one leg up then the other leg up. Then yesterday, I got and email from his physical therapist:

"Daniel WALKED up 11 steps today at school twice! He held the railing with his right hand and my hand with his left. He did a step to gait pattern (each feet touch each step) for all but one step which he stepped through! All of this was done with minimal assistance from me. It was awesome and he was very proud! He also bumped down the flight between the two trials. We sat at the top and I had my arm wrapped around his back and one of his hands in my hands. I'd say 1, 2, 3, bump and he would slide his feet out and lower to the next step. Then I'd say, my turn and I would bump. He did all 11 steps. On the 7th step he said 1, 2, 3, bump and did it without me AND he did the last 3 steps without stopping. So sorry I didn't have the camera but I had to share!


Please know that he is still worried so he tries to sit as soon as you get to the top step....he needs to be moved to a safe place to catch his breath and receive claps and hugs."

It is starting like this in these instances that are here and there but becoming closer. I know it and can feel it in my bones that one day very soon we will be letting the world know that Daniel walked on his own. We are so proud of our little man and all he has accomplished. He just keeps chugging along and continues to inspire us all!

Where do we go from here

Being a mom of a special needs child, it is very difficult not to look at what you are missing out on. We are a normal family from the outside. Mother, Father, Daughter, Son. Mother and Father both work outside the home. We come home, make dinner, get the kids ready for bed, clean dinner dishes, put kids to bed and then soon after we fall asleep ourselves. We have a daughter who does before and after school activities. We both have meetings at work and sometimes work late or have to travel for our work or other professional interests. We save most of our family chores for the weekend when we have days off that we can devote to all the things we missed during the week...food shopping, laundry, cleaning, yard work and sometimes we have time left over for something fun.

What are those choices? We can take our daughter to a movie if one of us stays home with Daniel since he doesn't really like loud noises and would probably talk during the movie (we don't really know since we've never taken him). We can take the kids to the playground and there is a nearby special needs playground nearby that both kids love. This proves to be a nice hour to hour and a half excursion if it is a nice day--not too hot and not too cold. The children's museum is indoors but our daughter has outgrown it and for the most part Daniel is not interested.

Having Alison first spoiled us in many ways--she had/has such an imagination and was/is able to play for hours on end with just a stick and a rock. Daniel has never really been into toys until more recently but not as much. We can see him play for maybe a half hour tops but then it always comes back to TV.

Yes, the dreaded television. Daniel has become so into television and it is part our fault as well because what do you do with a boy who does not like toys much and who doesn't walk or play with other peers on the weekend? Where do we go from here? We are stuck. We have a rut so to speak. What do we do? We are not in a position to spend much money so going places that require a lot of money is not really an option. We want to get out, be active, do more with our kids but how? With Daniel how? We need help. We need something to save us from the spiral that we are going down.