Predictions

I wanted so bad to make a prediction for this new year. I stopped short of coming right out and saying it so as not to jinx myself or especially Daniel.

I would love to be able to predict so many things for him. For the new year brings new hope that maybe this year he will walk, maybe this year he will talk, maybe this year we will know better how to care for our son.

In so many ways I have always thought of the new year as a new promise. A fresh start. Now we can wipe the slate clean and start over.

However, in Daniel's case I realize that it is a process and a continuation and in the new year we will see changes and improvement in all areas of growth, but that no one year will define his progress.

For Daniel and for all of us, it is the culmination of what has come before that sets the stage for what is to come.

2010 will be a good year, but it will be the same type of year with ups and downs, highs and lows, happiness and sadness, but most importantly a tremendous amount of love.

Running Dreams

I have dreams and I know that Jason does as well as everyone else in my family. I have dreams of Daniel running.

It's almost funny because even in my dreams I remind myself that Daniel can't even walk let alone run, but in my dreams he runs! He runs fast too. I always find myself explaining to whoever is there with me in the dream that he doesn't even walk! I tell them that he just runs but doesn't put it all together and realize that he can do both. It always seems to me to be so real and true and even second nature for him to run in my dream.

When I wake up I am often confused and have to remind myself of the reality of the situation. Often I can shrug it off and just move on, but there are some times when I just become very sad.

I just want one of my dreams to come true someday, just one.

Thanksgiving Day

I am thankful for so many things this year.

First, I am thankful for this Thanksgiving especially, because for the first time in a few years I am spending Thanksgiving with my family and we are all healthy!

Next, I am so thankful for my children who are both healthy and happy and simply wonderful!

I am also very thankful for my wonderful husband who, while being the very best husband a woman could ever ask for, he is the most wonderful and caring father my children or any child could ever have.

I am so thankful for my parents, they are just the best parents with their love, support, generosity and my children benefit from them every day.

I am thankful for my brother who, even though he lives far away, is still my very best friend and major supporter.

Finally, I am thankful for all the people in our lives: In-laws, extended family, close friends. Without all of you we would not be here.

In my heart of hearts I truly believe that it is the people you surround yourself with who get you through the day.

Happy Thanksgiving everyone!

Wheelchair Bound

Daniel is thoroughly enjoying school. He loves going on the bus and from the daily reports we get, it appears he is almost always smiling and having a great time at school. Really nothing more that a parent could ask for.

As for Daniel's mobility, well that is moving along (no pun intended). He still scoots around the house (very fast I may add) and he can stand with assistance. Yesterday in his daily report, we found a note asking us to set up a time to meet with the wheelchair vendor. This has struck a chord with me. It is not that we all don't believe that someday Daniel will walk, because we do. It is more that he is not walking now and the bigger he gets (and he is a big boy) the harder it is to move him and truthfully no stroller is big enough for him.

I realize all of this and if it were anyone else's child I would encourage those parents to make themselves and their child more comfortable. But it is not anyone else, it is us and it is Daniel. Jason--ever the positive one in this relationship reminded me that it is not a life sentence and that one day Daniel will walk. My biggest fear is that Daniel will think we are giving up on him. We are so not! The last thing we would ever do is give up on our boy. Our boy who will one day very soon be walking around and tearing the place up.

School days

Each day, Daniel's teacher sends home a note to let us know about his day. Today's note made me grin widely:

Daniel had a good day today. He has a sensory group with our therapists and worked on colors and fall leaves. He also visited the library. His favorite time today was by far enjoying lunch with his friends. He laughed and laughed as they shared looks. He also said POPCORN very clearly during lunch.

Shining Daniel

It has been busy to say the least. The kids have been in school and there are several activities at night as well.

Daniel is doing very well in school. We get a daily report that always mentions his smile or good nature and how much he enjoyed the day. He truly LOVES school.

His language has been growing every day. He is trying to talk more and more and is learning new words as well. Sometimes he babbles in what seems like a true sentence. He is also learning to chew better and has picked up a new habit of hitting (this is not really something we are proud of).

He is most definitely a 3 year old with his short attention span and his ability to throw a fit if he does not like something. This new behavior comes unexpectedly but just like any other child Daniel needs to be disciplined. This is difficult as we have not needed to do this before for him so he is not used to our stern and firm voices telling him that hitting is not OK.

This weekend we took Daniel to a carnival on campus geared toward children with disabilities. The program sponsoring the event is a program that provides community based adaptive PE to children and adults. It was interesting but very clear that it was not for Daniel. He cannot stand or walk and so all the activities that were offered were not appropriate for him.

Daniel has a long way to go. The director of the program asked us what our goals for Daniel were as his parents. I stated matter-of-fact, "isn't it obvious?" I want him to walk. More so, I want it all. I want him to do everything. Too much to ask?

Putting words together

My boy will turn 3 in a few days but still is nowhere near a normal toddler in terms of his vocabulary or language development. Not a problem, though. Daniel manages to get his message across with a few choice infantile utterances. "Bah-bah" for good-bye, for instance... "Car-car" for going in the car...

This past Saturday morning, I was loading up the van with a few bags and suitcases for a brief trip. As I was going in and out of the house, Danny watched me like he was following a tennis match. Back and forth, back and forth from the house to the driveway.

Suddenly, with all the effort he could muster, Daniel exclaimed, "Go... bah-bah!"

My heart melted.

Healthcare reform?

Give me a minute as I need to climb upon my personal soapbox. Oh good, there now here I go.

I had the pleasure of listening to one of President Barack Obama's town hall meetings on my satellite radio the other day. I love listening to this guy speak. He clearly makes sense and has nothing but the best intentions for this health care reform. But you know what they say about good intentions right?

Health care in this country has an affect on me in two ways. One as a health care provider and two as a consumer. For our purposes here, I am the consumer as is my entire family. Almost all of us in our small family have some underlying condition. It is quite obvious that Daniel has an underlying condition and that scares the SHIT out of me.

The president wants for every American to be able to obtain health care no matter if you have a job or a preexisting condition. This I believe is a great idea, in fact an idea that is way past its time. However, my concern seems to be a reality and that is that this "reform" bill that will someday go through the motions and become law will not look like what the president or any right minded individual had in mind. Why? Well, because there are several thousand lobbyists right now sitting down and getting their own interests and ideas into the bill. Then come fall, or whenever the congressional staff goes back to work, the bill that may or may not be passed will look so watered down that maybe if we are lucky, some families will have some benefit from it.

I am not under a spell of belief that Mr. Obama's reform will do a damn bit of difference for me or for my family. Nor at this point do I need to worry about that. For all our financial misfortunes over the years, we as a family have been fortunate enough to have good health care. Not the so called "Cadillac" plans but good--maybe more of a "Dodge" plan. And god willing we will be able to keep this up. However, should Jason lose his job or even one of us (god forbid) have a lengthy stay in the hospital then we are done--bankrupt and severely in debt. I suspect that is the truth for many Americans out there.

Or maybe Jason gets another job someday with different insurance and they look at Daniel with his underlying condition and deny him. What do we do then? Like I said, we have been lucky. We have had a majority of our health care bills taken care of and we have been able to not go into debt but I cannot see into the future and with all of Daniels specialists, who knows. Like many Americans I live in this fear everyday. I know that no country has perfect health care, including our country. We may think we do but we don't. How can we when there are literally millions of families and children without any health coverage? How can we when hardworking families can go into debt just by getting sick? In a perfect health care system, this wouldn't happen: http://www.thisamericanlife.org/Radio_Episode.aspx?episode=386

In his sister's words

I recently read a very touching and inspiring book about a mother who have given birth to twins at 23 gestation. She begged to have the doctors leave them be, knowing full well that they would either die or live with very bad complications. She was entirely right but how she dealt with it was entirely different from what she ever expected. If you would like to read it as well the name is "This Lovely Life".

The mother of the twins also has an older child too. She tries to find a way to explain to the then 3 year old about the events that have taken place. She buys her a book called "Views from Our Shoes: Growing up with a brother or sister with special needs".

I thought that this book might be good for Alison. For a long time I have tried to find something that could help Alison understand why her brother is different. She gets it at a certain level but (just like her mom and dad) there is a lot that I know she has questions about.

This particular book shares stories from children 4-13 who have a brother or sister with special needs. There is a lot in the book that goes way over her head and would go over a lot of adults' heads as well. The idea is for her to be able to identify with others who are going through similar family dynamics, and to broaden her vocabulary to encourage her to talk about how she feels about her brother. Alison was so inspired by some of the stories in this book that she decided to write her own:

Alison Sokoloff, 6

My name is Alison Sokoloff. My baby brother is Danny. My brother has special needs. Sometimes my brother gets into trouble. One time my brother grind his teeth. At first I laughed but then I got mad. My brother is still little. I love my brother.

Alison likes to ride her bike, get the mail and play basketball and almost got in the net.

Lucky Stars

Daniel's last day of summer school was today and by all accounts he had a great time! He thoroughly enjoyed school and even loved riding on the bus. He came home some days with paint somewhere on his body, but every day with a smile on his face. It was a delight to see.

Today, for the last day of summer school, there was a Luau (even though it rained). Daniel and his classmates sat on the cafeteria floor in their swimsuits and swim trunks and listened to music. I got a chance to see some of Daniel's classmates and the family members as well.

Some of Daniel's classmates are clearly in need of more care then Daniel. Some require wheelchairs, tube feedings and oxygen. Through it all though, the parents/caregivers are smiling, happy and take it all in stride. I look at them and wonder if I could do that. Could I take care of a child with such special needs?

To me, Daniel is a far cry from these children as far as his needs are concerned. Daniel does not need oxygen or to be fed from a tube and he is not in a wheelchair. But I do understand how these parents do it. I can totally see myself looking at any one of those children if they were mine and saying "at least he/she is not..." I get that. I get that each and every thing is looked upon as lucky it isn't worse. Because, yes it could be far far worse. And even though those other children appear to be worse off than Daniel, they are all really lucky.

Daniel's teacher told me that there would be a new 4th grader attending school in the fall. He had a motor vehicle crash in March. I looked this up online and this little boy was flown from his vehicle onto the interstate. No seat belt. This boy--very lucky.

Done Differently

Jason won a trip to visit Pixar studios in Emmeryville, CA a while back.

While this was very exciting, we were at first very cautious in admitting to the prize. It meant two full nights away from our children.

We were mostly concerned about Daniel.

It is very easy to let Alison stay with her grandma and papa but Daniel had never done this before nor had grandma and papa watched both kids overnight and for more than one night. We had our concerns.

None of it had to do with my parents capability, it was our own hangups that made us hesitate.

So, Jason took a plunge and asked the travel agent who would be booking the trip if we could bring the kids along too. They said yes.

Then we thought, 'well how often do we get a free flight for all four of us to the West Coast, let's make it our vacation.'

The prospect of a real family vacation excited us. We were hesitant but asked about the idea of extending the trip to a full week. They said yes.

We thought they said yes and they were going to pay for the whole week. However, reading the fine print we found out we were wrong. So, knowing that we could never afford the hotel room in San Fran for the remainder of the week, we looked into visiting family that live in Oregon and Washington.

We made plans, albeit very unmanageable plans to drive up (taking nearly 2 days) and visit a cousin of mine, an uncle of Jason's and my brother and sister-in-law. Then we were going to fly back from Seattle in the early morning of our original flight home date and catch the flight from San Fran to Wash/DC and then drive the 2.5 hours home that night.

It started to feel less and less like a relaxing vacation and we both just couldn't fathom having to lug all our stuff, two kids and ourselves all the way across the country and not stay put.

We looked for ways to make it better. We had tremendous monetary help from both my parents and brother for the added flight and an added stay at a hotel midway on our drive up the coast. Also, there was the expense of a rental car and the added cost of dropping it off at a different airport. Or we could fly up to Seattle from San Fran, again costing an arm and a leg. But the main part that we couldn't get past was the thought of all the traveling and the traveling with children.

So, less than one week before our planned "vacation," we called it off and let down ourselves, our family and our friends.

Last night I asked Jason if we would have done it differently if Daniel was not disabled. He said the answer I was thinking-yes. We would have. We would have just done the trip as is, the two of us going away for two nights and left the kids with my parents. If Daniel could walk and talk as any other normal 2 and a half year old can, we would have felt more comfortable with leaving them for two nights. He would have understood what we were doing had we explained it to him.

It has also been bugging me, would we have done it differently--what we had planned--if Daniel wasn't disabled? Would we have felt more at ease with doing our trip as planned with the driving and the flying? Maybe, I cannot say for sure. I am pretty sure that traveling with two kids ages 6 and 2.5 would be difficult no matter what. I know that traveling with just one child on a plane is difficult and not even across the country so I don't believe that it would be any easier despite him not being disabled but what if?

My biggest fear is that I let Daniel down. I fear I did not give him enough credit nor did I give Alison or my parents enough credit. I did not have faith. Faith that we could leave Daniel and both kids with their grandparents for two nights, faith that had we gone through with it that our kids could have handled it with all the grace that comes with traveling that long. Faith that I myself could have dealt with it despite my own anxiety about flying. I let them all down and for that I own everyone a huge apology but to Daniel I owe more, I owe him my confidence.

Standing up for himself

Daniel has been movin and shakin for the past few weeks now and it is so fun and exciting to see. He out grew his high chair and with the continued generosity of grandma and papa he got a brand new chair that will grow with him. This chair allows him to sit at the table with us and eat.

However, this has become a bit difficult with his reaching for everything in sight. We have had to make sure the path is clear before we set him at the table. And you can see from the series of pictures below, that there is something else we need to contend with:

Trouble

It has been busy around here for the last few days especially. Daniel is becoming a typical two year old and this has been both exciting and dangerous.

Daniel, for a long time, really didn't find much interest in exploring the world around him. He would be perfectly fine sitting still and sort of "playing" with things that were presented to him. But no more!

Daniel is now a very inquisitive toddler, wanting to go wherever you are and see whatever it is you are doing. He is finding out that the kitchen is a pretty cool place with one particular cabinet that has different bottles of interesting looking fluid. Another fun place is in the hall upstairs very close to the stairs going down! Even more interesting is in the playroom where he can almost pull an entire shelving unit upon himself! Or maybe the best part is in the laundry room? Really all of it is just great fun for him and for us too.

Even though this has come upon us being fully unprepared, it is very exciting to have this little 2 year old in our house. It has been a while (not since Alison was two) that we've had to keep a diligent eye on a child's exploration. Yes, we need to invest in some child proofing but really I don't care about that right now. All I care about is that my little boy is becoming Trouble with a capital "T" and that is just alright with me.

Mother Calling

I have read on other blogs and in some articles, where mothers of special needs children have a much more difficult job. That for some reason we are stronger than a mother of a "normal" child. I have both and I tend to disagree.

I think that any mother is a mother of a "special needs" child. What child out there doesn't have "special needs?"

In today's world, there is so much that a child needs to survive that any mother who can guide her child though it with very little harm done, is a good mother.

When I was pregnant with Alison, the Iraq war started. I remember thinking that it was going to be very difficult to raise her in this world today. She has so many obstacles to overcome. Daniel does too but in a way, hers are even more dangerous because I cannot predict them. With Daniel, I sorta know what is ahead of me. He has his needs and delays and I know what we need to do to tackle them. For Alison, her needs are not so transparent. Her difficulties lie in the day to day navigation of this world which some days, I can't even navigate. I don't know how to shield her, protect her, guide her through and I haven't yet met one mother who really does.

Special needs or not, it is all a hard part of motherhood. For my children to be successful in life (and I don't mean make a lot of money or be famous), for any child to be successful, they must have a mother who is loving, and caring unconditionally. That is the task of any mother. That is the task of every mother.

Daniel's classroom

Today, Lara and I visited the elementary-school classroom where Daniel will attend summer camp for a few weeks and, in the fall, be enrolled as a preschooler.

While I had anticipated feeling uneasy about the visit, I actually became very excited by what I saw. We sat in on circle time, where the teacher led the class in songs and reading and used lots of visual aids -- really not much different from what we've observed in Alison's preschool classrooms.

What was different, of course, were the kids. Some had mobility issues, some behavioral or communicative. But there was no mistaking that these children were happy, responsive and having a great time. I immediately visualized my boy alongside his classmates, pointing to pictures, talking to the teacher, trying his sign language and "rocking out." (See 'Daniel dances' post.)

While I fully expect him to be apprehensive at first, I know that before long Daniel will be having a great time in his new class. And I am confident that he will excel from being in this new and wonderful environment.

Truth, Reality

I know in my heart of hearts that it is unfair to compare Daniel to other children his age. However, when faced this past weekend with two little boys slightly younger than Daniel-walking, talking perfectly normal little boys, I cannot help but to compare.

I still go back to the why of it all. Why Daniel? I cannot make sense of it, and I don't think that I ever will.

I love Daniel with all my being but the reality is that that love will never change his differences. I wish it could. I wish that someone could just love someone so much that all of that person's difficulties would go away because I can't move mountains, I can't change it and I can't control it either and that is what bothers me the most.

The other day I visited Daniel's soon to be special ed classroom. It was a truly surreal situation for me. Here I saw children that seemed to me to be far worse than Daniel, but in reality, some were very much like him. I fully expected someone official to come walking in to the classroom and tell me that a mistake had been made and that my son actually belonged in the regular classroom, but that was just a wish on my part.

I know full well that Daniel will do great in this class. I know he will love it and that it will be the best thing for him but in truth I still wish it weren't so.

Daniel dances to 'Banana'

The fact that he can't stand up doesn't stop Daniel from grooving to a reggae beat. We came upon this song, "Banana," on our new favorite TV show, Yo Gabba Gabba. I think everyone should watch it, whether or not you have young kids.

My two favorite moments:

• 1:11 -- Danny stops to acknowledge me with a point of the finger, saying "Da-da."
  
• 1:50 -- Daniel does sign language for banana.

By the way, if you're interested in dancing along, here's the "Banana" video.

Lost

I have tried to explain this to Jason without much success and maybe it is something that can never be explained, I don't know.

I have struggled with dealing and thinking of Daniel's condition since before we even knew it had any sort of a name.

I love my son. I love him and his sister more than anything. My life is complete with my family and Daniel is a wonderful little boy. The best, I wouldn't trade him for anything ever!

But there is a feeling I have, a certain sense of loss. It is almost like a person died but someone I never even met. I don't know if this is normal, but it is how I feel. Because of this I am lost.

After learning of his "first" diagnosis, I felt like I was drifting through life temporarily. Like any life-changing event I felt surreal as though I was an observer and not a participator. I don't feel that way anymore, but I still don't feel normal. It is almost like I left that life before and it is never the same. It is not better or worse, just not the same. I am still angry, still sad and still left with many many questions.

Jason and I are different when it comes to this particular point. I need answers. I see things in black and white and always have. He, on the other hand, is able to look beyond and deal with what is and not with abstract of what could be. We compliment each other this way but is one right and the other wrong? How do I move on?

Who the hell knows

I heard back from the great doctor out in Chicago today, and I will post his summary below in a minute. First though I would like to just update this blog (it has been a while) to describe how Daniel is doing.

Daniel still does not crawl or walk however, he is quite mobile. He sort of scoots on his butt to wherever he wants to go. While he still doesn't say many words he does know plenty of signs and is learning more of those every day. He is the same happy wonderfully sweet little boy that he has always been. He is becoming a typical 2 year old in some ways which is good and some not so good (for his mother and father). For instance he will not necessarily listen when you say "no" and he does not like to wait for something when he wants it, he wants it now! He also has a tendency to explore everything :-).

We love him dearly and we are so happy that he is in our life and in our family.

Now, onto the doctors summary:

Lara --

The medical records (and video) of Daniel indicate significant developmental problems, and the video shows poorly coordinated movements and stereotyped postures and movements. His face appears mildly flat with prominent cheeks also. The only head size measurement I found in the records was at the 25% when he was younger; more head size measurements would be useful.

His medical records do mention “mild” lissencephaly as you indicated. On my review, his brain scan shows mildly increased fluid over the front, which makes the convolutions appear a bit unusual. But he probably has a normal number of convolutions, so he does not have any type of lissencephaly. This diagnosis was way off base, and I doubt that any of his current physicians will argue with me about this.

His cerebellum, primarily the middle portion known as the “vermis”, is mildly small. While mild, this is definitely abnormal. It very likely accounts for his poor coordination, and partly accounts for his other unusual positions and movements. The reason he is not talking or chewing is less clear. I designate this as “cerebellar vermis hypoplasia” (CVH). An older but very confusing term is the “Dandy-Walker variant”. While concerning of course, had he had almost any type of (true) lissencephaly, he would have been worse.

CVH is a relatively common developmental problem, and occurs by itself and as part of many different syndromes. It probably has many different genetic causes, and the developmental outcome varies across a wide spectrum very nearly normal to severely handicapped. The video shows significant abnormalities in his verbal and motor skills, so is likely to continue having developmental problems when older. Some causes of CVH come out of the blue (only one in the family) while others can affect siblings. I’m not sure for your family.

He should have a good “chromosome microarray” test done. And genetic testing of the “OPHN1” gene, which can be done in our clinical lab in Chicago. His neurology and genetics docs in VA are welcome to email for other ideas. We could include him in our CVH research studies as well. You might try to email me the video, as it was helpful. I think he should probably see a geneticist in VA as well to work on diagnosis further, and I know good ones in Norfolk, Richmond and the DC area. And please track down his head growth curve.

REVIEW. MRI 5/23/2007 at 9 mo on CD shows normal extraaxial space, borderline mild frontal simplified gyral pattern (reduced number of convolutions) but o/w normal gyral pattern, cortex, hippocampus, basal ganglia, thalamus, white matter, 3rd and lateral ventricles and corpus callosum, persistent cavum septi pellucidi et vergae (minor variant), normal brainstem and cerebellar hemispheres, mild but definite cerebellar vermis hypoplasia involving all lobes, and normal posterior fossa size. wbd

Testing included normal transferrin isoforms fjor CDG and, 15q11 methylation studies.

WBDobyns

Sibling No-Rivalry

Daniel and his big sister Alison seem to have the most love between a brother and sister. There really exists no sibling rivalry. Largely due in part because Daniel is not a real threat to Alison. Given the fact that he still does not crawl or walk and mostly still observes her playing (though that is quickly changing). He hasn't challenged her and taken toys from her. Which is good and which is not so good. She is quick to take toys from him, but he has not yet gotten to the point of noticing that and pitching a fit about that--yet. She also, doesn't get to experience a baby brother.

I took Alison to gymnastics today and we were early. She saw a girl sitting down at one corner and asked if she could sit next to her. The girl was playing a game with her baby brother, who is 2, where he was running between her at one end and their mother at the other end. Alison really liked this and got into hanging around with this girl and her little brother. At one point she was helping him at the water fountain.

Alison asks questions about Daniel's therapy and can draw pictures of him getting therapy but I wonder how much at this age is really understood about her brother. Daniel is her brother, that is what she knows and that is her reality. Deep down though does she realize that it is totally unfair that he is not running around and chasing her like that little boy was doing to his big sister in gymnastics?

Hey Kids, What Time Is It?

For the past few months, we have been introducing Daniel and ourselves to a new form of communication. We got a sampling of videos from one of his previous therapists and since then we have collected a few of our own.

These videos called Signing Times are extraordinary in helping Daniel communicate. He has learned so many signs and uses some to communicate his needs. Alison has also become very proficient at signing as well and will sometimes be his sign language interpreter. One of the things I love about the videos is that it makes learning sign language extremely easy and fun and Daniel just loves it. Not only that but it is just so encouraging to see him pick it up so quickly.

I love that he knows so many signs and can use them appropriately. It makes me realize once again that for all his delays, he still is a very smart little boy who just takes longer to do things.

Him and his sister-gosh, they will rule the world in their own way someday.

New Year, New Questions

A "New Year" to me used to mean promises and hope and new beginning. Did I say used to? I got over that a while ago. Realizing quickly that really the new year was just a change in calendar and what happened the day before was still there the next day even though it was a new year.

Toward the end of last year we finally sent out Daniel's MRI to Dr. Dobyns in Chicago. Dr. Dobyns is a professor and also a researcher on Lissencephaly. He was the guy that we were told over a year ago when we first got the diagnosis that we should contact and ever since his name has come up as the one to contact for further diagnosis. The problem is that to get any sort of recognition from him you have to "donate" $150 towards his research otherwise you will hear back from him typically in about 2+ years. Well, considering the fact that we are in need of an economic stimulus package, we didn't have $150.00 lying around that wasn't designated to something else say food for the kids. Luckily, my parents (Grandma and Papa) generously gave us the money and we sent out the MRI. We heard back from the great doctor in record time even with the holidays and new year and everything, but what we heard makes me want to throw up, makes me want to yell and scream and puts me right back to where I was at the beginning of this blog.

Before I post what he told us I want to explain first why I sent Daniel's MRI to him in the first place. I had no belief that this doctor would end all of Daniel's issues or that this nightmare would be over after the mailbox door was shut. I thought in no way that there would be magic pixie dust sprinkled on the MRI CD. My only wish for sending the MRI along was really to get some further answers. I wanted this doctor to (as he does for a living) further classify Daniel's Lissencephaly so that it could be noted and registered and tucked away somewhere so that someday in the future 5, 10, 15 years from now they will call and say we found the cure, the pill, the antidote..."we are very glad we found you thanks to this documentation, and knowing your precise diagnosis that matches what our treatment cures." Too much to ask, I don't think so? Now, you can see why I go back to the beginning with more questions then answers:

"Best to collect and send some medical summaries, including detailed head growth charts. His brain scan was done at 9 months, an age when it can be difficult to see some details of brain structure based on rapidly changing maturation.

The pattern of convolutions is either normal or perhaps slightly immature for age, but I do not see any type of lissencephaly. A new scan now would probably sort this out. He does have a small cerebellum, particularly the middle portion which is designated “cerebellar vermis hypoplasia” (CVH). My lab works on this group of conditions as well. CVH is associated with a large number of different developmental disorders, some with very good development and others not.

What have you been told, and who are his docs? And where in VA? This is more complicated than just looking at his scan. Where has his head size been tracking?"

WBDobyns