Wait and See

We took Daniel to the eye doctor again today for a follow-up.

It was a shorter visit this time which was nice.

Daniel was very excited as usual to go in the car and take a trip. He just likes to get out of the house and I really don't think that he cares where he goes. Daniel is such a great little traveler.

The doctor was following up for a bit of a strabismus problem that we had noticed way back when. We actually noticed it less recently, but still there. Alison has a form of strabismus as well with her amblyopia. Daniels form is where his eye deviates out. It is called extropia. Apparently this only happens when Daniel is looking at something far away. It does not happen when he is looking at something close up, which is good.

The bad news is that as Daniel gets older, he will be wanting to look at things farther away (like the T.V.) and so it is possible that the deviation will get worse.

We will need to keep an eye on the situation (no pun intended), but eventually Daniel may very well need surgery to correct the eye muscle.

I asked the doctor whether this was due to his lissencephaly and he said that he could not make a direct correlation with it but that he does see this in a lot of developmentally delayed children.

I on the other hand have no problem what so ever in blaming lissencephaly.

Stupid, PIA lissencephaly.

Nine Month Old Water Baby

Daniel has been going to pool therapy for the past few weeks. In the bathtub Daniel is very happy and kicks and laughs and splashes everywhere and so we thought it best to get him into the pool and have it work for him. He is very hesitant at first but when he gets into his comfort zone it is like he transforms into a little fish. He is calm and relaxed at times and very "free" to move both his arms and his legs. Simply adorable. He even laughs his great belly laugh while splashing his mommy in the face. In the pool Daniel is able to do something he can't do as easily out of the pool, he is able to be independent. For a brief moment in time he is his own person and in his body and fully capable of moving it his way. I love the pool.

Daniel has been evaluated by the early intervention people again (this is standard every 6 months I think). It's just a bunch of paper work really but all the therapists come together and assess the progress that he is making (and he is making a LOT of progress) and they scale it to see what age range he is into for cognitive, social, motor etc. Well our Danny boy is in the 9 month range BUT with many areas he is expanding towards the 12 to 15 month range! He is really doing great. Every day he does something he didn't do the day before. It is great to see and hear. Some examples are: he waves and says "bye-bye," He stays on his hands and knees and rocks back and forth for quite a while, he rolls purposefully to get to something he wants. All really wonderful to see. Honestly, I don't know what he is going to do next but really I cannot wait to find out.

Amendment

In my last blog post, I mentioned where I hated that F'n family. I know that a few people (my husband included) thought that I was referring to the Rummel-Hudson family and that is not true. I was intending to refer to the family of diseases that plagues both Daniel and Schuylar.

I hope that makes sense to everybody now.

A Review, Of Sorts

I am not very good at reviewing things.

Normally, I don't have a very good objective outlook for things. I will either love something or hate it. I am not even very good when it comes to rating something on a scale of 1 to 5 or 10, I will usually pick the middle just to play it safe.

I don't know why it is really. Maybe I was just raised to not be that critical (though I do an excellent job of being critical of myself).

I wanted to discuss the book that I just finished reading. Maybe you have seen it. Maybe you have heard about it, and if you read this blog with any regularity then you know who the author is and some of what it is about. The book is Schuyler's Monster: A Father's Journey with His Wordless Daughter. The book stems from the blog that Mr. Rummel-Hudson started long before his daughter was born (long before there were blogs) and then continued to update all through his daughters struggle and diagnosis. Schuyler (Pronounced Skyler) has polymicrogyra which is not what Daniel has exactly but it is in the same family.

For the record I hate that fucking family. Every last one of the motherfuckers. They live all over the world and affect little children everywhere and I really would like to just kill off the whole clan.

But I digress.

I read the book and I liked it. Of course only in the way you can like something that is about exactly what you are going through and about sheer depression and disappointment. It was very well written and for the most part in the end it is a feel good book. Obviously it is not the end. Schuyler is still very much alive and thriving and so that is a positive like no other. I read it and as I was reading I immediately identified with the parents and their struggle. I also felt very strong that Jason should not read the book and I told him just that.

He was not very pleased with this. He wanted to know why and I told him--I didn't think that he had a good grasp of Daniel's disease. Of course (and this has NEVER happened before) I was wrong. I couldn't have been more wrong about that. Jason knows exactly what is wrong with Daniel and what may happen and what his life might be like, but Jason and I deal differently with things (always have) and while I openly fret/worry/disable at the thought of something bad, Jason doesn't go there. He genuinely takes every day one day at a time and doesn't go far into the future. I for one cannot imagine doing that but he does and thank god for that. I also thought that Jason might not be able to handle the book because Schuyler's dad talks a lot about god and his lack of belief in god after her diagnosis was found out. Though now that I read it I think Jason might actually get a good outlook from the book.

Who else would I recommend the book to? No one. Not that it is not a good book and well written but I think to go ahead and recommend it would not be in good taste. I will say this, it is far better than anything I could've written and if you are interested in reading more about the struggle of this family, this courageous little girl and what it all means then you should check it out.

I think each child in their own right has a story that needs telling. Some have others tell it for them and some go right on telling it for themselves. I know Daniel in his young life so far has his own story to tell but I fully expect that some day he will tell it.

Daniel is a lover and a dreamer and I suspect that when he gets older that he will turn to the written word to express himself and his own struggle with this disease. And let me tell you, when that happens I will rate it a 10 out of 10 and recommend it to everyone!

Baby spin doctor

Daniel talks a lot of baby talk: mama, dada, lala (we think, Alison). Just the other day, however, out of his mouth very clearly came: "Obama."

There you have it. Daniel has made his endorsement. And in case you were wondering, Ralph Nader entering the race doesn't seem to affect Daniel's position.

18 Months

Hard to believe that Daniel is 18 months old. Even harder to believe is that his sister will be 5 in just a little over a month! Where in the world does the time go? I cannot remember back to when they were so little and that time just keeps slipping away.

Tonight I looked at Daniel and saw a reflection of a little boy staring back at me. He is becoming quite the little "devil." He wants to grab anything and everything these days. He gets a little grin on his face that says, "I know that this is probably not a good idea but I want to do it anyway." I have actually had to say no to him--when he grabs my face it really hurts so I gently say no. He doesn't realize or doesn't care. He is growing so fast. They both are.

We went to Roanoke last week to see a new neurologist. While I realize that no neurologist is going to tell us what will happen in the future, at least this one was nice and spent time explaining just exactly what is wrong with Daniel, and put it in terms that we can understand: Computer terms!

He told us to think of Daniel's brain like a computer. A part of the computer is out of commission but you can still rewire the computer to get it to perform some of the tasks that the other part was doing. This rewiring though may slow the task down a bit and it will take longer to learn. Sometimes the task will not work either. Only time will tell--with Daniel, not the computer.

Coming from a family where the brother is a computer genius I could relate and actually felt confident that things were going to be better. Though honestly, I really would like to call tech support and just ask them to fix the damn thing already!

On the move

We've been reporting for a while now that Daniel enjoys rolling around on the floor, since he hasn't quite figured out crawling. He rolls from back-to-front to back-to-front to get where he wants to go.

Where Daniel has been wanting to go lately is his sister's lap ... or stomach, shoulders, whatever part he can grab. Daniel is clearly through with observing Alison's play; he's ready to join in the fun. It's pretty remarkable to see Daniel be sitting beside Alison on the floor and then, moments later, lunge for her with his arms outstretched. He seems to want to wrestle her.

Alison laughs when Daniel does this, but I can tell that she's slightly put off. Ever since Daniel has been paying attention to Alison, it's always been about her "putting on a show" for him. All of a sudden, her brother is bugging her! Can sibling rivalry be far behind?

(One last, related comment: Though Daniel doesn't crawl, he seems to be on the verge of figuring it out. He tries very hard to scoot forward when he's on his stomach. And If we set him up on his hands and knees, he can hold his balance pretty well for more than a few seconds.)