Roll call for

[Guest guest]

It's been a while since I updated on , and we've had some new stuff

going on that to me has been very exciting, so I thought I'd share.

had an MRI shortly after his first birthday, just to clarify his

diagnosis. and I had went to our neurologist appointment steeled for

grim news, but the MRI suprised us all, including the neuro, in a mostly good

way. What he found was that does have PMG rather than Liss -- a point

that was in question. But, the PMG only affects the back of his brain--that

is the motor strip, while the rest of his brain is intact and appears normal.

His microcephaly is a result of basically missing the back half his

brain--one doctor said the back of his brain was a shell about 10% of normal

size.

also has a malformed/damaged basal ganglia (sort of a central

processing area of the brain that controls balance and movement--it's the

area of the brain that is diseased in Parkinsons). The basal ganglia piece

explains a lot of 's super-high tone and rigidity, which so far has

been something of an enigma.

The thing that absolutely threw us is that our doctors suggest that 's

congnitive abilities are normal, or very close to normal, but that his motor

abilities are and always will be profoundly limited. On the one hand, we are

thrilled to think that has a lot more potential than we had come to

expect (and accept), and on the other, we realize how challenging it will be

to have a child whose mind works well, who is very aware of all that goes on

(and what people are saying,) but has almost no control over his body and

most likely will not be verbal.

can not roll or sit, he does not hold toys, though he can hit a

switch to activate his toys or appliances. He has decent head control, but

we can't even set him down on a mat or the floor or he goes into extensions

and gets rigid, then starts refluxing and vomiting. He can't lie on his

tummy either. Positioning him is a non-stop effort. We put him in his

sitter, his stander, his long-sitter, his sleeping wedge. We hold him a lot

too. There is no way he could sit in a normal stroller. Car seats are a

torture device to him. I'd love to find a swing for him, but we have yet to

find one with enough support.

We switched from Valium to Baclofan for tone management. Looking back,

I wish we had not used valium--it did help tone but it also reduced his

alertness and made him a bit spacey--probably contributing to the assesments

that ranked him with profound cognitive delay. Baclofan is working pretty

well, but it has the unwelcome side effect of constipation. We treat the

constipation with miralax, but with miralax you need increased water intake,

and the water, or maybe its the constipation, well, something-- increases

refluxing. And the more he refluxes, the more skin breakdown and irritation

he has around his neck. It's all a balancing act.

got glasses this last month. Everyone predicted that he would hate

them and that it would be a chore to get him to wear them, but he actually

loves them. When we first put them on, he got very still and quiet (his norm

is a lot of extensions and arching, tongue thrusting, etc.) and he just

looked around with amazement. Now he objects when we take them off. With

glasses he has more interest in books, the computer screen, and looking out

the window.

We had our IEP and I came away a happy mom--though is going to be one

busy kid this fall. We have 3 hours of home visit or pool PT per week, 1

hour home based OT, 2 hours of class time (which his twin can go to

also as the typically developing model) half an hour of vision therapy, and

Speech therapy, still to be evaluated, but I want at least an hour per week.

Our other big thing we're working on is power mobility for . His PT

wants him in a power wheel chair by the time he's 18 months (I'll settle for

2 years). The two big problems are insurance--is anyone suprised that they

don't want to pay for one? And size-- a real challenge since he only weighs

15 pounds. I don't mind fighting the insurance battle; I'd even give myself

pretty good odds on winning that one (eventually) but I can't do much about

my tiny boy's size--he's already getting tons of calories (g-tube).

One of the tough things this last month has been walking and starting

to talk. While of course I'm thrilled that is fine and doing all the

things a 15 month old does, it's very painful to see alongside him. I

suppose I still feel a shadow of the expected, normal, really identical twins

I was supposed to have, and then there is reality, which is so different. I

can be all excited and upbeat about how well has mastered his new

switch toy, or how he actually grasped a mylar ribbon for 3 seconds, and

then I'm faced with and the normal world. And for a minute or two I

will feel such sorrow that I don't have two babies just like . But now

it's only minutes, or even seconds of sadness-- most of the time I can be

thankful for each of the boys as the wonderful individual that he is.

The other tough thing has been how my husband and I are at odds yet again in

how we feel about things. I am thrilled that has less severe brain

damage than we were originally told, that he . My husband, however, actually

took some comfort in the original prognosis --that would not live

long, that he would never understand that he was " different " , that he would

have very little awareness of the world outside his family. So to him, the

new picture of the future is difficult and negative, while I see it as a huge

challenge, almost a battle, but one that can be a wonderful and meaningful

focus for our whole family. This difference in our views is stressful, and

it results in ridiculous situations. My husband is an electrical engineer.

I was an English major. But I am the one who goes to Radio Shack and buys

stuff to adapt switch toys for . I have newspaper spread out over the

dining room table and the soldering iron out, and I'm trying to read this

electronics diagram (probably upside down) and making a total mess out of it,

but 's not going to do it any time soon.

Can you tell I'm somewhat resentful? My next door neighbor has actually done

more g-tube feedings on than my husband has. It's not like it's hard

or that much of a burden. If were a respite care worker, I would have

fired him many an unchanged poopy diaper ago. To be fair to , he is a

great dad--to my other three boys. And I know he does care about . It

just seems like he had decided that he was willing to love daniel for a brief

life , and when the doctors switched to telling us that could live

close to a normal life span, then he shut down and is unwilling to

re-negotiate a relationship with . I feel so much aggravation with my

husband, but I try to remind myself that he was calm and stable in the first

year, while I was going through my grieving process, and so now he should be

entitled to some time to deal with this as he needs to. If I were convined

that he was dealing with it, or if I had a clue as to what he is thinking and

feeling, that might be a good thing. I beleive we are in serious need of

some couple time, but realistically that's not forthcoming any time soon.

, mom of boys:

6

4

and born 4/12/2000