Friday, April 17, 2009

Long Time No See/Write

Hello there.

I have been very remiss in my writing. My bad. Sometimes it is hard to write when I can't pull all the edges of my world together to make sense so that I can think and write. So, I duck my head under the comforter and only pop out when necessary.

I think I am pulling the edges together enough to try to explain.

When we went to Boston Children's I thought we would leave feeling so confident in our Kath. That appointment would show that my all-night worry fests were unfounded and I could just chill.

Instead the neurologist said things that spun my head around, flipped my heart into my throat and made me feel as though my past year was just a practice run for a harder, more intense second year. . . life.

When he told us Kath would eventually need a heavy Educational Plan (lots of help and probably aides). That she might never go to college. That she would probably start having seizures. I felt . . .lost and terribly alone.

That was a long drive home from Boston.

The next week when we saw our local neurologist I felt relieved somewhat but he said that although he would never limit her, Kath would probably need the help, possibly have the seizures and so on. Even now as I write this, my stomach is twisting.

Then I sat and stewed with this. Putting on 'the face' that of course our daughter was going to beat all odds. And if she wanted to be a BRAIN SURGEON-then darn it that is what she will be. Even though I heard from one son who was trying to help me deal say, "Mom. No one is ever going to let her do surgery on them."

It's just the idea. It's the idea that this beautiful girl should be able to do and be whatever she wants. I shouldn't have to carry Diastat in my bag so if she has a seizure--I have the medicine to stop it before she causes damage to--excuse me FURTHER damage --to her brain. She shouldn't have to work on telling her limbs to obey her since they often behave as if they don't actually belong to her. She shouldn't have to struggle EVERYTIME to say "moo' for a cow when it is obvious she knows it, but her brain won't let her mouth do what it needs to.

Gee, aren't you all glad I am writing again? Believe me--this is lighter than if I had written a month ago.

This past week, during our break from school, we saw the Developmental Pediatrician. This was our first meeting. I hardly slept the night before. "Here we go again, I thought." He had two doctors-in-training with him.

Kath does not always like to do/play when she is told. She is two. She is also her father's daughter (ever try to get Roger's attention when he is thinking about something else??)When her mind is focused she will not allow you to shift her and if you push her, she pushes back--physically and loudly. So, after Dr Malone sat and spoke to us, he sat to play with her. She didn't want any of that. She didn't want to stack blocks (she can do that). She didn't want to show him things in pictures (things she knows). But she allowed him to play with the Little People (gave them names and tasks) and when I sat on the chair and held her, she pulled herself together and pointed to pictures and kinda/sorta answered his questions. I thought for sure she 'failed' the test and I started to just tell myself that I KNEW she knew things and I would just block him and whatever he said out.

To my surprise he said that her Quality of Performance showed deliberate task orientation and that she was on task for a 2 and a half year-old. That she showed Exploration, that she worked on tasks even when difficult (really??? he said it was age appropriate. :-)).

On Emotional Stability he said that he saw that she was able to 'hold it together' when she was so obviously stressed by a task or by him. He didn't think it bad that she leaned on me to find her comfort spot frm which she was able to then reach out to do what she needed.

On Actual Achievement the things she is doing is on task with her age.

Her Verbal Understanding is on target. He believes her speech will be good since her understanding is so obviously high, even though it will probably take a few years.

Her Motor Skills seem good--he trusts that the therapies and such are keeping her on task and target and expects that in a couple of years we will be looking at her motor skills differently and more in a life structure setting appropriate to our recreation as opposed to specific therapies. So horse riding, yoga, swimming and so on.

He said that what he saw was more strengths than weaknesses.

When I asked him what he would suggest for her for next year (we have a meeting soon with the school district since she will transition out of Early Intervention and into the School District because she turns 3 in November. We will need to decide how to best meet her needs-- a program at a school for special needs kids or a home program -continuing therapy at home. You can probably guess I do not want her to go to a program-I would rather work with her myself, hold her when she is having a melt down and laugh with her when things are good, not send her away at 3 years-old for the day). He said that he is of the mindset that if something is not broken, then you don't mess with it. He said that I had good instincts and what we have been doing is proving to be very successful with her. He said he has other kids who have what she has and they are not doing as well. So he agreed with me about keeping her therapies at home and signing her up in a regular toddler program (at Alex's pre-k school). We still need to meet with the school and all of Kath's therapists before the final decision is made, but it made me feel like I was . . not so lost. That I could trust what I thought and felt in regards to Kath and what she needs.

That's pretty big. To feel more confident.

However, he did say that though she is on task now, when school begins and it starts to progress quickly, that she may fall behind then . . . (stomach tightened, but I like the part about more strengths . . .)

The EEG that we had scheduled for Tuesday--the sleep-deprived EEG- was canceled Monday night, so we will have to reschedule since the day it was rescheduled for is one of my work days and I can't miss anymore school. (I am a mentor and I have to miss days for that in the next few weeks.)

So, now for some good anecdotal stories. Kath has been introduced at least twice to roller skates by Sue (Physical Therapist). Each time, all Kath has to do is SEE them, and she freaks. Well, the Easter Bunny gave her roller skates. She thought it was a baby-it was in plastic zippered carry case bag like some dolls in the store. When she realized what it was, she looked at me with a look that said, "Are you KIDDING??" She put them down and didn't touch them again . . .until a couple of hours later when she sat on the floor and tried to put them on by herself. I helped her and she walked around with them for at least 1/2 at a time. Outside it still tough--but rug skating is a go.

Easter. For Easter we missed having Nick home, he was unable to get the time off. But we were fortunate to have Chris. We were also fortunate to have his girlfriend Abbi and his friend Sean. We had egg coloring on Saturday and all 5 kids were very into it. :-)Kath worked with the metal egg dipper some and also just reached in and grabbed the eggs. Then the E. Bunny hid the eggs and they all (31 eggs) needed to be found the next day. The Bunny puts initials on the eggs so if you find an egg that is not yours, you must put it back, discreetly, and move on. Kath was the first one to find all of hers. Alex was thrilled with the whole game, she came in second (she 'helped Kath'). Easter is her favorite holiday, though I think the No-Nick may have dampened her enthusiasm some. Alex wore her skates for hours. And did well outside too.

There are other stories but I am wearing out.

Please continue to keep Donna and Hope in your prayers since Hope keeps getting illnesses she should not be allowed to get while trying to heal--PLE which is a protein losing illness=not good. Strep-even with a second round of antibiotics she continues to hold onto it. Prayers for miracles are welcomed.

Hope you are all well. I will try to update pictures soon--but that means you will have to actually go to the blog page and not just read this email reminder that there is a new post.

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