Friday, November 20, 2009

So much has happened, let’s see if I can catch you up. Alex has been sick since the second week of school. She has been to the doctors all but two weeks since the second week of Sept. She went from an upper respiratory infection, to pneumonia, to asthma, to throwing up, to another bout with pneumonia, to more with allergies, to some white spots (viral) on her throat. She is tired from fighting off all these things, so when she looks tired, I keep her home. During this time she also ran fevers twice---on Wed nights—go figure! She will see a pulmonary doctor the first week of December. So glad she is my healthy kid. We finally got them dose one of the H1N1 vaccine this past Monday.

Nick was so sick that he missed close to two weeks of school and had to drop out of one of his classes because the teacher said he couldn’t make up all the work since much of it was in-class work.

Chris and Kath—usually my two sickies have actually been better than the other two! Although battling odd things here and there, they are good.

We had a visit by Nana Linda and Grandpa Bob from Florida and we all enjoyed our reconnect time. We hope to see them soon.

We had some really great days intermixed with some challenging times. Kath has been going to preschool and doing really well. Some days she does better than others but she is mixing with in the kids, getting used to the transitions and getting along with other kids. She looks forward to going to school, getting library books and painting. We have clothesline across the doorway of the playroom and the entrance to the living room so that we can hang the artwork and projects for the girls. It’s like an art gallery.

Kath runs around the playground at school—the whole playground—and has fun climbing the jungle gym, but since she has the vision issues she has a little problem with kids running past her and running almost through her and almost knocking her down.

For the past two weeks Robin (our ‘nanny’ for the days I am working) or I stay outside the room while Kath navigates her school day without too much outside assistance. She is amazing. We had been behaving as her one-on-one aide until I began to see that we really seemed to be stifling her ability to have friendships and a connection with her teachers. She was also not able to work on becoming her own advocate and this chickie NEEDS to know how to ask for help, like none of my other children have. So in my desire to keep her the closest…I have to let her go sometimes, the most. This mom-job sucks sometimes in the most heartbreaking ways.
We still go out on the playground with her though because she needs a lot of help.

She had a great birthday and party with lots of love surrounding her. Can't believe she's three. We invited people who have helped us truly keep our heads on straight for the past year, we are fortunate to have such good friends/family. It was disappointing, but understandable that not everyone could come.

Kath had a sleep-deprived EEG on Wednesday. So on Tuesday we had to keep her awake for three hours later and wake her up 2 hours earlier. So we watched ‘Up’ and went to bed at 10. Then we got up at 5 ( I cheated here--since she usually does get up that early--but...). Our morning was so tight we didn’t have ANY wiggle room. Chris was on LI so I couldn’t even ask him to help out. I needed to have Alex catch the bus, then run straight to Albany Med. Of course she missed the bus and we had to wait for 25 minutes for the bus to loop back around (couldn’t drop her off because I never signed up for before-school-care and she would have gotten there too early). The bus came 5 minutes before I was expected to be at Albany Med—which is about 40 minutes away. Hit traffic—or at least people who drove the speed limit. Then I also couldn’t find a parking spot until we reached the roof. Ran in and apologized to everyone I saw. Still got yelled at by the lady behind the desk “You were supposed to be at check in at 8:45!’ ‘I am so sorry. They called up when I got here.” Then even the technician was annoyed and I thought stay calm, this won’t help Kath if everybody is excited. So I apologized another three times—to each of the women in that office. Tried to stay calm so Kath wouldn’t get riled and she might have the ability to fall asleep. Haha.

I really worked on my positive intentions and breathing techniques. And even though it was not a smooth experience I felt so much more in control and therefore it wasn’t upsetting for Kath. This was such a powerful feeling because so much of our lives are out of control, so it was a great lesson. Especially since this AM Roger's car broke down at 4AM and we had to scramble to get Chris (thank god he was home!) to pick him up, grab my car and head back out to finish his papers, he called into work so he could deal with the car issues and he had to drive me to school). (He then had to take care of the girls--I left him quite the elaborate list...:D Bring Alex to stop sure to have Kath's backpack...he was exhausted and said work was easier--he'll forget that by tomorrow! :D).

Still…when we first got in the room, Kath folded her arms, wouldn’t sit in the chair, said no and in general showed her stubborn side. The tech thought we would not be able to use the ‘easier and softer’ method of positioning the probes on Kath’s head, but I asked her to give it a chance, but she said she didn’t have a lot of time.

But she tried and Kath proved to her how great she could be. She sat still, watched Snow White, whimpered a bit during a few parts of the process but otherwise was good—I also rubbed some lavender on her beforehand to calm her. The tech was able to put a soft adhesive on the 20 something probes on Kath’s head then wrap a cloth around her head to keep them positioned. When we had to shut off the TV for the actual test though...I thought if Albany Med was smart they'd fix it so the kids could drift off to sleep while watching TV...not give the smallest rooms so you couldn't have the TV plugged in and still turn the chair so it faces....Anyway.

No results yet. We don’t actually have a neurologist yet—we see her new one at the end of December (her old one moved to Texas).

Afterward I picked up some lunch and drove to the airport where I sipped some coffee and wrote while she snoozed a bit. When she woke up she was very happy to be at the airport and was asking where the planes were. “Where planes go?” (palms uplifted with a shoulder shrug). We sat and enjoyed the time. Then went to Barnes and Nobles to get her the sticker book I promised her, but since they didn’t have it she got magnetic dolls and a book with birthday money. Alex, Kath and I had stopped at the airport after the doctor's appointment Monday night and enjoyed our dinner there. Fun stuff. They love planes as much as I do.

Kath also saw her orthopedic doctor in October and he was impressed with her progress.

She was in a Halloween Parade for school. It was really tough for me because we had to walk around town and go trick or treating at a few local businesses. She was delighted. She was dressed at Thumbalina.  Wings and all. But many people lower the bowl of candy and allow the kids to chose their own candy, and although that may have seemed nice and generous, for kids with cerebral palsy and a lack of fine motor skills…my heart was in my throat each time. The odd steps and pavement were so scary to watch her try to maneuver. But she did it. When she reached for the candy her hand would hover over the basket and circle around. The candy-offerers would say, “Oh you don’t know what one to chose, honey?” And my heart was breaking because I knew that she trying to force her hand to close in on one. Her OT, Laurie, though said to me, “Isn’t that great?? They can’t tell she has a disability? They just think she can’t decide.” That was a great switch in perspective. But it still hurt to watch how she couldn’t open the roped to the bag they made in school for this (but I knew that I needed a bag for her that stayed open at the top (thanks to Aunt Eileen for providing that)for the big Trick-or Treating with her sister.

Alex was Dorothy from The Wizard of Oz. She used the basket she carried Toto around in to be her Trick-Or-Treat bag. Alex had a Halloween party at her school and Chris got to go in and help out (he held the string high up for the kids to do the donut bopping. He also went on a field trip to the farm to get pumpkins. I’ve had to work both those days and Alex has LOVED having her big bro there! Chris and Abbi also walked around with us--in what turned out to be the rain on Halloween. Good sports.

Alex, Chris and I also finished a good soccer season. Alex scored in her first game and her last game…the only two games she wasn’t sick for. Chris and I received great parent evaluations. It was a lot of fun! Great experience and I met great people.

After that I helped out at Alex’s school book fair one night and listened to some mothers talk about how ‘none of the kindergarten moms’ have stepped up to take on a Daisy troop (youngest level of Girls Scouts). I spoke up and said, “I don’t think any know about it…I know I don’t!” No one really said anything helpful so I went home and started looking into it online. I decided I wanted to do it. So I am going for the training and starting my own troop. Alex’s old speech therapist, soon-to-be-Kath’s new speech therapist volunteered to do it with me. So we are pretty excited.

I decided to do it because I have several really good students who are involved in girls scouts, they do good things. I also don’t like too many other people having more influence on my children when they are so young (I taught Nick’s religion class for 8 years, etc). And I have a lot of things that revolve around Kath (therapy-wise) so I want to make sure that Alex doesn’t get lost in the shuffle.

A couple of cool things. Roger got to go on a weekend retreat with the writer’s group he belongs to. It was good for him to get away for a couple of days in the Adirondacks.

I presented about blogging in front of all teachers and staff in my district…and was even on the news (for two seconds and from really far way! But I was there!!!)

We had our first teacher conference with Alex’s kindergarten teacher and Alex is doing amazingly well. We are working on sight words, writing, reading and numbers. She also receives speech therapy with a wonderful teacher twice a week and loves it.

Things are always cooking here. I’m leaving out some things but basically things are good. Of course it would be easier if we won some money—wouldn’t have to second guess Kath’s therapies and bills would be easier, including paying for Nick's remaining school year. Ahhh. Of course if I never had to carry around Diastat just-in-case Kath ever had a seizure, life would be easier. If I didn’t have to worry about how Kath is processing and seeing and speaking and manipulating her fingers and feet, life would be easier.

But we are good. Life is good…but if you want to buy a Lotto ticket …we wouldn’t say no to any sharing!! :D

1 comment:

toyfoto said...

I'm glad you are well. I hope Alex feels better soon. Poor bean.

We're having a party for Annabel Dec. 19 at the house. It's at two. You are invited, but I know it's a busy time.

I miss you.