Sunday, November 30, 2008

Happy Thanksgiving and a side edit

Happy Thanksgiving all!

Edited: (This was written and not sent on Sat. Since then we lost Lucy, our dog of 16 and 1/2 years. She died early Sunday morning in her sleep. I do not wish to take away from Thanksiving or her memory so I will write about her at a later time, but I did want to mark the day and let you know.)

Although this year has been a wild year, we are very thankful for many, many things. We had the boys home for a turkey, mashed potatoes, sweet potato pie, green bean casserole, corn, gravy, bisquts, and a stuffing meal. Little homemade cheescakes, cookies and assorted not-so-good from a box desserts. I took shortcuts this year, no one seemed to mind that I didn’t make everything from scratch, it was a sanity move. The girls were delighted that their brothers were home and we all got to relax. And be.

Chris is back at school. The girls and I picked up Thursday and dropped him off yesterday, to the viewing of Christmas movies. We picked out a tree. This is the earliest we have ever chosen and gotten one. It seems like a good idea to get the tree and the decorations and start the season of joy and hope earlier this year. We seemed to need a little inspiration. :-) The boys didn’t balk at going so early, they just piled in and helped us chose one. Sadly, none of our usual haunts were open yet so we had to get our tree at Home Depot. It is a pretty little tree that fits nicely in our dining room area. I decided I wanted it here so we could truly enjoy it for the next month, where we could all see and make it part of our thoughts each day. When it is in the playroom we seem to only enjoy it when we purposefully sit in there and on Christmas. So . . . we have begun.

Alex is thrilled. She shows her baby dolls it—reaching up high so they can see it. Kath plays with some of the decorations that have begun to come up the stairs and she calls Santa “Ho-Ho.” Nick picked out the tree because it has blue tinted branches—it is our first of this kind and it is beautiful with a very perfect shape. Aunt Eileen sent us up with some presents so we have a few presents already under it.

Yesterday, Alex started to open one of her presents. I should have known something was up when she kept asking me which one was hers. She must have had some kind of idea that what she was doing was not exactly right because she didn’t just tear the paper off-she peaked in and said, “It has something to do with princesses!” I looked over and said, “Al . . .we don’t open those until Christmas.” She burst out in tears saying, “I keep forgetting!” Then she sobbed for 5 minutes. I passed her over to Chris and she cried on him too. Poor kid. So much to learn when you are 4.

The girls also played with the manger. Sorry to anyone who feels this was disrespectful. I kind of figured that Jesus would rather kids play with him than approach him with a hands off, eyes only type philosophy. There were Little People in the manger taking roles in the nativity scene. It was cute.

Anyway, we are starting to decorate and make our home and our lives a bit more peaceful and thoughtful. As with most everybody, this year we are unsure how many gifts will be under the tree, but we will not allow this season to pass without reflecting on what it truly means to be in the moment, to be at peace with how one is living one’s life (regardless of religion or beliefs).

This is the time of the year that we will have the first annual evaluation of Katharina’s Early Intervention team. I think we have begun to find our way through this and we seem to have found a little trail to follow. It isn’t as scary as it was (Lord, knows I am not trying to ask for further tests or anything!) a year ago. It is in a different realm now. Things are starting to make a bit more sense with how Kath learns and participates in life and how we can help her. How we can encourage what she knows and does. God, I hope I didn't just jinx myself!

She is playing by herself now. She loves the Little People that she got for her birthday and that Alex’s speech therapist gave her. She likes to put bags—pocket books or apple bags—on her arms and walk around the house saying “Goodbye.” She loves to empty out containers—food, magnets, anything. She loves books; she sits quietly and reads them, turning the pages and absorbing the pictures. She loves anything to do with Alex. And now Chris and Nick. And of course poor Bucca and us. “Poor” Bucca went through a box of dog treats in a couple of days—usually takes two weeks, because little Miss Kath kept feeding her. They are best of pals now. She also likes to do the little air pump that blows up balloons—a couple of weeks ago she couldn’t hold one end and pump with the other, but she is continually building up muscles.

So, Chris is busy working in his thesis and preparing for his girlfriend to come home from Scotland. We are very glad that she is no longer planning on going to India (our thoughts and prayers go to the people of Mumbia). Nick is getting ready to return back to school tomorrow; hoping he misses the snow. Alex will go through brother withdrawal—just as we will. I did get to watch a couple of movies with Chris (Pirates III and Elizabethtown).

Back to out decorating. Going to put on Otmar Leibert 'Poets and Angels' and enjoy the non-monetary aspect of the holiday while the getting is good.

Friday, November 14, 2008

Today Miss Katharina turned 2.

Today is an amazing day. More than it was even a year ago.

Two years ago I had the worst labor of my 4. The scariest. Even now when I think back, it frightens me. My blood pressure dropped to 64-47 at one point and I felt so comfortable with the floating away I was doing, until I realized I wasn't ready to completely float and that a new little one counted on me to help her through what were were doing. They gave me oxygen and then Katharina nearly hanged herself on the cord because she proceeded so quickly down the birth canal. Then she arrive face up and silent.

Apparently as difficult as that day was. It was not even her hardest and it wasn't until last August that I began to even think something else had happened.

But at her one year exam I said, "Something is not right." Luckily I have a great doctor who said, "I am not worried, but I trust my parents." So, with Kath not even pulling herself up, truly reaching for objects, and a few other worries, we were evaluated by Early Intervention. (My apologies for you who are weary of this story--but this is my way of dealing.) After her evaluation, we knew she qualified. She began PT in January--first week. Sue (her PT) said that we seemed to have gotten to Kath just in time--she had been starting to 'give up.' For the first few weeks Kath did not reach for toys--we had to pick her hands up and bring them to the toys. We had to move her muscles through the motions, physically. But she did start to show memory permanence, for when Sue bought a garage with doors, Kath remembered from the previous session that cars go under the door. That was a fantastic sign, since we had no real idea what kind of brain damage she might have had. When she went for the MRI and the diagnosis was given of 'in utero stroke with Cerebral Palsy, possible language and visual issues'--I keyed in on the words I could--CP.

In the past year I have found that as bad as any form of CP is, Kath is pretty lucky. Yes, she runs like a drunken sailor-often bouncing off walls and yes, she struggles to use her right hand without it causing her more grief, but she does have use. She is not clenched and even when she is tight, I can usually massage her muscles out of it. She has mild CP.

It is the stroke part--the part I couldn't consider--that after all is an old person's ailment--that I have now had to reckon with. I have this idea that it is like some fault line that erupted and glitched her wiring. You could see her trying to dig her way out of her silence with her own version of sound repetition, sign language and incredible eye contact. You can see her watch Alex or another person/child do something and then when she gets a chance she is mimicking the action to the best of her ability. Today, when we were at the Pre-K I checked out for Alex, she watched other kids running pell-nell. At first she stayed wrapped around my hip. But I could see her eyes and I knew that she was eventually going to kick out (I think I still remember the FIRST time she did that!) and move me to put her down. She ran like them. Wild and crazy. She, however, has the balance of a drunken sailor, so watching her run takes courage. She falls A LOT. Not just down--but she can't stop herself at all so it is like watching a car stall and crash into a tree. EVERY TIME. The teachers of the program were painfully grimacing and flinching their oohing and ahhing as I seemingly just stood there watching my daughter face plant. Until I finally had no more courage and I picked her up and wouldn't ALLOW her to do it again.

The thing with stroke survivors is that--as most people know from adults--they have to do something over and over and over and over again. It hurts to watch. It hurts to have people think I am callous about the face plants my miracle does. But if I ever want her to be able to push through and succeed, then I have to learn to back up and let her fall. Don't worry, I did put her down to run again, I just needed to slow my heart and take a couple of inhales to stop my panic.

That is one reason it is easier to avoid people. I can allow Kath to try and work through things at home without people who really have no idea--putting in their unwarranted advise. But, I digress.

Kath has had an amazing year. She is a beautiful, smart, funny, energetic, stubborn little girl. It has be an incredible year. I never want to live it over again though. Thank you very much. It was one of the most draining years I had. The months surrounding Nick's accident were tough, but this was a whole year of hanging by my fingernails.

I feel as though my brain being wrapped in cotton has been a good thing. I don't think I could have dealt with it all, full force.

So today. The three of us went to the Round Church to check out the Pre-K program. Kath and I watched as Alex participated. Alex was quiet and shy-but had no real fear of being there or of interacting with anyone. She said she wants to go back, so that is a good sign. Although I asked her later in the day about her favorite part and she said she couldn't remember what they did in school at all. Looks like THAT starts all the way back in Pre-k. Alex also had speech therapy afterward and did well. She works VERY hard to do well by Kate. :-)

After that the girls and I decided to run to ToysRUs. We got Kath the Little People Garage--funny that was the first toy her PT brought over and now 10 months later she can move it, play with it and enjoy it. We had previously picked up some new Little People at Kohls. Alex got a sibling gift of the Little People Airplane-she has not let it out of her hands since it came out of the box. The girls played so long tonight I didn't realize how late it was! Daddy made dinner--vegetarian Shepherd's Pie. He also made an Angel Food cake for her candles. Aunt Eileen and Pepe called to sing (Aunt Eileen ALWAYS sings to whomever's b-day it is-big or little:)). Stacey, Kath's special ed therapist sent her an e-card and many of you sent her cards--which she loved and carried around for days.

More later. Tired for now. Take care.

Thursday, November 6, 2008

God doesn't give you . . .

If I hear that one more time . . . .

The kids are doing great. The boys came home to vote (which sounds much easier than it entailed . . .). The girls both have therapies going now so that we are going 6 out of 7 days a week. Alex gets speech therapy now 2x a week. So Monday is OT and special ed for Kath. Tuesday is Alex's speech and Kath's PT. Wed is Kath's speech and once a month the teacher for the visually impaired. Thursday is Kath's PT. Friday is Alex's speech. Sat is Alex's dance (not a therapy) and Kath's hippotherapy.

Grades are due this week so we are both working hard to get it all done.

On the first day/night of snow Roger slid off the road while doing his papers. He called me at 5:30AM to ask me to call AAA. I had let it lapse. So, at 5:30 I was trying to transfer money and have AAA accept payment and send a truck. While I was doing all that the owner of the home he was in front of(one of his customers) came out and called his son-in-law down the street and at the same time a snowplow drove by and all of them got the car out. He has a little car body damage but that was it, he is fine. But a couple of days later we noticed he was leaking oil (might have been from before) and while he was doing the route the exhaust made a racket, so we put the car in the shop this week. The exhaust was an easy fix. But of course the oil issue is massive and will cost close to $1,000. Sigh. Because of this crazy economy a couple--yes more than one-a person and a place (a program Roger work with this summer) owes us money. My district cut the literary magazine I advise-- even though I have more students involved than ever before, that means a cut in my year end pay. So, it seems we are considering me going back to work full-time in September and putting both girls in school. Alex in public kindergarten program and Kath in a special school. Homeschooling ideas are not going to work. We just need to tread water until next Sept. Alex will be checking out a preschool program tomorrow. I want her to be eased into the schooling mode of life. :-) If she (and I)likes it she will go 3 days a week and one of Kath's therapist is trying to move her schedule around to accomodate us.

We think we must have killed someone pretty important in a previous life, since we no sooner feel we are coming out from under and we are walloped. Push that rock up the hill, get run over by rock, regroup, fetch rock, push rock up the hill and repeat countless times.

On a slightly different note, we were able to borrow special glasses from Kath's teacher for the visually impaired. With these goggles we were able to see how Kath MIGHT be seeing. The goggles showed a deficit in her span of vision. For example, she may not be able to see to the full right and to the full left and a spot in the middle may be missing as well. This helps one to understand how difficult walking and scanning the room may be--there isn't a continuous picture of an object--it is interupted. It breaks my heart to think this maybe how she sees. Reading will be quite the chore, and I imagine that driving will be out of the question, when she gets older. We had each of her therapists try them on so they could all see how she MAY be seeing. It amazed them all that although it is highly likely this is all she sees, that she does as well as she does.

I will send this now because I have held it in draft since 11/6 and today is 11/13. Tomorrow is Kath's birthday and I want something positive. :-) Good night.