Sunday, January 25, 2009

Hearing test and other things

Hello everyone.

Friday I brought Miss Katharina to Albany Medical Center for her second hearing test. My brain IS SO out of it that I thought this was our first test, I thought the test in June was for Alex. Hmm. Good thing I write everything down, eh?

Anyway. Katharina was fantastic. She sat relatively still and allowed the testers to put probes in her ears, she allowed them to talk through head phones to her--she only had that one time before--her FIRST hearing test last June. Pretty strange concept if you think about it. She pointed to pictures of six different objects when requested to through the headphones, most of the time correctly. Considering that most of the time she sees ice cream it is in a bowl (a girl who has limited strength and control in her hands is not often given an ice cream cone!) she did well in choosing the cone or the cupcake-they both looked similar, ice cream-with sprinkles--at the appropriate time.

Then they had her listen to the headphones again and whenever she heard a noise on whatever frequency, she had to drop a block into a pail. That is a hard concept for Kath. It entails listening for something (while wearing probes and wires in front of strangers who stare at you!), taking a block and throwing it in a bucket. That's several activities. The audiologist was great. She took her time and taught Kath what to do, especially once she saw that Kath was actually watching her every move and learning. It took an entire bucket of blocks to understand but understand she did and she aced the test. The audiologist told me afterward (not sure if she said it just to make me feel good or not--though I will take her word!) that it was an activity that 3 1/2 year-olds struggle with. Kath turned 2 in November.

She passed the tests with flying colors, cognitively too. The tests for the most part really just inform us that her ears work--it cannot tell us that the messages are going back and forth to the brain. But she gave us pretty great indicators that things are working just fine.

Alex will have her first real hearing test on the 6th of February at Albany Med. Poor kid. I thought I did it already, considering she is getting speech therapy, it is a good idea for us to make absolutely certain that she is hearing correctly and all her listening facilities are in working order. We will be taking Katharina back to the neurologist and to a hematologist at Albany Med in February and we are also going to Boston Children's Hospital on the 12th of February to the Children's Stroke Unit. I guess it might be called a second opinion, I am thinking of it as an overview.

This week we have been the house of sick. Kath was throwing up in the beginning of the week, and now she has had diarrhea since Friday. Alex has had diarrhea. Roger and I have just felt blah and uncomfortable. Chris was vomiting as well. (Nick is very happy he is away at school--he had a meet at St Lawrence College this weekend--he jumped 19 feet in the long jump.)

I have some funny/good stories I will have to leave for another time--such as the floor crawl by me and Kath waking up and sleeping with me, but I am pretty tired and I have school tomorrow.

As a side note--I have chosen to sell Avon again as well as natural made candles. I will be posting my websites to this blog page soon. I am trying to improve our financial situation by: enabling us to pay our bills on time; saving money for emergencies, helping the boys pay for college, saving for the girls college, saving for our retirements. Avon is always great-they have great products and I buy these candles myself because they smell great and they burn clear-they don't leave dark rings on the glass jars, so they don't leave bad residue in the air for you to breathe. So, if you like either or are interested in either--I will have more later on the sidebar. :-)
What a saleswoman!

My true goal is still to complete my story for Kath and I am working on that too.
Have a great night!

Tuesday, January 20, 2009

Happy Inauguration Day!

Amazing day. So much history. So much future.

I am awed by today's events. I am awed by the sheer numbers of people who stood outside freezing to have a piece of today etched into their memory, live and freezing. (Although I would like to tell some that 27 degrees is pretty much a heat wave up here these days!) My best wishes and hopes are for today's hopes and optimism to continue and to lead us to more hope, peace and prosperity.

On the home front. Katharina is exploding with development. She attempts all words--her "Obama" is recognizable to Roger and I, but sounds like "baba" to anyone else. Who's the president, Kath? "Baba!" Well, that could actually have nothing to do with the political world but more of what is important to her in her world--her bottle! :-) But I think she knows so much more than she can speak.

I say that with much more certainty than I did even a month ago. She still does some whining and some other aggravating sounds, but she also will take my hand and drag me to the cabinet and point and say "cocoa" until I understand that she wants Ovaltine AND I better be putting it into the microwave to warm it up!

She is also RUNNING. Really fast. Much more balanced. Yes, she still crashes into objects--toys SHE threw around the room--walls--Bucca--her sister--the couch, etc, but it is much less than she used to. She has been running from the laundry room straight through to the living room and back again. She does this while SHRIEKING loudly. VERY loudly. And laughing. And chasing Alex.

She is also learning how to kid around. I snuggled up into Alex's bed one morning-while Kath was still in her crib and Alex was in the rocking chair. I said,
"Oh, my bed is comfortable."

Alex exclaimed, "No! That's my bed!"

I said, "No, it's mine. Right Kath?"

Kath looked at each of us and said, "Als." But I kept it up, teasing Alex. After about 4 times, Kath got this glint in her eye, jumped up in her bed as if she couldn't hold in her excitement--she figured out it was a joke! She said, "MOMMA!" the next time I asked who's bed it was. Then Alex was beside herself with laughter! Kath was so proud of herself. And we laughed.

We are blessed. Kath is progressing impressively.

For the rest of us. Roger went for an EKG Monday because of chest pains. He apparently had been having them all weekend but since our doctor wasn't open, he didn't want to say anything. Luckily, he was only diagnosed with bronchitis. (I would have killed him if he had a heart attack!)Then Monday night the girls ended up having sick bellies, which luckily went away as did mine. Roger ended up staying home today because he had belly issues on top of his bronchitis. But he is better, he even cooked dinner.

We are having an issue with Roger's car, and grades are due next week so we are at our stressful time, but life is good. Kath is progressing. We have a new president. There is more light in our days. A pilot safely landed a plane with 155 people into the Hudson River. The boys are studying at good schools. Life is good.

PS--Check out a new web site I added to my sites A high school friend of mine has begun this-and boy do these recipes sound very yummy.

Tuesday, January 6, 2009

Breaking the Code

I may have tapped this vein a little, but I don't think I really did much in explaining--or maybe I just dreamt it. ;-D

Kath will say seemingly disconnected things, but we have figured out her connection--her brain line of thought, I suppose. We broke her code.

If you say to her--"Kath, is your ba-ba (bottle) good?" She will say "Dadda" or "Mamma." That doesn't really seem to be part of any conversation until . . .you realize she is telling you WHO gave her the yummy ba-ba. If you tell her she has a pretty outfit or cool socks, she will again say one of our names and what she is telling you is who is responsible for dressing her.

Also last night I told Alex (Kath was already by the stairs) to give everyone a kiss goodnight. She came back to this dining room and went from Chris to Abbi giving out her kisses. She didn't see that Nick came into the living room until he said something but then she went and gave him his hug and kiss. So, even though she wasn't told specifically to do something, she figured it out and did it on her own.

Yea Kath!

Monday, January 5, 2009

More cool stuff

So since you get to hear me moaning--I want to share the laughs and cool stuff too.

Today Kath wanted to play a game with Alex and I. Zingo--like Bingo but with pictures. When pictures show up on this slidey thing you have to shout out the name of the picture if your Zingo card has it on it, then take the tile and put it on the correct picture of your card. Hope I didn't confuse you with my wonderful description.

So, Kath began to say the names of the objects she had on her card and then she took the tiles and placed them over the correct pictures on her card. Mind you, since she needed some help, Alex and I often had to nudge her along. "Say, dog, Kath. Say it out loud."

Kath beat us both. She filled her whole card with the correct tiles and said 'Zingo.'

She was quite pleased with herself.

As for Alex--because Kath needed extra time to say the words, she waited. She went from winning the game to coming in third. She helped Kath win. Then she and I played for second. When she finally filled her card she clapped and said, 'We all won!'

What a cool afternoon--thanks cousin Jen for that game!

Some Christmas Expressions

Couple of really funny stories about the kids.

~ After a few presents were opened, when asked if she wanted to open another present, Kath vehemently shook her said and said, NO!

~ Alex asked for a Baby Alive. She even asked one of Kath's therapists for it! She wanted this doll so much. It drinks a bottle, pees, poops, talks, blinks its eyes. She asked for this for weeks before Christmas. All Christmas and a few days afterward she loved this doll, hugged it when it asked. Ran for the potty when it said it needed to pee. Ran for food and water whenever it asked. Changed the baby, cleaned it. Took care of it. Slept with it next to her bed (not in her bed--she didn't want to get her bed wet). Then, mysteriously, I notice she allowed Kath to hold and carry the baby. She hardly LOOKED at the doll. I asked her what was wrong. "She always wants to eat. She always poops and pees. She's too much work. Katharina's taking care of her." She truly has stopped saying she wants to have kids. She did ask if all people HAD to have babies when they get older. :-D
We assured her that is not the case. She is relieved.

Hope you all are doing well!

Friday, January 2, 2009

New Year

I just started my 2009 letter to myself.

Each year I make us each do one--similar to the monthly letter I make my students write. Where was I. Where do I hope to be. How will I get there. So on and so forth.

This year was tough and all over the place, not at all focused.

After this past year I feel old. I look back on the things that bugged me last year. Ha. I look back on what my goals were. Ha. It is almost like looking back on a different life. On a different person. I had a similar feeling after my divorce, it was as though an entirely different person was staring at me in the mirror after I came through the other side of that heartache and misery. A stronger, better person, but different. And now I see a worn older person, who has earned her laugh lines and the tight lines around her mouth. A wiser (hopefully) woman who has learned to enjoy the moments more. Who has become more of a person of strength and who has a more solid core. I have learned life lessons through the hardships and tried to just understand life through other times.

I have lost my grandfather, my dog, my brother-in-law and grand Pepe. My grandfather, Lu and Pepe were old, they lived good lives. I miss them being somewhere in the world but they lived full lives. Joe's murder was too young and too violent. I still don't understand that. Probably never will.

I have learned how to say, "I have two boys in college . . . " and "Alex will be 5 this year." But I still struggle with "Kath survived a stroke that destroyed the left side of her brain."

I have written more this year than ever before. I have a great story that is growing instead of withering up. Yea!

I have started to read again-for enjoyment. Yea.

I have new goals. I even started to work on them.

I spoke to Children's Hospital in Boston today. When we went to the doctor for Kath's 2 year exam this week, our doctor told us that her last blood work showed an abnormality in her Protein C. A low count or something. This is a stroke indicator or something like that. She showed borderline. Our next step is a hematologist, so I decided Boston for a complete overview. She still has her heart murmur. I started to pull together her records so we can get this all checked out. Too many people keep saying, "Don't worry. She's okay." I need to make sure and not just listen to what I want to hear.

This is a huge one for me. It is a concession that this is truly bigger than just me not being able to wrap my head around it. It is really real. Which of course I knew, but hoped I was at least in part exaggerating in my brain.

I have started to clean and organize (things have fallen by the wayside for the past year-ahhh, what a MESS). But Kath follows behind and undoes my work. :-) Ah, well. I guess there will be plenty of time when she is out dancing and I am worrying about her being out!

I will throw myself into everything this year-researching Kath's stuff-healthy eating-writing-cooking-money saving ideas-teaching. Being calm and healthy. Enjoy and live and love. And Laugh. I will LIVE my life and pull myself out of the fugue that was last year. I will unclench my stomach and stop waiting for the other shoe to drop. And if I find comfort in silly uplifting stories and poems, I will not apologize. I am awake worrying, staring wide-eyed eyed at the sucky possibilities too many nights and when I need to take and give some solace from somewhere, I will not apologize. So, if I gush sometimes, try to understand me for grabbing the branches that present themselves as I am whisked away downstream. And if I pout and whine other times, try to understand me for shedding some anxiety and angst on you, dear reader.

As I have stated before--this blog writing (even if you get it as an email--it is my blog--and much nicer to read on the blog site, might I add!) is for me and for other parents who are/will go through this. Not that it isn't for y'all, but I think you read this differently. I think you see things differently. I know I did before I lived this journey. You can skip over segments. You can decide not to read. But for the parents and for me, there really isn't any skipping. It is with us every second, every day. Poor Kath was tired and stared off for a couple of seconds into nothingness and I couldn't get her attention--I was getting ready to pack her up and take her to the emergency room for a seizure. She has a heart murmur and I have to watch when she gets sick. When she chokes while eating, I make sure she isn't aspirating. When she runs I make sure I check out the area so when (not if) she falls she won't crack another tooth-if I can possible avoid it. And now I need to understand what this blood test is indicating to us in regards to the possibilty of another stroke. And then I also want her to be 'normal' so I have to back off and let her play and be a normal two year-old. Where are the books for this? :-D

It is a new year. I choose to begin by feeling strong and powered up for the year. I hope it will be a better year financially so that Rog can quit his second job. I pray we are strong enough to handle all that comes our way this year. I pray for creativity and good writing. I am hoping to finish my story and start looking for an agent/publisher by summer.

Good things for us in '09. I pray. Happy New Year to you all.