Wednesday, February 25, 2009

Online shopping for Stroke Awareness Items

My friend Annette has her own online shop that you can peruse for Stroke Awareness Items.
This is the web site:

Sunday, February 22, 2009

We visited Dr Foster on Thursday. It was a week (vacation) of Roger being sick and me watching Kath like she might explode. I took the girls to the State Museum on Tuesday and we had a good time. This is part of my 'Baby-Brain-Boot-Camp.' Alex loved learning all, seeing all. We had to rush through and we never made it to the second floor or the carousal. We will be returning. Then Friday Roger came with us when we visited the Children's Museum in Saratoga. Both girls LOVED the playing--Alex said it didn't feel like a museum. And it didn't--kids were running around like crazy playing--which is what the idea was. There was a firetruck and fire station, a construction site, a bank, market, diner, trolley. It was a lot of fun. We also had a couple of therapies this week, even though it was vacation week. We had lots of play time, too.

Back to the neuro on Thursday. Turns out the polymicrogyria that Dr Rivkin (Boston)( told us is the same thing as the pachygria Dr Foster (local) told me about 9 months ago--just that well . . .they are different sounding words . . .and each doctor put a different emphasis on different parts of it. So --yes we need to be aware of seizure possibilities and we left with a prescription to fill for 'just in case.' We also will be going for another EEG so we can start monitoring her more closely for any problems she might develop--so we can head them off. Because of the injury to her brain she is more likely to develop seizures, but we are hoping she is spared this.

Dr Foster does believe that she did have a stroke--he hasn't moved away from that. Which is too bad since I was starting to feel better and move away from the picture that I have in my head of her having a stroke in utero and me not knowing it. If she hadn't had a stroke then it would have crossed off the chance of her having 'another' but that comes back on.

The damage is on both sides of the brain--only time will tell how that will impact her.

Thankfully we have witnessed her blossoming this week while we have been home with her. She is playing like a 'normal' two year-old. She role plays--gave two dolls two different voices when playing. Cares for her babies-feeds them, talks to them, holds them . . .and tells us to be quiet since they are usually going to sleep. She brings books to me and if I don't sit and read she becomes very insistant. Very. She pulls my hand and pushes it so I sit down. Tonight I was watching something on TV and she took the book and REPOSITIONED it in my hands and said "Book!" She also saw Alex playing with a little Barbie I-Pod that came in a book (Alex thinks she is hot stuff listening to excerpts of classical music on her I-Pod!), so when Alex put the I-Pod down, Kath ran over, grabbed it and RAN into the playroom with it. She was even trying to put the ear pieces in her ears. When Alex came home from dance class on Saturday, Alex performed her dances for me (Roger took her to class) and Kath stood slightly behind Al, watched her and repeated the steps . . .and 'sang' too. She is doing some pretty great stuff. I took out one of my children's book that I put away a year ago because it shows you where your child should be developmentally and she was SOOO far behind it broke my heart. But now I can see how she is delayed--but progressing. It is very motivating for our baby-brain-boot-camp. :D

I have also been able to wrap myself around the new info from the past week in a better way. Whether it is due to the sunshine--too bad it is snow again!--the vitamins--or power of intention--I have decided I will not live in fear and I won't have the family hovering in that place either. We are in a good place. We are mostly well--Roger is feeling better :-). I seem to set the tone--not to brag--but moms might know what I mean--and if I am stressed and cranky I am not only not able to think and be creative in different ways that could help Kath, but I make everyone else stressed and uptight. So, I am going to try to keep the positive feelings going and hopefully attract the good and positive. I will write more about Australia another time. "Australia??" you say. Yes, another time. :-D

There is a boy from the list-serve for Hemikids that did have a pretty serious seizure and he was on life support and is still in the hospital--since
last week, so if you could send some prayers that would be great.

And my friend Donna's Hope is still in the hospital. She developed a clot and has been working on fighting that and her protein deficiency. Please keep her and Donna and their family in your thoughts. A 14 year-old in the hospiatl is not an easy thing.

I was just painting--have some more school and writing to do--it's only 11:41PM. :-D I hope this finds you all well.

Monday, February 16, 2009

Groundhog Year

Did you ever see the movie "Groundhog Day" with Bill Murray? He plays a man who has to relive the day (Groundhog's Day) until he gets it 'right.'

We must be in need of learning some lesson. I say that in an almost "I'm kidding" way.

A year ago we were told that Kath had survived an in utero stroke, had CP and assorted other issues.

This Thursday when we went to Children's Hospital in Boston we were told she may not have had a stroke, but may have something called polymicrogyria. We were also told the damage is on both sides of the brain. Dr. Rivkin said he would not be surprised if when we talk to him in 6 months we told him Kath had several seizures. He said she would probably struggle with math (so do I!). . .have a heavy ILP (need aides) . . .and he alluded to, but didn't say (though the web sites have no problem saying it) mental retardation. I asked if she would ever do his job and he said it was unlikely.(Thanks to cousin Jenn for coming with us and watching Alex while we went in for our appointment.)

That being said he also said he hoped he was wrong and we call him names in a couple of years. (ad libbing)

We are trying to understand this new info with the realization that on Thursday we will return to our local neurologist and ask him a whole bunch of questions. And possibly need to sort through more info. They also took 30 mls of blood to do genetic and other tests.

We have gotten a couple of emails from moms on the hemikids list serve who told us how their children are doing. One mom has a a fellow 2 year-old and another's is a nine year-old who is part of the gifted and talented program at her school and has never had a seizure.

While we are trying to understand this new country we have opened a door to, we look at the same little girl we held Wednesday and we know that nothing on any MRI can truly tell us Kath's limitations and expectations.

That is easier to say at certain parts of the day than others. I have struggled with hives for the past week--the pre-Boston anxiety and now the post, I assume. The week before I spent a week in a neck brace with a 'pulled' neck muscle. So, I am trying to find meaning, measure and peace.

Chris returned to school for his final semester at Bennington College yesterday. We had a great day today with the girls. We created our After Christmas/Valentine's Tree. Our live tree made it from Thanksgiving to--well, it is still with us. We brought it outside yesterday after we took off its Valentine decorations and today we decorated it for the birds and squirrels. Paper towel rolls cut in half and toilet paper rolls were lathered in peanut butter and bird seed with bright red yarn strung through the centers, then hung on our tree that is now residing on our back deck. The girls loved making the bird feeders for their feathered friends and we have bird seed every where. We played outside, made ice cream sundaes, drank cocoa, read, colored and played. It was a good day.

Kath had therapy with the teacher for special ed--Stacey. Stacey said that although she notices that Kath cannot always point to objects when requested and struggles with puzzles, she wouldn't deem her mentally retarded . . .especially when Kath tries to outsmart Stacey for her doll!

Apparently last week and then we saw this week, Kath was playing with a really cute doll Stacey brought that moves her arms and talks, laughs, cries. Last week when it was time for Stacey to leave--Kath hid the doll and then began to point to the dog or something else--to distract. This week she tried to keep saying no and then came over and hugged me. She really wanted to distract us from remembering the doll. Hmm... mental problems?

Dr. Rivkin mentioned memory problems, too. Well, as soon as I told Kath that Stacey was coming she was thrilled. When Stacey showed up, she immediately started to ask for the doll. Mind you, Kath sees Stacey once a week. And she also has OT. Speech. And two PT visits a week. Plus as I said a trip to Boston. Hmm... I think Kath will be breaking many expectations.

That is my prayer.

I also ask you to pray for my friend Donna. Her daughter Hope is in the PICU of Albany Med with a variety of issues that sprouted from her body forming strep viruses and since she has HLHS (hypoplastic left heart syndrome)it is a serious matter. They are both amazing people.

I hope this finds you well. Enjoy the sun!

Monday, February 2, 2009

Darn Groundhog!

So today's writing was going to be funny stories, but I have to begin with something sad for us. I just opened an email from Liz, Kath's PT for hippotherapy and Kath's horse, Mark had to be put to sleep. This is the horse you see in the pictures down the side of this blog that Kath is always riding. Alex started on him too. He was a great friend for us to start hippotherapy with and we will miss him. We haven't been able to do hippotherapy for several months so we missed him before, but it is very sad knowing our old friend will not be there to greet us when we return--hopefully next month.

There is no great way to transition from Mark's passing into funny stories, so I am just going to start a new paragraph.

Alex was telling me how she thought the movie 'Enchanted' was great since at the end the princess marries the prince. I told her--in my mommy-feminist voice--that not everyone had to get married. That one had to choose wisely, that sometimes one THINKS they know what they want, blah, blah, blah. I told her one needed to find someone who loved her with all his heart, made her laugh and worked really hard. She said that, "I would marry daddy, but YOU already did!"

Ah, well, yes, I did.

So, then she said, "I will marry Chris or Nick. They make me laugh a lot."

"Well, you aren't allowed to marry your family members . . ."

"I do NOT think it is right that THEY can tell me who I can marry!"

After a few minutes she decided that she will marry Max, our neighbor across the street who she goes to pre-k with.

We have a mouse or something in the laundry room. We have tried to catch it. Yes, we do have a cat. Roger says all we are really doing is feeding the darn thing with our traps. Well, now it is getting a little too comfortable. I can hear it. This morning I went into the laundry room and through to the garage to put something in the refrig in the garage. Kath, my follower, was right behind me, though she luckily halted at the steps, gently calling, "MAMA!MAMA!" I have no idea where she THOUGHT I might escape to . . . . As I started to close the door I looked down into the bucket we use for Bucca's food (and to hold the door closed)and saw a mouse-ish body. I, of course, was cool, calm and collected. Haha. Can't even type it with a straight face! I screamed and did this weird jump/run dance to the steps and practicaly hopped over poor Kath who couldn't move out of my way fast enough! Eik.

Later I checked and the 'dead' mouse was not there. This explains why Bucca won't eat her food--someone else is. But why on earth my cat won't get this thing is beyond me! Alex simply yells in her blood thristy 4 year-old way, "Moran (name of our cat), come kill the mouse!"


I have grades due tomorrow. See me working on them? So, I decided to get an easy dinner. An already made chicken from the deli department, corn bread, macaroni salad, cranberry sauce and green beans.

"Where does chicken come from?"

Oh great. "What do you mean, Alex?"

"Where does chicken come from? What animal?"

"A chicken."

"You mean that comes from a chicken?? Why do we kill chickens?????"

"Because we like to eat them," I say as I serve the meal.

"Well, they taste good, but that's mean . . .killing a chicken."

"You can be a vegitarian if you like."

"Well, it tastes good . . . "


Same meal, a bit later. She told Rog that he couldn't have the corn bread. It wasn't good for him.

"What are you talking about, Al?" Roger asked.

With her eyes darting from me to him and back to the shrinking corn bread, 'Well, it tastes good and you're eating it all."

So she told him it was bad for him--like bad for his heart so she could have more.

Wicked child.

Where did she learn that?? :-D


Sunday, February 1, 2009

One Year Anniversary of sorts

It is the one year anniversary of when we received the news that Katharina's MRI showed she survived a massive stroke to the left side of her brain, while in utero. Her brain, instead of being pink and wrinkly is white and flat.

However, if you saw Katharina today when Alex, Kath and I were in the mall and they were licking HUGE lollipops (the kind you see in movies), or when she was feeding herself (and her shirt)ice cream, or when she and Alex were laughing so hard at the balloons they got from Friendly's, while walking the length of the mall, that people stopped to watch and smile, you would never guess so much damage could be done to a little brain and it learn how to compensate so well.

Yes, we have years of therapy in our future. A bunch of Dr appointments in the next month alone. And Kath and I visited Village Preschool, a school for kids who have an assortment of issues, and we will have to decide her path in education in the next couple of months.

But as I keep saying . . .we are ever so fortunate. The oxygen that mysteriously shut off and caused Kath to stroke, just as mysteriously came back on.

And we share our lives with the crazy chick who survived a stroke before she was even born.