Tuesday, December 29, 2009

Previous Post sent before it was ready

...it's fixed now. Enjoy! :D

Yea, more good!

Yesterday was the pediatric dentist appointment for both girls. Alex was great--as always. Kath started to act up, but she watched her sister then sat in my lap and let the dentist count, scrape and brush her teeth. The grey tooth is still hanging in there, little lose but okay. Alex has two 6 year molars coming in as well as two loose bottom teeth.

Today we met with our new neurologist. (Remember our old one moved to Texas.) Kath had just dozed off when we arrived at the hospital--sad that my kids know hospitals so well, but we are so fortunate that Albany Med has so many great doctors. When we went in to see the doctor, she wanted to be held, so I held her. Then she needed to be measured and weighed. She stood by herself and let the nurse do it. She even held out her arm and let her test her blood pressure! No issues. At all. We usually have to grapple with her! When Dr Powers came into the room she was fantastic, she let the doctor test her, she played while we talked and was just amazing. Dr. Powers was impressed with her and said that cognitively she thought she was great, she could see the physical parts could slow her down, but that she was compensating and doing amazing. She even said that she seemed mature for her age and otherwise age appropriate! It was great.

Tomorrow Roger's sister's family is coming for a couple of days. We are very excited to spend some time with them. Looks like Saturday will be our trip to Long Island. We need another vacation. :D

Happy New Year's all!

Edited from original.

Sunday, December 27, 2009

Top Stuff

So I don't slam you with catch-up stuff...I will do this in list format

1) In November I participated for the second year with NaNoWriMo (National Novel Writing Month). The goal is to write a novel (50,000 words) in one month. I reached my goal...kinda. I did hit 50000 words but it was not very good and with a lot of filler and fluff. But I did stay focused for a month (mostly) on writing and on my story. Yea me.

2) Chris got a job. He is moving to NYC next week, most likely sleeping on couches until he finds a place, but very excited to be finally employed. He is working for Amnesty International, their Planned Parenthood department. He will be moving in with his cousin and a friend once they do find a place, they will be apartment shopping this week (he tried last week when he was down for training, but so far the two places he set up to see canceled on him right beforehand--very professional. Considering what it takes for him to get down there, for them to cancel an hour beforehand is really quite rude. He is starting to see a different side to his romanticized view of New Yorkers, I think.)

3) Alex went to a pulmonary doctor at Albany Med Hospital. She has asthma and allergies. We now have an air purifier going in her room. Hoping that now that we are on break...she might recoup and heal. She is still the same amazingly happy and upbeat girl though.

4) Christmas was great. The girls were so excited. We tracked Santa on a NORAD site and got to learn a little about different parts of the world while doing it. They were thrilled when they came downstairs in the morning and Santa left a note; ate the cookies and drank the milk; his reindeer ate the special food (oatmeal with some kind of glitter to sparkle in the moonlight); and they saw the piles of gifts. Some fun gifts were the dolls that look like them and had matching outfits (from Avon--not American Dolls!), assorted games and books and other dolls. The boys got things they requested books, games etc. Roger and I were thrilled with our gifts too, books, the new John Adams movie,music, etc. and with just having everyone home for the day!!! The family gift was a Wii Fit. (Nick gave us his Wii system and we just had to buy the Fit component.) It has been a blast to see everyone doing the activities on it, I'm still trying to figure it out. :D We had a big meal of turkey, stuffing, mashed potatoes, turnips, gravy, green been casserole, corn, and biscuits. Homemade apple pie and cookies for dessert. Then the day after the boys went to visit family on LI and we headed out to MA to spend time with family there. It was great to see everyone but a little bittersweet since it was a year ago that Grand Pepe died, on Christmas Day. We both still miss our grandfathers on the holidays.

5) Kath's transition meeting, officially ending Early Intervention and beginning Special Ed services through the school district was last Monday. Now Kath's therapies will decrease in time to 30 minute increments but increase in frequency. So instead of the 8-9 therapies a week we will now be just about doubling them. We have also started Kath in a ballet class in town after school on Thursday's. So on Thursdays she has school from 9-11:30. She comes home and eats lunch, then we head to dance at 1. Physical therapy was at the same time but that will shift slightly now. We end at 1:45 and we have speech at 2. This girls is loving dance class and being a big girl. Loves her tutu and ballet slippers. For the winter the regular hippotherapy has ended but we obtained a much coveted Saturday opening. Yea!!! That will be after Alex's ballet classes.

6) Last night when I mentioned we were going to take a ride to the craft store to get some things for when the cousins come on Wed...Kath said, "Al stay home. Momma and Kath have time (have Momma and Kath time). Al stay home with dada." Haha.

7) Nick is home and we are loving our time with him home.

8) For the second year we didn't send out cards...yet. I might do something for New Years. So Merry Christmas all. It's not that we don't love you...it's just that with grades due, sick children and assorted other thrown-in issues, time was a struggle and that is what we decided had to give...but we have a great photo!!!:D So maybe I will work on New Year's cards! :D

9) Continuing on with the positive thinking...power of intentions and The Secret. I made a list of things for The Secret...thanking for the items I wanted to happen. Already I've seen a couple of the things come to pass. It is a powerful tool to alter how you perceive things so you can attract the good.... I continue to be thankful and I hope you are all well.

10)I have no 10. :D

Have a great day. Peace. Enjoy. Love.

Friday, November 20, 2009

Alex's first Day of School

Alex's first day of school

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 at...be 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

Saturday, October 3, 2009

This week at home

And it truly has been a week at home. Kath stayed home from school Thursday and Alex Friday. Roger and I have been fighting off the sickness...still. Chris is sick, but at Bennington this weekend for Trustee's Weekend. He was chosen in June to be the newest trustee member. Unfortunately he's fighting off the ick too.

I kept Alex home on Friday because her cough still hasn't gone away...and actually sounded worse. And because she sounded wheezy Thursday night. No fever though. Not since last week anyway. But when we went back to the doctor...and Kath was fantastic this time...she knew SHE wasn't going to checked...Dr Schottler-Thal could hear that her lungs didn't sound right, could hear the wheeze. She didn't bother to do the x-ray since indicators pointed to what she thought and she would treat it the same....It's Walking Pneumonia treated with antibiotics, fluids, rest and love. Of course I keep putting eucalyptus and peppermint on her too....

Kath's nose is still running too. She is looking better though.

Nick is fighting off a cold at school too, but sloughing through.

Let's see...a couple of fun spots this week:

Before I go to school some days, Kath likes to slow things down and snuggle. She wanted to have a bottle and have me hold her. We sat on the couch as we do many times and just talked or sat quietly. Suddenly she pointed to the wood sign above the sliding doors and said, "Wasat say?" This is impressive on a couple of levels. For one, it meant she was scanning with eyes beyond her comfortable peripheral vision. For two, it showed curiosity. For three, she knew that letters meant something...said something. She wanted to know what the sign meant ...said. The sign was a wedding gift from a friend from school. The sign ironically enough says "And they lived happily everafter." :-D

At night when we read I try to have the girls participate in the reading. We found a Dora book "Animal Parade" (yes, titles should be underlined, but my computer here won't allow me). This book has the characters surrounded by the words/verbs they are doing. So Boots has "Swing, Swing, Swing" Dora has "March, March, March" a frog has "Hop, Hop, Hop" around them and so on. When we read that book, each girl takes a turn 'reading' the words. Alex is thrilled to really recognize some of her sight words in our books. Kath is thrilled to 'read' and will often wake poor dadda up (he lays at the end of the bed while we read, with little feet often requesting foot rubs in between his dozing :-D), "Dadda, look I reading...Mach, Mach...." And she has worked hard on saying the ending sounds, need some work on the middle r-sound, but wow, is she impressive or what?? Lots of speech improvements. This week we are going on a field trip--apple picking with her class (Kath's).

Alex has her second Tiger Jam, first one the parents can go to on Tuesday. The very same day and time as Kath's field trip! Of course. I think I will be requesting help to be in two places at once....Really wish our grandparents lived closer sometimes. :-)

As for my writing...I don't really talk too much about it...as much as I thought I would, considering that was my original reason for starting this blog, until the world turned upside down with Kath anyway...I actually have been writing this week. About 3000 words. I printed off all I have so far, 30 pages, with the hope of editing and finding a steady thread to continue with, I feel like I'm all over the place. I'm very excited. I'm finding that I think about my characters and story setting and such as I drive around town and just at odd times during the day--it's almost like they're leaking through into my real life. Or as if they are living friends and/or part of a story I have read by someone else. Sounds strange, but hard to explain. It is as though I'm living this quote :The story I am writing exists, written in absolutely perfect fashion, some place, in the air. All I must do is find it, and copy it. ~Jules Renard, "Diary," February 1895.


Saturday, September 26, 2009

Reminder. A couple of you have mentioned getting my emails. I am writing on my blog..you are receiving notification through an email. Some of you may actually have been erased from the list by accident, let me know if someone isn't getting this and I will try to add them. But there is a limit to how many I can notify. You might just need to check back to the actual blog. I think there is a highlighted link at the bottom of your 'email' which will bring you to the actual blog page--where the pictures are...and you can bookmark the link as a favorite.

So we have made a very wonderful transition into the chaos that is school and outside activities and therapies and doctor appointments ...oh and work.

Alex absolutely LOVES school. She loves her teacher. She loves learning. She loves the playground. She loves everything. Although her class doesn't always behave--she tells me each day kids had to 'turn their card over'--the warning system for behavior modification--she loves it.

If the whole class is good, they will get a letter. If they spell Popcorn (or Popcorn Party) they will have a party. Guess what letter they are up to? That's right. Three weeks into kindergarten and they haven't even gotten the first P. Poor teacher! One day Alex said the boys got in trouble because they were playing swords with yard sticks. Ironically my 10th graders had done the SAME exact thing that very day! Guess boys never outgrown that! Haha.

She plays school, sings the songs and teaches Kath all the fun parts. Kath will actually sit and be schooled by Alex. Quite funny. Especially when Kath breaks out and runs around laughing, running away from her teacher!

Alex recounts the whole day from the second she gets off the bus, the walk home and then throughout the evening too. She gets off the bus around 4 ish. So we don't have too much time with her before bed. I am so glad that I am home every other day so that I can at least have a bit more time in the morning some days too and not be distracted by my preparations for school.

Kath has made remarkable progress in her school transition too. She listens to the teacher, plays well with the other kids, follows directions and has fun. I haven't been up with her during her school since last week because my school days have coincided with her school days, so Robin has stayed with her. This coming week I won't be there either, sadly. But she has been more focused and listening better than some of the other 'regular ed' kids!

This Wednesday I brought Kath up to the pediatric dentist. I took her to a dentist who was 45 minutes away and this doctor was worth the drive. She definitely had a way with Kath. Kath opened her mouth, let Dr Kim look with a mirror and even count her teeth! So the gray tooth is bruised. At this point we have to just sit and wait and watch. It will either heal and be okay. Fall out. Or get infected and need to be taken out. But she doesn't suggest root canal or any other invasive techniques. So, we wait. And I try healing touch and positive intentions.

Wednesday night was Alex's first Open House. It was for me to go up and be on the other side of that~! :-) Met up with not only her teacher, but her art teacher, gym teacher and her speech therapist. All wonderful people. She's in a great school.

This Thursday, while at school, I got a call from Alex's nurse. She was at the health office not feeling well. Actually Alex's teacher sent her down because she didn't look right. The previous night she had climbed into bed with me with a fever. I gave her some Tylenol and she was her usual perky self, so I sent her to school. I kept her home on Friday so she could rest. But by 9:30 I remembered that it was picture day. So I emailed her teacher, called the school and found out I could bring her up. We ran up to school and had her pictures taken. Then we went to the doctor where we couldn't see our usual doctor and where Kath screamed--yes SCREAMED--the whole time. She was a mess. In her defense she had fallen asleep and woke up without warning/transition time. I took Kath to get checked because her nose has been running all week but it changed to green (sorry to gross you out) that morning. Both girls were diagnosed with upper respiratory infections. They both aren't contagious...supposedly...but are drippy, coughing, tired people. Poor girls.

Of course, we have a jam packed weekend. Dance class. Birthday party. I am chaperoning the homecoming dance tonight. Tomorrow is a soccer game. Then Lori's son's birthday party in MA. Monday so far is just an oil delivery and hippotherapy.

I'm already backing out of things and hoping for rain/cancellation for Sunday's game so they can rest up. Chris is away this weekend, so it would be great if he didn't miss the game, too.

Not very creative in the telling but there it is. I left out all the things Roger and I had around all this...and our illnesses. ;-)

Have a great week.

Wednesday, September 16, 2009

Kath's first day of nursery school...

How exciting! Tuesday was fantastic.

Many of my fears were assuaged. Hopefully it will continue tomorrow.

Kath had a great time playing with the toys at the school after hanging up her jacket and backpack. She was followed and hugged...continuously by a boy who took a liking to her. Every time I turned my back, he was hugging her. Kath handled it ok, told him no and didn't hit him. Not too sure how patient she will be if he continues tomorrow though....But this same boy later took a little doll from her. She looked at me, (I didn't do anything-I wanted to see what she would do), she looked at him, walked over, stood in front of him, took the doll back and gave him quite the Kath stare as she walked away and either said No or Mine. He didn't bother her again. :-)

I was worried about how she would handle the transitions. When she was told she needed to work on the shape/bus glue project I thought she would say no, freak out, whatever. Instead she put the dolls away that she was playing with and she went and sat next to the teacher and matched up shapes and glued. As if she always handled transitions so well. Ha.

She played with play do, painted a big yellow picture, sat on her mat (has her name and picture) during circle time, had a job (feather tickler-she touched her friends with the feather and that meant it was their turn to get up and sit at the table to get snack). She played outside and overall was excited by school. The Gogurt was tough for her. The snack was yogurt in a squeeze tube. That is hard for her to maneuver. She struggles to hold it, squeeze and push it up. But she managed at least a bit.

When it was over (2 1/2 hours long) the parents started to come. She craned her neck to see and I told her that no one else was coming for her, since I was there already. She looked at me and said, "Hold me mama." Then and only then did she allow herself to lay on my shoulder. She slept through Physical Therapy.

That little girl worked so hard and had such a great first experience. Tomorrow we will have day two--hopefully it will be just as good.

Oh--almost forgot--too tired to go back and rework all this--sorry folks. During library time she sat on the rug...not on me. Even after she chose her book, she went and sat on the rug. She sat with her friend, looked through her book and enjoyed her little bit of freedom.

Today, Alex, Chris and I had soccer practice--it was so much fun--Sunday was our first game and we did so great. The kids are having fun and each kid scored at leat once--Alex scored twice. It felt bad after awhile.

My Open House is tomorrow. Have to get some school work done.

Hope all is good.

Saturday, September 12, 2009

First week of school

This week was a great day for us going back to school.

Roger started Tuesday and is having a great time with ideas and students. He was bursting with excitement this morning when he came home from doing the paper route. I am excited that I am still teaching a 9th grade honor's class, but I also looped up with one of my classes (moved up to 10th with one class) and then I also have another group of 10th graders. It has been fun so far!

Alex was so excited about riding the bus. We let her. She was escorted down to the bus on the first day by mommy, daddy, sister Kath, brother Chris and his girlfriend Abbi. She was thrilled when we waited, she danced. She needed help the first two days with the seat belt, but by Friday she was doing it by herself. She loves her teacher. She loves the grown-up feeling of school, too, I think. She is such a little sponge. They had a fire drill (it sounded 'like a duck being squeezed'-qwaa-qwaa-qwaa). She tells me each day who gets in trouble (that means they can't have a popcorn party). She loves art, music, health, gym. Next week she has library. She said that a couple of times (like when they watched a movie in health) she forgot she was in school. She gets so involved, she forgets. :-) Chris has made sure that he was down at the bus stop the first two days.

Yes, I still sobbed when my 3rd one got on the bus and waved with a HUGE smile until I couldn't see her anymore. Whoever says it gets easier is full of crap. Roger who went into school late so he could see Alex off, called me after he left. He asked, "What bus is she on?" I told him. 'Ok, I think it must have come already." "Roger? Are you up at her school?" "Uhm--ye..ah...." :D

On Friday she told me they needed to wear red, white and blue. She started to tell me she didn't want to---it's not my little fashion bug's usually-type of outfit. So...I told her that Sept 11th is a very special day for us and we have to remember it and honor it. I tried to water down what happened. Do you know how hard that is? Bad people took control of 4 planes....She said she understood why it was important. Last night before bed (hours and hours after we discussed it in the morning)she said she hoped that all those people were okay in heaven. (I didn't mention heaven.)"That they were taking care of one another." Love that girl.

Today Alex has her first return to ballet class. Tomorrow is her first soccer game. I overheard her tell someone she is a little nervous, but when we had practice on Wed, Chris and I were pleasantly ASTOUNDED by how aggressive Alex can be in going after the ball!

Now for Kath. Kath is having a very tough week without her sister around. I am still job sharing, so I am home every other day. She tells me in the morning, "No! You stay home!" But she is good for Robin, or at least that's what Robin says. :-) She misses Alex and with everyone's scheduled changed, she is feeling very unsettled. She is the one left home. So 'staying home' has become a big thing. And she asks all day when Roger will be home.

Then, as I mentioned, she hurt her tooth. I believe it happened when we were at PT one day at the park. That day I turned around and she had quite the bloody nose. I never checked her teeth other than to make sure they were there. But now I think that she hit that tooth, rehit it from when she first learned to walk and chipped her two front teeth on the tile floor in the foyer. When I saw it this weekend, the gum looked grey and swollen too. On Tuesday (of course this happened on a 3 day weekend!) I called and brought her in to see my dentist. She gently cried into my chest and wouldn't let the doctor see more than a peek or two. He said there was trauma and he would love to take an x-ray but he didn't want to frighten her any further. He suggested a pedidentist. So I began my calls-in the car, in the parking lot. Did you know that pediatric dentists do not allow parents in with children? How insane is THAT? So...as I have been searching, calling, contacting others about who they use, trying to find a friend of a friend, I have been doing healing touch, positive intentions and so on (hey, figured it couldn't hurt, right?) And the swelling is gone and the gum looks pinker. Huh. I bumped into a couple of medical professionals I trust and told them, asked them and they said they would not go the route of a root canal (as was a possible suggestion). She would have to be put under sedation. I am trying to avoid that at all costs, especially with this girl.

She also had her orientation on Friday for her school. She was mad because Thursday night was parent orientation and she couldn't come, Chris took care of the girls. :-) Her orientation was 1/2 hour long. She made a picture on a paper that has her name on it and she will sit on it (working on name recognition) during circle time. She tried to play with a couple of kids, some weren't as friendly. :-) She saw where her cubbie is, where to hang up her coat, where the class fish is, where the library is, the potty and so on. She was so exhausted with just that 1/2 hour that when we went to my school afterward she put her head on me and lay on me the whole time...except when she asked to get down..took my hand..and dragged me towards the door. :-)

Last night we went to a friend's book signing at Barnes and Noble and her little friend ran up to her to hug her and since Kath wasn't braced for the enthusiasm she fell backwards and hit her head HARD. She cried so loudly and then put her trains down and said she wanted to go home. I sat in the back with her and held her. She said her head hurt and I wanted to make sure that she didn't have any negative reactions. Then we got them ready for bed and I just couldn't stop thinking about it so I picked her up and brought her into sleep with us where I felt I could monitor her all night. She slept great and she is great this AM except for a little bump. I felt so bad for my friend. I think it bothered Kath that much more because she was so tired after such a busy day, despite napping in the car before food shopping (see I told you it was busy! :-))

Anyway, that was a quick trip through the week. Hope you all had a great week. We send out our thoughts to my mother-in-law who is mourning the loss of her husband, as I wrote last time.

Enjoy your week.

Monday, September 7, 2009

Just a reminder

Sometimes I update or edit a post, I made corrections if I forgot something. The updated version is on the actual blog, not sure if you get the corrected version, so feel free to check the actual blog and see the pictures of the kids on it, too!

Couple of quickies:

One of Kath's front teeth is turning grey. She chipped both front teeth when she was around 19 months or so...who knows if she rehit it since then. Calling doctor tomorrow.

When Kath gets bit by a bug she says, "A buggy EAT me!"

When Bucca (our dog) licks her, she says, "Babo EAT me."

Kath is now able to climb to the landing of their swingset that Roger built. Imagine climbing a height twice/three times taller than you with real strength only in one hand/arm. Imagine you are climbing on slippery PVC piping. She is amazing.

Tonight we were working on pointing with her right hand. She can easily do it with her left hand's pointer finger, but she usually points with her right thumb when asked. Tonight she held her right hand with her left hand and pulled her pointer finger up and out of her tight fist with her left hand...and the pulled her right arm to the book to point out the objects. And this process, though it took a relatively long time...she stuck with it. Repeatedly. And clapped for herself when she did it.

All Kath stories for the night..but you know my other kids are amazing too.

A Summer Wrap-up

I'm sorry I was not more diligent about writing here this summer. I actually didn't write much anywhere else either. I have been funking over my list and how I didn't accomplish the many, many items on my Summer-To-Do-List.

I didn't finish painting. I didn't organize the book room and bill piles. I didn't write. Well, you get the idea.

But I have to pull on the reins and consider all that I have done. I went out to brunch with Donna quite a few Sunday's. Love the Cheesecake Factory and their yummy omelets. We considered that cheaper than what we would have paid in copays for mental therapy. We were able provide therapy and support to one another. Thank you, Donna. Please continue prayers for Hope and her family as she continues to battle PLE.

I marked, by looking through pictures and quietly reflecting, the year since Grandpa Steiger died. I still miss him. I guess that is as it should be. People who make a mark on your life should always have a place. But I endeavor to live my life in a way that would make him proud and not simply wallow in my loss.

We had play dates. We went to the Bronx Zoo with the Sousi family. We traveled to visit family in MA several times (something we haven't been able to do since our head was turned around and upside down-just because..it was one more thing,can't really explain that to anyone who doesn't understand. Visited and celebrated with Janine and Bob, twice. Went to the free Regal Family Festival Movies. Went to the Clark Art Museum Family Fun Day with the girls and Roger and saw and made some great art...in the rain. Then met up with Chris and Abbi for ice cream afterward. Stayed with my aunt while she had surgery to remove nodules on her lung..that fortunately was benign. Had a little graduation ceremony for Chris. Had a great result on a mammogram. Kath had fantastic doctor visits. Made the very difficult decision to put Kath in a regular ed nursery school two days a week, as opposed to placing her in a special ed pre-k. Chris and I started to coach Alex's soccer team. A few hikes at Dyken Pond and one in the Catskills. A Hindu and Jewish wedding (same couple married under both faiths). Many visits to the 'beach' (ie Snyder's Lake and Grafton State Park). Restarted hippotherapy. I read more books this summer than I have the past 2 years. Chris and I saw about 5 movies (not Disney!).

Yes, we have had many unexpected things-car repairs, Nick was diagnosed with Lyme's again, a major scare as to whether or not we could send Nick back to school due to financial issues, a past student of mine passed away, and Roger's mom's husband passed away too, but when I look at all we DID do and all the good that did surround us, I am quite frankly impressed.

So, now that I restart school tomorrow, I don't have to feel as though I messed up my summer. We did A LOT. Even if I didn't write my novel. Even if I didn't finish my painting and organizing projects. It was a good summer.

This week's schedule is:
Today~ whatever to get us ready--wash, last minute supplies for the week and for Alex's school.

Tuesday-Roger classes and I have a superintendent day. Kath has PT and Speech. 5PM is Alex's little orientation and meeting the teacher.

Wednesday-first day of classes for Averill Park. Alex is planning on taking the bus. Mom will try not to follow the bus. 6PM Alex's soccer practice. Kath has OT.

Thursday- My first day of class. Kath has PT and speech. 7PM Kath's orientation for her school.

Friday-Kath's orientation at 9:30. A friend of ours has a book signing that night!!

Saturday- Alex restarts ballet. (Kath starts the following Sat-both are at different places--of course!)

Sunday-Alex's first soccer game 12:30.

Monday three of us go to school. Kath has special ed, OT and hippotherapy.

Tuesday -Kath starts school. Kath has speech and PT.

And so it continues. :-)

Life is good.

Friday, July 17, 2009

"Momma, I want to be a boy."

That's what my Fancy Nancy Princess told me this morning. She decided this because--even though she doesn't understand it all...having a baby come from there...is just gross. BUT she wants her voice to be the same (I'm guessing she meant she didn't want a sex change).

I will write more later/tomorrow, but I wanted to share that we had a great week of therapies and the neurologist.

So tired my eyes are closing as I write this--but LOVE when we have a couple of days good news and I wanted to share.... :-D

Sunday, July 12, 2009

Thank God it's Summer!

Hello there. It certainly has been a long time now hasn't it?

Let me try to catch you up.

It is now summer vacation for us so that means much of our responsibilities outside the home have been cut--yes, we still have work to do for school...but much can be put on a back burner and forgotten while we attempt to pull our house, our bills, our doctor appointments and so on back to order. We are tackling one room at a time and considering how disgusting things are...it is about time.

Bills. eish. Not even going there. Roger is still working his second job--which begins with him waking up at 1:30 each morning. Now that it is summer he is attempting to get naps, but our two little ones don't really allow for much of that.

...Though we have been trying to sip cups of coffee on the front or back porch while we ponder how to best deal with Kath's upcoming meeting with the school district.

Since she will be 3 in November, she will age out of Early Intervention (EI) and she will be in the capable hands of the school district. What that means for us is to decide how we want her educated. In a program for special needs kids--which she qualifies for according the recent evaluation (she showed huge gaps in her short term memory, not to mention her fine motor skills and delays in cognitive abilities and speech). Or do as her developmental ped suggested and 'don't mess with what's not broken' and keep her home with her therapies and allow her to attend a preschool program with Robin or I acting as her one-on-one aid. The developmental ped said that her scores were in range for normal, considering...but what we need to consider is that at 3--the skills expected jump exceptionally and she might struggle in school and as time goes on.

I watched her during the evaluation not know where a plastic duck was...5 seconds after it was placed under a cup..in front of her..and unmoved. She was never able to recall where it was. Since she does not speak clearly enough for others to understand her she is also unable to tell us (and the evaluator) if she understands a story. She is able to draw a line up and down, and a circle--that never stops--but she is unable to draw a line (each time asked) across a paper. She often does well when I am able to comfort her and redirect her though. Today at the Summerfest she was on the motorcycle ride and though she was strapped in, she didn't have the strength to keep herself upright in the seat as it went around and around. She was half off the ride and I was near tears and Rog, Chris and Abbi stationed themselves around the perimeter of the ride to jump in if needed. Her vision issues also make the rides that circle around very troubling for her--she can't seem to focus.

We see many gaps..but that is not to say we don't see a flourishing little girl who is quite bold and stubborn. She crossed her arms and told Roger "No!" this week! She is trying to learn how to jump...so she climbs on the couch (!) and basically THROWS herself down. One foot is pretty good at getting airborne, but the right food forgets to jump so it forgets to help her land. Does this stop her? Hell, no! Not even when we go to the playground. And we returned this week and could see a huge improvement since last week--she climbs up and down the equipment much steadier--we are hoping to have Physical Therapy at the playground this week. Oh and she ran in her first race the Thursday before-- 1/4 of a mile! She finished last, but she finished. She was also just getting over a flu like cold. (Alex came in second!)

She also seems to be saying a lot more words and she is a bit like a Pit Bull because she will repeat a word if you don't understand it--over and over until you do get it. Today she said, Momma, coat on. Me cold. :-)

She likes to help feed the fish--we acquired an aquarium from a fellow teacher at school who was moving. Sadly we bought more fish and subsequently lost many--just about 1/2 to Ick--a fishy disease. But she loves to watch them, especially when the 'sucker fish' cleans the front of the tank. :-)

We started both girls (and us) on Fish Oils and we see a HUGE improvement! More later.

So Roger and I are loving the freedom of some time. Today Chris and Abbi watched the girls and we went for a hike. While we sat down and breathed in Dyken Pond we realized that neither one of us could recall last summer. This past year was horrible in many respects. We were knocked for a loop and then we had no time to get back up before we were hit and knocked down over and over and over. If I listed all of the things..it would be a sad blog...but that is not my point.

Our apologies go out to anyone who feels we have neglected them. We know we weren't the best friends and family members this year. From Kath's diagnosis, Roger's accident, Nick's accident, my grandfather passing, Roger's grandfather passing, Lucy (our dog) passing, money issues, assorted health issues, amazing amounts of therapies for both girls and doctor appointments for everyone, school issues (Ok so I listed some anyway! ;-D)... we basically 1)don't know if we forgot something from you, our memories were in overload in a thousand different directions. We have found invitations and such after RSVP dates and even on the day of the event; 2) we just hung on the best we could with the help we did receive; 3) we both tend to pull into our turtle shell when things get crazy and we don't always tell anyone we are struggling and need help.

This was a tough year. We know we don't have it the worst. God, believe me, we know. But we do know that we were slammed by so much this year that it was like being hit by a wave and dragged under. Then just when we pulled back up to the top of the wave we were dragged back under and this repeated itself all year. All year.

So, now we sit on the porch and drink coffee and try to get reacquainted with one another as we play with the girls, hang out with the boys (and Abbi :-)) and try to rebuild the friendships and family relationships we neglected. And I try to get myself back into my writing.

So as we put our home back in order, we hope that you're doing well and that you can try to understand. We love our lives. We are ever so grateful for what we have. We love who we are watching our children become.

Speaking of which! Chris graduated from Bennington College this June! We are planning a party in August--so stay tuned. He was amazing. He wrote TWO thesis! One in Spanish and one in English. Amazing kid. He is home now relaxing from the frenzy of the end of term and working on determining his next step. He has a dream of opening a book store.

Nick is doing well too. He is now a frat brother, so feel free to torment him. He is working at the same camp he has been working out for the past few years. He is a counselor and the Sport Program Director.

Alex begins kindergarten in September and she is very excited. Though she is also having a great summer. I woke her up last night so we could go up to the Summerfest's fireworks. It was quite the night time adventure, even if it did rain. Pour. She works on being a therapist to Kath--she makes up schedules for her and has her do things like 'mouth exercises.' She also talks on her fake phone...and sends and receives text messages. She is a riot. Now she is making up songs and RHYMING! :-) The other day she told me (again) that she feels like God is up there reading a book to his son and we are the characters in his book....

Well, that's it for now, I suppose. Have a great night/day!

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.

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: www.cafepress.com/luckymamas

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.

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 www.foodiesvision.com. 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.