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.
Enjoy!
Saturday, October 3, 2009
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.
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.
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.
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.
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.
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
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!
Enjoy!
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!
Enjoy!
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.
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
This is the web site: www.cafepress.com/luckymamas
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