Hello everyone.
Things here are going well. We are drying out from all that rain--not as bad as Florida with Tropical Storm Fay, but still flooding here. Roger has been working on a wood shack and playset for the girls. He is making a structure over some of our wood that will also support a climbing wall and ladder for the Climbing Sisters. Next year will be a swingset. Chris helped with it before he went back to school--his senior year!!!
The boys are back in school. We moved Chris in on Sunday. He is training this week to be a dorm leader--that is not the right word, I am blanking out. I brought Nick up on Wed. and he is training to be a delion, he will be a mentor/cheerleader for the freshmen on his floor.
Alex has been getting funnier and wiser. She is very humorous in her approach to viewing life. I will give samples later. :-) Kath has continued to show amazing strength of spririt and heart. She worked on Friday and Saturday with the hippotherapy. She rode Mark on Friday and today she and Alex both rode Cody. Kath also had healing touch and yoga. I see such a great deal going on with her. Alex has even remarked how much more Kath is understanding and following directions. She washes herself, she gets napkins for dinner (she usually only gets one--brings it to the table and then either gets bored or forgets and that is the only napkin for the night, but it's a start!), she gets her sneakers/sandals when we say we have to go bye-bye. She tells us (when asked) if she went to the bathroom. She is still not speaking but she makes herself known-especially if she dislikes what you did or did not do. She continues to push herself physically and we continue to as well with her therapies.
This week she did not have speech since Liz was on vacation, and she became a bit frustarted with Laurie (OT) and Sue (PT) but in totally normal kid-way. It was great to watch, on the one hand, because it was so NORMAL. It was so TYPICAL of her actual age.
Kath was evaluated (did I tell you this already?? Too tired to double check, sorry) by a teacher for the visually impaired. She qualified. The teacher who evalued her said that she could only do a once a month evaluation with her, so Kath will have a special ed teacher once a week. I will also have a social worker who will help me keep everything straight--no pressure Stacy!
We are a little (ok a lot) disappointed that our insurance told Liz (hippotherapy) that they cover the hippotherapy for unlimited visits for 120 days. We will be up to that in the first week of September. After that we will have to pay on our own until the next year starts. So we are going to try to fit in as many days we can before school starts. And then decide what we can do. EBC Therapy is working very hard to keep us going, they love the girls! :-) Who doesn't??
Well, I am off for now. My computer keys are sticking--hmmm, wonder why ALEX! :-) PBSkids.org Girl. Good night.
Saturday, August 23, 2008
Saturday, August 16, 2008
Mid August
Somehow, I thought I would be further along in my 'To Accomplish" List for the summer. The list that grows and grows throughout the school year, but then does not seem to have anything crossed off during the summer. Ah. But I have made some progress this week. Though I seem to have had to hit a bottom in order to get back up.
I mentioned before about the down feelings and the dragging feelings that I get. They really smashed me this week. I was so heavy feeling and cranky. One positive was that I read in one of my mom books from the libe that many American's (moms) are short in Omega-3 and that contributes to the depression that overwhelmed moms feel when dealing with disabled childcare. So I started to take Omega-3 and St John's Wart. I also read how important it was to get outside and soak up 'sun' even when the sun wasn't 'out.' I am unwilling to allow this feeling to take anymore days from me. I feel guilty when I get down, I feel like I am wasting my life moping when things can be so much worse, but anyone who has ever felt this hopelessness and helplessness knows that it is not rational, it seems to be more ingrained or internal. Anyway, I am chipping away at it and working at it.
I have been writing. Yea! I have been taking time to write at night, but it has been a little weird for me since this is the first time I have ever written where I truly feel like the story has a mind of its own. I start off thinking I am going in one direction and I end up somewhere completely different.
We are all enjoying watching the Olympics. Love Dana Torres. What a woman. What an inspiration! Micheal Phelps, Jason Lesiak and all the other swimmers (blanking out on their names) are so amazing. Love the beach volleyball and of course track too. The marathon was amazing.
Gymastics! Alex started to tie a ribbon around her hand or leg and do 'tricks' like the athletes she saw on TV.
The boys were home today and we went out for lunch to cover Roger's and Chris' birthday since we will not all be together again until November. We move Chris in tomorrow and I drive Nick on Wednesday. Janine and Abbi came over afterward to enjoy dessert with us. Their birthdays are coming up too.
Kath has been doing great. I have started to release my tight lease on her. Mostly because she is showing me that she can do more. We went to our neighbors', the Collins', to play on their swingset. Kath loved the swing and held on with both hands to the ropes. Go Kath! She liked climbing up the slide-not the ladder. :-) She liked to RUN down the little hill. At first I freaked and yelled, "Kath! No! Slow!" Then I could do nothing but watch as she threw herself down. She fell. I told her she was okay and to brush it off. She did. Then she pulled herself back up, walked back up the hill and continued to 'run' down it until she could do it without falling-which only took another two times or so.
She has also started to enjoy climbing more and more. She likes to climb on my outdoor reclining chair. I put the bottom portion down for her so it was a ramp she had to climb. At first she struggled to pull herself up, then she started to walk up it. Then down it. The boys complained that I would never let them do that. I told them, "You are right." I would have yelled at the other three for trying anything like that, but with Kath I see all of the work it takes her to balance and pull and rebalance. She is amazing. Not that they aren't too. (smile)Nick was a nervous wreck and yelling at me to take care of 'my child' as he saw her walking up and down the chair. "She's goingto kill herself!" Then after a few minutes of watching her and working with her she told us that she is doiong it fine . . .now that he trained her. (hee,hee)
More soon!
I mentioned before about the down feelings and the dragging feelings that I get. They really smashed me this week. I was so heavy feeling and cranky. One positive was that I read in one of my mom books from the libe that many American's (moms) are short in Omega-3 and that contributes to the depression that overwhelmed moms feel when dealing with disabled childcare. So I started to take Omega-3 and St John's Wart. I also read how important it was to get outside and soak up 'sun' even when the sun wasn't 'out.' I am unwilling to allow this feeling to take anymore days from me. I feel guilty when I get down, I feel like I am wasting my life moping when things can be so much worse, but anyone who has ever felt this hopelessness and helplessness knows that it is not rational, it seems to be more ingrained or internal. Anyway, I am chipping away at it and working at it.
I have been writing. Yea! I have been taking time to write at night, but it has been a little weird for me since this is the first time I have ever written where I truly feel like the story has a mind of its own. I start off thinking I am going in one direction and I end up somewhere completely different.
We are all enjoying watching the Olympics. Love Dana Torres. What a woman. What an inspiration! Micheal Phelps, Jason Lesiak and all the other swimmers (blanking out on their names) are so amazing. Love the beach volleyball and of course track too. The marathon was amazing.
Gymastics! Alex started to tie a ribbon around her hand or leg and do 'tricks' like the athletes she saw on TV.
The boys were home today and we went out for lunch to cover Roger's and Chris' birthday since we will not all be together again until November. We move Chris in tomorrow and I drive Nick on Wednesday. Janine and Abbi came over afterward to enjoy dessert with us. Their birthdays are coming up too.
Kath has been doing great. I have started to release my tight lease on her. Mostly because she is showing me that she can do more. We went to our neighbors', the Collins', to play on their swingset. Kath loved the swing and held on with both hands to the ropes. Go Kath! She liked climbing up the slide-not the ladder. :-) She liked to RUN down the little hill. At first I freaked and yelled, "Kath! No! Slow!" Then I could do nothing but watch as she threw herself down. She fell. I told her she was okay and to brush it off. She did. Then she pulled herself back up, walked back up the hill and continued to 'run' down it until she could do it without falling-which only took another two times or so.
She has also started to enjoy climbing more and more. She likes to climb on my outdoor reclining chair. I put the bottom portion down for her so it was a ramp she had to climb. At first she struggled to pull herself up, then she started to walk up it. Then down it. The boys complained that I would never let them do that. I told them, "You are right." I would have yelled at the other three for trying anything like that, but with Kath I see all of the work it takes her to balance and pull and rebalance. She is amazing. Not that they aren't too. (smile)Nick was a nervous wreck and yelling at me to take care of 'my child' as he saw her walking up and down the chair. "She's goingto kill herself!" Then after a few minutes of watching her and working with her she told us that she is doiong it fine . . .now that he trained her. (hee,hee)
More soon!
Thursday, July 31, 2008
Thursday
Hello!
Today was beautiful in the AM, rainy in the afternoon. But a good day for me.
Kath had PT this AM with Sue and she had to work on going up and then DOWN the stairs. Up is no problem--the going down backwards . . .that is a struggle. She screamed as Sue walked her limbs down the stairs. Then when she got down, she turned around (after a couple of sips from her bottle) and started to climb right back up! Sue asked if she wanted to go back up, she nodded her emphatic yes and Sue reminded her that if she went up, she also need to go down BACKWARDS. She said ok. So up she bounded. She stopped before the top (wet/shampooed rug stopped us from using the top step)and asked for help to turn around. She struggled and cried some, but she worked through it several more times. She was amazing. She also worked on stepping on a sound mat with both feet.I tried to help her lift her right foot onto the sound pads and she was very tight. In the afternoon Roger had to wake her up for speech and OT and he said she did well. I picked Nick up from camp, drove him to the dentist, he needs his wisdom teeth out too! Then he and I had dinner at Houlihans and shopped for new cleats for his frisbee tournament this weekend in MA. It was great spending one-on-one time with him. No interruptions. When we came home Rog and I took Bucca and the girls for a walk.
It was a good day.
Roger said Kath was a devil today, hitting, biting and being a . . .devil. He was very relieved when I came home. I think I just need little breaks so my brain has some recoup time. And of course it is good to be able to focus on the boys for a little bit before they head back to college. I end up feeling guilty because I ask the same questions and seem as though I am not listening, but I am distracted sometimes. I wonder why . . . .:-)
Alex also had dance class today, which she loved!
Still waiting to hear on financial aid stuff for Nick, hopefully when that is set I will be able to sleep. I was up until 2AM, when Roger was just getting up for his route, then up at 5 cleaning pee and poop from Lucy. I went back to sleep at 6:30 and stayed asleep until 8. So, maybe I will sleep good tonight!? We'll see. ;) Long live coffee!!!
More soon!
Today was beautiful in the AM, rainy in the afternoon. But a good day for me.
Kath had PT this AM with Sue and she had to work on going up and then DOWN the stairs. Up is no problem--the going down backwards . . .that is a struggle. She screamed as Sue walked her limbs down the stairs. Then when she got down, she turned around (after a couple of sips from her bottle) and started to climb right back up! Sue asked if she wanted to go back up, she nodded her emphatic yes and Sue reminded her that if she went up, she also need to go down BACKWARDS. She said ok. So up she bounded. She stopped before the top (wet/shampooed rug stopped us from using the top step)and asked for help to turn around. She struggled and cried some, but she worked through it several more times. She was amazing. She also worked on stepping on a sound mat with both feet.I tried to help her lift her right foot onto the sound pads and she was very tight. In the afternoon Roger had to wake her up for speech and OT and he said she did well. I picked Nick up from camp, drove him to the dentist, he needs his wisdom teeth out too! Then he and I had dinner at Houlihans and shopped for new cleats for his frisbee tournament this weekend in MA. It was great spending one-on-one time with him. No interruptions. When we came home Rog and I took Bucca and the girls for a walk.
It was a good day.
Roger said Kath was a devil today, hitting, biting and being a . . .devil. He was very relieved when I came home. I think I just need little breaks so my brain has some recoup time. And of course it is good to be able to focus on the boys for a little bit before they head back to college. I end up feeling guilty because I ask the same questions and seem as though I am not listening, but I am distracted sometimes. I wonder why . . . .:-)
Alex also had dance class today, which she loved!
Still waiting to hear on financial aid stuff for Nick, hopefully when that is set I will be able to sleep. I was up until 2AM, when Roger was just getting up for his route, then up at 5 cleaning pee and poop from Lucy. I went back to sleep at 6:30 and stayed asleep until 8. So, maybe I will sleep good tonight!? We'll see. ;) Long live coffee!!!
More soon!
Wednesday, July 30, 2008
Retreat and then nonsense
This past weekend was the New England Retreat for CHASA-Children who have Hemiplagia and Strokes. It was wonderful. We arrived Friday night too late to swim or do much of anything other than walk around and go to sleep. But we had hippotherapy in the AM way out in East Bern at EBC Therapy Center (a little plug for them--the website is listed in my fav sites on the left side of this page. You can see Kath's horse Mark and Alex's Babe who she rides; Flint who she wants to ride and Pony Girl who is her dream horse). Then it was hard to get everybody focused and rolling out the door, but we left around the time I wanted to be there so that meant we had to eat dinner on the road. We decided to stop at Lee Outlets to get some yummy/ healthy stuff Rog could eat and so he and Alex could get sneakers. Alex did, he did not. Kath had her second fall of the day there, she scraped her face on the pavement, earlier she fell into the kitchen chair. Nice! Bruises and scrapes in time to meet new people. Luckily many deal will the same thing.
Saturday AM we met the group for breakfast and everybody spoke t one another and were so very friendly and open, it was amazing. Lots of sharing of ideas and experiences. Even if no one had the same exact experience, we could all relate. We even got the name of an eye doctor in Boston who is excellent with children. We feel our own doctor visit left much to be desired considering how often Kath falls and runs into things. ("Just give her lots of hugs and keep doing whatever you are doing, she is adapting well.")
Alex played with other kids and didn't seem to notice anything was different until, Sunday AM when she asked why one boy had a 'cast' on his foot. She didn't seem to notice many of the kids had some brace of one kind or another on or walked with a limp or didn't use a hand. There was one other boy who was Kath's age. She was very shy this weekend and pretty much to kept to us and walking off by herself --ha! we were right behind her.
It was great for Roger to be able to talk to other dad's and make connections. I think it really opened him up to Kath and some of what she is experiencing. I know I felt awed by what other moms have dealt with and found strength in being able to have others understand how much work goes into making our kids 'fine.' We all expressed hearing from others how they seem to be fine and what are we worried about. :-)
Saturday we also played around the lake, played miniture golf and went in the pool. Kath actually just picked up my golf ball and put it in the hole for me, she must know how terrible I am. The place, Sturbridge Host Hotel was excellent and beautiful. We didn't feel we had enough time for everything. We took the girls down to the lake both nights to look at the stars. The second night they were dipping into the lake and enjoying the surreal aspect of the lights and live band from the restaurant and the stars. It was great.
Sunday we headed over to Sturbridge Village. The girls loved walked around. Kath just loved walking, Alex enjoyed going into the homes and checking them out. She was never without a map trying to tell us where to go. We even took a horsedrawn wagon ride around part of the village. We would like to go back (they have a deal where you can go back within 10 days for free) since we didn't get to see everything and it started to thunderstorm on us when we were at the furtherest point from our car. Memories of Chris being struck flashed into my mind and I just wanted to get out of there.
It was great. I made friends with people who even if I do not see them again until next year's retreat, I know would listen and be there for me if I emailed them. Amazing group of people. There were kids who had all sorts of issues in addition to the hemiplagia--heart problems, lungs that were 'shredded' on the ECMO machine, premies, and so.
Then when we came back home the nonsense began. The basement flooded AGAIN. This time it was really bad and Rogr spent all day Monday working it and is still working it and being stubborn. Wasted our whole day, didn't get to take the kids to the Sciene Museum. I am working like mad to get the boys' finances set for school-- what a headache. I need to make money with my writing. Oy.
Kath has had and continues to have a busy week. She had PT and speech Tuesday but she also had an evaluation from a teacher for the visually impaired. As Kath is more mobile she is doing more damage to herself because she does not see very well and walks into things, trips over objects and falls. Scary and sad to watch. She also maybe struggling with doing certain tasks, like puzzles and shape sorting and other identification types activities because she doesn't see correctly. Kath qualifies for 2x a week but it will be up to us if we can handle that much more in the services area. We are also trying to keep Alex in dance and possibly sign them both up in some time of activity class. Roger took Alex to the free movie and lunch this week. They saw Mr Magorium's whatever. :-) They enjoyed their time.
Alex helped me weed the garden Tuesday afternoon while Kath and Daddy napped. We worked on it for about 3 1/2 hours. My hand was like a claw after that, still feels stiff but the garden looks great and seems to be sighing and soaking up that extra space and growing better already. Today the girls and I headed out to Home Depot, Dollar Store, Target and the library. (I had the dentist his AM and my mouth was numb for hours!)We picked out some pretty perenials, some stones for the garden path and a variety of other items. When we left the strip mall and arrived at the library I realized that I had not fastened Kath's safety buckles! I had to lift her over 2 seven foot poles to get her in and said that when I got around to Alex's side I would buckle her. But when I helped Alex I pinched her leg in her buckle. I felt so bad for Al, I forgot about poor Kath's buckle. So when we got to the library and I went to take her out of her seat, I was confused for a second, what? Then I realized what happened. I said, "Thank you God for watching over my baby and keeping her safe!" Alex turned around and said, "Thank you grandpa for keeping Kath safe."
Alex was talking this morning about how much she misses grandpa. She just talks about him out of nowhere, seemingly nowhere. I said,
"What if we plant a tree in honor of grandpa and then we will have the tree to remind us of grandpa?" She loved the idea and now we are working on what type of tree would be good for grandpa.
As for my writing. I was the goals moderator on my writing forum and that was about as much as I did this month with writing. Although today while the girls slept in Home Depot's parking lot I did read over my story. Amazingly enough . . .I still like it. Usually I would hate it by this point or think it was terrible. But I really like it. I met a 16 year-old at the retreat who I asked if he would help me by providing me with some ideas of what teens who are stroke survivors and have CP go through, so I could write more accurately. He also told me he loved the book Stuck in Neutral. It is about a boy who has CP. I have a copy on request at the libe.
Lately I have been feeling pretty tired and blah again. Dr Orsi thinks I might suffer from depression. I think it has to do with never finishing a project. All day I start to clean, start to organize, start to do wash, start to do a million things and I have to stop to drop off, pick up, therapy, therapy, therapy, therapy, breakfast, lunch, dinner, clean up after Lucy, take Bucca out, foodshop, change diapers and so on. I don't get to complete my thoughts. I don't get to complete my ideas/projects. Ideally I should be able to get things done when the girls and Rog go to sleep. But now I am obssessing over financial aid, Nick being out, Chris being away, money, how much therapy is saturation? Am I giving Alex enough time and attention? And pure exhaustion at the end of the day. (Especially as I keep them up later to enjoy the summer nights.)
So completing the weeding Tuesday was a goal. Started and finished. I did it. Amazing how I slept better and got up feeling more chipper. So my goal is to bring the focus in. Get the things done that give me a feeling of some control and completion.
Then maybe I won't forget to buckle Kath in.
Maybe if I can reagin brain function a little at a time over the next month, then maybe when school begins I will be able to breathe and teach and be okay. All sounds good before tomorrow starts and dropping off, picking up, therapies, naps and so on start all over again. :-)
Saturday AM we met the group for breakfast and everybody spoke t one another and were so very friendly and open, it was amazing. Lots of sharing of ideas and experiences. Even if no one had the same exact experience, we could all relate. We even got the name of an eye doctor in Boston who is excellent with children. We feel our own doctor visit left much to be desired considering how often Kath falls and runs into things. ("Just give her lots of hugs and keep doing whatever you are doing, she is adapting well.")
Alex played with other kids and didn't seem to notice anything was different until, Sunday AM when she asked why one boy had a 'cast' on his foot. She didn't seem to notice many of the kids had some brace of one kind or another on or walked with a limp or didn't use a hand. There was one other boy who was Kath's age. She was very shy this weekend and pretty much to kept to us and walking off by herself --ha! we were right behind her.
It was great for Roger to be able to talk to other dad's and make connections. I think it really opened him up to Kath and some of what she is experiencing. I know I felt awed by what other moms have dealt with and found strength in being able to have others understand how much work goes into making our kids 'fine.' We all expressed hearing from others how they seem to be fine and what are we worried about. :-)
Saturday we also played around the lake, played miniture golf and went in the pool. Kath actually just picked up my golf ball and put it in the hole for me, she must know how terrible I am. The place, Sturbridge Host Hotel was excellent and beautiful. We didn't feel we had enough time for everything. We took the girls down to the lake both nights to look at the stars. The second night they were dipping into the lake and enjoying the surreal aspect of the lights and live band from the restaurant and the stars. It was great.
Sunday we headed over to Sturbridge Village. The girls loved walked around. Kath just loved walking, Alex enjoyed going into the homes and checking them out. She was never without a map trying to tell us where to go. We even took a horsedrawn wagon ride around part of the village. We would like to go back (they have a deal where you can go back within 10 days for free) since we didn't get to see everything and it started to thunderstorm on us when we were at the furtherest point from our car. Memories of Chris being struck flashed into my mind and I just wanted to get out of there.
It was great. I made friends with people who even if I do not see them again until next year's retreat, I know would listen and be there for me if I emailed them. Amazing group of people. There were kids who had all sorts of issues in addition to the hemiplagia--heart problems, lungs that were 'shredded' on the ECMO machine, premies, and so.
Then when we came back home the nonsense began. The basement flooded AGAIN. This time it was really bad and Rogr spent all day Monday working it and is still working it and being stubborn. Wasted our whole day, didn't get to take the kids to the Sciene Museum. I am working like mad to get the boys' finances set for school-- what a headache. I need to make money with my writing. Oy.
Kath has had and continues to have a busy week. She had PT and speech Tuesday but she also had an evaluation from a teacher for the visually impaired. As Kath is more mobile she is doing more damage to herself because she does not see very well and walks into things, trips over objects and falls. Scary and sad to watch. She also maybe struggling with doing certain tasks, like puzzles and shape sorting and other identification types activities because she doesn't see correctly. Kath qualifies for 2x a week but it will be up to us if we can handle that much more in the services area. We are also trying to keep Alex in dance and possibly sign them both up in some time of activity class. Roger took Alex to the free movie and lunch this week. They saw Mr Magorium's whatever. :-) They enjoyed their time.
Alex helped me weed the garden Tuesday afternoon while Kath and Daddy napped. We worked on it for about 3 1/2 hours. My hand was like a claw after that, still feels stiff but the garden looks great and seems to be sighing and soaking up that extra space and growing better already. Today the girls and I headed out to Home Depot, Dollar Store, Target and the library. (I had the dentist his AM and my mouth was numb for hours!)We picked out some pretty perenials, some stones for the garden path and a variety of other items. When we left the strip mall and arrived at the library I realized that I had not fastened Kath's safety buckles! I had to lift her over 2 seven foot poles to get her in and said that when I got around to Alex's side I would buckle her. But when I helped Alex I pinched her leg in her buckle. I felt so bad for Al, I forgot about poor Kath's buckle. So when we got to the library and I went to take her out of her seat, I was confused for a second, what? Then I realized what happened. I said, "Thank you God for watching over my baby and keeping her safe!" Alex turned around and said, "Thank you grandpa for keeping Kath safe."
Alex was talking this morning about how much she misses grandpa. She just talks about him out of nowhere, seemingly nowhere. I said,
"What if we plant a tree in honor of grandpa and then we will have the tree to remind us of grandpa?" She loved the idea and now we are working on what type of tree would be good for grandpa.
As for my writing. I was the goals moderator on my writing forum and that was about as much as I did this month with writing. Although today while the girls slept in Home Depot's parking lot I did read over my story. Amazingly enough . . .I still like it. Usually I would hate it by this point or think it was terrible. But I really like it. I met a 16 year-old at the retreat who I asked if he would help me by providing me with some ideas of what teens who are stroke survivors and have CP go through, so I could write more accurately. He also told me he loved the book Stuck in Neutral. It is about a boy who has CP. I have a copy on request at the libe.
Lately I have been feeling pretty tired and blah again. Dr Orsi thinks I might suffer from depression. I think it has to do with never finishing a project. All day I start to clean, start to organize, start to do wash, start to do a million things and I have to stop to drop off, pick up, therapy, therapy, therapy, therapy, breakfast, lunch, dinner, clean up after Lucy, take Bucca out, foodshop, change diapers and so on. I don't get to complete my thoughts. I don't get to complete my ideas/projects. Ideally I should be able to get things done when the girls and Rog go to sleep. But now I am obssessing over financial aid, Nick being out, Chris being away, money, how much therapy is saturation? Am I giving Alex enough time and attention? And pure exhaustion at the end of the day. (Especially as I keep them up later to enjoy the summer nights.)
So completing the weeding Tuesday was a goal. Started and finished. I did it. Amazing how I slept better and got up feeling more chipper. So my goal is to bring the focus in. Get the things done that give me a feeling of some control and completion.
Then maybe I won't forget to buckle Kath in.
Maybe if I can reagin brain function a little at a time over the next month, then maybe when school begins I will be able to breathe and teach and be okay. All sounds good before tomorrow starts and dropping off, picking up, therapies, naps and so on start all over again. :-)
Wednesday, July 23, 2008
Miss you Grandpa
I don't want to hear that summer is almost over. I am not even half way through.
Tough month. Sick for half. By the time I went for the xray, nothing showed up that was irregular--I had been on meds for a week and was breathing better. Just about done with the meds now.
Great Grandpa Steiger died on July 16th. He was in a lot of pain at the end so it was a blessing for him, but it still leaves me feeling like there is a hole in the world. I have never known the world without him here. Somewhere. Even if I didn't see him, I knew he was here. Alex crept up with me to the casket and prayed to him, constantly telling us she misses him. Kath reached over while I was holding her and touched his arm, blew him a kiss and signed 'shhh' (for sleeping). After the funeral-beautiful ceremony with TAPS played by a real live bugler, and two Honor Guards folding and presenting the flag to my aunt-- Alex asked us in the limo if grandpa was in the casket. I said yes and she just started crying. Sad for everyone especially my Dad and Aunt Eye. I will miss his good heart. Alex feels a little better knowing he watching out for her now.
I stayed down with Aunt Eileen with the girls and tried to spend time, after Roger and the boys returned home. We went to Bayard Cutting Arboratum and Fire Island Lighthouse. We plan on getting back down and beaching with Aunt Eye.
Before this Grandpa Bob was up from Monday to Thursday and the girls (and us) had a great time hanging out with him.
Roger worked a National Board Retreat the previous week and was in the Adirondicks for a CASDA retreat when grandpa passed away.
Nick had a car accident on his first day of work. While trying to avoid a speeding car on one of our terrible gravel roads he lost control and flipped his father's car over into a ditch. He had no injuries, other than a couple of scratches. He went to camp (he is Sports Director) and scraped his hands while sliding on gravel ( imbedded gravel into his palms). That was a worse injury. He has tested as still having Lyme's, too.
Chris has been helping Roger with the route so we have been able to see him a bit. He is now considering a motorcycle. I will never sleep again at this rate. He is considering NYU for grad school.
My writing has suffered drastically this month. I did the three reviews for Resource Links and that was really great. I will let you know if I am published. But I have not worked on my writing at all. Pretty pathetic. But I ahve been the goals moderator for the writing forum again.
I was doing great with losing weight--3 pounds a week--but the stress of the last week has not been kind. Oh, well. Start over.
Alex has shown more interest in reading, she actually carries around a copy of The Neverending Story. And then she 'reads' it to me during the day. She HATED this book when I tried to read it to her. She actually hid the book so I wouldn't read it! Now she 'reads' it to me and says it's her fav! She is also working on writing and storytelling much more. We are reading the Narnia series.
Kath showed a different side to her visual issues while on LI. In the funeral home there was a sunroof in the lady's room. Kath was fine until she saw the trees blowing through the roof then suddenly she gripped onto the sink countertop and looked at me with such fear in her eyes I grabbed her and held her tight. She seemed to have vertigo or something. The next day she walked to me when she noticed it but she looked like someone on a tightrope, trying not to look up and trying to keep her eyes focused on me. Then at the beach, on the boardwalk, she wanted to walk so badly, but once I put her down, she froze. She looked down, saw the beach grass between the wooden slats and couldn't move, she became lead and locked up. She was going to be evaluated by a teacher for the visually impared last week, now it is rescheduled for next week.
This week we have had OT, PT and speech. Today Roger, the girls and I met up with Kristen, one of my students from the first year I taught. We saw Wallace and Gromitt for our free movie then went to Johnny Rockets. Tomorrow is dance class for Alex, PT and speech for Kath. Possible libe trip afterward. Friday is hippotherapy then the ride out to Sturbridge to the New England Retreat for kids and families of hemiplagia. I am so looking foward to this!
Hope everyone is doing well. Excuse the errors.
Tough month. Sick for half. By the time I went for the xray, nothing showed up that was irregular--I had been on meds for a week and was breathing better. Just about done with the meds now.
Great Grandpa Steiger died on July 16th. He was in a lot of pain at the end so it was a blessing for him, but it still leaves me feeling like there is a hole in the world. I have never known the world without him here. Somewhere. Even if I didn't see him, I knew he was here. Alex crept up with me to the casket and prayed to him, constantly telling us she misses him. Kath reached over while I was holding her and touched his arm, blew him a kiss and signed 'shhh' (for sleeping). After the funeral-beautiful ceremony with TAPS played by a real live bugler, and two Honor Guards folding and presenting the flag to my aunt-- Alex asked us in the limo if grandpa was in the casket. I said yes and she just started crying. Sad for everyone especially my Dad and Aunt Eye. I will miss his good heart. Alex feels a little better knowing he watching out for her now.
I stayed down with Aunt Eileen with the girls and tried to spend time, after Roger and the boys returned home. We went to Bayard Cutting Arboratum and Fire Island Lighthouse. We plan on getting back down and beaching with Aunt Eye.
Before this Grandpa Bob was up from Monday to Thursday and the girls (and us) had a great time hanging out with him.
Roger worked a National Board Retreat the previous week and was in the Adirondicks for a CASDA retreat when grandpa passed away.
Nick had a car accident on his first day of work. While trying to avoid a speeding car on one of our terrible gravel roads he lost control and flipped his father's car over into a ditch. He had no injuries, other than a couple of scratches. He went to camp (he is Sports Director) and scraped his hands while sliding on gravel ( imbedded gravel into his palms). That was a worse injury. He has tested as still having Lyme's, too.
Chris has been helping Roger with the route so we have been able to see him a bit. He is now considering a motorcycle. I will never sleep again at this rate. He is considering NYU for grad school.
My writing has suffered drastically this month. I did the three reviews for Resource Links and that was really great. I will let you know if I am published. But I have not worked on my writing at all. Pretty pathetic. But I ahve been the goals moderator for the writing forum again.
I was doing great with losing weight--3 pounds a week--but the stress of the last week has not been kind. Oh, well. Start over.
Alex has shown more interest in reading, she actually carries around a copy of The Neverending Story. And then she 'reads' it to me during the day. She HATED this book when I tried to read it to her. She actually hid the book so I wouldn't read it! Now she 'reads' it to me and says it's her fav! She is also working on writing and storytelling much more. We are reading the Narnia series.
Kath showed a different side to her visual issues while on LI. In the funeral home there was a sunroof in the lady's room. Kath was fine until she saw the trees blowing through the roof then suddenly she gripped onto the sink countertop and looked at me with such fear in her eyes I grabbed her and held her tight. She seemed to have vertigo or something. The next day she walked to me when she noticed it but she looked like someone on a tightrope, trying not to look up and trying to keep her eyes focused on me. Then at the beach, on the boardwalk, she wanted to walk so badly, but once I put her down, she froze. She looked down, saw the beach grass between the wooden slats and couldn't move, she became lead and locked up. She was going to be evaluated by a teacher for the visually impared last week, now it is rescheduled for next week.
This week we have had OT, PT and speech. Today Roger, the girls and I met up with Kristen, one of my students from the first year I taught. We saw Wallace and Gromitt for our free movie then went to Johnny Rockets. Tomorrow is dance class for Alex, PT and speech for Kath. Possible libe trip afterward. Friday is hippotherapy then the ride out to Sturbridge to the New England Retreat for kids and families of hemiplagia. I am so looking foward to this!
Hope everyone is doing well. Excuse the errors.
Thursday, July 3, 2008
Summer . . .ahhh.
7/3/08
I really love teaching. I love the start of the school year. The anticipation of what the year will unfold to be. I love the smell of my classroom. I love my students/kids.
But I feel as though I barely made it to this summer. I love summer break. It is my time to reenergize.
As if to prove I barely made it to the end of the school year . . .I went to the doctor this week. I have whopping cough, a sinus infection and I need to get a chest xray to make sure I don't have pnemonia. My knee is floating (what??). I had a pelvic shift and my kneecap decided to start sliding around due to decrease of muscle of my quad. So, when I say, I can't take much more, maybe you understand.
Actually. . . despite all this, I am feeling better. I don't have to worry about school stuff, lesson planning and grading. I don't have to worry about missing out on some major event of Kath's or Alex's. I am coughing up a lung when I try to put the last of my garden in, or when I try to sing Kath's nite-nite songs, but slowly I can feel some of my brains coming back to roost. I am still not sleeping right and Dr Orsi said this is a concern. He mentioned how the Dept. of Defense has done studies and they know that if you deprive a man of sleep for three days you can kill him. So . . .I best get some rest or he may put me on something (no thanks). I fall asleep ok but then I wake up all night, every hour or two, sometimes for the coughing, sometimes because Lucy needs to pee on the stairs on the way to the door, sometimes because I want to make sure Nick is in, sometimes because I know Roger is out working already. Then during the day it is a continual flow of taking care of business. At 10:30 tonight I washed my floors. Why? Because they needed it, I have no other time where NO ONE will step on them, and they were so gross I couldn't put them off for another second.
I am telling you this because . . .mom of a child who has a disability who may be reading this. . .you need to know that some months are going to be crazy. Some days are insane. Sometimes you don't get 'things done' and you just need to reprioritize and figure out what is important. Easier said than done. Obviously, or I wouldn't be so sick. But I am learning. Erma Bombeck wrote that she wished she played more and didn't worry about the house. That is hard when three different therapist come into my house each week, two of them twice a week, and I know that they see the same things cluttering week after week. And crud in the corners. And mystery stains on the rugs.
But . . .I decided that when Kath goes down for a nap, if I can get Alex to snuggle, we all sleep (however that doesn't happen often enough). I sat on the kitchen floor Sunday with Kath when she decided to 'talk'-- she rambled and rambled-very expressively. She doesn't wait for food to be cooked. It took me 2 hours to make a pot of coffee (AHHH) and breakfast that morning, but it meant so much. She strung sounds together, she told a story. I took Alex to the movies Wed (Crossgates has Free Family Movies at 10 AM for the summer). I should have been going for my chest xray, but a promise is a promise. (I was going to go afterward but I needed to get home to take Kath off Roger's hands so he could go back to the dentist to get his crown fixed.)
Everyday I have to remind myself to stop and not think of it as 'lowering my expectations' as to what I will get done, but rather slowing the pace of the world in which my children live. So when the boys come home and they sit to talk after dinner, I sit. The dishes will get done sometime.
I am not in the same place I was in February. A mom wrote to the list serve and she was beside herself with guilt and fear-she just got the diagnosis of CP. As much as I still feel blown away at times, and fearful and guilt ridden, I see how I have made a snail's progress towards getting back to inhaling (except not too deeply because the whooping starts up). I don't know if Roger feels as though the stroke was my fault, I don't know that he realizes it fully, but one day he mentioned how we could never have another child because the same thing could happen. I guess it is. But as angry as I feel for him tossing such a statement at me (and probably forgetting it), he is right. We don't know why the O2 shut off and caused her stroke, but it was the placenta and the placenta is my territory . . . And since he doesn't talk to much, I jump to the worst ideas and thoughts.
Anyway. I am working on the healing aspect. The getting healthy, working on losing weight (journaling about it), trying to regain control of my little spot here. Everyday is therapy and working on Kath, not just when Sue, Liz or Laurie are here. Not just when we drive out to East Berne to hippotherapy. Each day. Every activity.
And I have three other children.
My writing has taken a backburner again, but I think I am rebounding. I am goals moderator for the writers' forum for this month again. I am reviewing three books for a teachers and librarians resource publication. I am writing here.
Now after all the me stuff let me give some highlights of the week.
Saturday- We went to a co-worker/friend of Roger's house who has a daughter Alex's age for the little girl's birthday party. Alex was thrilled to play with someone her own age. Saturday night Chris and I watched Robin Hood (that is our Chris and mom time, every Saturday during BBC Robin Hood Season).
Sunday Chris took Alex to see Wall-ee, they loved it!
Monday-OT with Laurie. Kath is working on getting to know Laurie, so Laurie is doing playing and encouraging activities to build her trust and bond with Kath. Alex is playing 'library.' She made library cards and set books about the house for me to 'buy' with my card, as long as I returned them (have to do that to some REAL library materials!).
Tuesday Kath had PT with Sue and did great work. Took a nap and woke up sneezing, running nose and miserable. She signed and tried to say "I want. . . " and mimiced Liz on several words. Hazah!
Wed-day Kath woke up at. .. gee was it 3:30? Miserable. Day was cranky. Alex and I went to the movies and lunch at Johny Rockets.
Thursday I cancelled PT and speech to take Kath to the doctor. Wed-day night she was writhing around, crying, pulling her ear and miserable. At the doctor's--no sign of anything other than a running nose. (I wonder if they think I make this up 'Here she comes again-she must need to talk to an adult!')Alex and Roger went back to her little friend's house and played while Roger had a meeting. Chris and Abbi came home tonight, Abbi made cookies with Alex while I put Kath to sleep.
We didn't even realize tomorrow is the 4th of July. eish. So, in honor of the day . . I might finally have time to get my xray. We might also drive out to Lee Outlets to get Kath new shoes and sandals since her old ones are getting too small and the outlet has them for half what I would pay at a local store!
Well, good night. Tired, maybe I will sleep through the night. :-) Gotta love summer nights.
*** This was written but not posted on July 3
I really love teaching. I love the start of the school year. The anticipation of what the year will unfold to be. I love the smell of my classroom. I love my students/kids.
But I feel as though I barely made it to this summer. I love summer break. It is my time to reenergize.
As if to prove I barely made it to the end of the school year . . .I went to the doctor this week. I have whopping cough, a sinus infection and I need to get a chest xray to make sure I don't have pnemonia. My knee is floating (what??). I had a pelvic shift and my kneecap decided to start sliding around due to decrease of muscle of my quad. So, when I say, I can't take much more, maybe you understand.
Actually. . . despite all this, I am feeling better. I don't have to worry about school stuff, lesson planning and grading. I don't have to worry about missing out on some major event of Kath's or Alex's. I am coughing up a lung when I try to put the last of my garden in, or when I try to sing Kath's nite-nite songs, but slowly I can feel some of my brains coming back to roost. I am still not sleeping right and Dr Orsi said this is a concern. He mentioned how the Dept. of Defense has done studies and they know that if you deprive a man of sleep for three days you can kill him. So . . .I best get some rest or he may put me on something (no thanks). I fall asleep ok but then I wake up all night, every hour or two, sometimes for the coughing, sometimes because Lucy needs to pee on the stairs on the way to the door, sometimes because I want to make sure Nick is in, sometimes because I know Roger is out working already. Then during the day it is a continual flow of taking care of business. At 10:30 tonight I washed my floors. Why? Because they needed it, I have no other time where NO ONE will step on them, and they were so gross I couldn't put them off for another second.
I am telling you this because . . .mom of a child who has a disability who may be reading this. . .you need to know that some months are going to be crazy. Some days are insane. Sometimes you don't get 'things done' and you just need to reprioritize and figure out what is important. Easier said than done. Obviously, or I wouldn't be so sick. But I am learning. Erma Bombeck wrote that she wished she played more and didn't worry about the house. That is hard when three different therapist come into my house each week, two of them twice a week, and I know that they see the same things cluttering week after week. And crud in the corners. And mystery stains on the rugs.
But . . .I decided that when Kath goes down for a nap, if I can get Alex to snuggle, we all sleep (however that doesn't happen often enough). I sat on the kitchen floor Sunday with Kath when she decided to 'talk'-- she rambled and rambled-very expressively. She doesn't wait for food to be cooked. It took me 2 hours to make a pot of coffee (AHHH) and breakfast that morning, but it meant so much. She strung sounds together, she told a story. I took Alex to the movies Wed (Crossgates has Free Family Movies at 10 AM for the summer). I should have been going for my chest xray, but a promise is a promise. (I was going to go afterward but I needed to get home to take Kath off Roger's hands so he could go back to the dentist to get his crown fixed.)
Everyday I have to remind myself to stop and not think of it as 'lowering my expectations' as to what I will get done, but rather slowing the pace of the world in which my children live. So when the boys come home and they sit to talk after dinner, I sit. The dishes will get done sometime.
I am not in the same place I was in February. A mom wrote to the list serve and she was beside herself with guilt and fear-she just got the diagnosis of CP. As much as I still feel blown away at times, and fearful and guilt ridden, I see how I have made a snail's progress towards getting back to inhaling (except not too deeply because the whooping starts up). I don't know if Roger feels as though the stroke was my fault, I don't know that he realizes it fully, but one day he mentioned how we could never have another child because the same thing could happen. I guess it is. But as angry as I feel for him tossing such a statement at me (and probably forgetting it), he is right. We don't know why the O2 shut off and caused her stroke, but it was the placenta and the placenta is my territory . . . And since he doesn't talk to much, I jump to the worst ideas and thoughts.
Anyway. I am working on the healing aspect. The getting healthy, working on losing weight (journaling about it), trying to regain control of my little spot here. Everyday is therapy and working on Kath, not just when Sue, Liz or Laurie are here. Not just when we drive out to East Berne to hippotherapy. Each day. Every activity.
And I have three other children.
My writing has taken a backburner again, but I think I am rebounding. I am goals moderator for the writers' forum for this month again. I am reviewing three books for a teachers and librarians resource publication. I am writing here.
Now after all the me stuff let me give some highlights of the week.
Saturday- We went to a co-worker/friend of Roger's house who has a daughter Alex's age for the little girl's birthday party. Alex was thrilled to play with someone her own age. Saturday night Chris and I watched Robin Hood (that is our Chris and mom time, every Saturday during BBC Robin Hood Season).
Sunday Chris took Alex to see Wall-ee, they loved it!
Monday-OT with Laurie. Kath is working on getting to know Laurie, so Laurie is doing playing and encouraging activities to build her trust and bond with Kath. Alex is playing 'library.' She made library cards and set books about the house for me to 'buy' with my card, as long as I returned them (have to do that to some REAL library materials!).
Tuesday Kath had PT with Sue and did great work. Took a nap and woke up sneezing, running nose and miserable. She signed and tried to say "I want. . . " and mimiced Liz on several words. Hazah!
Wed-day Kath woke up at. .. gee was it 3:30? Miserable. Day was cranky. Alex and I went to the movies and lunch at Johny Rockets.
Thursday I cancelled PT and speech to take Kath to the doctor. Wed-day night she was writhing around, crying, pulling her ear and miserable. At the doctor's--no sign of anything other than a running nose. (I wonder if they think I make this up 'Here she comes again-she must need to talk to an adult!')Alex and Roger went back to her little friend's house and played while Roger had a meeting. Chris and Abbi came home tonight, Abbi made cookies with Alex while I put Kath to sleep.
We didn't even realize tomorrow is the 4th of July. eish. So, in honor of the day . . I might finally have time to get my xray. We might also drive out to Lee Outlets to get Kath new shoes and sandals since her old ones are getting too small and the outlet has them for half what I would pay at a local store!
Well, good night. Tired, maybe I will sleep through the night. :-) Gotta love summer nights.
*** This was written but not posted on July 3
Friday, June 27, 2008
6 Month Eval, Great Strides, End of School Year, more Hippostuff, another tick and two chipped teeth
Ah-- another boring week!
I wish.
I will start with the eval. Great. We made great goals for the next 6 months that if Kath continues the path she is on, she should have no problem reaching them. One was getting better balance--that should help the chipped teeth. I will get to that. She is like a different child from 6 months ago. Quite the change, quite the work.
Our team of therapists continue to give us great ideas to work with and on, we would be lost without them. Welcome to Laurie, our newest member who does the OT.
School ended. Technically it ended Thursday--but I still had grades to turn in today and I need to go back and clean my room. Roger had graduation today but he goes back Monday for conclave--one of his very own brain childs to reflect on the year. (I think brain childs is a new word or phrase I created it!)I am so glad that we are 'off' now. I think I just made it. My stress seemed to be starting to overtake me. I was having problems with sleeping-but it became ridiculous this week. I had canker sores. I had headaches. I had chest pains. I am so incredibly tired--but as I said--sleeping is impossible. Hopefully that will change.
I am looking forward to trying to regain control of my stress eating (she says AFTER eating the chocolate!), exercising and of course writing. And reading. Our reading contest continues--more at another time . . . .
The girls had horse stuff today. Alex got to brush and feed her horse and another horse too, in addition to riding. She learned how to 'steer' and Christine said it won't be long before she can ride on her own ( I am hoping 'long' is a ways off . . .;-))
Kath was tired today. I worked this AM and then we ran chores so I thought she would nap in the car but she didn't really so today she slouched a lot and had to work real hard. Liz (Horsey Liz)said that Kath was great because she wouldn't give up. That was great to hear since that is something she does need to improve on for regular, old, on the ground therapies. I watched as she slouched and fought like heck to put rings on the cone--if that were here at home, she would have gotten up and walked away! She didn't give up though. She gets so excited when she sees the horses-- it so fun to watch and Alex has a smile from ear to ear for the whole session.
Kath had another tick on her. Ugh. I was a coward at first and called Roger (he was chaperoning his graduation), Maddy and almost Nick. I also almost just took her to the doctor. I am so afraid of it breaking off inside her, but after that happened the last time when Roger did it, I finally screwed up my courage and took care of it. I doused it in alcohol and then plucked it off. Her skin was red before I got it off but now it is a little red dot. Whew. She needs to wear a necklace of repellant.
Ah--today she fell on the tiled front foyer before Robin left us for the summer. Since Kath just buried her head in my shoulder, I thought she was okay and just shaken up. Especially since there wasn't any blood. On our way to hippotherapy I turned in the car (I was stopped waiting for bagels) and saw her lip was swollen and cut underneath. Then tonight when she took her bath to wash off her own whipped topping bath . . .I saw she chipped her two front teeth. Ugh. Just a little, but I hope they don't bruise. I hope she didn't damage any nerves. It is not like I can stop this whirlwind of activity from moving and trying new things, but she is just so clutsy and unbalanced that she does damage to herself. Scares me. Balance. Need to work on balance.
I will work on my storytelling--after I get some rest. Missed a friend's child's/former student grad party tonight. :-( Didn't realize what time it started and the kids were pretty beat after horse-day. Not to mention Roger was in bed by 7 (party starting time) and I am looking forward to sitting on the couch and trying to stay away enough to read at least one chapter of The Historian. Gee, I remember when I read a book at a sitting. Now I strive for a chapter--a page, a paragraph. Anyone want to be on my team for the reading competition??? :-) More lata.
Nite.
My apologies for any errors.
I wish.
I will start with the eval. Great. We made great goals for the next 6 months that if Kath continues the path she is on, she should have no problem reaching them. One was getting better balance--that should help the chipped teeth. I will get to that. She is like a different child from 6 months ago. Quite the change, quite the work.
Our team of therapists continue to give us great ideas to work with and on, we would be lost without them. Welcome to Laurie, our newest member who does the OT.
School ended. Technically it ended Thursday--but I still had grades to turn in today and I need to go back and clean my room. Roger had graduation today but he goes back Monday for conclave--one of his very own brain childs to reflect on the year. (I think brain childs is a new word or phrase I created it!)I am so glad that we are 'off' now. I think I just made it. My stress seemed to be starting to overtake me. I was having problems with sleeping-but it became ridiculous this week. I had canker sores. I had headaches. I had chest pains. I am so incredibly tired--but as I said--sleeping is impossible. Hopefully that will change.
I am looking forward to trying to regain control of my stress eating (she says AFTER eating the chocolate!), exercising and of course writing. And reading. Our reading contest continues--more at another time . . . .
The girls had horse stuff today. Alex got to brush and feed her horse and another horse too, in addition to riding. She learned how to 'steer' and Christine said it won't be long before she can ride on her own ( I am hoping 'long' is a ways off . . .;-))
Kath was tired today. I worked this AM and then we ran chores so I thought she would nap in the car but she didn't really so today she slouched a lot and had to work real hard. Liz (Horsey Liz)said that Kath was great because she wouldn't give up. That was great to hear since that is something she does need to improve on for regular, old, on the ground therapies. I watched as she slouched and fought like heck to put rings on the cone--if that were here at home, she would have gotten up and walked away! She didn't give up though. She gets so excited when she sees the horses-- it so fun to watch and Alex has a smile from ear to ear for the whole session.
Kath had another tick on her. Ugh. I was a coward at first and called Roger (he was chaperoning his graduation), Maddy and almost Nick. I also almost just took her to the doctor. I am so afraid of it breaking off inside her, but after that happened the last time when Roger did it, I finally screwed up my courage and took care of it. I doused it in alcohol and then plucked it off. Her skin was red before I got it off but now it is a little red dot. Whew. She needs to wear a necklace of repellant.
Ah--today she fell on the tiled front foyer before Robin left us for the summer. Since Kath just buried her head in my shoulder, I thought she was okay and just shaken up. Especially since there wasn't any blood. On our way to hippotherapy I turned in the car (I was stopped waiting for bagels) and saw her lip was swollen and cut underneath. Then tonight when she took her bath to wash off her own whipped topping bath . . .I saw she chipped her two front teeth. Ugh. Just a little, but I hope they don't bruise. I hope she didn't damage any nerves. It is not like I can stop this whirlwind of activity from moving and trying new things, but she is just so clutsy and unbalanced that she does damage to herself. Scares me. Balance. Need to work on balance.
I will work on my storytelling--after I get some rest. Missed a friend's child's/former student grad party tonight. :-( Didn't realize what time it started and the kids were pretty beat after horse-day. Not to mention Roger was in bed by 7 (party starting time) and I am looking forward to sitting on the couch and trying to stay away enough to read at least one chapter of The Historian. Gee, I remember when I read a book at a sitting. Now I strive for a chapter--a page, a paragraph. Anyone want to be on my team for the reading competition??? :-) More lata.
Nite.
My apologies for any errors.
Sunday, June 22, 2008
Hippotherapy
Friday was our second hippotherapy session.
Kath was scared the first time, you may be able to tell by the pictures. She screamed and freaked for the first few minutes. But once I walked next to the horse (Mark) and held onto her, she settled down and after awhile she held onto the handle with her right hand. She pet the horse and said 'stop' and 'go.' She even bounced her encouragement to Mark. I only have two pictures of her on the horse and that was before she actually became relaxed and enjoyed it. I took more this week and may be picking them up tomorrow.
This week there was no freaking. She has been signing 'horse' for the past two weeks. She allowed Liz to put the helmet on easily, as well as the belt. She even went easily on the horse and went without me! She worked on putting rings on a cone with Mark walking--so there was a lot of bouncing and balancing. She held onto stuffed animals (frogs) while the horse walked and she even sat on the horse backwards and leaned on both hands to keep her balance--that is a good strengthening execise. I was able to see how hard Kath worked, and she lasted longer this week, but I could see how hard it was for her and how hard she had to work to maintain her balance. She is amazing.
Alex had a sibling lesson and she was delighted. She knew that she would have to learn how to take care of the horse, she rode Babe, and not just enjoy the ride. She was willing to do that, but this time she just got to feed him a couple of carrots afterward. before we left the house to drive to EBCPT she said, "I am so excited, I am jumping out of my skin!" She cracks me up.
Well, that is it for tonight. Hope you enjoy the pictures!
Kath was scared the first time, you may be able to tell by the pictures. She screamed and freaked for the first few minutes. But once I walked next to the horse (Mark) and held onto her, she settled down and after awhile she held onto the handle with her right hand. She pet the horse and said 'stop' and 'go.' She even bounced her encouragement to Mark. I only have two pictures of her on the horse and that was before she actually became relaxed and enjoyed it. I took more this week and may be picking them up tomorrow.
This week there was no freaking. She has been signing 'horse' for the past two weeks. She allowed Liz to put the helmet on easily, as well as the belt. She even went easily on the horse and went without me! She worked on putting rings on a cone with Mark walking--so there was a lot of bouncing and balancing. She held onto stuffed animals (frogs) while the horse walked and she even sat on the horse backwards and leaned on both hands to keep her balance--that is a good strengthening execise. I was able to see how hard Kath worked, and she lasted longer this week, but I could see how hard it was for her and how hard she had to work to maintain her balance. She is amazing.
Alex had a sibling lesson and she was delighted. She knew that she would have to learn how to take care of the horse, she rode Babe, and not just enjoy the ride. She was willing to do that, but this time she just got to feed him a couple of carrots afterward. before we left the house to drive to EBCPT she said, "I am so excited, I am jumping out of my skin!" She cracks me up.
Well, that is it for tonight. Hope you enjoy the pictures!
Wednesday, June 18, 2008
OT, Hearing Test, Pulled Teeth, Walking Backwards,Car Issues (still)! And Tim Russert.
So . . .yesterday Katharina had her first OT appointment with Laurie and Kath was her usual charming self. She does this cute scrunchy-face smile that Nick used to do. She was exhausted by the time it was over; she worked hard extracting herself from couch cushions, pulling apart interlocking toys and assorted other games. She does really well with new people, especially if Alex is around (and Robin or me).
Today began with Roger taking off from school to take Chris to the oral surgeon. He had ALL FOUR wisdom teeth pulled! I thought they only did one side at a time so that eating could resume . . .I thought wrong. He had IV sedation and doesn't remember telling Roger "I like IV." Goofball. He is in pain but we are alternating the medicine so that hopefully will be contained quickly.
Meanwhile at almost the same time--Kath had her hearing test at Albany Med. The audiologist loved her and worked really hard to get good info (I am sure she always works hard-not just for those she likes). She heard tones I was not quite sure I heard. She moved her head in the correct direction each time. The earphones were put in her ears next and she did great for that as well. Then she had a test for other parts of her ear/hearing and did well until the end when she was tired and wiggling, so the machine kept resetting. But Leslie, the audiologist, was so impressed with how well-behaved Kath was anyway. Alex of course was the fantastic big sister/mom helper she always is. Kath's hearing is all within normal ranges, as far as they can test with her age and wiggliness. I have been so impressed by the people I have met on this journey and this lady was another wonderful soul.
After this I decided to finally take care of the blood work for stroke indicators. I miswrote last time when I said that Dr. Foster wrote the script-he authorized it but Dr Schottler (ped) was the actually writer. The script was FULL of tests. They needed 19 mls of blood! After they took the needle out the first time, I assumed they were done. But, alas, no. (I guess they had trouble with the spot and that is why they took the needle out.) They said they needed 15 more mls. I asked how many they took with the first needle and they said 4. I almost started to cry. I asked if we could come back and finish another day, but they said it had to be sent out the same day/shipment. Ugh. So this time they worked on taking it out of her hand. She screamed, but it was mostly anger, although when they had to reposition to rebleed it, it was from pain. She was a trooper and was asleep before we were out of Albany.
Wish I could have been too.
She is starting to bruise up though. She doesn't seem to have the same pain sensors, but that will be a writing for another time.
I have been putting this bloodwork off because I am an idiot. Because I felt as though 1) the reason she had a stroke was due to me and since she is not in utero anymore, then she couldn't possibly have another stroke; 2) I was/am so overwhelemed I didn't think I could handle anything else (as if having the test means she will have one); 3) I am afraid of what the tests will tell me. And afraid I can't deal . . .with one more thing.
While waiting to get the test there was this little girl and her family in the lab waiting room. They asked me a ton of questions about Kath and told me their daughter who was the size of a 9 month old-and running around--was actually 2 and just very tiny. She was getting tested to see what was up. The mom -who I never saw before- told me that I was a good mom for taking care and making sure I was doing everything I could to help Kath. Mind you, I was near tears the whole day. I didn't admit to her that I held this script in my pocketbook for a month and that I was petrified of having it done. But from where ever this woman got her strength and however she shared it--I thank God. Little rains of grace at times of fragility. It gave me the strength to stay put (and not delay it anymore), to hold and sing to Kath, to not cry, to try healing intentions, to breathe. I hope I somehow gave that woman something, but I doubt it. Maybe the next time I will be the strength when someone else needs it.
On my way home, I had to drop my car off at the shop AGAIN. The last time they got the wrong part--we have been going crazy with this for the last two weeks, at least. First they didn't know why the car was there--even though I had spoken with someone the week before and requested an appointment AND left a note in the car. Next day they didn't have my number . . .once again on the note. Then wrong part. Then no part. Now hopefully tomorrow will end it-they will fix it and we will be set. This place has been great in the past, so I think this is just bad timing. My stress is so high with the end of year and all Kath's stuff and then Roger signing up for retreats and classes even though I asked for peace this summer and house projects to be worked on. Continued money concerns. Worrying about financial aid for the boys for school. Grandpa in the hospital. Dad having treatment. Yada yada yada. So although a car is stupid in the grand scheme of Life, it is one more stressor in a stressed out person's life. :-)
Tonight . . .Kath decided to start WALKING BACKWARDS. As if watching her negotiate walking fowards isn't harrowing enough, now she is walking backwards and laughing with glee as she does it. How this girl trips LESS going backwards is beyond me. Ah. :-)
I have been trying to write more this week. I have worked on my story some and I need a lot more time with it, but it is going. I am also trying to read-I have a couple of books Maddy lent me and a couple from the libe on Kath stuff and homeschooling. I also have some classic lit books that I feel I must read, though it would be much better for me . . .if I didn't KEEP FALLING ASLEEP each time I started to read Ivanhoe!!! Although this year is not quite over I have been getting excited thoughts of ideas to teach for next year. I guess when that stops happening I will know it is time to leave teaching.
Alex told me when I tucked her in that 1-she will remember me for ever (not sure what she knows . . .but I told her that was good anyway ;-)); and 2- she will miss me when she is 'growd up' (I told her not to worry, she could build her house on our property, so I could hang out all the time with my grandkids and I could still cuddle with her. She corrected me--'snuggle, momma.')
She came down this morning 'All dressed. I wanted to try something new!' She was wearing red socks, purple stretch pants that were too short for her, a blue princess shirt with a her white tank t-shirt ON TOP of it. Ah, this girl is such a little fashion bug. And in case you are wondering . . .no, I did not allow her to wear that to the hospital today. She has the confidence for it, I do not. :-) Anyway, she spilled yogart on it. :-)
Love my crazy life. Love my crazy family.
PS. The death of Tim Russert is such a sad marker. What a wonderful human being we are now deprived of; a good man, great father and critical thinking journalist. When the world loses such a deep souled person, it seems only right that the rest of us step up our game to try to help the make up for the loss. To keep the world on its correct spin.
Today began with Roger taking off from school to take Chris to the oral surgeon. He had ALL FOUR wisdom teeth pulled! I thought they only did one side at a time so that eating could resume . . .I thought wrong. He had IV sedation and doesn't remember telling Roger "I like IV." Goofball. He is in pain but we are alternating the medicine so that hopefully will be contained quickly.
Meanwhile at almost the same time--Kath had her hearing test at Albany Med. The audiologist loved her and worked really hard to get good info (I am sure she always works hard-not just for those she likes). She heard tones I was not quite sure I heard. She moved her head in the correct direction each time. The earphones were put in her ears next and she did great for that as well. Then she had a test for other parts of her ear/hearing and did well until the end when she was tired and wiggling, so the machine kept resetting. But Leslie, the audiologist, was so impressed with how well-behaved Kath was anyway. Alex of course was the fantastic big sister/mom helper she always is. Kath's hearing is all within normal ranges, as far as they can test with her age and wiggliness. I have been so impressed by the people I have met on this journey and this lady was another wonderful soul.
After this I decided to finally take care of the blood work for stroke indicators. I miswrote last time when I said that Dr. Foster wrote the script-he authorized it but Dr Schottler (ped) was the actually writer. The script was FULL of tests. They needed 19 mls of blood! After they took the needle out the first time, I assumed they were done. But, alas, no. (I guess they had trouble with the spot and that is why they took the needle out.) They said they needed 15 more mls. I asked how many they took with the first needle and they said 4. I almost started to cry. I asked if we could come back and finish another day, but they said it had to be sent out the same day/shipment. Ugh. So this time they worked on taking it out of her hand. She screamed, but it was mostly anger, although when they had to reposition to rebleed it, it was from pain. She was a trooper and was asleep before we were out of Albany.
Wish I could have been too.
She is starting to bruise up though. She doesn't seem to have the same pain sensors, but that will be a writing for another time.
I have been putting this bloodwork off because I am an idiot. Because I felt as though 1) the reason she had a stroke was due to me and since she is not in utero anymore, then she couldn't possibly have another stroke; 2) I was/am so overwhelemed I didn't think I could handle anything else (as if having the test means she will have one); 3) I am afraid of what the tests will tell me. And afraid I can't deal . . .with one more thing.
While waiting to get the test there was this little girl and her family in the lab waiting room. They asked me a ton of questions about Kath and told me their daughter who was the size of a 9 month old-and running around--was actually 2 and just very tiny. She was getting tested to see what was up. The mom -who I never saw before- told me that I was a good mom for taking care and making sure I was doing everything I could to help Kath. Mind you, I was near tears the whole day. I didn't admit to her that I held this script in my pocketbook for a month and that I was petrified of having it done. But from where ever this woman got her strength and however she shared it--I thank God. Little rains of grace at times of fragility. It gave me the strength to stay put (and not delay it anymore), to hold and sing to Kath, to not cry, to try healing intentions, to breathe. I hope I somehow gave that woman something, but I doubt it. Maybe the next time I will be the strength when someone else needs it.
On my way home, I had to drop my car off at the shop AGAIN. The last time they got the wrong part--we have been going crazy with this for the last two weeks, at least. First they didn't know why the car was there--even though I had spoken with someone the week before and requested an appointment AND left a note in the car. Next day they didn't have my number . . .once again on the note. Then wrong part. Then no part. Now hopefully tomorrow will end it-they will fix it and we will be set. This place has been great in the past, so I think this is just bad timing. My stress is so high with the end of year and all Kath's stuff and then Roger signing up for retreats and classes even though I asked for peace this summer and house projects to be worked on. Continued money concerns. Worrying about financial aid for the boys for school. Grandpa in the hospital. Dad having treatment. Yada yada yada. So although a car is stupid in the grand scheme of Life, it is one more stressor in a stressed out person's life. :-)
Tonight . . .Kath decided to start WALKING BACKWARDS. As if watching her negotiate walking fowards isn't harrowing enough, now she is walking backwards and laughing with glee as she does it. How this girl trips LESS going backwards is beyond me. Ah. :-)
I have been trying to write more this week. I have worked on my story some and I need a lot more time with it, but it is going. I am also trying to read-I have a couple of books Maddy lent me and a couple from the libe on Kath stuff and homeschooling. I also have some classic lit books that I feel I must read, though it would be much better for me . . .if I didn't KEEP FALLING ASLEEP each time I started to read Ivanhoe!!! Although this year is not quite over I have been getting excited thoughts of ideas to teach for next year. I guess when that stops happening I will know it is time to leave teaching.
Alex told me when I tucked her in that 1-she will remember me for ever (not sure what she knows . . .but I told her that was good anyway ;-)); and 2- she will miss me when she is 'growd up' (I told her not to worry, she could build her house on our property, so I could hang out all the time with my grandkids and I could still cuddle with her. She corrected me--'snuggle, momma.')
She came down this morning 'All dressed. I wanted to try something new!' She was wearing red socks, purple stretch pants that were too short for her, a blue princess shirt with a her white tank t-shirt ON TOP of it. Ah, this girl is such a little fashion bug. And in case you are wondering . . .no, I did not allow her to wear that to the hospital today. She has the confidence for it, I do not. :-) Anyway, she spilled yogart on it. :-)
Love my crazy life. Love my crazy family.
PS. The death of Tim Russert is such a sad marker. What a wonderful human being we are now deprived of; a good man, great father and critical thinking journalist. When the world loses such a deep souled person, it seems only right that the rest of us step up our game to try to help the make up for the loss. To keep the world on its correct spin.
Monday, June 16, 2008
Let me try to catch you up . . .
Well, in my head I have been writing. But the reality is that I have not. Let's start with what I thought would be a great title "The tick, the hives and the neurologist" A bit like a badly written teen horror flick, but in reality another week in our lives. The Tuesday after my last entry I found a tick behind Kath's ear while giving her a bath. Before Roger parked his car I was yelling for him to come up and get the tick out. :) Brave mamma. Then that Wed and Thursday I woke up and began having hives. Not really bad ones, just enough for me to say, "Hey, why am I suddenly scratching my skin off? Ohhhhh . . ." Then Kath had her follow up neurologist appointment. It began with the doctor coming to call Kath (love that he does it himself!) and not realizing which one was his patient (Alex or Kath). He watched her play and was amazed at her progress. I asked him about 1000 questions and he patiently answered them all--even when the nurse came in and began to hustle around to rush him "There are more patients." He maintained focus on Kath and would not allow himself budged and for that I will forever be thankful and sure I chose the right neurologist (aside from the tons of other things he says and does "don't read the internet, it will only freak you out," "I can't give you a diagnosis, no one knows how kids respond and heal from a stroke; don't underestimate her.")
So, he told me that her stroke affected her left paritial lobe, possible brain stem IF hearing has been compromised, but he did not think so. She has something called pachygyria-there is an area of tissue that didn't receive oxygen and that has a potential for epilipsy. That area has a tissue loss that now contains fluid. When he read the report from the MRI, he said the technician/reader saw possible 'mirror damage' on the right side-which would indicate the stroke impacted the right side of her brain as well. He quickly assured me that he didn't not see that. He gave me a script for bloodwork--to see how likely she may be to have another stroke. I can get a copy of the MRI on CDROM from Albany Med (eish). He said that even though her risks for seizures are 10x more likely than another kid, he is not worried and therefore I am not to either. He suggests that we see a doctor of Physical Medicine and Rehab about the possibilty of scholiosis.
Chris has come home from school and will be getting his wisdom teeth out Wed.
Nick is on his way home from Tennesse from Bonoroo a music festival.
Alex is doing great. (More later.)
Kath is mobiling around and starting to work on more speaking. We have been spreading 40 yeards (may not sound like much but let me tell you!!!) of dirt and creating a garden. She is all over the backyard with us, walking and falling and getting up and chasing after us. We have started to take her on walks up the driveway/hill and around the circle. She loves it! Doesn't want to hold hands, wants to turn and go where she wants. She is a hellion with shopping now. She has started to say "ice" for ice pops (she wants those for breakfast, lunch and dinner). She is saying "yes" and signing it and nodding her head. She is also saying a couple of other words which escape me right now. I don't think anyone else would recognize them as words except Alex, Liz, Sue and I. Maybe. :-)
She had hippotherapy the Friday before this last one. After the initial freak out of the helmet, the belt and the getting put on a large animal, she loved it. Liz (horse/physical therapist, not to be confused with Speech therapist Liz) allowed me to walk next to her and hold her leg as she walked around on the horse. She wouldn't put her hands anywhere near the animal at first, then she used her RIGHT hand to hold on! Then she actually began to pet Marc (the horse) and tell him to Stop and Go. She bounced in her seat too. Alex got to ride too and she was thrilled.
The whole weekend anytime I asked her if she wanted to play--Kath would sign "horse." Now when she wants to make me laugh she signs 'horse' and I say, "No! There's no horse here!" She laughs and signs it again.
Today she managed to grab a magic marker. She used to play with them and work on her fine motor skills by taking the top off and putting it back on. Her hands would be covered but it was great fun. Well, I stopped her from playing with them because she wrote on something she shouldn't have--don't remember (who had the stroke??). Today she found the marker and disappeared into the playroom. I found her standing in the doorway working the cap on and off. She realized I was there and had the guiltiest look. I realized then that this lil girl is possibly even smarter than I thought-she knew I didn't want her to have it, so she hid it!!! Funny, funny.
Next week is her 6 month evaluation for early intervention--all team members will gather and we will make our plans for Kath for the next 6 months--PT, Speech and now OT. Sue and Speech Liz have already told me that as they looked at their first evals they are so amazed-that it is like looking at a different kid. Sue finished her test today and said that Kath was at about 12-14 months developmentally now. She has shown remarkable progress. She is an amazing girl.
School will be crazy for the next two weeks so I may not be as good as I should be--but I have 5 rolls of pictures waiting to get picked up-of the hippotherapy and assorted gardening and so on. Kath starts OT tomorrow with Laurie and then speech in the afternoon. Wed she has a hearing test at Albany Med. Thursday speech. Friday hippotheray. I have been having car problems--car is in the shop getting a new axle and something else, who knows? Brain stuff is easier to understand! And mostly covered by insurance. (gulp)
So, he told me that her stroke affected her left paritial lobe, possible brain stem IF hearing has been compromised, but he did not think so. She has something called pachygyria-there is an area of tissue that didn't receive oxygen and that has a potential for epilipsy. That area has a tissue loss that now contains fluid. When he read the report from the MRI, he said the technician/reader saw possible 'mirror damage' on the right side-which would indicate the stroke impacted the right side of her brain as well. He quickly assured me that he didn't not see that. He gave me a script for bloodwork--to see how likely she may be to have another stroke. I can get a copy of the MRI on CDROM from Albany Med (eish). He said that even though her risks for seizures are 10x more likely than another kid, he is not worried and therefore I am not to either. He suggests that we see a doctor of Physical Medicine and Rehab about the possibilty of scholiosis.
Chris has come home from school and will be getting his wisdom teeth out Wed.
Nick is on his way home from Tennesse from Bonoroo a music festival.
Alex is doing great. (More later.)
Kath is mobiling around and starting to work on more speaking. We have been spreading 40 yeards (may not sound like much but let me tell you!!!) of dirt and creating a garden. She is all over the backyard with us, walking and falling and getting up and chasing after us. We have started to take her on walks up the driveway/hill and around the circle. She loves it! Doesn't want to hold hands, wants to turn and go where she wants. She is a hellion with shopping now. She has started to say "ice" for ice pops (she wants those for breakfast, lunch and dinner). She is saying "yes" and signing it and nodding her head. She is also saying a couple of other words which escape me right now. I don't think anyone else would recognize them as words except Alex, Liz, Sue and I. Maybe. :-)
She had hippotherapy the Friday before this last one. After the initial freak out of the helmet, the belt and the getting put on a large animal, she loved it. Liz (horse/physical therapist, not to be confused with Speech therapist Liz) allowed me to walk next to her and hold her leg as she walked around on the horse. She wouldn't put her hands anywhere near the animal at first, then she used her RIGHT hand to hold on! Then she actually began to pet Marc (the horse) and tell him to Stop and Go. She bounced in her seat too. Alex got to ride too and she was thrilled.
The whole weekend anytime I asked her if she wanted to play--Kath would sign "horse." Now when she wants to make me laugh she signs 'horse' and I say, "No! There's no horse here!" She laughs and signs it again.
Today she managed to grab a magic marker. She used to play with them and work on her fine motor skills by taking the top off and putting it back on. Her hands would be covered but it was great fun. Well, I stopped her from playing with them because she wrote on something she shouldn't have--don't remember (who had the stroke??). Today she found the marker and disappeared into the playroom. I found her standing in the doorway working the cap on and off. She realized I was there and had the guiltiest look. I realized then that this lil girl is possibly even smarter than I thought-she knew I didn't want her to have it, so she hid it!!! Funny, funny.
Next week is her 6 month evaluation for early intervention--all team members will gather and we will make our plans for Kath for the next 6 months--PT, Speech and now OT. Sue and Speech Liz have already told me that as they looked at their first evals they are so amazed-that it is like looking at a different kid. Sue finished her test today and said that Kath was at about 12-14 months developmentally now. She has shown remarkable progress. She is an amazing girl.
School will be crazy for the next two weeks so I may not be as good as I should be--but I have 5 rolls of pictures waiting to get picked up-of the hippotherapy and assorted gardening and so on. Kath starts OT tomorrow with Laurie and then speech in the afternoon. Wed she has a hearing test at Albany Med. Thursday speech. Friday hippotheray. I have been having car problems--car is in the shop getting a new axle and something else, who knows? Brain stuff is easier to understand! And mostly covered by insurance. (gulp)
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