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
Friday, July 17, 2009
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
Sunday, February 22, 2009
We visited Dr Foster on Thursday. It was a week (vacation) of Roger being sick and me watching Kath like she might explode. I took the girls to the State Museum on Tuesday and we had a good time. This is part of my 'Baby-Brain-Boot-Camp.' Alex loved learning all, seeing all. We had to rush through and we never made it to the second floor or the carousal. We will be returning. Then Friday Roger came with us when we visited the Children's Museum in Saratoga. Both girls LOVED the playing--Alex said it didn't feel like a museum. And it didn't--kids were running around like crazy playing--which is what the idea was. There was a firetruck and fire station, a construction site, a bank, market, diner, trolley. It was a lot of fun. We also had a couple of therapies this week, even though it was vacation week. We had lots of play time, too.
Back to the neuro on Thursday. Turns out the polymicrogyria that Dr Rivkin (Boston)( told us is the same thing as the pachygria Dr Foster (local) told me about 9 months ago--just that well . . .they are different sounding words . . .and each doctor put a different emphasis on different parts of it. So --yes we need to be aware of seizure possibilities and we left with a prescription to fill for 'just in case.' We also will be going for another EEG so we can start monitoring her more closely for any problems she might develop--so we can head them off. Because of the injury to her brain she is more likely to develop seizures, but we are hoping she is spared this.
Dr Foster does believe that she did have a stroke--he hasn't moved away from that. Which is too bad since I was starting to feel better and move away from the picture that I have in my head of her having a stroke in utero and me not knowing it. If she hadn't had a stroke then it would have crossed off the chance of her having 'another' but that comes back on.
The damage is on both sides of the brain--only time will tell how that will impact her.
Thankfully we have witnessed her blossoming this week while we have been home with her. She is playing like a 'normal' two year-old. She role plays--gave two dolls two different voices when playing. Cares for her babies-feeds them, talks to them, holds them . . .and tells us to be quiet since they are usually going to sleep. She brings books to me and if I don't sit and read she becomes very insistant. Very. She pulls my hand and pushes it so I sit down. Tonight I was watching something on TV and she took the book and REPOSITIONED it in my hands and said "Book!" She also saw Alex playing with a little Barbie I-Pod that came in a book (Alex thinks she is hot stuff listening to excerpts of classical music on her I-Pod!), so when Alex put the I-Pod down, Kath ran over, grabbed it and RAN into the playroom with it. She was even trying to put the ear pieces in her ears. When Alex came home from dance class on Saturday, Alex performed her dances for me (Roger took her to class) and Kath stood slightly behind Al, watched her and repeated the steps . . .and 'sang' too. She is doing some pretty great stuff. I took out one of my children's book that I put away a year ago because it shows you where your child should be developmentally and she was SOOO far behind it broke my heart. But now I can see how she is delayed--but progressing. It is very motivating for our baby-brain-boot-camp. :D
I have also been able to wrap myself around the new info from the past week in a better way. Whether it is due to the sunshine--too bad it is snow again!--the vitamins--or power of intention--I have decided I will not live in fear and I won't have the family hovering in that place either. We are in a good place. We are mostly well--Roger is feeling better :-). I seem to set the tone--not to brag--but moms might know what I mean--and if I am stressed and cranky I am not only not able to think and be creative in different ways that could help Kath, but I make everyone else stressed and uptight. So, I am going to try to keep the positive feelings going and hopefully attract the good and positive. I will write more about Australia another time. "Australia??" you say. Yes, another time. :-D
There is a boy from the list-serve for Hemikids that did have a pretty serious seizure and he was on life support and is still in the hospital--since
last week, so if you could send some prayers that would be great.
And my friend Donna's Hope is still in the hospital. She developed a clot and has been working on fighting that and her protein deficiency. Please keep her and Donna and their family in your thoughts. A 14 year-old in the hospiatl is not an easy thing.
I was just painting--have some more school and writing to do--it's only 11:41PM. :-D I hope this finds you all well.
Back to the neuro on Thursday. Turns out the polymicrogyria that Dr Rivkin (Boston)( told us is the same thing as the pachygria Dr Foster (local) told me about 9 months ago--just that well . . .they are different sounding words . . .and each doctor put a different emphasis on different parts of it. So --yes we need to be aware of seizure possibilities and we left with a prescription to fill for 'just in case.' We also will be going for another EEG so we can start monitoring her more closely for any problems she might develop--so we can head them off. Because of the injury to her brain she is more likely to develop seizures, but we are hoping she is spared this.
Dr Foster does believe that she did have a stroke--he hasn't moved away from that. Which is too bad since I was starting to feel better and move away from the picture that I have in my head of her having a stroke in utero and me not knowing it. If she hadn't had a stroke then it would have crossed off the chance of her having 'another' but that comes back on.
The damage is on both sides of the brain--only time will tell how that will impact her.
Thankfully we have witnessed her blossoming this week while we have been home with her. She is playing like a 'normal' two year-old. She role plays--gave two dolls two different voices when playing. Cares for her babies-feeds them, talks to them, holds them . . .and tells us to be quiet since they are usually going to sleep. She brings books to me and if I don't sit and read she becomes very insistant. Very. She pulls my hand and pushes it so I sit down. Tonight I was watching something on TV and she took the book and REPOSITIONED it in my hands and said "Book!" She also saw Alex playing with a little Barbie I-Pod that came in a book (Alex thinks she is hot stuff listening to excerpts of classical music on her I-Pod!), so when Alex put the I-Pod down, Kath ran over, grabbed it and RAN into the playroom with it. She was even trying to put the ear pieces in her ears. When Alex came home from dance class on Saturday, Alex performed her dances for me (Roger took her to class) and Kath stood slightly behind Al, watched her and repeated the steps . . .and 'sang' too. She is doing some pretty great stuff. I took out one of my children's book that I put away a year ago because it shows you where your child should be developmentally and she was SOOO far behind it broke my heart. But now I can see how she is delayed--but progressing. It is very motivating for our baby-brain-boot-camp. :D
I have also been able to wrap myself around the new info from the past week in a better way. Whether it is due to the sunshine--too bad it is snow again!--the vitamins--or power of intention--I have decided I will not live in fear and I won't have the family hovering in that place either. We are in a good place. We are mostly well--Roger is feeling better :-). I seem to set the tone--not to brag--but moms might know what I mean--and if I am stressed and cranky I am not only not able to think and be creative in different ways that could help Kath, but I make everyone else stressed and uptight. So, I am going to try to keep the positive feelings going and hopefully attract the good and positive. I will write more about Australia another time. "Australia??" you say. Yes, another time. :-D
There is a boy from the list-serve for Hemikids that did have a pretty serious seizure and he was on life support and is still in the hospital--since
last week, so if you could send some prayers that would be great.
And my friend Donna's Hope is still in the hospital. She developed a clot and has been working on fighting that and her protein deficiency. Please keep her and Donna and their family in your thoughts. A 14 year-old in the hospiatl is not an easy thing.
I was just painting--have some more school and writing to do--it's only 11:41PM. :-D I hope this finds you all well.
Monday, February 16, 2009
Groundhog Year
Did you ever see the movie "Groundhog Day" with Bill Murray? He plays a man who has to relive the day (Groundhog's Day) until he gets it 'right.'
We must be in need of learning some lesson. I say that in an almost "I'm kidding" way.
A year ago we were told that Kath had survived an in utero stroke, had CP and assorted other issues.
This Thursday when we went to Children's Hospital in Boston we were told she may not have had a stroke, but may have something called polymicrogyria. We were also told the damage is on both sides of the brain. Dr. Rivkin said he would not be surprised if when we talk to him in 6 months we told him Kath had several seizures. He said she would probably struggle with math (so do I!). . .have a heavy ILP (need aides) . . .and he alluded to, but didn't say (though the web sites have no problem saying it) mental retardation. I asked if she would ever do his job and he said it was unlikely.(Thanks to cousin Jenn for coming with us and watching Alex while we went in for our appointment.)
That being said he also said he hoped he was wrong and we call him names in a couple of years. (ad libbing)
We are trying to understand this new info with the realization that on Thursday we will return to our local neurologist and ask him a whole bunch of questions. And possibly need to sort through more info. They also took 30 mls of blood to do genetic and other tests.
We have gotten a couple of emails from moms on the hemikids list serve who told us how their children are doing. One mom has a a fellow 2 year-old and another's is a nine year-old who is part of the gifted and talented program at her school and has never had a seizure.
While we are trying to understand this new country we have opened a door to, we look at the same little girl we held Wednesday and we know that nothing on any MRI can truly tell us Kath's limitations and expectations.
That is easier to say at certain parts of the day than others. I have struggled with hives for the past week--the pre-Boston anxiety and now the post, I assume. The week before I spent a week in a neck brace with a 'pulled' neck muscle. So, I am trying to find meaning, measure and peace.
Chris returned to school for his final semester at Bennington College yesterday. We had a great day today with the girls. We created our After Christmas/Valentine's Tree. Our live tree made it from Thanksgiving to--well, it is still with us. We brought it outside yesterday after we took off its Valentine decorations and today we decorated it for the birds and squirrels. Paper towel rolls cut in half and toilet paper rolls were lathered in peanut butter and bird seed with bright red yarn strung through the centers, then hung on our tree that is now residing on our back deck. The girls loved making the bird feeders for their feathered friends and we have bird seed every where. We played outside, made ice cream sundaes, drank cocoa, read, colored and played. It was a good day.
Kath had therapy with the teacher for special ed--Stacey. Stacey said that although she notices that Kath cannot always point to objects when requested and struggles with puzzles, she wouldn't deem her mentally retarded . . .especially when Kath tries to outsmart Stacey for her doll!
Apparently last week and then we saw this week, Kath was playing with a really cute doll Stacey brought that moves her arms and talks, laughs, cries. Last week when it was time for Stacey to leave--Kath hid the doll and then began to point to the dog or something else--to distract. This week she tried to keep saying no and then came over and hugged me. She really wanted to distract us from remembering the doll. Hmm... mental problems?
Dr. Rivkin mentioned memory problems, too. Well, as soon as I told Kath that Stacey was coming she was thrilled. When Stacey showed up, she immediately started to ask for the doll. Mind you, Kath sees Stacey once a week. And she also has OT. Speech. And two PT visits a week. Plus as I said a trip to Boston. Hmm... I think Kath will be breaking many expectations.
That is my prayer.
I also ask you to pray for my friend Donna. Her daughter Hope is in the PICU of Albany Med with a variety of issues that sprouted from her body forming strep viruses and since she has HLHS (hypoplastic left heart syndrome)it is a serious matter. They are both amazing people.
I hope this finds you well. Enjoy the sun!
We must be in need of learning some lesson. I say that in an almost "I'm kidding" way.
A year ago we were told that Kath had survived an in utero stroke, had CP and assorted other issues.
This Thursday when we went to Children's Hospital in Boston we were told she may not have had a stroke, but may have something called polymicrogyria. We were also told the damage is on both sides of the brain. Dr. Rivkin said he would not be surprised if when we talk to him in 6 months we told him Kath had several seizures. He said she would probably struggle with math (so do I!). . .have a heavy ILP (need aides) . . .and he alluded to, but didn't say (though the web sites have no problem saying it) mental retardation. I asked if she would ever do his job and he said it was unlikely.(Thanks to cousin Jenn for coming with us and watching Alex while we went in for our appointment.)
That being said he also said he hoped he was wrong and we call him names in a couple of years. (ad libbing)
We are trying to understand this new info with the realization that on Thursday we will return to our local neurologist and ask him a whole bunch of questions. And possibly need to sort through more info. They also took 30 mls of blood to do genetic and other tests.
We have gotten a couple of emails from moms on the hemikids list serve who told us how their children are doing. One mom has a a fellow 2 year-old and another's is a nine year-old who is part of the gifted and talented program at her school and has never had a seizure.
While we are trying to understand this new country we have opened a door to, we look at the same little girl we held Wednesday and we know that nothing on any MRI can truly tell us Kath's limitations and expectations.
That is easier to say at certain parts of the day than others. I have struggled with hives for the past week--the pre-Boston anxiety and now the post, I assume. The week before I spent a week in a neck brace with a 'pulled' neck muscle. So, I am trying to find meaning, measure and peace.
Chris returned to school for his final semester at Bennington College yesterday. We had a great day today with the girls. We created our After Christmas/Valentine's Tree. Our live tree made it from Thanksgiving to--well, it is still with us. We brought it outside yesterday after we took off its Valentine decorations and today we decorated it for the birds and squirrels. Paper towel rolls cut in half and toilet paper rolls were lathered in peanut butter and bird seed with bright red yarn strung through the centers, then hung on our tree that is now residing on our back deck. The girls loved making the bird feeders for their feathered friends and we have bird seed every where. We played outside, made ice cream sundaes, drank cocoa, read, colored and played. It was a good day.
Kath had therapy with the teacher for special ed--Stacey. Stacey said that although she notices that Kath cannot always point to objects when requested and struggles with puzzles, she wouldn't deem her mentally retarded . . .especially when Kath tries to outsmart Stacey for her doll!
Apparently last week and then we saw this week, Kath was playing with a really cute doll Stacey brought that moves her arms and talks, laughs, cries. Last week when it was time for Stacey to leave--Kath hid the doll and then began to point to the dog or something else--to distract. This week she tried to keep saying no and then came over and hugged me. She really wanted to distract us from remembering the doll. Hmm... mental problems?
Dr. Rivkin mentioned memory problems, too. Well, as soon as I told Kath that Stacey was coming she was thrilled. When Stacey showed up, she immediately started to ask for the doll. Mind you, Kath sees Stacey once a week. And she also has OT. Speech. And two PT visits a week. Plus as I said a trip to Boston. Hmm... I think Kath will be breaking many expectations.
That is my prayer.
I also ask you to pray for my friend Donna. Her daughter Hope is in the PICU of Albany Med with a variety of issues that sprouted from her body forming strep viruses and since she has HLHS (hypoplastic left heart syndrome)it is a serious matter. They are both amazing people.
I hope this finds you well. Enjoy the sun!
Monday, February 2, 2009
Darn Groundhog!
So today's writing was going to be funny stories, but I have to begin with something sad for us. I just opened an email from Liz, Kath's PT for hippotherapy and Kath's horse, Mark had to be put to sleep. This is the horse you see in the pictures down the side of this blog that Kath is always riding. Alex started on him too. He was a great friend for us to start hippotherapy with and we will miss him. We haven't been able to do hippotherapy for several months so we missed him before, but it is very sad knowing our old friend will not be there to greet us when we return--hopefully next month.
There is no great way to transition from Mark's passing into funny stories, so I am just going to start a new paragraph.
Alex was telling me how she thought the movie 'Enchanted' was great since at the end the princess marries the prince. I told her--in my mommy-feminist voice--that not everyone had to get married. That one had to choose wisely, that sometimes one THINKS they know what they want, blah, blah, blah. I told her one needed to find someone who loved her with all his heart, made her laugh and worked really hard. She said that, "I would marry daddy, but YOU already did!"
Ah, well, yes, I did.
So, then she said, "I will marry Chris or Nick. They make me laugh a lot."
"Well, you aren't allowed to marry your family members . . ."
"I do NOT think it is right that THEY can tell me who I can marry!"
After a few minutes she decided that she will marry Max, our neighbor across the street who she goes to pre-k with.
**********************************************************************
We have a mouse or something in the laundry room. We have tried to catch it. Yes, we do have a cat. Roger says all we are really doing is feeding the darn thing with our traps. Well, now it is getting a little too comfortable. I can hear it. This morning I went into the laundry room and through to the garage to put something in the refrig in the garage. Kath, my follower, was right behind me, though she luckily halted at the steps, gently calling, "MAMA!MAMA!" I have no idea where she THOUGHT I might escape to . . . . As I started to close the door I looked down into the bucket we use for Bucca's food (and to hold the door closed)and saw a mouse-ish body. I, of course, was cool, calm and collected. Haha. Can't even type it with a straight face! I screamed and did this weird jump/run dance to the steps and practicaly hopped over poor Kath who couldn't move out of my way fast enough! Eik.
Later I checked and the 'dead' mouse was not there. This explains why Bucca won't eat her food--someone else is. But why on earth my cat won't get this thing is beyond me! Alex simply yells in her blood thristy 4 year-old way, "Moran (name of our cat), come kill the mouse!"
******************************************************************
I have grades due tomorrow. See me working on them? So, I decided to get an easy dinner. An already made chicken from the deli department, corn bread, macaroni salad, cranberry sauce and green beans.
"Where does chicken come from?"
Oh great. "What do you mean, Alex?"
"Where does chicken come from? What animal?"
"A chicken."
"You mean that comes from a chicken?? Why do we kill chickens?????"
"Because we like to eat them," I say as I serve the meal.
"Well, they taste good, but that's mean . . .killing a chicken."
"You can be a vegitarian if you like."
"Well, it tastes good . . . "
*************************
Same meal, a bit later. She told Rog that he couldn't have the corn bread. It wasn't good for him.
"What are you talking about, Al?" Roger asked.
With her eyes darting from me to him and back to the shrinking corn bread, 'Well, it tastes good and you're eating it all."
So she told him it was bad for him--like bad for his heart so she could have more.
Wicked child.
Where did she learn that?? :-D
Enjoy!
There is no great way to transition from Mark's passing into funny stories, so I am just going to start a new paragraph.
Alex was telling me how she thought the movie 'Enchanted' was great since at the end the princess marries the prince. I told her--in my mommy-feminist voice--that not everyone had to get married. That one had to choose wisely, that sometimes one THINKS they know what they want, blah, blah, blah. I told her one needed to find someone who loved her with all his heart, made her laugh and worked really hard. She said that, "I would marry daddy, but YOU already did!"
Ah, well, yes, I did.
So, then she said, "I will marry Chris or Nick. They make me laugh a lot."
"Well, you aren't allowed to marry your family members . . ."
"I do NOT think it is right that THEY can tell me who I can marry!"
After a few minutes she decided that she will marry Max, our neighbor across the street who she goes to pre-k with.
**********************************************************************
We have a mouse or something in the laundry room. We have tried to catch it. Yes, we do have a cat. Roger says all we are really doing is feeding the darn thing with our traps. Well, now it is getting a little too comfortable. I can hear it. This morning I went into the laundry room and through to the garage to put something in the refrig in the garage. Kath, my follower, was right behind me, though she luckily halted at the steps, gently calling, "MAMA!MAMA!" I have no idea where she THOUGHT I might escape to . . . . As I started to close the door I looked down into the bucket we use for Bucca's food (and to hold the door closed)and saw a mouse-ish body. I, of course, was cool, calm and collected. Haha. Can't even type it with a straight face! I screamed and did this weird jump/run dance to the steps and practicaly hopped over poor Kath who couldn't move out of my way fast enough! Eik.
Later I checked and the 'dead' mouse was not there. This explains why Bucca won't eat her food--someone else is. But why on earth my cat won't get this thing is beyond me! Alex simply yells in her blood thristy 4 year-old way, "Moran (name of our cat), come kill the mouse!"
******************************************************************
I have grades due tomorrow. See me working on them? So, I decided to get an easy dinner. An already made chicken from the deli department, corn bread, macaroni salad, cranberry sauce and green beans.
"Where does chicken come from?"
Oh great. "What do you mean, Alex?"
"Where does chicken come from? What animal?"
"A chicken."
"You mean that comes from a chicken?? Why do we kill chickens?????"
"Because we like to eat them," I say as I serve the meal.
"Well, they taste good, but that's mean . . .killing a chicken."
"You can be a vegitarian if you like."
"Well, it tastes good . . . "
*************************
Same meal, a bit later. She told Rog that he couldn't have the corn bread. It wasn't good for him.
"What are you talking about, Al?" Roger asked.
With her eyes darting from me to him and back to the shrinking corn bread, 'Well, it tastes good and you're eating it all."
So she told him it was bad for him--like bad for his heart so she could have more.
Wicked child.
Where did she learn that?? :-D
Enjoy!
Sunday, February 1, 2009
One Year Anniversary of sorts
It is the one year anniversary of when we received the news that Katharina's MRI showed she survived a massive stroke to the left side of her brain, while in utero. Her brain, instead of being pink and wrinkly is white and flat.
However, if you saw Katharina today when Alex, Kath and I were in the mall and they were licking HUGE lollipops (the kind you see in movies), or when she was feeding herself (and her shirt)ice cream, or when she and Alex were laughing so hard at the balloons they got from Friendly's, while walking the length of the mall, that people stopped to watch and smile, you would never guess so much damage could be done to a little brain and it learn how to compensate so well.
Yes, we have years of therapy in our future. A bunch of Dr appointments in the next month alone. And Kath and I visited Village Preschool, a school for kids who have an assortment of issues, and we will have to decide her path in education in the next couple of months.
But as I keep saying . . .we are ever so fortunate. The oxygen that mysteriously shut off and caused Kath to stroke, just as mysteriously came back on.
And we share our lives with the crazy chick who survived a stroke before she was even born.
However, if you saw Katharina today when Alex, Kath and I were in the mall and they were licking HUGE lollipops (the kind you see in movies), or when she was feeding herself (and her shirt)ice cream, or when she and Alex were laughing so hard at the balloons they got from Friendly's, while walking the length of the mall, that people stopped to watch and smile, you would never guess so much damage could be done to a little brain and it learn how to compensate so well.
Yes, we have years of therapy in our future. A bunch of Dr appointments in the next month alone. And Kath and I visited Village Preschool, a school for kids who have an assortment of issues, and we will have to decide her path in education in the next couple of months.
But as I keep saying . . .we are ever so fortunate. The oxygen that mysteriously shut off and caused Kath to stroke, just as mysteriously came back on.
And we share our lives with the crazy chick who survived a stroke before she was even born.
Sunday, January 25, 2009
Hearing test and other things
Hello everyone.
Friday I brought Miss Katharina to Albany Medical Center for her second hearing test. My brain IS SO out of it that I thought this was our first test, I thought the test in June was for Alex. Hmm. Good thing I write everything down, eh?
Anyway. Katharina was fantastic. She sat relatively still and allowed the testers to put probes in her ears, she allowed them to talk through head phones to her--she only had that one time before--her FIRST hearing test last June. Pretty strange concept if you think about it. She pointed to pictures of six different objects when requested to through the headphones, most of the time correctly. Considering that most of the time she sees ice cream it is in a bowl (a girl who has limited strength and control in her hands is not often given an ice cream cone!) she did well in choosing the cone or the cupcake-they both looked similar, ice cream-with sprinkles--at the appropriate time.
Then they had her listen to the headphones again and whenever she heard a noise on whatever frequency, she had to drop a block into a pail. That is a hard concept for Kath. It entails listening for something (while wearing probes and wires in front of strangers who stare at you!), taking a block and throwing it in a bucket. That's several activities. The audiologist was great. She took her time and taught Kath what to do, especially once she saw that Kath was actually watching her every move and learning. It took an entire bucket of blocks to understand but understand she did and she aced the test. The audiologist told me afterward (not sure if she said it just to make me feel good or not--though I will take her word!) that it was an activity that 3 1/2 year-olds struggle with. Kath turned 2 in November.
She passed the tests with flying colors, cognitively too. The tests for the most part really just inform us that her ears work--it cannot tell us that the messages are going back and forth to the brain. But she gave us pretty great indicators that things are working just fine.
Alex will have her first real hearing test on the 6th of February at Albany Med. Poor kid. I thought I did it already, considering she is getting speech therapy, it is a good idea for us to make absolutely certain that she is hearing correctly and all her listening facilities are in working order. We will be taking Katharina back to the neurologist and to a hematologist at Albany Med in February and we are also going to Boston Children's Hospital on the 12th of February to the Children's Stroke Unit. I guess it might be called a second opinion, I am thinking of it as an overview.
This week we have been the house of sick. Kath was throwing up in the beginning of the week, and now she has had diarrhea since Friday. Alex has had diarrhea. Roger and I have just felt blah and uncomfortable. Chris was vomiting as well. (Nick is very happy he is away at school--he had a meet at St Lawrence College this weekend--he jumped 19 feet in the long jump.)
I have some funny/good stories I will have to leave for another time--such as the floor crawl by me and Kath waking up and sleeping with me, but I am pretty tired and I have school tomorrow.
As a side note--I have chosen to sell Avon again as well as natural made candles. I will be posting my websites to this blog page soon. I am trying to improve our financial situation by: enabling us to pay our bills on time; saving money for emergencies, helping the boys pay for college, saving for the girls college, saving for our retirements. Avon is always great-they have great products and I buy these candles myself because they smell great and they burn clear-they don't leave dark rings on the glass jars, so they don't leave bad residue in the air for you to breathe. So, if you like either or are interested in either--I will have more later on the sidebar. :-)
What a saleswoman!
My true goal is still to complete my story for Kath and I am working on that too.
Have a great night!
Friday I brought Miss Katharina to Albany Medical Center for her second hearing test. My brain IS SO out of it that I thought this was our first test, I thought the test in June was for Alex. Hmm. Good thing I write everything down, eh?
Anyway. Katharina was fantastic. She sat relatively still and allowed the testers to put probes in her ears, she allowed them to talk through head phones to her--she only had that one time before--her FIRST hearing test last June. Pretty strange concept if you think about it. She pointed to pictures of six different objects when requested to through the headphones, most of the time correctly. Considering that most of the time she sees ice cream it is in a bowl (a girl who has limited strength and control in her hands is not often given an ice cream cone!) she did well in choosing the cone or the cupcake-they both looked similar, ice cream-with sprinkles--at the appropriate time.
Then they had her listen to the headphones again and whenever she heard a noise on whatever frequency, she had to drop a block into a pail. That is a hard concept for Kath. It entails listening for something (while wearing probes and wires in front of strangers who stare at you!), taking a block and throwing it in a bucket. That's several activities. The audiologist was great. She took her time and taught Kath what to do, especially once she saw that Kath was actually watching her every move and learning. It took an entire bucket of blocks to understand but understand she did and she aced the test. The audiologist told me afterward (not sure if she said it just to make me feel good or not--though I will take her word!) that it was an activity that 3 1/2 year-olds struggle with. Kath turned 2 in November.
She passed the tests with flying colors, cognitively too. The tests for the most part really just inform us that her ears work--it cannot tell us that the messages are going back and forth to the brain. But she gave us pretty great indicators that things are working just fine.
Alex will have her first real hearing test on the 6th of February at Albany Med. Poor kid. I thought I did it already, considering she is getting speech therapy, it is a good idea for us to make absolutely certain that she is hearing correctly and all her listening facilities are in working order. We will be taking Katharina back to the neurologist and to a hematologist at Albany Med in February and we are also going to Boston Children's Hospital on the 12th of February to the Children's Stroke Unit. I guess it might be called a second opinion, I am thinking of it as an overview.
This week we have been the house of sick. Kath was throwing up in the beginning of the week, and now she has had diarrhea since Friday. Alex has had diarrhea. Roger and I have just felt blah and uncomfortable. Chris was vomiting as well. (Nick is very happy he is away at school--he had a meet at St Lawrence College this weekend--he jumped 19 feet in the long jump.)
I have some funny/good stories I will have to leave for another time--such as the floor crawl by me and Kath waking up and sleeping with me, but I am pretty tired and I have school tomorrow.
As a side note--I have chosen to sell Avon again as well as natural made candles. I will be posting my websites to this blog page soon. I am trying to improve our financial situation by: enabling us to pay our bills on time; saving money for emergencies, helping the boys pay for college, saving for the girls college, saving for our retirements. Avon is always great-they have great products and I buy these candles myself because they smell great and they burn clear-they don't leave dark rings on the glass jars, so they don't leave bad residue in the air for you to breathe. So, if you like either or are interested in either--I will have more later on the sidebar. :-)
What a saleswoman!
My true goal is still to complete my story for Kath and I am working on that too.
Have a great night!
Tuesday, January 20, 2009
Happy Inauguration Day!
Amazing day. So much history. So much future.
I am awed by today's events. I am awed by the sheer numbers of people who stood outside freezing to have a piece of today etched into their memory, live and freezing. (Although I would like to tell some that 27 degrees is pretty much a heat wave up here these days!) My best wishes and hopes are for today's hopes and optimism to continue and to lead us to more hope, peace and prosperity.
On the home front. Katharina is exploding with development. She attempts all words--her "Obama" is recognizable to Roger and I, but sounds like "baba" to anyone else. Who's the president, Kath? "Baba!" Well, that could actually have nothing to do with the political world but more of what is important to her in her world--her bottle! :-) But I think she knows so much more than she can speak.
I say that with much more certainty than I did even a month ago. She still does some whining and some other aggravating sounds, but she also will take my hand and drag me to the cabinet and point and say "cocoa" until I understand that she wants Ovaltine AND I better be putting it into the microwave to warm it up!
She is also RUNNING. Really fast. Much more balanced. Yes, she still crashes into objects--toys SHE threw around the room--walls--Bucca--her sister--the couch, etc, but it is much less than she used to. She has been running from the laundry room straight through to the living room and back again. She does this while SHRIEKING loudly. VERY loudly. And laughing. And chasing Alex.
She is also learning how to kid around. I snuggled up into Alex's bed one morning-while Kath was still in her crib and Alex was in the rocking chair. I said,
"Oh, my bed is comfortable."
Alex exclaimed, "No! That's my bed!"
I said, "No, it's mine. Right Kath?"
Kath looked at each of us and said, "Als." But I kept it up, teasing Alex. After about 4 times, Kath got this glint in her eye, jumped up in her bed as if she couldn't hold in her excitement--she figured out it was a joke! She said, "MOMMA!" the next time I asked who's bed it was. Then Alex was beside herself with laughter! Kath was so proud of herself. And we laughed.
We are blessed. Kath is progressing impressively.
For the rest of us. Roger went for an EKG Monday because of chest pains. He apparently had been having them all weekend but since our doctor wasn't open, he didn't want to say anything. Luckily, he was only diagnosed with bronchitis. (I would have killed him if he had a heart attack!)Then Monday night the girls ended up having sick bellies, which luckily went away as did mine. Roger ended up staying home today because he had belly issues on top of his bronchitis. But he is better, he even cooked dinner.
We are having an issue with Roger's car, and grades are due next week so we are at our stressful time, but life is good. Kath is progressing. We have a new president. There is more light in our days. A pilot safely landed a plane with 155 people into the Hudson River. The boys are studying at good schools. Life is good.
PS--Check out a new web site I added to my sites www.foodiesvision.com. A high school friend of mine has begun this-and boy do these recipes sound very yummy.
I am awed by today's events. I am awed by the sheer numbers of people who stood outside freezing to have a piece of today etched into their memory, live and freezing. (Although I would like to tell some that 27 degrees is pretty much a heat wave up here these days!) My best wishes and hopes are for today's hopes and optimism to continue and to lead us to more hope, peace and prosperity.
On the home front. Katharina is exploding with development. She attempts all words--her "Obama" is recognizable to Roger and I, but sounds like "baba" to anyone else. Who's the president, Kath? "Baba!" Well, that could actually have nothing to do with the political world but more of what is important to her in her world--her bottle! :-) But I think she knows so much more than she can speak.
I say that with much more certainty than I did even a month ago. She still does some whining and some other aggravating sounds, but she also will take my hand and drag me to the cabinet and point and say "cocoa" until I understand that she wants Ovaltine AND I better be putting it into the microwave to warm it up!
She is also RUNNING. Really fast. Much more balanced. Yes, she still crashes into objects--toys SHE threw around the room--walls--Bucca--her sister--the couch, etc, but it is much less than she used to. She has been running from the laundry room straight through to the living room and back again. She does this while SHRIEKING loudly. VERY loudly. And laughing. And chasing Alex.
She is also learning how to kid around. I snuggled up into Alex's bed one morning-while Kath was still in her crib and Alex was in the rocking chair. I said,
"Oh, my bed is comfortable."
Alex exclaimed, "No! That's my bed!"
I said, "No, it's mine. Right Kath?"
Kath looked at each of us and said, "Als." But I kept it up, teasing Alex. After about 4 times, Kath got this glint in her eye, jumped up in her bed as if she couldn't hold in her excitement--she figured out it was a joke! She said, "MOMMA!" the next time I asked who's bed it was. Then Alex was beside herself with laughter! Kath was so proud of herself. And we laughed.
We are blessed. Kath is progressing impressively.
For the rest of us. Roger went for an EKG Monday because of chest pains. He apparently had been having them all weekend but since our doctor wasn't open, he didn't want to say anything. Luckily, he was only diagnosed with bronchitis. (I would have killed him if he had a heart attack!)Then Monday night the girls ended up having sick bellies, which luckily went away as did mine. Roger ended up staying home today because he had belly issues on top of his bronchitis. But he is better, he even cooked dinner.
We are having an issue with Roger's car, and grades are due next week so we are at our stressful time, but life is good. Kath is progressing. We have a new president. There is more light in our days. A pilot safely landed a plane with 155 people into the Hudson River. The boys are studying at good schools. Life is good.
PS--Check out a new web site I added to my sites www.foodiesvision.com. A high school friend of mine has begun this-and boy do these recipes sound very yummy.
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