Showing posts with label kelsey can. Show all posts
Showing posts with label kelsey can. Show all posts
Monday, August 15, 2011
(Over)Due
Obviously this blog has been terribly neglected over the last several months. You all are long overdue for an update.
There has however been a reason...(which those of you in real life know)
Kelsey is set to be a big sister any day now.
My due date has come and gone.
She is super excited about being a "helper" and laughs when we talk about baby brother crying "wa wa wa."
I think this will be great for her, though an adjustment for all of us.
Here is a video of her "playing" with Baby Brother the other day.
Any prayers for a positive, "normal" labor and delivery experience would be much appreciated.
There has however been a reason...(which those of you in real life know)
Kelsey is set to be a big sister any day now.
My due date has come and gone.
She is super excited about being a "helper" and laughs when we talk about baby brother crying "wa wa wa."
I think this will be great for her, though an adjustment for all of us.
Here is a video of her "playing" with Baby Brother the other day.
Any prayers for a positive, "normal" labor and delivery experience would be much appreciated.
Labels:
cerebral palsy,
feelings,
fun,
kelsey can,
prayer,
thankful
Saturday, February 26, 2011
Bridging two worlds
I have made the intentional decision since Kelsey was a baby to give her as normal of an experience as possible. I am sure that initially it was my intention to somehow defy all odds and "cure" her of all of her challenges by putting enough effort in.
It has slowly evolved into a philosophy of acceptance of Kelsey's limitations, but desire that she be challenged, and challenge herself, to not stay at the level of low expectation that some might have for others in her position, but instead grow into a independent, productive girl (and someday, lady).
These goals have brought me to situations that I might otherwise like to avoid.
Honestly, it hurts to see your child struggle to do things that should come easily to them, but it is an entirely other level to put your child in with her typical peers and to see first hand everything she should be doing, saying, being.
But ultimately it does no one any good to pretend that the "typically developing" world does not exist and choose to bury your head in the "look at how good she is doing compared to how she could be" special needs world.
We take Kelsey everywhere with us. We do not not go places because of her special needs. In fact, we probably seek out more sensory and fun activities than we might otherwise do.
In November, Kelsey took the biggest step thus far in pushing into the world of the "typicals."
Kelsey attends a community preschool at a local church with the support of school district staff and an incredibly loving teacher, director, and staff there.
It has been the most heartwarming and, at times, heartbreaking thing we have done for Kelsey.
It was not the easy path. It was not the "normal" placement for someone with the physical disabilities Kelsey has.
Yet it is the only path that I felt right for my girl.
(we are blessed to be able to continue services at her private special needs school so we did not have to sacrifice therapy for placement here)
Kelsey loves to go to preschool. The kids are absolutely wonderful together. They were quick to accept Kelsey and call her their friend.
Kelsey has blossomed there. She is so talkative about it. That is the place that she most often makes her walker "go" all on her own. She is attentive and excited about going and being there.
She has been to a birthday party of a classmae. She has been called "my best friend Kelsey that God sent to me." Her classmates help her motor through the actions to songs. They get right up close to her to talk to her and engage her. They help her "catch" the ball and wait for her to drop it ("throw") it back to them.
Kelsey has done all of this on her own. It is amazing to me. After facilitating all of her interactions (mostly adults) for the first three years of her life, here is my spunky, opinionated, nonverbal daughter developing relationships with "typical" peers with help from no one.
Last night I went to a girls night out event at this church and spoke briefly to the mom of a boy in Kelsey's class. She was so nice to me. She commented on how well Kelsey was doing in her walker. She said it was so good for the kids to have Kelsey there because of the compassion for others and kindness it helps them to learn.
I know this is true.
I know that if I was in this mom's place with my son, I would feel the same. I know that diversity does make us all better for having experienced it. I guess I just wish it wasn't my little girl that was the carrier of the message.
I also know, in some ways, it is an honor for Kelsey to be the carrier of that message.
Kelsey is so close to being just another kid and yet in some ways so far.
I yearn for the time that Kelsey will be able to fully verbally (or with a communication device) be able to express all that she is.
The fun parts, the sassy parts, how smart she is...
That she will be seen for who she is and not the equipment she uses.
That she will be seen for everything she brings to the table in spite of her disability and not because of it.
Tuesday, February 1, 2011
Moving Moving
Kelsey moved the kidwalk all by herself! Outside!
(She had moved it some on tile floors and with her roller skates on, but she is getting stronger!)
If your name is Grammy or Grandma, you can go "here" to see the other two clips.
(She had moved it some on tile floors and with her roller skates on, but she is getting stronger!)
If your name is Grammy or Grandma, you can go "here" to see the other two clips.
Labels:
dystonic cerebral palsy,
fun,
grateful,
kelsey can,
motor planning,
PT,
school,
thankful
Friday, October 8, 2010
Kelsey Roller Skates in her Kidwalk
Last week Kelsey was put in roller skates at school during her class time.
It made me so happy to think that they let her experience something like that.
Bryan and I were talking about it on Wednesday night and I was thinking it over in my head.
So many times you can feel Kelsey trying to activate muscles when she is trying to walk, but she isn't getting any results for her efforts. We wondered if the skates would help give her that movement feedback.
So Bryan got some at Walmart. We put her (hated) AFOS on and then we put on the skates.
This video is what she did.
She got the balloons the first time quickly (the first couple of minutes in the video) and then it was the second time that it took her longer. But she bent her knees some (IN THE AFOS!)
So cool that she moved the kidwalk all by herself (which she hasn't been able to do) and that she went for a target and got it! She found the balloons there herself. We hadn't pointed them out to her.
It made me so happy to think that they let her experience something like that.
Bryan and I were talking about it on Wednesday night and I was thinking it over in my head.
So many times you can feel Kelsey trying to activate muscles when she is trying to walk, but she isn't getting any results for her efforts. We wondered if the skates would help give her that movement feedback.
So Bryan got some at Walmart. We put her (hated) AFOS on and then we put on the skates.
This video is what she did.
She got the balloons the first time quickly (the first couple of minutes in the video) and then it was the second time that it took her longer. But she bent her knees some (IN THE AFOS!)
So cool that she moved the kidwalk all by herself (which she hasn't been able to do) and that she went for a target and got it! She found the balloons there herself. We hadn't pointed them out to her.
Labels:
adapted toy,
cp,
dystonic cerebral palsy,
fun,
kelsey can,
microcephaly,
motor planning
Wednesday, July 28, 2010
Help us Raise Money for IDC
Kelsey goes to the Lee Ann Britain center each week, several times a week to go to class with other children and for individual therapies.
It is a great place which Kelsey loves. She kicks her legs in excitement when I stop the car, knowing we are at school.
Kelsey swims, plays in their gym, works with her hands, and works on communicating her needs while there.
We ask for your support in helping Kelsey and other kids like her to meet their full potential.
http://www.firstgiving.com/kelseycan
It is a great place which Kelsey loves. She kicks her legs in excitement when I stop the car, knowing we are at school.
Kelsey swims, plays in their gym, works with her hands, and works on communicating her needs while there.
We ask for your support in helping Kelsey and other kids like her to meet their full potential.
http://www.firstgiving.com/kelseycan
Monday, July 12, 2010
Counting Our Blessings
This little girl of mine never ceases to amaze me.
Tonight was the first time we got these puzzle pieces out. It was the first time I asked her to do anything like this with numbers.
Where does she pick this stuff up?
I am so proud.
Tonight was the first time we got these puzzle pieces out. It was the first time I asked her to do anything like this with numbers.
Where does she pick this stuff up?
I am so proud.
Tuesday, June 15, 2010
Communication update
Kelsey is amazing. Her ability to learn and adapt is amazing. I am a little biased.
Kelsey has known her “left” from her “right” for quite awhile now. This probably has resulted from the weekly therapy she receives and the verbal movement cues we give her. This past fall, she developed enough motor control to make choice selections based on telling her where each toy was located. (We would present both toys in her strongest visual field and then verbally tell her “ball on left, beads on right.” She would then choose which toy to play with.) Her early intervention SLP brought “yes” and “no” cards out and she began answering questions with those.
She has progressed from a borrowed three button device which we programmed to say "yes" and "no" and she accurately answered all kinds of age appropriate knowledge questions --even things I didn't teach her on purpose. She also gets a "kick" out of having a voice. (She also thinks it's funny to say "no" 99% of the time when asked if Mama is a good girl.)
I then sought out a borrowed "Go Talk 4" with 4 choices on each of five levels. She has mastered use of this device and quickly picks up new visual icons and remembers their associated meaning from session to session. We have now sent this back to the agency we borrowed it from.
She has progressed from a borrowed three button device which we programmed to say "yes" and "no" and she accurately answered all kinds of age appropriate knowledge questions --even things I didn't teach her on purpose. She also gets a "kick" out of having a voice. (She also thinks it's funny to say "no" 99% of the time when asked if Mama is a good girl.)
I then sought out a borrowed "Go Talk 4" with 4 choices on each of five levels. She has mastered use of this device and quickly picks up new visual icons and remembers their associated meaning from session to session. We have now sent this back to the agency we borrowed it from.
We received in return a "Go Talk 20" this week to borrow for awhile. (They did not have the "Go Talk 9" available) The "9" would have been more appropriate for Kelsey's motor skills because the squares of the "20" are smaller than her fisted hand. She is not always able to activate the voice output of the "20" because of this, but gets her hand to the desired button and leaves it there so her intent is clear.
She is able to handle visually all 20 icons filled out which is amazing considering her visual impairment. She quickly learned all the new choices we added with the "20" and has remembered them ever since without me going back over them at all.
She is able to handle visually all 20 icons filled out which is amazing considering her visual impairment. She quickly learned all the new choices we added with the "20" and has remembered them ever since without me going back over them at all.
She also learned to do sentences. (with the "4" we had programmed in one word phrases like "ball", "eat", "play") With the "20" there is enough room that we did "I feel", "I want", "I need" and then various choices for those items.
We believe Kelsey is ready to move on to a more complex device which will allow her to have more self directed conversations. We are planning to get the Ipad with the Proloquo2go software and accessories.
We were excited to trial an Ipad at the Apple store using some free downloadable children’s games. We were amazed at what she was able to do with the device and the size of the icons she was able to access. Because the Ipad is essentially a computer screen, it acts like a dynamic “light box” like she uses in vision therapy. Kelsey was very motivated and seemed to be seeing better than I had even hoped she would be able to.
For now the GoTalk 20 gives her alot more choices.I am so proud.
Monday, May 3, 2010
Get a Job!


Thinking it was time Kelsey started earning her keep, we went to the velvet creme popcorn company. Doesn't the name alone sound appetizing?
Kelsey attended a build-a-ball event. And she made quite the creation. Luckily for us, we went to the latest shift of the day and there was only Kelsey and another little boy. So she had plenty of room and plenty of time to complete her ball.
She thought she was quite the fashion model the minute we put her hair sanitary cap on her.




Labels:
adaptive activities,
cerebral palsy,
fun,
intelligence,
kelsey can,
smile,
thankful
Wednesday, April 7, 2010
Funny Girl
I asked Kelsey "Can you show Amy the "play" button?"
She said (pushed) "Yes"
I said "Kelsey push the "play" button"
And she pushed it.
I love her sense of humor.
(I should mention that "play" is up and to the left on her GoTalk which means crossing midline and reaching up high to push the button. So if she would have "got away" with saying "yes" to my question that would have been less work for her. :) )
She said (pushed) "Yes"
I said "Kelsey push the "play" button"
And she pushed it.
I love her sense of humor.
(I should mention that "play" is up and to the left on her GoTalk which means crossing midline and reaching up high to push the button. So if she would have "got away" with saying "yes" to my question that would have been less work for her. :) )
Labels:
cerebral palsy,
communication,
cp,
disability,
dystonic cerebral palsy,
fun,
kelsey can,
thankful
Thursday, April 1, 2010
Adaptive Easter Egg Coloring
Last night we met Fletcher and his family for supper and then for Easter Egg coloring.
We had so much fun!
My goal is to have Kelsey experience as many age appropriate things as she can. I try to find ways to work around the physical limitations so she can still have the cognitive stimulation and experiences that typical kids her age are having.
We started with the traditional Easter egg dye and then some awesome kits that Fletcher's mom, Erin, found at Target.


We also used Ziploc plastic bags and a plastic storage container to put the dye in. We were able to seal the bags with the egg and the dye in them and have the kids squish the egg back and forth to color it. We tried the same thing with the storage container (rolling it back and forth), but for us the bags worked better.
The rollers in the kit above were great to place in the kids' hands and help them/let them roll the dye onto the egg. (The rollers are a spongy material with a plastic handle.)
Sunday, March 21, 2010
The Harm of Low Expectations - aka "The File"
Kelsey went to a doctor recently. One who last time we saw them said essentially (not in overt words) "See you in 8 mo. I have no hope for your daughter's improvement in this particular area."
Kelsey and I are well-versed in ignoring poor "professional" opinions.
In this instance, I was fortunate enough to have one of Kelsey's therapists accompany us to the appointment. (She was kind enough to offer after I indicated how I felt about what happened last time.)
As it turns out, she was needed. The doctor did not believe what I had to say until it was confirmed by the therapist.
I understand the "professional skepticism" idea; however, I feel that I have educated myself and do not come across as a naive parent just believing what she wants to believe about my daughter.
I know from my own research the odds, percentages, etc of all kinds of things that three years ago I wasn't aware existed. I am fortunate that I have the intelligence that I do and have been able to find the answers, the research, treatments, and equipment that Kelsey has thus far needed.
But what of those parents that sit in a "care conference" with their newborn in the NICU across the hall and believe 100% what the doctors say when they say their baby will essentially be a vegetable? That she has a good brain stem and "will live for awhile"?
What of the parents that accept what a therapist has to say as 100% fact? The parents that believe that their child is not capable or smart because they are nonverbal? The parents that give up hope so as to not be accused of being in denial?
If I would have listened and believed everything I heard, Kelsey would not be who she is today.
Do you know how we know Kelsey can do the things she can?
Because I tried. I offered her the opportunity. I pushed for the opportunity. I researched what might work.
As a parent with a child with "special needs", you can not wait for the doctors or therapists to suggest to you what your child needs or is capable of.
You must determine that for yourself.
I am the one who got the Fisher Price piggy bank and tried to get her to take the coins from me. I am the one who got the knob puzzle, showed it to her and let her try to do it. I am the one that tries to give her a verbal "play by play" of what I am doing so she doesn't miss out...
I wanted to get a communication device to try with her b/c she knew left/right and was using it to make choices. We got "yes" "no" cards and guess what? She answered questions.
Then they brought a three button device (of which we use two) which we programmed to say "yes" and "no" and she accurately answers all kinds of age appropriate knowledge questions --even things I didn't teach her on purpose and gets a "kick" out of having a voice. (She also thinks it's funny to say "no" 99% of the time when asked if Mama is a good girl.)
But more than that, it makes me sad because I know that there are other Kelsey's out there whose parents did believe all the bad news....and because they believed, they never tried.
There are Kelsey's out there trapped in themselves, never getting the opportunity to live to their potential.
Kids can't do anything if not given the opportunity. Will there be things that Kelsey won't do? Sure. (just like with any kid (maybe just different things))
But do I know that she 100% won't do the things that I never let her try?
Absolutely.
Does she sometimes surprise me?
Absolutely. (like when she chooses to play with the baby doll when I am sure she wants to put on her beads or when she says "i" on cue to my "hello" or "un" on cue in the Mr. Sun song as if she always can get her words out that easily.)
I knew holding newborn Kelsey in my arms in her room that she was in there. I remember sitting in my grandma's wooden rocking chair, holding her in my arms crying, and telling her I loved her and knew she was there. That we would make it through this. That she fought to get here and I would fight for her now that she was here.
Maybe that has been part of the difference. When we lost Kaitlyn (Kelsey's identical twin), all I could think of was getting Kelsey here "safe". If she just made it to birth, everything would be ok. That she wanted so badly to be here and was meant to be here.
When she did make it, I knew she was a fighter. I knew she had a future.
These are all things I still know and now she can start telling us.
She can start telling her own story.
Kelsey and I are well-versed in ignoring poor "professional" opinions.
In this instance, I was fortunate enough to have one of Kelsey's therapists accompany us to the appointment. (She was kind enough to offer after I indicated how I felt about what happened last time.)
As it turns out, she was needed. The doctor did not believe what I had to say until it was confirmed by the therapist.
I understand the "professional skepticism" idea; however, I feel that I have educated myself and do not come across as a naive parent just believing what she wants to believe about my daughter.
I know from my own research the odds, percentages, etc of all kinds of things that three years ago I wasn't aware existed. I am fortunate that I have the intelligence that I do and have been able to find the answers, the research, treatments, and equipment that Kelsey has thus far needed.
But what of those parents that sit in a "care conference" with their newborn in the NICU across the hall and believe 100% what the doctors say when they say their baby will essentially be a vegetable? That she has a good brain stem and "will live for awhile"?
What of the parents that accept what a therapist has to say as 100% fact? The parents that believe that their child is not capable or smart because they are nonverbal? The parents that give up hope so as to not be accused of being in denial?
If I would have listened and believed everything I heard, Kelsey would not be who she is today.
Do you know how we know Kelsey can do the things she can?
Because I tried. I offered her the opportunity. I pushed for the opportunity. I researched what might work.
As a parent with a child with "special needs", you can not wait for the doctors or therapists to suggest to you what your child needs or is capable of.
You must determine that for yourself.
I am the one who got the Fisher Price piggy bank and tried to get her to take the coins from me. I am the one who got the knob puzzle, showed it to her and let her try to do it. I am the one that tries to give her a verbal "play by play" of what I am doing so she doesn't miss out...
I wanted to get a communication device to try with her b/c she knew left/right and was using it to make choices. We got "yes" "no" cards and guess what? She answered questions.
Then they brought a three button device (of which we use two) which we programmed to say "yes" and "no" and she accurately answers all kinds of age appropriate knowledge questions --even things I didn't teach her on purpose and gets a "kick" out of having a voice. (She also thinks it's funny to say "no" 99% of the time when asked if Mama is a good girl.)
Finally I sought out a "Go Talk 4" with 4 choices b/c I thought she could do it. and guess what? She can. (can't always get the button to activate the voice, but gets her hand there.) and I am confident she could do more choices at a time if not for her motor skills.
I am so tired of constantly having to prove to everyone that Kelsey is cognitively capable. It seems no one wants to give her the benefit of the doubt and wants to put her in a box until she proves otherwise.
But more than that, it makes me sad because I know that there are other Kelsey's out there whose parents did believe all the bad news....and because they believed, they never tried.
There are Kelsey's out there trapped in themselves, never getting the opportunity to live to their potential.
Kids can't do anything if not given the opportunity. Will there be things that Kelsey won't do? Sure. (just like with any kid (maybe just different things))
But do I know that she 100% won't do the things that I never let her try?
Absolutely.
Does she sometimes surprise me?
Absolutely. (like when she chooses to play with the baby doll when I am sure she wants to put on her beads or when she says "i" on cue to my "hello" or "un" on cue in the Mr. Sun song as if she always can get her words out that easily.)
I knew holding newborn Kelsey in my arms in her room that she was in there. I remember sitting in my grandma's wooden rocking chair, holding her in my arms crying, and telling her I loved her and knew she was there. That we would make it through this. That she fought to get here and I would fight for her now that she was here.
Maybe that has been part of the difference. When we lost Kaitlyn (Kelsey's identical twin), all I could think of was getting Kelsey here "safe". If she just made it to birth, everything would be ok. That she wanted so badly to be here and was meant to be here.
When she did make it, I knew she was a fighter. I knew she had a future.
These are all things I still know and now she can start telling us.
She can start telling her own story.
I hope that some new parent reads this and it provides encouragement. I hope it provides "permission" to believe.
After all, what do you have to lose?
I will leave you with something I wrote last year in response to a similar situation with a professional.
------------------------
I must steal "the File".
It is the enemy.
Yes Kelsey has microcephaly, porencephaly, optic nerve hypoplasia, possible cortical visual impairment, and dystonic quadriplegia cerebral palsy, but she is also a bright and beautiful toddler with unlimited mental potential.
Kelsey is not as scary as her file looks.
Kelsey really does not present (as the medical people would say) as you would expect someone with all her labels to.
Does she have a brain injury?
Yes.
Has she worked a way around it, improving every day?
Absolutely.
Friday, March 5, 2010
Fun with Kelsey
We have been having a good time around here. In fact, as noted by the lack of blog postings, too busy of a time.
Thought I would share some cute videos of Kelsey.
Only watch if you have not exceeded your daily recommended allowance of cuteness!
She really likes the "toes" part right now. I think the stretch feels good for her. She also really likes it when we label all her body parts as we help her touch them.
The Apple Tree rhyme that we learned at school a very long time ago!
Not sure that either one of these takes the place of beloved "Mr. Sun" but we sure did have fun!
Thought I would share some cute videos of Kelsey.
Only watch if you have not exceeded your daily recommended allowance of cuteness!
She really likes the "toes" part right now. I think the stretch feels good for her. She also really likes it when we label all her body parts as we help her touch them.
The Apple Tree rhyme that we learned at school a very long time ago!
Not sure that either one of these takes the place of beloved "Mr. Sun" but we sure did have fun!
Labels:
cerebral palsy,
cp,
fun,
grateful,
intelligence,
kelsey can,
singing,
smile,
thankful
Thursday, February 11, 2010
Yes, No, Maybe So
Look at my girl go!
She has been doing yes/no cards on a black binder for about a week now. She is really really accurate.
Yesterday her home OT brought out this voice output device. When she was in her corner chair she couldn't quite get her arms to move enough to activate both "yes" and "no" as accurately.
Last night I sat her on my lap, so she had the ability to lean back and then forward. We asked her all kinds of things.
Later I recorded this.
She has been doing yes/no cards on a black binder for about a week now. She is really really accurate.
Yesterday her home OT brought out this voice output device. When she was in her corner chair she couldn't quite get her arms to move enough to activate both "yes" and "no" as accurately.
Last night I sat her on my lap, so she had the ability to lean back and then forward. We asked her all kinds of things.
Later I recorded this.
Labels:
cerebral palsy,
communication,
cp,
disability,
fun,
grateful,
intelligence,
kelsey can,
motor planning,
success story,
thankful
Friday, December 18, 2009
Communication
It is amazing how much Kelsey has been communicating.
Ever since we learned that she could choice make using "left" and "right" reaching, it has really opened things up. She also is way more vocal lately. It could be that her head congestion is finally better or maybe that she sees we really are listening.
We have a cute video that I will have to try to convert of her telling us "ya" to things she likes and "ooH" (no) to if she likes bedtime. In that video, I ask her if she likes dad and instead of her usual "ya" she says "offfv ad" (love dad) It is really sweet.
Yesterday with Kristen, she was ready to be finished with a peg board, but Kristen and I were asking her to do one more thing. She sat there and didn't try. Then she signed "all done" with BOTH hands going high and up. (usually just the right hand does the "all done" sign) and then she verbally said "un" (done)
She is laughing more and more spontaneously and it is absolutely precious.
Can't wait to hear "offv ahma" all the time. :)
Ever since we learned that she could choice make using "left" and "right" reaching, it has really opened things up. She also is way more vocal lately. It could be that her head congestion is finally better or maybe that she sees we really are listening.
We have a cute video that I will have to try to convert of her telling us "ya" to things she likes and "ooH" (no) to if she likes bedtime. In that video, I ask her if she likes dad and instead of her usual "ya" she says "offfv ad" (love dad) It is really sweet.
Yesterday with Kristen, she was ready to be finished with a peg board, but Kristen and I were asking her to do one more thing. She sat there and didn't try. Then she signed "all done" with BOTH hands going high and up. (usually just the right hand does the "all done" sign) and then she verbally said "un" (done)
She is laughing more and more spontaneously and it is absolutely precious.
Can't wait to hear "offv ahma" all the time. :)
Labels:
cerebral palsy,
communication,
cp,
intelligence,
kelsey can,
motor planning
Friday, December 4, 2009
This Week's Thankfulness
* I am thankful that Kelsey was able to hit the button of a toy while sitting without help and only being supported at the wrist of the opposite hand. (And I am thankful that Mo (her PT in class at school)suggested trying this!)
(Related to this I am so very glad at how much stronger Kelsey's trunk muscles are getting)
* I am thankful for how much Kelsey loves all of her teachers.
It was such a joy to see Kelsey with Debbie at the Christmas program and how excited she was after 3-4 weeks without seeing her.
She just has so many special people in her life and I love that she loves them and works so hard for them.
* I am thankful for how much more she is "talking" this week and how much more opininated she is these days. (I *think* I am thankful for that ;) )
* I am thankful for the progress she has been making in the last six months, that she now has some pretty good ways to communicate her wants and feelings, and that she continues to grow and learn.
* I am thankful for the Christmas program for her school, how cute she was as a little Christmas elf, the opportunity she had to be on stage, and the visit with Santa Claus!
* I am thankful for the children that are older than Kelsey that I get to watch grow and achieve. It gives me so much hope for Kelsey's future.
(Related to this I am so very glad at how much stronger Kelsey's trunk muscles are getting)
* I am thankful for how much Kelsey loves all of her teachers.
It was such a joy to see Kelsey with Debbie at the Christmas program and how excited she was after 3-4 weeks without seeing her.
She just has so many special people in her life and I love that she loves them and works so hard for them.
* I am thankful for how much more she is "talking" this week and how much more opininated she is these days. (I *think* I am thankful for that ;) )
* I am thankful for the progress she has been making in the last six months, that she now has some pretty good ways to communicate her wants and feelings, and that she continues to grow and learn.
* I am thankful for the Christmas program for her school, how cute she was as a little Christmas elf, the opportunity she had to be on stage, and the visit with Santa Claus!
* I am thankful for the children that are older than Kelsey that I get to watch grow and achieve. It gives me so much hope for Kelsey's future.
Labels:
cerebral palsy,
cp,
feelings,
grateful,
intelligence,
kelsey can,
thankful
Sunday, November 15, 2009
Daddy's Unedited Notes for your Reading Pleasure
Daddy’s Raw, Unedited, reports on Kelsey… for your reading pleasure, since it’s 3 months of misc. items:
.
Kelseycan. She walked from the office to our bedroom with Kelly holding her under her arms, right leg, left leg. I massaged her right leg and behind her knee, and it would coax her on, relieving the excess tone. She had been laying on the floor, on my stacks of sorted papers, but she was having fun with them, so I couldn't see moving her. She was just moving all over, messing them up, wrinkling, etc, lol. She played with her Penguin, and would punch it move it, talk to it, and laugh loudly when she made it talk. First time I have seen her play by herself that way and be happy, totally entertaining herself, and enjoying it all. She would look at me for encouragement, and same, had done that at school yesterday, paying as much attention as if to say, Daddy, are you seeing me? Tonight also, after prompting her just twice, she said Boo, very distinctly, with the Ba sound! We both screamed Yeaaah, Kelsey, woo hoo, which led to a 3 minute pout and near tears. She just is not sure about over excitement, and we think she thinks we are yelling at her, and doesn't seem to matter how much calming her, that even seems to make the lip stick out further. 11/12/09 10:59p
Kelsey watched me play a video game, the historic games of pacman, galaxia, and a couple others. She was just watching, and talking, and when i got done, or the ghosts were chasing, and about to get me, she would say, OHHHH, OR GO! Laughed at music between levels, or the sounds / movements of me turning around and eating the ghosts. In Galaxia, she would talk when the bugs would come down to chase me. She is very smart, sees well, and shows anticipation, and reaction. 11/5/09 2:02a
Kelsey ate a 4 oz food jar in 12 minutes! yay Kelsey. She has just ate and ate today!10/29/09 12:00a
Kelsey 10/19/09, was hungry, just waited to feed her when she asked rather than wasting time trying to force it to her. She had been good all day hanging out, and i had a bottle sitting by her, and she laying on the floor, kept looking over her head at it and kept moving that way, got to the point she was at it and was sucking on the outside of the bottle, knowing that was her food and she was hungry. So neat to see acknowledgement and desire, and doing what she could , problem solving as best she could, on her own, to fill the need.
Kelly was kissing on Kelsey, and she spontaneously said ama, i uv ooo. 10/15/09 7:34p
Kelsey tried out the completed crawler i made, and loved it, moved all around the entryway. The night before, we were in the hottub at the hotel chuck stayed at, and for about a1.5 hours, she just kicked, and talked and walked, and moved her arms and legs. I was feeding her a bottle after her crawler time, and after asking her all done or more bottle, she said done bottle. 9/30/09
Kelly, Kelsey, and I went to the park with the fishing lake in Olathe. We found a dock that was vacant, and after introducing Kelsey to the lake view, having her be pretty mellow, I finally laid back on the deck and let Kelsey lay on me. Holding her, I relaxed completely, got into a trance zone, and prayed about Kelsey, "I am grateful for her making all her nerve connections, growing, learning, and achieving new things daily. I am grateful for her quickly learning how to walk, talk, crawl, do all her motor skills and having all her muscles be fully functional, and being able to feed herself." Some kids came to fish, and took a bit away from the trance/zone I was in, so I sat up and held Kelsey on the dock. She was sitting with her knees bent, laying against me, with her arms pulled up high on her chest. I considered the possibility of the kids casting poorly as I used to, so after a few minutes, decided it best to leave. We had her touch her face, she was licking at her hand. I moved her hand around and told her to wipe wipe wipe the mouth off. Kelly looked at Kelsey sitting there and said, "you know, with her arms up like that and her hands now working better, she could feed herself a cookie". Hmmmmmmmm. So we got home, and finding a way to keep her elbows up, she was holding a cookie close, and she just kept pecking at it, moving her arms a little, and moving her head toward it, to bite it. 9/7/09 5:02p
kelseycan Concerts Kelsey Attended, brooks and Dunn, Gary Allen aug 09, Mark Wills-Santacaligon 9-5-09 8/23/09 2:13p , Lonestar 7-08, Eddie money 8-09, Jo Dee Messina 8-09, 6-09 country in the woods Corporate Woods, Emerson Drive
George strait has a song, I Saw God Today" Every day looking at Kelsey, I see God's Miracles. I have never been religious. I believed, and I know right from wrong, and mostly, follow the right path, and endeavor to do so. It can cost you in the short run, but in the long run, all you have is your word. You may make mistakes, and you need to forgive yourself for those you have made, and move on. Some struggle with, including me, with times such as having Kelsey, actually, first it was the loss of her twin sister, we named Kaitlyn. Not having kids, not really caring if I did or not, as it had been difficult for my wife to conceive. I was fine with whatever happened. And then, we found in the clinic that day, that it had. And I knew the moment I looked at the screen. (actually, I thought it was triplets, but the third item was the placenta) Can you say shaky knees? All the emotions; wow, how, now, and holy cow! what a miracle! And then, it was cut short, just about 15 weeks later. And so one. I was sad, disbelieving, and really, just numb. Really, seeming, no emotion, just empty. The most amazing miracle, just got cut short. Was it something we did. We did everything for those babies. All the foods, reading, talking to them, I was at every doctor's appointment but one. The one right before the one where we found out the bad news, that we had lost one. From the time we heard the news, and they said CP. I had the worst feeling, with stereotypes in my head of what that meant. sitting in the car at the parking garage of the children's hospital. I thought, not my child. How? Why? This little angel that slept on my chest at the delivery hospital her first night, seemed so normal, so perfect. This smart little girl who we played with in utero, counting, calling her baby bonk bonk because she would kick and count, One time I poked at her 80 times, and each time, she would kick or poke back, and we counted. However, that was pretty much the only time, in that garage, that I really feared, because at that time, I began faith path, that my little girl would be fine. Thankfully, for two friends, one with an autistic child, and one that works with developmentally challenged children. I think just holding her that first night, making a connection, told me she would help me, and I would help her. All the subsequent doctor's meetings just seemed like a waste of time. Oh sure, she has had challenges, we have had fears, as many parents do, yet we get through them all, and always will, because we, and she, are blessed, and watched over. It is not our choice, we were chosen. Many times, Kelly says why us, after all that we have done right, and you see so many people, drug abusers, etc, that you would think would have children with problems, yet they seem just fine. Then we decide we were chosen for a reason, for a higher reason. We are strong enough to deal with this, and this little girl needs us as much as we need her. Those other people we see would never be able to handle the diagnoses, the time out of a job, etc. It is very difficult for us, and financially, we have struggled recently unlike anytime. Our decisions sometimes seem flawed, yet are very correct, in that this is most important. This is my new passion, because I feel this message is to go out, and I am strong enough and talented enough to get it out. This little girl is a miracle, and I am a witness to God's miracles daily, and that is something I don't know how long it would have taken me to understand outside of this situation. We are to spread the word, and help those less fortunate in belief, knowledge, etc. I have many inventions, business ideas, and passions on my plate. But I feel as of today 8/31/09 4:44a , that this is my purpose, that God wants me to fulfill. I am grateful for anyone's help with this adventure, and we get alot, from some of the most amazing places. God is providing, through sources that really kill those prejudices, or sacred cows from my past. I am a true believer now. Believe and see in the good in any and all people. I am not trying to in any way be preachy to you. I know how some may feel, I felt the same way. I just endeavor to assist you to find the miracles in your life, that may be right in front of your face. I am just a witness for daily blessings entering my life. A catalyst for my talents and abilities. A path for my random creative thoughts. To show people what is possible. Being another source of helpful and hopeful information. Helping you see the answer is within you. In your heart, in your mind, in your connection to your surroundings, the universe, God. You just need a path to find it. 8/31/09
Tuesday Night we ate at Jose Pepper's, and Kelsey sat up well, by herself, looked as if she was falling forward, then caught herself, set herself back, and smiled. Doing it several more times, she would laugh. "That is my new trick...Balance!" Many bites of refried beans, some rice, although didn't quite know what to do with that. Most of everything stayed in. Really seems to like the cornbread! Eating like a big girl. Mommy says "Soon, we will have to buy her own kids meals." [1/2 hour to write these posts! not complaining, just...wow. 1/2 hour to review all that Kelsey did this weekend. all the smiles, all the joy, and accomplishment, pride, excitement. relief. all reviewed, in 30 minutes, really, writing all about the fair would take an hour.] IT is so nice, and refreshing, to see her. I have always been a quiet champion of Kelsey, and knew she would be able to do whatever she wanted. I have always believed. It is so nice to just see what seems like all these switches coming on. She will be walking, crawling, etc, just soon after 2 years. Just seems like such a little person now. Just so connected to her now. It could be difficult for someone to do anything other than work with her, while seeing these great results! I think that is the best thing for her. IT is a blessing that we don't have someone to watch her, and just include her in everying. Looking back, I told her the other day, asked if she knew how lucky she is. I asked her if she knew any kids her age who had gone to Disney, on a cruise, to a different county, to concerts....heck, I think I just figured out she has been to more concerts than I did prior to 21! Likely more in 23 months that I did in 23 years! I think she just gets to see and do so much, it is helping her grow and see all she could be doing, where most kids in a similar situation would see minimal, and "normal" kids would just be home with a sitter often. I think this is paying off for all of us. I think we have more fun including her and showing her things than just doing it. Sure, away time can be nice, but I get alot out of having my little buddy just constantly looking around, and looking up at me and smiling, talking, having a great time. I am blessed. 8/26/09 7:45a
~Daddy
.
Kelseycan. She walked from the office to our bedroom with Kelly holding her under her arms, right leg, left leg. I massaged her right leg and behind her knee, and it would coax her on, relieving the excess tone. She had been laying on the floor, on my stacks of sorted papers, but she was having fun with them, so I couldn't see moving her. She was just moving all over, messing them up, wrinkling, etc, lol. She played with her Penguin, and would punch it move it, talk to it, and laugh loudly when she made it talk. First time I have seen her play by herself that way and be happy, totally entertaining herself, and enjoying it all. She would look at me for encouragement, and same, had done that at school yesterday, paying as much attention as if to say, Daddy, are you seeing me? Tonight also, after prompting her just twice, she said Boo, very distinctly, with the Ba sound! We both screamed Yeaaah, Kelsey, woo hoo, which led to a 3 minute pout and near tears. She just is not sure about over excitement, and we think she thinks we are yelling at her, and doesn't seem to matter how much calming her, that even seems to make the lip stick out further. 11/12/09 10:59p
Kelsey watched me play a video game, the historic games of pacman, galaxia, and a couple others. She was just watching, and talking, and when i got done, or the ghosts were chasing, and about to get me, she would say, OHHHH, OR GO! Laughed at music between levels, or the sounds / movements of me turning around and eating the ghosts. In Galaxia, she would talk when the bugs would come down to chase me. She is very smart, sees well, and shows anticipation, and reaction. 11/5/09 2:02a
Kelsey ate a 4 oz food jar in 12 minutes! yay Kelsey. She has just ate and ate today!10/29/09 12:00a
Kelsey 10/19/09, was hungry, just waited to feed her when she asked rather than wasting time trying to force it to her. She had been good all day hanging out, and i had a bottle sitting by her, and she laying on the floor, kept looking over her head at it and kept moving that way, got to the point she was at it and was sucking on the outside of the bottle, knowing that was her food and she was hungry. So neat to see acknowledgement and desire, and doing what she could , problem solving as best she could, on her own, to fill the need.
Kelly was kissing on Kelsey, and she spontaneously said ama, i uv ooo. 10/15/09 7:34p
Kelsey tried out the completed crawler i made, and loved it, moved all around the entryway. The night before, we were in the hottub at the hotel chuck stayed at, and for about a1.5 hours, she just kicked, and talked and walked, and moved her arms and legs. I was feeding her a bottle after her crawler time, and after asking her all done or more bottle, she said done bottle. 9/30/09
Kelly, Kelsey, and I went to the park with the fishing lake in Olathe. We found a dock that was vacant, and after introducing Kelsey to the lake view, having her be pretty mellow, I finally laid back on the deck and let Kelsey lay on me. Holding her, I relaxed completely, got into a trance zone, and prayed about Kelsey, "I am grateful for her making all her nerve connections, growing, learning, and achieving new things daily. I am grateful for her quickly learning how to walk, talk, crawl, do all her motor skills and having all her muscles be fully functional, and being able to feed herself." Some kids came to fish, and took a bit away from the trance/zone I was in, so I sat up and held Kelsey on the dock. She was sitting with her knees bent, laying against me, with her arms pulled up high on her chest. I considered the possibility of the kids casting poorly as I used to, so after a few minutes, decided it best to leave. We had her touch her face, she was licking at her hand. I moved her hand around and told her to wipe wipe wipe the mouth off. Kelly looked at Kelsey sitting there and said, "you know, with her arms up like that and her hands now working better, she could feed herself a cookie". Hmmmmmmmm. So we got home, and finding a way to keep her elbows up, she was holding a cookie close, and she just kept pecking at it, moving her arms a little, and moving her head toward it, to bite it. 9/7/09 5:02p
kelseycan Concerts Kelsey Attended, brooks and Dunn, Gary Allen aug 09, Mark Wills-Santacaligon 9-5-09 8/23/09 2:13p , Lonestar 7-08, Eddie money 8-09, Jo Dee Messina 8-09, 6-09 country in the woods Corporate Woods, Emerson Drive
George strait has a song, I Saw God Today" Every day looking at Kelsey, I see God's Miracles. I have never been religious. I believed, and I know right from wrong, and mostly, follow the right path, and endeavor to do so. It can cost you in the short run, but in the long run, all you have is your word. You may make mistakes, and you need to forgive yourself for those you have made, and move on. Some struggle with, including me, with times such as having Kelsey, actually, first it was the loss of her twin sister, we named Kaitlyn. Not having kids, not really caring if I did or not, as it had been difficult for my wife to conceive. I was fine with whatever happened. And then, we found in the clinic that day, that it had. And I knew the moment I looked at the screen. (actually, I thought it was triplets, but the third item was the placenta) Can you say shaky knees? All the emotions; wow, how, now, and holy cow! what a miracle! And then, it was cut short, just about 15 weeks later. And so one. I was sad, disbelieving, and really, just numb. Really, seeming, no emotion, just empty. The most amazing miracle, just got cut short. Was it something we did. We did everything for those babies. All the foods, reading, talking to them, I was at every doctor's appointment but one. The one right before the one where we found out the bad news, that we had lost one. From the time we heard the news, and they said CP. I had the worst feeling, with stereotypes in my head of what that meant. sitting in the car at the parking garage of the children's hospital. I thought, not my child. How? Why? This little angel that slept on my chest at the delivery hospital her first night, seemed so normal, so perfect. This smart little girl who we played with in utero, counting, calling her baby bonk bonk because she would kick and count, One time I poked at her 80 times, and each time, she would kick or poke back, and we counted. However, that was pretty much the only time, in that garage, that I really feared, because at that time, I began faith path, that my little girl would be fine. Thankfully, for two friends, one with an autistic child, and one that works with developmentally challenged children. I think just holding her that first night, making a connection, told me she would help me, and I would help her. All the subsequent doctor's meetings just seemed like a waste of time. Oh sure, she has had challenges, we have had fears, as many parents do, yet we get through them all, and always will, because we, and she, are blessed, and watched over. It is not our choice, we were chosen. Many times, Kelly says why us, after all that we have done right, and you see so many people, drug abusers, etc, that you would think would have children with problems, yet they seem just fine. Then we decide we were chosen for a reason, for a higher reason. We are strong enough to deal with this, and this little girl needs us as much as we need her. Those other people we see would never be able to handle the diagnoses, the time out of a job, etc. It is very difficult for us, and financially, we have struggled recently unlike anytime. Our decisions sometimes seem flawed, yet are very correct, in that this is most important. This is my new passion, because I feel this message is to go out, and I am strong enough and talented enough to get it out. This little girl is a miracle, and I am a witness to God's miracles daily, and that is something I don't know how long it would have taken me to understand outside of this situation. We are to spread the word, and help those less fortunate in belief, knowledge, etc. I have many inventions, business ideas, and passions on my plate. But I feel as of today 8/31/09 4:44a , that this is my purpose, that God wants me to fulfill. I am grateful for anyone's help with this adventure, and we get alot, from some of the most amazing places. God is providing, through sources that really kill those prejudices, or sacred cows from my past. I am a true believer now. Believe and see in the good in any and all people. I am not trying to in any way be preachy to you. I know how some may feel, I felt the same way. I just endeavor to assist you to find the miracles in your life, that may be right in front of your face. I am just a witness for daily blessings entering my life. A catalyst for my talents and abilities. A path for my random creative thoughts. To show people what is possible. Being another source of helpful and hopeful information. Helping you see the answer is within you. In your heart, in your mind, in your connection to your surroundings, the universe, God. You just need a path to find it. 8/31/09
Tuesday Night we ate at Jose Pepper's, and Kelsey sat up well, by herself, looked as if she was falling forward, then caught herself, set herself back, and smiled. Doing it several more times, she would laugh. "That is my new trick...Balance!" Many bites of refried beans, some rice, although didn't quite know what to do with that. Most of everything stayed in. Really seems to like the cornbread! Eating like a big girl. Mommy says "Soon, we will have to buy her own kids meals." [1/2 hour to write these posts! not complaining, just...wow. 1/2 hour to review all that Kelsey did this weekend. all the smiles, all the joy, and accomplishment, pride, excitement. relief. all reviewed, in 30 minutes, really, writing all about the fair would take an hour.] IT is so nice, and refreshing, to see her. I have always been a quiet champion of Kelsey, and knew she would be able to do whatever she wanted. I have always believed. It is so nice to just see what seems like all these switches coming on. She will be walking, crawling, etc, just soon after 2 years. Just seems like such a little person now. Just so connected to her now. It could be difficult for someone to do anything other than work with her, while seeing these great results! I think that is the best thing for her. IT is a blessing that we don't have someone to watch her, and just include her in everying. Looking back, I told her the other day, asked if she knew how lucky she is. I asked her if she knew any kids her age who had gone to Disney, on a cruise, to a different county, to concerts....heck, I think I just figured out she has been to more concerts than I did prior to 21! Likely more in 23 months that I did in 23 years! I think she just gets to see and do so much, it is helping her grow and see all she could be doing, where most kids in a similar situation would see minimal, and "normal" kids would just be home with a sitter often. I think this is paying off for all of us. I think we have more fun including her and showing her things than just doing it. Sure, away time can be nice, but I get alot out of having my little buddy just constantly looking around, and looking up at me and smiling, talking, having a great time. I am blessed. 8/26/09 7:45a
~Daddy
Labels:
cerebral palsy,
cp,
fun,
grateful,
intelligence,
kelsey can,
motor planning,
smile,
thankful
Thursday, November 5, 2009
For AJ
Kelsey didn't feel like doing this for AJ and me in the pool today...
But boy did she later...
But boy did she later...
Labels:
cerebral palsy,
cp,
kelsey can,
motor planning,
PT,
thankful
Thursday, October 29, 2009
What I Decided to Do Today (Wordless Wednesday as some blogs like to call it)
(ok if you know me you know I can't leave it without words...Kelsey did independent "side sitting" for at LEAST one to two minutes before repositioning and probably a total of 5-7 minutes!)
Labels:
cerebral palsy,
cp,
grateful,
intelligence,
kelsey can,
motor planning,
PT
Thursday, October 22, 2009
The Green Walker
So here I was about to take this borrowed walker back to school because Kelsey screamed when put in it, of course she proved me wrong and indicated that she wants to borrow it a little longer. :)
Daddy has been working with her in it some and yesterday she decided to walk backwards in it from the kitchen to the front door.
Then daddy took her outside and she did the above. She is amazing in her effort and determination.
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