Welcome to Kelsey Can at www.KelseyCan.com

Konnor's Birth in Pictures

2011-10-12T16:39:00.001-05:00

My awesome photographer (and friend) captured these images the day of Konnor's birth. The beauty of the pictures, the way she captured the fear, anticipation, relief and joy in my eyes through the lense of her camera will be something I can never thank her enough for.

Please visit her at http://www.erinjensen.com/ if you are in the Kansas City area and need an awesome photographer.

I can't seem to get the picture show below to work. If it doesn't for you, go here.

Down the Road

2011-10-03T16:50:00.003-05:00

I do not think that I can adequately express what it feels like.

To breathe.

To just enjoy.

To not have a cloud draped delicately over our heads.

Four years ago today we sat in a room at the children's hospital with a team of doctors, our parents and a Carousel nurse.

We were told of the "couldn't"s, we were told of the "wouldn't"s.

We were told that it was ok if we chose to do some things that we gratefully have never had to seriously consider.

It was Bryan's birthday. We left our hospital "home" to "celebrate" with pizza that night returning to a world of unknowns that evening.

We still have many unknowns, but also many healed scars.

Today is Bryan's birthday again.

But tonight I will go home from my first day of work back from maternity leave and hug my four year old and her brand new 6 week old brother.

And I will really celebrate.

More to come

2011-08-21T07:32:00.002-05:00

But for now....

http://lundenlou.com/blog/?p=408

(Over)Due

2011-08-15T15:00:00.005-05:00

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.

Bridging two worlds

2011-02-26T21:59:00.002-06:00

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.

Moving Moving

2011-02-01T20:26:00.005-06:00

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.

Checking Out

2011-01-25T21:19:00.002-06:00

Sometimes it is so frustrating to be Kelsey's parent.

I absolutely love her dearly.

I could do without some of the baggage that comes with her.

Kelsey continues to cognitively progress.

I have not, however, seen much progress in other areas.

The questions, then, that come as a result are:

*Is what we have been/are doing still effective?

*Do we need to change course and try a different technique/environment?

*Is it valuable to continue to pursue everything we are pursuing or would Kelsey be happier just being a three year old without a vigorous individual therapy schedule?

*Are we spinning our wheels, the wheels of Kelsey's therapists and Kelsey's own by continuing to follow these pursuits?

*Would Kelsey develop the same skills on relatively the same timetable regardless of our action or inaction?

*Would scaling back our schedule cause her harm?

The problem in all of this is that there are no easy answers.

I do know that this is a marathon that I have too often treated as a sprint.

And yet the fact remains that Kelsey has far exceeded medical professional expectations of her at birth.

Is that a result of action, therapy, and dedication? Or is it simply the result of love?

Get More: Reality, Kenny Chesney, Kenny Chesney Videos

A Repeat Visit

2010-12-14T23:34:00.001-06:00

When Kelsey was very, very tiny, a jolly man in a red suit came to our house. (You can read about that visit here.)

Last night we were so very fortunate to get the privilege of a repeat visit.

Actually, we got a small preview of what last night would be like when we ran into Santa John at the Alexandra's House party. We saw Santa across the room, but thought we might not bother him since we knew we would see him at Kelsey's house on Monday.

But Santa saw Kelsey too!

From across the room he exclaimed, "Kelsey" in his big deep voice.

She popped up to attention and she began taking steps over to see him. All the way over Santa was so kind to encourage Kelsey in her walking, throwing in a "Ho, Ho, Ho" here and there.

He was amazing. He told Kelsey he had been watching her website, knew ways she had been being a good girl, and he even commented on her latest squeaky shoe video. Mind you, Santa didn't know we were going to be at the party. Santa just KNOWS.

Kelsey visited briefly with him there and he asked her if it would be ok if he came to her house on Monday. She got a very large grin on her face. This girl is very into Santa this year! He also told her that he would be bringing a very special present for her.

(waiting for Santa)

Last night, Santa arrived much like he did three years ago. You could hear the jingle bells coming up the sidewalk...

Only this time, Kelsey was awake and watching for him. (she was sleeping on his arrival when she was a baby)

Santa held her in his arms. He told her about the jingle bells he carried and showed her how one came from each of the reindeer. We also all learned that Fred is the elf in charge of the reindeer and that Mrs. Claus requests that we only leave Santa two cookies on Christmas eve!

He told her to "Always remember that Santa loves you," just as he had when she was a tiny baby.

He gave Kelsey to Mommy and pulled Kelsey's present out of the big sack he carried.
It was a very special gift!

Santa has to cover up when he is on his sleigh delivering presents and Santa decided to share the blanket from his sleigh with Kelsey! (Santa said that whenever he gives away his blanket a nice family makes him a new one.)

Santa's blanket even has jingle bells on the corners of it!!!

Kelsey snuggled with Mommy as Santa took out his big brown book of good boys and girls. Guess who's name was on the first page?

He went over all the ways she has been a good girl, talked about her teachers and friends at school, and how well she was walking in her Kidwalk and talking with her communication device. Santa even knew that her favorite color was purple!

Santa must be taking good notes!

Kelsey was just delighted with all of this information that Santa knew.
Kelsey got back on Santa's lap for a story about how his sleigh came to be and how reindeer came to be the animals chosen to pull it. (He tried elephants first, but that didn't work out so well.) Kelsey responded verbally to Santa as he told her this story.

Then Mommy and Daddy came over for a picture with Santa and all of us.

Kelsey gave Santa kisses on the cheek and I think Santa really liked them.
It was time for Santa to go tend to his reindeer so I told Kelsey to tell Santa "Merry Christmas" with her Ipad. She did. And then she proceeded unprompted on to the "Santa" folder that I had made for her to talk to Santa with.

She asked Santa "How are Mrs. Claus and Rudolph?"

Santa told us that Mrs. Claus was doing well and that Rudolph was busy working out to prepare for the big night coming up!

She told Santa "Thank you"

Santa said that it isn't often that he gets to make happy repeat visits like ours. It reminded us how very fortunate we are with Kelsey's continued health and progress.

Thanks Santa for everything! and Merry Christmas!

Happy Kelsey Enjoys Her Back Scratched.

2010-12-06T20:39:00.001-06:00

Kelsey's Steppin in Her Squeeky Shoes

2010-12-06T00:01:00.001-06:00

Good Advice

2010-11-09T22:09:00.002-06:00

A good friend told me:

Your job is to teach Kelsey about Kelsey and what she is capable of. It is not your job to fight the world to understand who Kelsey is.

You cannot carry that weight.

Teach Kelsey who she is and what she can do and she will continue to astound them.

.......................................

Too many times I worry about how people perceive Kelsey. Do they see how smart she is? Do they see past everything to see her gifts?

Can they see what I see in her?

Focusing on just Kelsey and what she believes about herself is freeing.

And that is a big enough job in itself.

The Hospital Remembers

2010-10-19T13:34:00.002-05:00

There aren't alot of people in my life that remember my baby girl.

Not the subject of this blog, the other one...

The one in heaven whom I never forget.

Rarely a day where I don't think of her and yet I don't know exactly what to DO with her.

She is there, she is real and yet she is not.

I am filling out the "family" folder in Kelsey's communication device when we first received it.

It is pre-populated with "brother", "sister", "mom", "dad", etc.

I delete the "brother". I delete the "sister".

Then I carefully go back in and add...

I choose an "angel" icon and program it to say "Kaitlyn" when pushed.

Weeks later I am working on the programming again.

My husband hears the device say "Family".

Then "Kaitlyn".

He says "Don't make her sad." (meaning Kelsey)

I suppose I don't know what to do.

I don't want to hide her from Kelsey.

I am sure that Kelsey feels the presence of her, probably at the most basic level.

She shared my womb with her.

And yet it is alot for a three year old to comprehend.

Kelsey's cognition is unaffected.

How we approach this now, how she grows up understanding the story of her life and how she came to be, is formed now.

Is "the event" that happened, that took her sister and harmed her, something to hide? Is it something to talk about?

I know the day will come when Kelsey will ask why she is different.

What will my answer be?

How do I let her grow up knowing her story and feeling "good" (comfortable) about it?

What are the right words and when do I use them?

__________________________________

I arrive home to a box full of mail.

Included is a tiny envelope.

I know this one is for her.

Even though Kelsey's school is also at this hospital, I know.

Every year it arrives, a special night just for her.

Usually it is Christmas.

I did not go the first Christmas. There was an ice storm and it was cancelled.

I do not think I could have gone anyway. It still hurt too much. Too personal to go to such a public place.

The second year I went. All bundled up with my baby girl in the lobby of the hospital.

Some one offered to take Kaitlyn's candle and light it for me, so I didn't have to take Kelsey in the bitter cold outside.

I stood in the doorway inside the hospital with Kelsey in my arms. I strained to hear her name. I love to hear her name.

Last year Bryan, Kelsey and I went as a family. It had snowed. They held it inside in the new part of the hospital. We made a luminary with her name and the messages to her. I got to go up to the front and say her name.

We put her luminary in front of the big picture windows. The snow was falling softly outside in the courtyard.

It was beautiful.

This card recently was for a different event. It went up on the refrigerator, just a as the reminder for Kelsey's field trip did.

October is infant loss remembrance month. Fitting for me because it was the girls' due date and when we chose to bury Kaitlyn.

The event was great. As I was leaving, Bryan said to have fun and the irony of "having fun" at a baby loss event was not lost on me. But it is fun in a way. To know you are not alone.

I saw families and couples, new little babies honoring older siblings they never get to meet until heaven. What touched me most was a daddy there by himself to think about his son.

There was a blonde little girl running around with her balloon.

I know that the hospital truly does not "remember". I know that some computer somewhere kicks out our names on a list that we would never choose to be on.

But at the same time, someone designed that invitation. Someone made the program. Someone address the envelope. Someone licked the stamp to send it to my home.

And for a moment, someone remembers.

Kelsey Roller Skates in her Kidwalk

2010-10-08T10:17:00.002-05:00

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.

Kelsey discovers her first kitten

2010-08-25T11:24:00.001-05:00

Help us Raise Money for IDC

2010-07-28T09:45:00.004-05:00

http://www.firstgiving.com/kelseycan

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

Counting Our Blessings

2010-07-12T01:56:00.002-05:00

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.

Presume competence

2010-07-07T00:53:00.003-05:00

I really liked this blog post and the links within.

It is the theory I have believed in all along with Kelsey. Presume intelligence and figure out a way to help her get her body to cooperate enough to show us/achieve what she wants to do.

http://teachinglearnerswithmultipleneeds.blogspot.com/2010/06/living-least-dangerous-assumption.html

Communication update

2010-06-15T19:56:00.001-05:00

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.

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 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.

GoTalk 4 Videos

2010-06-15T19:49:00.006-05:00

We needed to send our GoTalk 4 back that we were borrowing so we took a few videos to remember it!

Perspective

2010-06-11T09:38:00.000-05:00

Being Kelsey's mom means that I get to ride a rollercoaster everyday. The problem is, rollercoasters are fun as an occasional treat, but not exactly a desirable everyday fare.

Yesterday Kelsey, Daddy and I went to breakfast. Our waitress asked us when we were almost done what Kelsey's diagnosis was. I told her Kelsey had cerebral palsy. She said her granddaughter was born with an inoperable brain tumor and wasn't supposed to live past 6. She is 10.

I said, "that's great." thinking it is always great to outdo a doctor's prediction.

She said "no" that her granddaughter could do nothing for herself, was blind and had 135+ seizures per day.

I did not know what to say.

She said she had been watching us with Kelsey. That she "took her hat off to us" b/c Kelsey was such a happy little girl. That she wished her "Haley" could experience that.

Someone always has it more difficult than you do.

Get a Job!

2010-05-03T19:00:00.001-05:00

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.

We had fun and it was definitely a texture (sticky and crunchy) that we don't get to experience everyday.

Funny Girl

2010-04-07T16:25:00.002-05:00

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. :) )

The Hope of Easter

2010-04-04T08:38:00.004-05:00

Death is a scary thing. At least I always thought it was.

When you are young, heaven sounds kind of boring compared to your childlike dreams of going to the circus or park.

As a child, your older relatives die and then you no longer get to see them. Gone.

But what happens when it is your baby that dies?

This is not the natural order of things. A mother is not supposed to outlive her child.

It is also something that makes people uncomfortable to talk about.

In many of my circles, it is as if Kaitlyn never existed and Kelsey has no disability...because no one talks of them. It is easier to ask if you have seen the latest movie than to ask how Kelsey has been doing in therapy or if I ever still think of Kaitlyn (I do. everyday.)

I heard the end of this song yesterday on the radio:

Steven Curtis Chapman wrote this after the loss of his 5 year old in a accident.

This is the promise of heaven.

To him, "heaven" right now is the ability to be reunited with his little girl and do all the things they used to do.

To me, I can picture in my mind's eye my two little girls running around in little white dresses with long blonde curls in a garden somewhere. (this is what I always pictured while pregnant before Kaitlyn died, only it was my backyard...)

My view of death has changed since Kaitlyn. While I am not in any hurry to get there, I am no longer afraid of it.

It has solidified the fact that because I have a personal relationship with Jesus and he died for my sins that I will be in heaven one day where my only job will be to praise Him.

And my little girl will greet me there and someday her sister, Kelsey, will run and play there too.

Happy Easter Everyone!

Adaptive Easter Egg Coloring

2010-04-01T11:38:00.012-05:00

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.

Kelsey thought it was really funny to squish the bag back and forth.

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.)

The stamp kit was also fun to place in Kelsey's hand and help her stamp.

I think the combination of the activities made it pretty successful and we sure had more fun than using an old, boring wire handle to fetch eggs out of a cup!

The Harm of Low Expectations - aka "The File"

2010-03-21T14:47:00.001-05:00

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.)

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.

It is what professional review before meeting Kelsey which explains why they expect a certain level of ability. It is the paperwork which gives people misconceptions about Kelsey before she is ever carried through their door.

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.

She is much better.

Does she have a brain injury?

Yes.

Has she worked a way around it, improving every day?

Absolutely.

Fun with Kelsey

2010-03-05T09:05:00.003-06:00

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!

Yes, No, Maybe So

2010-02-11T18:26:00.002-06:00

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's With Me" ~ Collin Raye

2010-01-27T23:38:00.004-06:00

She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
as they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me

I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my weak,
Though she can’t speak,
She let’s me know she feels my love when she’s with me

I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me

Communication

2009-12-18T22:51:00.003-06:00

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. :)

Kelsey Repeats Laughs

2009-12-14T01:34:00.002-06:00

Remembering A Very Special Visit

2009-12-05T23:37:00.001-06:00

Two years ago, Kelsey was just two months old. We had been given a poor diagnosis at birth based on her MRI on her brain. When we took her home from the hospital at birth, we had Carousel coming to see us weekly to make sure that she was growing, etc.

There was a very special man who volunteers his time to come out to the houses of kids who can't or shouldn't be out and in line to see him in the malls, etc.

He was the real Santa Claus.
I can't explain to you what he gave to us that Christmas. Everything was still so new and so scary. I held my precious baby and knew that she was "in" there and that I would find her. I knew that she would "make it" and that she would be ok, despite what we may have been told.

When Santa came to our house, he knew it too. He held Kelsey in his arms like I am sure he has held a thousand before. He was so comfortable with her and with us. He had jingle bells you could hear coming down our sidewalk before he rang the doorbell. He had a key around his waist for those without chimneys. He was the real Santa.

He told the sleeping baby Kelsey to "Always remember that Santa loves you." and we felt loved too.
I got his address thinking I would get a thank you off to him. Somehow in those early, overwhelming days there was never enough time to do that. But I have thought of that visit often.Today, I found this website via some other site, clicked Kansas and sure enough Santa John is there spreading more love and hope than I can explain.

Merry Christmas Santa!

This Week's Thankfulness

2009-12-04T10:24:00.005-06:00

* 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.

Dreaming with Daddy

2009-11-15T11:11:00.000-06:00

i was laying next to kelsey holding calming her down from feeling stuffy, crying, and panicy. I pulled the comforter over her, and was rubbing her face gently. She had gone from wide awake to heavy eyes almost instantly. About 2 minutes later, she was snoring.

Trying to sneak away, as much as I could pull myself to do, from this amazing moment of beauty, I moved my leg, and she moved a bit, as if she would wake back up. I waited then moved her arm, same only stronger. I waited, and pulled the comforter over her ear. She was out.

I was just ready to get up, and she started giggling, softly, then heavily, with this big smile, then eyes wide open. She had either had a happy dream, or the comforter on her ear tickled, or something.

Just so cute, but yet, now awake again, just when I thought I had her calmed. She looked at me again, smiled beautifully, and went to sleep.

~Daddy

Daddy's Unedited Notes for your Reading Pleasure

2009-11-15T10:26:00.004-06:00

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

The Missing Piece

2009-11-10T22:54:00.003-06:00

When I saw this picture today, I couldn't help but think that someone was missing in it.

For AJ

2009-11-05T22:30:00.002-06:00

Kelsey didn't feel like doing this for AJ and me in the pool today...

But boy did she later...

What I Decided to Do Today (Wordless Wednesday as some blogs like to call it)

2009-10-29T00:01:00.005-05:00

(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!)

The Green Walker

2009-10-22T22:04:00.004-05:00

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.

Birthday Picture Overload

2009-10-08T21:20:00.037-05:00

Kaitlyn's Angel Bear

Kelsey's Celebration at school

2009-10-07T17:26:00.002-05:00

On the Wednesday class before her birthday, Kelsey brought Minnie Mouse cupcakes to celebrate.

Kelsey sure liked being the center of attention!

And both Mommy and Daddy got to be there!

Kelsey needs a Kidwalk

2009-10-06T11:16:00.000-05:00

A couple of weeks ago, I was fortunate enough to have another mom post on the CP board about their child's Kidwalk Gait Trainer.

I googled it and knew that it was just what Kelsey needed.

I really like that the front is completely open. I like that it supports under the arms (where we hold Kelsey when she takes steps for us on her own).

I like that it has a head support in back so Kelsey couldn't arch herself backward which is what she does after she gets mad in the gait trainer we are borrowing. It has a handle in the back that you could "push" to help or if the child gets tired.

So I emailed one of her PT's and she said that they have one at her special school that we could try...

So on that next Tuesday we tried it.

And it was wonderful.

And I almost cried.

And it was wonderful.

(these pictures are from her birthday when we got to show Grammy and Grandpa!)

Happy 2nd Birthday Kelsey!

2009-09-24T09:30:00.005-05:00

Mommy will do a better post about how much you've grown soon. But for now...

Thank you for all the gifts you have given us and those around you.

We are so very glad you are here with us!

The Cow Says Moo

2009-09-08T18:20:00.002-05:00

Cookie

2009-09-08T17:12:00.005-05:00

Daddy and the Lake

2009-09-07T23:00:00.001-05:00

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 acheiving 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.

~Daddy

.

Chiefs Game

2009-09-04T13:40:00.006-05:00

She's a Good Mommy

2009-09-03T10:53:00.000-05:00

Last Weeks News (AKA Stuff only Grammy cares about)

2009-09-01T17:53:00.005-05:00

Last Thursday was Nancy's last day to be Kelsey's OT at home.

Last Friday we went back to Crown Center for another Free Friday night concert. (last Friday was Eddie Money) This time it was Jo Dee Messina. We had fun again!

First Day of School

2009-09-01T17:44:00.004-05:00

Last Wednesday was Kelsey's first day of her new toddler class. Of course we took pictures! (Most kids don't get to take 1st day of school pictures until kindergarten! Lucky girl!)

Kelsey with book from Mommy and Daddy to start the year

Kelsey with book from Grammy and Grandpa

Kelsey with her new class at school

My Little Flower

2009-09-01T05:51:00.005-05:00

Matthew 6:28-2

"... See how the lilies of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these."

At the Fair Pt 2

2009-08-26T23:58:00.000-05:00

We had so much fun the first time, we went back for more this past weekend. This time we heard Brooks and Dunn sing and then went back to the carnival for more fun. Kelsey sat on Daddy's shoulders for part of it, the first time we could really feel comfortable in letting her do that. Her balance is so much better now, and she just perched up there and hung on.

She liked the lights and music, and we sang together. Yes, she was very vocal and tuned right in.

At the carnival, Kelsey took several steps. We love it when she "walks" for us.

We watched the rides go again. One of the ones she really liked to watch were the giant bears.

As we were watching them and she was standing like such a big girl, the attendant came over and asked if we would like to ride. We said we didn't have tickets and he said he had just the bear for us.

We all enjoyed a funnel cake with plenty of powdered sugar on top.

We enjoyed visiting and petting the horses in the barn and Kelsey tried out the wagon.

This wasn't the first time she tried out a wagon, though she probably doesn't remember this one...(at ~22 weeks in Mommy's tummy - June 2007)
We also again collected several stuffed animals from friendly carnival workers along the way.

Here are some other pictures of the fun we had at the fair.

Just A Swing'n

2009-08-26T21:07:00.000-05:00

Kelsey did so good yesterday at school. Gramma Karen even came along to join in the fun.

The best part was swinging on the swing. She sat on the swing all by herself while Debbie spun her around.

Her arms were WAYYYY UP holding on and she was able to balance in this position while holding on. What a gift. (she had only been able to do one arm up at a time while she prop sits)

Hopefully soon this will translate into being able to be hands free while sitting!

Amazing Weekend

2009-08-26T10:45:00.013-05:00

Amazing Weekend. It was quite an eventful weekend for Kelsey. Friday Night at Crown Center at the free Eddie Money Concert, she enjoyed the sounds, music, and sitting next to a waterfall wall fountain, as well as watching again the synchronize fountains the kids are playing in.

Saturday, Daddy went to watch the airshow from the bluff , and took Kelsey. She was especially vocal when the f-16 and f-18 flew over, loudly. She loves talking to new noises, such as the vacuum cleaner. She saw a little boy, who was 3 1/2, but Kelsey was taller than him. WE stopped by crown Center between airshow events, and watched the same fountains in a synchronized show to music, which includes water cannons shooting many feet in the air, a couple stories high.

She was talking to the fountains, and lunging toward them. I wanted her to see them in the daylight too.

Between performances, we went back to the car, and she sat in the front seat "unattended", needing no help staying up. I held the bottle for her, while actually laying against the car, and she quickly ate for me, about the best she has ever done, with few breaks, and mostly without spilling a drop. Had about 3 ounces in about 5 minutes.

Getting very good at eating, and had some bites of my hamburger bun.

Sunday, we both went back to the show to see then best act, the F-16, and somehow it got delayed about 30 minutes, and Kelly talked with lady that gave her some nice comments about how cute Kelsey is, and about her relative with Downs Syndrome, and how he does better than the doctors said.

We also went to an free exhibit back at Crown Center of art made of Legos.

It seemed refreshing for Kelly to hear this. I am grateful for all she is doing, and the more I focus on that, she just seems to be exponentially excelling at doing things.

We went to Applebees to eat quesadillas, and she had some of that too. sitting up, paying attention to all that is going on around her.

Having her own ideas of going to look at things, she was trying to go see the mini blinds they have. Balancing better. We were leaving, and her tone had her arms limited to about a 45deg angle up, but put her feet on the floor, and picked her up hopping along, and she loved it. I would think her arms would hurt, but she liked it.

We did the steps, one by one, and she talked and laughed, and kept saying, go.... go. Also through the parking lot. Just like more switches came on.

She seems to be getting it all together, making all her connections. What an amazing weekend! 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 re-fried 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 everything.

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

Kendall's Hope

2009-08-25T09:33:00.001-05:00

One of the things about having a child with special challenges is you are constantly seeking information, constantly looking for someone like you that is on the same path as you, hopefully a little further along and still going. :)

One of our friends that we follow online is going through some tough stuff right now. Kendall shares many of Kelsey’s diagnosis’s. Kendall is younger than Kelsey and her strong mommy has faced a lot.

So please go give her mommy some encouragement if you have time and prayers if you have the inclination.

http://kendallbriggs.blogspot.com/

Thanks!

2009-08-22T02:21:00.002-05:00

8/18, early am. I brought Kelsey in the office with me to do some work, as she was not sleeping, in her bed, in ours, in her seat. She was fine hanging out with me sitting in her highback chair, which sits her up tall. She sneezed strongly, and leaned forward. Then, as I am looking at her and talking to her, she rolled over the side and face planted in the carpet. I went and grabbed her to see if she was OK, and she had her pout going with that lower lip almost over her nose! She was ready to cry, then looked around at where she was, as if to say, "Wow, i did that myself! I just jumped up out of my chair! So she just went with arms and legs, and wiggled and crawled (scooted, crawled about a foot, and talked and talked, excitedly about it. She is getting good at coordinating the rolling side to side while pulling a leg. Pulling her arms up, she still resembles a turtle a bit, very slow motioned and deliberate.

2009-08-22T02:18:00.000-05:00

Kelsey's first downpour rain shower I can remember. We got out of the car, and just got dumped on. She jumped and shook and complained, and then we got inside, and she laughed , and seemed to think it was pretty funny. 8/19

2009-08-22T02:14:00.000-05:00

I was going to Sedalia, I was going to the Fair, to see how many people, would love our Kelsey there....

At the Fair

2009-08-16T13:55:00.000-05:00

We just got back from the MO State Fair. 8/15. Kelsey loved it.

We saw a Shriner's food booth, and since they are going to help with Kelsey at one of their hospitals, Kelly thought we should buy something from them. So we did.

Kelly took Kelsey out of the stroller and said I want to introduce you to Kelsey". You, the Shriner's, are going to help her at your hospital. She has Cerebral Palsy, and we just wanted to say thanks for the help you give many children like Kelsey.

The man working said "oh my" when we mentioned CP. He brought back the food we ordered, and handed back the money and shook his head with a smile.

I was sad they didn't take the money, as that was the main point, was to help out those helping us out. But, we are great receivers of gifts, so we simply accepted with a sincere thank you.

We listened to the concert, and then went through along the way to the carnival. Kelsey loved the lights. She was talking, and jumping. She loved seeing the giant ride-in bear, bumble bee, and fish rides.

She loved the lights and music and watching the adult rides go around and around. She was talking to the Ferris Wheel at the end, even after it seemed like she was tired out.

People loved seeing her, talking to and playing with her. A worker played 'get your nose', and she laughed. I was playing with her with them, and showing her the stuffed animals, lights, etc. She was so happy.

A carnival worker called us over as we were walking away. Very strongly he urged me to come back, saying "Dad, come here". I turned around, and he was waving me over very animatedly. He called to another worker on the other side for a toy. He said, "No, the big one!".

He gave us a large lion, larger than Kelsey! Here is the irony. We always say to her, what does the bear say, and she says aaaar, after we say roaaaaaaaar, well, really, now we don't even have to say it but after she does. Roaaaaaaar! That's right Kelsey. Both the same for the bear and the lion. My parents bank had a one day give away, and I went in to do some business for them, and a worker told me to sign up for the bear give away. I put in an entry, and it was for a bear that Kelsey had seen a couple days earlier, and when i showed her, and said what does the bear say, she said arrrrrr, as usual. I thought, that would be nice. Now, here was the chance to get that bear for her. Albeit a bit too big, taking up floor space.

I thought later, I should have put my parents name in too, Kelly's etc. Even Kelsey's. I Found out later it was just that one day, and somehow, we didn't win. Seems odd. It was a perfect fit for her, perfect timing, etc. But just not there, not meant to be.

So now, back to tonight, and the LION. The other animal she talks to. FREE. A gift from...... ? Is that a sign, or what? Grateful to know someone is watching over us/her, and what a sign to show us! Helping her talk as best as she can at the moment.

Walking back with her in the stroller and a lot of the way back in the car, she just talked and talked to it, each time we showed it to her and or made the roar. Now, that isn't all.

The trifecta: Another worker gave her a small colorful stuffed fish. Something that will go great with Kelsey singing "all the fish are swimming in the water" song. People love giving Kelsey things. We are grateful to get them, we are great receivers of all that life and people provide us, and put everything we are given to use. We are grateful we can share her smile, personality, and adorableness with so many.

We are thankful for a second great night out in a row with her having lots of fun, for Kelsey, and us. How much fun and joy to see her react and enjoy whatever we do with her, at home, or out and about.

Tonight, she thought she was at Disney World again!

~Daddy

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Dancing with Daddy

2009-08-16T13:45:00.002-05:00

I walked in the room and danced to some funny music, and Kelsey just laughed. and kicked, running/dancing in her seat, yet, she was looking at the ceiling. She must have terrific peripheral vision. I cannot tell how in the world she could see me from that angle, and i was quiet enough she didn't hear me dancing! 8/15

~Daddy

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Friday night movie

2009-08-16T13:30:00.004-05:00

Friday night we went to Crown Center, we thought to a concert, but it was the outdoor movie.

They have these computerized fountains that spring up from the pavement, then disipate back down to a pool under the cracks. She just stood in it, and watched them come up in sequence, one to the other, and talked each time, all excited, time after time, talking each time they came up, or went away, saying "Go!"

We venture into the Hotel, and she loved the waterfall on the rocks, the fountains out front too.

We would say tired, tired tired, as she had bent over, looking tired, and then "I'm awake", and she would jump up! Over and Over again. Just anticipating it, and laugh.... then wait and look for us to make sure we were both watching her, and even jump while bending, up, and laugh loudly.

~Daddy

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Kelsey goes to a Party

2009-08-16T12:58:00.004-05:00

Kelsey went to her first "friend" birthday party last week. She had so much fun.

Isabella turned two years old! and we were able to help her celebrate.

When we arrived, Isabella was sitting in her chair with her magic wand, looking like a sweet birthday princess.

Both of the girls seemed pleased to see each other after two weeks apart. (school has been closed for vacation)

Kelsey brought Isabella some bubbles and a Dora shirt. It made me so happy to see Isabella get excited when she saw Dora on the shirt!

We also got to swim in Isabella's pool. Kelsey had such fun kicking and playing. Isabella shared her turtle float. It was perfect because it allowed Kelsey to prop with her hands in front of her to keep her head up nice.

As the swimming wore on, I would ask Kelsey if she was ready to get out. She would say "OOOOOOOO" (no) and start kicking furiously.

We had a great time and it was sad when the party was over!

Daddy's finally gotten around to updates

2009-08-04T18:14:00.002-05:00

Kelsey just talked to me, said about 3 things, multiple times, and smiled after each, also reached up and grabbed and held my chin for quite a while, then I touched hers, and she smiled, now singing "She's Everything" by Brad Paisley , she's singing back to me, and now now Emerson Drive 7/15/09 12:26a Last night, for 20 minutes, rode a new board with rollers, like a skateboard, only wider, while sitting Indian style, would say go, then laugh when it hit Kelly's legs. Did it over, and over and over. Then, laid herself forward, and when we said up, up, she would sit up and balanced!

I went in to looked at her last night, was sleeping. I said a prayer for her, and her hand was open, fingers out, sleeping soundly. I gave a kiss toward her, with minimal sound, and in her sleep, she smacked her lips a kiss back 7/4/09 2:39p

2009-08-04T17:47:00.001-05:00

Found an interesting way of feeding Kelsey I was running around the house doing projects, from room to room, and would give her a bite of food, maybe 2, then run to do something, coming back through, another bite, and on, and on, over about an hour. She ate the whole jar of food with about 5 scoops of rice cereal, plus some milk in between. 8/3/09.

I played with Kelsey tonight, she was close to crawling again, gets a bit of succes and the legs go wild! just not quite all together yet. Not yet shifting the weight back to the legs, or if does, just once, then flat on the stomach. She was THROWING the spinner balls off her high chair tray. One was about 8 feet away. We tried walking, using her feet on my feet, but that frustrated her after a couple steps, think might have been overextending. Then i would hold her up, and counting with my feet, left, right, saying ONE, TWO, and bounce her with the steps, which made her eventually stop the hop and take steps. The whole time, when i paused, she would say "one". So later, i was holding her and she just started a whole sentence or paragraph of something. I said, " good talking Kelsey, I love you Kelsey", and she replied, "I love daddy", or "I love you daddy", just plain as day on the I love and daddy, but not sure if the you was there or just a transition sound to Daddy.8/3/09

Two Step

2009-07-24T08:59:00.004-05:00

And not the country dancing kind.

Yesterday Kristin, Rachel and I were working with Kelsey at school in her corner chair. She had two shakers, one in each hand.

We were having her follow directions like usual.

I asked her to do "right arm up and then *boom* (putting the two shakers together)"

And she did. She followed a two step instruction, pretty quickly too.

I googled this and you should see this by 2 to 2 1/2 in "normal" development.

Yay for my smart girl! Mark that milestone as EARLY!!! :)

Kelsey had a really good day with Kim, her vision teacher, on Wednesday.

She looked and played at the same time with some circles on the light box, even following her hand as she moved it.
*Really really big deal for Kelsey*

Usually she looks then looks away and then moves her toys.

I should also say that she seems to have come down with a full case of the "two's", exerting her opinions and being just a little stubborn.

Last week with Kristin, she had her hands in beans and rice (something she usually enjoys). There was even some necklaces and other things to grab at in there. Kelsey was not interested.

We buried her hands which will usually make her take them out. Last week she just sat there until I told her she could be *all done* if she took her hands out of the container.

She then started working them out.

With Kim on Wednesday she stopped playing with the circles. We tried and tried and waited her out but she just stilled her whole body and stopped the "talking" she had been doing. She even started playing with the spit in her mouth, making noises with it, to entertain herself.

I must say that I enjoy these showings of her spirit and opinions, and it really is soooo normal. I love that cognitively she is going through this stage right when she should, but it sure makes therapy a challenge!

Bumper Car

2009-07-13T23:41:00.007-05:00

Trina left us a cart with wheels when she came to visit today. We decided that it looked like a "bumper car" to us.

It is amazing to think that in December she was just learning to prop sit all by herself and now she can play and play and bump and lean and still maintain her balance the whole time.

We played a long time and these were taken near the end.

(wouldn't be a Kelsey photo session without at least one "open mouth" shot)

21 months old and cuter than ever

2009-07-05T12:00:00.000-05:00

Kaitlyn Lily

2009-07-01T16:42:00.000-05:00

Memorial Day, two years ago, I felt my girls dance as I watched the fireworks with Bryan, soon after I first felt them move. Kaitlyn particularly liked the show.

Kaitlyn was always my morning girl, doing her best kicking early in the day. Kelsey always liked nighttime best. (She still does!)

This past weekend, two years ago, my mom and mother-in-law and I went to registry event at Babies-R-Us. I wondered why the girls didn’t move more to the two glasses of orange juice I had. I loved saying that I was having twins when we went around the group of expectant moms. The registry would never be used, though my sister and Aunt Susie did give me a wonderful shower after Kelsey was here.

Today, two years ago, my Kaitlyn was gone and I didn’t know it though I did have a constant worry for the girls.

Tomorrow evening, two years ago, I told Bryan, standing in our office, that I was worried about the baby girl on my right (Kelsey) because I wasn’t feeling her move much. It turns out I was feeling Kelsey’s legs on Kaitlyn’s side.

July 3rd, two years ago, I wondered why the girls weren’t moving as much as I thought they would with the glucose drink for the gestational diabetes test. We watched the monitor of the ultrasound machines first go to Baby A (Kaitlyn) then quickly, unexpectedly go elsewhere while the tech asked when the last time we saw them was.

I struggled to form the words "Baby A is dead." as I called my mom on the cell phone.

That night, Bryan felt Kaitlyn’s presence downstairs while my parents were sleeping in our living room. He thought it was me, but I was upstairs. The next morning he awoke to a single lily in the garden barrel, dancing in the wind like she had danced on all the previous ultrasounds. That is why her middle name is Lily.

July 4th, two years ago, my parents, Bryan and I watched the fireworks from a parking lot near home. Two babies in my tummy--one alive, one still.

Two years ago, I desperately searched for a name for Baby A. She had to have a name. It was the only thing I could give her.

Two years ago. And still it hurts.

I wish you were here with us – Kaitlyn Lily. I wish you and your sister were both here, both whole.

Kaitlyn Lily Dahl
Born Still
September 24, 2007
Shortly before 10 pm
11 inches long
7.3 ounces

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Here is a song I couldn't embed.

http://www.youtube.com/watch?v=5Ff5qJrPT7k

It’s cold in here feels like everything’s upside down
I can feel you talking but I can barley make out the sound
I been kicking around these parts, feels like a year
I’m gonna change this world if I ever get out of here
She wants to dress me in pink, paint’s my bedroom blue
And I just laugh to myself, cause only I know the truth
This love is my only emotion
Haven’t learned any fear any pain
It’s kind of funny with all this commotion
I guess they’ve got me, to blame
They don’t even know my name
They don’t even know my name

Well I’ve never felt so ready, think it’s finally time
Cause that big old world is waiting, and it’s mine all mine
Just then everything got real quiet, it got real bright
And a man took my hand said don’t worry, Mommas gonna be alright
Then he opened the gate, & I followed him in
Said you can wait right, here till it’s your turn again
And his love is the one true emotion
Heaven knows no fear no pain
I never got to set my wheels in motion
They loved me just the same
And they didn't even know my name
Didn’t even know my name
You loved me just the same
And you didn’t even know my name

And two that I could.

Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair

[Chorus]
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held

This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow

[Chorus]
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
[Bridge]
If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our savior
[Chorus]
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
We'd be held

This is what it is to be loved and to know
That the promise was when everything fell
We'd be held

This is what it means to be held.....

Ready for the Hokey Pokey

2009-06-19T13:20:00.000-05:00

Kelsey did something amazing yesterday. She once again showed us how smart she is.

She was at school doing OT with Kristin with Rachel (OT student) and me (Mommy). She was sitting in a corner chair and had two shakers (like maracas), one in each hand.

Kristen told Kelsey "up left" and she raised her left hand up. We all looked at each other. She told her "up right" and she raised her right shaker up.

I believe this is where an "oh something-or-other" came out of my mouth.

We proceeded to test her by mixing up the order, asking her to go "up" and "down," and doing it over and over. Each time she got it correct.

The only time she didn't was when she did a slight "up" with her right hand followed by a large purposeful "up" with her left. (She is more functional with her right hand so I think this was her way of getting her body to work.)

She hasn't really shown very much ability to raise her left arm/hand up like she was yesterday. Thinking through this this morning, I have a feeling her little ears were listening to Mommy talking to Debbie and Kristin about her using her right more and if I needed to push use of the left since right was more functional for her. She has a habit of listening like that.

I think she wanted to show Mommy that "left" worked just fine. She continued using her left arm throughout yesterday including showing off to Daddy when he got home from work.

It doesn't really surprise me that she knows "left" and "right" because with all the therapy she gets we are constantly saying "left leg this" or "right arm that."

But to be able to know and make her body show us she knows...

That little girl is something.

Ride 'Em Cowgirl

2009-06-16T23:07:00.000-05:00

On Sunday, Mommy volunteered at "Country in the Woods" to help raise money for the Lee Ann Britain center, our favorite place.

This place has been amazing for Kelsey. She works so hard for her teachers there. She loves loves loves everyone there. (and I do too.) We have also made many good friends there including Alayna and LC and their mommies. (The rest of you need blogs!)

If you are looking for a charity to support, this is a great one. As is CCVI (children's center for the visually impaired) where her beloved Miss Kim, her vision teacher, and Miss Nancy, her home OT, come from. (and Miss Taunya, her fill-in home OT too) and of course there is Infant Toddler of Johnson County who coordinates the home services.

Anyway, as part of my volunteering, I got my very own brown cowboy hat which Kelsey was so kind to model in a way that I never could.

T-A-N-T-R-U-M

2009-06-08T13:59:00.000-05:00

This is somewhat old news now. Mommy is just now finding the time to write about it. (It happened a week ago last Sunday.)

-----------------------------------------------------

I think it is official.

It has been coming for weeks, maybe months.

Kelsey is officially a toddler.

It started with a fun game of standing with her AFOs on. We were playing the new storage chest as a drum.

She didn't seem to mind them and was standing so nice, taking turns going *boom* with Mama with Grandma Karen watching.

She also did some nice holding on to the chest and standing by herself for a few seconds at a time.

Then she was *all done*!

I was very happy that she had *stood* in her AFOs for that long. She really doesn't like weight bearing in them very much.

I wanted to leave them on while I fed her supper. She was "complaining" about them, throwing her arms up and down and half crying/half whining.

I told her that I knew that she wanted to take them off, but that we were going to eat supper and then we would take them off.

I put Kelsey in her highchair and Grandma tried to calm her down while I worked on getting her food ready.

Grandma tapped this little fireman figure on her tray and said "Look, Kelsey, at the fireman."

Grandma set the fireman on the tray and Kelsey with her right hand reached and grabbed the fireman off the tray, lifted him up over her head and dropped/slammed him back down on the tray.

I made her calm down and we took one AFO off. Then she got upset again and I made her calm down a little bit before taking the other one off!

Quite the display of fine motor skills so I can't say I was sad about the tantrum!

Big Thursday

2009-06-08T13:57:00.002-05:00

Thursday was a fun day last week.

Grammy and Grandpa were in town visiting and they got to see her work really hard at school. There wasn’t even any C-R-Y-ing

First Debbie had Kelsey practice some crawling. Then she practiced sit to stand. Then she stood up for awhile.

Finally she did some more standing in another walker. (this time without those AFOs :) )

She took several steps again! And this time without C-R-Y-ing

When Kristen and Rachel got there, we went over to the incline mat and did some hands and knees weight bearing.

Boy did she like all the attention a room full of grown ups can give her. We all clapped for her and you should have see her smile.

Debbie helped her get her legs under her and then Kelsey was able to push herself up on her arms all by herself. Such a big girl!

After Debbie left, Kelsey played in the corner chair. She showed Grammy and Grandpa how she can lift a toy up in the air and back down.

Finally we showed Ms. Kristen how Kelsey can take the coin from Mama and we put it in the piggy bank!

We were tired!!!!

After a nap, Tonya came to see us at home. We did some stretches and reaching and some other fun things that Mommy can’t remember right now!

Grammy and Grandpa bought Kelsey an Elmo balloon for all of her hard work! Bet Kelsey thinks they should come to therapy everyday. Mommy doesn’t buy her balloons for being such a good girl!

After we were done at home, we showed Grammy and Grandpa the Deanna Rose farmstead. We all agreed that the cousins should come see it sometime too.

That night Mommy wanted to show Grammy and Grandpa how well Kelsey is coming on crawling forward on her tummy.

Kelsey wanted to show them her rolling.

Over and over again Kelsey would roll when I placed her back on her tummy. She knew she was teasing Mommy.

FINALLY she decided she would do some crawling after Grandpa got down on the floor.

She crawled all the way to Grandpa. It was very cute.

Just when you think she would be done for the day (because Mommy sure was), she was climbing and rolling all over Daddy on the bed while Mommy was dozing in and out. She also crawled across the bed to me after Bryan asked her to. (If you want more details on this, you will have to ask her Daddy because I was toooo sleepy.)

Finally it was time for bed.

The McDonald’s Milestone

2009-06-08T13:57:00.001-05:00

It was bound to happen sometime especially with two parents who don’t cook all that much.

Kelsey had her first taste of healthy McDonald’s french fries and a good portion of Mommy’s lower bun from her hamburger.

You should have seen her legs kick.

She was very excited!

Now if I can just keep her from discovering Happy Meals for several more years!

Little Updates

2009-05-26T13:11:00.000-05:00

Kelsey has been doing several things lately and I keep forgetting to update!

She said "ello dadeeeee" the other day. She also said something similar to Grandma over the phone. She is "talking" more and more. We were calling Bandit at the dog park because he was not minding and she said "andit" (or something like that!)

In therapy last Thursday we tried a walker! She was very mad about her AFOs (foot orthotics) but looked so big and tall in it.

During OT therapy she placed her hand, opened her fingers, picked up and dropped a little red block!

We were playing with her new Fisher Price Piggy Bank I found at a thrift store and I held the coin out for her. She can now open her hand and take it from me! I then helped her put it above the slot on the pig and helped her direct it some toward the opening. She put it in, pushed in down, opened her hand and let go.

The other night we were out with Daddy and Grandma in her umbrella stroller. She stuck her legs straight out and then in, following the directions legs "out" and "in". We had done out and in with her arms before, but had never done it with her legs. She figured it out FAST.

She is banging her toys together on her tray in the highchair. She also grabbed her crinkle paper in one hand and a toy in the other last week sitting with a tray in front of her.

It amazes me how well she listens (when she wants to) and understands and makes her body respond so quickly now.

Mother's Day

2009-05-10T19:29:00.000-05:00

For Mother's Day we went to the Deanna Rose Farmstead. It was lots of fun.

Raking, Sitting, Complaining

2009-05-02T13:24:00.000-05:00

It seems that we have a "two" year old on our hands. (several months early)

Or maybe a teenager? (several years early)

Kelsey really has an opinion these days and sometimes it is all I can do to hope that what she wants to do coincides with what Mommy needs her to do.

At therapy on Thursday, Kelsey did side sitting on her own for the first time. She did it for the count of approx. 10 facing one way.

She did it, complaining the whole time.

We thought it would be good to do the other side too.

Kelsey did not.

She did that side for maybe the count of 5???

Then we did some sitting and standing. And all the grownups involved worked their tails off to keep Kelsey happy enough to cooperate some.

When Kristin, her OT, came and we all tried to get her to do the "out" "in/boom" while bench sitting that she had been doing in the corner chair for several weeks, Kelsey would have nothing of it.

I said "out" and she didn't try to move at all.

I then said "out when you are ready."

Guess what Kelsey did?

She moved her toys.

I asked her again.

She didn't try.

I said, "Out when you feel like it."

Guess what Kelsey did?

You got it.

After Debbie and Melissa left, Kelsey sat in her corner chair again with Kristin and I.

She did something new!

Kristin had some rice and pinto beans that she put on her tray and Kelsey raked them and picked up a pinto bean with her left hand!

And as always she enjoyed herself making a mess (of rice and beans in her seat, clothes and floor) for Kristin and I to clean up.

So she did two new things, side sitting independently and raking/picking up with her hand!

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Love It When She Proves Me Wrong

2009-04-29T23:09:00.000-05:00

We were visiting today with the speech and vision teachers at home. I made the comment that she hasn't made the "ba" (B) sound.

Then Miss Kim was leaving and we were saying bye bye. She was laying on the bed and Kim was sitting next to her. All of a sudden she made the "ba" sound two different times!

Sucker for an Audience

2009-04-26T21:22:00.000-05:00

Kelsey does her best work with a bunch of people around. She loves to entertain and get the praise from as many people as she can get.

Just ask her therapists at IDC.

Last night we had some friends stop by.

Watch Kelsey show off. (and this video was several minutes into it.)

Watch me Go!

2009-04-24T23:31:00.000-05:00

Farmer Girl

2009-04-19T18:32:00.000-05:00

Kelsey's First Pigtails!

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Party Girl

2009-04-18T16:59:00.000-05:00

On our way to Mommy's April 15th party!

She had so much fun with all the people and excitement at the party. There was plenty of noise and talking and attention for her!

She even decided she wanted to work a little on crawling while there with all the excitement. She really got her legs going!

Sleepy Party Girl!

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What a Difference a Year Makes

2009-04-15T23:38:00.000-05:00

Easter Bunny

2009-04-15T23:30:00.000-05:00

Who needs the mall when we have one at home???

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Easter Beauty

2009-04-15T23:18:00.001-05:00

Barbie Dahl

2009-04-15T15:09:00.000-05:00

Unbelievable Courage

2009-04-11T16:17:00.001-05:00

Walk, Sit, Stand, Clang

2009-04-09T17:31:00.000-05:00

Kelsey had a great day at therapy at school today.

First, she tried the treadmill for the first time today. It has a harness suspended over the treadmill so she can't fall and then the treadmill slowly moves.

It looks kind of like this:

She cried pretty much the whole time, which I guess is something that usually happens the first time that a child gets on the treadmill.

Also I think she kind of felt like "Hey guys is anyone holding on to me here????" since she is in a harness that keeps her upright instead of someone holding her in that position.

But the therapists could feel her legs going through the walking motions herself while they were assisting her with them. I am excited for her to try it again.

Really I think she was just being her usual smart self, she knew that treadmill = exercise and that she should cry. ;)

Then we worked on bench sitting to standing to standing holding onto something. She is getting stronger all the time with this and knows when you tell her "up" to stand up.

We then did some kneeling on the stairs.

So by the time she got to sitting in the corner chair with the OT, she had really gotten a work out.

In fact, I supported her trunk a little in the corner chair which I never have to do anymore. (She was that tired!)

But then came the most exciting thing of the day...

She watched Kristen clang two stars off the star stacker together and then she did it herself.

She slid the stars together and we would say "boom" and then we would say out and she would slide her hands out (in opposite directions mind you!) and then "boom" back together. Over and over.

I had never seen her clang two toys together before and am overjoyed at how far she has come with the function use of her hands, particularly in an upright position!

The Mother at the Swings by Vicki Forman

2009-04-06T18:37:00.000-05:00

The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.
~
It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

Here is a link to more of her writing:

http://www.literarymama.com/columns/specialneedsmama/archives.html

Special Ballerina

2009-04-05T16:51:00.000-05:00

Here is a news story about a special ballerina.

http://abcnews.go.com/video/playerIndex?id=6447417

Kelsey may just be one too someday.

Disney on Ice

2009-04-05T00:32:00.000-05:00

We went to see Disney on Ice. Kelsey loved it.

She enjoyed all of the singing and lights. She really seemed to be watching the action.

"Go!" "Stop!"

2009-04-02T21:52:00.000-05:00

This is Kelsey's favorite button to play with at therapy. (With another cute kid from the internet demonstrating.)

She is very good at following the verbal commands "GO" and "STOP."

When I make the request for her to "stop", she finds a way to make her body do it and get her hands off or her weight shifted enough to make it stop.

Her motor planning time with this button has gotten so much faster.

She really has come so far using her arms and hands in the last 6 months.

Today, for the first time, we had Kelsey bench sitting with support and pushing this button with her feet.

My smart smart girl figured out how to play the "go" "stop" game with both feet on and lifting off of the button.

And quickly too.

When her motivation is high, she really shows how smart she is.

And yes, she gets that from me.

A Little Bit of Winter, A Little Bit of Spring

2009-03-29T22:38:00.000-05:00

All Done

2009-03-18T11:13:00.000-05:00

Kelsey has said "aw un" before. But often we have to wait a long time in between hearing it.

Last night I asked her if she wanted more bottle or was done and she told me she was "dun" (I think I heard a "d" in the un)

Just thought I'd share.

2009-03-17T02:35:00.000-05:00

New update today 3/14, on some info we have missed posting:

We went to see Kaitlyn's grave today. 3/14/09 There was a little pink thing in the ground, just around the graves. It was actually 2 pcs, I picked up. It was a Barbie plastic ring that had the top, photo part off the band part. I put it together, and looked around to see if it went anywhere nearby. Most sites were decorated, and couldn't see anything particular of where it should go, Most were boys sites. So I set it on Kaitlyn's stone, with Kelsey looking, and I have never seen anything do what this did. I just laid it down, and it spun gently around, and around, and around, for nearly a minute! Kept thinking this is the last spin, and yet it just continued at the same speed, as if it was in a vacuum, or on a motor. I said look Kelsey, I think Kaitlyn is playing with the ring, and it kept on and on. I called Kelly to look at it. Finally it stopped. I picked it up and told Kelsey that we gave that to Kaitlyn. I put it back down, and it wouldn't do it again, after trying twice, but told Kelsey we would just leave it there for Kaitlyn to play with. A couple ironies I just thought of. I always told that my daughter would be name Barbie, so she would be BArbie Dahl. It was a Barbie ring. Second, Grammy's story of being called back into a store, somehow, by a force, to buy a little RING, as if Kaitlyn wanted her to have it. (something she would never do on her own. BELIEVE.

Kelsey and I worked together on the Creepster last night, 2/8/09, and she did good, from the rug in the lr to the kitchen.

Kelsey, several times today said roll over. mom said she was telling her last night rolly over, so she was seeming to have more syllables, so it was probably rollie she was saying. 2/1/09 11:10p
Kelsey, 1/26/09 7:33p thought she said good today when i said good girl and good morning a few times to her, then tonight it was obvious she said good girl. Then she said elo da, after being prompted to say hello dada. She was doing all this all day, being very quick, saying it back immediately, even if it was not distinguishable. She was then talking to her talking doll, having a conversation for quite some time, it was on the floor, and she was on the rug, and scooted over to be next to it, then fell asleep with it. turning 90 degrees one way, then back, then 45 more, and scooting a couple feet. today, 1/27/09 4:52p , I was talking to Kelly on the phone and told Kelsey to say hello mama, and she did. I figured out as i was on the phone earlier, she was saying hello. Then we had a conversation, although i don't know what all she was saying, but it was multi consananted, and about every vowel sound in it! So I told her to say good bye, bye bye to mama, and she said ahh bahh

The meaning of Kelsey, victorious ship, she is sailing through adversity

When I Should Be Sleeping (cont)

2009-03-15T14:37:00.000-05:00

When I Should Be Sleeping

2009-03-15T12:18:00.001-05:00

Stepping Out

2009-03-15T11:49:00.000-05:00

Singing with Mama

2009-03-05T11:04:00.000-06:00

Here we are singing one of the songs we have sung together since before she was born.

Irish Jig

2009-02-28T23:58:00.000-06:00

Peek-A-Boo

2009-02-28T22:41:00.000-06:00

Ready to Play in the Snow

2009-02-28T22:38:00.000-06:00

Today I went sledding for the first time. I was smiling as Mommy, Daddy, and I went down the hill. But boy was it cold!