Moving Moving

Kelsey moved the kidwalk all by herself! Outside!

(She had moved it some on tile floors and with her roller skates on, but she is getting stronger!)




If your name is Grammy or Grandma, you can go "here" to see the other two clips.

Kelsey Roller Skates in her Kidwalk

Last week Kelsey was put in roller skates at school during her class time.

It made me so happy to think that they let her experience something like that.

Bryan and I were talking about it on Wednesday night and I was thinking it over in my head.

So many times you can feel Kelsey trying to activate muscles when she is trying to walk, but she isn't getting any results for her efforts. We wondered if the skates would help give her that movement feedback.

So Bryan got some at Walmart. We put her (hated) AFOS on and then we put on the skates.

This video is what she did.



She got the balloons the first time quickly (the first couple of minutes in the video) and then it was the second time that it took her longer. But she bent her knees some (IN THE AFOS!)

So cool that she moved the kidwalk all by herself (which she hasn't been able to do) and that she went for a target and got it! She found the balloons there herself. We hadn't pointed them out to her.

Adaptive Easter Egg Coloring

Last night we met Fletcher and his family for supper and then for Easter Egg coloring.


We had so much fun!

My goal is to have Kelsey experience as many age appropriate things as she can. I try to find ways to work around the physical limitations so she can still have the cognitive stimulation and experiences that typical kids her age are having.

We started with the traditional Easter egg dye and then some awesome kits that Fletcher's mom, Erin, found at Target.


We also used Ziploc plastic bags and a plastic storage container to put the dye in. We were able to seal the bags with the egg and the dye in them and have the kids squish the egg back and forth to color it. We tried the same thing with the storage container (rolling it back and forth), but for us the bags worked better.

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!
  
• 
  
• 
• 
  

Yes, No, Maybe So

Look at my girl go!

She has been doing yes/no cards on a black binder for about a week now. She is really really accurate.

Yesterday her home OT brought out this voice output device. When she was in her corner chair she couldn't quite get her arms to move enough to activate both "yes" and "no" as accurately.

Last night I sat her on my lap, so she had the ability to lean back and then forward. We asked her all kinds of things.

Later I recorded this.

Communication

It is amazing how much Kelsey has been communicating.

Ever since we learned that she could choice make using "left" and "right" reaching, it has really opened things up. She also is way more vocal lately. It could be that her head congestion is finally better or maybe that she sees we really are listening.

We have a cute video that I will have to try to convert of her telling us "ya" to things she likes and "ooH" (no) to if she likes bedtime. In that video, I ask her if she likes dad and instead of her usual "ya" she says "offfv ad" (love dad) It is really sweet.

Yesterday with Kristen, she was ready to be finished with a peg board, but Kristen and I were asking her to do one more thing. She sat there and didn't try. Then she signed "all done" with BOTH hands going high and up. (usually just the right hand does the "all done" sign) and then she verbally said "un" (done)

She is laughing more and more spontaneously and it is absolutely precious.

Can't wait to hear "offv ahma" all the time. :)

Daddy's Unedited Notes for your Reading Pleasure

Daddy’s Raw, Unedited, reports on Kelsey… for your reading pleasure, since it’s 3 months of misc. items:

.
Kelseycan. She walked from the office to our bedroom with Kelly holding her under her arms, right leg, left leg. I massaged her right leg and behind her knee, and it would coax her on, relieving the excess tone. She had been laying on the floor, on my stacks of sorted papers, but she was having fun with them, so I couldn't see moving her. She was just moving all over, messing them up, wrinkling, etc, lol. She played with her Penguin, and would punch it move it, talk to it, and laugh loudly when she made it talk. First time I have seen her play by herself that way and be happy, totally entertaining herself, and enjoying it all. She would look at me for encouragement, and same, had done that at school yesterday, paying as much attention as if to say, Daddy, are you seeing me? Tonight also, after prompting her just twice, she said Boo, very distinctly, with the Ba sound! We both screamed Yeaaah, Kelsey, woo hoo, which led to a 3 minute pout and near tears. She just is not sure about over excitement, and we think she thinks we are yelling at her, and doesn't seem to matter how much calming her, that even seems to make the lip stick out further. 11/12/09 10:59p

Kelsey watched me play a video game, the historic games of pacman, galaxia, and a couple others. She was just watching, and talking, and when i got done, or the ghosts were chasing, and about to get me, she would say, OHHHH, OR GO! Laughed at music between levels, or the sounds / movements of me turning around and eating the ghosts. In Galaxia, she would talk when the bugs would come down to chase me. She is very smart, sees well, and shows anticipation, and reaction. 11/5/09 2:02a

Kelsey ate a 4 oz food jar in 12 minutes! yay Kelsey. She has just ate and ate today!10/29/09 12:00a

Kelsey 10/19/09, was hungry, just waited to feed her when she asked rather than wasting time trying to force it to her. She had been good all day hanging out, and i had a bottle sitting by her, and she laying on the floor, kept looking over her head at it and kept moving that way, got to the point she was at it and was sucking on the outside of the bottle, knowing that was her food and she was hungry. So neat to see acknowledgement and desire, and doing what she could , problem solving as best she could, on her own, to fill the need.

Kelly was kissing on Kelsey, and she spontaneously said ama, i uv ooo. 10/15/09 7:34p

Kelsey tried out the completed crawler i made, and loved it, moved all around the entryway. The night before, we were in the hottub at the hotel chuck stayed at, and for about a1.5 hours, she just kicked, and talked and walked, and moved her arms and legs. I was feeding her a bottle after her crawler time, and after asking her all done or more bottle, she said done bottle. 9/30/09

Kelly, Kelsey, and I went to the park with the fishing lake in Olathe. We found a dock that was vacant, and after introducing Kelsey to the lake view, having her be pretty mellow, I finally laid back on the deck and let Kelsey lay on me. Holding her, I relaxed completely, got into a trance zone, and prayed about Kelsey, "I am grateful for her making all her nerve connections, growing, learning, and achieving new things daily. I am grateful for her quickly learning how to walk, talk, crawl, do all her motor skills and having all her muscles be fully functional, and being able to feed herself." Some kids came to fish, and took a bit away from the trance/zone I was in, so I sat up and held Kelsey on the dock. She was sitting with her knees bent, laying against me, with her arms pulled up high on her chest. I considered the possibility of the kids casting poorly as I used to, so after a few minutes, decided it best to leave. We had her touch her face, she was licking at her hand. I moved her hand around and told her to wipe wipe wipe the mouth off. Kelly looked at Kelsey sitting there and said, "you know, with her arms up like that and her hands now working better, she could feed herself a cookie". Hmmmmmmmm. So we got home, and finding a way to keep her elbows up, she was holding a cookie close, and she just kept pecking at it, moving her arms a little, and moving her head toward it, to bite it. 9/7/09 5:02p

kelseycan Concerts Kelsey Attended, brooks and Dunn, Gary Allen aug 09, Mark Wills-Santacaligon 9-5-09 8/23/09 2:13p , Lonestar 7-08, Eddie money 8-09, Jo Dee Messina 8-09, 6-09 country in the woods Corporate Woods, Emerson Drive

George strait has a song, I Saw God Today" Every day looking at Kelsey, I see God's Miracles. I have never been religious. I believed, and I know right from wrong, and mostly, follow the right path, and endeavor to do so. It can cost you in the short run, but in the long run, all you have is your word. You may make mistakes, and you need to forgive yourself for those you have made, and move on. Some struggle with, including me, with times such as having Kelsey, actually, first it was the loss of her twin sister, we named Kaitlyn. Not having kids, not really caring if I did or not, as it had been difficult for my wife to conceive. I was fine with whatever happened. And then, we found in the clinic that day, that it had. And I knew the moment I looked at the screen. (actually, I thought it was triplets, but the third item was the placenta) Can you say shaky knees? All the emotions; wow, how, now, and holy cow! what a miracle! And then, it was cut short, just about 15 weeks later. And so one. I was sad, disbelieving, and really, just numb. Really, seeming, no emotion, just empty. The most amazing miracle, just got cut short. Was it something we did. We did everything for those babies. All the foods, reading, talking to them, I was at every doctor's appointment but one. The one right before the one where we found out the bad news, that we had lost one. From the time we heard the news, and they said CP. I had the worst feeling, with stereotypes in my head of what that meant. sitting in the car at the parking garage of the children's hospital. I thought, not my child. How? Why? This little angel that slept on my chest at the delivery hospital her first night, seemed so normal, so perfect. This smart little girl who we played with in utero, counting, calling her baby bonk bonk because she would kick and count, One time I poked at her 80 times, and each time, she would kick or poke back, and we counted. However, that was pretty much the only time, in that garage, that I really feared, because at that time, I began faith path, that my little girl would be fine. Thankfully, for two friends, one with an autistic child, and one that works with developmentally challenged children. I think just holding her that first night, making a connection, told me she would help me, and I would help her. All the subsequent doctor's meetings just seemed like a waste of time. Oh sure, she has had challenges, we have had fears, as many parents do, yet we get through them all, and always will, because we, and she, are blessed, and watched over. It is not our choice, we were chosen. Many times, Kelly says why us, after all that we have done right, and you see so many people, drug abusers, etc, that you would think would have children with problems, yet they seem just fine. Then we decide we were chosen for a reason, for a higher reason. We are strong enough to deal with this, and this little girl needs us as much as we need her. Those other people we see would never be able to handle the diagnoses, the time out of a job, etc. It is very difficult for us, and financially, we have struggled recently unlike anytime. Our decisions sometimes seem flawed, yet are very correct, in that this is most important. This is my new passion, because I feel this message is to go out, and I am strong enough and talented enough to get it out. This little girl is a miracle, and I am a witness to God's miracles daily, and that is something I don't know how long it would have taken me to understand outside of this situation. We are to spread the word, and help those less fortunate in belief, knowledge, etc. I have many inventions, business ideas, and passions on my plate. But I feel as of today 8/31/09 4:44a , that this is my purpose, that God wants me to fulfill. I am grateful for anyone's help with this adventure, and we get alot, from some of the most amazing places. God is providing, through sources that really kill those prejudices, or sacred cows from my past. I am a true believer now. Believe and see in the good in any and all people. I am not trying to in any way be preachy to you. I know how some may feel, I felt the same way. I just endeavor to assist you to find the miracles in your life, that may be right in front of your face. I am just a witness for daily blessings entering my life. A catalyst for my talents and abilities. A path for my random creative thoughts. To show people what is possible. Being another source of helpful and hopeful information. Helping you see the answer is within you. In your heart, in your mind, in your connection to your surroundings, the universe, God. You just need a path to find it. 8/31/09

Tuesday Night we ate at Jose Pepper's, and Kelsey sat up well, by herself, looked as if she was falling forward, then caught herself, set herself back, and smiled. Doing it several more times, she would laugh. "That is my new trick...Balance!" Many bites of refried beans, some rice, although didn't quite know what to do with that. Most of everything stayed in. Really seems to like the cornbread! Eating like a big girl. Mommy says "Soon, we will have to buy her own kids meals." [1/2 hour to write these posts! not complaining, just...wow. 1/2 hour to review all that Kelsey did this weekend. all the smiles, all the joy, and accomplishment, pride, excitement. relief. all reviewed, in 30 minutes, really, writing all about the fair would take an hour.] IT is so nice, and refreshing, to see her. I have always been a quiet champion of Kelsey, and knew she would be able to do whatever she wanted. I have always believed. It is so nice to just see what seems like all these switches coming on. She will be walking, crawling, etc, just soon after 2 years. Just seems like such a little person now. Just so connected to her now. It could be difficult for someone to do anything other than work with her, while seeing these great results! I think that is the best thing for her. IT is a blessing that we don't have someone to watch her, and just include her in everying. Looking back, I told her the other day, asked if she knew how lucky she is. I asked her if she knew any kids her age who had gone to Disney, on a cruise, to a different county, to concerts....heck, I think I just figured out she has been to more concerts than I did prior to 21! Likely more in 23 months that I did in 23 years! I think she just gets to see and do so much, it is helping her grow and see all she could be doing, where most kids in a similar situation would see minimal, and "normal" kids would just be home with a sitter often. I think this is paying off for all of us. I think we have more fun including her and showing her things than just doing it. Sure, away time can be nice, but I get alot out of having my little buddy just constantly looking around, and looking up at me and smiling, talking, having a great time. I am blessed. 8/26/09 7:45a

~Daddy

For AJ

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)

(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

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.

Kelsey needs a Kidwalk

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!)

The Cow Says Moo

Cookie

Daddy and the Lake

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

.

Just A Swing'n

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!

Friday night movie

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

.

Two Step

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

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)

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

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!

"Go!" "Stop!"

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.