A Busy Beautiful Week

I feel like I have been on the phone all week! Struggling to get the funding in place for medical equipment, changing neurologists, fussing with billing over changes, ordering diapers from medical suppliers, collecting records, rescheduling therapy, oh wow I think I just nearly had a meltdown thinking about it all over again!  What's funny is I am usually handling all the phone traffic while driving to and from therapy. I tell you, if all I had to do is go to the appointments and not deal with anything else it would be a breeze!--well maybe lol

Last week was pretty exciting.... I had an appointment with our durable medical equipment supplier and picked out 4 new items!! It was like making a Christmas list!!  I have to give a shout out to Rick at Mobility Design because he patiently went through all the options for 2 hours with me.  He is always great to work with!  So to answer the question you're wondering-- we will hopefully be getting within the next few months a new stander, special carseat (in desperate need of), activity/feeding chair, and lightweight wheelchair--  with a whopping total of $9,500.  I will post links to the items we will get.

Kaylee is as cute as ever.  She stayed with Manga and Pop some this week.  Pop made a sandbox which is Kaylee's favorite activity and they planted a new garden for spring (pics will follow).  At physical therapy Mrs. Susan worked on strengthening her legs.  Kaylee is suddenly much tighter than she's been in a while.  Looks like we will have to start wearing leg immobilizers with long sitting and possibly even wear them at night :(  I continue to put off doing Botox injections (they relax muscles but the process is painful, fairly new, and wears off quickly) so I hope that we are able to keep her stretched out naturally.  The pollen has been so bad that Kaylee didn't have hippotherapy this week at all.  Hippotherapy is riding a horse to strengthen trunk and neck muscles and to give hips the motion of walking.  I have so many pics of her doing these different activities and therapy--I really need to load lots.

With Nonnie and Poppy out of town on business right now, Uncle Clay is staying at our house this weekend and Kaylee is ecstatic!! She and Josh have been practicing a song- "Jesus, Lover of my Soul".  Kaylee sings a few parts of the song by herself.  We hope to let her and Daddy perform it at church soon. I mentioned being on stage and she went crazy!!! She is such a performer. lol

                                                               PICTURE TIME



                                                           Kaylee being her sweet self

                                   

                                     Kaylee riding Snowflake at Kids in Motion hippotherapy.

Taking a break to feed the chickens.  The yellow suit is worn to produce resistance and allow for more of a workout.

                               While riding Sharon (OT) stops to implement some occupational therapy.

                                                             Kaylee in her gait trainer.

Arm exercises in "monkey cage" using sandbags to hold down extremities not being used and straps attached to a pulley system with a weight allows Kaylee to build strength in her arms.

                                                                 Therapy can be fun!!

                      Here are some photos of the garden Kaylee planted with Pop and Manga

This is the stander we will get.  It helps Kaylee strengthen through weight bearing and stretches her legs.  Hers will be blue.
http://www.rifton.com/products/standing/pronestanders/E940.html


This is the carseat.  Kaylee falls to the side in a regular seat so we are so excited to get this! Hers will be brown though.
http://www.columbiamedical.com/special-needs-disabilities-products-group.asp?ProductGroupID=36


This is the activity chair/ feeding seat/ hi-low chair we will use in the house. Hers will be cream colored.
http://www.rifton.com/products/sitting/activitychair/R850.html


This is the light weight stroller/wheelchair.  It is basically like a cross between an umbrella stroller and a wheelchair.  Kaylee's wheelchair is nearly 80 pounds so on quick trips we would be able to use this chair.  Hers is purple.
http://www.convaid.com/documents/Lite%20Rider.pdf

Walking

Kaylee walking 100 steps (200 if you count per leg).

Since this video she has walked 400 steps!!

this is only part one

This is part two--forgive my camera skills please.

I get distracted 

Pictures of Kaylee in March 2012

 This is Kaylee showing off her bed on the floor as I mentioned.

Of course she had to have a picture actually IN the bed.

Kaylee being silly--she has really improved in her mobility.  

That is good control shown here.

She just learned to sit like this--it is a transitional position that PT has

worked on for a couple years!! I found her sitting like this.

 And I can't believe I didn't mention the biggest news of all---Kaylee lost her

FIRST TOOTH!! The Tooth Fairy was good to her and I can't 

keep her from wiggling other teeth to loosen them.

Independence

Independent—not influenced or controlled by others in matters of opinion,conduct, etc.; thinking or acting for oneself

Kaylee has a unique situation regarding independence.  She is so entirely dependent on the help of others and yet she is constantly showing her independence.  We recently removed Kaylee’s bed and put her mattress directly on the floor.  Kaylee has never been able to get out of bed in the morning or, like most all typical kids, get up numerous times at night after being put to bed.  Well, now she sure can!!  It is one of her favorite things, actually.  She even “practices” during the day….I put her to bed then leave and wait for her arrival in the living room.  I can hear the giggling all the way.  

Last night after putting Kaylee to bed, I too went to bed.  I heard some noise on the monitor but since Josh was still up I assumed he was checking on her.--Wrong--LOL!      Maybe an hour after bedtime I heard more noise and I finally decided to go check on Kaylee myself.  Well, I did not find her in her bedroom at all, but in her playroom.  (Josh was in the room with her playing guitar though) She was using markers to color, and the coloring book wasn’t the only place she had colored--her hands and face matched the picture.  It was so cute I just laughed and joined her.  I decided to let her stay up late and we even made cookies.  

Maybe all you seasoned Moms think it is completely out of the question to have responded the way I did...  Afterall, she disobeyed by getting out of bed, opened markers that she should only use with help, and therefore she should have been taken back to bed and scolded.  But I saw in that grin as I surprised her, accomplishment.  She had worked for 5 1/2 years to achieve this.  Sometimes as parents I think we need to look at a child’s behavior simply for what it is…..childlike.  They like to explore and impress and at times that means doing something that we teach them not to do.  Yes teaching them is our responsibility, but some of the most enjoyable times together are when we just say "YES" when our natural response is no. 

Round One....

So today is the day....Round one so to speak.....Today I am finally starting a blog.  Now, I can't promise that anything I have to say will be useful, interesting, or engaging, and maybe I will only be followed by family members that occasionally remember to check in, but I realized that my memory fails me too often these days.  The only way I might remember this time in my life may very well be by putting it down on paper.....well on text on a laptop that will be available for all of the world to see....not quite a diary but I hear this is how we are supposed to journal in the year 2012----BLOG!

I suppose I should describe what you can expect to find on my blog.  One word will pretty much sum things up-- KAYLEE-- She is my world and everything in my life revolves around her.  Kaylee is my 5 year old daughter (whoa I think having a 5 year old makes me old) with Cerebral Palsy.  Truth is, I hate describing her that way--like I have to include that nasty 2 word phrase to alert the world that she is not just Kaylee, my 5 year old, but she is Kaylee who you is different from most everyone else.

 I can't decide whether to classify myself as a stay at home Mom- since I do in fact "stay at home and be Mom" during the week- or as a Radiographer--because I work a full time job on the weekends also-who stays at home during the week..confusing?? LOL!  I am sure that I will eventually give details of my schedule, but  in the attempt to keep "round one" brief and to the point I will skip that looooooooong segment.

You can expect to see all kinds of photos and links to articles that deal with special needs, treatments, and such, videos, photos, pictures, and recordings--- yes I realize I repeated myself--I like to show off my little girl :) So please tune in regularly.  I am not sure if I will post daily, weekly, or whenever I feel like it.  Please feel free to ask questions along the way because in an effort to educate the general population about kids like mine, I have to be willing to let you into my world.....as scary as that may seem now.  Thanks for following me on this journey.  I hope I don't let you down  :)