HAPPY BIRTHDAY

Holy cow I cannot believe Kiya is three.  It has been an incredibly slow and fast three years.  Looking back I am so happy to be at this point.  Kiya has surpassed all of my expectations and does not allow her physical limitations to slow her down.  She has come so much farther than I ever allowed myself to hope.  She has been such an amazing part of our family and my life.  I have learned immeasurable things from her and she touches everyone she meets.
Kiya starts integrated preschool tomorrow.  I cannot believe it!  It is definitely going to be really hard for me.  The teacher is going to let me stay for the first few school days so I can teach them how to feed her safely and show them how she functions in her walker.  The first day I have to leave her for the full day I am going to have a melt down.  I have been in charge of every aspect of her care for the last three years.  Not only is she younger than the boys were when they went to school, but I have been super protective of her.  This is going to be like ripping a paper sized band-aid off of my heart.  Part of me is excited, however, because she is so sick of me.  We spend a good amount of the day in a heated battle of wills.  I hope she enjoys being with other kids and learning new things.  There are 16 kids some typically developing and some with other special needs.  Kiya is definitely the most involved and the only child with mobility issues.  I was kind of sad about this at first, but now I'm glad because she will get the help she needs.  She will receive OT, PT, Speech, Cognitive, and sensory help.  It is nice to think that not all of that will fall on me for a change.  Kiya is going to go to school four days a week for three hours.  We got so lucky because she is going to go to the same school as Lex and Mason.  They have only had the program for two years so I feel like it is a huge blessing.  I had the most foreign thought after I found out she was going to school.  "What do I want to do for three hours."  I haven't thought about doing something for myself for three years.  We shall see how much I can cram into three hours.
I cannot wait to see what this next year holds.  We want to send Kiya to Now I Can therapy again in January.  She made so much progress with that.  Now that she is out of early intervention I have to replace all my therapy with outpatient therapy.  I am so thankful to early intervention for what they have done for us since Kiya was born.  We are really going to miss her therapists!
Here is what I can do at three:
1.  I can use my walker!  My next goal is to be able to turn the walker all by myself
2.  I can sit on a bench
3.  I can slide down the stairs
4.  I can hold small objects and feed myself with a spoon
5.  I can sing and imitate anything mommy says even knotty words
6.  I can boss my whole family around
We love you Kiya and are forever grateful that you fought to be a part of us forever.

Kiya's Therapy

Kiya
Here is Kiyas amazing video from her three week Now I Can therapy session.  I still cannot believe how much progress she made and her tenacious spirit!

Great To Be 8!

Our sweet Lex was baptized

on Saturday and it was such a great experience.  I am so dang proud of this boy for who he is.  Lex is one of the most Christlike people I have ever met and is one of my very best friends.  I still cannot believe he is this old and that it went by so fast.  I can remember how excited we were the day we had him and now he will be as big as me soon!

Healing The World One Step At A Time

Today we took the kids to Lowes for supplies and so Kiya could use her walker in the store.  She loves to walk in the store because it is a smooth surface and relief from the intense heat we have been having.  Lex and Mason are the worlds sweetest brothers and let her try to "squish them" with her walker.  They don't complain about having to walk slow and it doesn't occur to them that we are "different."  Kiya also likes all the people in the stores.  She will not be ignored and says "hi" to everyone she sees.  People really seem to gravitate to her.  Even if they don't say anything I know she made an impression.
As we were leaving the store today I noticed a man staring at Kiya.  I have learned that people generally mean well so I told Kiya to say hi.  The man came over and started asking me about Kiya.  As I told him a little about her tears swelled up in his eyes.  He was so touched by my angel and how amazing she is.  He proceeded to hug and kiss her and it was obvious that he was very moved by this little girl with a lifetime of experience.  I was so grateful for this experience.  Today was a glimpse into the effect Kiya will have on other people and the world.  She can melt barriers with a smile.  She can heal hatred, envy and self pity with her attitude.  I have met so many strangers that I wouldn't take the time to talk to her if it weren't for Kiya and they instantly connect with our family.  I am so grateful for this amazing spirit who teaches me eternal lessons everyday.  For all the heartache and worry that comes with this situation it was so nice to have such an amazing moment to cherish.  I am so grateful that this sweet man took the time to talk to us and step out of his comfort zone.  His kindness allowed me to see a future filled with amazing moments and without fear.

When Time Crawls

It is really hard to get pictures of Kiya during therapy because I am not allowed to see her so I take them through the glass.  Honestly she is crying most of the time so I don't really want to capture it.  The therapists at Now I Can are taking pictures and video for their records and I will get a copy upon completion.  I am hoping to see huge progress by the end.  I cannot remember the last time a week took so long to be over.  Each day seems to drag on while I listen to sweet Kiya crying in another room.  Four hours is seriously a long time for anyone to workout.  Not to mention someone who has to work twice as hard to do the same task.  It has honestly been agonizing.  She gets a "break" at 10:00 which really just means 30 minutes in a stander.  I get to come in during that time and she begs me to hold her.  Of coarse I cant and when I leave her after the break she really starts crying because she knows she still has another 2 hours of intense therapy.  I keep asking Matt if we are doing the right thing because everything about it feels unnatural   Then again almost everything I have done since Kiya was born has been unnatural   Saying good by for three months in a hospital, not being allowed to hold her, surgeries, feeding through a tube, replacing a feeding tube, Botox injections, medical devices, therapies, etc.  I will say that her tone and range of motion is certainly better since she started the therapy.  She can also alternate her legs in mid air, and today she used her walker for longer than ever before.  She is also sitting with less pain and curvature in her back.  Matt is taking a turn tomorrow so that I can stare into space and worry about her from home.  Today I took poor Mason with me and he wanted to keep checking on Kiya and was mad that they were "hurting" her.  Most brothers can barely stomach their sisters, but Kiya has two built in bodyguards for brothers.  I am glad that programs such as this are available and that we are able to give Kiya the best.  I just wish something in this life could come "easy."

Now I Can

We started the Now I Can program today and it is already proving to be the challenge that other moms warned me of.  Today was the assessment so the session was only two hours as apposed to four.  Kiya has developed an understandable fear for new faces.  She can sniff a therapist from a mile away and she was onto this group from the start.  She also really hates being touched by people she doesn't know or feels threatened by.  I dont think she was really hurt today so much as overwhelmed and afraid.  She screamed the entire 2 hours and has several bouts of emisis.  By the end she seemed to warm up a bit to the therapists so I hope a growing relationship with them will increase her trust and help her through the program.  Today they wanted me to be in the room for the evaluation.  Kiya cried my name for me to save her.  This has happened so many times including when I have to hold her down for Botox injections.  I have done so many unnatural things as her mother and my internalization of them can be overwhelming.  With every new therapy and procedure I try to make sense and find peace.  I am definitely not there yet.  Right now I feel numb and detached.  These therapists are obviously very skilled and identified some things right off that I hadn't really understood.  Her clonus in her feet is not only a sign of neurological damage, but also a response to the curling in her toes which she does as a  "survival" reflex.  Apparently there are reflexes that you have in infancy and then as you grow into adulthood. Because Kiya was not able to develop the mature reflexes they layered upon the primitive reflexes and this contributes to her tone and spastitcity.  Even after having Botox injections a week ago the therapists were surprised how tight her legs were.  Things that should be so simple have become so complex.  Although I know this is going to be an extremely challenging three weeks for Kiya I am excited for the results and to be working with an organization that specializes in  improving mobility.  I will post more on what they do as time progresses.  A lot of repetition is used to create the functional skills that she currently doesn't have.  Tomorrow I wont be allowed in the room.  As much  as I want to let Kiya know that I am there for her, I dont want her wondering why I am not saving her.  We are praying that she will be able to tolerate the therapy and that she will gain new skills.