Whoo Hoo 2!

HAPPY BIRTHDAY!

Here is a video of some Kiya's first "steps" in her Kidwalk.  She hates every minute of it, but she is doing so awesome!  I cannot believe she is going to be two years old on Tuesday.  I am so grateful that she is crawling and has her own form of mobility.  This birthday is going to be such a celebration because of it.  I cannot believe it has been two years since we began this journey and I feel a sense of accomplishment to have made it this far.  Things feel so much more "normal" now and our family feels so much more stable.  Mason is back to his old, wonderful, crazy, vivacious self.  Lex is delving deeper into science and his new found passion for minerals and precious stones.  Kiya is progressing at her wonderful pace and is right on track with the terrible two's.  That's right I said it- Kiya has been a bit of a pickle lately.  She likes to see how fast I can run when she forces herself to vomit because I set her down.  She points and screams to let me know what she wants.  She hits me and says no if I dont seem to be getting it.  She has also taken up her own version of fighting with Mason which he seems to enjoy and accelerate.  Overall she is still my amazing, inspiring, positive little girl that melts anyone she meets.

At two here is what kiya can do

1.  Crawl like a bunny (scoots both legs at once behind her)

2.  Bonk her head- sounds funny, but I am excited to see her doing normal kid stuff because she is able to crawl around the house

3.  Drink water pretty well from a sippy and a cup- still not eating orally much

4.  Mimic so many words- even swear words that I am sure she did not hear from me

5.  Hit her brothers and scream when they take a toy

6.  Say Love You, hold you, Manon (Mason), Lek (Lex), blow kisses and so many other things

7.  Give the best hugs and kisses on the face of the earth

Of coarse this is just a small list of things that I want to remember, but we feel so blessed to have Kiya in our home teaching us everyday.  The road is untraveled for us but I am so excited to take the journey with Kiya. We love U!

This is the closest I am ever going to get to having a pedicure.  Thank you Mason!

 Here is a classic case of babies holding babies.  Kiya has some awesome brothers!

 Mason has devised a way to play with Kiya without actually having to interact with her.  Sisters are fun at high speed.

 Once again Mason has taken advantage of a dirty situation

 Run grandpa run!

CRAWLING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The last week has been amazing.  Kiya has been getting in and out of the crawling position with ease.  Sunday night she started scooting one leg and today she crawled!  I am overjoyed and extremely grateful.  The prospect of having to put up a baby gate it so exciting!  Now she can finally get to a toy if she wants one without having to wait for me.  Here is a video of her getting around on her own.  This is going to change our lives and give Kiya so much freedom!!!

YIPPIE!!!!!!!!!!!!

Yesterday Matt and took our familiar journey to Primary Childrens hospital to meet with Kiya Cranialfacial doctor and discuss the surgery.  As we were checking in Kiyas neurosurgeon walked by and we asked him if he could join the discussion.  I had previously attempted to set up a care conference between the two doctors without success.  We were able to meet with both doctors and they concluded that Kiya will not need to have the distraction surgery right now.  Of coarse we will watch her and report any regression or behavioral changes, but no surgery for now!  Matt and I are so excited!  I cannot remember the last time I felt any sense of relief and this much excitement.  I am so grateful to have one less operation and to be able to focus on being a family and progressing.  I am also so grateful for the promptings I felt to postpone the surgery.  So glad to not have to make these big decisions alone.  The surgery would have been performed it without question if we had not been apprehensive.  Once again Kiya defies the odds and amazes us all.

I feel like I just won the lottery!

My biggest heroes are small in stature

We spent the day yesterday at Primary Childrens hospital having Kiya's shunt checked for malfunction.  She had to have yet another CT scan which made her so mad she threw up on the table during the scan.  Luckily everything looks great and her shunt is okay.  She has had some difficult behavior for about the last month so we wanted to make sure there wasn't a bigger issue.  Basically I think she has a huge case of Princessitis (perhaps some neurological issues as well).  I will be taking her to the pediatrician to see if we can help her.  Kiya does not want to be set down and if I do she will make herself vomit to get picked up.  Needless to say this has led to an explosion of chaos in my life and home. Her therapists say it is a severe case and they will be sending in the big guns with a behavioral therapist.  Yay! another therapy visit.  I was starting to get so bored with the six a month that we already have.  Any who I hate that she inst moving because she is as smart as a whip and wants to be doing what her brothers are doing.  I am going to research some mobility devices that we haven't tried to see if there is something that could provide more freedom.
As for surgery I am still waiting to get into see the doctor to try and translate his opinion.

Here is my most photo

Shades of the NICU

Kiya's surgery for Monday has been postponed.  A week ago I sent her Craniofacial surgeon an email to clarify some questions I had.  He responded with a phone call that has caused confusion.  Originally the neurosurgeon and craniofacial surgeon instilled a sense of urgency in Matt and I that made us want to act quickly and have the cranial distraction procedure done.  When I spoke to her doctor a couple of days ago he said that we could wait 6 months and see what her head was doing (not at all what we discussed originally).  Kiyas neurosurgeon is out of town until Monday and we feel that he knows her best.  I am arranging a care conference between both doctors to figure out what really needs to be done.  This reminds me so much of our experience in the NICU where one doctor will tell you ten different things and I am left trying to sift through it all.  I spent the day yesterday at her pediatrician getting her head circumference measured, tracking growth and going through scans.  Her pediatrician was nice enough to call the surgeon and try to make sense of all this.  As for now I am going to postpone the surgery until I feel 100% confident that it is a must for Kiya to avoid future, more extensive procedures.

AHHHHHHHHHHH!