At almost 3 years old, Rebekah is finally ON the growth chart.  She has been well below the 5th percentile forever.  Now she weighs in at 25lbs 2oz and 34 1/4" tall, putting her in the 6th percentile for weight and height.  Whooo Hooooo!

Rebekah's physical therapist came and brought a pink wheelchair for Rebekah.  I had really mixed feelings about her having a wheelchair at not-quite-3-years-old.  Rebekah's PT pointed out some of the advantages of wheelchair use for Rebekah.  For instance, at Rebekah's age, constant carrying on my (or dad's) hip is not good for the development of her spine & hips.  She is already at greater risk for scoliosis and hip dysplasia, and she needs good support.  When she is in a stroller, people are more likely to view her as, and respond to her as, a baby.   A wheelchair (at her age) puts her up at a higher level (similar to what she is when standing) and makes it easier for her to see eye-to-eye with kids her own age, fostering social developement.  Not to mention that even when she does begin walking, she will not have the stamina of a typical chid, so she may need it for distance, etc.  I still wasn't thrilled about it, but was willing to give it a try.  When it got here, it was sized for a much larger child, so someone is coming out in January to adjust it to fit her.  In the meanwhile, our plan was to just sit her in it a little each day so that she could get used to it.  Within 2 days she was moving it!!!  I never would have believed that she could wheel herself.  I am sure it helps that we let Ryan and Rachel play in it and they had great fun, so she wanted to do it too.  Granted, she can't go more than a foot or so at a time, as the size is wrong, but just the fact that she knows how and is trying opens up a whole new world.  I am much more open to her having a wheelchair that gives her freedom to move on her own, rather than a wheelchair to be pushed in.  I am thrilled that she will have the opportunity to run away from me at the park, like typical kids.  There are so many things that our typical toddlers just learn in day-to-day play that can't be learned when they can't walk and really explore.  For instance, you can't learn what your boundaries are if you never have a chance to test those boundaries.  She has never had the opportunity to learn that you don't run in the library (or in the parking lot!)  She rarely gets told "no" because there is very little for her to get into.  She has been in my or dad's arms everywhere outside of the house 95% of the time since she was born.   I am thrilled that she will have the opportunity to explore her world a bit more on her own power.  I can't wait for the day that she "runs" away from me in the store!

I attended the Women of Faith Conference today and cried through much of it.  I had the pleasure of watching Lisa Smith, a young woman with Downs Syndrome, perform.  Lisa learned ASL (American Sign Language) and taught herself to sign to Sandi Patty cd's.  Sandi Patty saw her in the audience at one of her concerts and invited Lisa up on stage.  Since then, Lisa has signed at many Women of Faith conferences around the country. 

As I watched Lisa, God reminded me that Rebekah is not limited by her diagnosis.  GOD is not limited by Rebekah's diagnosis.  I was reminded that God loves Rebakah.  That He created her.  He formed her in my womb.  She was not some accident of conception.  God knows every intimate detail of how she was formed.  God will raise her up for His good purpose.  I just need to let go and let God do His work.  Or as Luci Swindoll said "Show up, shut up and let go!". 

I thought I had been dealing well with Rebekah's diagnosis.  I found today that I am not doing as well as I thought I was.  What I have really been doing is supressing all of my fears and putting on a brave face.  Don't get me wrong, I still know God is in charge, I still believe God chose her for us.  I am just willing to admit now that I have fears.  I have worries.  I have guilt.  I have all of these irrational things swirling around inside that I need to just let go and give to God.  I do not know Rebekah's future, just at I do not know the future of my other children.  Only God knows.  I do know now that she can have an amazing future if I do not limit her based on her diagnosis.  My role is simply to love her and follow God's leading for her.  Please pray that I can step back and give the control back to God.  He has already blessed her tremendously and I know he will continue.

It's been awhile since I posted an update on Rebekah.  She will be 18 months on Friday.  That is so hard to fathom.  Not only because time just flies by, but because she is so tiny and her motor skills are so delayed that it is hard to believe she is supposed to be a toddler.   She weighs just over 17lbs, is 30 inches "tall" and has 6 teeth.  She actually looks like she is filling out a bit.  Her legs and arms have a little "fluff" and she doesn't look so painfully thin like she did for so long. 

She has a bit of a virus today - low grade fever and vomiting - that just appeared out of nowhere.   I gave her a bath and she is having a good nap now so hopefully she will wake feeling better.

As for her progress, she is in a slow stage right now.  Her developement really does come in spurts.  She will learn two or three new things then nothing new for months.  Just before she starts something new she will temporarily lose the skills she has.  It is a pattern that she has followed several times over now.  As of now,   she sits well and can almost get herself into a sitting position.  When she sits, she uses her legs to spin herself around.  She also has a really long reach, thanks to her incredible flexibility.  She can fold herself in half and reach way out to get what she wants.  When she is on her tummy she rolls and pivots and pushes herself backward a little.  Still no forward motion and no hands and knees for crawling.  She will briefly stand with support but she is not bearing weight on her legs enough.  Part of the problem with both the hands/knees postion and standing is the double whammy of hypotonia and hyper-mobile joints (the extreme flexibility).  This just doesn't give her enoug stability to stay in those positions.  We did get her Hip Helpers (www.hiphelpers.com) and a pair of good walking shoes to support her ankles and they help some, but not enough.  We go see the pediatric orthopedist tomorrow to evaluate and see if she will need some type of orthotics.  I'm pretty certain that she will.  I will be glad to get help to get her standing.  The longer she goes without weight-bearing on her legs the harder it is for the hips to develope properly. 

Aside from physical developement, her cognitive and speech developement is a little delayed but not as much as physical.  At her last evaluation she was about 3-4 months behind on speech and 2-3  months on cognitive, with a few skills that were actually right on target.  She has a few words now - bye-bye (her first word, spoken at 16 months), uh-oh and mama.  She also signs eat, more, drink, mama and daddy.  She understands several more signs and seems to understand alot of what we say to her. 

Sleep has improved - she was waking every 2-3 hours throughout the night but now she has many nights where she sleeps for 5-7 hours before waking to nurse.  We have been praying for this time to come.  The sleep deprivation was really starting to get to me.

DD2 needs some "mama time" now.  I'll go enjoy her while the little one sleeps. 

I'm sure the little one will wake up any minute but I just had to share - 2 days shy of 16 months Rebekah said her first real, actual word!  She said "bye-bye!" and waved!  It was so cute!  I almost wasn't sure she had really said it, as it was really close to her usual babbling, but the wave along with it confirmed it.    I am so very proud of my baby girl.  She also has a few consistent signs now - Daddy, eat, and more (which pretty much means "I want").  She is not yet crawling but she does push herself backward across the floor some.  It makes her so frustrated!  Ryan (ds) and I both have a really hard time letting her be frustrated so she mostly moves when we are out of the room and don't rescue her.  It is so hard to watch her have to work so hard for the things that come so easily to others.  God has blessed her in so many ways.  I just need to trust that He created her to be who she is and there is a purpose.  I feel so honored to have her and I pray that God will make me worthy of this blessing.

Rebekah learned to drink from a straw this week!  This is a big deal for her because of her problems with oral motor control and low muscle tone in her face.  She picked right up on it with little encouragement.  The Occupational Therapist (OT) rigged up a bottle that we can squeeze to get the liquid started and then she would suck.  We only had to squeeze it the first two times then she quickly figured out how to get the liquid out.  For the first few days she only took two to three sips during each meal and half of it dribbled back out of her mouth.  Today she drank 3/4oz and didn't dribble any of it!  Go Rebekah!

She also signs "eat" while we are feeding her.  It is so fun to see her begin to communicate with us more.  She loves to watch Signing Time and you can see her eyes light up when she recognizes signs we do, even if she can't sign them yet. 

I have decided to start a new category on my blog all about Rebekah.  I am doing this for two (maybe three) reasons:

1.  To keep family and friends updated who are wondering about her developement

2.  To keep a record for myself so that I can remember when she meets milestones (or inchstones, as the case may be ) and so that I can celebrate her accomplishments.  When it seems that nothing is new and she is so far behind, I can read my posts to remind myself how far she has come.

3.  To put more information out about Kabuki Syndrome and special needs children in general.  Maybe something I post can be a help to someone else with a child dealing with similar difficulties.

I thought this would be a good time to begin, since she just had her first birthday.  We'll see if I can actually keep it up.