Wednesday, October 12, 2011

Miracles Do Come True

Kai still amazes me everyday-he is truly our miracle baby. Today was one of those days where I had to take a step back and relize how far Kai has come and incredibly strong he is.
For me to recall the first week of Kai's life was the epitome of an emotional roller coaster for myself, Adam, and everyone around us. We had no idea what we were in for and we felt like there was nothing we could do to help Kai, yet we still had this underlying emotion that everything was going to be ok, that he was going to be ok, and that Kai was not going to be another statistic. I remember telling Adam that he's going to defy the odds and he felt just as confident as I did about that statement.

I'll never forget the day the doctor told us about his brain bleed on his 5th day of life and gave us the "option" of continuing life support. I couldn't believe anything she was saying because even as tiny and helpless as he was then he still had something about him that made me believe he was a fighter and nothing was going to hold him back.

I feel like I've told this story 100 times (and I might have) but it never gets old. Every time I share the story of Kai's miraculous journey into this world I am always overwhelmed with the fact that he was and still is so brave and was meant to be here with us.

I only bring up this story because it seemed as if his brain bleed was going to be detrimental to his health from that day on and anything that would go wrong would be due to his severe grade four bilateral brain bleed. As you all know the bleed has been resolving on it's own, however we were also told that we would not be able to tell what damage that bleed had done and what Kai would be capable of doing.

Well if you've seen Kai lately you'd never know he was born 3 months early by looking at him and watching him. I can't even begin to tell you how well he's doing right now. Aside from a few "typical" preemie things he is overall NORMAL in my book and maybe in a few doctors too! Seriously, a lot of the professionals he's been seeing lately (GI, Opthamologist,OT...) feel like his overall health and state are very impressive. They're are impressed because it's unusual for a preemie born as early as Kai to do so well. It's possible obviously to do this well, but only a small percent-especially considering his brain bleed.

Today he had his usual OT (occupational therapy) appointment and it went well. She just did more stretching and talked about how well his muscle tightness was and how perfectly shaped his head was and she kinda went on and on. So positive, I loved it. We also weighed him and he's still averaging 7-10 ounces each week making him 11 pounds 4 ounces! What!?!

Following that appointment was Kai's first Cranio-sacral therapy session with a Physical Therapist. It was an hour long of enlightenment and excitement. She basically pointed out most things I already knew about Kai's body and that he could use work without a doubt, but not on a severe basis. She felt around his body and his head and did something and said he was a fast healer-I know :) he sure his. But she was referring to something she had just done that helped release something. (Sorry I'm so vague about it, I usually forget details on the first visit) I told her his complete history and she just could not believe he had all that baggage and yet portrayed himself to be a healthy little infant. She was great in so many ways and I'm so glad we saw her today and will continue to see her. I also asked her what I thought might have been a silly question, but I basically asked her if it was too early to tell if he had any traits of having cerebral palsy and she shook her head and said no, he's fine. She didn't hesitate to answer me and said it with confidence. She told me that you would be able to tell if something were off this early and all she found was just a lot of tightness in his trunk to upper area due to prematurity and felt a little "strain" on the left side of his head, which was not a big deal as his course of treatments should help.
She said just like his OT said that anything that needs work on now has nothing to do with his brain bleed. This appointment was just another testament to how well loved Kai is and the power he posses to be just as strong as any other healthy kid.

So Kai will be seeing this PT for cranio-sacral therapy every week to every two weeks to simply help adjust his tightness and work on developmental areas. I'm so excited she can help, however she doesn't take Kai's insurance so I'm setting him a fundraiser to help pay for thaws appointments! Each visit is $75 and it's unclear how long he will see her, but we really want to make it happen so the link will open up on this blog to take donations :)
Although he does seem so healthy and stable, we want to make sure he is still challenged enough to keep thriving and stay on the right path!

On top of all that, Kai has been the most amazing most adorable smiler I've ever seen! He smiles a ton these days, I'll try to get a good picture of his huge grin!

Thanks to everyone for thoughts, prayers, and love! Kai is forever grateful as are we!

4 comments:

Gramma said...

Ashley- you are a strong, and amazing woman and mother! I am so proud of you. Love always, Mom

Unknown said...

The faith you and Adam have is amazing and Kai is proof of that. Thanks for sharing with us.
Love Papi.

Donni said...

What an amazing story and picture. You and Adam have been such great parents to him - he and you are richly blessed. Thanks for doing the blog and pictures - so inspiring! He is so cute and what a strong little boy!
Hugs,
Donni

Robin said...

I am, as I have so often been this last year, so proud of you. And just constantly amazed at the miracle that is Kai Leo. God is so good!

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