We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.

Sunday, July 1, 2012

Splish, Splash...

...Jake was taking a bath! It's been about a month since Jake got his fancy new bath chair and I thought I'd post a couple pics of his bath time fun!

Naked boy! You can see his G-tube in this pic
Jake absolutely LOVES his baths and has since day 1 when we brought him home from the hospital. He especially loves having his hair shampooed. If Jake was having a bit of a fussy evening, a little splishing and a splashing' in the tub easily brought about lots of smiles and has always been one of the best parts of our bedtime routine. Over the past several months it has become very difficult to bathe Jacob because he's lost a lot of his core strength and is no longer able to hold his body or head up very well. It became a bit of a hazard trying to hold Jacob up with both hands while trying to wash him up, so we worked with his doctors to put in a request to our insurance to purchase a special bath chair for the little man. Our insurance originally denied our request because the bath chair was considered a "comfort item". What!?! I am still annoyed at this!

For anyone who has ever had to buy any sort of adaptive equipment, you probably know that it's not cheap. The bath chair cost close to $700!!! You might think that it would be covered in gold at that price, but nope…just a bit of plastic and mesh fabric. We wanted to see if we had other options to get the chair faster than appealing with the insurance company (which could take several months) and considered buying it ourselves, but also didn’t want to break the bank. A special thanks to Chrissy, Jake's case manager at the Regional Center for the East Bay for all of her hard work in getting this special equipment approved for funding. We had the bath chair within a couple weeks!

Now that Jacob has his fancy new bath chair, it is sooooo much safer and easier to give him a bath. We’ve tried bathing him in the big tub and also used the shower hose in our big shower. Either way, he still loves his bath time fun!

Pretty please momma...can I take a bath??
This baby bath wash works great when the little man has a cold
Our little prince charming drying off in his favorite froggy towel

I should also add that Jake is over his summer cold. Yippee!! We were able to kick this bug to the curb within about 8 days, which is really good because Jake’s colds tend to linger for 2-3 weeks. The little man also has two new teeth – a big bottom molar (thanks to his oral procedure) and another new top molar that just made its appearance.

Colds and teething aside, we're looking forward to a fun week ahead!


  1. Awww I remember when he was so teeny tiny and you'd give him baths in the kitchen sink! Glad you were able to get him the bath chair....looks pretty comfy to me!


  3. Love the froggie towel. Jake is getting to be such a big boy! and so handsome. I want a bath chair!!! Thanks for sharing mama Sarah!

  4. So happy you got the bath chair worked out, Sarah. The whole insurance coverage thing is more than annoying. It's just plain insulting. Anyone requesting bathing assistance devices truly needs them. There is nothing "comfortable" when you need assistance devices. Score one for Jake, zero for the insurance company! he-he! :)