Oh it's been a long winter....

Oh it's been a long winter ...and we are not quite out of it yet. Polar vortex and all.

Jacob's house has been a bit melancholy these days. We lost our beloved Aunt Berta a couple weeks ago and we are deeply broken hearted. We really aren't ready to talk/blog about it yet, emotions are still too raw... tears float too close to the surface..... but it feels wrong to start a blog post in our current sad state without mentioning it. Truth be told, if I could hear her whispering in my ear - and sometimes I swear I can - she would be telling me to get on with it... How's Jacob doing? What's he up to?

So, well, I'll get on with it. (sigh...)

On the eating front, the good news is Jacob is doing well. He's eating more and more every day and gaining confidence. He's full of energy, happy as a clam and sleeping well. So what's the bad news? The bad news he was still losing weight, 20%(!) total since we started. Which is a lot on a little guy. That coupled with a double ear infection that led to a sinus infection and multiple rounds of antibiotics led us to decide to supplement a little through the tube at night - when he's asleep and doesn't know we are doing it. Bummer.

We are watching closely to make sure it doesn't impact his progress of intake by mouth during the day and so far it hasn't. And at the last weigh in this week.... drumroll.... he had gained 5 oz! Yes, we realize 5 oz doesn't sound like much but it is the first weight increase since we started this process in early December. So, yay. (Yay!). When he gains a little more we will start reducing the nighttime supplements, but in the meantime we will keep plugging along.

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How do you eat avacado? Yum!

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In other news, the weather broke last weekend, at least for a couple days, and boy did we need that sunshine!

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We couldn't have gotten any *more* excited.

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And last but definitely not least, Jacob has a new friend. A best buddy... a pal. They play together, they do therapy together, Jacob can say his name (over and over and over) ...and best of all....(!) ...this new friend has finally (finally!) helped Jacob learn how to go to sleep all by himself. As long as his buddy is snuggled up with him.

I was lucky enough to capture the moment that they first met...

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Foto Fabulous Valentine Friday

In honor and celebration of great big love..... Happy Valentine's Day! to everyone from Jacob and his Aunt Berta.

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Jacob. Down Syndrome. Advocacy. What's Hot.

“Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it’s the only thing that ever has.” -Margaret Mead

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There are some changes that we chose and there are others we don't... changes that we embrace or struggle against but are recognizable both in there timing and progression. Then there are the changes that are so stealthy that when you look into the mirror, the difference is hard to pinpoint because what you see in the reflection seems to have always been there even though you know it might not have been.

And so it goes with advocacy and the intensely sharper focus of that advocacy when a specific little person's future is involved... which then translates so easily to the future of all the other little people just like Jacob.

This Down syndrome advocacy bug didn't bite just Jacob's parents, I suspect it has bitten most everyone who has met him in some way.

So, as the world is full of good causes that are hard to keep up with I thought I would occasionally do an advocacy post of topics and issues that are currently hot, including actions that can be taken to support them if you so choose.
 
Enjoy!

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TWO THINGS

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1)

Financial planning is tough. We are not experts yet but we are working on it and the fact that it requires workshops and lawyers is some indication of how complicated it is.

 

The ABLE Act isn't a silver bullet but will provide a very good tool to help!!

The ABLE Act

The ABLE Act would amend the tax code to create tax-free savings accounts for individuals with disabilities and provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts.
 

WHAT TO DO?  
The simplest way to vote for support. Sign this petition on Change.org >>>>>>> LINK
It's getting a lot of attention on social media - so share with friends!
 
If you are a glutton for detail, more information is here >>>>>> LINK
The link above has additional direction for how to contact your legislators to encourage them to sponsor the bill the old fashioned way.

For the overachiever multimedia crowd, here is a link to the media page that will give text to cut and paste onto various Government Facebook and Twitter sites. >>>>>>> LINK

 

Thank You!

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2) 
If you live in Maryland, I am about to encourage you to support legislation that requires medical institutions to not be stupid. Isn't that what policy is for? Argh. I hate stupid laws, but sadly I think it is warranted given the horror stories I have heard from parents about their experience with medical professionals/institutions after prenatal and/or post birth diagnosis of Down syndrome. Everyone has a story. Not a few, not a majority, EVERYONE has a story about someone in the hospital or doctors office... most of the time from the Doctor (the docs!) making some awful ill informed comment or presenting outdated, miserable information - OR - sending them home with a pat on the head and no information at all.

So.... Here's the law ....    >>>>>>> LINK

.....that will require the health department and the like to have info available (info from this decade!) - duh - and that any institution or facility that may be making a diagnosis also have current info available as well as contact information for the local support groups.  

WHAT TO DO? In the link above, click on the name of the sponsoring senator and that will take you to his contact info. You can email him to say you support it. And/or contact your own representatives to say the same thing.

There is a hearing at the end of this month I believe so if you are so inclined, the sooner the better.

Learning about a Down syndrome diagnosis can be jolting and scary, it shouldn't be made scarier and more traumatic by ill informed medical professionals. Especially when the truth is that while new parents are faced with the daunting task of learning about a whole new world they may not have been prepared for... that new world may have challenges but is equally full of hope and possibility. 

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Foto Fabulous Friday

 

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Settling in to Normal.... ish

Jacob's Journal has been quiet in the wake of the tube wean... which then rolled into holiday madness... including hectic but well worth it travel and visiting with family and loved ones. In hindsight, the idea of continuing the eating quest on our own while traveling multiple locations and in the midst of the upheaval of routine that is unavoidable during the holidays was questionable, but we never seem to shy away from insanity so why would we this time? We all survived but Jacob's Journal was clearly neglected.

Life is finally getting back to normal, holiday decorations put away and all.... and daily routine back in action.

On the eating front. Jacob is doing amazingly well.

The transition home was rough. Big ups and downs and downs and ups. When we returned home he was squarely back in the house that he didn't eat in, in the chair where he always got his tube feeds (we had to move the chair he normally sat in to a different spot at the table - and also did most meals on the floor initially) and it took time and patience and many phone calls with our therapists to get us all through that first couple weeks.

French fry examination at a rest stop. Holiday travel food therapy.

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Somewhere in the process he made an odd 180 degree turn and has decided he likes eating better than drinking... currently pushing away the sippy cup.... which is troublesome. BUT he is eating - Eating! - really really really really well. And it's a hell of a lot easier to load puréed food up with calories and a variety of liquids. So we are cheering on the amazing eating progress and being patient with the drinking strike.

Notable notables:

• This past Monday Jacob had his first weight check (we do weight checks ~weekly) since we started the wean that did not show weight loss. Jump for joy happy and relieved! Some of our background/baseline stress was watching him lose weight through this process. We knew it would happen, we understood to be prepared. We knew he was doing well, making great progress. But all the rationalization in the world doesn't help when you continuously see numbers drop, drop, drop (13% weight loss total). So this week the dropping stopped, at least for now. Whew!
• It has been over 30 days since we have used the tube for food (although we were still occasionally supplementing liquids while he slept).
• It has been 7 days since we have supplemented liquids. (That's 7 days that we haven't used the tube at all!)
• He routinely eats 18 - 25 oz. of puréed food per day. Mostly veggies (although Jacob's Mom sneaks in yogurt and milk for dairy - and some beans and tofu for added protein).
• He has sufficient wet diapers every day and... wait for it... drumroll..... Pooped every single day for the last 6 days. Woot!

• Last but certainly not least. Jacob ate a banana(!). Yes we squished it up... but still... a whole banana! Here is what happened. Jacob was playing with his toys. He looked up at Daddy and signed 'eat'. The closest/easiest thing at hand was a banana. So Dad thought he would give it a shot. He mushed up half the banana and Jacob gobbled it up, so he mushed up the rest and Jacob gobbled that up too - then went back to playing.

How mundanely normal is *that* story!?!? Amazing. Who knew mundanely normal could feel so good!

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