The last couple weeks have entailed trying to set up some new routines around Gabriel’s G-tube and feeding. We have a whole new set of medical equipment-bags, syringes, pump, hangar, etc, etc.

We got the pump for over night feedings for G a couple weeks ago. We jumped all of the insurance hoops and supposedly had “approval” for it to be covered.

Then the day it got delivered the rep explained that insurance may or may not be covering it. Super GRRRRRR! So for now we have it! If insurance doesn’t cover it we will have to decide if we want to pay out of pocket for the machine rental and bags or quit the treatment (which would be several hundred $ a month). We are documenting everything and plan to FIGHT to keep it! The whole diagnosis and point of the G-tube was for him to have overnight feeding.

Now the good news. Gabriel’s energy levels, attention, and ability to communicate improved immediately when we started doing the overnight feeds. We are still learning how to use the pump correctly. One night it just didn’t work correctly. G was noticeably more irritable and less communicative the next day.

When I say communicative I am referring to his ability to articulate what he wants, what he is feeling, and participate in conversation. These last couple weeks have been so enjoyable as his parent. He is able to follow directions. He is loving to play and giggle. He loves to do things that get Chuck or I playing or laughing with him.

I don’t dread taking him the grocery store with me! He can actually help a little bit and we talk about the foods he wants to get, etc. In the past grocery shopping was sooo hard. He would melt down multiple times every trip. Run spontaneously through the store ripping things off the shelves.  In contrast, now that he is able to communicate he can tell me what he wants and we can go get it!

We went to  local amusement park last weekend and we all had so much fun! He was able to stand in line and wait his turn! (well like a normal preschooler) He and his cousin made up silly inside jokes about their favorite rides.

He seems happier too. He is humming and singing to himself almost all the time.

It feels like several of the recent steps have been significant in unlocking his ability to participate in the world. As I am watching him come more and more into himself I understand why he spent so much time emotional and frustrated. I feel like the ADD meds got his brain to slow down enough to process (receptive communication) and now the nutrition is giving his body and brain the ability to participate in the world.

Exciting and heartbreaking all at once! I am so proud of how well this kid handles all the insane things he has had to endure. For now we are celebrating that things are going well!

After several weeks of slowly adjusting Gabriel’s Valpo and ADD medicine, we had a great day yesterday!

Gabriel was alert, attentive, and articulate! He was able to answer questions quickly and in context. He engaged in play both with me and by himself! He put his own shoes on (before I asked!) and even used the potty! He only had 1 breakdown, it lasted 5 minutes then he moved on!

Today started out wonderfully as well. He helped me cooked scrambled eggs for breakfast. He willingly got in the car to head to his day camp at church. He put his backpack on to walk down the hallway, and even greeted his teacher!

Everyday is new and different. I am keenly aware that tomorrow could be crazy full of emotional breakdowns and impulsiveness and silence but yesterday…was AWESOME and I hope for many more days just like it!

A facebook friend recently posted something about those moments when you see your child shining through neurological challenges. Those moments are beautiful and precious! My hope and prayer is to see more and more of G shining through Doose. I also hope and pray for other parents to see more of their own children shining through whatever neurological, physical or emotional challenges their families are facing.

HI Readers,

I am starting a new series on our family’s journey with cleaning, purging and organizing our lives.

I set goal of reducing the number of objects in our house by 50% in 2014.

Yep 50%.

Last year (2013) my goal was to give away at least one minivan load of stuff each month. I had successfully completed this goal plus some. Still, our house was overflowing with things we didn’t need and/or use at all.

So, I set the goal for this year and started posting my adventures on facebook.It is awesome getting feedback from others who have been inspired by my crazy journey. I have loved that people are sharing their own stories. I get pictures of things heading to donation centers, articles of inspiration, and notes of thanks and encouragement.

After months of saying things like “We don’t need 1/2 of this stuff”, or “we could get rid of 50% of the stuff around here and never notice”, I had stumbled upon a goal. I haven’t been legalistic about it. I’m not counting the number of spoons I have and getting rid of 1/2 of them. I am picking different areas and ruthlessly purging. Sometimes I work for hours and do a whole room, sometimes a few minutes and attack one drawer. I get easily overwhelmed so I give myself a lot of grace.

We’ve been at it a full 6 months and I am seeing a difference. It is much easier to find things now. Cleaning up at the end of the day is easier because more things have a home. We have been able to bless others with things we didn’t need.

Here are a few of my favorite tips I have employed in the last 6 months:

1. Trash Only –I have 2 different methods. Sometimes I will set a timer and see how much trash I can find around the house in 15 minutes. Sometimes I will choose one area or room and look for all the trash in that space.

2. One small space at a time. (i.e. one set of bathroom drawers, top of desk, laundry room shelf). I empty everything out of that area. Then sort into 3 piles: Keep, Give Away, Throw Away. I put the keep back. It is always great to see how much better stuff fits. Most times I try to organize it well as I go. True confession time: It doesn’t always happen, however at least everything in there belongs 🙂

3. Always have Give Away Boxes/Bags. On each level I have either a bag or box of things that will be given away. It makes it easy when I run across something we no longer use. Just toss it in the container. (I have separate bags from separate charities at this point, because I’ve been at this long enough that I know which organizations need/accept what items).

Here are a couple resources that I have used to inspire my ideas:

1. Fly Lady- She has TONS of great tips, ideas, routines. She starts simple and adds from there. Her website has TONS of great ideas, and tips.

My favorite tip from the Fly Day is to your clean your kitchen sink everynight before you go to bed. This was a HUGE help while we were doing the Keto diet.

www.flylady.net

2. Peter Walsh
Walsh is a professional organizer who does a lot of daytime tv segments (Rachael Ray, Oprah). I first saw him on a TV show called Clean Sweep, where he and a team would go in and rescue a families who had been buried in their own stuff. He has several books with great tips and tricks.

My dream would be the have Peter Walsh come organize our home. Thankfully, we are not to the level of the TV shows rescues he does.

My favorite tip from Peter is what he calls the “trash can tango”. Each family member grabs a trash bag and has 5 minutes to fill it.

http://www.peterwalshdesign.com/#&panel1-3