This summer we were on vacation up on the Olympic Peninsula visiting our friend Irene and her family. August must have like their carpeting and the amount of grip it gave him because he walked across their house over and over with much laughing and glee. The vacation house we rented at the southern tip of Hood Canal provided more practice space for walking. So, now we have a walker! He is officially walking independently, running and attempting backwards walking. He is also working on getting up from sitting to standing without pulling up on anything.

We had some doctor’s appointments scheduled, including a consultation with Dr. Lashley, his urologist, to talk about an upcoming surgery. Everything has been postponed while I recover from a shoulder injury and nerve damage and RSD (CRPS).

The last time we used August’s tube for nutrition was July 9, 2010. We had been in Graz for five days. We removed his mic-key button at the end of November. These are some changes I’ve seen in August.

more verbal
more tolerance of stimulation
using walker more
walking independently more (still very wobbly)
more signing
mimics behavior and sounds
pretend play
follows simple two-step directions
almost completely stopped gagging himself (will still do it in car when he can’t get to his bottle)
maintaining and slowly gaining weight
on NO medications
digestion is regulating
handles colds and illness without intervention
he is happier and more comfortable in his body
climbs on everything
wants to eat all the time
asks for food a million times a day
is EATING 100% ORALLY!!!!!

Today is August’s 4th birthday!

August is taking off! On Monday he slept in the middle of the day for over two hours, I could not wake him up. We have been trying to not let him nap so he sleeps better at night, but I let him have his sleep and the next day at preschool he took five steps! I love these developmental spurts–it’s just how it happens with typically developing kids. He is more vocal, louder, willful and plays more independently. I love watching him change and progress. It is amazing. He is knocking on the floor saying hello. He holds his stuffed cat and has it play the guitar or dance. He holds his animals from the mitten story and makes sounds like the animals are talking. I am in awe. We took him off the path he was on (sentenced to) and sent him in a new direction. He wants to walk all the time. He asks to watch Signing Time DVDs with signs! He has developed quite a variety of signs and sounds. And since we’ve taken that chunk of plastic out of his belly his skin has cleared up. For the first time in his life he doesn’t feel like a reptile. His skin has always been red and bumpy and rashy and inflamed with red patches here and there. So much better.

This is such a nice change. We’ve been on the plateau for a while, it is so nice to see progress again!

And we are working on spreading the word of Graz and getting other families there.

Thank you to everyone who
supported us in our quest to get him off the tube feeding. We could
not have done it without you! Many blessings to you this Holiday
Season and New Year.

Kind regards,

Johnny Levenson, Janet Funk, August Levenson, Porter Levenson

We did it! August’s button is gone. Janet performed the simple procedure last night as August slept. We gave him a very small amount of sedative before bedtime to ensure he would stay asleep. She removed the water from the balloon holding the tube so the tube slipped out easily. She then covered it with gauze and a bandage. He was very chipper this morning, as if nothing happened.

Thank you to everyone who supported us in our quest to get him off the tube feeding!

August, Janet, and Tigger went to Keniworth Park recently. Click the images to view larger versions.

This has been such an interesting and intense trip. I am sitting on a bed in the Mariott Hotel, south of Graz, near the airport. There’s nothing around here. Desolate industrial park, next to a lake resort where people live/camp for the summer. There is an adrenalin park at the lake, a bunch of playgrounds, boats to rent, zip line across the water, restaurants and beer gardens. But no one is going there. It’s empty.

We are heading back home to Portland in a few days. August’s three-week tube weaning program ended last Friday. We thought we were going to pull out his button and toss it in the river. We didn’t. We thought he would be eating and drinking a ton of calories by now, he’s not. As usual with this unique little guy, nothing is going as I thought it would. August has never followed anyone else’s schedule of “developmental milestones”. He has always performed the unexpected. When doctors talk about the small chance of complication or the minimal occurrence of failure or the normal course of events, I just look at them and say, “well this IS August we are talking about and we should expect the unexpected.”

With a 96% reported success rate for this program, I expected August to not be one of the four percent. I hoped we would go home tube-free. I expected him to learn how to eat enough orally to sustain himself. So far, this is the progress that I see:

August does drink more milk (he was up to 1/2 liter a day)
He is able to control his saliva better (less drooling)
He is interested in eating more, and does eat more (at least puts more in his mouth)
He is able to concentrate on an activity for a longer period of time

What I continually remind myself is that we have not used August’s tube for nutrition since July 9th. And that is pretty awesome. We have never been able to do that. He has lost a bunch of weight, down to 9.25 kg from 9.9 when we started, but the average weight loss for kids who go through this program is 10% and he’s not there yet.

The hospital absolutely counts August as a success. We learned a lot, we will bring a lot of new tools home with us, but there is still a part of me that says, no he’s not eating. He’s not able to sustain himself. We still worry when he doesn’t swallow his food.

When he was drinking so much dairy, he was pooping several times a day. Suddenly he stopped and he hasn’t gone in several (5???). I have lost count. We have tried enemas, suppositories, laxatives, softeners, massage, warm baths, etc. If anyone reading this has a suggestion (I am thinking alternative med ideas like herbs, Chinese herbs, acupuncture, etc.). Please post a comment with your thoughts on getting this kid moving again. Since the button is still in we can put in any nasty-tasting things we want.

We went to Salzburg for the weekend and Johnny was laid up with what we thought at the time was food poisoning, but four days later when I got it, we were suspicious. Porter spent the past two days with the same thing. Miserable, barfing, unable to be upright. Gross stomach bug took out 3/4 of us.

This has been such a wonderful and difficult journey for us…for all the families here that have to feed their child through a tube. I have met some wonderful families. It’s been so comforting to be around other parents who “get it”. Who understand the isolation, the frustration, the absolute fear we live with when our children don’t eat. Can’t eat. We have machines keeping them alive. We rely on plastic buttons, tubes and bags. We spend a small fortune on supplies and tests and surgeries and appointments and therapies. We’ve spent hours that add up to days, that add up to weeks in waiting rooms. We dread taking our kids to the doctor or the hospital for their health needs for fear they will catch something. We don’t sign them up for play groups or music class or pre-school. We don’t take them to indoor playparks, or messy art, or mom’s group. Mom’s group? It saved my life after Porter was born. I can’t let Porter go play with his friends if anyone in their house is sick, for fear of August catching something. The other parents here–they get it.

After getting our hopes up that August’s button would be removed today…it’s not. He is just not eating enough calories and his weight is still dropping. We will probably have to wait until we get back to Portland to take it out. I don’t know what else to post. We just continue doing what we are doing and remain hopeful he will figure it out and start eating more and more. The heat does not help with the food consumption.

We did meet a really nice mama in the park last night. She is from New Orleans, living over here with her Austrian husband teaching English. She has a little guy named Sam, lives near the hospital and offered up her apartment to us to stay in for free while her family is traveling. We shall see if it works out.

Weight is still fluctuating a bit, but so far only lost a little bit since we’ve stopped the tube feeds on Friday. Still planning on removing the mic-key button tomorrow. If all goes well we will train it over to Salzburg for the weekend. Should be a beautiful, more typical Bavarian town with castles, mountains and soft pretzels. We will be singing songs from The Sound of Music.

Wanting to find different accommodations in Graz, something a bit more convenient as far as location, proximity to restaurants and the tram and a place where we can get on-line. Now we can only connect when we are in the hospital.

Therapy continues to go well. August is a star at the play picnics. Eating (and actually swallowing) and drinking tons of milk. We need him to start drinking water and believe that this will come along, especially in the hot weather.

Swimming this morning in the warm water, speech therapy next. Porter continues to be so helpful.