Hearts

It's been a few weeks since I updated! Thanks to everyone for their thoughts and prayers and wishes. We haven't felt alone on this journey.
Things have been up and down. We all had a cold. Henry doesn't manage colds very well. It exaggerates his gag reflex, and makes feeding difficult.
We met with a PT, an OT and a SP last week. We're putting some plans together for goals on oral feeding and in his speech therapy we have decided to start getting Henry ready for a couple of switches. We use his right hand for yes and his left hand for no. We tap his hand on the correct side to indicate a positive or negative response. Later, he'll have a switch with several options that he can click through to communicate with. It's exciting, and I'm trying to stay in the moment. I don't want to be disappointed later.
Henry's feedings are getting better. But earlier this week, he slept for two days, barely waking to smile and snuggle his stuffed puppy. I feel like he's been gone for a month now. I miss him!


Anastasia is gearing up for the Book Sale. All proceedes will be sent to the United Cerebral Palsy of Oregon. She's got a great venue for free, and an interview on a local radio station. But she NEEDS MORE BOOKS! We've been collecting for weeks, but need to boost our efforts in the last weeks!

Next week is a slow one for appointments - just the fitting for his braces- Hopefully! The following week, Henry's birthday, we meet with an Ot, the Pt, his Education Specialist, his Gi doc - we go to a Low Vision Clinic for his official vision impairment diagnosis, and we meet with a nutritionist to discuss his tube feeds and the introduction of solids.

Now, what to do for his birthday. I want to have a birthday party for him. I know he won't understand that it's a special day, but the rest of us do. What should we do? No one is eating sugar, so cake is out. We're not eating pizza, so that's out. Henry doesn't have a favorite meal, so I can't make that for him. How do we celebrate his special day? It falls on Valentines Day. I wonder if we should have a theme? Hearts and love seem appropriate. Spell out Happy Birthday with cut out hearts, and decorate with paper heart streamers!

One tough cookie.

We slept well last night. Lew woke only once. Henry woke at 4:20am. I rocked him back to sleep by 5:30 but then it was morning.
Our day got off to a slow start because the doors to the van were frozen shut. Anastasia and Zane missed their orchestra class and were late for school.


Henry made it to his follow up appointment with Dr. Wadie seven minutes late. It was a quick check up. His site is healing nicely, and we trouble shot some of the retching issues. We need to slow the feeds, and keep at it.
He'll adjust. His stomach will stretch. He's lost 1/3 of the capacity that he had before, so tolerating even half the amount of before causes his stomach to distend, creating gas and the need to vomit. Retching threatens to pull the stitches and undo the nissen fundaplication that is responsible for keep his food in him. The Gtube cause reflux, which causes retching and the cycle begins... We also need to start putting gauze between the gtube and his skin because it's causing granulation tissue, which just means bumpy scar tissue and little bitty sores.

So, we're off on another adventure to discover how much we can handle. I'd rather face the long lines of a ridiculously short roller coaster, but the universe had other plans...

One week down...

And, we're down.

We've been doing this g-tube feeding now, for a week. It's difficult. It's painful. It's discouraging.

We are supposed to do 4 bolus's and a 12hr feed over night. The bolus's need to be 120ml over an hour. However, if he gags and retches, we are supposed to pause the pump, and turn him on his side. We check to see if there is any gas build up. We comfort him, and then continue on with the feed. Sometimes, by the time we are finished with a feed, it's time to start the next one.
And, if his tummy gets too full, too fast, he not only gets a lot of gas, but then has diarrhea. And with Diarrhea comes diaper rash.
Because Henry doesn't have much range of motion with his arms... when he cries, he moves his arms and fists up and down on his belly... almost dislodging his button. I have it taped down so that he can't accidentally rip it out.

He has been happier the last two days. But he's also been low on his tube feeds. About 200ml short.

I'm trying to stay positive. I'm trying to keep my attitude in check.

I feel like we're all trapped in this cycle of feedings. By the time we finish one, it's time to start another. What if I need to go tot the supermarket? What about all of Henry's appointments? How in the world are we going to get him all of the nourishment that he needs, if the g-tube doesn't work?

He's sleeping now. He's had a good day.
I will be grateful for that. And tomorrow, we'll try to get more calories into him, without pushing it too hard.

I will 'take it easy' and try to find some time and energy to play games with the big kids, before winter break finally ends.