I survived the first night with Brendan’s new plan and did not sleep very much. He is doing exceptionally well with it all day, but when he is asleep, his body has a hard time with the extra fast volume. Who wants to be fed in their sleep? His heart rate goes up and his sats go down, I had to turn up his oxygen quite a bit to help his sleeping body deal with the changes. Once the hour of feeding is done, everything goes back to normal.
We have made some adjustments to his schedule so hopefully he doesn’t have a problem tonight.
When I hooked his food up at 5:45 this morning, it woke him up instantly and that was it for the morning.

We went across the street today where the neighbor was having a yard sale and bought this machine for $2. (They also gave Trevor this huge Christmas train set for free! We will have to set it up around our tree this year)

Trevor loves ice and always wants to crunch ice chips. I hope that this soft flakey shaved ice is better for his teeth but still makes him happy. Ice chips have been known to stop tantrums. Trevor is signing “Cold!”

My ‘eat anything!’ kid has turned in to a ‘eat almost nothing’ kid. He used to down a cup of mandarin oranges before you could say ‘mandarin oranges’. Now he flings them instead. He even turned away strawberries. He spits out or throws a lot of things he used to love. I understand it is a common 2yr old phase, but it still is tough.

We play a game called “faces” when he is in his high chair. He works on his acting. I say “Make a HAPPY face” and he gives me this silly pretend smile. At least I have an idea what his “school photo face” will be like.

“Make a SURPRISED face”

“Make a SAD face”

Of course, he has his YUM face and a silly face and a fish face and a mad face, I will have to try to catch those.

Here is a BRENDAN face

On the productive parent side of things, Bill was trying to decide between overseeding/fertilizing the lawn or scraping the old popcorn off the playroom ceiling. He opted for the indoor activity. The room renovation is underway.

And here is some video cuteness.

I am thrilled with how well Brendan has handled the big change in his feeding strategy. I am not looking forward to the weekend with no nursing help because this new plan is very time consuming and annoying. Every hour we have to switch the pump on or off and manage the formula right so it isn’t sitting out too long. We have timers set to help us get it right, I look forward to moving on to the next step. It is only short term! I am just relieved that there was no vomiting today!

Trevor woke up with some mega bedhead

What?!

“Hi, Friday garbage truck!”

It was making a special pickup for the house on the corner that had some tree damage

Trevor is getting better at independant play. He loves the playroom, I can’t wait until we can get this room finished

Brendan is showing off how he likes his sippy cup with water

He loves to try to open his food pump now and put his thumb on the gear as it turns. Naughty Brendan!

The camera realized right before I did that the lid on the bag was not closed. “Uh-oh! Man the pumps!”

Click here to make a donation to HopeKids for Brendan’s team – HopeWalk Oct 19, 2013

I have been waiting for a low-picture day to be able to post this info. On October 19th, we are all participating in a charity 5k walk to benefit a non-profit organization called HopeKids. Brendan recently became a HopeKid and we have already grown to appreciate what they are about. We look forward to getting out and being able to do things that are made accessible for special kids. We connect with other families that share our struggle. It is a drop of sunshine in the gloom for so many families.

More info about the organization on the Hopekids.org website

We have our team together – “Li’l B’s Crew” and we are fundraising for Hopekids. We have been training for the walk and we are getting stuff together to make our own special shirts too! It doesn’t matter if you can only donate $1, please help Brendan’s team raise as much money as we can for HopeKids!

Click here to make a donation for Brendan’s team’s goal!

I am not a great salesman, but I hope you believe me when I say this is a very good cause. If you are interested in walking with us that day, please let me know asap!

On a regular blog note, Brendan has some big challenges coming up starting tonight. We saw his GI doctor today and got a whole new plan for his food intake. He currently gets about 40oz of his formula mix through his tube each day. That is not changing. But instead of his current plan of steady drip for 19hrs a day, he will be getting all of his food in 9hrs, divided in to nine 1hr segments. It is going to be a big challenge for his little digestive system, but it is a step in the right direction to getting him to eating meals at mealtime. I am nervous for him, so we are going to sleep and dream about a day with no vomiting tomorrow. He can do it! It is extra work for us, starting and stopping his pump all the time, but it is just a step along the path and should change again soon if he does well.
He is also starting some probiotics to help correct all the damage done to his “flora” with drugs. The doctor was happy with his weight and growth!

Trevor was a very good boy at the appointment too and ran some errands with me this afternoon. His new favorite word to say is “SCISSORS”. A two year old that loves scissors is just what I need!!

I really don’t have pictures from today, so I had to go to the iPad and see what Brendan has been up to with the camera. He’s got quite a gallery going.