I don’t even know where to start today! I hope I remember everything I wanted to write.
We started with breakfast as usual, but we had a doctor’s appointment today so we had to figure out the day.
We were getting everything packed and Brendan was just showing off what he can do. He got up like that all by himself.
We had an 11am appointment with pulmonology at the hospital clinic. Brendan got all dressed up and even put on shoes! He couldn’t help but wave them around and also try to bite them.
The appointment was awesome! She was really impressed with Brendan and he has some big changes ahead. First, tonight is going to be the first night in just over a year that Brendan will NOT be on a ventilator!! A year ago on the 25th, Brendan got intubated after he failed to breathe on his own after his open heart surgery. A year ago on the 27th, he got his trach so that he could be safely on the ventilator. Over the course of this whole year, he has grown so well and worked so hard to sprint from the vent. He might be ready to leave it behind for good!
He is going from using it only at night for 6-8 hrs to completely off starting tonight. I can’t believe this day is here!
Even better news, without the ventilator, there is no need for Brendan to have a trach. His doctor wants to push aggressively to get the trach out. He now has a six month plan (or less) toward permanent decannulation. It is a steep mountain to climb for him, it will be tough and there are lots of processes along the way. It is all up to Brendan, but we could celebrate his 2nd birthday without a trach!
It is all moving toward the wireless model of Brendan, which is good because we keep running in to trouble with his new mobility!
Trevor and Daddy had to drive me and Brendan to the appointment. Because of the timing of everything, Trevor had to have a picnic lunch in the car. He had a good time, he likes climbing all over the car. When we got home, Trevor took a nice nap and Brendan did not!
Then it was outside to play. Trevor loves to throw balls now, especially over the wall.
He entertains Brendan with antics while Brendan wears the speaking valve. He wore it for a total of two hours today including one stretch of an hour and 15 minutes non stop!
Brendan finally figured out he can crawl down the step to get outside. He keeps getting stronger!
I thought I had taken the most adorable video ever of Trevor running around and squealing at the dogs and Brendan squealing at Trevor squealing. We were laughing so hard, it was so cute! But when I went to download everything, it doesn’t exist on the camera. I must not have been recording after all.
This video is also adorable and has lots of cute Brendan making sounds. He is so funny, he just cracks me up.
We can’t wait to see how Brendan does tonight. I am just in disbelief that all of the medical equipment is slowly heading out the door. There is a glimmer at the end of the tunnel!
Wow wow wow Brendan! I couldn’t believe all the good news you had today when we video chatted!! Then watching your videos tonight, it is obvious what great progress you are making very quickly now. Once you got out the door, you took off so fast! I can’t believe how long you wore your speaking valve! It is wonderful to hear you making sounds and hearing your voice!
Trevor looks like he is doing a “River Dance” for Brendan. That is one big ball he is throwing over the fence! It’s too bad you didn’t have your other video, but I’m sure there will be many more amazing videos to come. Things are changing so quickly now!
I hope it goes well without the ventilator tonight. Brendan seems to have taken a big leap in his development. I’m so happy for him, and for all of you as a family. I hope things will keep getting better and better.
Sending lots of love,
Gramma xxxx
Brendan is doing so amazingly well! Keep up the great job! I love the picture of Trevor where he looks like he’s dancing!
Way to go Brendan…..Prayers for last night hope all went well …..Two mobile 2 year olds. whoooo. They are both such a blessing…
I am so excited!!!!! Yeah Brendan!!
The videos are so cute. Its just to wonderful to hear Brendan’s giggle and now this awesome news. Hope all went went last night.
The next chapter will be “Brendan Untethered” and then you’ll really be in trouble with Trev and Brendan both mobility…and you thought you were on a roller coaster ride already. 🙂
Much love to all of you. Tiff, give all of your boys a big hug from me.
It is SO amazing to hear that Brendan could go wireless soon! Food in his tummy and mouth mean no tube soon too, right? No trach would mean a world of difference – no more tie changes and tangled tubes. Brendan looks like he will be the boy who watches, waits, complains, then does things when he is good and ready – then he goes all the way! I agree with Gramma – that sure does look like river dancing to me!
Yea to Brendan and his unreal progress, this has a lot to do with his care also. Trevor just keeps getting funnier every day.
Wow, such great news!! I LOVE hearing Li’l B’s voice too! And Trevor dive bombing him while he is crawling made me laugh out loud. I really, really wish I could be there to chase both boys around – I can’t wait to see them again!
Only yesterday as I was reading the blog, I was thinking about when it would be time for Brendan to become independent of the ventilator. Today I see that the time is now to see if it will happen. Yay, Hooray!!! Brendan !! 🙂 🙂 🙂
I can’t help thinking that maybe Trevor had a lot to do with this progress, providing the incentive to “get up and move”, and get strong enough to be able to leave the tubes and machines behind….”Way to go”, Trevor !! 🙂 🙂
Brendan, I fully understand how it could be, that the first time you heard your own voice, it was startling to say the least. You have overcome that, and your voice sounds great !!
My hopeful prayer for you, Brendan, this day, is that you are strong enough to truly, no longer need the help of that ventilator, and that your “days in the sun” have finally come.
Tiffanie, Bill, you are *miracle workers* !! 🙂
Two, Two little miracles !!, called Brendan, and Trevor. ** and your cousins, Kayla, Ashley, Caleb, and Kieran, bring the count of miracles to six ! 😉 🙂 **
What a great post! It’s full of wonderful news, lots of smiles, and new (to me) Brendan sounds! Yay!!!