2 weeks!!

It's been 2 weeks and we are still doing well. He still has O2, which we will probably have to wait until his pulmonology appointment in order to talk it over w/ the Drs b/c his sats don't stay up above the 94 mark w/out O2. So... ??

His sign language vocabulary has been flourishing. We are still working on basic speech vocabulary.

Grandma and Grandpa C were here and he had lots of fun showing off his new skills. Next week Jason, Megan and the kids will be in town. So he will see all 3 of his cousins again.

Kelly and Jeff brought home Luella last Friday and they are doing well.

Just wanted to give you a quick up date....
take care - thank you all for your thoughts and prayer through this big milestone in his life!!!

Still going...

Ayden is still doing well. It's been over a week and we can't hardly believe it!! He hasn't been on Oxygen most of the night - but about 4:30am he starts beeping, which tells us that needs his oxygen. His trach stoma (hole) has almost closed. But if he keeps blowing air out the stoma (because it sounds like an elephant and makes fun noises), it will continue to stay a little open.

Grandma and Grandpa Connor have come out to visit, so there is lots to do..

thanks for checking in.. It's still hard to believe that he no longer needs the trach.

48+ hrs post decan...

Just a little update to let you know that all is well here at the Connor household. Ayden seems to be doing well. He can be without Oxygen at night and his sats are great, but during the day, he still need some - not as much as before, but just enough to have to continue to drag around oxygen tubing. :( With out the Oxygen tubing, we don't know how we will find him... oh yeah, the lights will be flickering on and off. (for those of you that haven't seen him around lights, he has a little obsession w/ turning them on and off) :~)

There wasn't much instructions... just to have a bandaid over the opening when we go out and about and the ENT wants to follow up in about 3-4 weeks.

Although it was a little bit of a stressful time, it was wonderful watching Ayden transform to even more of a little boy.

We're home!

Well, we were discharged at about 9:30 ish this morning. Ayden's been doing great. He was off O2 all together at the hospital, but he wasn't moving around. When we came home, we tested him and he needed a little boost. They tried him on room air yesterday and he didn't do well, even sitting around, so he is getting stronger. :)

Good morning!!!

We had a good night last, although he woke up and just hung out in the crib from about 1:30-2:30. He was up at about 6:30ish ready to run and play, but we are still hooked up to all the monitors, so we have to wait.

I think he has managed to wake up the entire PICU since he can use his voice when ever he wants now. No more "off" switch... haha

Sleepy time

Ayden fell asleep pretty easy tonight and was pooped out. Which we were told might happen over the next few days while he adjusts to his normal breathing.

I was just thinking that we forgot something tonight.... It felt weird not to have to do "trach care" tonight at bedtime... all we had to do was slap on a diaper and put him to bed... :) We didn't really forget anything - just didn't have to do so much since we are in the hospital and they have to give the meds and stuff.

He is resting very comfortably and cuddled w/ pooh bear. Hope you all had a good day... as you can read, we sure did.

Don't make me sit still any longer!!!

Ayden has been a real trooper, but he's ready to run up and down the hall!! There aren't enough toys in our house to keep him busy, let alone we didn't bring enough for him. Tonight, they allowed him to eat by mouth and we brought some pickles along and boy did he LOVE them. He didn't make the faces he normally does. In addition our friend Michelle brought Chris and I sandwiches and some cheddar sun chips. He loved them too. I had to take both the pickle and chips away b/c I was afraid he was going to stick the whole thing (each individually) in his mouth! :) Hopefully this is a good sign of things to come.

Gotta run - Ayden needs to use the computer to watch a movie. :)
thanks for checking in!!

Naked Neck!!

Just like we were told, it was a quick visit to the operating room. He was only in there for a 1/2 hr max. The ENT came to talk to us and said that the trach is OUT :) and he was doing great. He doesn't expect any bumps in the road and will just let the opening close by itself.

We got a quick peek as he was going into the PICU, but have to wait until he gets "checked in". :)

***Update - Ayden awoke quickly and displayed his classic Irish spirit.... specifically, he was very upset with everything, even Pooh for a few minutes. He is one tired little boy, and decided to get back on schedule with his afternoon nap. He's now resting comfortably in mom's arms, and doing well!

In the OR

Ayden was taken back to the OR right on time. There was no one in day surgery today, so he had 1 nurse all to himself in pre-op and boy did he play it up! One smile and he had her hooked. She loaded him up on some fun stuff like a beach ball that he and dad were throwing around. Got some crayons and coloring book... stickers, sunglasses (which became Pooh Bear's sunglasses). The Drs are pretty hopeful that the trach will come out... so we just have to sit in the waiting area and type away. :) If the trach comes out, he will end up in the PICU where he spent the first 9 months of his life.

We will let you know more later... thanks for checking in!!!

Ayden has a new cousin

For those on Dawn's side of the family who are worried, no Carol isn't a Grandma for the 5th time... so don't worry. This comes on Chris' side - his sister Kelley and her husband Jeff welcomed their first baby into the world this morning. Luella Catherine (sorry I spelled it wrong the first time) came into the world at approximately 9 in the morning, weighing in at 6lb 4oz and was about 20 in long. The report is that everyone is doing well, however, Louella decided to visit about 6 weeks early, so they are monitoring her closely. Hopefully we will get some pics to post soon!!

Counting down...

We are getting close... I was telling Ayden during trach care that in 2 days the trach may be all gone and so he pointed to his trach and signed all done. :) So if he has anything to say about it, it's coming OUT. haha

Mom and Dad are getting nervous... hard to not be excited all at the same time. His visit to the OR will be at 1pm and from there we shall see. I hope that there will be internet access...

Chris has to work a weird schedule - so he is going into work at about 2am on Wed night(Thursday morning) and possibly Friday morning.

Here are a few goofy pics of Ayden from tonight...



Thanks for checking in with us!!!

A kiss for Dakotah

Ayden decided that Dakotah needed some kisses this morning and so here is a pic of his new way to greet Dakotah. I am sure that will change once he gets a kiss back from her across his face. :) Dakotah was great about it and just layed there and let him kiss her about 5 times.

Post #2

Hey everyone... We are at one week from his T-day (trach removal day). He has been doing very well with his capping(where he can't breath in or out of the trach). He is basically capped for about 1/2 the day.

He has also been developing his vocabulary... he says mama, dada, wawa (water), WOW, hi and a bunch of other random sounds. In addition he know and has a about 75 signs, so he can communicate even futher.

His new favorite thing to do is feed the puppies. He tries to scoop the food and all. He doesn't quite get enough food in the scoop - but he tries. :) However, with this new found chore, we have to watch him because he tries to feed them multiple times through out the day, which the dogs think is GREAT... haha He even includes a pat on the back for Dakotah after she starts to eat. We will definitely be reminding him when he is older and complains about having to feed the pups... haha

Sorry that we haven't updated his pics on the website. We have had a few technical difficulties on our end. I hope to post some pics after surgery here on this blog.