Just some thoughts

If you're looking for more adventure in your life.... Have a kid.
Children are small, demented little maniacs that seem willing to try anything and everything they possibly can.... Preferably within a two hour time span. And just when you think that they're inexhaustible.... They fall asleep, and sleep with the same utter abandon that dominated their day.
Nothing is more precious than seeing this little, pure person in all their glory.

And the best part is that every little adventure, every new experience is new for you as well. Because part of their experience is sharing it with you.

Being a parent is literally the most awesome adventure of my life.

Evan applies HIS rules to our world

This was just so precious, I had to share.
I was sitting with Evan on the floor, and he was discovering all he could about the suction tube and catheter.
Without any warning, he held the suction catheter up to my throat, and started laughing.
I was startled. Is he trying to mimic us when we suction him?
So I drew back and asked him "are you suctioning me?" and leaned forward. Immediately, he brought the suction back up in the direction of my throat and laughed again.
We did this several times, much to Evan's delight.
I just loved seeing this cognitive leap.

I'm also seeing big steps in his physical therapy, and occupational therapy.
Evan has been sitting unassisted for 30 minutes at a time. He also is reaching for, grabbing, and bringing toys to him while sitting. We're seeing super fast rolling over. He's trying to get his legs under him to crawl. He's more interested with the idea that he can move himself to get things he wants.

All this activity before his 1st birthday is incredibly heartening for me.

Just a week and a couple of days to go until we try to be rid of the trach!

Upper respiratory infection

It's never simple, is it?

Friday, I was thrilled to pieces after our doctor's appointment, because we set a date to do a bronchoscopy....and if everything looks good, remove the trach! It's July 2nd. I was over the moon.

Saturday rolls around, and I had been having to suction Evan more often. He started getting these red, itchy, watery eyes, was sneezing like crazy, and was having a little more trouble keeping his saturation level up.... But I wasn't too worried, because he seemed to feel a little better as the went on.
Oooohhh, but that night.
He woke up so often, coughing. I gave him an extra breathing treatment to see if that would help, but two hours later, he was back to coughing in a wheezy way. The poor guy was just exhausted Sunday, because he hadn't gotten very good rest.
He was needing much more oxygen than usual to maintain his saturation levels, and his heart rate was elevated. My poor baby was sick.
I called the pulmonologist, and told her that it looked for all the world like allergies to me... I mean, itchy, watery eyes, sneezing, etc, that's what you'd think, right?
She gave us the go-ahead to use children's Benadryl. Afterwards, Evan fell into a deep sleep, which he needed so much. After a few hours, he woke up with the same problems. Extra breathing treatments were given to ease his wheezy coughing.
When we could, we gave him another dose of the Benadryl.
In the meantime, Evan started having diarrhea.
The Benadryl didn't work to make him better. He was running a fever, so I switched to using Tylenol that evening to help ease the fever. No more Benadryl after that.
And we had another night of Evan barely getting any decent rest.
Monday- Evan's fever had lessened, but his coughing was worse, he was pale, and he was still having diarrhea. I thought to myself "okay, it's time to call the doctor". And I did as soon as their office opened.
I made an appointment for that afternoon (that was the soonest they could see us), and we hunkered down for a hard morning. I learned that his coughing was better when he for breathing treatments roughly every 2 hours, so I continued with that. But he was so fussy, and clingy, wanting to be held and to sleep.
Finally, it was time to go.
We loaded up, and I hoped SUPER-SIZED hopes that he would ride well on the way. Otherwise, I was going to have to pull over every so often in order to suction or comfort him.
Thank goodness, he did great.
We got to the pediatrician, they examined him, sent him for a chest X-ray to check for pneumonia, and then we headed home, just waiting on the call. Thank goodness it wasn't pneumonia. His theory was that it was an upper respiratory infection.
The pediatrician had called in some medications for us- and corticosteroid and an antibiotic.
The extra breathing treatments were helping. Evan was sooo tired though. We got his bath done that night, and the corticosteroid seemed to work some magic, because he was a little better with the cough. His fever did spike, and I gave him more Tylenol. After that, he slept like he was going to sleep for years. He still woke up frequently, but the coughing wasnt near as bad, and the diarrhea eased up somewhat.

Tuesday- he smiled at me again. There was no fever, and he didn't sound too wheezy. I gave him his meds through the day, breathing treatments, but we were able to play a little. Mostly, though, he wanted to sleep. So we snuggled a lot.
By evening, he was almost back to his old self.

So that brings us to today. My little guy enjoyed a day filled with activities that we normally do daily, but have missed out lately. He sat up on his own for long periods of time (even showed off by reaching for things with both hands), and we talked and sang and played.

I'm so happy he's feeling better.

Now, let's hope this doesn't affect the date we're supposed to try and get rid of the trach.

So, golly, WHEN is he getting rid of the trach?

Ah, the question on everyone's mind is- When is Evan going to be off the trach?

That's the question foremost on my mind today, because we'll be going to see his pulmonalogist in a few hours.
We've been working steadily to get him off the oxygen (still not quite there) and have him on his speaking valve more often (the word frustration doesn't even cover THAT).
He can be off the oxygen for hours and be fine. Other days, he needs that tiny bit to help him out.
The speaking valve has been the hardest- he does so great some days, but others.... Well, he might as well have NOT HAVING IT stamped on his forehead.
I truly believe that he will do fine without the trach.
But I have a biased opinion because the sooner that thing is gone, the sooner we can try to live a little closer to "normal". And boy, do I want "normal"!

So many problems and frustrations stem from the trach- secretions causing him to cough, coughing up more secretions, causing him to gag, gagging causing him to retch, and retching causing him to spew his food all over. Which means, I'm usually smelling like half-digested formula, he's always got a hint of it as well, and I change his clothes 3 times a day, and mine at least 2 times. Not to mention the burp cloths, covers, sheets, pillows, etc that need washing afterward. As it stands now, I'm doing 4 loads of laundry every 2-3 days.
And poor Evan, he gets so upset when he coughs and gags. I bet I spend at least 2 hours total every day just suctioning his trach , 1 hour total changing his clothes, changing mine, cleaning him up, and cleaning the spots we didn't catch the puke in time, and 1 1/2 hours comforting him when he's upset about it all.
That's not to mention the time taken for his trach care in the morning, trach tie changes and care in the evening, and trach changes every week. And the time I spend moving his equipment from his room upstairs to the living area downstairs, and back up again, or loading him into the car and unloading him! That's easily an hour of moving stuff and loading/unloading if we have an appointment somewhere (which is why I NEVER schedule two appointments in one day)
It's no wonder I never have enough time to take care of much of anything else.

So now that I've gotten that off my chest, let me just say that Evan's physical therapy is going great- things clicked for him a while back, and he's sitting on his own for 10 minutes at a time, grabbing and reaching, rolling over and pushing up while he's on his belly. He's also been trying to figure out how to scoot backward on his bottom while he's sitting. Very cool.

Despite any frustrations I feel, I love being home with Evan and getting to see everything, good and bad. I can't get over the feeling that I am the luckiest Momma on the planet, because my son is so amazing.

Sometimes you gotta just go with it

There are days I am amazed at Evan's progress. And then there are others that not only do we see no progress, it's like we took a step back.
I suppose this is typical for any baby/ toddler. It just seems amplified in our situation because progress is so important for Evan.

Having him home is a wonder. At the end of the day (especially the more frustrating days), I still realize he's made a ton of progress in the almost 2 months we've been home. And the time has just flown by.

Still, it's sometimes hard to keep pushing and pushing every day for progress. It wears us all down.
I sometimes take a moment to sit back and contemplate what I very rarely allow myself to think about: what a "normal" 9-10 month old would be doing now.
It's a tough exercise. I immerse myself so much in our daily routines and goals that I sometimes forget where we WOULD have been at this stage, without the multiple complications to Evan's development.
Still, it's necessary to think about it, because it sets the bar higher and higher as we manage to make progress.
He's sitting up well, and grabbing toys, but we still have trouble with him trying sit on his own without propping up on his hands or something else.
He's rolling, and pushing up on his arms, even trying to rock when I set him into a crawling position. But he's still easily frustrated with it.
He eats a few spoonfuls some days like champ, enjoying his baby food and making huge strides. Other days, he vomits it back up, or flat out refuses to eat anything.
There are days that he is on the speaking valve for hours (spaced out through the day) with few issues, and others it's a struggle to have him on for 40 minutes total, even trying 3 times in a day.
I do my best to recognize his cues, to find some sort of reason why he's more tolerant some days, while others are more complicated. I track the amount of time and quality of his sleep, his feeds, all activities, playtime, diapers, temperatures morning and evening, baths, time spent on the speaking valve, or trying to eat, physical therapy, etc on an app for my phone- and I am meticulous in using it. I note changes in behavior, when I suspect a tooth to be coming in, how he reacts to things..... Everything I can think of to make it easier to identify what sort of routine works best in order to make progress steadily.

And at the end of the hardest days, I'm left with one conclusion: Sometimes you just gotta go with it.
I can't compare Evan's progress with the typical 9-10 month old. He isn't. And it's not fair to him or myself to try. Evan has his own way of doing things. He's a force unto himself. With all the progress he's made over all this time, I only take credit for 25% of it. Because he does best when you show him something, some exercise or action, and allow him to initiate it after that on his own. I can keep trying and trying to gently force progress, or I can go with the flow, and let him tell me when he's ready to try something new.
It seems like a simple thing. I guess sometimes, it's hard to see the simple things, when everything has been so complicated for so long.

Progress report

Evan is doing great- physical therapy is going well... He's even starting to enjoy playing on his tummy and getting to get up on his hands and knees (with Mommas help, of course). Today he did a double roll all on his own (back to belly, then belly to back), and then pushed up to look around while he was on his belly. He had a good time with it.

He's taking some food by mouth, but still fighting me on it on some days. We just keep trying. We've been trying 2-3 meals a day, and usually he will take about 3 spoonfuls every meal. And we've been doing most feedings while he has his speaking valve on so he can taste better. He seems to really enjoy sweet potatoes, bananas and applesauce. Come to think of it, I like them too!

Grabby hands

I love that Evan has progressed enough to want to grab anything in his sight and play with it. Really I am.
I tell myself this at least 20 times a day, because otherwise I might be pulling my hair out.
It's not such a problem when you've got a baby with no tubes attached to them. You can make sure whatever is within their reach is baby safe. And barring that, you grab the not so baby safe stuff and hurl it across the room to get it out of their reach.

BUT.... In Evan's case, we've got a feeding tube and oxygen attached to him. Both of these things are wonderful play toys to him, and he just about gives me fits when he gets a death grip on his feeding tube and pulls upward, causing the g-button tube that is supposed to be inside to become exposed. Now, the g-button has a balloon keeping it placed in his stomach, but I still freak a little when he does this, since both his stomach and skin are fairly elastic, and I have images of it popping out dancing in my head.

It's not that it's a major emergency if this happens. But I still worry about it. I also worry about him getting a good grip on the trach and pulling it out just enough slip out. The trach ties make this less of a possibility, though, and I'm familiar and comfortable enough with the trach that I don't worry about that as much. Just 10 times a day, as opposed to the 20 times a day I worry about the g-button coming out.

I love being a mother, and having all these things to worry about on top of the usual motherly worries doesn't change that fact. It doesn't matter how grabby those sweet little hands get, or how fussy he is over teething. Or that he decides to throw a party in his room three nights a week from 2 AM to 3:30, and then naps in short 30 minute bursts the next day so that there is no way I can nap with him.

Nope, all that is A-okay with me, because I get to do all the cool, fun stuff with him, like seeing him discover his feet, and find out that he can make popping sounds with his lips. I get to see him smile so many times in a day, and see all that progress that we've worked so hard for.
He's amazing, and I am so lucky to be his Momma.