Speech therapy

We get every other therapy- occupational therapy, physical therapy.... But we keep striking out with speech therapy!
In addition to the frustration of having a child who is.... Let's call it temperamental? Yes. Having a child that is temperamental about eating orally in the first place, I also have to deal with the fact that the clinic we go to for every other therapy can't seem to get him on speech therapy because of insurance.
So we went to the clinic at Baylor on Dallas.
4 1/2 hours later, we're no better or wiser as to what to do in order to get Evan to eat.

And you know, I'm not even THAT frustrated about that aspect.
What I am frustrated with is the therapists remarking not once, but twice how "different" he was.

Yep. Believe it or not, but after 8 months in the hospital, and almost 3 months home working my butt off trying to get him where he is at currently, I am aware my son is different from other babies his age. I don't need a running commentary.
I'm sorry that it is surprising to you, even though you are working in a profession that SPECIFICALLY deals with "different" children. Heck, I even was required to fill out 20 pages of questions regarding his differences a month prior to this appointment.

Let's put that aside, and discuss how you stating how different he is made me feel. Obviously, it irked me, because I've been dwelling on it for the past 5 hours.
But beyond that, it instantly makes me worry that somehow MY son is so much different from your usual "different" children that you feel the need to remark on it twice.
I resent that worry.
I have enough on my plate. I don't need to worry unnecessarily.
If you have a major concern about something I haven't already mentioned about his myriad of conditions and delays, please say it clearly.
If you have an ill-defined hunch that something is wrong beyond what I know, please feel free to examine him further, ask questions, etc. If you fail to confirm any suspicions, keep that vague hunch to yourself until we know more. But don't just spout off a general "he's different" with no further explanation.

Whew. Good to have that off my chest.

So, after all that.... Evan's doing fabulous. :-)

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.