Apollo had his check up with his pulmonologist at Seattle Children’s Hospital yesterday. Dr R is our favorite doctor at Children’s. He has been the one from the beginning who listened to us, who values our opinion and considers us experts on Apollo (not all doctors do). He has advocated for Apollo and he encouraged us to take Apollo out-of-state (sooner rather than later) to have his second double aortic arch division done. He has been Apollo’s champion for the past four years.
Apollo’s breathing has been better this past year than it has ever been. His trachea is growing and healing and now that his tonsils are out, he is able to eat and grow. He is sleeping better (though still not all night, and he won’t go to bed alone).
Yesterday Apollo hit another milestone on his medical journey…he had his first ever lung function test. The doctors have just been waiting for him to be old enough to follow directions. He did well…for his first time. Unfortunately he is still learning, so the results were considered inaccurate. Crazy that they didn’t have me working with him and practicing at home…but the doctor encouraged us to do that in the future. The good news? His peak flow is within the range of normal! Can you imagine who miraculous it feels to be told anything with Apollo’s airway is “within the range of normal”? His exhalation was too short, but they couldn’t measure his actual ability (hence the need to practice).
Apollo was not happy about the long wait between his lung function test. LeapPad for the win!
Apollo gets his blood pressure taken in both arms to make sure his patched left subclavian artery is still doing its job.
Dr. R examined Apollo and gave us the best news we’ve ever had. His breathing sounds great, his weight is great and Dr. R was thrilled with his progress. He asked about school and warned us about all the nasty germs it entails. I told him his siblings had been going to school the last few years and he was happy about that as preliminary exposure. He asked if we were still using the feeding tube, and I told him he has it but we hadn’t used it in a few weeks.
“Good!” he said. “Get rid of that plastic in his stomach and no one will ever know he was ever anything but a scrawny kid. Bring him back next year and if he’s still doing well we may just have to put him out to pasture and make room here for some sick kids”.
I cannot tell you how much joy it brings me to suggest that in a year he may not be considered a “sick kid”?
Apollo still has issues. He tires easily, he has extreme anxiety and eating is still a chore. And on that note…I have registered him for Kindergarten at the local elementary school his siblings attend. Yes, I could homeschool him. Of course, I could, but I don’t believe that is what is best for him right now. I will save the details for another post.
- edited to add: we aren’t pulling the feeding tube yet, but we are working in that direction.
If you are new here, you may want to read Apollo’s Story to get caught up.
I share your joy in hearing “make room for the sick kids.” Such an intense journey. So very happy for this news!
Such HUGE blessings and good news! Praying he continues to heal each and every day!! Caan’t believe how old he looks with his new haircut! 😉
Oh, I am so glad to hear this
School will be good for him to leap some of those hurdles anxiety can cause and give him some good learning time away and outside his comfort zone.
Yay!!! Such good news! Congrats Mama and congrats Apollo!
Oh my goodness, so much good news here! Eating, breathing all going well. Hooray!!!
Wonderful news! So happy for all of you. Apollo looks great!
We kept Owen’s tube in for months after we stopped using it. It turned out to be a good thing since he had to use it again after the really bad seizure. I’d leave it in awhile in case he does get sick. It is so great to think that he could be done with all this in a year though!
We have no plans to actually ditch it yet, not after what we’ve been through! And we are still using it occasionally.
Oh, he has grown! The haircut! Wow. He’s really not a little kid. That lung function test: the scariest thing is the noise, and the way that tube makes that thumping clunking noise–I’ve had ’em, I get ’em for asthma. The sound of the dang thing is enough to make you want to stop breathing . . .
I am so thrilled for you guys! That snazzy looking haircut makes him look so grown up. I love being a little bit different and my kids are all a bit weird…..but whenever a doctor uses the words “withing normal range” with Kaylee I do a little happy dance inside 🙂
I’m so very happy to read this good news! You have been an amazing, unselfish, sacrificial caregiver for Apollo; and I am sure the journey has been harder than any of us readers can ever realize. But wow, look at the results. Fantastic!!!
That picture of Apollo with the doctor reminds me of a Norman Rockwell painting. I love the way Apollo is looking at the doctor. Also, I may be partial to old men doctors who really care about their patients because my granddad was one, as well as my dad and my uncle. Hooray for the personal side of modern medicine! 🙂
That’s amazing news!! Yeah! Praise God!!!!
I’m so interested to hear about Apollo going to public school. I know the initial reason you enrolled some of your children was because you were So busy with his appointments. It’s really interesting to me that he will also go to public school as I know it was your initial plan to homeschool all your children if it had worked out. I’m interested to see if it’s basically because his siblings are there and he would be the only one left at home.
Sweet. Answers to prayer. Prayers continue for you all though.
Wonderful news! He looks so grown up.
Oh my goodness! That’s probably the first time I read the words “put him out to pasture” and did the happy squeal ;D
So thankful for all the progress!
Yay for Apollo! So glad he’s doing well.
I cried tears of joy reading this!
What good news!
And oh, he had a hair cur :-).