Life is so tricky. And interesting. And mysterious. And…
You get the idea.
We learned a lot about this condition after listening to the surgeon for over an hour. (I brought a little recorder, aren’t I a total geek? Why, you ask? Well, not only to be responsible and thorough, but also to prevent the husband/wife post-appointment argument where I say “NO, that’s NOT what he said, he SAID…” and then he says, “Heather, I KNOW he said…” See? Smart wife.)
Anyway, I digress.
The doctor also asked us a lot of questions about Asher’s history and observed his behavior. He believes that Asher’s hydrocephalus is congenital (rather than being caused by an injury, neonatal issue, or as a result of any other problem.)
So most likely, since it’s congenital, it’s all Ryan’s fault.
(Yes, of course I’m kidding! Like I would blame my husband for this. For eating the last of the ice cream, sure. But not for this.)
The doctor also believes that Asher’s mobility issues (he’s been slow to walk, etc.) may also be due to his condition. But he isn’t sure. (It could also be due to the fact that his large noggin throws his balance off a bit.)
The good news continues to be that this was caught before it did any developmental damage. It isn’t common to see hydrocephalus at this age, so we’re so thankful our pediatrician encouraged us to have a catscan.
Yeah, lots and lots of extra spinal fluid in there. So this is where it gets tricky for me, knowing that the more fluid that collects there, the more of a chance the pressure will effect his brain. So everything in me was screaming “DO THE SURGERY RIGHT NOW THIS VERY SECOND OR I’LL FOLLOW YOU AROUND TAPPING YOU ON THE SHOULDER UNTIL YOU DO AND THAT COULD BE REALLY ANNOYING, ESPECIALLY WHILE DOING SURGERIES, MR. SURGEON!!!”
Ryan has to keep reminding me that the neuro-surgeon knows a lot more about brains than I do. I’m sure if he thought it was that urgent, they really would be rushing Asher into surgery. For now it looks like an MRI next Tuesday and a follow-up appointment with the surgeon Thursday. Then the surgery itself will be about a week after that. Sigh…
________
When we got home from the appointment, I was going through some paperwork (a really huge pile) and came across a piece of scrap paper with a list of names on it. I nearly threw it aside, but stopped to look more closely. It was a list of baby names from when I was pregnant with Asher.
Ethan
Alex
Sawyer
But no Asher. (When we came across the name Asher late in my pregnancy all other names were quickly disregarded. Because Asher rocks the party.)
It’s so crazy to think back and know there was a time that we didn’t know his name. We didn’t know what his laugh would sound like or what foods he would love. We didn’t know that he would cry for six months straight from tummy pain, or that he’d develop hydrocephalus and need surgery and frequent check-ups for the rest of his life.
But as the days pass, and we learn more about this once unknown little guy, it doesn’t matter what crosses our sometimes mysterious and tricky path. Because we’re falling more and more in love with Asher, just as he is. He’s already had a lot of bumps in his short road, but he’s still full of joy. He’s a trooper, indeed.
{ 36 comments }
I’m glad that this was caught early! He’s a beautiful little boy, with amazing parents.
great news ..
will the shunt be internal or external (do they still do external) ? Waiting while you remind the tape …
still, we are tickled the news was this good. He (and y’all) are still in our prayers
What a smart idea, to bring a tape recorder. I’m so glad Asher has such awesome parents who are willing to do anything to help him.
And yes, you are right, Asher is a great name. We made lists like that too, and didn’t use the names either!
Ron-
The shunts are internal these days. There is a procedure the doc will consider where they make a hole between two venrticles for draining rather than using a shunt. But that one has less success…
so we’ll see.
He is just so special! Isn’t it interesting to think that our children haven’t been with us forever? I’m sure we knew them before we came to earth, but to spend the first 20 some odd years here without them and then have them, makes it feel like you’ve always known each other. I’m with you on the telling the surgeon to do the surgery NOW. Why do they always make you wait on something you feel is so urgent? Good luck. Hugs to you.
I love the tape recorder strategy. That argument ALWAYS happens. And I totally agree with the happy congenital diagnosis… it’s so much more guilt-free. Right before my 3rd was born we found out that my oldest had a cholosteatoma (dare you to look it up) and needed surgery. I felt a weird sense of relief to know it was congenital and not caused by my neglect of earlier illnesses. Your Asher is darling and I actually liked that name quite a bit for one of my own, but my husband vetoed it. Doesn’t it mean happy?
I’m glad to hear that you are getting answers and dates for treatment. I don’t blame you at all for taking the tape recorder. Those meetings are always high-stress and you’ll forget stuff easily. Smart Mom indeed.
The tape recorder is a brilliant idea. It’s always emotional inside of a doctor’s office during a visit like that… makes it hard to remember the details. Continuing to pray for y’all and wait for more info…
So cute that picture, and Asher definitely rocks the party!
Glad to get an update. I was thinking of you today. I would say it is good news that the doc doesn’t seem in a huge rush. Best best best of luck.
Thanks for the update. I’ve been wondering how things went today.
That was very smart of you to record the conversation with the neurosurgeon. I’m going to tuck that idea away for future reference. Was the surgeon at all hesitant about you doing that? I’m thinking my mom would benefit from doing that in her appointments, but I’m not sure her hematologist would let her.
The waiting is the hardest part, isn’t it? I don’t blame you for wanting it to be done right now!
Peanut,
Good question!
The paperwork we got before the appt. actually encouraged bringing the recorder. The doc was cool about it. He joked about how I couldn’t use it in court, but his personality is very laid back. He said years ago they wouldn’t allow people to do that, but now the court doesn’t even allow them as evidence. Interesting.
You warm my heart and make me laugh at the same time. I think Asher and his mom both rock the party!
I’m still in awe of your smarts! Bringing a tape recorder? Genius. I’ve been praying for you guys. I haven’t been commenting a lot, because words don’t come easy for me sometimes. I live in a feelings world, not wordy.
I agree with Mary you and Asher rock the party. OOOWA OOOWA!
I’d be a tapper, too! :)
It sounds like the appointment went really well; I hope the next couple weeks are smooth sailing.
I am so happy things are looking good. I’m totally stealing the tape recorder idea, should the need ever arise. My husband and I are champion bickerers about whatever the doctor said. :)
I love the name Asher.
It’s not just his name that rocks the party. That little dude looks like he would rock the party even if his name was Melvin.
But the Asher thing helps him be even more rockin’.
He looks to be an absolute doll!!
As a Nana ~ I just want to kiss his cute little cheeks.
God Bless your Journey!
Cindy
Beautiful boy. Beautiful name. Beautiful family.
I completely understand the feeling of wanting to fix thing NOW. I would feel the same way.
Part of me is so sorry you all have to go through this but part of me is glad, too, because these kinds of things make or break us–and you are the kind of person who deserves to be made. And in the end, he will be just fine and happy and cute as a button like he is now. :)
The tape recorder thing (so smart.) I’m going to totally steal it, mind you, for me it is because I am deaf and dr.’s scare me just a little so when they say something and I don’t catch it I pretend that I do.
Not always in the best interest of my kid’s health.
Glad the surgery is soon and that it was caught before it did nay damage.
I think the tape recorder is GENIUS!
Oh he is so cute. I am praying for your family.
He doesn’t look anything like those names. I love how kiddos LOOK like their names.
So glad to see you got schooled today, medically speaking of course. I was definitely thinking of you!
Love that closing picture of him, his eyes are aquatic marbles!
I’ve been oddly absent from the blogging world this week — but your blog, I’ve been checking every day. I’m so glad to hear the appointment went well, and I’m even more glad you resisted the urge to poke the surgeon in the shoulder and follow him around. Not good for the doctor-patient relationship, if you know what I mean.
I’ll keep praying.
I love how you can take your worry and turn it into something beautiful and inspiring like this post.
Continued prayers for Asher–and he is ADORABLE!!
An extremely CUTE little trooper!
I love the reflections on before you knew him. That is the wonder of parenthood. There’s a whole personality. An entire life about to happen!
Glad you at least have a timetable now with all of this. So glad everything is being taken care of. And that you’re sharing it with us.
Bringing an audio recorder to the doctor’s office is brilliant. It’s so emotional in there sometimes you miss a lot of things or only hear things you want to hear. That is so wonderful that Asher’s condition was caught early before any damage. But I know it still must be very difficult for you as a Mom. Hang in there.
I don’t know how old Asher is, but Jakob didn’t walk until he was 17 months. I don’t know if there is any underlying medical conditions–since Asher’s could definitely be a reason–Jakob has been late with pretty much all of his milestones. I know as a parent you worry excessively about everything. And then you feel stressed to the hilt and miss out the true things that we want to see because we are so dang worried. Been there–still doing that. I know you can’t just stop worrying–but know that all of these people on this blog (including me) are praying for all of you so things can feel a little easier. Many blessings! JODI
hooray for Asher! And for your MD who got the ball rolling.
If I ever birth a boy I may steal the name Sawyer.
I may start bringing a tape recorder everywhere with me.
And stinking cute to boot!
Heather, you and your family are in my prayers.
I’m glad you have some answers, finally. I’ve told you before, Asher was made for your family. You all fit together perfectly.
He’s a cutie pie.
Thank you for sharing this post. I am thinking good thoughts for your family.
And I was cracking up imagining you tapping him on the surgery to get him to do the surgery faster. I would do the same thing!
What a lover-boy! And what a miracle that it was caught early!!
Praying for you, Heather!
I am so glad this was caught so early. And the tape recorder. Very smart.
Praying for you.
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