1/27/09

Asher Update and some questions answered

Posted on Tuesday~January 27th, 2009
Asher with his "My Mom Rocks" custom made pacifier, courtesy of the lovely Charrette.
(That lady totally rocks.)
______________
It's been almost two months since Asher's surgery! Thank you for continuing to ask how he's doing. I don't find it intrusive at all. We appreciate that our bloggy and real-life friends think of us.

(If you're new here, you can click on The Noggin under the labels in the left sidebar to learn more. Asher has hydrocephalus, a condition where fluid doesn't drain properly from the brain to the spinal cord. He had a brain shunt put in recently.)

At his appointment last week, the only "concern" was his language development. He's falling a little behind there, but then again many kids do. When he's six and talking our ears off, I'm sure we'll think it was silly to have worried.
So we're choosing not to worry.

Now that Asher has recovered and we're finding our groove of "normalcy," I'm finally posting some pictures, knowing that one day I'll wish I had these memories documented. It's hard to look at them right now, but at the same time, they are a great reminder of the grace and peace we experienced around and during the surgery.


My parents with Asher right before the surgery.



Right after the surgery.



In the much despised hospital bed.



Asher thanks God for a successful surgery.
(okay, okay, he was just reaching for a mobile, but he is VERY spiritual.)



Asher loved leaving his room,
so we wagoned the halls quite often.



He wants out.


And he thanks YOU for all your support!


And so do I.


I'd also like to take this opportunity to answer a couple of questions. People often ask if Asher's shunt is permanent. Yes, it is. He will always have it. (It's very rare for the ventricles to correct themselves, but it is slightly possible.) He'll have to have surgery about every five years for shunt replacement. You know, like an update. Sometimes things go wrong before that amount of time, but it's usually about five years and will be done through his lifetime. He'll have catscans every six months at first, and after that I'm not sure how often. When he's older, I'm assuming it won't be that often, especially if there have been no problems.

The only way we can know if something isn't working right is by how Asher is acting. If he gets out of sorts, lethargic or (excuse me) pukes, then we know something is wrong and take him in right away. (I don't know how we decipher if the puking means the flu or a shunt problem.) Other than that, Asher can have a normal life. The neurosurgeon said it's up to us to decide about sports, even saying he could play football if we're comfortable with it. He would need a special helmet with a space cut out in the foam for his shunt :) But he can knock his head just like any other boy, it just would be extra bad if he ever had a concussion. Let's just say that if he does fall in love with football, I'll probably pass out.


I mentioned this last question in another post, but another concern people have in general is if Asher's development will be normal. I believe it will. I believe that his condition was caught before any brain damage occurred. We're so thankful. He's a bright boy, follows directions, and engages in appropriate play and behavior for his age. He doesn't have a lot of words yet, but they're coming. Like I said, we're not going to worry. He seems just fine in every other way, so we'll just wait for the toddler incessant talking to begin soon. And we'll be thankful for it.


If you have any other questions, please ask in the comments or email me. I'd love to be a help to anyone going through this, or to help people understand it so they can support people in this situation. You can read more about hydrocephalus HERE.

Your thoughts and prayers pulled us through some difficult days.
So I have to say thank you once again, wishing there were words for how much we appreciate you. So many people had their friends and family that don't even know us praying for Asher. No, there aren't enough words in any language to say what that means.

THANK YOU.

49 clicked right here to comment:

Kim said...

I am so glad to hear about his recovery. He is a trooper, as are his Mama and Daddy, and of course sweet little Miles.
You all remain in my thoughts and prayers. If you want to talk about language development, email me. I have a few resources ;)

Sarah said...

I'm glad he's doing well. Those pictures are heartbreaking in some ways, but also heartwarming now that you know he's doing well.

Melissa said...

I am so happy for your family!

I enjoyed reading a little of your story. It seems to put everything in my own life into perspective.

Thank you for another soul-enlightening post!

I'll be praying for Asher's health, and that he doesn't fall in love with football. Yikes!

Rachel said...

As you know I've had my own heartbreak concerning my daughter, but as I read about Asher, I shed a few more tears knowing that his health and well-being will be something you're constantly worrying about. Obviously God's there too, but as moms, worry for our kids is sooo hard to just give to God (and not take back. . . repeatedly). I praise God that Asher is doing well (he's such a pumpkin!) and I'll be praying for his continued health. I'll also pray for you and Ryan also, we all have to trust our children to God, regardless of the outcome.

Steph @ Diapers and Divinity said...

That wagon picture in the hospital halls brings back vivid memories of our PICU days with Grant. So glad things are on the upswing now. He is lucky to have a mom as caring, determined and faithful as you.

Willow Tree said...

I was scrolling down slowly as I read; when I came to the pointing to the mobile picture I took it in before the caption came up and thought the Same Thing - That He Knows. I firmly believe children see angels, and I know Asher had a whole camp of them there - STILL DOES. You rock the party Heather - you're hands down one of the strongest women I know.

Blessings, Carolynn

Octamom said...

So glad you took the pictures--and so glad you shared them. So, so thankful his recovery continues to go well and that his development is on target--what a gorgeous little guy!

Blessings!

Brooke said...

I'm so glad to hear that he's doing so well. I love the pictures. He is such a cutie pie. You're a great mom. YOU ROCK!

minnesotamom said...

I, too, am glad to hear that baby of yours is doing well! And I'm sure his words will catch up, too--not something to worry about. After all, God has it all under control, so why should we? Easier for me to say being on this side of things, but I hope that He continues to give you peace!

Keyona said...

I've been wondering and am glad to hear he is doing well.

Go Asher!

Annette Lyon said...

Those pictures just make my mommy heart ache. I'm so glad that part is in the past and that he's doing well now.

Heidi Ashworth said...

That picture of him in the red wagon is just adorable! How cute! He is so adult seeming, in a way. And your mom is beautiful!

Rachel said...

So glad to hear Asher is doing well! Seth just had his 2 yr. appt. last week...he is behind in language development too. The doc says she really won't refer patients to speech therapy until kids are closer to three...unless the parents want to persue it sooner. Like you guys, my hubby and I have decided not to worry at this point...there's a wide range of what "normal" is at this point in their lives! I'm glad things have calmed down for you all!

Tooj said...

This is wonderful news. Thank you for sharing. I always wonder how things are, but I don't ever like to pry. I don't know if bloggyland ever gets us close enough to do that, so I wait. :) Those pictures of him in the hospital put so many things into perspective. So Thank YOU.

MidnightCafe said...

Aaaawww, Asher is such a sweetie! I have always experienced him as engaging & bright. Now he really knocks my socks off whenever I see him. He has such a dynamite personality!!

MoziEsmé said...

He looks like such a sweetie - and those photos make your whole experience much more real in my mind. I'm so glad he's recovered okay!

Debbie said...

I was actually wondering just yesterday if his headaches appear to be all gone? I sure hope so.

sara said...

my middle son was born with several different birth defects. One being a significant hole in his heart. He had several other surgeries early on, not on his heart, but to repair other problems. He has been followed every year and now every 2 years. He's 17 and doing great. He has played every sport...even football..and yes, I almost passed out, but he loved it. He's an amazing kid!!!

Looks like Asher is pretty amazing too!!!

Jenny said...

Asher is the bomb. What a trooper he and his mama are.

Thanks for the update. I had many of those questions swirling around in my head.

Ron said...

wonderful to hear how well he is doing .. it is easy to stand on this side and say, "I knew it all along."

The truth is that in spite of how much we believe, how much we trust, and how much we want to convince ourselves that we know, we really don't. Now .. here .. on this side .. our faith validated .. our trust vindicated .. our belief bolstered .. now .. we know.

It is good to know!

The Three 22nds said...

Yeah, thank you for the update!

Lincoln too is very delayed in speech. He knows exactly what is going on at all times, both his brothers were very slow to speak and his hearing tested out ok. So I am just trying to give him time.

I wouldn't sweat it too much at this age. They are up against all those overachiever little girls, after all :)

the MomBabe said...

I'm so glad that they caught it when they did. He's a beautiful little boy and we need to keep him that way.

Rebecca said...

I'm so glad that you caught it early. Those pictures-especially the one of him in the red wagon- *sniff, sniff*

I hope and pray all continues to go well for him and your family.

Kate Coveny Hood said...

Those pictures with the bandages are so precious in a heartbreaking kind of way.

He's just an angel.

I already knew some of this information from previous posts, but I appreciated hearing it again. What an amazing little boy!

Kazzy said...

Cute boy and cute family. I am glad to read an update. Seems like although it will be a life-long thing to live with that you will get used to what to expect and allow. You guys are doing great things!

Elizabeth said...

I loved your comments under each picture of Asher. You know he was praising Jesus in that one!

I am so glad he is doing well, and someday he is going think his shunt is really cool. He'll brag about it to all his friends. And I believe he will choose a sport like swimming. Fun and competitive, but not dangerous! My husband was a swimmer.

I'm curious-are you signing with him? It's always worked great for us.

♥georgie♥ said...

he is sooooooo adorable....glad things are going well for him

Abra said...

So good Heather! Glad everything is working out the way it's supposed to thus far! Hugs to you!

Peanut said...

Thanks for the update and the pictures. Though heartbreaking, they tell the story of what you guys went through well. I can I only imagine how hard those days were for you... we had the easy job in supporting you with prayer. He's a precious little boy. Loved by many, as are you :)

Jessica said...

Praise God that he is doing so well. That little guy is PRECIOUS! You're a good mama.

Wendi @ Every Day Miracles said...

Do you know how much I wish we could sit down with a cup o coffee and chat it up for a few hours?? Do you even drink coffee?? Maybe tea or hot chocolate. :) Coke?
Anyway - we could talk shunts. Not something you can relate about every day. :)
K has only had to have one shunt update in the 6 years he's had his. It was a little bit scary when his malfunctioned, but we caught it fairly early.
Our pediatrician and local ER know us well and gladly accept us in there doors every time K is extra sleepy, or puking, or just seems off. Fortunately most times it's just some thing normal. But we always err on the side of caution. Because the truth is you just DON'T know.
So yeah, I just wrote a post in your comments section.
Glad for the update on Asher. Those pictures are adorable - as sad as it is. I have been glad to have pictures of K's surgeries, even though at first I wondered if I would want them or not.

Sabrina said...

I love the pic of asher raising his arm up... Hallalujah, Praise the Lord! Im healed!
It made me laugh.
Im so glad he is doing better!
God is good!

Sara@I.Sass said...

Those pictures were great! He sure is a sweet boy! I like the wagon ride! Why don't they make wagon for adults, that the kids could pull? They have all the energy. I'm just saying...
Thanks for answering questions too. It is nice to have information about something I know nothing about. I heard of this cupcake place over off 280 Cup-cake...you interseted??

Kelline said...

Wow! You are an amazingly strong women and I admire that quality! The faith you put forth is incredible.

radioactive girl said...

I think I told you about the little girl I taught when I taught Kindergarten. She had a shunt and was a perfectly normal adorable little girl. She did miss school for a little bit to have surgery because she grew and her shunt wasn't working properly, but otherwise, you would never have even known.

I am happy to read the update and see the pictures. And I am happy everyone is doing well now!

2nd Cup of Coffee said...

Bless all of your hearts. May Asher grow into a fine young man of God who testifies to the love of God as expressed through his great parents.

Melanie J said...

I still think of how you explained about how things came together so that you guys were even able to catch this (with the CAT scans scheduling mix ups and all). I think that's such a good lesson in learning that God has a hand in our lives even when we don't see it. I'm so glad that all is well.

Lisa @ Crazy Adventures in Parenting said...

You know something? I began to feel uber guilty for not having asked some of those questions myself. Mainly because I hadn't even considered the shunt would stay in all his life(!), so I hadn't considered sports or anything. But I know why I hadn't asked if he was going to be ok, because *I just know*. I can't explain how, or why, I just do. I can just literally feel that he's going to do absolutely fine. I wish I could share that feeling in my chest with you, because I am certain you're still worried, as a momma should be when something goes wrong. But he's going to be fine. There might be a hiccup or two, but he's gonna be fine. I know it.

About the speech/talking delay, my 8-year-old daughter was also delayed (due to hearing loss) and she won't stop talking now lol. It took a bit to get her up to where she had to be, but she's been out of speech therapy for 2 years.

*Hugs* to you, thank you for sharing those pictures. He is beautiful, and squishily kissable, isn't he? :)

Megan@SortaCrunchy said...

Thanks for sharing so freely about this. I know it surely ministers to other parents who are also going through trials they never expected to face with their children. You are truly a testament to God's life-giving, soul-restoring grace.

LisAway said...

I'm so glad he is doing so well and that you have such a positive attitude.

I totally hear you about the language. Aaron is just starting to say words. It's SO exciting. It's still coming pretty slowly, but he's awesome and there's no question that he's a smarty. Who cares if his sister was speaking in complete sentences and cracking jokes at his age! :)

a Tonggu Momma said...

Heather, I cannot imagine. I just can't. But I do know what it's like to worry and wonder about your child's development. And you are right to set it aside and just let him "be." Watch... wait... observe... and let the rest of it go. Huge hugs to you. And thank you for allowing us a glimpse.

Blessed said...

I've been wondering how your little guy is doing so thank you for the update! I'm so glad to hear that everything is going well.

Jackie @ Our Moments Our Memories said...

What a BEAUTIFUL little guy you have, Heather. I love the one where he is praising God - I have NO doubt that he's quite spiritual. :)

He will be in my prayers.

Cynthia said...

I'm so glad he's doing well. I have a friend whose son has a heart condition. Like most people, we just assume after surgery that everything is fixed and we thank the Lord and mentally move on. I've learned from her that there is always more after the fact even if the scariest part is over.

Yeah for Asher! I'm so happy for your family. What a gift.

Kristen said...

Yay for everything going well. And coming from a mom who completely and totally stressed about her son's language development - I must say your plan sounds better. :) And yes, now my son is 4 and never stops talking.

charrette said...

SO GLAD to see the picture of him with that pacifier. Thanks for posting that! And don't ever forget, you totally rock! When I saw those photos and thought again about all you've been through this year, I cannot even imagine the stress and the heartache and the constant, pleading prayers. (So grateful I could at least help with that last one!)

He is a living blessing, a living miracle, and when I think of all the heart's he's united...oh, he must be one very special little boy, and God must have great things in mind for him someday.

That Girl in Brazil said...

Your welcome.

Now let ME say thank you ... for your inspiration, faith, and ability to see the larger perspective.

Thanks, girl.

Rach@In His Hands said...

Look at that brave, beautiful boy! He is blessed to have such an incredible Mama. Praying for you...

Eowyn said...

Wow. To see him so happy and to have gotten through it. I had a child in the hospital at a year and a half. It wasn't nearly as major a thing as his was, but it was so stressful. Kudos to you for getting through it.

Related Posts with Thumbnails
 

Blog Designed by: NW Designs