Friday, June 29, 2012

Comment Response + Long Overdue Update

I received this comment today :


"Are you serious? You haven't posted in 5 months and then it was only to beg for money? Just shut down the blog."

I feel the need to respond because this really hit a nerve. Yes, 5 months ago I was "begging" for money. I begged and pleaded and groveled for it. I have no shame & I'd do it again. I *will* do it again, actually. Next year around the same time, in fact. The money I was begging for was donated to an amazing charitable organization called It's My Heart. They fund research into congenital heart defects and also make hospital stays and the day to day lives easier for "heart families" like ours. Without organizations like these, Linus and thousands of children just like him would not be here. Team Linus, along with your help, raised $3,450 for the Keep The Beat walk. The only thing I got in return was a t-shirt. I think we all know I'd have done it all without this glorious "prize." So, Anonymous Commenter, if you would like to send me your name & address, I'd be happy to send you a moderately worn, unisex medium shirt circa 2012. Then I can truly say all of that fundraising was done purely out of the goodness of my heart.

As for shutting the blog down, no thanks. I get comments, emails, FB messages and the like every week from people around the world saying that they connected with our story in one way or another and were grateful to find it. Some are lesbians, some have heart babies, some have triplets and so on. If I never write another word in this space, this blog will continue to speak to people looking for something to relate to.


And now for the update...

As many of you know, the reason I stopped blogging in the middle of my fundraising was because Linus went into cardiac failure. His mitral valve gave out completely causing him to go downhill very quickly. We only had 6 days notice before he was in his 3rd open heart surgery. The surgery was scheduled for the day after the Keep The Beat walk so we were unable to go. It was too dangerous to expose him to that many people. Catching a bug would have been disastrous to his health and healing. That's ok, though, because I still got my snazzy t-shirt. ;) Linus's surgery went very well and he was fitted with a super high tech mechanical mitral valve made out of pyrolytic carbon. We can hear it click if we listen with a stethoscope. Very long story short, he was in the hospital for 32 days while he healed and we got his blood thinner dosage worked out. Actually, we *just* got him stable where coagulation is concerned. He left the hospital on 2.5mg Warfarin a day and we're up to 4mg/day as of 2 weeks ago. Basically too little blood thinner in his system and he could form a clot on his shiny new valve which could glue it shut or break off and travel to the vessels in his brain or lungs. Too much blood thinner on board and he could have spontaneous internal bleeding. None of these things is ideal, so we monitor his INR here at home 1-2 times a week.

Since this surgery, Linus has been making huge strides in every area of his life. He stopped vomiting, he's started eating a little by mouth, he learned to walk (with the help of ankle braces), he's had a major growth spurt, he started talking some, he learned a million signs, his energy level is way up, I could go on and on. He is a completely new kid all around! For more timely updates on him and his progress, feel free to "like" the Team Linus page on FaceBook.


As for the rest of the family, we're all doing pretty good. Trina continues to be an amazing stay at home wife and mother. Simon is a beefcake that is often mistaken for a much older child. He LIVES to destroy and/or eat things. Living with him is not unlike having a mischievous labrador puppy loose in the house. Dexter has a ridiculously extensive vocabulary and repeats *everything* you say complete with facial expressions, hand movements and body language. His parroting runs from impressive to embarrassing to annoying and back again. He is the sweetest, snuggliest little thing around.


5 Months in Photos

The boys modeling their Team Linus shirts for the Keep The Beat walk.I'm bummed we couldn't attend, but so glad I got this pic before Linus went into the hospital.

This is Linus's new prosthetic mitral valve.
He'll need it replaced in about 5 years when he outgrows it.

 Linus just out of surgery.

 Lots of meds and machines keeping our boy going.

 I was thrilled that he was not only awake, but thirsty. He progressed so quickly this time. 
Notice my super cool Keep The Beat t-shirt?  

He shed lines, tubes and monitors at lightening speed.
His wrists, groin, ankles and neck all looked like pin cushions. 
Poor little thing is an impossible stick.

 Out of the CVICU and out of bed.
Keeping up with his fans and well wishers online.

 Discharge Day!

 First group bedtime story after leaving the hospital. 
It felt so good for things to return to normal.

 Heading to target in the choochoo wagon.

 A little road rage at the grocery store.

 Playing in the fort.

 Tossing water cups down the slide and watching them fly off. 

 Snack time at the splash pad.

 Glow light bath time.
Good thing they're non-toxic since Simon decided to gnaw on his...

 Playing in the pool on a hot day.

 More water fun.

 More pool time...

 Eating breakfast at the table. 
No more high chairs for these big boys!

28 comments:

K J and the kids said...

I guess I'm not sure why someone would even comment when that's all they had to say. :( I'm sorry.

I'm a facebook follower so I have missed nothing on this crazy trip of yours.
I for one will take a post every 5 months.

Anonymous said...

Thank you for the update! I too follow you on FB and love any updates whether here or there!
As for "begging for money", beg all you want :) I donated to your cause and will do it again, HAPPILLY! Take that mr. Or mrs. Anonymous...

Shirin Modaresi said...

Don't stop blogging and don't listen to one meanie out there. I don't know you guys but I'm always glad to see how your boys are doing. I have 2 boys and one that is very close to your boys' age. Good luck and glad the valve is working out!
-Shirin

AKA Jane Random said...

Oh, aren't mean anonymous commenters just the best? Ignore the haters. Y'all rock, the kids rock etc.

somedayisnotadayoftheweek said...

Anonymous blogger can shove it. It isn't like you aren't living your live with triplets - one with a serious heart condition! Request money as needed. Blog when you can. Always great to hear an update. Your family is amazing!

Jessica said...

I love your blog posts and I gave and would give again over and over. It's a shame that someone would write that. I never considered you 'begging' for money. You were fundraising for an amazing cause. And while I don't 'know you IRL' I do know that if you could give your own heart to Linus--you would have already done that. Raising money to help Linus and other kids..is an amazing second best. :) Much love to your family!

Rachael said...

Wow. I can't believe someone would leave a comment like that! Anyway, your boys are adorable and your family is so awesome. I am a new reader, but do love reading when I can. :)

frankncents said...

I'm sure you're getting lots of comments along this line, but I do not mind at all that you are spending time with your boys instead of posting every tooth, meal, and poopy diaper! I only have one reasonably healthy toddler, and I can't remember to get to the blog more than once a month any more - the whole focus of life has shifted since her birth, and I'd rather my energy went to being a good mom than to being a prolific blogger.
I'm happy to catch up through any posts you care to make, and don't let any bullying commenter push you around!

A :) said...

Thanks for the update! The boys are getting so big and beautiful! I follow on fb too but I hadn't seen the last few photos. They are georgous!

breakingintoblossom said...

What a douche canoe. But I love this (hilarious) response so, so much, and I hope s/he comes forward for the t-shirt!

Shauna Gunnell said...

I've never commented on your blog before, but feel compelled to. You don't owe your blog readers a single thing! That reader should be THANKING you for sharing your story with the world. If they don't want to read it, they don't have to. UGH! As a fellow blogger of a medically fragile baby, I just can't imagine some moron telling me something like that. They obviously don't know what it's like to walk a mile in your shoes. And am now in love with the term above, "douche canoe"! hahaha :)

I'm so glad you're all doing well these days. Big hugs to the five of you! xoxo

anofferingoflove said...

seriously? people (especially anon commenters) suck.

the pictures are beautiful - you have a gorgeous family! im glad Linus is doing so well now, he was in my thoughts daily throughout his last surgery.

~L said...

So awesome! I've followed you guys here when you were still trying to conceive and migrated over to FB as well. I love hearing about you and your family. Those smiling boys are the best!!! As always, my best wishes to you and yours!

TooeleTwins said...

Screw you, Anonymous Jack Wagon! These wonderful women have a life, and a very busy one at that. They do not owe me or you anything, especially a detailed family update every week. Besides, if you were even remotely cool, you would be following them in the blogosphere AND Facebook like the rest of us.

Moms and boys, Please carry on with the awesome cuteness.

Kara-Kara Pumpkineater said...

Ugh!!! Keep doing what you're doing, mama! :)

Trish said...

People are heartless and occasionally moronic. I'm delighted to see the photos and to know your family is still having fun and sharing the love. Don't let the turkeys get you down!

Stefanni said...

I'm so glad to see a new post from your sweet family! You and your boys were in Woman's Hospital when our triplet grandbabies were born on October 16. I have followed your story since then, and am so thankful that Linus is doing well and flourishing. All three boys are precious and you two are very blessed with them. Triplets are amazing, aren't they?

Christine Fretwell said...

Welcome back. I wasn't following on FB but am now.
I was worried when there were no posts. I'm so glad he's doing better.

Those little boys look so good together. I only have twin boys and know the energy level with mine, I can't imagine three (sheesh, who would have thought I'd day only twins).

AdventuresInBabyMaking said...

I don't know what it is about the Internet that turns people (who may be perfectly sane in real life) into heartless aholes (or maybe that person is always a jerk). Anyway, glad to hear the update. Have been wondering how things were going. Your poor little guy has been through more than his fair share - glad he bounced back so quickly! And I love the photo of him with such a big smile, despite everything!

-C- said...

This is Caroline/pineseedling from facebook/babycenter. I'm sorry you had a mean commenter. I had so many truly hateful ones when we were trying to adopt. It's so funny how we give the mean comments power and they stick with us for years, whereas we tend to gloss over the nice ones. The online community can be such a source of support and also such source of bullying. I too decided that my blog was useful to others and that was its purpose and I didn;t take it down. But that whole time left a bad taste in my mouth and I am now thinking of starting a new, more private blog without that baggage. But you're right, people need to hear your story and you tell it so well. Please keep it up!

Anonymous said...

First of all, this is my first time visiting your blog, but I almost started crying when I saw your son hooked up to all those machines. I'm sure you're used to all of this by now, but it trouble me to see a child his age have to endure so much pain. I will continue to pray for him during his fight for survival.

loveshackbaby said...

I'm always happy to see your updates, even if it's only 2x a year! I'm sorry to hear that Linus had a setback, but glad to read that he's doing better now. :)

They are such cuties! I absolutely love their little grins.

Amanda said...

I cannot believe anyone would say that!!! I too am a FAITHFUL facebook follower. My wife and I triple LOVE those boys and check in on you guys often. Do what you have to do for those boys and forget the rest. Stay strong and keep those FB updates coming. We are 100% Team Linus :)

twomomsandajourney said...

I have been waiting for an update and pics of the boys. I absolutely love seeing them and I will wait another 5 months if that is what it takes. Your boys and family come first.
I follow on facebook as well and havent missed a beat with your updates there. I'm sorry someone would be so rude and inconsiderate to post a comment like that.
"begging for money" Damn right! I donated and I will do it again when you beg again. :-) If my donation can help save one childs life then it is worth every little penny I can scrap up to give. Keep on keepin on!!

Shelby said...

Yuck. :( Please don't pay any attention to people like that; if they had read your "Team Linus" updates they would have understood why you were away for a while. Anyway, so happy to know that Linus and the rest of your sweet family are doing well.

Blessed x3 said...

I found your blog through Bloglovin. When I joined, I had to pick 5 blogs to follow & they were nothing like me. So, I chose the 5 closet to me. Then, unfollowed them. Then, searched for ones that we closer to what I was looking for. Then, I found your blog. I am sorry about Linus. Don't listen to those negative comments. My daughter has a neurological disease called Spastic Paraparesis. I decided to join sites like Bloglovin to get the word out about her disease. I love the t-shirts that your boys are in. So cute! Go Team Linus! I wish I had the extra money to donate. I am disable & we have limited income, but I do have a blog & twitter. Say the word & I can have you as a guest blogger once I get more readers!! I would love for you to do an educational blog on your son's condition. Let me know.

daninorbit said...

This blog is an inspiration to say the least. I hope that life gets easier, and in turn you may have more time for posts.

Good to hear that ya'll are moving and shaking again.

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