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!