I follow a few other blogs for special-needs kiddos and their mommies. It makes me feel better knowing that my situation and knowledge might be of some help to another if I'm at all able to offer them support. One mom recently posted a number of FAQ's because she gets asked the same questions over and over about her son. And actually, all of the questions she posted were questions I had wondered about them and didn't ask because I was afraid to. There's something that happens when you personally invest your thoughts and prayers in someone...it's like having a one-way friend, that you really don't know much about other than what they post. It got me thinking...do people have questions about Joel? My blog has close to 6,000 views, but very little comments, I know people do actually read this stuff.
I hope that if you feel compelled to ask questions, you will. I can't tell you the number of times people see Joel in person and have a pained look on their face when they ask about him, like maybe they aren't supposed to ask? Be curious? I don't know. I'm not at all guarded about the things that we're going through with Joel. I love sharing our story because to me, this is one of the best chapters in my book, stressful or not. My son is a miracle, so ask away.
So, I will ask a question. Especially because I did not even know you were on baby #4, and because he is so stinking cute. And because I think you are handling this with such grace and elegance...
ReplyDeleteWhat are some of the other conditions he has along with the initial heart defects? Does he wear those glasses because of it? Does he have muscle tone issues? Will he be able to talk with time?
Sorry, more than one question. I have always thought that it may easier to answer honest questions than deal with funky looks of wondering...
God bless you!
Juliana
Hi Kari,
ReplyDeleteHugs to you today sweet friend. Here are our questions.
Is Joel's heart defect completely fixed now or will he need more surgeries in the future?
Also, with the fix will his heart work normally or is it's function impaired?
Thanks for answering our questions.
Stacy, Bob, and Greyson
Ditto on the funky looks! We get a lot of those :) Joel had "side effects" from his heart surgery....which include:
ReplyDeleteJoel's Diagnosis:
Transposition of the Great Vessels
ASD & PDA (atrial septal defect & patent ductus ateriosis)
VSD (apical muscular ventricular septal defect, surgery not needed)
Grade 3/Grade 2 bilateral head bleeds
Congestive Heart Failure
Convulsions in newborns
Lymphatic Clots
Multiple Venous Thrombosis
Obstructive Hydrocephalus
Chronic Pulmonary Hypertension
Pulmonary Embolism (lung clots)
Atrial Tachycardia
Chronic Respiratory Failure
He wears his glasses because his eyes don't coordinate well together....and we're not sure why. Maybe because of the stroke? They don't have a prescription in them, but parts of the lenses are blurred, forcing him to "exercise" his eyes. His muscle tone is still a BIG issue. We have 4 weekly therapists that help us work with him to build muscle tone back up. He was sedated for almost the first three months of his life, and that made him really weak. He can talk now, if we put a one-way valve over his trach. He'll be talking a bunch when we get his trach out in a few months :)
Westfalls-
ReplyDeleteWe were extremely fortunate to have his heart be completely fixed. No more surgeries. I don't know about his heart function, though, I think with his specific defects, we are a lot better off than others. I do know that in the future, before Joel goes to the dentist, we'll need to get him on antibiotics b/c of the risk of him getting an infection, so things will be different, but I don't know if it's just a precaution. Love to you too, friends!!