So...a bit of an update.
Weston was seen by a geneticist this last week, due to concern from his new pediatrician--concern over his hyper-mobile joints (you really have to see it to believe it). She was suspicious that he might have a genetic disease called "Ehlers-Danlos Syndrome".
...Sure enough.
He has what she classified as "Classical Type" Ehlers-Danlos. Ehlers-Danlos Syndrome is a connective tissue disorder that, in some cases, can be life threatening. Since it affects all of your connective tissue, there is concern for your heart, organs, and blood vessels. People with the more severe "Vascular Type" run the risk of arterial or organ rupture (scary). His doctor DOES NOT think he has this type, but all EDS patients need to be treated and investigated as if they do. We will be seeing a cardiologist in the near future for an echo cardiogram, just so we know what's going on on the inside.
Concerns, looking ahead...
-Tissue fragility and easy bruising. Wounds take a long time to heal (We've experienced that first hand; a little scrape on his knee took a full month to heal).
-Complications from joint hypermobility (sprains, dislocations/subluxations, and flat feet)
-Low muscle tone, and delayed gross motor development. He will likely need occupational therapy and physical therapy.
*A plus...the doctor was genuinely surprised at his strength and coordination, considering his extreme hypermobility. I attribute it to his determination to
keep up with his brother...and a healthy diet from his mommy ;)
...Always trying to escape.
They were so good at the doctor's. It was a little over an hour each way, plus the time you spend in the office. That makes for a marathon of a morning. I was so pleased with their good attitudes. The nurses and receptionists were loving them.
How are we doing?
We're doing fine. Really.
It is what it is. You can't change it, so why waste time wishing that you could. We adore Weston, and everything about him. He has taught us a lot and I'm sure will continue to do so.
What a blessing he is to our lives.
We love you, Westy!
9 comments:
Sweet little Westy! I'm sure he'll be a body builder and blow everyone out of the water. Love you guys. What a sweetheart he truly is :)
xoxoxoxox
Oh Stacy, I'm so sorry to hear this confirmed but also it's so great to hear how well he's been doing! He is such a cute, sweet little boy - we love being around you guys! Those boys really are the sweetest.
Holy Cow! We will keep you guys in our prayers. Let us know if you need anything! I just read this post to Ryan and after the part where you talked about your good diet for him Ryan said, "Yep, she takes good care of him!". Needless to say, we are more than inspired by your mothering skills. Your boys are so cute! we just love your fam.
Holy Cow! We will keep you guys in our prayers. Let us know if you need anything! I just read this post to Ryan and after the part where you talked about your good diet for him Ryan said, "Yep, she takes good care of him!". Needless to say, we are more than inspired by your mothering skills. Your boys are so cute! we just love your fam.
Oh Stace! Wow, now that is some big heavy news to take on. Good attitude. It is what it is right? Although, sometimes it is comforting just finding a diagnosis so you can move forward with it rather than fishing around forever trying to figure out what is even wrong!! Your boys are the cutest and have the best parents ever. Oh and you better believe that he is doing so well because of your superfoods that you so carefully and lovingly prepare. Just love you guys so much!
You are seriously a super mom. I look up to you!
(I love the picture of Weston in his hospital gown and diaper, he is a cutie!)
Love these pics!!! Weston is too cute in his little gown! I know I've told you before, but we completely ADORE your boys- well, your whole fam for that matter! :) You really do have an awesome attitude about it all and I believe you'll be blessed for it. Weston's a champ and will get through anything put in his way!
Wow. I would me more than happy to have Owen play at our house during any doctor appointments! I am so impressed with how positive and upbeat you always seem, even with stressful situations.
We still want to have your family over for dinner!
Stacy.. I'm sure sad to hear about Weston. I honestly didn't know until tonight when I decided to catch up on favorite blogs (yours is definitely one of them). Anyhow, he is sure a very lucky little boy to have parents like you! Your boys are both so adorable... Just love the photos! And you're right.. it is what it is and we just deal with it.
p.s. Nicholas has narcolepsy and I didn't know it until he was diagnosed AFTER his mission. He takes pills to help with his sleeping. These little things are just who they are... :)
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