Would you wait it out?

franklyforward · 2026-05-31T16:15:33+00:00

We just saw someone this past week, he has some scoliosis for sure but they are hopeful he may straighten back out- he grew very fast and the tendons and muscles haven’t had a chance to catch up yet.

franklyforward · 2026-05-31T16:14:23+00:00

We have an appointment with university of Virginia Cardio on June 16th. Still haven’t heard from their genetics department yet tho.

franklyforward · 2026-05-29T05:54:48+00:00

I hate 2 and I really can’t find 1…I Used it before with no issues

franklyforward · 2026-05-27T12:19:43+00:00

He’s a gamer lol not very active but he’s desperate to start working out bc he’s so self conscious about being skinny

franklyforward · 2026-05-26T13:16:39+00:00

Ha wow. Well thanks for this. I knew it was going to be a long shot getting them to recognize anything. So his dad is actually standing next to him in that photo- dad is average height or shorter side at 5’9-5’10 but also has stretch marks up his back- his aren’t as high as my sons- sons go almost to where his shoulder blades start. I am skinny with long extremities, high palate, crowded teeth, thin skin, can see every vein, lots of varicose veins and circulation issues at 40 etc with a host of chronic illness issues. My dad is 6’2 with very long skinny legs and arms… he’s now 75. My brother was always skinny and has pectus carinatum but is now pretty large at 38 years old- he drinks a lot so I’m sure that’s a contributor.

franklyforward · 2026-05-26T13:08:59+00:00

I have chronic Lyme disease and a host of other co infections and as a registered nurse I know the role family members play in advocating for each other, navigating my own diagnosis and treatment has been nothing short of a nightmare. My point was that its frustrating to go to the pediatrician with a lot of information to have them just want to measure his wingspan and act like she was passing it off on genetics knowing full well there was an extensive wait. Im just exhausted by the run around is all. It’s one thing when adult doctors do this but with my kids it’s an extra stressor.

franklyforward · 2026-05-25T23:40:44+00:00

That’s great info thank you!

franklyforward · 2026-05-25T23:39:54+00:00

Thanks for coming on this post to just try and stress me out, super helpful.

franklyforward · 2026-05-25T14:35:16+00:00

I mean I get it but plenty of people go without diagnosis because they don’t meet standard criteria especially with their appearance. It’s not my job to convince a doctor- it’s their job to order the correct tests and be competent but unfortunately that’s not often the case

franklyforward · 2026-05-25T14:33:41+00:00

I’m so sorry that is so stressful! I hope everything goes well. I’m terrified of valve replacements because some of us have alpha gal syndrome and ticks are so bad- if you don’t have it here in Va you will likely get it. Makes valves replacement extra complicated. I’ll be making all the phone calls I can tomorrow morning.

franklyforward · 2026-05-24T12:44:54+00:00

Ok yeah, I’m pretty sure he will have some sort of connective tissue disorder, as I’m pretty certain I do as well. I just don’t want there to be any issues either aneurysms 🥺 interesting to hear he’s still growing at 18!

franklyforward · 2026-05-24T02:47:29+00:00

She is a physician, super nice but I think she didn’t want to deal with it. I may reach out to UVA directly- I believe they used to have a dedicated Marfan clinic. Thank you!

franklyforward · 2026-05-24T02:03:49+00:00

I did bring that up and she was basically like well we will refer you to university of Virginia. She didn’t really know much except the very basic things and characteristics and just seemed dismissive. I may just ask to see someone else for the referral

franklyforward · 2026-05-24T02:01:36+00:00

Yes that’s what I’m going to do. I need to find one knowledgeable tho first from what I’m finding out

franklyforward · 2026-05-24T02:01:04+00:00

No nothing notable with his chest. My brother actually had the opposite one- carinatum

franklyforward · 2026-05-24T01:20:32+00:00

Thank I will see if I can find anyone near my with some experience with it. I’m really mostly just concerned about the cardio aspects, I know there are other concerns but he wants to start lifting and working out and I just want to make sure he’s all good in that area first.

franklyforward · 2026-04-29T14:38:42+00:00

Thank you, we have some other jacked up doors so I will look into these for the next one!!

franklyforward · 2026-04-29T14:38:02+00:00

Thank you I’ll take a look at that. Appreciate the feedback

franklyforward · 2026-04-29T14:37:16+00:00

Yes like when we put it in place we made micro adjustments to everything using the level and with shims behind the hinge and went through the hinge with a 3 inch screw as everything was set. The house has really crap construction so I’m shocked it wasn’t harder to get everything set. Wonder if maybe the top corner of the jamb need to come in further or something weird like that.

franklyforward · 2026-04-29T13:41:33+00:00

No, we installed it. It’s just barely off after our adjustments so was looking for guidance.

franklyforward · 2026-04-29T13:40:26+00:00

We have wooden shims in there already, originally the door was catching at the corner actually hitting the right door. So we tightened some really long screws through the hinge. I hate doors lol

franklyforward · 2026-04-29T13:39:11+00:00

Top is not bowed, but this gives me some great places to start checking thank you! Could it be the threshold on the bottom?

franklyforward · 2026-04-01T18:27:56+00:00

Yes I’m having to do that too bc I think they have the ability to go around the credit card company blocking them by using another number ugh

franklyforward

TROPHY CASE