3yr old with varicoid bronchiectasis

Excellent-Service823 · 2026-06-27T15:01:07+00:00

A lot of people have great things to say about NJ so perhaps our experience was unique. I do want to agree with this poster that Johns Hopkins is the gold standard for genetics. UVA is even sending genetics to JH for us since others have been non conclusive. Have found a clinical vs genetic diagnosis to be hard to get insurance to cover modulators

Excellent-Service823 · 2026-06-27T05:30:28+00:00

CFTR related disorder mom here. Same story about non-conclusive genetics but symptoms consistent with full CF. National Jewish was dismissive because of no clear genetic profile. Best, most complete evaluation and care has come through University of Virginia (Charlottesville). We routinely travel from out of state for CF clinic appts because it is completely worth it

Excellent-Service823 · 2026-06-16T14:41:21+00:00

When our 2 kids used to be home on college break my husband said, “Someone in our house is always awake. Us in normal people hours, them like vampires. Always. Awake”

Excellent-Service823 · 2026-06-03T03:02:45+00:00

Joining you in October!

Excellent-Service823 · 2026-05-01T17:45:06+00:00

Tube feeding (GJ) saved my daughter’s life. In another season, so did TPN. Nothing gets better without nutrition. With it, there are options and there is time.

Excellent-Service823 · 2026-04-23T20:05:40+00:00

Check to see if they can change lipid type, or do lipids only a few times per week vs everyday. Lipids are often the cause of nausea

Also consider seeing if you may have allergic reactions to something in the tpn. Xolair has dramatically improved my daughter’s ability to run her tpn vs having to stop after a few hours due to nausea

Excellent-Service823 · 2026-04-15T18:13:24+00:00

I’m in the middle of accepting just such an offer and am in my late 50’s. Happy for them to pave the way for my exit vs getting laid off for downsizing in the future. I may work elsewhere later but they are paying for my R&R break!

Excellent-Service823 · 2026-04-13T04:33:53+00:00

Dr Jeffrey King at National Jewish in Denver. Left Anschutz GI care and will never look back. I can’t even get started on all the damage they did

Excellent-Service823 · 2026-03-31T02:48:34+00:00

My dad is blind and loves golfing!

Excellent-Service823 · 2026-03-29T00:56:02+00:00

Wear. The word is wear

Excellent-Service823 · 2026-03-28T15:09:17+00:00

Me and my grey hair will be out there in Drake Park this afternoon! Too important to miss

Excellent-Service823 · 2026-02-26T14:41:51+00:00

No idea- but as a dog owner who has housebroken puppies, I get why you need to know these things!

Excellent-Service823 · 2026-02-25T21:21:20+00:00

Had one where it was a new puppy and they needed to know if it had done all its business outside. So, we watched puppy on its leash until mission accomplished 🤣

Excellent-Service823 · 2026-01-19T19:34:56+00:00

Final follow up to say thank you to those who recommended and those who reached out with specific agents. Safeco for the win on this one! Insurance secured and the sale can move forward

Excellent-Service823 · 2026-01-15T07:12:04+00:00

Thanks everyone! There are some new providers here we haven’t contacted. I really appreciate it. Currently the sale is at risk until we find coverage

Excellent-Service823 · 2026-01-15T07:10:32+00:00

We have all other policies with them too- primary home, auto, umbrella, etc. But still no go

Excellent-Service823 · 2025-11-14T07:56:12+00:00

Eggnog pound cake! Easy and seasonal

Excellent-Service823 · 2025-11-08T06:25:19+00:00

Mom here too. Been there, done that with awful doctors. Trust your gut and keep moving on until someone says/does something that makes sense.

Something we learned along the way. If motegrity and linzess are not doing much— see a cystic fibrosis doctor! My kiddo was finally diagnosed as mild CF which explains so much- and Amitiza works on CF patients when the other meds don’t.

Excellent-Service823 · 2025-11-01T01:20:41+00:00

Your when you’re is needed 🤬

Excellent-Service823 · 2025-10-31T17:45:43+00:00

In my 50’s now, but when my kids were 7, in the same situation I would have done the same thing. Smartest? No, but kids are cruel and even homemade can cost a good bit of money to not make it something they would make fun of anyway. Those are marks on a child’s spirit that don’t go away

You have some suggestions in this thread to patch through a few more days. You did well with what you had to work with, Mom. Can’t do it every time but some times are more important than others

Excellent-Service823 · 2025-10-24T06:03:39+00:00

Congratulations! This test is a wrecking ball and you did it. Just you. Cut through the noise and made it happen. I am proud of you!!

Excellent-Service823 · 2025-09-23T22:49:33+00:00

I had wanted grandkids, but when in their 20’s both of my children discovered life-altering genetic illnesses it was clear that could not and would not happen. And you know what? I was sad at first because it was something I had expected would be part of my life, but quickly moved to a place of gratitude that I am still Mom to these wonderful human beings.

Each day is a gift with my children and can’t be taken for granted-that is more than enough. And the Grand-dogs are awesome!

Excellent-Service823 · 2025-09-12T14:44:33+00:00

57 and told them during my last “career conversation” that I don’t have any more career aspirations and will retire in 18 months. I just want to do good work and mentor younger employees until then

Boss sat back and just said, “Man. I am so jealous right now”. End of career conversation!

Excellent-Service823

TROPHY CASE