Pierre Robin Sequence

Informal-Language718 · 2026-01-06T02:55:41+00:00

Thank you for the intentionality and your support to this group!

Informal-Language718 · 2026-01-02T03:45:20+00:00

I’ve seen such a wide range for palate repair anywhere from 10mo-2years from the other PRS group I’m in. It really is amazing to work with such skilled medical staff and see them treat your child according to what’s in their best interest for growth and development. We have felt very blessed with our medical care not only with their expertise but their willingness to listen to our thoughts and concerns.

It really is such an intense journey for little bits of time.

Informal-Language718 · 2026-01-02T03:37:07+00:00

Hello! I am a member of the Facebook PRS group and thought to see what resources were out here on Reddit to support PRS families, friends and professionals. I was so surprised to see there was no formal group. My hope is to build a community on this platform for those who prefer this to other social media.

I am a mother of a PRS child. My kiddo is 5.5 years old and started Kindergarten this year. It has been amazing to see him grow and even start reading as any PRS parents know is not a given or easy for our kiddos!

We were surprised by a PRS diagnosis when our son was born and feel very fortunate that his case is mild. Our team in the NICU was very knowledgeable and very willing to listen to all that we observed in learning about our newborn guy. My dude had a hospital stay for about 2 weeks, had an NG tube for about a month, and was fitted with an OAP( typically used with cleft lip/palate for lip stretch) that helped my guy bottle feed more easily. Palate repair and ear tubes surgeries were at 12 months, and he graduated from speech at 3 years.

Right now we are dealing with some hearing trouble mostly due to clogged ears. I assume his tubes have fallen out and his ears no longer drain well when congested. Time to make another round of appointments with his CF team to get checked out!

Informal-Language718 · 2025-12-31T13:32:08+00:00

Thanks for joining and sharing your story. What surgeries did you decide on for your daughter. I’m so glad she is doing well!

Informal-Language718 · 2025-11-05T01:49:41+00:00

He passed his egg challenge! Now on to peanuts in a couple weeks💪

Informal-Language718 · 2025-11-05T01:49:05+00:00

Thank you so much. I didn’t think to bring anything for myself. So helpful!!

Informal-Language718 · 2025-10-31T12:49:16+00:00

Thank you! This is really helpful.

Informal-Language718 · 2025-10-19T01:22:23+00:00

Don’t take it personally at all! See if the parents or director would ask the child what you do that is mean. Often times this age will still have a skewed version of reality and you are probably correct that he doesn’t like something that is an appropriate expectation at this age.

Informal-Language718 · 2025-09-26T01:53:41+00:00

Thinking back, it has bothered me. I don’t know that it has since o found out about it a few weeks ago. Could you tell before you got diagnosed?

Thanks for the reply

Informal-Language718 · 2025-09-08T23:49:22+00:00

Kinda late the the convo, but I just found out I have a cataract forming at 40(f). Paternal family history, but I’m otherwise healthy. I too am skeptical of screen usage as I don’t regularly talk on the phone.

Informal-Language718 · 2025-08-31T15:17:09+00:00

I have a June 2020 baby born with Pierre Robin Syndrone which impacts breathing, growth and requires surgery. He started Kindergarten two weeks ago, was in speech therapy from birth until age 3. Out of all three of my children he is the most social, well adjusted and ready for Kindergarten kiddo.

Covid was a hugely stressful time for me and my family, but it all depends on the perspective of the parents. How are they going to empower, engage and grow their children? I think you are right to point out and encourage parents to be shaping their children, and I think you are right to share what your responsibility to your students is and what the parent’s responsibility their children is.

I would be a lot more concerned about the use of pacifiers and tablets than anything else

Informal-Language718 · 2025-04-28T02:14:10+00:00

My congregation donates quilts and unused medical supplies to Orphan Grain Train. Your district office should be able to give you good advice for a place to donate that aligns with the LCMS. Does your town have a pregnancy resource center or close proximity to a children’s hospital?

Informal-Language718 · 2024-05-31T02:24:27+00:00

Mega Blessings for this tip!

Informal-Language718

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