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Hey everyone! I hope this is the place for me... Sometimes it's hard to relate to my playroom when they don't know what I struggle with everyday.
My name is Natalie. Gave birth to Sean 1-17-11. He had a hard time breathing and remained in the nicu for 7 weeks. He was diagnosed with having glossoptosis and laryngalmalasia. After several swallow studies that showed aspiration on honey thick fluid he was operated on and given a g tube. He received a nissen fundoplication as well for reflux. They don't know what the next step is but the ultimate goal is for him to eat on his own. He has stridor (noisey breathing) but without it you would think he is normal. He gets seen by home health, pt, and ot once a week and at least one of several doctors a week (neonatologist/pedi, pulmonology, ent)... It's like my life revolves around his care. He is tube feed so its hard to get up and go. I love my son and will continue to do anything and everything for him but I must ask... Do any of you ever feel like you have lost yourself in the everyday struggle to care for your child on need?
He sounds so much like Ava. She was born with severe laryngomalacia and tracheomalacia. The first pulmonologist wanted to trach her, so we went to Cincinnati aerodigestive team to airway reconstruction. It was so helpful. She's still on oxygen and has a gtube and port. We've found out she has Mitochondrial disease.
You belong here and I'm glad you found us! Welcome
I'm so glad I've found you! Lol. It seems like no one knows what I'm talking about half the time. Sean isn't on onygen but they are considering a surgery to tack down the floppiness in order to reduce the stridor. He's seen by unc chapel hill (3 1/2 hours away).
It seems like my days are so structured right now with all his appts but he really is a joy. Hopefully one day they can figure out what's wrong so they can fix it.
I'm fairly new without all the medical jargon so please don't mind my typos.
Hi! Sorry I've missed this post. I can very much relate to the feeling. My daughters situation is very different but we're in therapies up to 9 hours a week and that doesn't include our specialist appointment. The situation has really motivated me to become a PTA. I can't do it because I can't allot the amount of time required to be in a couple pf the classes. I've lost the time to scrapbook (which is my favorite hobby) and every cell phone minute I use is to coordinate a doctor appt or therapy appt. Many days I feel like her secretary, but in the last few months we've seen HUGE progress. She's gone from no words and only being able to crawl to walking across the room and 5 verbal words and several signs. Seeing the progress has made it feel a lot better. Glad you found it here, these ladies are great and if you ever wanna talk, I'm around a lot
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
For just laryngomalacia, they may do a surgery called supraglottoplasty. It can be highly effective. Most kids have to stay intubated on a vent for 24 hrs after surgery for swelling to go down. Other than that, it's a great surgery. Usually 2 days in the PICU, then home with a much more quiet baby!
Danny doesn't have problems near as severe as you guys but I still feel like my life revolves around doctors. It is much less apparent this summer now that I am out of classes for the summer but if he isn't going to 4 doctors every week I am still coordinating with all of them trying to get things set up for vacations, next appointments, out of state appointments, etc. It is a mess...
Just wanted to say hi. I'm Anna. My little one, Ellie has multiple special needs and I can definitely relate to feeling lost in her everyday care. It can be overwhelming when I'm going to therapies and doctors appointments almost every day and having to manage her needs at home and coordinate all her care. I feel like her sisters suffer for it the most because I can't be there for them the way I want to. But we have many more good days than bad at this point.
I'm glad you're here. Looking forward to getting to know you.