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Hello! I'm new to this board, but not new to JM. I just haven't been able to post in a very long time! I'm also not entirely sure that this is the right board for us, but here I am, anyway! Hehe
I have 2 sons, Kannon and Milo. Kannon is 2.5, and has been very healthy except for severe sleep apnea, which they're hoping to cure tomorrow with an adenoid-/tonsillectomy. Milo is 10 months and was born with Russell-Silver Syndrome, a very rare form of dwarfism. He's teeny and sweet and adorable. He has several problems that come with RSS, including plummeting/low blood sugar, poor immune system, and more. He was labeled as failure to thrive, had a g-tube placed at 11 weeks, and still hasn't gained properly, but we expected that-it goes with the syndrome. He was easily dehydrated (RSS kids sweat a lot, have reflux/vomiting issues, and he has breathing problems), and was hospitalized in December for that. They sent him home...and he went back in January with RSV complications. They had to "pre-code" him his first day, and he spent the next 2 weeks in the Special Care Unit. Because of his low muscle tone, he can't cough well, so that was part of it. In Feb, we went back again because of dehydration. A kindly pulmonologist was called in-and he finally started things rolling! Milo had a sleep study and was diagnosed with severe obstructive sleep apnea. He had yet another GI study and pH study and was officially diagnosed with stomach issues (they knew it, but for surgery, they need the clinical evidence), and was also diagnosed with some breathing problem, yet to be named! In March, he had a fundoplication to keep him from vomiting anymore, as well as an adenoidectomy. They told us that in addition to his high, arched palate, he has a hint of a cleft palate. He's on several meds, nebulizers, overnight/naptime oxygen, overnight pump feeds, and we have OT. His cognitive and fine motor skills are ahead, but he struggles to hold his head up, has just started doing that and rolling, and shows no sign yet of putting pressure on his legs to stand. He doesn't have cerebral palsy, but is classified with the other kids who do. We're about to start growth hormone for him-he failed his stim test, which is unusual for kids with RSS. They usually have plenty of GH, but their bodies just don't recognize it. When Milo was born, he had an MRI that showed low-set, small optic nerves. That hinted to the endocrinologist that something with his pituitary gland (where the optic nerves rest) wasn't working properly. He's tiny, even for RSS, so they did the test. GH should help with SO much!
I'm sure that I'm missing a lot of info, but that's what I can think of for now!
Wow, you've had a journey. Good luck with surgery tomorrow, I hope it helps!
Our kiddos have some similar problems (minus RSS) and my DD will be spening the first week in May getting a complete work-up. We're hoping to avoid a trach and nissen. She isn't doing well with physcial milestones either. She turned one 2 days ago, she can't support her own weight or crawl.
Thank you for the welcome! I know that we're lucky that we've had some of this stuff done so early. I've been annoying, though. I have a HUGE problem with standing up for myself, but when it comes to my kids...hehehe. Apparently, not so much! I did all the research and basically told the docs what they needed to do. They don't listen and I'm ALWAYS right about what will happen next. Some docs don't get that we know our kids better than they do!
I've been reading through some of the posts trying to get to know people on here, but do you mind if I ask you to tell me why DD needs a trach and fundo?
You are so right!! You are your child's best advocate! You know your child better than anyone!
Ava has very severe tracheomalacia and laryngomalacia, her airway callapses/obstructs. A trach would bypass the obstruction temporarily. Aspiration and reflux come with these problems, so a nissen would help. She also has some smaller "congenital anomalies". She will have a full workup the first week of may. We'll go from there. We think she may have a syndrome.
Thank you, ladies, for the warm welcome! And good luck on everything coming up for your little ones! It's a long road, but so worth it!
We're working on testing for CF now. I should know better-everytime Milo goes to the doctor, he ends up with more meds, more equipment, more tests, everything. But, I'd rather know than not, and I'd rather be doing something about everything that I can!
He's 10 1/2 months old and about the size of a newborn. He can even still wear a lot of preemie clothes. This is WITH the g-tube and fundo. He'll just be very small for a while. We can handle small...it's all that other stuff that gets to us. Of course, we're handling it, too...I just wish the docs would coordinate and get it all done at once!
Oh what a journey you've been on. While I am sorry we've met under these circumstances, it's nice to meet you. You sound like an awesome mom, your kids are very lucky.
I posted an intro not that long ago about my son Carter. One thing I didn't mention is that Carter is small for his age, not on the same scale as your son, but he's 16 months and the weight of a 6 month old, I sure d get a lot of questions when we are out!
I am glad we can be here for one another. Welcome.