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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!
My name is Sarah mommy to Danny and he is FTT with malabsorbtion, 2500 calories needed for a 20 month old to gain weight. We are finally finding that it might be Celiac's but we also found out it might be CF and that was wrong so no real answers yet but we know the ups and downs of this. I hope you find as much support here as I have and I hope that the GH help tons!!!!
welcome! Sounds like you have a lot going on right now! My Abbey is 9mos and FTT, weighing in at 12lbs. we have no idea what is wrong with her, she has had sooo many tests done and all normal so far...very frustrating!