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Posts by preemiemamarach

As the parent of an immunocompromised child, I am shocked that someone would be so selfish as to risk my child's life because they don't feel like skipping a FESTIVAL when their kids have a very contagious illness. My son is three, and he is essentially homebound. I have already lost the ability to earn an income because he is medically fragile. We take every precaution we can, and it severely limits our lives. Occasionally, I like to do something fun for my children...
we just started with my son; we have our second session tomorrow. We have 4 people working with him- one instructor, and three volunteers (sidewalkers) who are there to keep him from falling off (he has very low trunk tone). So far, we love it! He just turned 3, and has a number of issues (severe speech delay/apraxia, brain lesion, hemiparetic CP, epilepsy, hypotonia, and a bunch of GI stuff). We are looking to do this mostly for increased trunk stability and, if it...
We did use it at around 14 months when DS was severely FTT. it DID work- doubled his intake from approximately 20 ounces of elemental formula a day to 40 ounces. Unfortunately, the increased intake (we'd just started elecare) caused him to have a severe reaction to the corn syrup solids in the formula, and we had to discontinue it (and a huge, unrelated saga followed). So, I'd say definitely try it. Huge difference for us in the week we used it. Also, to give you a...
Quote: Originally Posted by Mulvah Thank you for eloquently saying what I've been wanting to say for a while. Exactly. I EP'ed for my son out of medical necessity for 13 months (he then became intolerant to my milk- very rare, but it happened). I breastfeed my daughter directly, as she doesn't have oral hypotonia like my son had. I consider that BOTH of my children were/are exclusively breastfed.
OP, do you have rectal valium (Diastat) to give her at home? We are supposed to give my son Diastat for anything lasting over 5 minutes (and then call an ambulance). I would absolutely call emergency services if she has another seizure lasting more than 5 minutes and you have no Diastat. That can be dangerous. My son has multiple medical issues- he is undiagnosed, but it is assumed, based on symptoms and testing, that he has a very rare metabolic disorder. He...
Quote: Originally Posted by MotherWhimsey I totally forgot about babylegs. they are teh awesome! Amen to that! Honestly I don't think we could ever have too many babylegs. In fact, I've been meaning to get some toddler-sized babylegs to use when DS is hospitalized these days, as they make diaper changes so much easier than hospital pajama pants do. Another two things I would recommend- pacifiers and receiving blankets. Since Fiona will be...
thank you for that brilliant post, savinthy!! As for the OP's theory, the opposite has been true for me. While pregnant with my first, I always assumed he would crib sleep, I would *try* to breastfeed, and honestly had no feelings about CIO one way or another. He was a 33 weeker, born after PPROM and pitocin + epidural, spent 15 days in the NICU, and never was able to breastfeed properly. I had to EP for him for a year, and he has extensive medical problems (I...
my kid is 2.5 and only on formula (we have to mix ourselves due to his corn and soy intolerance), plus pureed peaches and bread. Formula is 95% of his diet. He doesn't have a g-tube, and takes formula from a bottle still (he has major trouble with sippy cups, regular cups, and straws).
DS is 32 months, the reason i came to this board. He most likely has a metabolic or (specifically) mitochondrial disorder, but testing hasn't revealed the answer yet. His issues: -complete intolerance to all intact protein -multiple delayed-reaction anaphylactic drug allergies -anaphylactic food allergies -severe gastrointestinal food intolerances -feeding delays/dysphagia (he is only now able to chew and swallow small bits of solid foods) -diet consists primarily of...
you beat me to my possible answer! Hope it continues to feel better. Do you use anything like calmoseptine on it?
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