So, we went to Spina Bifida Clinic last month, Feb 2nd... it was a bit discouraging, so I never took the time to blog about it. Basically, I had a lot of questions and they "poopooed" me a lot. They were most concerned with Jonathans weight gain, or lack there of. Jonathan has been holding steady at around 17lbs since 7 months. He IS growing taller and he looks and acts chubby and healthy, he just has really low muscle tone... and as every female knows, "muscle weighs more than fat." lol. They wanted to know why he was still getting most of his calories from breastfeeding (trying to tell me that after 1 yr there is no nutritional benifit.... ok but we are not EVEN gonna go there). I tryed to explain to them that I think he's choking/ aspirating on baby food, solid food and any liquids we try from a cup. I requested a swallow eval, they "oked it" but with an eyeroll and a bit of a brush off, saying "just feed him more". I mentioned to the Neuro Dr, who came breezing in, that I'm concerned that his breathing, eating, reflux and apena issues are ACII related... again, a blow off. I left frustrated and sad, and less than impressed. I also wanted info on a stander and AFO's for Jonathans ortho needs... yeah, no go!?! What the heck! It felt like a total waste of my day and my husbands day off! If we moved to Texas for medical care, I want THE BEST dang it, not to be a number in a HUGE system! Thankfully my primary ped Dr is WONDERFUL and he listens to me, trusts my instinct and gets me the test I WANT!
In the meantime I've found that (in addition to ad lib BFing) a breakfast and dinner of; 4-6oz #2 baby food, thickened with 1tbs of flax seed meal (which you can find in the baking isle at Walmart) and 1 tbs baby cereal along with an iron FREE multi, goes down safely, helps with the weight gain AND keeps the bowls moving! Yay for Omega 3s! We gained 1 lb, 5oz this month!
Where do you go for clinic? This isn't Scottish Rite is it? I can't believe they aren't taking your concerns seriously, especially the ACM concerns. Good grief. These doctors like to think that they know our kids better than we do (after they have spend about 2 minutes with them). It makes me crazy. I'll be praying that you get the answers you need and that your little man gets the care that he needs.
ReplyDeleteNo, it's not Scottish Rite... but that's my next stop! I have my Dr filling out his part of the paperwork. I've heard great things, and I have a feeling that's where we belong! We are in Houston, but if that's where we can find the best help, the travel will be worth it! Thank you for your prayers!
ReplyDelete*hug* Does he do okay with avocado? (maybe thickened avocado) It's full of healthy fats. Definitely keep with the breastfeeding until you get some answers about his solids issues. You can try taking marshmallow root supplement, it's supposed to increase the fat content of your milk, too. He might like salmon occasionally- it's a good brain-healthy fat as long as you make sure that it's not a variety known to contain a lot of mercury. Thickened whole milk yogurt might also be helpful if he's okay with dairy.
ReplyDeleteShriners? Is that an option?
ReplyDeleteThank you all for the support. I'm looking into ALL of my medical options, hopefully I can pick and choose the best from each group! Wouldn't that be great!
ReplyDeleteThanks for the advice on Marshmallow root... I'm totally buying some! There are so many good things about it that J could use in addition to it making the milk better (bladder/lung/reflux). We have to avoid latex and Avocado because it's in that same family of plants. We also like coconut oil for good fats! Yummmm!:)