It's about 530 in the am and this sweet baby is restless which means I am awake. How precious is it when he is half asleep, I hand him his comfy and In his super sleepy voice with his eyes closed he says "ta you"?
I could work out or I could blog. Seeing as it's been a while since I've worked out and I need to be able to move today and the next few days, ill blog.
Been working some with potty training and I'll post pics of that soon.
Yesterday was a pretty down day for most of it. Some days it is just harder than others to be thankful for the progress. Every day I am thankful we have a God that knows my true heart and knows I am always thankful, even on days I take a FB quiz that says I have a black aura. My aura might have been black but deep down I'm still thankful! Haha
I can't help but get upset with myself and therapy at times. Since switching outpt therapies and letting them work more in his mouth he has made some big improvements with eating. Last week he ate some hamburger, bacon, taco meat, lunch meat, pretzels, chips and I know there is more I'm forgetting. He has actually taken bites from a spoon from me more than once. I am very thankful yet frustrated that we or I made the choice to stick with our previous therapist for two yrs when she refused to let anyone work in his mouth. All she wanted to do was cut back tube feeds. Did I mention all of that eating was without cutting tube feeds?!?! So basically those feeding trials I was doing in which I cut tube feeds in order to make him eat were pointless. Had I not done that would my sweet boy not be underweight? Would he actually be on the growth chart? Would I not worry about him getting picked on bc of his size? Or not being able to play sports or his brain development bc of nutrition? Current therapist are telling me that at this point and the point he was at before his oral eating is not tied to making him hungry. So I didn't have to starve my kid for nothing for two years!?!? It's like I want to be able to tell every mom that has a tube fed kid, It's not always time to cut tube feeds, look at what my kid is doing without cutting feeds!?!?
How can a mom not be thoroughly ticked off over that!? Perhaps later we will cut feeds but we've a bit to go and we certainly weren't ready the two years we tried it. I am anxious to make progress and see if he needs another swallow study, especially for drinking. Seeing improvements with food but not the drink still. Although I guess I am a little. Five drinks out of thickened apple juice last week (or was it the week before?). He let me and the dietician spoon feed thickened juice and choc milk yesterday-amazing.
I am going to pray about it and there are a few questions I need answered first but I'm thinking about switching up therapy again. After dealing with the same therapist for two years and now having two years of regrets I am def more inclined to switch things up. Some weeks we have three therapies and one appt with the dietician. Every other week that happens. Every week we have at least three appts. We have some follow ups in May to add to that as well. Idk if that's the best thing for me or him. Would never get rid of the feeding therapist or dietician. Just gonna pray on some things.
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