Since January Arwen has been having headaches and back pain so we have had many phone calls and gone to many fun doctor apts to try to find the source of these problems. Till today they just said wait it out. Looks like the beginning of a shunt failure but no reason to mess with a partially working one. Which I do agree with, but still feel bad that she is in pain most days off and on. Even if for a short bit. I put in another call to Neuro today since she is still saying her back hurts during most enemas and some cath times. We first talked to urology to make sure her back pain wasn't from bladder/kidney and they dont seem to think it is. So the next call was to bowel/rehab who had us to a 3 day clean out last weekend and since she has still complained of back pain so then we called Neuro to see what the next step is. The nurse said her shunt would not be affecting her back so it could be a tethered cord issue. The nurse is going to go over it with her Neurosurgeon to discuss if she needs another spine Mri. We should hear back tomorrow what their plan is.
We had our 2nd round of intense OT (occupational therapy) and feeding clinic bright and early today and thankfully she is well enough not to be on the NG tube... Praise the Lord! But of course they always throw a fit over something that we dont do inside their little box lol. She went from drinking 6-8 oz a day to 24-25 oz a day on her own which is a HUGE praise. The thickener and straw seem to be working wonders. They want her at 34 oz but I do not see that happening unless they do not want her eating at all. Since she has started drinking more on her own she now only eats like 2 meals a day and doesn't want any meat. But she is drinking and gaining weight at a good rate so I am a happy mamma. They think her eating changes could be from being a 2 year old, drinking more, and or her molars don't match up so it makes it hard for her to chew.
OT used vital stim (electrode therapy) again on her neck to help the tongue not rest on bottom and try to help her reverse swallow. She did move her tongue around enough for her to see she wasn't tongue tied, but she still stuck her tongue out a lot and has a forked tongue even with higher voltage. She also noticed her neck muscles around her jaw are really tight which she thinks could be another reason why her tongue kept coming out. Hoping weekly vital stim and upcoming speech therapy will help correct these problems. The ot did say even if they help fix the resting tongue she will need her pallet opened up more with dental work later down the road so that the tongue has somewhere to rest properly.
A lot of hard work ahead for little miss but we are thankful she is drinking more and praying the ongoing therapy will help her continue to move forward!
Thanks for checking in on our beautiful little girl :)
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