Special Needs
realisticdreams
member
Booooo.
realisticdreams
member
So our craptastic week has almost come to an end (only to continue into next)
Tuesday was our wheelchair eval and it was actually awesome. P was clam and quiet and didn't interfere with the discussion aspect of it that she had no interest in. They had a little car that was like a wheelchair and it took her 2.3 seconds to be able to use it and figure out how to turn.
Today was her urodynamic study and it was awwwfffuuullllll. The uro is consulting with her neurosurgeon and a neuro-urologist (I didn't even know that was a doctor!) to see what they think. Basically her bladder is Fed again and it isnt' as simple as just a neurogenic bladder (ha..) but cathing may be the answer again. Who knows, but she was also concerned about her spinal cord even though an MRI a few months ago was clear.
I hate the unknown. I feel so sorry for her but I try so hard not to tell her that i'm "sorry" about any of it. I did figure out a way to explain it to her today, that her "buttons" which work her pee, etc were a little messed up when she had her spinal surgery and that's why she has trouble, etc.
Still sucks! The older she gets the harder it is to see her so miserable, angry & upset.
Tuesday was our wheelchair eval and it was actually awesome. P was clam and quiet and didn't interfere with the discussion aspect of it that she had no interest in. They had a little car that was like a wheelchair and it took her 2.3 seconds to be able to use it and figure out how to turn.
Today was her urodynamic study and it was awwwfffuuullllll. The uro is consulting with her neurosurgeon and a neuro-urologist (I didn't even know that was a doctor!) to see what they think. Basically her bladder is Fed again and it isnt' as simple as just a neurogenic bladder (ha..) but cathing may be the answer again. Who knows, but she was also concerned about her spinal cord even though an MRI a few months ago was clear.
I hate the unknown. I feel so sorry for her but I try so hard not to tell her that i'm "sorry" about any of it. I did figure out a way to explain it to her today, that her "buttons" which work her pee, etc were a little messed up when she had her spinal surgery and that's why she has trouble, etc.
Still sucks! The older she gets the harder it is to see her so miserable, angry & upset.
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned
DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3
http://justthetipblogg.blogspot.com, The Neglected Blog.
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