We saw the new neuro today that our neurosurgeon (NS) wanted us to see. I was so scared that she wouldn't be amazing, and she had an extremely long wait, so I had put all of my hopes and dreams into this doctor.
I thought she was very thorough and very good. She wants to do the EMG testing, which we knew we would need but she performs it herself AND she uses sedation, so win win. However, she is only doing very little outpatient neuro (she is doing more palliative care) so we likely will have to wait until February for the EMG testing to take place.
She is going to look over Ps most recent MRI with our NS to make sure they took good views of her pituitary gland tumor because she is wayyy over the 100th percentile for weight and she just.keeps.growing. She has some other labs she wants to do as well, but said they will draw during EMG to save her a poke.
She was able to get a small amount of reflexes from her, and says they are consistent with those of patients who have Ehler Danlos Syndrome (did I tell you guys we just found this out?)
M goes to genetics next Monday for her EDS eval (i'm pretty sure she has it too--yay..not..)
So here goes our crazy life, again. I guess. Our next new doctor is rheumatology, the day before Christmas, more yay.
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