So here it goes! Im going to start by bragging on my big girl! She did so good last night when we stayed at my moms house (she slept all night & even let Auntie Paige hold her & love on her...she even fell asleep with Paige holding her), on the ride to & from Duke today, & even did good during her appointments. Got a little rowdy twice, once when her neurologist was examining her & then when I went to change her diaper for the ride home...LOL! Chick has never liked having her diaper changed...ever! Sophies first appointment was for an electrocardiogram on her heart. This was a recommendation from her geneticist d/t a gene abnormality she had just to make sure her heart was okay. It was time for Sophies tube feeding when we went in for the ultrasound, but I decided to wait to feed her after the test. She laid on the bed & the tech had to get over 80 different pictures of her heart. Sophie did not make a peep once & let the tech do her job. While we were waiting to hear if the images were good so we could leave from that appointment, Sophie was making sucking motions with her mouth. She does this when shes hungry, but lately, when I try to put food in her mouth, she immediately closes her mouth & will not open. So I put my finger in her mouth and...she started sucking on it...totally surprised me. She also sucked on a paci for a little bit...something shes never really took to & something I never really pushed with her. Her heart was normal!!! So far shes had body scans, ultrasounds on her heart, stomach, kidneys & other lab work & shes totally healthy (other than the neurological problems)! Praise God!!! Her next appointment was with her neurologist. We discussed many things. Ive been concerned about possible seizure activity d/t the increase in her eye fluttering, jerking movements of her arms, & a zoned out episode she had on Halloween. He seems to think that the eye fluttering may be seizure related & that the zoned out episode was an absence seizure. But he felt that the jerking of her arms was more of a spastic muscle movement rather than infantile spasms (a form of seizures). He increased her muscle relaxer & in addition to the increase he made on Monday with one of her seizure medications, he also increased another one. He referred her to another neurologist that specializes in muscles (spasticity, etc.) d/t her muscle spasms & tightness in her legs. He thought this was a good direction to go in now to help with management of that (he also hopes that management of that will also help a lot with her increased agitation, restlessness, pain). He ordered her to have another swallow study to make sure it is still safe for her to eat & swallow since she has not really wanted anything by mouth lately (she will be going back in one month for that). We discussed repeating her MRI. She hasnt had one in one year. He felt that as of now, this was not something that he would just do just to see. If she had other, new neurological issues going on then maybe. But he didnt see putting her thru the sedation to have it done (her past experiences havent been great). He said that it would not change her current treatment because all they can really do until a diagnosis is obtained (if it ever is) is just treat the symptoms. He showed us the chart of her head circumference. It has gotten a little bigger with each visit, no major increases, but a steady little increase. He discussed that our brain is what makes our head/skull get bigger & he felt that her brain had to be growing (even if it was just in certain areas). He said that he was going to touch base with her geneticist again, to go over all the testing shes had done in the past year, to make sure nothing has been missed, because I had a question about a certain set of testing that Im not sure that she has had. If needed, she will have more blood work done on Monday when we go back Monday for her GI appointment. We discussed the little inch stones (instead of milestones--the small developmental things shes been doing lately--I stole this from some other mothers on Facebook...LOL) shes made recently & he seemed pleased. I think thats enough, dont you...LOL! Goodnight everyone! Us 2 chicks are tired!!!!!
Posted on: Thu, 14 Nov 2013 01:51:20 +0000