tag:blogger.com,1999:blog-8581317431133132518.post2326828584010337840..comments2023-07-25T06:31:22.641-05:00Comments on Jude; The diary of a baby and a stroke: Neuro appt!Jennifer Ortizhttp://www.blogger.com/profile/14350225247489608653noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-8581317431133132518.post-73493169158840619942009-01-28T23:02:00.000-06:002009-01-28T23:02:00.000-06:00Dont you love the doctors who just dont seem inter...Dont you love the doctors who just dont seem interested? I dont know what else to say, was there a second doctor you were going to see for his neuro appt?? Or was that a different one???The Wacky Whittonshttps://www.blogger.com/profile/11313764358011592310noreply@blogger.comtag:blogger.com,1999:blog-8581317431133132518.post-77618576615739822462009-01-28T21:39:00.000-06:002009-01-28T21:39:00.000-06:00Hey Jenn!I finally joined the Blog band-wagon...an...Hey Jenn!<BR/>I finally joined the Blog band-wagon...and now I can leave you messages! Anyway, glad the appointment went well. 2 cm is A LOT!! I can't wait to see all the other ways baby Jude surprises those Dr.'s. You're a great Mommy.<BR/>~Jocalynjocalynhttps://www.blogger.com/profile/07313874191250865765noreply@blogger.comtag:blogger.com,1999:blog-8581317431133132518.post-45688940870490711312009-01-28T19:20:00.000-06:002009-01-28T19:20:00.000-06:00I have been following your blog for several weeks ...I have been following your blog for several weeks now. You have a beautiful family and I am amazed at the care your hubby gives Jude. I am the mother of twin girls. My girls are seven years old. They were born at 26 weeks and Kylie had a intravintricular hemorage. Grade IV on left and a grade II on the right the dead tissue has formed a porencyphalic cyst. Basicly a large cavity in the brain. She has cerebral palsy and some of the other complications of the brain bleeds are hydrocephalus, seizures, optic nerve damage, and feeding complications. She has a feeding tube but is eating by mouth now and learning how to take liquid by mouth. She did not require a feeding tube until just before her second birthday. She just gradually stopped sucking so we had to do something to get her nurishment. She had her first seizure two months after her second birthday. Her smiles are amazing and her eyes are full of life. I guess my point of contacting you is that one of the seizures that Kylie has involves her screaming. It is a scream as if she is terrified at what she is seeing and screams in horror when I touch her during the seizure. She most recently started to have absence seizures. I read about these cries that Jude has when he is seizing. I have never been able to find anyone that described anything close to what Kylie does. I am just curious about these screams. They baffle me. <BR/>As for the post today. We went for a second opinion from another neuro because her neurosurgeon suggested we get another opinion after her last EEG. She is having continuous seizure activity showing on the EEG. Her current neuro told us that if we ever were to get a second opinion that the dr would probably suggest surgery to disconect part of the brain causing seizure activity but he would not suggest we do this. He however offered no solution and did not up or add new meds. He has done a great job with her for years now and I just trusted his opinion. When her neurosurgeon showed so much concern I reluctantly agreed to a second opinion. Guess what we were told at the new consult? New neuro suggested surgery but wants to do more extensive testing and a new MRI. This is not scheduled until March so I am just trying to wait and consider things after the results from 48 hr video EEG and MRI. We expect to get clear and accurate forms of treatment for our children but more times than not we leave even more clueless than when we went in. I think I will go for a third opinion. Two different forms of treatment for the same medical condition from two different drs is just hard to wrap my mind around. How am I to decide who is right. At the appt with the new neuro I went in with a page of questions and left with more questions than I went in with and very few answers. I just wanted to share instead of just reading. Enjoy those smiles from Jude. <BR/><BR/>Vera Spinks<BR/>my email is bvakspinks@yahoo.com<BR/>Tuscaloosa, AlabamaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8581317431133132518.post-55106104250543654602009-01-28T17:30:00.000-06:002009-01-28T17:30:00.000-06:00I think sometimes Doctors arent sure of some situa...I think sometimes Doctors arent sure of some situations themselves and dont want to sound like they dont know what they are talking about. I think that if they dont set high standards then everything they do is a huge acomplishment. You on the other hand set high goals for Jude to achieve. And I think he will amaze you by reaching those goals. Someone told me once, not to treat Kayden different than I would my other child and to start setting goals for her. Even though she is behind, she will still meet those goals and Jude will too !Marahttps://www.blogger.com/profile/04563700024635392662noreply@blogger.com