BLIND BABY: SEIZURE VS TREMOR. EEG results. 

He is too cute for words! I write the side captions. Every now and again Josh will give me some ideas though!

yay! thank you for binge watching! I'm honored that my videos were worthy of that attention! My husband isn't blind and I feel like he would fit in with those blind adults... he's always knocking and feeling different materials and commenting on how their made haha. Thank you for finding the normalcy in our life! Happy, healthy vibes to you!

Makes my heart so happy when I get a reaction from him like that! Thank you so much for your well wishes for our family. I think we are all doing a lot better with our individual health lol. It is certainly a hard balance of work, motherhood and family, but very well said that we need to give ourselves grace... your last comment means a lot! Thank you so much!

We also got CVI after a brain bleed and spinal fluid drainage... it is very heavy to go through this. It will get better, for sure. Just love her, and breastfeed her if you can. I prayed, and God helped us.

YES! I remember you! Quite the hardship to go through. I had no idea that you had to have her in an induced coma (or maybe I read over that part previously). It is such an uneasy feeling. Even now after getting an answer I can’t help but feel like I want a second opinion. Seizures are obviously nothing to mess with. However, I’m also doing my best to put my trust in our neurologist as a specialty to doctor to be able to see a video and make a judgement that he will be okay until our next appointment. BUT that doesn’t make things an easier. “Wait and see” has been the HARDEST part about being a special needs family. I hope you can get on a call list in case any appointments open up so that you can be seen sooner! Luna will be in my thoughts, please keep me updated! All our love back at you!

@@LifewithNorrieDisease I ended up firing our neurologist cause I sent him a video of what Luna was doing and he said it was nothing. I kept calling and kept being told it was nothing. Right after I left that comment I took her to the hospital and it turns out Luna unfortunately has Infantile Spasms. After several EEGs and hospital stays and two medications so far,(ACTH & vigabatrin) we have another EEG and neuro appointment Friday. She's still having the seizures/spasms but the vigabatrin seems to help, but she definitely needs a higher dose so I'm hoping we get that done Friday and the EEG shows some improvement in the hypsarrhythmia! ❤

@@LifewithNorrieDisease if your gut says to get a second opinion, definitely go with it! I am wishing and hoping nothing but the best for you guys!!!

@@jezebelgrace4312 Oh my heart goes out to you. What a difficult start to sweet Luna’s life. I’m so proud of you for sticking to your mom intuition and looking into her spasms. I’m so sorry to hear that it was confirmed as infantile spasms. I know how scary the thought of that was for us so I can only image what you are going through. I will be thinking of you and really hope that the medications improve her symptoms! Please keep in touch with her future EEG and how she (and yourself) is doing while going through all the exams, results and waiting. ❤‍🩹

Thank you! 🥰

Thank you so much!!

By the way, this little story here gave me a lot of comfort ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE--aa4YC-ybcU.html

Thank you so much! Awesome educational information! Makes sense that since he doesn’t have visual stimuli that the brain would adapt to using that space for other sensory information. Thank you for the love and support! 🤗

@@mariyamagdalinakovacheva5030 Very cool story! It’s always nice being able to come back to a story like this when you need a little extra comfort or inspiration. (Plus I LOVE Greece)!

Thank you so much! His smile and laugh are two of my most favorite things!! I think the hair loss definitely subsided around 7 months postpartum. And the regrowth (now at 15 months) is so annoying and crinkly lol But the recent stress caused more to fall out 🙄 but hopefully we are past that too. I never knew how much hormones influence your body until after having a kiddo lol

thank you!

Thank you so much. We appreciate all the love and support!

I’m glad it sounds like your grandson doesn’t have seizure activity that is great! Our doctor calls the tremors “infantile gratification syndrome.” Basically babies that are in diapers or sitting at the high chair (typically) get a pleasure response from their genitals rubbing on the diaper or high chair. This in return makes them tremor, pant and or grunt. I think they are suppose to grow out of it. If the kiddo doesn’t stop shaking when being picked up then it could be more seizure related. I hope this helped.