We are here to spread love and awareness and to teach that being special needs is nothing to be sorry about



So today we were supposed to go to LA for her 24 hour EEG... We were on our way when we got a call saying that they needed to cancel it because the tech that does all the wiring isn't in and they will have to call and reschedule...Its super frustrating because Harlow has been doing some things lately that arnt seizures but they are kinda making us un easy and we really wanted to talk to them about it to reassure us. So now another waiting game as usual. Its really hard living in the unknown I think thats the hardest part of all of this not being able to be prepared or make a plan or have a idea of what we are going to be dealing with the rest of our lives. There is so many different things that come with her diagnosis and other babys/ kids who have what Harlow has have such a wide range of conditions so its not like you can even go off of them you just know somethings not right... its very very hard...So on to other news Harlow has been fussy for a little over a week now cus of her digestive system and being backed up. Its really hard to see her this way and theres not a lot I can do I have tried all the over the counter safe stuff but its just gunna be once we see the pediatric Dr. and what she says. Thankfully its on Wednesday so only one more day of this. I know all babys go thru this but its hard when she gets super worked up because she starts twitching and I get worried she's going to have a self induced seizure or something. Having a kid with unknown problems is worse then knowing what problems your facing I swear! On to good news, Her eyes are becoming more in sync with one another which the dr said means they are getting stronger so keep the prayers going who knows maybe her nerve is growing an so is her vision. Her hearing appointment isn't till December 5th but I know she's not deaf she gets spooked at to many noises for it to be vibrations in the air lol. She's been grabbing a lot more found her face and put her hand in her mouth she can lift her head and when we stand her up she tries to stand on her own so much for being 3 week old kid...shes able to keep her binki in all by her self now tummy time is her least favorite hobby because she's like me and doesn't like to be confined she won't let us put her on our shoulder to burp her ether so I skrued my self on that one by giving her those genetics. Lastly she's so much more alert and we have been able to up her feeding a ounce and she is still hungry every 3 hours which I'm ok with just the fact that she knows how to eat out of a bottle is a big deal for us so bring it on sister! As for me and bobby it was his birthday this passed weekend so we were able to go to dinner for it on Saturday and leave her with my mom it was hard but we both knew we needed to get out. Welcome to the parent life... but I'm ok with it even with my postpartum and not wanting to be around her all the time there is no where I would rather be, Its a big angel and devil on each shoulder for me. It usually doesn't kick in till about 3 pm so I soak up the mornings. Surprisingly she's been sleeping thru the nights we have to wake her to feed her (knock on wood)