Monday was such a rollercoaster of emotions. meeting with the neurologist is so nerve wracking and I didn't even go in to the meeting. Thank goodness for bobby and my mom and Bobbys mom because between the 3 of them they were able to get all the answers we could ask for with in reason. The diagnosis that Harlow has is 1 and 11 million its so rare so there isn't very much to go off of. Everyone who finds out that their baby has this aborts their baby so thats why its so rare. So she told us that its up to Harlow, Harlow is going to be the one who is going to tell us what she can and can't do all we can do is help her along the way. Therpy Therpy n more Therpy which is fine by me I hope that she's able to take all the tools we give her and prove to us all she's just like her mom and dad tell us we can't do something n we will prove you wrong but she's got both of us in her so she's got it 2 times as bad to show people whats up!
She's such a fighter already, the last 2 days she's been more like a baby then I could have ever asked for not drugged up not disabled just a new born baby although she doesn't cry but she does do a silent pained look which I kinda feel like I would prefer the crying because its hard to know what she wants or needs. I just try to absorb all the baby stuff she does because I don't want to look back like I do my pregnancy and have it robbed from me. My pregnancy was so horrible because it was so high risk and always bad news and all the stress test and all the needles and blood draws. It was almost IMPOSSIBLE to be able to embrace it and be happy. Don't get me wrong it is all worth it regardless what we are going thru because I look at her face and just love every inch of it and know we made that from scratch and she is made from nothing but love.
Today however was really hard because it was her eye Dr and tho they had told us she was blind at the Nicu she also was 4 days old. So today we found out that her optic nerve isn't fully developed its the part of the eyes that connect the eye to the brain to make the connection of what you are seeing so even tho her eyes are developed it doesn't mean much if theres no connection so they said she can see shapes and shadows and at most the big E on a eye exam but unfortunately glasses won't help and there is nor surgery she can have. They said they have seen it happen where one or both eyes just develop so there isn't no hope but he said its very rare. Harlow is very rare so I am hoping and praying that this will work in her favor and magically develop I have faith in her to prove us all wrong yes but at the same time this is her body were talking about if it doesn't develop it doesn't develop its nothing we can make happen its all up to her body. So yea it was a rough morning BUT we did find out her " eye twitching" that the Drs sworeeeee was her having a seizure is actually infact her newest eye diagnosis not seizures we will have it confirmed on Monday when she goes in for her 24 hour EEG This doesn't mean she will never have seizures seeing her diagnosis with her brain says she's prone to having them but this does mean that she hasn't actually been having them so the meds they put her on that made her higher then the heavens was not needed so we were right! Its nice to know we were fighting for something that we had a gut feeling about and it came out that we were right. We got that parent intuition I guess lol. So there was a plus to todays visit. Now we have to get her enrolled in a place in Santa Ana that works with blind kiddos to help them learn right away so that she doesn't have trouble when she is 5 trying to figure it all out so she will just have to learn different from day one.
Im learning that Harlow is just going to have to learn different which is fine by me but its so hard because as a parent you just want to give your kids the world. All of this has been so hard to take in its one hell of a pill to swallow .. some days are fine others are hard I feel this is my new normal...