scare of the unknown

I waited so long for somehow genetic results to tell me something... to walk in that room and be hit in my face with some huge medical term and then swallow it and have a plan and move on... But that wasn't the case... I described my morning like in a cloud, i haven't slept since may 3rd, i got ready, took my blessed rosary from my hometown church,my grandmother's ring to feel home close to my home, worn my waterproof mascara, took my anxiety pills and follow the yellow brick road to OU children's... and the waiting started.... 1 hour went by, 2 hours went by, not to mention missing my other children's gymnastics awards, they were so excited about, and my husband complaining of how much work he was missing... it got to the point that i just wanted to leave that room and my life, pick up my kids and just go home... and the door opened...

The moment the dr. walked in without opening his mouth I knew there was no answer, he went over the long list and talk and talk and talk... at that point i space out, spinal tap, more blood test, urine test... my biggest fear of not been genetic and having to do with his brain... so he examined lorenzo, and found that his Spleen was swollen, something maybe caused by infection etc.. so there we start one more stressful road.... for the last few days, i watched lorenzo experience maybe seizures, but lets be honest my house is not a spa retreat is noisy, is crazy, so.... i thought he got scared or stress... but after physical therapy last tuesday and the Dr. at genetics both saw it and is in fact seizures... ONE MORE OPEN DOOR with no answer.... so maybe this is happening since birth? maybe this is causing the hiponotia? maybe he got epiletsy? I don't know I'm exhausted, and some how need to manage to act and keep it together for the sanity of my family.... so next step.. first i need to videotape an episode of the seizures to show neurologist on monday's Appointment.... follow by visiting the lab and do all this blood work, and somehow still be a monday with three kids at school & the last week of school.... not to mention finish painting this room, and the normal weekend activities...

FYI, when your 11 weeks old baby does have a binder with all his medical records, that can't be normal... so here we go one more week... but he still is a sweet baby, sleeps the night, eats, talks like a sweet baby :) God Bless him!!

A big puzzle

Lorenzo is 11 weeks today, he weights 14lbs & is 24 inches long.... big "healthy" boy.

I have waited 9 weeks or so, for genetic results, and finally the date is here, friday, i must confess that at this point i don't think it will make a difference to know what is wrong with my child... My mother's instinct tells me there is something odd about him, besides the hipotonia... I had watch lorenzo all day long, and he seems to be experiencing seizures episodes, on top of everything else with the low tone...

My life this days is non stop running around with the kids and of course non stop dr. appointments with Lorenzo, even my dentist called & sadly there is not even 1 hour of time for me to go see him... i feel like i'm still trying to catch up, all i want is "normal" but is hard to tell what "normal" is this days for me... I went home the place that makes everything else fall into place, i felt at peace... I described going home like a breath of fresh air, is my language, my food, my people, and there is the ocean, what somehow balance my emotions and keeps me calm.. i'm glad i did, because i was at the edge... i couldn't focus, my patience was so low, now i am better.... starting to fill the bottle of emotions again... so here i go in two days, genetics answers, maybe that will give me at least a few pieces of this puzzle...