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...

8 weeks old...

Lorenzo is 8 weeks today... can't believe how fast time is going... We started to do more things at physical therapy and hopefully he will continue to improve somehow, it is very hard to sit there at watch... His therapist is a great person and i know he sees right thru me somehow and in someways he works on my mental health also, as we worked on Lorenzo's exercises... We are anxious for genetics results, and May doesn't seem to be here fast enough... Even so I know genetics won't change a thing at this point, there is no magic pill, or magic medicine that will cause my sweet baby to don't have this and be somehow "normal". I'm a pretty much a ROBOT, no emotions, everything is going to the "deal with you later" cup, and i must confess is getting full(so don't be surprise if i just snap out of it to put myself together soon)... All my energy is going towards my garden, renovating my kitchen, kids activities, working out, cooking, cleaning, ... so, if you are reading this and ask how my baby is doing (he is the same), i will probably give you a very cold high energy respond, because the true is I haven't deal with absolutely nothing about my feelings since he was born... soon enough everything will caught up with me and somehow acceptance and understanding will make me see the path i shall follow... as today all i see is TO DO List, i will continue to exhaust myself till my brain stops thinking...

7 weeks old

Is Hard to Believe Lorenzo is only 7 weeks old, I feel like is been a lifetime... Last night he slept 6 hours straight, Lets hope this is a new routine, i need to rest... I must confessed feeling physically and emotional exhausted is taking a toll on me and somehow I must find a way to overcome all of this...

Yesterday was our first Physical Therapy section, i was a little nervous and didn't know what to expect, with an open mind and heart my little koala and I arrived to one more unknown experience... Our first appointment was great, i learn about a whole community of children with Hypotonia, low tone and too much tone, watched a video of a little girl who is currently 7 years old who started physical therapy at 8 weeks old, and today she is a cheerleader, very active, "normal" kid. I'm looking forward to meet with parents with hypotonic children and learn more about this "symptom" yes, it is a symptom not a illness or disease, the doctor confirmed that his legs and arms are both in great shape, and we need to work on the trunk of his body and head control. I learn a few exercises to do at home, till our next appointment next monday, so far we are only meeting once a week, after Lorenzo is three months old, we will start our two days a week section....

so what does it take? PATIENCE!!! I'm going to learn somehow to deal with the waiting game, because this is what is all about... everyday is going to be a challenge, every step Lorenzo takes is going to be a milestone, due to hard work of his part, me & the entire family... there is no plan or expectation.... so here we go dealing with the unknown...

Running against the clock...

Today was one of those days that you don't seem to get caught up... I feel exhausted, kids slept in, it was picture day and the meltdown in the morning almost throw me over the edge, not to mention the "new" routine my older boy does at drop off, he just starts this screaming fit, and runs away... and yes i am the mom that just walks away, he literally is fine in 5 seconds... Well now is 9:05 a.m.... Me & Lorenzo are heading to Children's Hospital, after 32 minutes of trying to find were to park, and trying to understand the new construction, we finally found the valet parking and yes we are in the building, and I must confess, tax money, grants, whatever it is funding this place, looks like is doing a great job, new building looks awesome... so.. i'm happy & impress, Lorenzo and i keep following the yellow brick road to cardiologist in the third floor... and then just like the house that felt into the wicked witch, the desk lady saids those famous words, I'm sorry we don't have appointments for today, so can it be? again? miss communication? i thought i called two days ago to confirm.. am i going crazy?... But no it wasn't me, the cardiologist works in both hospitals, and today been thursday, he is working at Mercy... so somehow i must get my car back, drive all the way there and make it on time... it is 9:50 a.m. already.... sooooo here i am again in the tornado of stress and anxiety... drove to mercy, in lights speed... found the office, check in been aware i am 32 minutes late... and now i sit and wait, and wait some more, and some more...exactly 2 1/2 hours...

Lorenzo had an EKG, and an echocardiogram, both thank god seem normal, the doctor was great and even so the stress of watching your baby with all of this wires and stuff, really gets to you, after that kind of morning and feeling physically and emotional exhausted.... when he said i don't need to see him till 6 months from now... the tears of joy, starting to fall down my face...and of course i get the look of OMG this mom is over the edge from the nurses, but who cares...

What is the next step? the big ones, Neurologist & Genetics both in MAY.... now lets get physical therapist started.... so i get the impression long day on the phone tomorrow... I wish i had an easy button for all of this... :)

Six weeks old today...

At Lorenzo's checkup today he weight 11lbs, 3 ounces, and he is 23 1/2 inches long. His Pediatrician thinks he is improving by been more active, alert, holding his head for a few seconds and moving his head towards voice, he is responding to light and sound... His lower body feels more toned that his upper body, something we already knew, he is grabbing stronger with this hands, but the trunk of this body still is very low tone... She described Lorenzo to me like a tree, still got roots & leaves, but the trunk of the tree needs to be strong enough to support it.... So yes, it killed me inside.... we talked about our future appointments, cardiologist is coming up this thursday, Neurologist & Genetics, in May... She doesn't want me to wait any longer on sooner start for physical therapy, she's referring me to a private physical therapist, ASAP... we are aware that our insurance won't cover all of this, so i am hoping is not more than we can chew right now, our medical expenses are getting off the roof... she recommended for us to use both private & the sooner care people at home, if they ever decide to show up... In a more personal aspect she recommend it for me to include & get a little help with Lorenzo, support for appointments, bath time, etc... she thinks i'm consumed by all of this, by been non stop with him, alone soaking all of this & i know she is right, but how can you? my life was already a nut house, so you can imagine now... I get the impression my next 6 months are going to be pretty insane and guess what is around the corner? SUMMER!! and yes I love summer, but the thought of four kids at home but no place to go, and non stop doctor visits is freaking me out a little... Did i mention no flying for Lorenzo till he is 6 months... (a bitter sweet for me, because i can't wait to go home, my soul literally aches)... but as least we can drive somewhere... that is also something she recommended to spend time as a family, doing fun things to keep our stress a little in the low side.. she believes this stress and anxiety is hurting the other kids too... so lets work on keeping it together, better said than done, right?...

Physical Therapy... Headache

I've had a migraine must of the day, from dealing with insurance company, calling sooner start, doctors.... Is been almost three weeks of non stop calling to sooner start, the place we were referred to by NICU and pediatrician... finally they called back last thursday, I missed their call today and took me 4 hours to finally talk to someone, i can't believe it will take around 3 weeks to evaluate Lorenzo and to get him started... Do I sound like a neurotic mother? Lorenzo needs it and everyday we loose time... I thought the main goal is to help him? so, why everything takes so long?... I work at home with him for an hour a day in a few exercises, he is getting more active and even started lifting his head from side to side, from tummy time (6 weeks old).... I just feel he needs more... Looking forward to our Appointment tomorrow with our pediatrician, I got a list of questions this time... I hope we get neurologist & cardiologist visits schedule.... geez I'm exhausted...