SMA RESULTS ARRIVED!

And this is the 24th week with 1 day!

And the baby has a SMN copy, which means that it may be a carrier but it is SMA free! Yay! No wonder it has been kicking so much lately! LOL Well, this is happy news, hopefully things will keep on this way.

I'll just keep leaving everything in God's hands!
Amen!

Amnio results arrived, still no SMA results

This is the 23rd week (and 2 days).

So far, so good. Last week's appointment was OK, no news. Got a call today from the geneticist. The amnio results arrived, and everything in baby is fine (no espina bifida or any other defect), so we just need the SMA screening. But the results for the SMA testing are not ready yet, and may take another week to be ready. So... another week to go... At least my blood FINALLY got to the lab, third was the charm. :D

AMNIOCENTESIS DONE

Baby is 19 weeks with 3 days right now. Here's a picture of baby after the amnio:

Well, after much debate, hubby convinced me to do the amniocentesis. It is true, it is better to know if there is something we should know and not to worry about a percentage that can apply to anything (like falling in the tub, for example). So... went to the date on Monday and the amnio was done. Less painful than I thought but quite bothersome. It did gave me fever afterwards ( I always must have something, right?).

OB/GYN clinic date on Tuesday. Baby quietly sleeping but heart beating. The next appointment was changed to 3 weeks, and met a stem cells specialist that definitively encouraged doing the cord blood and placenta banking if new baby is SMA free (so it was a good idea to actually do the amnio after all, we didn't thought of this). The doctor let me know that when results arrive is that we should make the decision, and then they have to train the staff for doing this as they haven't done it in the hospital (I found it odd, but it is a trauma center after all). The stem cell lady wants to be updated on whatever we find that is real about SMA treatment outside US, she emphasizes bewaring of hoaxes (which we already know).

Next date is on Friday, for an in-dept sonogram.

Right now I'm sick, the weather changes are too much. There is snow outside, and I can't breathe well... sinus killing me, sore throat, fever... It sucks. I keep wishing for sunny beach days...

A New Mage in Our Family

Yes, the little mage will have a new sibling and so... a new blogging space appears! Who is the new mage? Hopefully we will get to know soon. In the meantime, here I shall write about what is going on with... it?

FIRST PICTURE 11/16/2009
Here's the first picture (sonogram) of our newest addition to our family, at 7 weeks:

This little entity of chaos has been making itself present by endless nightmarish nausea, draining every bit of energy and driving doctors nuts with its continuity of what if spells. :P What this all means? Well, mainly that mommy is a high risk pregnancy test rat, and so doctors of all kinds have been probing her for illnesses that... really, are NOT there. Guess being 36 makes mommy a... mummy? The big concern is the 25% chance of the new baby having SMA, but we are hopeful for the oppossite. Whatever happens, it will be loved no matter what, just like big sister Deirdre.

SECOND PICTURE 1/05/2010
Well, the Three Kings delivered the certain news through this new sonogram:

So far we have thought of two names: If it's a boy: Lucian Salvatore. If it's a girl: Callisto Beatriz or Callisto Angelique or Callisto Victoria...

It's been as hard as Deedee's pregnancy, in terms of the high control of diet so the blood sugar stays at bay. But here doctors are completely insane. They want my sugar between 80-110. I test myself 5 times a day to that purpose. At least the nutritionist was very happy with the way I eat, and very surprised that I DO EAT A BIG AMOUNT OF VEGGIES. So the main change was basically no mofongo every week... Can't have rice (not a big deal, I hate rice), controlled beans and corn... Meat is no problem, veggies are no problem... And thank goodness for sugar free Cool Whip and Jell-o.

I wish that we were back in Puerto Rico. This place is just too cold. I feel cold in my bones. Being 20 degrees, adding windchill to that, is NOT funny. But, we are stuck here for a bit longer... Hopefully we will be able to move to Florida sometime in the future. We know that PR is out of reach until Medicaid and doctors make sense... or until I have millions so I can have a private jet for emergency outings to take Deedee to the right professionals... It's a shame. The island has it all... A big shame that they don't open their eyes and minds to the Non-Invasive ways. Tracheostomy should not be the only option, period.

So... Waiting to see what happens next. On December I had a fall thanks to slipping in the snow, and ever since I have continuous headaches... Migraine every day. Can't do much about it, although I do have a neurologist appointment for April... but must wait after birth for an MRI...

Geneticist is pushing the "doing the amniocentesis" issue, and although I said yes... after a failed attempt last week I feel I should not do it. Why risk the fetus when after birth the baby can be tested for SMA? We are still gathering information about it, as I want to be certain of things. The new amnio date is on Feb 8th... so I have one more week to decide what to do.

And so, I visit the OB/GYN clinic weekly, as they have me closely monitored. Between my doctor appointments and Deedee's appointments we have quite a full schedule! I'm tired all the time, and get a bit sad as it is only daddy, Deedee and me... And it is all overwhelming. The high stress that we already have is increased by debt collectors and by uncertainty of what are we going to do in the big picture. But... The show goes on. And this new mage has a big task ahead!

I'm looking for the blood cord banking and placenta banking, as we HAVE to do this... For Deedee, for the new baby, and even for us. We need to keep stem cells as they are the newest alternative for treatment and hope, and we also know it is a pricey option... Another thing to add to the stress... but it must be done.

And that is the state of our union...

May God keep sending us blessings and miracles.