March 4: Moving On...

Can you see the little translucent heels to finish the ensemble off?  I'm in trouble...

Heaveno!

Thanks again to all those who have sent us good wishes for the rest of Angelique's pregnancy!  It means a lot to us, as this is obviously an exciting, but also extremely nervous time for us.  We have really grown close to you all through this incredibly intense period of our life.  Again, all I can say is that we were not trying for this, and as one person put, the fact that we were even capable of conceiving under the stress of grief (this was back in November mind you) is beyond a long shot.

Regarding the increase of negativity in the comments despite me asking people to please respect our request, I am blown away.  I shouldn't be surprised I guess.  There are people who seek to drag you down no matter what level you try to rise to.  Us?  We're tryin' to rise above the death of our daughter.  We're tryin' to raise awareness of EB.  We are tryin' to fund the work at the U of M so that 10 years from now, no child ever has to die from this disease again.  I am tryin' to write about our journey as openly as possible so that others may find some insights or inspiration in what we do with what we're given.  This is what we are up to.  Anything else is your story, not ours.  So, thank you to for those sharing about the different comment requirements.  No more anonymous commenters.

To the person asking about the amnio, great question.  The reason for the amnio is so that if the baby does have EB, we can plan the C-section to be safer than it was for Bella.  They pulled the skin off her armpits, hip flexors, and left buttock because the delivery team was wearing dry gloves.  We'll also be able to have the EB NICU nurse scheduled, we'll be able to pre-order wound care supplies... we'll be ready.  If the baby doesn't have EB, we'll be able to breathe easy.  Either way, we will best prepared for the baby. Also, between the CVS and the Amnio, the amnio was recommended as a less invasive, less chance for complication from the procedure.  I think if someone was going to abort based on the results, an earlier CVS is a better choice, but if someone isn't, the amnio is safer.




Daddy's fabulous socks of the day!  Rock on!  I know, I know, very sexy.


Another good question asked was if we would go through with the stem cell transplant again.  Good question.  We wouldn't go through with the same procedure Bella went through, meaning, we would wait till he/she was a little older (under 2 has NOT been an ideal age at all to this point).  Also, I know that Dr. Tolar has proposed a new chemo regimen in light of the complications to Daylon, Bella, and Elle.  I pledged to raise this money for the Drs. about 7 weeks before we found Ang was pregnant, but it makes it that much more personal if we do have a child with EB, because the sooner Dr. Tolar has the funds, the sooner he can move forward with the next THREE versions of the treatment he has already conceived.  He is literally just waiting on the funds to put these next versions to the test in the lab.  First, they need to be tested in the lab, and if successful, can then be administered in the hospital.  These next steps, PARTICULARLY steps 2 and 3 will EXPONENTIALLY reduce the level of danger to the child.




Lucy with Ali's skirt and Bella's Arsenal Bear... looking less than thrilled by Ali's staging...


I can't remember if I shared this or not, but in Bella's 100 day biopsies, they not only biopsied her skin, but also her mouth and esophagus.  They found anywhere from 3-24% of the skin to be Ali's cells.  That means in certain parts of her body, 1 in 4 skin cells were already Ali's.  This is so promising and yet so heart breaking, because it shows that the transplant worked.  It's not whether the procedure works or not, it's whether the child can evade the dangers of the chemo.  In the newer transplant models Dr. Tolar has proposed, the amount of chemo necessary is sooo much less.  I look forward to that day for ANY family.

In the meantime, we do as much as we possibly can.  We love each other, we love on Ali, and we love our new baby in the belly.  Like me or hate me, I have a big mouth... but if you want the world to turn its collective attention on a little-known but breakthrough stem cell procedure in Minnesota (and NO - NOT at the Mayo - you wouldn't believe how often we get that) you gotta make some noise.  I've known all along that there is one thing that I will have to learn to deal with which is other people's opinion and criticism of how I go about helping fund the safe treatment of kids with this disease.  I still have much to learn, and every pot shot taken at me still hurts, but I'm not gonna stop being me.  All I know is that when I die, and I meet Bella again, I'll be able to say I never gave up.

God night.