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Wow!  What a wild ride, if you didn't read today's post earlier...we woke up to the nurses saying the surgeon ordered a CATscan "Stat"...because of his chronic crying all night long (literally ALL night, except for 2 hours).  The surgeon came to talk to us, he said Cole's CT was clean!  They don't know why he is having such a hard time with pain...all though he was VERY constipated from all of the meds.  We tried EVERYTHING a few times, he finally went a little bit and is feeling better...once again I kept telling them that I thought his stomach hurt...and I was right. 
The surgeon also told us they biopsied his malformed lobes/brain tissue they took out, to find out if this was genetic (if we passed this on to him or if it was a fluke) was NOT genetic!  He said they don't know why this advice for women of child barring age...even if you aren't "trying" to get pregnant...make sure you take folic acid.  I only took it 1 month before...I don't know if my body just needs more folic acid, but if you do have a child with brain or spinal issues they usually give you extremely high doses of folic acid (usually 10 times the normal amount) before you even start trying to conceive.  I would never want this to happen to anyone else and they don't know if this is the reason...but learn from me and take your folic acid!  I can tell will never stop wondering if something could have been prevented (if by chance something ever happens).
The other attending dr told us what we thought were absent "S's" are NOT episodes!  We are very relieved today as we had been sitting on pins and needles.  We are exhausted...all of us finally got to take a nap today after the dust settled...we all woke up feeling like a train had hit us.  I can't even tell you how long we slept for.  We woke up at 7pm...Daddy went to go get food....came back a little while later empty handed and said "did you know it's 7 at night, not 7 in the morning!!!" & I said "yeah".  Oh, we also got a few smiles from today!  The dr won't let us leave till he has another good day and also wants us to stay in Cleveland at least for the weekend.


  1. Oh I am so relieved!!! I know how hard the recovery period is. I think yours is even harder than ours was, but it won't last forever. Six months from now you'll look back and say, "We are soooo glad we did this surgery for Cole! It was worth every moment of anxiety during the recovery period, because look where he is now!" -Ashley

  2. I am SO SO happy that things are looking up! Hopefully it will just continue to get better and better. You guys our in our prayers. Candice Richardson--

  3. Great News!!! Momma always knows best, and i always believe that crying is better than silence. Prayers for a lot of good days ahead!!!

  4. This is fantastic news! So happy that you guys are starting to receive good news, I would say you are definitely due for it! This is Sierra, btw, Amanda's sister (with Sew Tiny Baby). I feel like I know you guys and have blog-stalked you closely this past week especially. I wait every day to get an update on Cole. You are amazing, as is Cole and your husband. My thoughts are with you constantly.