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3.30.2011

REDEMPTION.

The children's hospital is redeeming their selfs! We met with the Director of Neurology yesterday and it went so good (yep, Cole's 3rd neurologist here...but 6th one total). I let the dr know that in January we tried to get the other neuro to pull Cole's MRI up (from 10 months old) to re-check, but she shut us down. Then told him we asked for a 2nd MRI because he was older now & his brain has grown...again...she shut us down. (I wasn't rude or anything, but just needed him to know). We told him we had gone to Cleveland Clinic (he said it was in his Top 5 hospital choices) and was very respectful that we had taken him there...he asked what drs we saw, mention dr. Wylie (he said, oh she is FAMOUS!!). The proceeded to tell him what they found. He was so helpful and happy for us that we had answers. He and the drs in Cleveland will work together...so Cole will be in good hands. Instead of ACTH or Vigabatrin, he decided to put Cole on Zonegran (& keep keppra), & wean Toppamax (which is good because Generic Toppamax is in National Shortage right now till June! luckily we found another pharmacy that had one month supply left). He recommended surgery as well. He talked to us about all the things that can go wrong; death, infection, stroke etc. But said Surgery for Cole out weighs the seizures. We've prayed about this & we feel good about the surgery. he said, finding the huge malformation is the "tip of the iceberg", meaning that he may have smaller malformations they can't see that can produce seizures later. But with kids they do so well with surgery. I don't know if Cole's battle will ever end in this life, but I hope he always knows we will continue to fight for him.
I love you little "mole man-Coleman". I love it when you rub mine & daddy's arm to let us know you love us & how cuddly you are!

3 TRIPS TO THE HOSPITAL IN 1 DAY.

Yesterday was the longest day EVER! It started out at 8am, trying to get a pee sample from Cole (which would be easy, but he had to fast for 10 hours...we tried on Monday, it didn't work so we tried again Tue...finally got it). We headed to hospital #1 (who looked at the order the day before & said the urine needed to be immediately place on dry ice & instructed us to come ASAP). I got there w/ the sample and he had fasted as instructed...only to find out they don't have that blood kit or dry ice! I asked why the lab worker hadn't said anything the day before...she gave me all the instructions etc. I was told to go to the children's hospital (45 min away) and that I need to get his urine on dry ice...she told me the nearest place to get dry ice, of course I get there & they don't carry it! To make a long story short, we got to hospital #2 for his blood work, only to get back home at 1:45pm to pick daddy up at 2pm to hurry & return back to the hospital 45 min away. So we were in hospital mode from 9am to 6pm.

3.15.2011

CAN COLE HAVE SURGERY?

Well, I talked to the dr today.  We are going to try one more medication (Vigabatrin)...has anyone used this before??  We will try it for 1 month...it's not likely to work (beacuse of the malformation) but they want to see him fail 3 drugs plus the Ketogenic Diet. 
We will fly to Cleveland in May (which will give us some time to do some fundrasing...5K, bake sales etc. If you have ideas or would like to help let me know!) when we get there we will do a PETscan (again) & overnight EEG...then meet the surgical team!  They will remove his Temporal Lobe & Occipital Lobe (which he will have a loss of vision, but hopefully the brain will re-route it's self so he can see).  The dr said the surgery is definatly a "Leap of Faith"....becuase you just never know.  We don't exactly have a choice since nothing will "fix" his malformation.  And, our "Leap of Faith" hasn't ever led us astray!

3.07.2011

LOOKING BACK.

Cole (Newborn)

Cole at 8 months (2 months before his seizures).
Looking at pictures of Cole before having seizures is a weird obsession of mine.  I find my self watching videos of him or flipping through his baby book once a month.  I don't know why I do it to my self, because it makes my heart break.  I look at them and want to remember the milestones he made.  I have this video of him waving at 7 months, and I watch it over and over and over.  And as I watch it I am smiling ear to ear.  Once it's over I feel sick, I didn't know at the time how heart breaking and happy it would make me feel 2 years down the road or knowing that it was the last time I would catch a glimpse of him waving to me.  I wonder how he might have been or what his voice would sound like.  Had I known this would have happened, I would have taken more videos of him.  Instead of trying to get him to sleep through the night, I probably would have held him a little longer.  He was such a happy and easy going baby, I almost feel like I lost a baby I've never lost.   "A" hasn't looked at a photo or video of him before having seizures, it's too hard for him & I don't blame him.  Now that I know it was inevitable because of the malformation, I am SO grateful to the Lord for letting me have those first 10 months of peace and bliss.  I know the Lord is all powerful and he can work miracles.  I pray that Cole will be one of his miracles. 

COLE'S CASE REVIEW.

I just talked to the Cleveland Clinic, they said they will be reviewing Cole's case on March 15th & the DR will call us on the 16th. There will be about 60 drs reviewing the case...they will decide if Cole is able to have the surgery (which means they will remove part of his brain). I am not scared (yet) for him to have surgery...I am more afraid of him NOT being able to have it because the only other option would be medication and as of right now it isn't working. We decressed the Keppra because it made Cole a RAGE-A-HOLIC!!! It was an AWFUL week. He was thrashing, beating his head on the ground, trying to fall out of his highchair & SCREAMING LITERALLY ALL WEEK LONG! After the decress it took about 1 day to get our nice little boy back :)

We are asking for your help again...Please pray that Cole will be able to have Brain Surgery & also for the Doctors, that the Lord will guide them to be able to do what is best for Cole and be able to help him. We know that no prayer goes unanswered.

Someone who I've never met wrote this to me, I thought I would share it for those who are struggling right now as well because it touched me!
"We know God is by your side, and although we can't understand why things are the way they are right now, one day we all will be able to testify that He causes all things to work together for good for those who love God." Thanks "M".