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2.29.2012

6 MONTH POST OP.

 First off, I just have to say that our trip was wonderful thanks to Joe & Emily.  We met them back in June when we went to Cleveland through our Church.  Our church is HUGE...it's world wide, which came in handy for us!  We called the Bishop of the Cleveland ward & they had offered to make us dinner back in June  & September, along with a few other families.  Joe & Emily graciously offered to let us stay with them since there were no rooms open at the Ronald McDonald house...they even made the most delicious meals for us, took us shopping & to & from the airport.  It was GREAT, Thanks guys...We love you!!!  Here is a picture of Cole kissing Ellie (their daughter)...he kissed her over & over & over...it was so cute. 

The plane rides were THANKFUL uneventful this time around...but still VERY exhausting...flying half the day & being in the hospital half the day is a little much!

This is Cole's MRI at his 6 month post op...Left Temporal & Occipital Lobectomy (removal of lobes). This is the first time we saw his MRI after surgery...crazy huh?  The white area is brain fluid now.

Cole had a 1-hour EEG, then we met with Dr. Lachhwai (neurologist) & Dr. Bingaman (surgeon).  Cole's EEG did not show any "S's", however that doesn't mean that he isn't having them, he just didn't have any during that hour...his EEG was abnormal (which was to be expected because of the damage that was done from the seizures.  The RIGHT side showed Large Spikes (meaning that he is prone to having seizures...which was also to be expected).  So, we pretty much have to wait until August for his 1 year post-op so they can compare his EEG from now to then....at the apt we are hoping for his EEG to be completely normal...we already knew going into it that it wasn't likely that his EEG would be normal yet...it takes a long time to heal.  As far as meds go, are switching him from Keppra to Lamictal.  They talked to us about the  dangers of switching him from a medication that could be keeping the seizures at bay...but they also realize that Cole can not stay on the Keppra because of the "rage issue".  So, it will take about 2-3 months to wean the Keppra & get the Lamictal up to a therapeutic dose.  The side effect of kids on Lamictal is an allergic reaction and horrible rash...if that happens, we have to STOP immediately & get medical attention.  We are PRAYING there won't be ANY complications and that it will be an easy transition (haha..."easy" isn't in our vocabulary & doesn't seem to linger in our lives...so we will pray for the best).  I REALLY hope this works because Lamictal is a mood stabilizer...which Cole desperately needs...and so do we!  He has to stay on a medication for 2 years w/being seizure free until we can wean...everything with seizures seems to be PATIENCE...even after the fact of getting them to go away.  I am pretty sure PATIENCE is my life lesson.  Ok Heavenly Father, I think I've sufficiently learned patience...so I won't be need any more adversity ;)  
Dr. Lachhwani is just PLAIN AWESOME!!!  He came to get us from the waiting room, got down to Cole's level, stared at him and said "my goodness, you aren't a little baby anymore!  Look how much you've grown!".  I know I say this all the time...but I seriously LOVE this man.  He is SO genuine.  He loves our family and truly wants to help.  He's the only doctor that has ever hugged us.  I can see it in his eye's how much he loves his patients and wants to help them.   If I was able to clone one person in the world...I think it would have to be him!  

Anyways, on to some good news...I'm not sure if I can talk about it because it's still in the works.  But Cole's neurologist in our home state & Dr. Lachhwani have been talking a lot to each other ever since they started communicating about Cole.  Cole's neuro here has started referring his "complicated" patients to Cleveland Clinic (mainly to Dr. Lachhwani)!  This is EXACTLY what I wanted to happen...after going through the crap that we've gone through...all I wanted was for them to realize that they can't help everyone...so they should refer their patients to Cleveland Clinic or even to other places that can better help them.  Not only that, but Cole's Neurologist here is going to be sending some of the doctors to Cleveland Clinic to be trained!!!  Obviously you CAN'T clone doctors...and the start of this is only a drop in the bucket...but hey, it is PROGRESS!!!  Dr. Lachhwai realizes that other people far away need help and this is his way of helping them.  They are also trying to set it up to work as a "team" so if someone here needs their EEG & MRI looked at...they can send it to Cleveland and tell the drs here what they think and what the best treatment plan would be.  Isn't this amazing news!!!  It's a work in progress and you can't train people to be amazing over night...but it's going to be a great thing! This happened because of 3 little boys....Cole, Bertrand & John.  ...we heard about the Cleveland Clinic from Bertrand's parents & Bertrand's parents heard about it from John's parents.  ...see things happen for a reason...pray for good things to keep coming so more & more kids can get help!

5 comments:

  1. I am so happy for you and Cole!!!! I am also sl excited about the doctors working together. I cant tell you how many times we asked if they would or could do this. I think It will help so many kids to have Cleveland look and give their opinion! You are amazing! Thank you for sharing and for the wonderful update! Also thank you for making things better for our little Bailey and all the others like us. Oh and today marks one month of no seizures for Miss Bailey!

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  2. Oh I just wanted to cry when I read this. I am SO HAPPY that you have helped the team at PCMC to form a relationship with the Cleveland Clinic. The team there had all the best intentions but they simply didn't have the expertise that they have at the Cleveland Clinic. I was so, so grateful that I found the Cleveland Clinic and they saved my son, and grateful that they did the same for Cole. You personally helped to make it possible for more families to experience the miracle of seizure freedom by helping the hospitals to form this relationship. I so admire you for that and appreciate what you have done.

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  3. Oh by the way, the medication change can have some side effects so don't be too worried if Cole starts acting strangely. LJ was extremely tired and oversensitive the first few weeks of the medication change. Within a couple of months, he had mostly adjusted.

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  4. This is AWESOME NEWS!!! Love it!!! Thank you so much for getting Dr. F to cooperate with Cleveland! That is HUGE!!!!!! Love you all! :)

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  5. That was beautiful!!
    Cole is so adorable! :)

    I hope and pray that the new medication goes well and easy, YOU DESERVE EASY! (:

    GOD BLESS!!! <3

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