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2.27.2011

OUR WEEK AT THE CLEVELAND CLINIC

I love this picture,it's perfect! Painting by Greg Olsen
First off, we want to Thank everyone who made this trip possible for Cole. At the end of January it felt like a wall was built infrount of us. We didn't know what to do or where to turn...the drs here weren't willing to help us...didn't want to do an overnight EEG or take a second look at his MRI as we had asked. It was hard because in our hearts we knew something else was going on.

When we found out about the Cleveland Clinic (thanks "C"), I knew I had to get Cole there. I knew they could help him or at least give us more answers and if they couldn't I would have been satisfied knowing that Cole saw the best drs. I told "A" that I was "going to get Cole their and I didn't care what it took". He laughed because he knows when I put my mind to something, NOTHING will stand in my way...and said "ok". We prayed about it and felt like this was what we needed to do. We got everything worked out and ready to go in 1 week!

We had an amazing and overwhelming amount of support and we thank each of you for your prayers and donations. I'm am shocked at the generosity of friends, family and stangers...who I pray will be blessed for what they have done for us. We've had 1,600 people look at our blog this week...from the US, Belgium, Canada, Singapore, Mexico, Belize, Germany, Vietnam, Columbia, United Kingdom, Czech Republic and Netherlands...what a blessing it was for us to see the Love and Support! We truly felt each prayer from everyone. We felt the Lord leading us and watching out for us every step of the way.

There was a few things that were significant to us that I wanted to post...Cole's favorite toy stopped working and needed new batteries. I sent "A" to the gift shop to get some. It was closed..."A" saw a maintainence worker and asked him where he could find batteries. The guy appologized and said everything was closed. "A" thanked him and started walking away. The guy called out to "A" and asked him what kind of batteries he needed, he pulled to BRAND NEW double A batteries from his pocket. It was like an angel placed them there!

The second was in the morning. "A" asked me what I wanted for breakfast, I told him a big croissant and 5 peices of pinapple would be nice. He came back and said "you'll never believe it, but that was the LAST croissant & there was ONLY 5 peices of pinapple left!" These are small things, but they are significant to us...we truly felt that we were being blessed in everyway. The Lord held our hand and he answered your prayers and we thank you!

And of course, last but not least, we did get an answer as to why Cole has seizures! It wasn't something a parent wants to hear. It was good to get an answer, but to hear that practically half of his brain is malformed breaks my heart and makes me ill thinking about it. I look at him and wonder how this could have happend, how this perfect little boy could have a malformed brain. I don't think it's something we will be able to fully understand and comprehend in this life. We don't know what is going to happen...but all we know is that the Lord isn't going to leave us now. He has sent wonderful people to support us during this trail.
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7 comments:

  1. We are so happy you were able to make this trip safely and get some answers. This is when you can see that as parents we have to "Work and watch, and fight and pray" like it says in the great hymn. Keep that shoulder to the wheel and be assured that the Lord is with you and our prayers are with you too. You guys are great parents. We wish you all the best.

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  2. I am so anxious to hear what the committee comes back with! Just by knowing the cause of Cole's seizures you could have more options for treatment! I hope you hear from them soon! Love to all 3 of you!

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  3. So happy you got home safely! What a trip, we had such a similar experience with the "staff" at Cleveland Clinic. If I would pause for a moment there would be someone there asking if I needed anything (from the custodian to drs). Truly an amazing place. I am so glad you got some answers and hope that you will continue to get more. You continue to be in our prayers.

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  4. It sounds like you guys were where the Lord wanted you this past week! How comforting to have been led to a place that is equipped to help your little family! Cole is such a sweet little boy, I am so glad that he is at last in the best hands! I have been praying for you guys, & I hope things will continue to progress well! GOOD LUCK

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  5. I'm dying to hear all of the results too! What an amazing place. Did they give you an estimate on how long it would be? You will for sure need to come to our next girls night out to keep us all informed. We'll be praying for you and the doctors.

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  6. I am so glad that you are feeling the Lord's hand in your lives. I can't imagine how difficult hearing that news would be (although at least you have some answers). We will continue to pray for you!

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  7. i am so glad u followed ur gut and insisted on having Cole see another doctor. im glad u have answers-even though the answer is hard to deal with. u dont know me but i found out about ur story through robin klingler leach. (i have known robin for many, many years.) i checked out ur party site first then came over here. i can both sympathize and empathize with ur journey ur are undertaking. my oldest has epilepsy as well as autism.. his is not nearly as complicated as your sons but we have used Keppra as well as Topamax. we also caught my sons earlier- at like 6 mos I believe. so i pray for u all that the lord helps you and comforts you, know the anxiety and the worry u must be feeling, and will try to give a donation to help with medical care as i am able to. i have been blessed with having medical care thr military but the bills still are sent to us first- so i know cost can add up quickly! take care, remember to breathe and take one day at a time. (and please remember that every now and them u still need u time!)

    April Shaltes Hudak

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