It has been a LONG four weeks, but here we are at the Cleveland Clinic. After being at Kosair for two weeks and still no improvement Dr. Puri referred us here. Sadie has been through a lot, but she's hanging in there and finally, her seizures have decreased. She has gone from 20 or more seizures a day to 3 or4. So things are getting better. But from Sept. 25th until now has been a very long, hard, emotional, and stressful experience. I know I haven't been very good through this time about keeping everyone up to date, but it has been a heart-wrenching experience for me and very difficult for me to talk about because there are so many unanswered questions. But that's why we are here. The Cleveland Clinic is suppose to be one of the best children's hospitals in the WORLD! There are children from ALL OVER who come here to get treatment. So far, we feel confident in Sadie's treatment here and we feel very positive. Since we have been here ( Sat. Oct. 20th) Sadie has been on 24hour EEG and video monitoring. They too are trying different med.s, just like Kosair did, but they are giving them more time and trying them much slower and not changing so quickly. They did a special test called SPEC which basically tells them where the seizures are starting in the brain, and they also did an MRI. All of these tests and scans are suppose to be going to the brain surgery team on Monday to decide if Sadie is a candidate for brain surgery. The pediatric neurologist here said according to Sadie's EEG she doesn't think Sadie will be a candidate, but she hadn't seen her MRI or SPEC test yet. She said that on Tuesday (Oct30th) she will meet with us to tell us what the surgery team has decided and based on their decision we will talk about Sadie's plan for the future. The GREAT news is that they are giving her a medication called Phenabarbitol and seems to be helping a lot. The not so good news is Sadie is on such a high dose of it that she is really "drugged" acting. So hopefully we can find the right dose that continues to help Sadie but also allows her to be a 14 month old. We still don't know why Sadie is having seizures, so far all of the labs that have come back have been normal. We are still waiting on several more labs to return in the next week or two. All the doctors have said that more often than not, they never find a reason for a persons seizures, that's the mystery of epilepsy-we just don't know enough about the brain. So, if we can find the cause then great, we can hopefully treat it successfully, but if we can't find a cause then we just have to be willing to try all the options out there so that's what we are in the process of doing. I want each and everyone of you to know that I thank you for all of your cares, concerns, prayers, cards, gifts, listening ears, helping hands, and loving hearts. It has helped us so much through this extremely tough time. When I think of all the peolple who have helped us so many faces come to my mind and my words alone are not enough to show my gratitude and appreciation. So as best as I can here on our blog, THANK YOU! ( I'll keep you posted)
Saturday, October 27, 2007
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16 comments:
I've tried to call you, but have had no luck on your cell phone. Please know that we are thinking of you and let us know what we can do to help you. If Sadie is anything like her mother, she is a trooper and will be strong through this difficult time. We love you!!! Carly and Blair
We have had your family in our thoughts and prayers the last few weeks. We miss you at school but Sadie is so lucky to have you by her side. You are one of the strongest people I know. If there is anything we can do to help, please let us know.
Take good care of Ms. Sadie. We hope to have all of you home soon!!
Melissa
We think of you guys everyday! Please let us know if there is anything we can do! We miss you and love you guys! See you soon!
I know I have not known you long, but I am keeping your little girl in my thoughts and prayers. From the short time I was around you, I realize you are a wonderful mother and know that having you near is making this easier for Sadie. I am glad you also get to have Scooter so near during this difficult time. God bless you and your family.
Teresa Zollman
Precious Baby Girl, we are praying for you everyday. You have been in our thoughts & prayers these last several weeks & have just been waiting for an update. If you are 1/2 as strong & determined as your Mommy, then there is no stopping you. If there is anything AT ALL that we can do for you all, please let us know. We love & miss you!!!!
The Wilson 5
Scott, Stephanie, Hunter, Callie & Dakota)
Hi it's miss peggy i miss my Sadie baby . I can't wait to see her back in my class playing.We are praying for her everyday.I believe God has big plans for Sadie . she is a very special little girl.sadie is blessed already to have parents that wont give up and also she has GOD with her caring her every set of the way.if you need anything just let us know love peggy
Hey SADIE GIRL! We are all praying that you come home soon! Sarah, Seth and Scooter, we love you guys, stay strong. Know that your family is standing right beside you guys! If you need anything please call!
Sarah and Seth,
You have been in our thoughts and prayers. I cannot imagine how difficult this must be for you. Be strong for your kids, and best wishes to Sadie. She is such a strong little girl!
We are thinking and praying for you all everyday...We miss you and love you all so much. The scripture says "be still and know that I am God." This I know is hard to do but He will get you through this difficult time in your lives. Love to you all-Meredith
we are praying not just for sadie, but for you, seth, and scooter. i can't begin to fathom how difficult it is to watch your baby go through this. but if anyone can do it, you can! you are such a strong woman. cast your worries and your praises to God...he will gladly take them. love you all!!
Sarah
Just heard from Alicia and want you to know we are all praying for you and your family. Remain strong for Sadie and don't stop praying -- God has a definate plan so just Trust! If I can do anything, let me know!
Love,
Angie Maxwell
Hey Sarah,
Since the first day you told me about your sweet little girl "Sadie" I have been praying and thinking of her often. I will continue to have her in my thoughts and ask for healing on her and to give you the strenghth to be there for her and the rest of your family as they need you as well. Girl you are a strong person I know this is extremly hard on you and your family to sit and watch and you can not do a thing, but please stay positive for not only Sadie but yourself!! Love you & miss you, Toni Kemelgor
Sarah,
I was so sorry to hear of Sadie's illness. Doreen and I are thinking of you and wish there was something we could do to help. Please remember that this will soon pass and you will all be home healthy and happy.
Gary and Doreen Graves
Hello, Stewart Family!
It's Ms. Lisa and Ms. Amber from KidsCare.We were just letting you know that your family is in our thoughts and prayers, especially Sadie. Sadie is a very special girl and she is very strong just like both of her parents. Sadie will come through this rough patch in her life.
We all miss seeing Sadie and Scooter at daycare. They are very dear to us. We pray for Sadie and her family everyday.
We added Sadie to the Prayer List at the church, so our church family could also pray for Sadie during her tough time.
If you need anything from KidsCare or the church, please feel free to contact us.
KidsCare is there to help with anything you need.
Hi Stewart family, This is MOur s.Judy from daycare I'm the cook and Ms.Peggy sister I just wanted to let you all know that my family and our church is praying for Sadie and you all.We had her in our pray from the first time Ms.Peggy told us about her.I miss seeing them at daycare hope to see both of them back soon.
In prayer
MS.Judy
Hi Sarah and Seth,
Just a note letting you know I'm thinking about Sadie and wish her well. My son Josh was 10 or so when started having seizures,he now take daily meds and is doing fine. He drives,plays golf and is an accountant. Just know she'll get better and well do just fine.
Uncle Skip--In case you don't know me, I'm Pauls brother is Seattle.
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