Quick post because I love you guys and want to keep you informed..and I have dishes waiting for me in the kitchen! We went to the Cleveland Clinic Main Campus today (1.5 hour drive) for Riley's appointment with her Opthamologist (eye dr), Dr. Paul Rychwalski. We were instructed to have this follow up vision check up since Riley no longer takes Sabril (Vigabatrin) to see if her eye sight was affected. We were very happy to hear that her vision is perfect, like her first check up before starting the drug. Which ofcourse was a relief and what we had hoped especially because of her short time on it (less than 3 months.) So glad that's behind us and not something else we have to worry about at this time.
Also, wanted to share with you the results of my genetic testing. I called today since it had been a couple weeks past their expected deadline to have the results and be able to tell me. I was so glad to hear that I am NOT a carrier of TSC! My blood work showed I was in "the normal range" whatever that means!. We're leaning to not getting Galen tested because of the rarity it would be for him and his sister to not show any signs of the disease. 33% of TSC patients get it from a parent while 66% is new genetic mutation. So it would appear that somehow while her genetic makeup was forming, the TSC 2 gene was mutated. After considering this, we've decided to have more children in the future and make more cute babies like Riley! Adoption is always an option though! Alright, well we'll see how her weight check goes tomorrow. Not too excited about it. I started her on fresh goats milk today. I want us to exhaust our options before feeding tubes! You'll here from me soon! Again, prayer's appreciated!
So glad to hear about your "normals"! Hope she does really good on the goats milk for you! God is good at reminding me that He gives children the families He wants them to have, sometimes He puts them there at birth, sometimes by adoption, sometimes by other means but He is in control. I experienced that growing up in my family (we are insane and disfunctional and perfect for each other all at the same time but I have 6 sisters that are my best friends!) and now i have 2 girls i love and adore! God holds the future and has great plans for your family!
ReplyDeleteGood post Kamz. Good news! I'm excited to hear you'll make more babies =) Because Riley really is too cute and I want to see more Hostetler babies! LOL Praying that the goats milk will work! So wierd that all the food and formula wasn't working...
ReplyDeleteWhooo Hooooo!!!! Praise the Lord! :o) I'm so glad that Riley's eyes are good and that you are not a carrier of TSC! Praying all went well at the doc yesterday and that the goat milk is helping her to pudge up a bit. :o)
ReplyDeleteLove you Kamzin!
-Rachel
Oh, Kamzin...You make me cry. My name is Naomi Hostetler. I don't know if you remember me. (You took care of my mother, Mary Yoder.) My sister, Barb, told me about your little Riley. I would love to talk with you sometime if you ever have a few momennts. I know how much care a baby with special needs takes! One of my granddaughters has TSC as well. She was also on Sabril for a while...that's all I will say for now. Call me if you want to talk. (574-453-1061) I am praying your baby will gain weight and not need that feeding tube!! I hate to see you go through this, but I believe God has a plan through it all, though we often don't see it and certainly don't want it at the time. Lifting you up in prayer, Naomi
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