Thursday, October 25, 2012

Scott Spasms - please pray

When I first met Scott back in November of 2008 he had a motion disorder. He wasn't sure what suddenly caused this disorder and why it would randomly take over his body. He would carry around crutches because he wasn't sure when the spasms would attack his body and he wouldn't be able to walk or sometimes speak until they subsided. Most of our dating life was spent visiting Doctors in Johns Hopkins, NIH and trying to get into the Mayo Clinic.

(after our visit at Johns Hopkins) 


The doctors ran tests and had no idea what caused this disorder. Most of the Doctors were pretty discouraging. Since he couldn't make himself have the spasms I recorded him shortly after we were married because I was determined to get some answers and to find a cure.




The Doctors still could not figure out what is wrong with Scott and we continued searching for an answer. The spasms would make him lose control of his legs and he would fall to the ground so we were limited to what we could do. 


Through out my pregnancy I had to not only make sure I was taking care of myself and our baby but also take care of Scott. I was stressed out knowing that he could have a spasm at any moment and was constantly worried about what I could do to help him. The EMT's were at our home at least twice a month. Since Scott is Type 1 Diabetic (has been since he was 12) the spasms would cause his blood sugar to drop drastically and the EMT's would have to come over and help him out. Scott would lose motor function, sometimes couldn't speak and his spasms were so violent he actually broke a hospital bed with them and had to have me, three nurses and a handful of Drs try to hold him down. 

When I had Judah in December of 2010 Scott had a spasm in the hospital room. I remember holding Judah and crying while the nurses came in to help out Scott, wondering how are we going to do this. I'm not going to be able to trust Scott alone with Judah or he may have a spasm and drop him. 


Then in February of 2011 Scott's boss read an article in the Washington post about this Olympic ice-skater who had random spasms and saw this Dr in Delaware who cured her. Scott contacted the Dr, Dr Matthews and we saw him. After a few sessions the Dr was able to essentially cute Scott of his spasms. Since then we are able to run together, Scott can hold Judah, move heavy things, eat foods he wasn't able to eat before and we have a better quality of life. But Scott still is losing weight. He eats more than Judah and I combined and he can not keep the weight on. So today Scott and his father are driving up to see Dr Matthews again. Dr. Matthews is going to work on Scott and also work on Scott's dad Mike. Mike hurt his hip really bad and we think that Dr Matthews can help him so he doesn't have to go into surgery.

If you get a moment, please pray that Dr Matthews is able to help Scott, that he is able to pinpoint why Scott is unable to gain weight and help fix the problem. It breaks my heart seeing my husband just get skinnier and skinnier and struggle with his blood sugars because of his weight problem. Also please pray for my father in law Mike, that Dr Matthews is able to heal his hip problem and restore it. Finally please pray for safe travel mercies. I always get anxious when Scott travels since he is diabetic, but I have to remind myself that he has had diabetes since he was 12 and knows how to take care of himself. 

Also please pray for Judah and myself. That Judah doesn't freak out to bad with his daddy being away for a night and that we are able to actually get some sleep tonight. I haven't slept all week knowing that Scott was going to see Dr Matthews again today.




We would love if Scott could be spasm free and be able to finally gain some weight. 



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43 comments:

  1. I hope you get some answers soon. Did the doctor ever find out the cause for the spasms? Will be thinking of you.

    xx

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    1. Thank you Susanne. It appears that Scott had a diabetic episode in highschool where he blacked out while driving a car and hit a tree. He hurt his neck/spin but thought nothing of it. Then a few months before his spasms started he was skiing with his brother and hit some ice, flipped over and he said his brother was afraid that he broke his neck. Shortly afterwards he started having the spasms. Scotts Dr was able to fix the disc's that were messed up in his spine. He thinks he broke something in his back and when ever he ate certain foods or had excessive exercise it would make his body spasm bc the discs were moving in his back. Not sure if that makes sense or not ;-)

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  2. I'm so sorry. I will keep your husband and your family in prayer.

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  3. So sorry to hear about all of these...you've certainly had your fair share of struggles! You're all in my thoughts. <3

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    1. Thank you Caitlin! We are def ready to be back to normal and not stress about stomach issues or spasms anymore.

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  4. Oh my gosh, I am so sorry to hear what a struggle this has been for you two. You two are so inspiring facing this together and both being so amazingly strong for one another. You two will be in my thoughts and prayers!! Sending lots of love and hugs! xoxoxo

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    1. Thank you sweet friends for your even sweeter words
      xoxo

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  5. I will be thinking and praying for all of you. Good luck!

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  6. Oh my goodness! So sorry!!
    I'll definitely be praying for you both!

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  7. My thoughts and prayers are with u and your beautiful family. Stay strong!

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  8. I'm praying for God's peace that surpasses all understanding for you and Judah! I'm praying for answers & healing for your husband and his dad. God is so good!

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    1. God is so good, I am in awe of what I've seen as far as Scotts healing so far. Thank you for your prayers

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  9. Prayers for all of you! For health, safety and peace :)

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  10. I will be praying like CRAZY for you and for your sweet husband. God is good and He will continue to be in control of all of this.

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    1. Thank you Heather, God is so good. Scott is a billion times better than he was two years ago. I can't wait to see what the Lord is going to do in Scotts life through this journey.

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  11. This has me in tears!! We will pray and pray and pray again for your husband's health and for his dad's recovery. For you and Judah too. We will keep you in our thoughts!! Much love from B and I!! Hugs!!!
    P.s. please let me know if there is anything else we can do!!
    Andrea

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  12. I'm so sorry you are going through this. When I watched his video, it reminded me of my husband, when he would have these 'tremors' we called them. This was back when he was smoker, and he would get them in the evening, after he smoked more then usual. Since he quit smoking back in 1998 he has not had one. So we always believed that it was something that they were putting in cigarettes. I never knew anyone else who had something like this. Then I see your story, I understand that its not the same, but it has similarities.
    What kind of Dr is he seeing? What kind of tests have they done? Sorry.... so many questions.
    My prayers and thoughts are with you and your precious family.
    Love,
    Denise

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    1. thank you so much for your prayers denise. Scott doesn't drink or smoke! He is probably one of the most straight edged people I know. They have done just about every test under the moon. We were not sure if it was complications from being diabetic or some sort of genetic thing. We think the spasms were from Scott being into a bad car accident (he blacked out when he was in highschool from a low blood sugar and crashed his car into a tree and he also was skiing a few years ago and almost broke his neck by slipping on some ice) so his discs were all messed up. The Dr who is a muscle and spin dr was able to fix the discs and Scott hasn't had a spasm in over a year. But now he can't gain weight. He has lost over 100 pds in the past 5 years. He has lost so much weight even in the past year. Its pretty scary and we are really praying for an answer as to why he keeps losing weight.

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  13. Your post pulls at my heart strings. Wishing for good news for you and your family! Xo

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  14. Oh hun! This post broke my heart! I can not imagine what this all must be like for you, your husband and little Judah.
    I will pray that everything gets better and that the Dr. can help both of the guys out!

    The video of the spasms was hard to watch. Him apologizing to you.
    Stay strong mama!!

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    1. Oh the video just breaks my heart. I couldn't bare to watch the whole thing yesterday when I posted it up.

      Thank you for your prayers. We know that this is all part of Scotts story and who knows the impact it can have on another persons life.

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  15. Keeping you and Scott in my prayers--God has a special place in his heart for a wonderful wife and mother like you.

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    1. thank you pam, those are such sweet words

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  16. You and Scott are such beautiful souls, and of course little Judah. I will ask the angels to surround you all and help you through this difficult time. Me and my husband often worry what it will be like when we have a child, with my mobility problems, he will be in a situation much like you - caring for both his partner and his child. All I can say is, you inspire me. xxxxx

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    1. Thank you for your sweet words and prayers

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  17. Praying for your family, sorry friend. Praying healing over Scott, wisdom for you and your doctors, and peace and comfort as you walk through this.

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    1. Thank you for your sweet sweet words of encouragement

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  18. So so sorry to hear that!! Wow, that is very frightening when someone you love so much is sick. Praying that you find answers, and that Scott can get well!! You are brave, mama! xox

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    1. Thank you friend. It has been really scary in the past few years, but the Lord is teaching us to lean on Him more and more and not onto our own understanding of things.
      xoxo

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  19. Jess,

    Lori and I are so sorry about everything you and Scott are going through right now. We're praying for the appointment and that Scott will be able to keep weight on his body. We will also be praying for you and Judah as you likely emotionally experience all of this differently than even Scott does. We're thinking about you guys.

    Chris & Lori

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