Friday, July 27, 2012

In the Blink of an Eye

Things really can change in the blink of an eye in Mitoland. About a week ago, Will randomly started stuttering. It came out of nowhere. He hasn’t been sick, nothing.
Of course I have tried to connect about 100 things with the onset of this stuttering… I was switching up stuff with the Miralax (BTW, that didn’t work, he needs to stay on it), he had two BM accidents, he’s been sleeping later in the morning, it’s hot… you name it and I’ve tried to correlate it.
I have noticed it’s mostly around vowel sounds like “I” or “Elmo” and it’s usually at the beginning of a phrase or sentence, not necessarily in the middle. But, it has happened in the middle, just very rare.
I can’t correlate it yet to being tired, hungry or overstimulated.
I’m going to keep a diary this weekend and try to record the time, the letters and where it is in the sentence to try and make some sense of this.
From the research I started this week, it appears that there are two types of stuttering: Developmental and Neurological. (Duh). This seems to over a good overview of the differences. http://www.stutteringhelp.org/DeskLeftDefault.aspx?TabID=81
I thought this was very helpful to describe symptoms between the two. Some of the patterns that set the two apart include:
  • Neurogenic stuttering may occur at any point in the production of a word, rather than primarily at the beginning, as is common with developmental stuttering.
  • Neurogenic stuttering often occurs on any type or class of word anywhere in a sentence rather than being linked to content words such as nouns, verbs, adjectives and adverbs.
  • Neurogenic stuttering may occur in any type of vocal behavior, including singing and repeating well-learned passages, such as the pledge of allegiance. The disfluencies may occur with equal frequency in any type of a speaking situation.
  • Neurogenic stuttering is often not alleviated by the same conditions that significantly lessen developmental stuttering. These include choral reading, singing, adaptation (repeated oral reading of the same passage) or speaking while under auditory masking or delayed auditory feedback.
So, this is also why I’m going to keep a diary this weekend to see if I can discern anything. Likely, we’re going to add speech therapy into the mix asap. I firmly believe in early intervention, so hopefully this will help curb it.
You know to the average eye, Will looks like a normal little guy. Maybe that has made this whole Leighs/mito “easier” because he’s not in a wheelchair or showing obvious signs of other things. Maybe that’s why this stuttering thing is hitting me hard. It’s yet another outward display and sign that he really is sick and that we’re going to lose him.
To be constantly reminded of his physical limitations is one thing and we’ve adjusted. Now, it’s a constant verbal reminder of other limitations. His teacher told me that he was trying to say the name of one of his many girlfriends, Ella, and he simply couldn’t get it out. You could tell he was frustrated.
I had just, literally in the past month, finally gotten to a really good place. Neil and I have lost about 8 pounds (each of us), and I felt like we were in a good groove. My mental outlook has changed literally overnight. Hopefully the weight loss will continue, but Will’s health is just so fragile. It’s easy to forget when things are going so well.
Maybe things will improve, maybe they won’t. At least I’ve gotten to hear his beautiful voice say I love you Mommy and see him walk and enjoy life. That’s a gift I can really focus on enjoying today.

15 comments:

  1. Good luck, Lori! Hope you can find patterns in your research this weekend to figure it out.

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  2. Bless y'all, I can't imagine how heartbreaking this new issue has been. Will be praying for easy reversal. Y'all are an amazing momma and daddy

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  3. You are amazing and an inspiration to every Mom on how truly precious life and the little things are! We will continue to pray for your sweet family.

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  4. Lori, I so enjoyed meeting you and talking with you at the symposium in June. It is so fascinating to be a part of another Leigh person's journey. It will be interesting to see what comes of this. I DO hope that the Good Place continues. You are an inspiration. Cheryl

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  5. Lori
    Hope the stuttering gets better. Leigh is a crazy disease for sure but hopefully he is just extra tired with the heat and that would explain it.
    Let me know if you need anything.
    I will ask around my Leigh family contact if anyone heard of that
    Sebastien

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  6. Hugs to you- I am so sorry. I wish I had better words, but you are always in my thoughts and prayers. I hope the stuttering isn't permanent- it's just not fair.

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  7. Hang in there, Sweets. There are still many happy moments ahead with Will. Don't focus on the end of the vacation; focus on all the happy and breathtaking moments still to come.

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  8. My daughter Aislin started stuttering really badly when she was about 4. Of course with Hudson's history I freaked out. We decided to wait and see what happened before getting therapy involved. In about 6 months, it went away on its own. We did notice a correlation between the stuttering getting much worse when Hudson was inpatient, so it seemed to be the way she responded to the stress of us being gone. Good luck figuring it out, I know it's so hard. Your family is always in my prayers.

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  9. My daughter Aislin started stuttering really badly when she was about 4. Of course with Hudson's history I freaked out. We decided to wait and see what happened before getting therapy involved. In about 6 months, it went away on its own. We did notice a correlation between the stuttering getting much worse when Hudson was inpatient, so it seemed to be the way she responded to the stress of us being gone. Good luck figuring it out, I know it's so hard. Your family is always in my prayers.

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  10. My daughter Aislin started stuttering really badly when she was about 4. Of course with Hudson's history I freaked out. We decided to wait and see what happened before getting therapy involved. In about 6 months, it went away on its own. We did notice a correlation between the stuttering getting much worse when Hudson was inpatient, so it seemed to be the way she responded to the stress of us being gone. Good luck figuring it out, I know it's so hard. Your family is always in my prayers.

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  11. Your trip to Holland is not over. Focus on the small wonders that always seem to be there - the piercing blue eyes, the beautiful grin and best snuggly hug I have ever had in my life. We love you three! Mr & Ms V

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  12. I hope you get Will's stuttering figured out. Trace lost what little speech he had with the development of seizures/mito. He has private speech therapy 2x/week. Within the last month we've seen an improvement in him, three year later, but progress :-)
    Always praying for your family!!

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  13. Thanks for all the comments and support! I go back and forth - is this just normal development or is it mito?? I can't decide. Whatever it is, we'll just work it into our lives and keep on going!

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  14. Hi Lori, I've been meaning to comment on this since you posted it but here I am 2 weeks later...sorry...anyway Abby had a pretty significant stutter at one point when she was 3. It was like her brain was working faster than her mouth and she just couldn't get the words out. From what I can remember I am pretty sure it was the beginning of words/sentences she had the most issue with. We were concerned about it at the time, but with our docs advice we waited it out for a couple of months to see what happened. It ended up resolving on it's own. It would be awesome if this is one of the "normal" issues for Will instead of a Mito one...Good luck, thinking of you guys everyday even when I take forever to comment:)

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