tag:blogger.com,1999:blog-43443608930292383132024-02-07T21:42:49.741-08:00The Wehring FamilyLauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.comBlogger59125tag:blogger.com,1999:blog-4344360893029238313.post-27553436855077148492013-08-14T12:58:00.000-07:002013-08-14T12:58:04.740-07:00Medical Update<div style="text-align: justify;">
<span style="font-family: Trebuchet MS, sans-serif;">So it's been 3 months since my last blog post. I started to write over the last 3 months, but ended up too busy or just didn't have it in me to complete. Our lives have been pretty hectic lately. We sold our home and moved into Thomas' parents vacant house. We just put a contract on a new home for our family last week. The last few months have been a whirl wind of emotions and one hell of a roller coaster ride. I'm ready for everything to settle down, but then again I would be complaining of being bored :-)</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">My main reason for the post today is to journal Traces medical history before I forget something. I hope one day soon I can write a fun post with lots of great photos. But for now it's just a boring medical update. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">May 21 - Appointment with Dr. V (epileptologist). We decided that Trace will not be receiving a Vagus Nerve Stimulator. This was a decision made by us after concerns were expressed from Dr. K (mito/neuro) and Dr. P (immune). Their main concern was the high risk of infections. Trace has immunodeficiency. And it's worse than I thought. He is unable to fight any infection on his own. Placing a foreign device in his body would most likely cause infection. If we were to go ahead with the procedure, he would undergo IVIG two days before and then stay for a few days on IV antibiotics in the hospital after. VNS placement is a day surgery for most people. The risk outweighs the benefit, so for now he will continue having seizures. It's pretty heartbreaking to say the least. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">May 30 - Trace had a sleep study. Sleep studies are the worst, but he did much better than last time. Guess he's growing up or just getting used to all of these procedures. We did receive the results which showed everything was okay. However I had to cancel his appointment with Dr. J and we have yet to get in to see her. She's one busy lady. She did order some labs which were drawn end of July.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">June 18 - Trace had an opthamologist appointment due to more chalazions. He had 5 total (3 in right eye, 2 in left). We used Azasite for 2 months along with the usual Bacitracin. They are finally gone. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">July 30 - Trace saw Dr. K (mito/neuro). I was excited to see her as Trace has been doing very well since his last hospitalization in April. She told me she was sorry to burst my bubble but she thinks he's only doing well since it's not the cold/flu season. She's still concerned about his immune system. I was okay with all of that since it's been the hot topic of all things Trace at the last few appointments. She wants immune labs drawn in October at our appointment with Dr. P. There has also been talk about IVIG from both Dr. K and Dr. P. This is not something I want to put Trace through. But then again, I will do anything to keep my child as healthy as possible. Double edged sword. She ordered an Echo and EKG as Trace's heart hasn't been checked in 2 years. No concern, just procedure to check these things. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">August 9-11 - Trace was hospitalized for infection. It was a huge blow to have him back in the hospital so shortly after receiving Pneumovax. It proves everyone right. It's sad. This was an entirely different hospital experience as we were on vacation. We arrived in Port Aransas Friday at 4:00 PM. We noticed Trace was very fussy all day, but chalked it up to traveling. We took him down to the beach and he played in the water for about 20 minutes. He loves the ocean! He was exhausted so we went up to the condo and gave him a bath and dinner. He went to bed around 7:30 only having one small myoclonic seizure. He woke about 9:00 and was having a tonic clonic seizure. We administered Diastat and the seizure lasted a total of 30 minutes. This is an extremely long seizure for Trace. After family made a couple of phone calls, it was decided we take Trace to Driscoll Children's in Corpus Christi. This is something I should have researched before we even left town. But Trace has been doing so good lately I didn't feel the need. Stupid mistake, which will never happen again. We arrived and the ER was full and we were told to fill out paperwork and wait for triage to call us. This made me crazy as I'm used to my child being taken in immediately at CMHH. Trace remained postictal for over an hour. During that hour he spiked a fever of 102.4. </span><span style="font-family: 'Trebuchet MS', sans-serif;">I explained how we needed to be seen before the child with the small cut on his cheek and they didn't seem to care. That child went in and came out with a bandaid on his cheek and we were still sitting there. So I had to get a little more demanding. </span><span style="font-family: 'Trebuchet MS', sans-serif;">They finally made room for us after I explained how Trace's organs could be shutting down to the triage nurse. I know that's a little extreme, but they just weren't getting the severity of things. They had never seen a Mito child and had no idea how fast things happen. You do what you have to do for your child because no one is going to do it for you. Learned that lesson many years ago. The ER doctor contacted the pedi neuro team at CMHH. They instructed Driscoll doctors what to do. I did have Trace's medical protocol letter and it was a great help to the doctors. It also turned out to be something many doctors, nurses and med students wanted to read. Trace was admitted and we arrived in our room at 4:00 AM. Saturday AM his labs showed infection and it was decided that Trace not be released until Sunday at the earliest due to his immunodeficiency. There's that word again! All in all the team at Driscoll did great and continued to consult with CMHH pedi neuro the entire time. It was a learning experience for all. Thank you to all who prayed for our little Mister!</span></div>
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<b><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16.0pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
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<b><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16.0pt; line-height: 115%;">Laurie</span></b></div>
Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com1tag:blogger.com,1999:blog-4344360893029238313.post-47193081798379980062013-05-14T18:21:00.000-07:002013-05-14T18:21:14.800-07:00Am I Really THAT Strong?
<span style="font-family: "Trebuchet MS","sans-serif";">Am
I Really THAT Strong?? The answer is Yes and No I guess.<span style="mso-spacerun: yes;"> </span>Some days I wake up and feel I can take on
anything.<span style="mso-spacerun: yes;"> </span>Some days I wish I could stay
in bed and miraculously it will all get better.<span style="mso-spacerun: yes;">
</span>I can say the Yes happens way more than the No.<span style="mso-spacerun: yes;"> </span>I wish I could say I am strong all the time,
but I’m just not.<span style="mso-spacerun: yes;"> </span>I fight hard.<span style="mso-spacerun: yes;"> </span>I love even harder.<span style="mso-spacerun: yes;"> </span>I appreciate every day.<span style="mso-spacerun: yes;"> </span>I take nothing for granted.<span style="mso-spacerun: yes;"> </span>I can adapt to change. <span style="mso-spacerun: yes;"> </span>My faith is strong. <span style="mso-spacerun: yes;"> </span>I am a Mother Warrior.<o:p></o:p></span><br />
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<span style="font-family: "Trebuchet MS","sans-serif";">I
am weak.<span style="mso-spacerun: yes;"> </span>I am vulnerable.<span style="mso-spacerun: yes;"> </span>I do cry.<span style="mso-spacerun: yes;">
</span>I do scream.<span style="mso-spacerun: yes;"> </span>I’m tired.<span style="mso-spacerun: yes;"> </span>I do feel anger.<span style="mso-spacerun: yes;"> </span>I do feel resentment.<span style="mso-spacerun: yes;"> </span>I am not perfect.<span style="mso-spacerun: yes;"> </span>I never will be perfect.<span style="mso-spacerun: yes;"> </span>I love with a love so strong that I’m not
sure anyone else has ever felt.<span style="mso-spacerun: yes;"> </span>I am
blessed.<span style="mso-spacerun: yes;"> </span>I’m lonely.<span style="mso-spacerun: yes;"> </span>I’m happy.<span style="mso-spacerun: yes;">
</span>I’m grateful.<span style="mso-spacerun: yes;"> </span>I’m real.<span style="mso-spacerun: yes;"> </span>Writing all of this down makes me feel good.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif";">This
is all still so new to me.<span style="mso-spacerun: yes;"> </span>How can it be
new, because it’s so old?<span style="mso-spacerun: yes;"> </span>I feel I’m not
supposed to feel any more feelings about everything that’s happened in my life
because it’s been too long. <span style="mso-spacerun: yes;"> </span>I shouldn’t,
couldn’t, still possibly feel the same feelings.<span style="mso-spacerun: yes;"> </span>Why do I?<span style="mso-spacerun: yes;">
</span>Am I weak?<span style="mso-spacerun: yes;"> </span>It will never be okay,
it will never go away.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif";">I’m
sad.<span style="mso-spacerun: yes;"> </span>So very sad.<span style="mso-spacerun: yes;"> </span>No matter how long ago I heard the words
Mitochondrial Disease they won’t go away. The words <i style="mso-bidi-font-style: normal;">There Is No Cure, There is No Treatment</i> still echo in my mind every
day. <span style="mso-spacerun: yes;"> </span>I have tried so hard to beat it –
but it keeps winning. <span style="mso-spacerun: yes;"> </span>Why can’t I win? I’m scared.<span style="mso-spacerun: yes;">
</span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif";">I’m
angry.<span style="mso-spacerun: yes;"> </span>I feel guilt because of my
anger.<span style="mso-spacerun: yes;"> </span>Why do I feel guilty for feeling
angry?<span style="mso-spacerun: yes;"> </span>It makes me feel terrible that I
feel anger. <span style="mso-spacerun: yes;"> </span>I should never let anger get
in the way of happiness.<span style="mso-spacerun: yes;"> </span>So I try not to
let it overcome happiness.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I try.<span style="mso-spacerun: yes;"> </span>I
focus on happiness and joy.<span style="mso-spacerun: yes;"> </span>I focus on
love. <span style="mso-spacerun: yes;"> </span>On hope. <span style="mso-spacerun: yes;"> </span>I focus on the courage to fight each day with
a smile on my face.<span style="mso-spacerun: yes;"> </span>I have faith to help
me through all of this.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif";">I’m
tired.<span style="mso-spacerun: yes;"> </span>So very tired.<span style="mso-spacerun: yes;"> </span>But not near as tired as he is.<span style="mso-spacerun: yes;"> </span>His little body fights so hard every day just
to be here.<span style="mso-spacerun: yes;"> </span>I can’t be tired, I
won’t.<span style="mso-spacerun: yes;"> </span>He fights so hard.<span style="mso-spacerun: yes;"> </span>How can I complain that he hasn’t let me
sleep one single night in the last five years?<span style="mso-spacerun: yes;">
</span>He hasn’t slept one single night in the last five years either.<span style="mso-spacerun: yes;"> </span>It has to be so much harder for him.<span style="mso-spacerun: yes;"> </span>I can’t be tired.<span style="mso-spacerun: yes;"> </span>I’m so happy he’s still here with me to wake
me up and feed him during the night.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif";">I
want to fix him.<span style="mso-spacerun: yes;"> </span>I can’t.<span style="mso-spacerun: yes;"> It's the worse feeling. </span>The sick truth – Mito will most likely take
my sons life.<span style="mso-spacerun: yes;"> </span>A crash could happen at any time that he may not be able to bounce back from. Mito will be the reason my son
leaves me to be with Him.<span style="mso-spacerun: yes;"> </span>That’s
something no parent wants to hear.<span style="mso-spacerun: yes;"> </span>It has
made me view life entirely in a new way. <span style="mso-spacerun: yes;"> </span>A better, more appreciative way. I never knew children who died before.<span style="mso-spacerun: yes;"> </span>I never thought of it happening to me.<span style="mso-spacerun: yes;"> </span>It’s the worst thing anyone could ever
experience.<span style="mso-spacerun: yes;"> </span>I’m not saying losing a
loved one is easy, it’s just horrific to lose your own child.<span style="mso-spacerun: yes;"> </span>I’ve seen too many little ones get their
angel wings way too soon.<span style="mso-spacerun: yes;"> </span>Mito is life
changing for the better and for the worse.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;">
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<span style="font-family: "Trebuchet MS","sans-serif";">I
try to be as proactive as I can when he is ill.<span style="mso-spacerun: yes;">
</span>It’s the only thing I can do to help him, but is it enough?<span style="mso-spacerun: yes;"> </span>Sometimes I wonder if I’m being too
proactive, to the point I feel crazy.<span style="mso-spacerun: yes;">
</span>Should I take him to the hospital, should I not??<span style="mso-spacerun: yes;"> </span>I pack a bag, I wait, and then we always end
up going.<span style="mso-spacerun: yes;"> </span>When I get there I realize I
shouldn’t have waited.<span style="mso-spacerun: yes;"> </span>I should have had
him there sooner.<span style="mso-spacerun: yes;"> </span>If I did maybe his
stay wouldn’t have been so long.<span style="mso-spacerun: yes;"> </span>I blame
myself.<span style="mso-spacerun: yes;"> </span>Always, everytime.<span style="mso-spacerun: yes;"> </span>A simple thing as vomiting twice in 4 hours can
dehydrate my child for 23 hours.<span style="mso-spacerun: yes;"> </span>I wish
I could give fluids at home to keep him out of the hospital.<span style="mso-spacerun: yes;"> </span>Who says that?<span style="mso-spacerun: yes;"> </span>What is sane or even close to normal about
that?<span style="mso-spacerun: yes;"> </span>Nothing. <span style="mso-spacerun: yes;"> </span>I have another child who vomited for 2 days
straight and never even got close to being in the hospital.<span style="mso-spacerun: yes;"> </span>Her body can fight back.<span style="mso-spacerun: yes;"> </span>My son is there every single time he gets the
smallest illness.<span style="mso-spacerun: yes;"> </span>I have to face the
reality it is the best place for him.<span style="mso-spacerun: yes;"> </span>No
matter how many sticks he has to endure.<span style="mso-spacerun: yes;">
</span>It’s worth it in the end to help him get better.<span style="mso-spacerun: yes;"> </span>He can’t get better on his own.<span style="mso-spacerun: yes;"> </span>He has to have help and it’s my job to make
sure he gets it.<span style="mso-spacerun: yes;"> </span>I know I can make it
through his tears, his screams.<span style="mso-spacerun: yes;"> </span>Because at
the end of it all, he looks at me and I see how much love he has for me.<span style="mso-spacerun: yes;"> </span>He always hugs me.<span style="mso-spacerun: yes;"> </span>I am his mom and I just helped him feel
better at his worse.<span style="mso-spacerun: yes;"> </span>It’s truly
rewarding, even in the worse of circumstances.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif";">He
fights for his life. Every day he should receive a gold medal for dealing with
“his normal”. <span style="mso-spacerun: yes;"> </span>Every child with Mito
should.<span style="mso-spacerun: yes;"> </span>Every special needs child
should.<span style="mso-spacerun: yes;"> </span>Life should be fun.<span style="mso-spacerun: yes;"> </span>His fun is so different.<span style="mso-spacerun: yes;"> </span>But he does have fun. <span style="mso-spacerun: yes;"> </span>He has accomplished so many things I really didn’t
think would be possible when he was diagnosed.<span style="mso-spacerun: yes;">
</span>He gives me hope.<span style="mso-spacerun: yes;"> </span>His smile
lights up my world.<span style="mso-spacerun: yes;"> </span>His life is hard,
but he just doesn’t seem to let it get him down.<span style="mso-spacerun: yes;"> </span>He is an example of extreme joy.<span style="mso-spacerun: yes;"> </span>I am here to make every single day the best I
can for him.<span style="mso-spacerun: yes;"> </span>No matter what.<span style="mso-spacerun: yes;"> </span>No matter how hard it is. <span style="mso-spacerun: yes;"> </span>No matter how many doses of meds he fights, no
matter how abnormal it really is. No matter how much he cries.<span style="mso-spacerun: yes;"> </span>No matter how hard I cry.<span style="mso-spacerun: yes;"> </span>I will make it the best I can.<o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif";">I
pray.<span style="mso-spacerun: yes;"> </span>I have faith.<span style="mso-spacerun: yes;"> </span>I believe in the power of prayer.<span style="mso-spacerun: yes;"> </span>I believe God chose this life for our family.<span style="mso-spacerun: yes;"> </span>I have to.<span style="mso-spacerun: yes;">
</span>It helps me make sense of all of this craziness.<span style="mso-spacerun: yes;"> </span>I don’t blame God, I don’t blame myself.<span style="mso-spacerun: yes;"> </span>At least not anymore.<span style="mso-spacerun: yes;"> </span>Yes, I’m guilty of asking God why he would do
this to my child, to anyone’s child.<span style="mso-spacerun: yes;"> </span>I
have felt guilt that I had to have done something wrong to cause this horrible
disease for my child.<span style="mso-spacerun: yes;"> </span>I didn’t do anything.<span style="mso-spacerun: yes;"> </span>God knew Trace could handle this.<span style="mso-spacerun: yes;"> </span>He knew his strength before he was born.<span style="mso-spacerun: yes;"> </span>He created him.<span style="mso-spacerun: yes;"> </span>He put him here for a much bigger purpose
than playing baseball, running, talking or any other normal child things. I’m not
downplaying those things.<span style="mso-spacerun: yes;"> </span>They are
wonderful.<span style="mso-spacerun: yes;"> </span>I have a child without
special needs.<span style="mso-spacerun: yes;"> </span>I push Peyton to excel in everything
she has ever done.<span style="mso-spacerun: yes;"> </span>I will never stop
being proud of all of her accomplishments.<span style="mso-spacerun: yes;">
</span>Peyton is just as special to me as Trace.<span style="mso-spacerun: yes;">
</span>Just as loved.<span style="mso-spacerun: yes;"> </span>I am so
blessed to be her mother.<span style="mso-spacerun: yes;"> </span>I have received the greatest of gifts.<span style="mso-spacerun: yes;"> </span>I am a mother to a special child and a
special needs child.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif";">It’s
not easy.<span style="mso-spacerun: yes;"> </span>Nothing as amazing and
rewarding as being a mother should be though.<span style="mso-spacerun: yes;">
</span>I am not your typical mother, I am a Mother Warrior.<span style="mso-spacerun: yes;"> </span>I will fight until the end.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: "Trebuchet MS","sans-serif";">Happy Mother's Day to all Mother Warriors.</span></div>
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<span style="font-family: "Trebuchet MS","sans-serif";"><o:p><span style="font-family: Times New Roman;">
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
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</span><b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Laurie<o:p></o:p></span></b></div>
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Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com1tag:blogger.com,1999:blog-4344360893029238313.post-9335906371912210092013-05-02T09:18:00.002-07:002013-05-02T09:18:49.264-07:00Catching My Breath<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">There have been so many changes happen in our family the last couple of months. I'm still trying to catch my breath. Change is good - well most of it is good. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">We have decided to sell our home. This decision wasn't an easy one. I live in my dream home - I designed it and my father built it. It is on a tranquil few acres and I have loved every minute of living in our home. Unfortunately all of our plans we had for our future when we built this home have changed. Our children were going to enjoy the country life. Playing sports outside, fishing and building hideouts in the woods. Only Peyton has truly been able to experience those things and now I guess she's too old to build hideouts anymore. Trace's mito doesn't allow him to enjoy being outside but for very short periods. Thomas' job is 3 hours away and he is only here a few days a month. Peyton will be leaving for college after next year. I don't want Trace and I to be all the way out here alone. It's so lonely sometimes. Trace is in bed by 6:30 and that makes for a long evening all by myself when Peyton is at friends or dance. I can't image that everyday - I'm just not that type of person. So we are moving closer to family and friends.</span> </div>
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<span style="font-family: "Trebuchet MS", sans-serif;">I was laid off from my job of 17 years in March. This was sort of a surprise, but I sort of knew it could be coming too. I had a really hard time with not having a job at first. I felt inadequate and worthless. Like I couldn't provide for my family. I have now decided it wasn't such a bad thing after all. I'm not really sure how I worked full time, managed Trace's care and all the other regular mom and homemaker duties. Guess that's why I was so forgetful, to the point of embarrassment sometimes. I have decided to take this time and really focus on Trace's care and have volunteered to help with the UMDF. It has really been a blessing. There's a reason for everything and this was just part of a bigger plan. Loving my time with my little Mister!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">We found out last week that Trace has immune deficiency. He can't and hasn't been able to fight an infection without being admitted to the hospital. As Dr. P said to me "he's so lucky he has not had a severe infection such as pneumonia". I do feel so lucky in that aspect. However, it's still a big let down. Dr. P doesn't know why his labs were good in November, but had non-existenet titers this month. She expressed her concern and we chose to do another pneumovax shot to try and get them up. He had one over a year ago and it should of lastest longer - like 5 years. Nothing goes as it should when Mito is in the picture though. He did good with the shot and we're hoping to see improvement with it. If not IVIG is another option to keep him healthy.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">We met with the pediatric neurologist Dr. S last week to discuss placing a Vagus Nerve Stimulator (VNS) in Trace. He said Trace is a good candidate. Trace's seizures do not just affect one part of his brain. If that was the case he could remove that part and Trace could be seizure free. Since Trace is taking 7 doses of 3 seizure medications per day and is still seeing seizure progression this is our best option. He also told us Trace was not too small. He said he can place the device under his pectoral muscle so that it doesn't protrude too much from his body and bother him. This was a concern of Dr. K's due to Trace's severe OCD. We were told to have a contingency plan in case Trace completly flips out and was constantly tugging on it. Dr. S told us there are no guarantees with VNS - it can greatly improve seizure activity, improve it slightly or not at all. I would be so grateful for even the slightest improvement. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">We are still discussing VNS with Dr. P and Dr. K. They have both expressed concern with infection. Due to what we found out last week, we are waiting to see if the pneumovax brings up his titer levels. Dr. P and Dr. K have sort of approved, pending the new labs. Dr. P will run either IVIG or IV antibiotics during the procedure to help prevent any infection. We meet with his epileptologist Dr. V in 3 weeks to discuss everything further with her. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Some other things going on - Peyton was a mentor at Special Olympics. I'm so proud of her for volunteering her time for others. It was a weekend event starting with a send off parade at school, dinner and dance that evening and events the next day. She said it was so fun. Her student was a beautiful sweet girl. Peyton said she could relate to her easily because she was a lot like Trace. Loves the IPad, movies and had some of the same issues. Peyton was requested by the girls parents to be her mentor again next year. Proud mommy moment!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Another proud mommy moment - Trace has began to use a fork to feed himself. Trace doesn't like eating and only eats certain foods. He doesn't self feed much yet and only uses his fingers. He </span><span style="font-family: "Trebuchet MS", sans-serif;">doesn't eat at the table much either. He may be 5 years old and this usually happens when children are about 2. It doesn't make it any less spectacular though. It's all about the little things right? Maybe we can try to potty train this summer?? This is an amazing achievement for my little Mister! </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">We also attended the UMDF Family Day at Morgan's Wonderland a couple of weekends ago. It was so much fun as usual and we met lots of new families. Trace had an amazing time but was so tired by noon. So we went on one last train ride before leaving. Here are some pictures!</span> </div>
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<span style="font-family: "Trebuchet MS", sans-serif;">I'd like to ask you to pray for some of our Mito friends. They are very sick and have been in the hospital this week. Please pray for them to quickly get better and be able to return home to their families. It breaks my heart to see these children in so much pain, they already go through too much. Thank you!</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Laurie<o:p></o:p></span></b><br />
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<br />Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com2tag:blogger.com,1999:blog-4344360893029238313.post-64773516329696001532013-04-13T14:10:00.003-07:002013-04-13T14:10:47.566-07:00Hospital Stay<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">It's been over a month since I've written anything. I have so much to say I could write for hours. But unfortunately I don't have hours. The purpose of this post is solely to journal Trace's latest illness and hospitalization. I could easily forget important details (as shocking as that may sound!!) if I don't get it down before something else happens. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Friday 04/05/13 Trace did not want to eat dinner. This is not unusal for Trace, especially since he was experiencing a lot of gas. I didn't think much of it. I went about our evening routine and got him ready for bed at 6:00 PM. He had a wet diaper at that time. I put him to bed at 6:30. He woke up about 7:30 and drank about 4 oz of water. Throughout the night he woke a couple of times for a few sips of water. He did not eat during the night, which he usually will do about 12:00 - 3:00 AM.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Saturday 04/06/13 Trace woke about 6:00 AM and seemed in a happy mood. I was tending to the dogs and making meds in the kitchen when I heard him fall in the living room. He had an atonic seizure and feel and hit the left side of his face on the wood floor. I picked him up, consoled him and he was postictal for about 30 minutes. At 6:30 AM he vomited. At 7:00 AM he drank part of his mito cocktail. He would not drink but 6 sips of juice after 7:00 AM. I noticed he had not wet his diaper yet. He always has a wet diaper within 15 minutes of waking. With the seizure and vomit I guess the diaper wasn't high on the priority list. Since he had no urine output, refused to drink anything and vomited I decided it was time to take him to the ER. I got us all packed in case we had to stay but hoped we didn't.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Saturday Afternoon - I put Trace in the car around 12:00. He drank about 3-4 oz of juice about 30 minutes into the drive and immediately vomited it up. I had to pull over and clean him, change him, and clean the carseat the best I could with baby wipes on the side of the road. Not so fun. I just kept thinking please God don't let me get this if it's a virus. I don't want to be sick with Trace in the hospital. Been there, done that, miserable. We arrived at CMHH and were immediately sent back. Did the usual stuff, metabolic labs, IV fluids, etc. All labs looked good with the exception of ammonia (high). Trace still had no urine output and a bolus was ordered and administered in 30 minutes. He finally had a wet diaper about 30 minutes later. It had been a total of 22 1/2 hours since he last urinated! Crazy for my child who blows up an overnight diaper about every 2 hours!! We were told Dr. K wanted us to stay overnight to run fluids and watch him. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Sunday 04/07/13 Trace did well overnight and had a wet diaper. He continued the good trend and we were sent home late Sunday afternoon. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">I have kept him home from school this week due to his immune system being down. He did attend private therapy on Tuesday, but was very low energy and didn't get much accomplished. He had an appointment with Dr. P on Wednesday. That will be a whole other post. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">I hope I can find some time soon to post about Easter, a couple of big doctor appointments, and all the other new things going on in the Wehring family. Oh, and maybe even include some pictures - but I have to download them first! So for now this is it :-) </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Thanks for all of your prayers for my little Mister!</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Laurie<o:p></o:p></span></b><br />
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Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com1tag:blogger.com,1999:blog-4344360893029238313.post-89243184329311477992013-03-04T07:34:00.000-08:002013-03-04T07:34:55.387-08:00Changes<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">Since his illness at the end of January, Trace has had some changes. He has experienced some atonic seizures, more absence seizures and longer postictal states. All of these things are probably due to the illness, but didn't get much better after the illness. It does take Trace a while to get back to his baseline after an illness. These are some pretty big changes in my eyes and they needed to be addressed sooner rather than later. Being proactive is our best and only defense against Mito. So we had an appointment with his epileptologist on 19 Feb 2013. Dr. V said the changes are most likely due to the illness. The immediate plan is to increase his AM dose of Onfi. If the atonic seizures continue, we have the option to remove him from Topamax and put him on a new med designed specifically for atonic seizures. Messing with seizure medications is always complicated and changing medications can often cause seizures to worsen rather than get better. The other option, which has been brought up to us before, is Vagus Nerve Stimulation (VNS). It's an option we are seriously considering now. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Reason 1 - Trace will most likely never be seizure free on medication alone. He's had seizures for 4 years now. And I can honestly say he's never been seizure free. That is and has always been our ultimate goal. </span></div>
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<span style="font-family: Trebuchet MS;">Reason 2 - Trace is taking 7 doses of seizure medications per day. Simply put - that's a lot. He is on the max dose of two. The third medication we just upped the AM dose. We are seeing behavioral and sleep issues since adjusting the medication. This has happened before with this medication. If they continue, we will have to decrease the dosage back to where it was before. We seem to play this yo-yo game a lot. I really can't imagine adding any more seizure medications.</span></div>
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<span style="font-family: Trebuchet MS;">Reason 3 - The less seizure activity Trace has the better his development gets. We have seen this happen in the past where we have added or adjusted a med and all of a sudden the "fog lifts" and we get to see more of our boy. The more seizures, the greater risk of regression. </span></div>
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<span style="font-family: Trebuchet MS;">There are a lot of other reasons, but these are the top three. </span><span style="font-family: "Trebuchet MS", sans-serif;"><span class="caps">VNS</span> Therapy involves a minimally invasive procedure. Trace's mito specialist, epileptologist and a pedi neurosurgeon will all be working together for his procedure. VNS is not brain surgery. The VNS has minimal side effects and the procedure is completely reversible. </span></div>
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<span style="font-family: Trebuchet MS;">We have time to think about what will be the best decision for Trace. Dr. V will not schedule the surgery until the summer. The risk of infection due to all the illness at this time of year is too great for Trace. So in the meantime we have some thinking to do, prayers to say and will hold on to the hope he will miraculously be seizure free!</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Laurie<o:p></o:p></span></b></div>
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Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com1tag:blogger.com,1999:blog-4344360893029238313.post-7076772045832971452013-02-04T10:23:00.002-08:002013-02-08T09:18:50.567-08:00Trace Update<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">Here's the update on everything from Trace's stay at CMHH and the past few days. Sunday, Jan 27, Trace seemed a little run down, had a slight cough and chest congestion. Seemed to be the same illness he had just recovered from in December. He spiked a fever Sunday evening about 6:30. Ran fever all through the night, despite ibuprofen. Monday AM I called the pediatrician and set up an appointment for that afternoon thinking it could be handled like the last illness. Trace seemed to be going downhill really fast by late morning. By 10:01 AM I emailed the Mito Clinic nurse and asked what Dr. K thinks. At 10:07 AM she responded with ER Now!! The 6 minutes in between those 2 emails were one of the scariest moments of my life with Trace. And I have to say I don't scare easily anymore. I was already getting things together for the ER, as I figured they would send me there due to the fact I couldn't get the fever down and it seemed to keep creeping higher. I stood Trace beside me to grab some things from the bathroom cabinet, when he collapsed and had a terrible tonic clonic seizure. I was able to catch him before he hit the ground, his entire body convulsed the worse I've seen in years. Once it stopped he was unable to hold up his head, stand or even open his eyes for more than 2 seconds. This postictal state lasted almost 2 hours. Not exactly a fun drive to CMHH. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Only Trace can rock the mis-matched jams this well!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">I arrived at the ER, which was ready for us as Dr. K let them know we were on our way. I guess you could call that a "perk" of mito. No waiting in the ER. Next they drew labs, started IV fluids, and all the other normal stuff that happens to my little guy in the ER. Keeping him from having to go through all that is the reason we try to keep him home despite how ugly things get. His Daddy arrived at 4:00 - Trace and I were both very happy to see him. Trace because Daddy brought the motherload of movies & candy and me because he brought food. I hadn't had a bite until then, let's just say that cafeteria sandwich was the best ever :-) We finally were moved up to a room about 5:00. They had to reset Trace's IV - poor sweet baby. This was the 4th time he was stuck of 7. His poor hands are still so bruised. Around 6:00 Trace spiked another fever and had another tonic clonic seizure where he was postical for a long period of time again. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Smiling despite everything going on in his little body</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">The next 3 days were long and frustrating. Trace's labs never grew anything pointing to a bacterial infection, however he was treated with antibiotics. His fevers would come and go. He developed a rash. Wouldn't eat and drink properly. Continued with seizures, but they got better over the course of our stay. I was never so happy to hear we were going home. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Practicing his basketball skills</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">My sweet angel</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">He did well at home until Monday. He had several absense & atonic (drop attack) seizures Monday AM. Trace has not experienced atonic seizures before this illness. I really hope they don't continue. He already has myoclonic, absence, and tonic clonic seizures. We have been told that over the course of Trace's life he will develop different types of seizures and they could become worse. I really hope and pray that the atonic seizures are just something from the illness and nothing that's going to hang around. They are dangerous and Trace could really hurt himself. </span></div>
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<span style="font-family: Trebuchet MS;">Thanks to everyone who prayed for Trace during the past couple of weeks! </span></div>
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<span style="font-family: Trebuchet MS;">Thanks to all the doctors, nurses and friends who cared for Trace!</span></div>
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<span style="font-family: Trebuchet MS;">Thanks to my brother for delivering the best dinner and games!</span></div>
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<span style="font-family: Trebuchet MS;">Thanks for all of your continued prayers for my Mister!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Peyton dancing with Trace on the patio Saturday night - Pure LOVE!!</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Laurie<o:p></o:p></span></b></div>
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Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com0tag:blogger.com,1999:blog-4344360893029238313.post-62494436551107397132013-01-11T11:21:00.001-08:002013-01-11T11:21:21.794-08:00New Wheels, New Braces, New Bed<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">The last couple of weeks have been filled with new things for Trace. </span><span style="font-family: "Trebuchet MS", sans-serif;">A few months ago we decided that it was necessary to get Trace a medical stroller. His feet were dragging the ground and head well above the head rest in his baby stroller. He must have a stroller to ride in as he does not have the energy to walk distances. I held off as long as I could in hopes that he would become stronger and able to walk better distances. Well that miracle didn't happen. Trace is weak, extremely loose jointed and has no ability to walk distances without tiring out completely. There's no way he could make it during a day at the clinic or even through WalMart without being held. He's 5 years old, 32 lbs and 42" tall, then add the 25 lb diaper bag including meds, diapers, wipes, extra clothing, juice cups, etc. Too much for me to carry. The medical stroller arrived last Friday. I know it will be better for Trace and is customized to his personal needs. BUT it's heavy! It does break down and I can lift it into the car that way, but wow. I try not to put too much focus on what the future holds, but this one made me think a little. How in the world will I do this if needed when he's 10? I'm still going to pray for the miracle he strenghtens and is able to get himself around! In the mean time, guess I better start lifting some weights :-) </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Monday Trace received new ground reactive ankle foot orthotics (AFOs). He has worn AFOs before, but these are a different type of brace. He couldn't even take one step in them the first day. But my resilient little Mister was doing much better by the second day. And the third even better yet. These were another thing I didn't want Trace to deal with again - but that's not what matters. What matters is how he can possibly learn to walk properly and not cause any more problems for the future. Dr. Y feels these are very necessary for Trace. I trust Dr. Y, he's never steered us wrong, and listens to my Dr. Mom opinions as well. So I willingly gave these a try in hopes they'll make a difference for the better for my little guy. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Yesterday we received Trace's sleep safe bed. I would have loved for him to be able to sleep safely in the bunk beds that were in his room. But the fact is that's not going to happen any time soon. So out with the bunk beds and in with the sleep safe bed. Trace will be sleeping in his bedroom from here on out. This is a hard one for me. Trace has slept in his crib in my room since birth. There are several reasons for it. He stills wakes several times a night, easier for me to be right there. He has seizures, wears oxygen and uses a pulse oximeter, easier for me to be right there. We'll see how this goes. I know it's best for Trace. It's more of a "normal" thing to be in his own room. Mommy will probably be sad though.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">I never wanted my son to have any of these new things. But it's not about me now is it :-) It's about what's best for Trace, what makes his life easier and what's necessary. I feel he's fortunate to have these new things. They will make his life better. It's just another change in our lives. It's all about moving along with the change and making the best of it. I think so far I've learned to embrace the changes life has given me and make the best of the worst. Sometimes it may take me a little longer, but eventually I catch up. I'll get here too and it'll all become normal in the blink of an eye. </span><span style="font-family: "Trebuchet MS", sans-serif;">Just our new normal.</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Laurie<o:p></o:p></span></b></div>
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</span>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com6tag:blogger.com,1999:blog-4344360893029238313.post-55906857013326105022012-12-13T05:53:00.002-08:002012-12-13T05:53:24.605-08:00Happy Birthday Trace!! & Thomas!!<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">My baby is 5, I can't believe it! This past year has probably been his best so far. He's worked so hard this year which has lead to some great developmental progress. Thank you to all Trace's therapists and teachers for never giving up on my baby and challenging him every week. His health has been at an all time best this year too. Thanks to his wonderful doctors and nurses who make sure he's receiving the best care and treatment possible. Trace has managed to stay out of the hospital and healthy for the longest streak ever. This is most exciting!! It has really given me hope. I live everyday of my life to make his better and seeing it finally get better is AMAZING!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">We celebrated his birthday this weekend with lots of friends and family at Chuck E. Cheese. Trace loves CEC! This was by far the best birthday ever - he interacted with CEC, played lots of games, opened presents, ate some pizza and for the first time ever blew out his own birthday candle!! If you can't tell I'm super excited about that and think I even yelled it out with excitement that day. It's all about the little things right?? </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">We also took family photos this weekend with <a href="https://www.facebook.com/#!/StephkPhoto">Stephanie k Photography</a>. We were unable to do them last year because Trace was admitted to the hospital and I never rescheduled as it took him a while to totally recover. Despite Trace not being very cooperative, constantly moving, and our family being the traveling circus it is, I have some truly amazing photos. Stephanie is one talented photographer! Her love for photography really shines in her work. In her words - <em>there are the funny moments and the serious moments and the sweet moments and they are all real and they are all a story about your family</em>. A huge THANK YOU!! to <a href="https://www.facebook.com/#!/StephkPhoto">Stephanie k Photography</a> for giving us these beautiful pictures which will tell our story forever. And for her generosity in donating her fees to help fight Mitochondrial Disease. Thank you again sweet friend!</span></div>
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<span style="font-family: Trebuchet MS;">After family photos we headed out to the christmas tree farm. We decided we would start this new tradition for our family. I'm happy we did because it was a lot of fun! Trace loved the hayride and helped daddy cut down the tree. Well he helped by rubbing dirt in Daddy's hair as he was cutting the tree. I thought it was funny, Daddy did too, well probably not as much as I did :-) </span></div>
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<span style="font-family: Trebuchet MS;">As far as Trace's December 13th, he spent it getting casted and fitted for ground reaction ankle foot orthotics. Not something I want for him. We've tried AFOs before and they were really hard for Trace to walk in and caused him to fall down a lot. I hope he does better this time and they don't hinder his ability to get around. It took him 5 years to get himself around good and I don't want to see him struggle. His orthopedic doc is proud of how he has compensated for all of his disabilities, but feels he really needs the ground reactive AFOs. Regardless of all the AFO stuff I was able to spend the day with sweet baby. Happy Birthday Mister! </span><br />
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<span style="font-family: Trebuchet MS;">Since Thomas was lucky enough to receive the best birthday gift ever 5 years ago, he doesn't get much attention anymore on December 13th. So here are birthday wishes for my sweet husband, best friend and the best Daddy ever - HAPPY BIRTHDAY THOMAS!! Wishing we could spend it together, but I'll see you soon my love. </span><br />
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</span>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com3tag:blogger.com,1999:blog-4344360893029238313.post-51618731654401061892012-12-10T08:00:00.002-08:002012-12-10T08:00:46.913-08:00"Putt" An End To Mito 2012<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">It gives me great joy to announce "Putt" An End To Mito was another successful golf tournament!! The tournament raised $17,125 for the University of Texas Mitochondrial Center of Excellence at Children's Memorial Hermann Hospital. This money is going to help accomplish some great things for Trace and all his "Mito Friends". </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">It was a cold windy day, but despite the weather the tournament was full. It was hard to hold back the tears of joy seeing how many people showed up to support my sweet Mister. Clinic director, Mary Kay Koenig MD, spoke before tournament play to raise awareness of Mitochondrial Disease. Due to the hard work of some wonderful people, we had some amazing raffle baskets this year. Everyone had a great time playing and headed back in the club house for dinnner. As everyone enjoyed dinner, we announced and awarded prizes to the top 10 teams and drew for all raffle prizes & baskets. We ended the evening having a great time with all of our family & friends. It was an amazing day!! </span></div>
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<span style="font-family: Trebuchet MS;">I want to extend a huge THANK YOU!! to all of the players, sponsors, volunteers, everyone who made donations and all of our family & friends who helped make this tournament such a success. I can't wait until next year!!! </span></div>
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<span style="font-family: Trebuchet MS;">Trace presenting Dr. Koening with the "big check"</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Laurie<o:p></o:p></span></b></div>
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</span>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com2tag:blogger.com,1999:blog-4344360893029238313.post-42624786399776653782012-11-28T12:43:00.000-08:002012-11-28T12:43:35.891-08:00Thanksgiving & Updates<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">I'm not even sure where to begin here, so much has been going on since my last post. I started November with 1 doctor appointment on the calendar. I was extremely excited about that due to the rarity. It quickly turned into 8 appointments all in the medical center. Let's just say I'm broke from filling the car with gas and parking alone! </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Trace has continued to do well. He had some labs drawn this month, which I feel certain will all come back normal. He received his flu shot on November 7th. He did well with it, only having a few small seizures and low grade fever. Three days after the shot he acquiried a runny nose and cough. He still has it, but hasn't progressed into anything more. It just takes him a really long time to get over things. It doesn't help that I've had to discontinue use of his Veramyst due to some terrible nose bleeds the last few weeks. I guess we're going to have to discuss some other options with Dr. P next week. Trace has been repeating everything lately. He's like a little parrot! A couple of cute examples - "love you" (getting better everyday), yelling "check" over and over again at a restaurant (which in Trace language sounded like suck - real fun!), and "oh man" (oh nee in Trace language). </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Peyton received some great news last week. After giving 17 viles of blood for numerous labs (more than I've ever seen ordered and believe me I've seen a lot), chest xray, echocardiogram, and a biopsy she has been diagnosed with erythema nodosa. This form attacks the fatty tissue of the body. This is a much better diagnosis than what they had earlier thought which attacked arteries and some organs. I'm so very thankful for this! I never wanted her to have even the smallest thing wrong, but I'll take this over those really awful things any day. She's going to be just fine - and that feels so good to say. </span></div>
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<span style="font-family: Trebuchet MS;">On to Thanksgiving - This year we chose to stay home. After all the craziness that has been going on, I didn't have it in me to go anywhere. I just needed some quality time with my hubby and kiddos. It was a great decision for all of us. We cooked our first Thanksgiving dinner, which turned out delicious! Trace didn't partake in the food - his tummy wasn't feeling the greatest and there is no getting him to eat when he's like that. So it was chocolate pediasure for our little Mister. I was sad because I made him some special dishes to enjoy - oh well maybe next year. He didn't eat anything until Saturday, then he pigged out on Thomas' cheese enchiladas. Which he would not eat off a spoon, only Thomas' fingers :-) I'll never understand that child. Unfortunately, I'm terrible at taking pictures and forgot to take any of our Thanksgiving - oh well maybe next year :-) Seems to be the story of my life lately. Thomas and I sat by the fire that evening and talked about what we were thankful for. We have so many people and things to be thankful for. After my best friend gave us a little scare this month, it made us appreciate even more how lucky we are to have her in our lives. I'm so dependent on her because no matter what's going on in her own life she has always been there for me. I only wish to one day be as great of a friend as she has. We have a beautiful, warm, functional home for our family. We have each other - no matter how hard times get - we haven't given up on each other yet! That's a real accomplisment with all the stress of our everyday life. Our everyday life - no matter how hectic, stressful, and worrisome it may be - it's also full of strength, joy and love. Our two beautiful children - the biggest blessing of all. </span><br />
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<span style="font-family: Trebuchet MS;">Not the best post but I'm finding it really hard to have any spare time to update the blog right now. One more appointment before the end of this month and then on to December, which as of now only has 3 appointments scheduled. Really hoping to keep it that way! The next post should be better - I'll be posting on "Putt" An End To Mito 2012. I'm so excited to be presenting the check to the Mito Clinic next week. I don't want to say how much yet because I want it to be a surprise to them, but yes it is bigger than last year!!!!!! Thanks again for all of your support, it means the world to so many children.</span><br />
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Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com0tag:blogger.com,1999:blog-4344360893029238313.post-605420820597628802012-11-05T06:22:00.001-08:002012-11-05T06:22:25.049-08:00Halloween 2012<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">Well I have to say Halloween 2012 was a success! Trace actually understood the concept this year, which made things so enjoyable for him. Dr. Trace would start to stand up in his wagon before it was good and stopped. I helped him out and he went as fast as he could, smiling the whole way, up to the house to receive his candy. I spoke for him, but he did sign/say lots of "tank oohs" :-) He was so cute and scored more candy than ever needed for someone who's tummy can't handle too much sugar. I of course let him completely overindulge himself. That's one of the best parts about being Mommy - overindulging my kiddos. I think I smiled more than Trace that night. As I rocked his fidgety little body to sleep that night, happy tears welled up in my eyes. I couldn't believe what I had witnessed my little Mister accomplish that evening and with such joy on his face. Two years ago I wasn't sure anything like last night would be possible for my Mister. I guess he showed me!! Here are some pictures from our Happy Halloween!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Helping Sis make scary cupcakes</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Sis helping Dr. Trace get ready</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">I can't believe he let us put the mask on, even if only for a few seconds!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">He even held his own pumpkin this year!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Loaded up and ready to head out</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">He wasn't even scared of this guy - last year different story</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">No time for chatting Mom - more candy</span></div>
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<span style="font-family: Trebuchet MS;">Last pic of the night - One happy little Mister</span></div>
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</span>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com1tag:blogger.com,1999:blog-4344360893029238313.post-15826095962003493152012-10-30T13:33:00.000-07:002012-10-30T13:33:35.802-07:00My Healthy Child<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">What's up with my healthy child? At the beginning of October Peyton came to me with what she thought at the time were 3 bruises on her shin. I joked and told her to try not to be such a klutz. A week later she had these so called bruises up and down both legs and one arm. She was experiencing pain when touched and swelling. She had also been complaining of stomach cramping and feeling like she was going to pass out. I felt this was some sort of inflammation of her glands or blood vessels - definitely not bruises or a rash. I took her to the pediatrician the following morning. He examined her and said he hasn't seen it in 30 years. "It" turned out to be Polyarteritis Nodosa. An autoimmune disease which causes inflammation of the arteries, among other things if not treated properly. This didn't suprise me, or alarm me for that fact. Honestly I laughed and said only the weirdest of the weird for my children! He said "Well Laurie they are YOUR children." Ha Ha doc! He told me to give her ibuprofen and call back if she runs fever or vomits. I took Peyton to lunch and did some research. I didn't like what I read regarding long term effects of the disease. There were also better treatment options. Peyton has had some problems with use of ibuprofen in the past and taking as much as he prescribed can't be good for that. I decided we need a second opinion. I called Trace's immunologist and she referred me to rheumatology. Peyton will be seeing the rheumatologist Dr. K, who works in the clinic with Trace's specialists. I know this is the best place for her to be. During my week of inpatiently waiting to see when Dr. K could fit Peyton in, I called the appointment line to see when his first available was. It was 1 year for new patients! I guess Mito has it's perks! Peyton's appointment is next week so we'll see what happens. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">On Friday, Trace's mito specialist attended our golf tournament benefit for the clinic. I was able to show her Peyton's legs and arm. She let me know that a lot of siblings of mito patients have autoimmune issues. She also assured Peyton she doesn't have to worry all weekend because she doesn't have Mito :-). I honestly think Peyton was a little relieved to hear that. I don't blame her - what she has seen this disease do to her brother and other children would scare anyone.</span></div>
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<span style="font-family: Trebuchet MS;">So that's that - my healthy girl - not so healthy right now. I have to give her some props though, she's one tough cookie. She has continued to cheer & dance as much as her body allows. She had to miss cheering at the game Friday due to the pain and swelling. She has never missed cheering at a football game. She's cheered through fever, flu, stomach ache, torn ligaments, you name it. I know the only thing that got her through missing the game was being at her brother's golf tournament. She didn't miss the pep rally though! I love that crazy girl!!</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
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Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com1tag:blogger.com,1999:blog-4344360893029238313.post-45003135394215132052012-10-05T11:18:00.000-07:002012-10-05T11:18:34.715-07:00Two Years<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">Today marks the 2nd anniversary of Trace's diagnosis with Mitochondrial Disease. My heart aches today. I've been trying to not think about it all week, but it's in my mind always. I think about how horrible Mito is, how "lucky" Trace is, how that day played out, how blessed we are to still have him here with us, how awful I feel for the parents whose babies have grown their angel wings way too soon, what I can do to make these childrens lives better . . . </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">I believe when you have a child with a disease like Mito you live the process of grieving over and over and over. It never stops. You're in denial, angry, sad and accepting. It's so true for me. I lived through this process so many times over the last two years. I try to stay positive & accept this is just the way it is - the way it was meant to be for us. I've learned it's best to live in that stage as much as possible. But when I get hit with something new, for instance Trace starts experiencing a new type of seizure, I start it all over. I can't help it, I try not to be sad or angry, but I guess I'm human after all. There's been times within this last year that I've even thought "Does Trace really have Mito? Or is this some big mistake?" and then I answer myself "Really? Are you serious?". I've even asked his mito specialist if she was sure of Trace's diagnosis. She gave me a kind smile and reassured me he does in fact have Mito. Lucky for me I have a wonderful support system of family and friends to help me go through this process of grieving over and over and over again. Oh yeah, and a good therapist too :-)</span></div>
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<span style="font-family: Trebuchet MS;">This past year has been filled with much of the same as the year before - sleepless nights, tons of doctor appointments & therapy, hospitalizations, tests, dosing lots of meds, etc., etc. But it's also been filled with Trace becoming way more verbal than he's ever been before, achieving some of his goals for speech & occupational therapy, making wonderful memories, lots of family time, eating at restaurants <u>with</u> Trace, snuggling, and best of all lots of hugs & kisses. I feel Trace has come a long way in the last few months. The first few were a bit unsteady with lots of regression from his illness and hospitalization in December. Then everything seemed to level out and Trace has really thrived. I'm so proud of my little boy to have come so far in such a short period of time. He amazes me every single day.</span></div>
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<span style="font-family: Trebuchet MS;">What will this next year bring? I don't know. I do know that I will stay as positive as possible, enjoy every moment of every day & sleepless night, fight for Trace as hard as he fights, cherish every single skinny-armed hug and sweet kiss he gives, and even love the bad moments because although bad they are still moments we have together. </span><br />
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Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com2tag:blogger.com,1999:blog-4344360893029238313.post-69847299641544265622012-09-19T06:41:00.000-07:002012-09-19T06:41:47.848-07:00Mitochondrial Disease Awareness Week<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "Trebuchet MS", sans-serif;">On October 5, 2010 our lives changed forever - Trace was diagnosed with Mitochondrial Disease. It took us a relatively short period of time to reach this diagnosis. For many people Mitochondrial disease can take many years to diagnose. This ugly disease can present itself at birth, childhood or as an adult. </span></div>
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<span style="font-family: Trebuchet MS;">I know it seems long, but here is a very short summed up version of how Trace got his diagnosis of Mitochondrial Disease. </span></div>
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<span style="font-family: Trebuchet MS;">2 months - Trace developed reflux, he would taked hours to eat just a few ounces, and then projectile it all back out. He would scream for hours each night. </span></div>
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<span style="font-family: Trebuchet MS;">9 months - Trace started holding his head to one side a lot, told it was due to reflux. Trace received his first half of the flu shot at his 9 month checkup. A few days after the checkup Trace started jerking his arms/legs when falling asleep - we didn't think too much of it. Trace had been meeting all of his developmental milestones through this age.</span></div>
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<span style="font-family: Trebuchet MS;">12 months - Trace received his one year vaccines and the second half of the flu shot. Three days after the checkup he started having generalized seizures. He had his first one hour EEG on Christmas Eve. Trace continued to have seizures daily. We were referred to a pediatric neurologist, the first appointment we could get was 4 months away. Trace's development completely stopped. </span></div>
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<span style="font-family: Trebuchet MS;">13-15 months - During this waiting period to see the neuro I kept a daily journal of Trace's activities. Logged everything he ate, drank, meds, bm's, and all seizures. Trace is still taking a bottle due to the fact he refuses solid foods most of the time. Trace looses speech development.</span></div>
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<span style="font-family: Trebuchet MS;">16 months - Trace had his first visit with the pediatric neurologist. Trace was not having a good day and had around 50 or more seizures during the course of the day. Trace had his 2nd one hour EEG with abnormal results.</span></div>
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<span style="font-family: Trebuchet MS;">17 months - He had his first 23 hour EEG. He is still not developing. He has ataxia, extremely loose joints, is not responsive a lot of the time. He experiences constipation or diarrhea daily. </span></div>
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<span style="font-family: Trebuchet MS;">19 months - Trace had his hearing tested due to lack of speech and balance problems - normal results.</span></div>
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<span style="font-family: Trebuchet MS;">20 months - First MRI. It showed no evidence of strokes or anything else glaring as the reason for seizures. Trace was put on Trileptal to help get seizures under control. We were told we may never know the cause or what type of seizures Trace experiences. </span></div>
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<span style="font-family: Trebuchet MS;">21 months - Trace stared receiving speech, physical and occupational therapy to help his development. He had his first eye exam with good results.</span></div>
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<span style="font-family: Trebuchet MS;">22 months - Trileptal no help and Trace's seizures become more violent. 05 Oct 2009 Trace was admitted to the hospital's Epilepsy Monitoring Unit for a 3 day EEG. During this stay he was poked 16 times for numerous genetic tests & other labs, had two IVs placed, MRI, MEG, and not to mention all the leads glued to his head for 72 hours. We met Trace's epileptologist Dr. V during this stay. She visited Trace a couple times per day to check on him. I felt so bad for my baby during this stay. He had too many seizures to count. We left with a diagnosis of Myoclonic Epilepsy. We were sad he had epilepsy, but happy we had a diagnosis. I felt I could fix him now - little did I know, I will never be able to fix my baby.</span></div>
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<span style="font-family: Trebuchet MS;">24 months - Trace started walking - gait was still wide, not always steady, but he could do a few steps alone. It was a huge milestone! He was also taken off the bottle at this time.</span></div>
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<span style="font-family: Trebuchet MS;">26 months - First appointment with his peidatric orthopedic to discuss the use of leg braces. Since Trace couldn't yet perform tasks on command, Dr. Y wants to evaluate again in 6 months. Trace did eventually end up with Ankle Foot Orthotics - they were no help.</span></div>
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<span style="font-family: Trebuchet MS;">27 months - Visit with Dr. V to discuss some labs. Due to high pyruvate, extremely high lactic acid (27), myoclonic epilepsy, developmental delay, GI dysmotility, and hyperextensibility she told us Trace could possibly have Mitochondrial Disease. This was the first time I had ever heard the words Mitochondrial Disease. My first question - "Is there a cure?" Her answer - "No." We were referred to Dr. K to discuss Mito further. This was now the second most devastating day of my life. The first being the day he started experiencing seizures. But this will all be trumped by the news we receive on October 5, 2010.</span></div>
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<span style="font-family: Trebuchet MS;">29 months - We met Dr. K and dicussed the possiblity of Trace having Mito, future medical testing, sleep issues and a lot of other things. She ordered a Brainstem Auditory Evoken Potentials test, Sleep Study, Muscle Biopsy, and other genetic tests and labs. </span></div>
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<span style="font-family: Trebuchet MS;">30-34 months - Too many tests, new specialists and new issues to write. Still having seizures. Development is at 12-18 months.</span></div>
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<span style="font-family: Trebuchet MS;">October 5, 2010 Trace is diagnosed with Mitochondrial Disease. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Please educate yourself & help spread awareness of Mitochondrial Disease - for this little guy's future and all others affected by this devastating disease. They need a CURE!!</span><span style="font-family: "Trebuchet MS", sans-serif;"><br /></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">My HERO, Forever & Always</span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Laurie<o:p></o:p></span></b></div>
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Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com2tag:blogger.com,1999:blog-4344360893029238313.post-70805930898199690642012-09-12T11:07:00.000-07:002012-09-12T11:07:18.629-07:00Fun at the Beach <div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">We had a fabulous weekend at the beach. It was kind of a spur of the moment trip as it wasn't even planned until 5 days before. I still can't believe we actually did it. But we did and it turned out to be some amazing & much needed family time! </span></div>
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<span style="font-family: Trebuchet MS;">Friday - After a lovely battle with traffic, we arrived at San Luis Resort about 7:00 PM. The place was beautiful! </span></div>
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<span style="font-family: Trebuchet MS;">View from our 16th floor balcony</span></div>
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<span style="font-family: Trebuchet MS;">Trace was excited to ride the elevator as usual. He overlooked the balcony at the spash spash and was excited. We opted to not take him swimming as it was already past his bedtime and didn't want to ruin anything for Saturday. So room service for dinner, birthday flowers for me from my sweet hubby, and hanging on the balcony enjoying the view.</span></div>
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<span style="font-family: Trebuchet MS;">Nightime pool view</span></div>
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<span style="font-family: Trebuchet MS;">Rainforest Cafe Volcano Erupting</span></div>
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<span style="font-family: Trebuchet MS;">Saturday - We headed down to the pool about 9:00 AM. They had a waterslide, which Thomas took Trace down at least 15 times. The child could have done it about 15 more, but Daddy was worn out :-) </span></div>
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<span style="font-family: Trebuchet MS;">So we all headed across the street to the beach for about 30 minutes. Trace loved the waves! He pretended to jump them and laughed so hard he could barely stand. </span></div>
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<span style="font-family: Trebuchet MS;">Next we headed back up to the room to clean up and have lunch at Rainforest Cafe. I wasn't sure how Trace would do for this. He usually hates being in restaurants - maybe the loud crowded environment, maybe the fact he could care less about eating, maybe all the above. Well he did great and loved everything except the monkeys. Good thing we chose not to sit by the gorillas :-) Thanks big Sis for that advice! We all enjoyed our food and then rode the river ride. It was a really neat ride and we all enjoyed it- with the exception of the monkeys who received a very loud NO! everytime we passed. </span></div>
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<span style="font-family: Trebuchet MS;">Rainforest Cafe River Ride</span></div>
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<span style="font-family: Trebuchet MS;">After lunch we headed to tour the Bishop's Palace (yes we're pushing it a little with Trace). It was beautiful and Thomas and Peyton really enjoyed it. I had seen it as a child on family vacays. Trace did good and we managed to get out of there with not one thing broken or one screaming fit! </span></div>
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<span style="font-family: Trebuchet MS;">Peyton at Bishop's Palace</span></div>
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<span style="font-family: Trebuchet MS;">We drove down the strand since it was so close. It was pretty hot, so we parked and made only one stop - LaKings Confectionary. Good choice - Peyton loves Ice Cream which they had aplenty and Trace was in awe at all the chocolate. We bought a few pieces of chocolate, ordered some chocolate malts and rootbeer floats, then the meltdown happened - no, not the ice cream. I took Trace out, but that only made it worse. So back in we went and he was able to show me what he wanted, thank goodness. They had one of the machines where you smash the penny and all he wanted to do was turn the crank. Wish he could have just told me that before all the screaming and crying. So with goodies in hand, we headed back to the hotel where Trace & I napped and Daddy & Peyton hung by the pool. </span><span style="font-family: Trebuchet MS;">Really pushing our luck, we went to Gaido's for an early dinner at 5:30. Okay I'll admit I was scared we had hit Trace's threshold, but Thomas managed to get down his last bite of food without rushing before having to take Trace out of the restaurant. Peyton and I enjoyed the rest of our amazing dinner and back to hotel we went for more spash spash. Then some much needed nigh, nigh for the little guy and more balcony time for the rest of us.</span></div>
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<span style="font-family: Trebuchet MS;">Sunday - One more quick trip to the pool, which was surprisingly warm. Then another across the street to the beach, not so warm. A cool front pushed through late Saturday night. Trace was cold and blue, but didn't seem to mind at all. We didn't let him stay in for more than 5 minutes and we all headed up to shower and pack up to leave :-( I all of a sudden started feeling sick. Not such a pleasant ride home to say the least. Finally made it home and to bed I went. Thomas made me chicken noodle soup and I was feeling much better by evening. I was so happy I didn't get sick on Saturday though. </span><span style="font-family: Trebuchet MS;">Peyton had it on Tuesday and so far so good with Trace and Daddy. </span></div>
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<span style="font-family: Trebuchet MS;">So that was it for our spur of the moment family trip. It was amazing to get to spend so much quality time together! We are already looking forward to going back!</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Laurie<o:p></o:p></span></b></div>
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Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com0tag:blogger.com,1999:blog-4344360893029238313.post-28919043353316634982012-09-06T13:04:00.000-07:002012-09-06T13:04:21.378-07:00"Putt" an End to Mito<div align="center" class="MsoNormal" style="line-height: normal; margin: 0in 0in 0pt; text-align: center;">
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Trebuchet MS','sans-serif'; font-size: 16pt; mso-bidi-font-family: 'Times New Roman';"><o:p><b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Trebuchet MS','sans-serif'; font-size: 16pt; mso-bidi-font-family: 'Times New Roman';">“Putt” an End to Mito</span></b></o:p></span></b></div>
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<span style="font-family: 'Trebuchet MS','sans-serif'; font-size: 14pt; mso-bidi-font-family: 'Times New Roman';">October 26, 2012<o:p></o:p></span></div>
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<span style="font-family: 'Trebuchet MS','sans-serif'; font-size: 12pt; mso-bidi-font-family: 'Times New Roman';">I’m excited to announce the 2<sup>nd</sup> Annual Wehring/Schaper Invitational Golf Tournament benefiting the UT Mitochondrial Center of Excellence!!<o:p></o:p></span></div>
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<span style="font-family: 'Trebuchet MS','sans-serif'; font-size: 12pt; mso-bidi-font-family: 'Times New Roman';">The tournament is held in honor of my son Trace and his best buddy Hudson Schaper, who battle mitochondrial disease.<span style="mso-spacerun: yes;"> </span>These two little boys are true Warriors!<o:p></o:p></span></div>
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<span style="font-family: 'Trebuchet MS','sans-serif'; font-size: 12pt; mso-bidi-font-family: 'Times New Roman';">Trace & Hudson receive care from the UT Mitochondrial Center of Excellence.<span style="mso-spacerun: yes;"> </span>They provide comprehensive services to aid in the diagnosis and management of mitochondrial disease.<span style="mso-spacerun: yes;"> </span>The UT Mito Center performs research in the field of mitochondrial disease, investigating novel treatment approaches to this devastating disease.<span style="mso-spacerun: yes;"> </span>I have a profound love for this team who works to give my son, and all affected, the best quality of life.<span style="mso-spacerun: yes;"> </span>They are compassionate & brilliant!<span style="mso-spacerun: yes;"> </span>For more information, please visit </span><a href="http://www.utmito.org/"><span style="font-family: 'Trebuchet MS','sans-serif'; font-size: 12pt; mso-bidi-font-family: 'Times New Roman';">www.utmito.org</span></a><span style="font-family: 'Trebuchet MS','sans-serif'; font-size: 12pt; mso-bidi-font-family: 'Times New Roman';">.<o:p></o:p></span></div>
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<span style="font-family: 'Trebuchet MS','sans-serif'; font-size: 12pt; mso-bidi-font-family: 'Times New Roman';">Every 30 minutes, a child will be born who will develop a mitochondrial disease by the age of 10.<span style="mso-spacerun: yes;"> </span>We all have mitochondria – they exist in nearly every cell in the human body.<span style="mso-spacerun: yes;"> </span>They generate 90% of the energy the body needs.<span style="mso-spacerun: yes;"> </span>Mitochondrial disease occurs when mitochondria fail.<span style="mso-spacerun: yes;"> </span>The affected individual may have any combination of symptoms including strokes, seizures, gastrointestinal problems, swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease.<span style="mso-spacerun: yes;"> </span>The symptoms range from mild to severe for each affected person.<span style="mso-spacerun: yes;"> </span>There is <b style="mso-bidi-font-weight: normal;">NO CURE</b> for Mito – but there is <b style="mso-bidi-font-weight: normal;"><span style="color: #00b050;">HOPE</span></b>.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: 'Trebuchet MS','sans-serif'; font-size: 12pt; mso-bidi-font-family: 'Times New Roman';">For more information about registering your team or becoming a sponsor please email me or comment below.<span style="mso-spacerun: yes;"> </span>Again, THANK YOU for helping Trace get closer to a cure!<o:p></o:p></span></div>
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<span style="font-family: 'Trebuchet MS','sans-serif'; font-size: 12pt; mso-bidi-font-family: 'Times New Roman';">We are inspired by your love & friendship, by your concern & support, and by your participation in helping raise awareness & research funding for mitochondrial disease.<o:p></o:p></span></div>
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<span style="color: black; font-family: 'Comic Sans MS'; mso-themecolor: text1;"><span style="mso-spacerun: yes;"> </span>Awareness Week<o:p></o:p></span></div>
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<span style="color: black; font-family: 'Comic Sans MS'; mso-themecolor: text1;">September 16-22, 2012</span><span style="color: #00b050; font-family: 'Comic Sans MS';"><o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Laurie</span></b></div>
</span>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com2tag:blogger.com,1999:blog-4344360893029238313.post-10095461229145857052012-08-20T10:18:00.002-07:002012-08-20T10:21:59.797-07:00Special Needs Equipment<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">Last week at Trace's doctor appointment it was discussed that he needs a medical stroller and bigger bed. Trace has officially grown out of his baby stroller and crib. Shocker I know since he is almost 5 years old. I'm happy to see that they have lasted this long! It's just not safe for him to be in either anymore. I will be honest and admit I knew it was coming, but was putting it off as long as possible. I've always thought if I put if off just a little longer Trace will be able to get himself around good & learn to sleep in a normal bed. It's the part of me that yearns for my little boy to have a normal life. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">The medical stroller must last for 5 years. You just don't get to decide you don't like it and go out and buy another. Well I guess you could if you had a few thousand $$ to throw around. This means I have to think about what may be 5 years from now. That's scary. The fact is he may need extra equipment by then and the stroller must be one to accomodate those needs and grow with him. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">The decision on which bed to pick is easier. The Sleep Safe Bed seems to be our best option. It will safely contain him, is equipped so oxygen use is not a problem and doesn't look like an animal cage. Our biggest decision with this is where to put it. As of now, his crib is still in our bedroom. It's just the easiest option, as Trace wakes up at least 3 times a night. I don't think the bed will fit comfortably in our room. So we have 2 options: (1) move Trace to his room or (2) add on to our bedroom. I'm going to move him to his own room as it's the most sensible/easiest option. I know it will be hard for me as I'll be walking up and down the house several times a night. Sounds lazy, but I already know how hard it is with him in my room - especially on those nights he's up 7 times! </span></div>
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<span style="font-family: Trebuchet MS;">I pray all of this works out and I make the right decisions.</span><br />
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: 'Lucida Handwriting'; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,<o:p></o:p></span></b></div>
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Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com1tag:blogger.com,1999:blog-4344360893029238313.post-52312767150597921522012-07-21T08:14:00.000-07:002012-07-21T08:14:20.051-07:00Happy Anniversary<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">Today marks 6 years of being married to my wonderful husband Thomas. I remember standing on the beach in Cabo San Lucas like it was yesterday. It was the most amazing day! Really, it was a dream come true. I will sum up the last 6 years with these few words - love, learning, patience, laughter, joy, heartache, hugs, tears, excitement, change, and triumph. Our life hasn't exactly turned out like what we imagined that day on the beach, but together we've made it through it all. Thanks for standing by my side through this journey. I love you Babe! Wishing us many more years together!!</span> </div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,</span></b></div>
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<br /></div>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com0tag:blogger.com,1999:blog-4344360893029238313.post-61646371967527195842012-07-20T11:57:00.004-07:002012-07-20T11:57:57.864-07:00EEG Results<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">I finally received Trace's results from the video EEG done June 18-19. His neurologist's conclusion is: <em>Abnormal due to generalized myoclonic seizures in sleep; otherwise the background activity is normal with no interictal epileptiform abnormalities, which is an improvement compared to previous EEGs. </em>For someone whom she describes earlier in the report as a 4 year old boy with a history of mitochondrial disease and intractable epilepsy, I think this is great. It shows no disease progression. That is my fear - disease progression. The longer we see no progression the better for our little Mister. Of course I would love nothing more than Trace to be seizure free, but at this point that's not a reality. Although, I still have <span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US;"><strong>Hope</strong><span style="color: black; font-family: Trebuchet MS; font-size: small;">.</span></span></span><br />
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<span style="font-family: Trebuchet MS;">Trace made it through his EEG with minimal emotional damage. He did have a very hard time while they placed all the leads. Thankfully we had a good tech and she did it as quickly as possible and good enough to where they didn't have to replace any! That's no fun, especially in the middle of the night. Trace did have lots of seizures/events during his stay. This was good because at least we were able to obtain information and not have to stay any longer. We had great nurses in the EMU, as usual. And best of all ... Thomas didn't drive me too crazy! Okay, I did send him to Target 30 minutes after we were there and to the cafeteria quite often. Believe me it saved his and my sanity :-) </span></div>
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3' long stocking hat, backpack, button down "old man" pj shirt </div>
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w/ non-matching bottoms & a pacifier - only Trace could rock this look!</div>
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<span style="font-family: Trebuchet MS;">The Wehring family has been pretty busy the last month. Peyton has had two weeks of cheer camps along with other cheer activities. My little brother Mark married the love of his life Jessica on June 23rd. It was such a beautiful wedding & a LOT of fun! I'm so excited to have her as my sister. I wish them a lifetime of good health & happiness. </span></div>
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Waiting "patiently" while trying on about 15 pair of latex gloves - sshhh, don't tell Dr. V</div>
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<span style="font-family: Trebuchet MS;">Trace had a cough for about four weeks (Jun 5-July 7), which eventually required use of his inhaler to get better. </span><span style="font-family: Trebuchet MS;">Neurology appointment June 29th - we discussed how Trace continues to make small strides with his developmental progress since the use of Onfi. Dr. V said the developmental progress is the result of less seizures. She believes Trace was having many seizures which were not visually detectable to me. I felt terrible that he was going through that and was not able to tell me. Dr. V increased his Onfi dosage again as a result (10MG AM, 10MG afternnon, 10MG evening). </span></div>
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Enjoying his new toy</div>
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<span style="font-family: Trebuchet MS;">We spent the Fourth of July week with Thomas' family at their lake house. It was a nice vacation and we were able to spend lots of time with our 2 yr old neice. She's quite a hoot and loved "<em>her buddy Nate</em>" - that would be what she called Trace. A visit to Trace's pediatrician July 16th due to some weird rash he acquired as a result of a viral infection. And that raps things up around here - hope you are enjoying your summer! </span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Laurie</span></b></div>
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</div>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com0tag:blogger.com,1999:blog-4344360893029238313.post-30514719099384343362012-06-12T12:54:00.000-07:002012-06-12T12:54:44.198-07:00Quick Update<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">I just wanted to give a quick update on Trace for those who are interested and for my records. This blog has been an amazing tool when trying to remember things when it comes to Trace's health.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">All in all Trace has been doing great, no major issues or changes, so we are very happy at the Wehring house! </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Back in May we saw Trace's immunology/allergy specialist who voiced her concern over Trace's nose bleeds. I was to stop Veramyst if they continued, I did and they're still happening. We saw Dr. P again last week for Trace to receive his MMR. She said give it two more weeks off Veramyst and see his ENT if it continues. Trace had another bleed last Friday and I'm hoping it was his last. His MMR went great - he had only one seizure and no fever! The bad part was the visit lasted 4 hours, Trace had to endure a painful shot, and take extra doses of yucky meds. He's my little trooper though and did it all with only a few tears. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">He has been a little "off" the last three weeks. Not sleeping well and waking up early (4:30 - 5:00 AM). Crying outbursts lasting 30 minutes or more. Nothing we do seems to help - once again I wish he could tell me what's wrong. He has had some temperature control issues indoors. He feels very warm to the touch and is very tired. I can remember this happening around this time last year too. He's had a runny nose and cough since June 5th. It will probably hang around for another week or more. It always takes Trace quite a while to get over them. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">He's definately been feeling the effects of the summer heat. He can't be outside for 5 minutes without turning completely red and hot. He has a cooling vest, but it does no good for him when it's this hot. For those who don't know, Trace can't sweat and therefore his body can't cool itself which can lead to a heat stroke. The docs believe it's a side effect from one of his seizure meds, Topamax, what a lovely side effect right? But the docs and I both agree it's better to have the seizures under the best control possible. So it's nothing but water play for my little guy - which he is not opposed to at all!</span></div>
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<span style="font-family: Trebuchet MS;">He enjoyed some playtime in the water last Sunday on his slip and slide. He can't actually run and slide, but he can slide with Dada's assistance. Trace would sit, Daddy would give him a good push and Trace would scoot back on his bottom. Eventually Trace even braved it on his tummy! I think Dada's arm got quite the workout. So did Trace though, because he was saying "nigh nigh" at 3:30 PM. He curled up on me and was asleep by 4:00, woke up at 5:00, took meds, vomited his meds back up, and only woke a few times. He was up at 3:00 AM to eat and fell back asleep until 6:15. I was happy not to be up before the roosters!</span></div>
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<span style="font-family: Trebuchet MS;">Trace will go in on Monday AM to have another VEEG. I pray he can make it through attaching all the leads without too much of a meltdown. I pray our favorite nurse is there - he's amazing and Trace loves him. I pray I can make it through 23 hours stuck in a small room with Thomas and he not drive me completely crazy! :-) Seriously though - please pray for good results for my little Mister.</span></div>
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<span style="font-family: Trebuchet MS;">Well so much for a short update :-) Thanks for checking in on us!</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,</span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Laurie</span></b></div>
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<br /></div>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com0tag:blogger.com,1999:blog-4344360893029238313.post-5986262021946421852012-05-14T11:14:00.000-07:002012-05-14T11:14:30.659-07:00Mother Warriors<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">My two greatest gifts - Peyton and Trace. God chose me to be their mother and for that I will forever be grateful. They have brought endless joy, love and happiness to my life. They are my everything. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Peyton is an amazing daughter, sister and friend. I am so proud to be able to say that about my girl! She is giving and caring and kind and beautiful. She is a complete ball of energry and smiles. I love her "to the moon and back" and think I read that book to her at least a thousand times over her childhood. I have only a few short years left with her under my roof, but will never be done being her mother. I will make sure she continues to grow and become even better a person. I can't wait to see what great things she accomplishes when she's <em>All Grown Up</em>. </span></div>
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<span style="font-family: Trebuchet MS;">Trace is a brave, loving and resilient little boy. He is an inspiration. He has the most amazing smile. I am so proud to have been chosen as his mother. I hope to one day be able to teach him as much as he has taught me. He endures more on a daily basis than most could. He is strong, courageous and never goes down without a fight. I live everday to feel his skinny little arms wrapped around my neck - it is truly the best feeling. I pray everday I may see him <em><span style="font-family: "Trebuchet MS", sans-serif;">All Grown Up</span></em>. </span></div>
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<br /><span style="font-family: "Trebuchet MS", sans-serif;">I have chosen to be a warrior for both of my children. The battles I fight for them are very different. For Peyton I fight so that she may achieve everything she sets her mind to. I have fought hard to make sure she has had the best life possible. I fight to protect her from all the bad things & even worse people. I have fought so she may learn to fight for herself. For Trace I fight so that he may live the most normal life possible. I fight for him to enjoy everyday. I fight for a cure for Mitochondrial disease. I fight for his life. I hope to one day win. I will never give up. </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Happy Mother's Day to all my fellow Mother Warriors ~ </span></div>
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<br />Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com0tag:blogger.com,1999:blog-4344360893029238313.post-90034065182064604222012-04-26T06:59:00.001-07:002012-04-26T06:59:40.270-07:00Back 2 Square 1<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">I want to start this post off by being positive because it's not going to end that way. Trace is doing great right now. He's been at his baseline and I believe that baseline may have even gotten better than before. For those of you in the Mito world you know it's all about that baseline. For those of you not - it's where Trace's normal is. It's the place we always want our little guy to be.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Now the negative. I'm angry, so sorry if this post seems a little harsh or crazy. I received Trace's Transgenomic Nuclear Mitome Test results Tuesday. They were unremarkable. Think that sounds great right?? Well not so much to me. You see this test is something that was supposed to give us lots of answers, something I was so excited to hear was finally available. Well we got nada! It was a hope to see exactly what nuclear genes of Trace's were mutated, which could lead us to a more precise diagnosis and most importantly a better prognosis for what his future may hold. We received nothing - therefore we're Back 2 Square 1. Ugh! I cried uncontrollably most of the afternoon and evening. See I want to know these things. It's just the type of person I am. The more I know, the better I can help my baby. The more the doctors know, the better they can help my baby. If anyone is wondering, Yes, Trace still has a mitochondrial disease diagnosis. This test was not to rule that out. It was just to better help us understand more and develop a better treatment plan for him, yet we got nothing. Most people may think this is still great, because we didn't receive some horrible news from it. Well here's the thing, we already received the horrible news October 5, 2010 when we received Trace's diagnosis of Mito. We still know no more than that day. I hate that I let myself get my hopes up so high about this test. I just want to know - is that so much to ask?</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">I always refer to our lives as a roller coaster ride. I know in some ways everyone is on that ride. However, I feel ours is a little on the extreme side. One day we're on the way up, hang on for a couple more enjoying the ride, oh crap the bottom drops out and then everything comes screaming down hanging on for dear life. I'm tired of this ride - can't I just get on the carousel for a while please??</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,</span></b></div>
<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US;">Laurie</span></b>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com2tag:blogger.com,1999:blog-4344360893029238313.post-49389772129207814952012-04-18T12:39:00.000-07:002012-04-18T12:39:11.456-07:00UMDF Family Meeting - Morgan's Wonderland<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">We attended our 2nd Annual UMDF Family Meeting at Morgan's Wonderland this weekend. I love that place!! For those of you unfamiliar with <a href="http://www.morganswonderland.com/index.html">Morgan's Wonderland</a>, it is a park built for special people with special needs. Trace really showed us his physical improvements on the playground areas. He blew my mind at what he was able to accomplish - all by himself!! Just shows me that all that therapy we force upon him is well worth it. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">He enjoyed the sensory room even more that last year - I didn't think that was possible, but the Yeahs!, Wows!, clapping and excitement from Trace were at the next level. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">He loved the carousel this year. Last year he liked it until it started moving, then no so much. He rode it at least 4 times. </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">He had a great time on his Choo-Choo ride. This kiddo loves trains! </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Peyton played with Trace while we listened to the speaker, who was really informative. Wish I could have heard this presentation a year ago. Of course I was still in denial about Trace having Mito and this presentation confirmed it over and over so it might have hurt a little. I still feel that denial sometimes and it did make my heart sink a little. That only lasted a very short while though. The facts are facts and Mito is our reality. All I can do is work through it as best I can and love every moment with my little Mister. </span></div>
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<span style="font-family: Trebuchet MS;">It was really a wonderful family weekend full of smiles that make my heart so happy!</span></div>
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<span style="font-family: Trebuchet MS;">This was Trace 20 minutes after leaving the park ~ I'd say he had a great time!</span><br />
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,</span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Laurie</span></b></div>
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<br /></div>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com1tag:blogger.com,1999:blog-4344360893029238313.post-88204493783142870512012-04-10T07:58:00.000-07:002012-04-10T07:58:40.698-07:00Easter 2012<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">We had a wonderful Easter weekend celebrating with our family. The weather was beautiful and thus we spent copious amounts of time outdoors. Trace enjoyed hunting eggs this year. It was his first time ever to hunt eggs by himself. Last year he just couldn't, crawled to a couple of eggs and then just sat in the grass dazed. It made my heart so happy to see him enjoy the egg hunt and of course the candy!! </span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Friday Peyton, Bebe & I went shopping. We had a great time together. I love when Peyton & I can have girl time together!! Thomas and Mister went out to visit his family and enjoy a crawfish boil & fish fry. They spent the day riding the "Choo-Choo", swimming and swinging. Trace came home extremely tired, but I guess all that fun is hard work! </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">My two handsome guys</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Check out my muscles!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Look who's swinging on the big swing!!</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Saturday was spent with my family. An egg hunt, lots of time in the bounce house, relaxing on the porch and great food. Trace and his cousin had a great time boucing & egg hunting. So much of a good time that Trace was so worn out he wanted to sleep by 6:00. It was a wonderful day - wonderful memories made.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">Sunday we went out to my grandparents farm to spend the afternoon with my extended family. It was a georgous day again. We haven't been to this family gathering in a few years - mainly because of Trace's health. It was really nice to see everyone again. </span></div>
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<span style="font-family: Trebuchet MS;">We ended Easter with a small egg hunt of our own. Trace was a little worn out after all the weekends fun, so we all sat in the backyard and enjoyed some great photo ops.</span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,</span></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Laurie</span></b></div>
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</div>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com0tag:blogger.com,1999:blog-4344360893029238313.post-9730364508773839752012-04-04T11:35:00.000-07:002012-04-04T11:35:19.661-07:00Onfi<div style="text-align: justify;">
<span style="font-family: "Trebuchet MS", sans-serif;">I'm happy to report we are seeing some good things from Onfi!! Onfi is a medication which was just released by the FDA October 2011 to treat seizures. When we last visited our neurologist/epileptogist in March I had expressed my worry about Trace's neurological prognosis. After a long discussion, Dr. V decided to put Trace on Onfi and titer off of Klonopin and then Topamax. End result being Trace on Keppra & Onfi to treat seizures and to see better neurological progress.</span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">The good results - We have seen an improvement in Trace's speech development and even some improvement in his physical abilities. Trace is really babbling - something he's never done before. Trace said his first two word combination a few weeks ago! It was <em>Oh No</em>. I was so proud to finally see him achieve such a huge milestone! He also said his second two word combination a week ago. It was <em>Oh Sh*t</em>. I know I shouldn't be so proud of this one - but I am! It may not be the best choice of words - but it is two different words together. It's my fault, yes he repeated me. Trace thought it was the most hilarious thing ever and cracked up after saying it each time. This was again my fault. Probably because I made such a big deal out of it first gasping and telling him no; but then laughing because you just can't help but laugh when Trace does, his giggles are contagious. Another good result has been a decline in myoclonic seizures! We had one really bad night with them where he was up from 1:00 - 2:00 AM seizing. Not so bad in the big picture though. Once again the fog has lifted and I see the glimmer in my little boy's eyes shining so bright! </span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">The not so good results - I have noticed an increase in absence seizures :-( It has also affected his sleep. His behavior isn't exactly wonderful, but I don't really care. I can deal with that. The positive effects of the medication outweigh aggressive behavior any day.</span></div>
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<span style="font-family: Trebuchet MS;">So after discussing all of the above (plus a little more) with Dr. V here is the new plan: up the dosage of Onfi (double, 3x/day), keep him on Topamax and double his dosage of Melatonin. Of course I would have loved to hear leave Trace on his current dose of Onfi and titer off of Topamax - but we can't have everything :-) I'm just happy to hear his beautiful voice more and more. </span><br />
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<span style="font-family: Trebuchet MS;">I'll leave you to enjoy one of my most recent & best memories . . .</span></div>
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<span style="font-family: Trebuchet MS;">. . .Trace & Hudson. Fearless, Crazy, Little Boys!</span></div>
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<span style="font-family: Trebuchet MS;"><b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Hope, Love, Courage &Faith,</span></b></span> </div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: #00b050; font-family: "Lucida Handwriting"; font-size: 16pt; line-height: 115%;">Laurie</span></b></div>
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</div>Lauriehttp://www.blogger.com/profile/06517627410498688956noreply@blogger.com0