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Old 07-23-2010, 09:00 PM   #1
Mom2mitokids
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Korissa's Magical MAW/GKTW PTR....4 HUGE Big Give (2-18-11)..page 40

Hi everyone,
Newbie here. Starting Korissa PTR. We don't have date yet(looking at Nov 14th-20th or March 20th-26th). We just got together with her Wish Granter last night. They happened to be my youngest daughter Granters too as she had a wish(I wish I knew about this board). I started this PTR last night, but unfortunately we ended up taking Korissa to the ER. She was have chest pains that was affecting her left arm. All test came back ok. Her blood pressure was low and she was having high HR, but they released her at 3am. She went to the doctors today and he thinks it's her GERD acting up.

Anyways...My name is Kris and I have 5 kiddos. I have been married for 20 years to a wonderful guy named Scott. Kids are...Kerri-18, Korissa-16, Kyra 14, Steven-10, and Kylee-7. Kylee and Korissa both have a disease called Mitochondrial Disease. Since we have the maternally inherited form all the kids and myself have it, but it's Korissa and Kylee that have it the worse and unfortunately..Kylee got the worse out of all of us. Scott has been out of work for over a year, so life has been difficult. We really can't wait to just get away from all this stress.


What is Mitochondrial Disease
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infe


As of right now..theirs is no cure...

Korissa was born on Oct.27, 1993. She was born at 39weeks, but was really small. She weighed 6lbs 1 oz. She was always a sleepy baby and had a weak suck. Ped couldn't find anything wrong with her. At her 6 month checkup I brought her in because she had an upper respiratory infection and an ear infection. This is the time the Ped found a heart murmur. We were referred to a Cardiologist. This is were we found out she had an Atrial Septial defeat. He told us with this type of defeat..Korissa wouldn't see any side effect. This wasn't true. She was always had blue tinge lips and slept a lot. She would wake up at 8am...take a 4 hour nap, and then be ready for bed at 7pm. She was hospitalized many time due too upper respiratory infection/pneumonias. She also has had many medical procedures and surgeries through her years. Her biggest surgery was when she was 2. She finally had her open heart surgery to close her hole in her heart. The Cardio thought the hole was a size of a dime, but it turned out to be a size of a Quarter. Korissa had some complication and had to go back to the OR and redo the patch...which met going back on the heart lung bypass. She spent 2 weeks in the hospital. From age 2 too now she has had a lot of issues she has been dealing with GERD,Ptosis, developmental delays, Fatigue issues, heat/cold intolerence and is sick at least once a month with high fevers and colds. My next post I will tell you how we came about Mito. Here's a picture of our family.



Starlight Foundation Gala
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Kris.. Mommy to 5 kiddos...
Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee

Last edited by Mom2mitokids; 03-30-2011 at 12:08 PM. Reason: forgot to add something
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Old 07-23-2010, 10:35 PM   #2
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page 2

How we came to Mito.
Kylee was born 6-18-03. From the moment she was born we knew she had problems. They had to take her straight to the nursery due to junky lungs. They tested her blood sugars and found it to be 21. They immediately gave her a bottle of formula to bring it up. Four hours later I finally got to see her. I tried breast feed her, but she was still throwing up formula she had 4 hours prior. The nurses took her back to the nursery to keep an eye out on her. They gave her some soy formula but she threw that up too. I had my tubes tied the next day and while I was in surgery Scott noticed that she would do these little jerky movements, but he just thought she was cold. We were discharged 48 hours after delivery. She developed jandice and so she was under photo therapy for 5 days. We kept seeing these jerky movements, but thought they were just baby movements. When she was 3 weeks old she had this long movement and I really couldn't wake her. I called the Ped who immediately admitted her. They ran a lot of test(mostly for her reflux). it was confirmed she had severe reflux. The next day we were released from hospital so we can go see a Neuro(we don't have a Ped Neuro in town. They did an EEG and it was confirmed she was having seizures. She was put on Phenobarbital(sp). After about 20 seizures..she had stopped having them at 2 months.

Also at birth I noticed she had a droopy eyelid. For her first 23 months was nothing but hospitals and medical procedures. She wasn't gaining weight, still had her reflux, and many more issues going on. At age 23 months she had a G- tube put in and a Toupet FUNDO done. In total she has had 12 surgeries and countless medical procedures. Her last surgery was last April and she had a Roux-En-y. This is a separate J tube.

No one could figure out what was wrong with her. She was seeing Neuro,GI, ENT, eye specialist, urology, Ped. It came to my attention to look into Mitochondrial Disease. I asked her GI about this and she was on the same page. First we did a MtDNA and that came back normal. The next step was to do a muscle biopsy. This is were we were told she had defects in complexes III and IV. She was 5 years old. It took 8 long months but we finally were able to see a Geneticist(Mito specialist). It was here we discovered that she has a maternally inherent form of Mito. I have had issues all my life. I was always fatigued and sickly. I also had developmental delays. In Jan.09 I started having heart issues and in July 09 I had a pacemaker put in. Than this year I'm starting to have lung issues and is on 02 at night. Here's a run down on all of us...

Korissa....GERD
Heart issues-Atrial Septial defeat-Brady
Asthma
Double Ptosis
fatigues easily
Can't tolerate the heat
chronic high fevers and
Developmental delays
Muscle weakness
dysautonomia(sp)
Neurological...abnormal EEG
hypotonia
restless leg syndrome
Surgeries... 3 ear tubes, ASD repair,and 4 Endoscopies

Kylee... Severe motility issues
Pseudo- Obstruction
FTT (she weighs 37 lbs now)
Severe constipation issues
Fatigue issues..muscle weakness
Can't tolerate heat/cold-she has to wear a cooling vest at anything above 80 degrees
Ptosis (surgery to fix in 07, but still droops when fatigue)
dysautonomia(sp)
Neurological issues...abnormal EEG and MRI
Microcepley(small head)
main nutrition is through her J tube(Roux-en_Y)
Hypotonia
Surgeries... Toupet FUNDO, G Tube placement, 2 Ear tubes, Ptosis (eye) surgery, Pylorplasty, Muscle Biopsy, 5 Endoscopies, and Roux En Y (separate J tube)..and countless other medical procedures.

Kerri- Thankfully only a couple minor things
scoliosis
abnormal ribs
Asthma

Kyra- again...thankfully minor
muscle pains
migraines

Steven..... ADD or ADHD
developmental delays

Me.... Chronic fatigue
Tachy- Brady syndrome (pacemaker- meds for tachy)
02 drops to 85, so on 02 at night
Muscle weakness
Can't tolerate cold
reflux
Severe restless leg syndrome
low blood pressues(70s over 40s) on meds for that

I guess that's our crazy story......

Glad I found this board. Can't wait to meet new friends. I just wish I found this sooner with Kylee MAW. I did read a bunch of wish stories.
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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee

Last edited by Mom2mitokids; 12-16-2010 at 04:08 PM.
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Old 07-23-2010, 11:27 PM   #3
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Oh...I wanted to say that we weren't going to do a wish for Korissa since we were blessed with one. It was the granter that kept after us to do one. It took a year for us to finally do one and unfortunately the Ped that said she would do one denied her. She really didn't know much about Mito. At the MAW holiday party it was brought up again and I told them that she was denied. Oh...I have to say..we know just about everyone at the L.A. Chapter. We do a lot of Fundraising for them. My kids were even on E! News for MAW. ok..back to story. The granter went to get someone higher up and we talked. She couldn't do much about being denied, but gave us some hints. We again weren't going to procede with it, but after another fundraiser and talking with them we went to her GI doctor who went and did her referral and this time was approved. She knows a lot about mito as she works at the same hospital as our Mito doctor. What was hard was everything was discussed in front of her and she couldn't understand why she couldn't get one as she too has Mito.
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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

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Old 07-23-2010, 11:27 PM   #4
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Hi Kris! Nice to read all about everything! I'm still learning so much about your family!! I can't believe you guys deal with all that though! Can't wait to hear more about your plans and trip! I subscribed to your report!
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Pre-trip report http://www.disboards.com/showthread.php?t=2486678
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Old 07-23-2010, 11:39 PM   #5
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Quote:
Originally Posted by kctwinmommy View Post
Hi Kris! Nice to read all about everything! I'm still learning so much about your family!! I can't believe you guys deal with all that though! Can't wait to hear more about your plans and trip! I subscribed to your report!
Korissa doesn't like me talking about her too much. Mito is a horrible Disease. It can affect every organ. I'm new to this...how do you subcribe to someones report?
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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

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Old 07-24-2010, 03:06 PM   #6
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Posting some pictures of the kiddos...

Korissa


Korissa recent hospital visit...


Kerri...



Kyra...



Steven...



Kylee...



Her 2 week hospitalization in April

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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

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Old 07-24-2010, 03:14 PM   #7
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Ugh...Met to say GKTW in my title. Just noticed I did it wrong.
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Kris.. Mommy to 5 kiddos...
Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
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Old 07-25-2010, 08:52 PM   #8
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Welcome Kris....we just got back from GKTW/Disney week before last. Had the time of our lives.....in the process of starting a trip report very soon!!!
You sure are an amazing mommy to some beautiful kiddos!!!!!!!!
This place helped me more than I can explain. I look forward to keeping up with your ptr!!!
Jeannie
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http://www.disboards.com/showthread.php?p=36771548
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Old 07-25-2010, 10:17 PM   #9
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Quote:
Originally Posted by Laurensmom2004 View Post
Welcome Kris....we just got back from GKTW/Disney week before last. Had the time of our lives.....in the process of starting a trip report very soon!!!
You sure are an amazing mommy to some beautiful kiddos!!!!!!!!
This place helped me more than I can explain. I look forward to keeping up with your ptr!!!
Jeannie
Thank you!!!
I read all of Laurens PTR the other night. Can't wait to read the post trip. Even though we went on a trip before...I still have tons of questions. We now have more medical equipment we are taking. So many things we didn't get to do.
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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

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Old 07-25-2010, 10:24 PM   #10
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Upper GI and Small Bowel Follow Through

Tomorrow Kylee will be having an Upper GI and a Small bowel follow through. I'm so dreading this test. I know she won't drink the barium and not sure they can put it in the G tube. The last time she had barium she ended up in the ER 2 weeks later with cement BM. Needless to say...she will be hooked up to Pedialyte all day tomorrow after the test instead of her formula.

Korissa will be having this test done next. Not sure on days yet.
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Kris.. Mommy to 5 kiddos...
Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
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Old 07-26-2010, 10:24 AM   #11
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I found you!

Did you get your question answered about how to edit your title? If not - you just go to the first post and click "Edit" and then "Go Advanced" and you can edit your title from there. A lot of us keep the first part of our title consistent and then just go back and add things that tell folks when it is updated or has new info or pictures. But that is totally up to you.

You have some beautiful children!! I am so glad she is getting her wish!

I will bookmark ya on the Wish Trippers page so others can find ya!
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Old 07-26-2010, 10:36 AM   #12
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Hi Kris! You have an adorable family! I hope the testing the girls are going through is not too hard on them. Can't wait to hear about your planning.
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Old 07-26-2010, 07:59 PM   #13
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Quote:
Originally Posted by maroo View Post
I found you!

Did you get your question answered about how to edit your title? If not - you just go to the first post and click "Edit" and then "Go Advanced" and you can edit your title from there. A lot of us keep the first part of our title consistent and then just go back and add things that tell folks when it is updated or has new info or pictures. But that is totally up to you.

You have some beautiful children!! I am so glad she is getting her wish!

I will bookmark ya on the Wish Trippers page so others can find ya!
Thank you Maroo,
I just fixed it. Thank you. I read Laurens post trip last night. What a great trip report. I'm sorry their were some mishaps in the trip. I know Kylee had some off days on hers. Hoping this time it goes smoothly. How do you bookmark?
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Kris.. Mommy to 5 kiddos...
Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
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Old 07-26-2010, 08:01 PM   #14
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Quote:
Originally Posted by casper_jj11 View Post
Hi Kris! You have an adorable family! I hope the testing the girls are going through is not too hard on them. Can't wait to hear about your planning.
Thank you. Kylee did well. Thankfull they put the barium in her G Tube.Now lets hope she can pass it.
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Kris.. Mommy to 5 kiddos...
Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
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Old 07-26-2010, 08:30 PM   #15
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Best time to go

When is the best time to go to WDW? We did two dates... Nov. 14th-20th and March 20th-26th. I really not sure we will get the first dates as GKTW maybe to full already. I'm really shooting for March. I really think Nov. is too soon. Is March a good month to go? With Kylee wish trip we went in Nov. and it was freezing. It was on the news everynight. Highs was low 60s and lows was in the high 30s. I know this was not the norm. How is the weather in March? My kids can't be in hot weathers.
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Kerri-19,Korissa(wish Child) 17, Kyra 15, Steven 11, Kylee 8 (post wish child),
PTR..http://www.disboards.com/showthread....1#post37518385

TR..http://www.disboards.com/showthread.php?p=40564833

http://www.facebook.com/HopeforKylee
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