Mika's Journey

HER DISEASE DETERMINES HER DAY TO DAY LIFE...HER STRENGTH, HER WILL TO LIVE DETERMINES HOW SHE LIVES IT!
Welcome to Mikaila's page. Mikaila was born September 27,1996 on her mommy's 23 birthday. She is a 9 year old little girl that is full of life and love for her family, friends and her animals. Even though she has many health issues she continues to take life head on. She bounces back blow after blow and amazes us all. After many years of tests, and hospital stays she was finally diagnosed on February 9,2005 with Mitochondrial Encephalomyopathy. She has a significant complex I and a minor II and III. She suffers from daily seizures, cyclic vomiting, low muscle tone, sensory integration dysfunction, hypoglycemia, muscle pain, fatigue, failure to thrive, poor growth, poor weight gain, renal tubule dysfunction, wears AFO's, uses a power assist wheelchair, hyperthyroidism, and has a Chiari type I Malformation in her brain. She also has a G-tube for meds and feedings.

What is Mitochondrial disease? Quote from UMDF"
"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. 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." ~End quote~


One of my goals with this web page is to educate and bring awareness to people that just because she may look normal like most children do. Children with Mito disease are very sick and have to take one day at a time. Thank you for taking the time to visit us. I hope you enjoy the page. Take care and God Bless you!
Mandy Salensky

*A CHILD IS LIKE A BUTTERFLY*

A Child is like a butterfly in the wind
Some can fly higher than others,
But each one flies the best it can.
Why compare one against the other?
Each one is different.
Each one is special.
Each one is beautiful.

*Author Unknown*







*HUGS* TOTAL!
give Mikaila more *HUGS*

Get hugs of your own

Journal

Wednesday, January 24, 2007 1:06 PM CST

Greetings from Club Med. I am sorry it has taken me so long to update. We are here and all wired up. Jason took some pictures and as soon as he brings me the cord I will upload them. It is amazing how different this hospital is compared to Scottish Rite. There are some things I like better and some things I don’t. We almost did not have the testing done. On Monday we were informed that no one under 14 including Jaden can come up to Mika’s room. Most of you know just how close the girls are. Separating them for a week is not an easy thing on either one of them Mikaila has let everyone know how mad she is about it by calling everyone meanies. As far as the medical care, I don’t have any complaints. The nurses are all nice and the Neurologists that are taking care of Mika are doing a wonderful job. Monday and most of Tuesday Mika was on full meds. Tuesday and all day today her seizure meds and two others were discontinued. They also had to place a port just in case they need to administer rescue medicine. Mika is not an easy stick to this was not that easy. She has so much scar tissue from being accessed so much in the past her veins tend to blow. Mikaila so far shows a generalized spike and wave pattern but she hasn’t had the “big ones” that we need her to have so the neuro can see what is going on. We are hopeful that this will be a success but we know in the back of our minds that Mika is not in a seizure cycle at the moment. If we would have gotten in here in December they would have gotten more than enough information. Tuesday Mika also had 4 vomiting episodes. Today Child Life brought us many fun things to do. Mostly crafts and paint. Mikaila’s favorite things to do so she is happy.

I was talking (ok venting) to Lindsey yesterday on messenger about missing Jaden and how mad I was that she can not come up here even for a few minutes and how worried I was that she was at home etc. I know she is very capable of taking care of herself but she is still a kid and I tend to hold on to her a little tighter because of our past. About 20 minutes later my phone rings. It is Lindsey calling to tell me that she knew how much we needed her and she was on her way. She had made arrangements for Wyatt and her and Annabelle were already in the car. She drove all the way here from Georgia to come be with Jaden and to help out. I am so blessed to have special people like this in my life. She is truly a God Send. I will never be able to thank her enough. We love our pajama girl!

Please say an extra prayer for Jaden our schools were closed today for a snow day. She was supposed to sing her solo tonight but it has been cancelled too. She is so disappointed. She also had something very important happen to her and I should be there for her at this time but I can’t. It is probably tearing me up more than it is her because she has Lindsey and Annabelle.

I want to say a special thank you to Kathy for going to rescue Jaden at school yesterday. Thank you for being there for her and me when we needed you!

There are two numbers here to the hospital room. We are in room 736. The direct line is 513-636-1736. They have a toll free number it is 1-800-344-2462. I also have my laptop hooked up in the room so if you use msn messenger or yahoo messenger you can get me that way too. My username on both is mija2gs@yahoo.com

I will close for now. Thanks for checking in on us and be sure to sign the guest book so we know you were here.

Live, Love, Laugh and Pray,
Mandy

Hospital Information:

Patient Room: we are home right now

Childrens Health Care of Atlanta Scottish Rite
1001 Johnson Ferry Road NE
Atlanta, Ga 30342-1600
404-256-5252

Links:

E-mail Author: mija2gs@yahoo.com

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 6361 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.