from graduation to hospitalization.....

Owen graduated from preschool this week yeah.......next day we landed inpatient for dehydration..... All my mito mom friends can tell you as well summer is the enemy for most of our kids. Owen is having a hard time regulating his body temp and can't cool down easily. He will go outside for 10 minutes and sweat for a good hour after causing him to lose alot of fluid. We are looking into getting him a cooling vest so he can play outside a little bit. I am trying to pick a school for Owen for next year and this has become a real challenge. I would love a private lutheran school but alot of them do not have enough resources for kids that need extra help. The public schools offer that but the class sizes are so big and Owen would get lost in the crowd. I am glad I have the mother I have at times like these, we can both be hmmm a little vocal at times. I can fight the fight to do what is right for my children and people usually listen. It seems MY daughter has that quality too.....god help me!

Happy Mother's day

I am finally realizing why we learn certain lessons in life and why we have the parent's we do. As I was growing up my mom represented strength and wisdom to me, with that no nonsense kind of love. I remember going to her work and feeling so proud of all she did there. My mom lead a group of nurses like no other, she offered mentoring support to everyone and changed lives. I remember sitting on her bed watching her get ready to go out with my dad and thinking wow is she beautiful. As I grew up and became a teenager my mom gave me my own identity but made sure I knew SHE was the boss. I now know during these times my mom struggled with depression, taking care of her sick mother and working full time. I would have never known because she made all look so easy. In my child eye's I thought everything was great and never realized how much she went through. My mom didn't bake cookies, wear an apron or attend to my every needs. She gave me something else I would need later and life, strength and perserverance. I did not know I would have a child who would be sick. I know she gave me the tools I needed to be able to take care of him and not feel sorry for myself. It's funny I look in the mirror and she looks back at me now. I am slowly evolving into her and that makes me proud. Happy mother's day mom, I love you!

My heart is full of love!

I know it's been awhile but I have been working through some things. Today I want to talk about my amazing group of family and friends who came out and walked for the MDA in honor of Owen. I am so proud to be part of this circle of people, they are awe inspiring! I finally feel like I am making a difference in this world and working towards a brighter future for Owen. I fell into the MDA and am now welcomed into a whole new family fighting to help cure neuromuscular diseases. My beautiful boy had a grin from ear to ear today as Owen's team Super Mario walked to raise money for his cause. This illness has brought me friends I did not even know I had and closed in my circle of the ones I did have. Today made up for the previous one, and the one before that,etccc....My last few weeks have been a struggle but not today,not today! My heart is full of love and I am too...

Mito taking a toll..

it has been awhile since I wrote and I need to express alot on here today, I am angry. I am angry at this ugly disease that is trying to damage my son. My beautiful 5 year old boy who does not know the fight he is up against. We have recieved our results from Cleveland Owen has Encephalopathy in his occipital lobe of his brain. What the hell does that mean....his brain is being affected now too. We also went to the Dr last week and Owen is not gaining weight and he has developed an "extra heartbeat", so we go back to the cardiologist as well. In the words of Owen's doctor this disease is now affecting all of him. WTF...seriously mitochondrial disease...seriously lets go you and me. I will take you down one day, you will not harm my son or any other beautiful child ever again. How dare you make kids sick,tired,weak,have seizures,fail organs,not grow,dehydrate etc..., how dare you. I promise you this I will fight with every ounce of me to beat you once and for all, until then go pick on someone your own size..

Back home..

We are home from Cleaveland Clinic and we are all still alive. Yes, after Owen, Mike and I being stuck in a 2 by 2 hospital room together for 2 days. Owen did have an "episode" while we were their by we can't confirm it was a seizure. He was being videotaped and Mike had just scooted him up to eat when it happened. The brain waves showed slowing but they could not see his face........ughhhhhhhhhh talk about frustrating. Anyways, we will hopefully find some answers when they comb through the EEG tommorow. I am slowly but surely learning life IS really what you make of it. No, it is not fair and yes curveballs are a part of our daily lives. When I am walking through the children's hospital halls I feel a mixture of emotions,. I know our situation could be worse and believe me it could be alot worse. I also feel fear that one day it will be worse and that scares the hell out of me. I looked into the innocent eyes of my son this weekend and know he's ok with where he is right now, so I should be too......

Cleaveland Clinic here we come...

Ok, so the past week has been hell trying to get all the insurance stuff straight. I finally got everything figured out and we are going to Cleaveland Clinic Thursday- Saturday. Owen is having a 48 hour EEG to see if we can catch seizure activity. Seizures are very common with mitochondrial disease and Owen was always thought to have them, we just never caught them. I am praying for an "episode" while we are there so we can indeed figure out what is going on. I feel bad because once again Scarlett gets left behind but she is way too little to bring. We did get approved to get the rest of the genetic testing done for Owen as well!!!! I pray we find the mutation that he has so we can test Scarlett and other family members.I have been searching for balance lately between doctors,therapy,work etc..., but I have to realize it will all work out. One day at a time and with patience and perserverance all things are possible. The perserverance is right up my alley, now the patience part I need to work on a little..

Thoughts for the day

Ok here are the things I need to accomplish this week for Owen.....
1. set up a 504 or IEP plan for school next year
2. Physical therapy 2x
3. talk with Children's Special Health to see if they approved us for Cleaveland and the rest of our genetic testing
4. Physical med doctor on Weds am
5.love him, hug him and remind him how special he is
Scarlett needs her mom to be mentally here, not everywhere when I am around. My beautiful strong little girl needs her mom to relax and remember to live in the moment more. My husband needs his wife to come down from the edge of the constant annoyance and have more patience. I also need to tell him I love him more and know that I appreciate what a great husband and father he is. I need a nap....dear lord get me through this week.