Sunday, March 28, 2010

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......

Tuesday, March 23, 2010

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..

Monday, March 15, 2010

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 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.

Wednesday, March 10, 2010

Where's the beef...

The kids both went to the allergist yesterday to be retested for thier food allergies. We had our hopes set high for Owen to be able to have beef now because that would be the next thing for him to outgrow. It was lovely being in a room as small as a closet with two screaming kids with hives on thier backs for the test. I swear I was in hell for just a minute, anyway it's over now. The doctor came in looked at Scarlett's back and said hers looks great no allergies but he wants to blood test just to double check peanut. Owen turned around so the doctor could see his back and I knew we were in trouble. He took one look and said all his food allergies are still severe and beef was one of the worst.....ok our bad day now got worse.The doctor left for a minute, Owen had big tears in his eyes and said I am still allergic to beef? I guess this broke my heart for alot of reasons...
1. he can't catch a break
2. we hyped it up because we really thought he was gonna be able to eat it
3. he has a horrible progressive disease and he does not even know it
The disease part because this broke his heart and he kept on saying Scarlett is not allergic to anything , how comwe I am. I thought of this conversation in relation to mitochondrial disease down the road. I actually cryed in the allergist office yesterday while holding him. I thought this isn't fair, maybe he was crying for the beef and I was for the injustice. We have decided we can at least make this change for Owen at home. With spring approaching if you come to our house for a bbq you too will be asking where's the beef?

Tuesday, March 9, 2010

Just what the doctor ordered...

What a welcome sight the sun has been the last couple of days,we are so ready for spring ! It just seems everything is better when the sun is shining and we could all use that. Life has been good the past week at the Gervasone household everyone is holding thier own. I went to register Owen for kindergarten yesterday, very exciting and nerve racking. I sat in the principal's office, funny it actually made me feel like I was in trouble.We have to set up a 504 plan for Owen which will list everything he will need for school(snacks,extra hydration,rest periods,physical and occupational therapy). I am very nervous to have somebody else take care of him when he is at school. What if they don't realize when he has had enough and push him too hard...I just figured I go to school with him everyday...not. I know he is growing up and I have to let him be like the other kids. This is all part of the growing up process with or without a disease and I have to step back sometimes and let go a little bit. I guess it's easier said then done but for now I will loosen my grip a little bit but I will never let go.