Re: Ann Story part #4

[Guest guest]

WOW!! I will have to read this before bedtime!! You have been a busy

bee!!

Shirl

> oldest sister that she was the lucky one, her children didn't live

> long enough for her to experience the day in and day out hell I felt

> at the time, I was living in.  I was very overwhelmed at the amount

> people seemed to think I could and should handle from doctors, family

> and friends.  I have been told that many times people knew I needed

> help, but they just didn't know how to help me.  That our situation

> was very overwhelming and intimidating to outside people.  I can say I

> truly found out what the meaning of a true friend is during this

> time.  I had many people who I thought to be friends walk away from us

> because our life style was too stressful and they couldn't handle the

> daily stress we lived.  This was extremely hurtful, but there was

> nothing I could do about it. My true friends stayed around through

> thick and thin and I had to be grateful for that.

>     

>       My stress level was growing, as my son had begun to have huge

> outbursts of fits of rage.  He would explode for no apparent reason,

> often times, totally unprovoked and he could clear out his room in a

> rage. He was so strong during these outbursts that it was getting to

> where I could not hold on to him.  I was afraid he was going to hurt

> one of the girls or myself.  Several times I had to call my husband

> home from work to help me with him, which put my husbands job in

> jeopardy. We were told from the behaviorist doctor that we were sent

> to, that we just needed to be better parents and set more boundaries

> for him and he would be fine. We were the problem not the child

> himself. This did not set well with us, and even though we knew this

> person to be totally wrong, like good parents we followed this persons

> suggestions. It made absolutely no positive change in him, in fact, it

> only made his outbursts more frequent and dangerous to his sisters and

> myself as he is a big boy. My heart ached for him because after a

> " fit " he would come and curl up in my lap and cry telling me he didn't

> want to be a bad boy.  I would just hold him and tell him I knew he

> was not a bad boy and that we would find a doctor to help us soon. So

> we abandoned that doctor and went back to the Mito doc who then put

> him on several different meds and landed finally on Amitriptaline, and

> Celexa.  Our wonder drugs!  Our household had finally started to

> settle down some, his fits of rage all but stopped with a very few

> break throughs . 

>         By this point my nerves and patients for certain doctors was

> wearing very thin, and I was having a very difficult time with

> remaining calm with any doctor who did not want to listen to what I

> was saying about the children's symptoms.  I knew that the genetics

> doctor we had was on our side, but he too was wearing thin with all

> the problems we were having with the outside specialty doctors we were

> having to deal with.  He as well as his staff continued to encourage

> me and help me with my anger issues each and every time the children,

> mostly my oldest daughter had to be hospitalized.  I dreaded

> hospitalizations and I am convinced so did he.  It never failed

> something major would go wrong due to a staff error with our kids. I

> began to see a counselor at this time to help me deal with all the

> stress, frustration, grief and flat exhaustion I was experiencing.  My

> counselor at the time could not believe all that we had survived

> through.  I was dealing with so much at the time I couldn't believe I

> was still standing.

>      I remember one night that I had my oldest vomiting everywhere,

> she was in a cyclic vomiting cycle, and I mean there was vomit

> everywhere, on me included, my son decided to have a melt down and

> started raging over the vomit everywhere, and my youngest was crying

> and wanting to be held because she was having a bad migraine.  My

> husband was at work. He works nights and I work days so a parent is

> always available for the kids. I was already tired from teaching a

> special education class all day.  I sat myself down in the middle of

> the living room floor and just cried.  I wasn't sure I could go on

> anymore!  I had called home for someone to come and help me, and no

> one could come at the time.  I felt so alone!  I managed to pull

> myself together, called a friend who came over to help me clean up the

> vomit everywhere in my house, and got everything back under control

> again for that night anyway.  I decided I just needed to put one foot

> in front of the other one step at a time and deal with all that was

> going on.  These were my kids and my responsibility.  Our family

> crisis was just that, ours and I couldn't depend on others to bail me

> out.  I pretty much live by the one foot in front of the other rule

> now.  If things seem to be too much, I just need to start moving

> through it. That doesn't mean I haven't had other moments of crisis

> though at all.  But, I have learned to walk through them better. My

> Christian faith carried me through many times I have no idea how I

> made it.

>     

>         Our daughter had been quite ill for a while and it was

> suggested that we contact Make A Wish Foundation as her prognosis at

> that time was unsure.  She had the most wonderful wish granter and she

> choose to go to Walt Disney World.  Make a Wish sent us to a fantastic

> place called Give Kids The World.  The place was absolutely

> incredible!  We spent 10 days there.  The kids were all treated like

> little princess's and my son was convinced he was a king!  While

> there, our daughter had a reaction to the heat and humidity, and ended

> up at the hospital.  Upon her return to Give Kids The World,

> Poppins was waiting to ride the Merry Go Round with her! Someone had

> let them know that was her favorite Disney Character at the time, and

> she was there for her! I will never forget poor " Poppins " she

> rode the carousal with her for over an hour, just round and round and

> round. Bless that poor girl! Our daughter was in heaven!  It gave me a

> chance to get myself together after being scared from being so far

> away from home and her doctors, with yet another new symptom.  It was

> an absolutely wonderful thing that Make A Wish did for our family. 

> With all the medical bills, a trip like that is just not in our

> vocabulary then or now.  Shortly after that was awarded a trip

> by the local Sheriffs department to go to Sea World on a train. He

> loves trains! While there he fed the sharks, got to actually pet the

> Killer Whales,( Mom was terrified the entire time and knew he was

> going to be some killer whales lunch with one big ol bite, but he

> absolutely loved it!) had dinner with Shamu and a whole lot of other

> surprises.  We were so grateful for the break in our crazy world!

> Although these trips had a huge amount of stress connected to them, it

> was a different kind of stress and a much needed rest from the crazy

> day to day issues we had been living with for so long.

>      I invited my sister who I believed was having Mitochondrial

> problems as well as her children, to the next Mitochondrial Symposium

> in Cleveland. I did this for two reasons, I knew she was having a

> problem and the second more selfish reason was to try and get another

> family member educated in the Mito so I had a backup with the rest of

> the family. There we both were seen by one of the top Mitochondrial

> Doctors who is located at the Cleveland Clinic. We went through

> testing, including skin biopsies, where we both were diagnosed with

> Mito, which further backed up the California Mito Doctor's idea that

> we were dealing with a Maternally linked issue in our family. The

> Cleveland Mito Doctor decided that it was best to do a muscle biopsy

> on our oldest daughter as she was the one presenting with the most

> symptoms in the family, which had been an area of debate with other

> Mito/Genetic Drs she had been seeing.  Was it worth the risk? We

> decided that we had to get an answer as to what was happening to the

> kids, and if this was the only way we would get it, then we had no

> choice.  I returned home and waited for the call for when her biopsy

> could be done. When we got the call, we flew her out to Cleveland for

> the muscle biopsy, she also had a nerve biopsy done as well for the

> California Mito/Genetics doctor who was doing a research project at

> the time, as well as her G-Tube placed.  The kids had been

> participating in a research program where he was actively researching

> the point mutations and looking for Length Heteroplasmy 

>      At the very same time on the West coast back at home, Our son

> was having a long awaited surgery on his tonsils and adenoids and soft

> pallet repair. He was having obstructive apnea issues due to enlarged

> tonsils and adenoids.  They were both called the same week for surgery

> on opposite sides of the country. Of course that seemed to be our

> luck. If we canceled either one, it would be a very long wait until

> they could be rescheduled.  So we had 2 children under anesthesia on

> opposite sides of the country on the same day. It was extremely

> stressful, especially with knowing the risks of anesthesia and all.  I

> had a very hard time knowing that my little boy was having surgery

> without his mommy being by his side.  His dad was with him, but that

> wasn't mommy.  I sat in Cleveland and cried and cried.  Due to the

> time difference our daughter had gone into surgery first and was in

> surgery still when I knew my son would be going in.  The kids did

> fairly well, but we the parents were totally trashed.  I never want to

> do that again!  One surgery at a time thank you and preferably on the

> same coast line!

>         Our youngest was having trouble with what we were told at the

> time was selective mutism.  She would absolutely not talk to anyone at

> times.  Sometimes including her daddy and I.   Her preschool teachers

> were very concerned as she went through the entire day without saying

> one word. We had her tested for hearing and her vocal cords checked,

> all came out to be O.K. We were told that she was traumatized by all

> the uproar of our house and being left with people who were to her

> strangers all the time at the drop of a hat due to her brother and

> sister needing to be in the hospital.  She was always left with good

> friends of ours, but they were different people often.  I was really

> having a guilt trip on this one.  What she was experiencing at the

> time I thought to be my fault.  That I had not been a good enough Mom

> to her, and had not protected her from crawling inside herself to try

> and survive.  I worked and worked with her to try and bring her to a

> comfort level with new things and new people.  To this day although

> she finally did start to talk in public in the first grade although

> not much, she still struggles in new situations and is very shy until

> she has a chance to warm up.

>        Our oldest daughter now 9 years old, was beginning to have

> trouble with energy demand, lethargic all the time, constantly blue

> around her mouth, and constantly very pale.  While in Cleveland for

> the biopsies, although we had been told by the local cardiologist that

> her holes in her heart were not causing her any trouble and to repair

> them would be more dangerous than what she was going through, we were

> told that it in fact was her heart that was causing her her current

> trouble. She was having too much oxygenated blood escape through the

> hole in her heart and was not getting what an already taxed system

> needed to survive.  If they closed the hole she would be able to

> benefit from all the oxygenated blood she was pumping thus giving a

> struggling system more healthy blood to try and use.  It made since to

> us, so we flew home and after much prayer and talking with both the

> California Mito/genetic specialist and the Cleveland Mito specialist,

> the Cardiac surgeons in Cleveland, family and friends we decided to go

> ahead with the surgery.  Our church family raised some money to help

> with our expenses 

>

> Please contact mito-owner with any problems or

> questions.

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