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Family Support page started: April 09

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June 10, 2009

 

A Letter from the  Turner family.

We would like to let you know the changes that have recently come about with Mariah's Mitochondrial Disease. We have had a rough spring, Mariah started having seizures in February, and the last day she went to school was March 20th.  Many seizures and very weak her entire body is now "floppy" and she can no longer talk.  I have been making calls to Dr. Saneto at Seattle Children's all spring and the child neurologist in Spokane -she actually saw them March 17th. I was pretty sure her issues were with messed up seizure medication ... too much, too little, wrong ones or something that was causing all this.  They have been telling me the past several weeks unfortunately they think the disease is progressing -and I thought how can they say that when they haven't even seen her?  Well she continued to have seizures and had stopped breathing after the seizures for just a short time 2 different times.  Then 2 weeks ago today we left her with a caretaker and she had a seizure and stopped breathing, the caretaker called the neighbor and 911 -we were just up the road about 25 miles and she got a hold of us, we turned around and beat the ambulance here.  We were admitted to Sacred Heart in Spokane and she had another seizure that evening and stopped breathing, they sent us quickly to Peds ICU.  The next day her neurologist ordered an MRI and that evening he showed us how progressed the disease is.  Her brain has just really been attacked by this and there is significant changes even since last October's MRI.  The MRI in October was done at Seattle Children's but we didn't see it or go over it with Dr. Saneto, if we had I think we'd have realized then that it had really progressed.  He did not have anything to compare with so maybe that is why he didn't cover it with us -I am not sure.  Anyway they don't really think she will get better and we really don't know how much time she has left, they hooked us up with Hospice when we came home and she has been holding her own pretty much.  A week ago Saturday after coming home on Thursday she stopped breathing here, this time it was not after a seizure though, she started breathing again on her own and we now have oxygen here to use if needed.  She has not done that since.  She mumbles and tries to talk but really can't even get a word out, we so wish we could know what she is trying to say. I will try to keep you posted on what is going on but wanted to let you know and ask for prayer.

 

Brenda Turner

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 June 4th, 2009      

 

  Visiting Mariah

Sundii  and I Went to visit Mariah and the family Thursday June 4th. It was very nice to finally see Mariah and the family  after hearing the news. We wanted to go visit  and show our support. We took pictures with Mariah. At our visit we talked to her, held her hand and rubbed her arm. No response. This is not the Mariah we knew. How things have changed so quickly. We had a good visit with Paul and Brenda and Trent. Looked at pictures of Mariah and the three boys Jacob, Ian, and Trent growing up. Very handsome  and well rounded young men I must say.. 

Had drinks and snacks and visited some more.  We relieved some stress by 4 wheeling  with Paul  on top of  really steep  mountain. It was such a beautiful  area. Took  a bunch of amazing scenery pictures, Also visited with the pigs and headed in to say good bye. Had a great time. The Turner's are such great people.

           

                     

                   See Mariah's Photo Album, It is called Visiting Mariah,

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Mariah's Pink Ponytail Holder

I borrowed that ponytail holder a day in June,

The very next day

I pulled the Pink ponytail holder from my hair,

Tears started falling from my eyes,

Had a lump in my throat, and got choked up,

Now that she has passed, 

Ill Only wear it on special days, 

I will remember that special girl forever and always.

By, Stephanie Varney

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June  5th 2009

 What a crime  Muscular Dystrophy is...

                                                                      My visit with Mariah June 2009, 

                                             This time Mariah didn't call my name, 

She was constantly gazing out her window pane.

Her red locks up in a teeny bopper bun,

Layin in her recliner, she's was surely having no fun, 

 In pink jammies and fuzzy socks too.  

  I noticed  she could use some cuddlin, 

Or was it me needing some lovins?

So many more seizures to indure,

Her vision is lost and sees only a blur, 

Now her hearing is muffled  in both ears. 

Such an innocent little thing,  Shes just thirteen.

Now really what can she do?

Doctors say prognosis is not so good.

Now really what do we do?

We must wait day's, month's or even a year,

Oh how we will miss our blue eyed country girl.

 What a crime  Muscular Dystrophy is...

by,  Stephanie Varney