Re: Mayo trip today

April 21, 2004

Dear Darla

I am praying for you and baby Zipporrah. It is such a hard decision to make when it comes to any kind of surgery. But you'll be ok. I am praying for the doctors to be at their best, and praying that God will ease your butterflies and stress and pain. After 3-4 weeks you'll think it's the best thing you've ever had. I remember when Colby had his put in, I was so angry at the G-tube, and then it became a close friend! Take care and let us know how everyone is doing Friday. I didn't realize that you had two mito babes. So you have been here before, sometimes for me it is hard to go back to things we've done again, but at least you'll know what to expect.

God Speed

mom to Colby,14,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 11, also healthy> >Reply-To: Mito >To: "List Mito" <Mito > >Subject: Mayo trip today >Date: Wed, 21 Apr 2004 10:47:41 -0500 > > We are going to see the surgeon today concerning a g-tube placement for Zipporrah. If all goes well we will be doing the operation on Friday For the past three days EVERY meal Zipporrah has had has been lost. Boy do I hate reflux! She still can't get the hang of the bottle, breast feeding wears her out quickly, and the NG-tube is creating more mucous, reflux, and tape allergies, so...Mayo suggested placement sooner rather than later. Please pray that I can explain all that has been happening accurately and that they will understand. I am taking a note from the pediatrician who says she wants one placed as well as knowing Dr. Whiteman wants one placed, whom the surgeon could talk to. It is just that terrible GI doc we saw who could make problems because she didn't take the time to find out what truly was going on but took one look and said she was fine Pray she has NO influence in the situation! I am getting pretty frustrated with the current method of feeding and reflux problems. > >Darla: mommy to: >Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... >Zipporrah,(5 mon.)Mito, strokes, sensory issues, feeding/breathing issues..Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Is your PC infected? Get a FREE online computer virus scan from McAfee® Security.

April 21, 2004

Dear Darla

I am praying for you and baby Zipporrah. It is such a hard decision to make when it comes to any kind of surgery. But you'll be ok. I am praying for the doctors to be at their best, and praying that God will ease your butterflies and stress and pain. After 3-4 weeks you'll think it's the best thing you've ever had. I remember when Colby had his put in, I was so angry at the G-tube, and then it became a close friend! Take care and let us know how everyone is doing Friday. I didn't realize that you had two mito babes. So you have been here before, sometimes for me it is hard to go back to things we've done again, but at least you'll know what to expect.

God Speed

mom to Colby,14,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 11, also healthy> >Reply-To: Mito >To: "List Mito" <Mito > >Subject: Mayo trip today >Date: Wed, 21 Apr 2004 10:47:41 -0500 > > We are going to see the surgeon today concerning a g-tube placement for Zipporrah. If all goes well we will be doing the operation on Friday For the past three days EVERY meal Zipporrah has had has been lost. Boy do I hate reflux! She still can't get the hang of the bottle, breast feeding wears her out quickly, and the NG-tube is creating more mucous, reflux, and tape allergies, so...Mayo suggested placement sooner rather than later. Please pray that I can explain all that has been happening accurately and that they will understand. I am taking a note from the pediatrician who says she wants one placed as well as knowing Dr. Whiteman wants one placed, whom the surgeon could talk to. It is just that terrible GI doc we saw who could make problems because she didn't take the time to find out what truly was going on but took one look and said she was fine Pray she has NO influence in the situation! I am getting pretty frustrated with the current method of feeding and reflux problems. > >Darla: mommy to: >Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... >Zipporrah,(5 mon.)Mito, strokes, sensory issues, feeding/breathing issues..Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Is your PC infected? Get a FREE online computer virus scan from McAfee® Security.

April 21, 2004

Best wishes that everything goes well. You really should not have a problem if they can see that she is triving using the NG tube, even with it's problems. It looks like it is about her only option, so why not. Our GI gave us problems, at first, about doing the g tube. But after a conversation with Dr. Cohen, she was willing to do it herself. Now, she has made many comments about how much better she is doing since the tube. Do you know if they will be willing to go straight to the mic-key, or do they want the g tube first? Grace had to had the tube first, but it was not that bad. Have they considered doing a muscle biopsy on her also? Maybe it will give you some concrete answers to her problems. I am sure Asenath had a muscle biopsy done, but as we all know every child is different. Best wishes, praying her recovery is fast.

April 21, 2004

Best wishes that everything goes well. You really should not have a problem if they can see that she is triving using the NG tube, even with it's problems. It looks like it is about her only option, so why not. Our GI gave us problems, at first, about doing the g tube. But after a conversation with Dr. Cohen, she was willing to do it herself. Now, she has made many comments about how much better she is doing since the tube. Do you know if they will be willing to go straight to the mic-key, or do they want the g tube first? Grace had to had the tube first, but it was not that bad. Have they considered doing a muscle biopsy on her also? Maybe it will give you some concrete answers to her problems. I am sure Asenath had a muscle biopsy done, but as we all know every child is different. Best wishes, praying her recovery is fast.

April 21, 2004

Best wishes that everything goes well. You really should not have a problem if they can see that she is triving using the NG tube, even with it's problems. It looks like it is about her only option, so why not. Our GI gave us problems, at first, about doing the g tube. But after a conversation with Dr. Cohen, she was willing to do it herself. Now, she has made many comments about how much better she is doing since the tube. Do you know if they will be willing to go straight to the mic-key, or do they want the g tube first? Grace had to had the tube first, but it was not that bad. Have they considered doing a muscle biopsy on her also? Maybe it will give you some concrete answers to her problems. I am sure Asenath had a muscle biopsy done, but as we all know every child is different. Best wishes, praying her recovery is fast.

April 21, 2004

Darla,

We will cntinue to pray for you and your family. I've added you to

another prayer list. Godspeed to you/

Ann

> We are going to see the surgeon today concerning a g-tube

placement for Zipporrah. If all goes well we will be doing the

operation on Friday For the past three days EVERY meal Zipporrah has

had has been lost. Boy do I hate reflux! She still can't get the

hang of the bottle, breast feeding wears her out quickly, and the NG-

tube is creating more mucous, reflux, and tape allergies, so...Mayo

suggested placement sooner rather than later. Please pray that I can

explain all that has been happening accurately and that they will

understand. I am taking a note from the pediatrician who says she

wants one placed as well as knowing Dr. Whiteman wants one placed,

whom the surgeon could talk to. It is just that terrible GI doc we

saw who could make problems because she didn't take the time to find

out what truly was going on but took one look and said she was fine

Pray she has NO influence in the situation! I am getting pretty

frustrated with the current method of feeding and reflux

problems.

>

> Darla: mommy to:

> Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-

tube, disautonomia issues, hypotonia, heat/exercise intolerance,

oxygen use, asthma...

> Zipporrah,(5 mon.)Mito, strokes, sensory issues, feeding/breathing

issues..Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

April 21, 2004