for kristine

[Guest guest]

e: I am so behind on reading mito list due to school starting and the long weekend. Thanks for your sweet thoughts before our appt at the Waisman Ctr last week. It was so nice to meet you (ever so briefly) and now to have your face in my mind. I wish we could have talked longer. Our appt ended up going until 12:30 and I had to race out of there to be at school meetings for the boys at 2 PM. Did you end up getting in very late? I want to thank you for telling me about Dr. Wolfe and the clinic ahead of time. It helped me know what to expect. They all seem very knowledgeable albeit without any magical answers. (Does anyone have those????Don't we all wish). He helped us understand how the tests can look like the boys have a disorder of fatty acid oxidation even though they do not primarily have one. I guess in some cases of mito, as things get worse, these pathways get broken too and the child develops a secondary FOD. This was not good news of course but it helps our primary doctor and I to understand. They had several suggestions, though they were careful to say that none of them would make a huge difference. Just tweaking things here and there. They seemed pretty blown away by Sam's issues and did not feel they had a lot to add. Still I am glad we had the appt and it is always good to have someone look things over to make sure we are not missing anything. I hope your appt went well. I am sorry we did not have more of a chance to talk. Anne Date: Mon, 30 Aug 2004 13:28:19 -0500 From: "e" <Subject: For Anne JuhlmanDear Ann,I just wanted to wish you blessings for the boys at their appointment tomorrow at the Waisman Center. I hope to see you, but in case I don't, I just wanted you to know you have my prayers.e *Ü*[

[Guest guest]

Hi Anne,

It was so nice to meet you too! I know everyone was so busy at the clinic and they were running behind so there was no time to chat, but that's ok. At least we got to say hi in person. *Ü*.

I am so glad that Dr. Wolff was able to help you! I have been wondering if they were able to give you some ideas to help the boys. I have to say that I think you picked his brain too much, because by the time he got to me, he barely had anything to say to help my son! LOL! I think he just doesn't know what to do with my son to tell you the truth. Oh well. I should be counting my blessings instead of complaining. He does look well, but we all know that can be very deceiving.

Take care Anne!

e *Ü*

For Anne JuhlmanDear Ann,I just wanted to wish you blessings for the boys at their appointment tomorrow at the Waisman Center. I hope to see you, but in case I don't, I just wanted you to know you have my prayers.e *Ü*[Please contact mito-owner with any problems or questions.

[Guest guest]

HiAnne:

Did you meet Sandy at all while there? They have all been a big help with

us in regards to Leah. We are in more contact with Sandy now than Dr.Wolff.

Sandy will spend time with you on the phone if you have a question and

I've emailed her several times with questions. And of course Punky always

greeted us with a smile. And when we had a talk the last time with Sandy

she even had some students watch and play with Leah in the waiting room to

occupy her. I look at your visit as a good educational visit for the clinic.

Not only in the kids illness issues, but you as a parent and how you are

dealing with this and your knowledge of everything. Did the boys fare well

with the travel? Leah is still being tested through there. Right now her

blood and muscle biopsy and my vial of blood is at town University.

So checking on a few things. Will need to email Sandy with a few more questions.

Take care. Thinking of you often.

Nerenhausen

mom to Leah

Anne K Juhlmann wrote:

e:

I am so behind on reading mito list due to school starting and the long

weekend. Thanks for your sweet thoughts before our appt at the Waisman Ctr

last week. It was so nice to meet you (ever so briefly) and now to have

your face in my mind. I wish we could have talked longer. Our appt ended

up going until 12:30 and I had to race out of there to be at school meetings

for the boys at 2 PM. Did you end up getting in very late?

I want to thank you for telling me about

Dr. Wolfe and the clinic ahead of time. It helped me know what to expect.

They all seem very knowledgeable albeit without any magical answers. (Does

anyone have those????Don't we all wish). He helped us understand how the

tests can look like the boys have a disorder of fatty acid oxidation even

though they do not primarily have one. I guess in some cases of mito, as

things get worse, these pathways get broken too and the child develops a

secondary FOD. This was not good news of course but it helps our primary

doctor and I to understand. They had several suggestions, though they were

careful to say that none of them would make a huge difference. Just tweaking

things here and there. They seemed pretty blown away by Sam's issues and

did not feel they had a lot to add.

Still I am glad we had the appt and it

is always good to have someone look things over to make sure we are not

missing anything.

I hope your appt went well. I am sorry

we did not have more of a chance to talk.

Anne

Date: Mon, 30 Aug 2004 13:28:19 -0500

From: "e" <

Subject: For Anne Juhlman

Dear Ann,

I just wanted to wish you blessings for the boys at their appointment tomorrow

at the Waisman Center. I hope to see you, but in case I don't, I just wanted

you to know you have my prayers.

e *Ü*

[

Please contact mito-owner with any problems or questions.

This message scanned for

viruses by CoreComm