Re: Logan's genetics appointment

[Guest guest]

I'm sorry that the appointment didn't go the way that you wanted it to.

Doctors can only give what they think might happen. I hope that Logan can prove

them wrong. Hoping you have some better days ahead. Good luck on the muscle

biopsy.

Lots of Love

(poly jra and spondy, 19)

[Guest guest]

Kim..

I am so sorry about the causal way the doctor ask some things. it

might be matter of fact to them, but its life altering for your

family. I think some of them need to take courses in compassion.

Let us know what you find out from the testing.. good luck.

Hugs Helen and (6,systemic)

> Well,,,I think I'm calm enough to tell ya'll about the week from

hell

> I've had. We had Logan's appointment with genetics,on Monday. I hate

> going to those appointments by myself,,cause you never know what

> curveball they might throw my way. But nobody could go with me,,so

it was

> just me,Logan and Ethan. The genetics Dr feels that Logan's

problems are

> caused from a muscle disorder,,not so much the connective tissue.

(one

> step forward,,2 steps back) She said that his muscles are weak,,and

that

> he really has very little muscles,at all. That is why his legs get

so

> tired,,he just doesn' have enough strength and they get tired out.

She

> said he is in the 50% on height and 25% on weight,,which she said

is a

> good thing,,because if he had alot of weight to carry around,,he

would be

> in really bad shape. She is going to do a muscle biopsy,on July

21,,while

> he is knocked out,for the MRI . She said that it may or may not

give us

> results,,apparently they are sometimes inconclusive. I told her that

> Logan had alot of trouble walking very much,,that his legs get

tired,,and

> she very casually said " Well he might need a scooter when he gets

to be

> a teenager " WHAT THE H@#% ? How can they just casually mention

> something so very huge ??!! I was completly blown away. I called

the

> nurse after I got home,and talked to her about it,,and she told me

that

> the Dr didn't think that Logan would lose his ability to walk,,just

that

> he will likely need some extra help,,on outings and stuff,,as he

gets

> older. I told her that I was still under the impression that he was

going

> to outgrow this,,and she said that no,,he will most likely not

outgrow

> this. This is a very devastating blow to me. It amazes me how they

are so

> casual about some of the things they say,,,like, " The surgeon won't

have

> to go very deep to get the biopsy,,because he has very little

muscle "

> Those kinds of statements are so shocking to hear.

> So that covers it,,,lovely week,,,we meet with the surgeon on

> Monday,,and it is scheduled for July 21.

>

> Love,

> Kim and Logan

>

> ________________________________________________________________

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[Guest guest]

Hi Kim,

I am so sorry to hear about all that's been going on. I hope that

todays' meeting the surgeon will go well. You'll both be in our

thoughts. Please be sure to send an update, whenever you can.

With Love and Aloha,

Georgina

Kim D wrote:

> Well,,,I think I'm calm enough to tell ya'll about the week from hell

> I've had. We had Logan's appointment with genetics,on Monday. I hate

> going to those appointments by myself,,cause you never know what

> curveball they might throw my way. But nobody could go with me,,so it was

> just me,Logan and Ethan. The genetics Dr feels that Logan's problems are

> caused from a muscle disorder,,not so much the connective tissue.(one

> step forward,,2 steps back) She said that his muscles are weak,,and that

> he really has very little muscles,at all. That is why his legs get so

> tired,,he just doesn' have enough strength and they get tired out. She

> said he is in the 50% on height and 25% on weight,,which she said is a

> good thing,,because if he had alot of weight to carry around,,he would be

> in really bad shape. She is going to do a muscle biopsy,on July 21,,while

> he is knocked out,for the MRI . She said that it may or may not give us

> results,,apparently they are sometimes inconclusive. I told her that

> Logan had alot of trouble walking very much,,that his legs get tired,,and

> she very casually said " Well he might need a scooter when he gets to be

> a teenager " WHAT THE H@#% ? How can they just casually mention

> something so very huge ??!! I was completly blown away. I called the

> nurse after I got home,and talked to her about it,,and she told me that

> the Dr didn't think that Logan would lose his ability to walk,,just that

> he will likely need some extra help,,on outings and stuff,,as he gets

> older. I told her that I was still under the impression that he was going

> to outgrow this,,and she said that no,,he will most likely not outgrow

> this. This is a very devastating blow to me. It amazes me how they are so

> casual about some of the things they say,,,like, " The surgeon won't have

> to go very deep to get the biopsy,,because he has very little muscle "

> Those kinds of statements are so shocking to hear.

> So that covers it,,,lovely week,,,we meet with the surgeon on

> Monday,,and it is scheduled for July 21.

>

> Love,

> Kim and Logan

[Guest guest]

I agree with Helen, sometimes these drs deal with this all the time so

to them it is very matter of fact while to you it is life altering to

hear this. Would physical therapy help in anyway? It is good you were

able to call and speak with the nurse and get more specifics. I am sorry

things are like this for you. Good luck, Michele (17, pauci &

spondy)

Logan's genetics appointment

Well,,,I think I'm calm enough to tell ya'll about the week from hell

I've had. We had Logan's appointment with genetics,on Monday. I hate

going to those appointments by myself,,cause you never know what

curveball they might throw my way. But nobody could go with me,,so it

was just me,Logan and Ethan. The genetics Dr feels that Logan's problems

are caused from a muscle disorder,,not so much the connective

tissue.(one step forward,,2 steps back) She said that his muscles are

weak,,and that he really has very little muscles,at all. That is why his

legs get so tired,,he just doesn' have enough strength and they get

tired out. She said he is in the 50% on height and 25% on weight,,which

she said is a good thing,,because if he had alot of weight to carry

around,,he would be in really bad shape. She is going to do a muscle

biopsy,on July 21,,while he is knocked out,for the MRI . She said that

it may or may not give us results,,apparently they are sometimes

inconclusive. I told her that Logan had alot of trouble walking very

much,,that his legs get tired,,and she very casually said " Well he

might need a scooter when he gets to be a teenager " WHAT THE H@#% ?

How can they just casually mention something so very huge ??!! I was

completly blown away. I called the nurse after I got home,and talked to

her about it,,and she told me that the Dr didn't think that Logan would

lose his ability to walk,,just that he will likely need some extra

help,,on outings and stuff,,as he gets older. I told her that I was

still under the impression that he was going to outgrow this,,and she

said that no,,he will most likely not outgrow this. This is a very

devastating blow to me. It amazes me how they are so casual about some

of the things they say,,,like, " The surgeon won't have to go very deep

to get the biopsy,,because he has very little muscle " Those kinds of

statements are so shocking to hear.

So that covers it,,,lovely week,,,we meet with the surgeon on

Monday,,and it is scheduled for July 21.

Love,

Kim and Logan

________________________________________________________________

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Web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to

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