Emotional day

[Guest guest]

I had a consultation with my ped,on Friday. It was a very long,emotional talk.

We went round and round about testing versus not testing.I want more tests

done,for Logan,,to see what he has,,and the neuro thinks it wouldn't make any

difference,,so why test.Since the neuro is so hard to get ahold of,,and we have

been with the ped,for 7 yrs,,I talked to him.

We talked about all the pros and cons,,I asked him,how would he feel if this

was his children,(they had to wear the helmets,when they

were younger,because they had misshapen heads) What would he have said if he had

taken them to the Dr,,and told him that he thought they needed the helmets,,and

the Dr had said " yes,they might,and we could do some testing,,but we aren't

going to " He kinda looked surprised,and said he saw my point. He said that the

unknown is what is so hard,and he understood that,,and that he would talk to the

neuro for me.He told me that Logan is the only child that he has known for 7

yrs,,and run countless tests,and is still no closer to knowing what is wrong

with him,than the day he started.

Then he told me (and this is the reason I love him,,he is soooo kind,and

sincere) he said " I will always be here for you,,I will fight for Logan till

the day I die,,when all the other specialists have done all they can do,,and

have finished working with you,I will be here,helping you learn to live with the

unknown,,,because that is the hardest part,living with the unknown,,,and I will

ALWAYS be here for you " I almost cried ! It was the nicest,most sincere thing I

have ever heard. It just made him seem so much more a part of Logan's life,,and

I know I have the worlds best advocate !

We also talked about what to do for Logan's fatigue,and leg pains. He told

me that I need to get him a medical stroller,,or a wheelchair. That was very

hard to hear. I think that was the hardest thing in the world to hear. I know he

needs something to help him,,but it is so hard to hear. I will call Logan's case

manager,for Medicaid on Monday,,and get the ball rolling,,I think. I know I need

to,,but I'm not sure if I can. It is sooo heartbreaking.

Well,,,,that is all,,another emotional day.Look for more drama,next week. We

have Katelyn's endo appointment,her VCUG/bladder scan,(she is still having the

enuresis),Meaghan's eye exam,,Logan has to get fitted for new orthotics,I need

to call the audiologist to schedule an appointment,various therapy

appointments,,and MY MOM IS COMING FOR A VISIT !! AGGHGHHH,,,she drives me

insane. She is the Queen of Denial,,so she should get a rude awakening,making

all the Dr rounds with me.HEE HEE

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital

myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

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[Guest guest]

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> We also talked about what to do for Logan's fatigue,and leg pains. He told

me that I need to get him a medical stroller,,or a wheelchair.

You might want to see if your physician will do this for you. We got a Convaid

for our . You need a script for one. We were fortunate because both our

PT, physiatrist, and pedi said we needed one. If your son walks, it is a bit

more

difficult to get one. The script needs to say something to the likes of this--

cannot walk community distances. We got denied and had to appeal. But

's Convaid Cruiser is really, really cool. It is purple and it folds up

like an

umbrella stroller. Unfortunately, it was very expensive.