welcome to new ones

[Guest guest]

Hi to Everyone:

My name is Nerenhausen to all the new ones on the group. I've been

vacationing at our summer place and have not had access to a computer

until now. I had over 800 emails to go through. WHEW!!!

Anyway, welcome to the new members, congratulations on the ultrasound to

and prayers are with all others that need them during this time.

I've been thinking of everyone during this past month of July.

Our summer has been going well. Very good weather. No need to use the

air conditioner until just the other day and that was because my mom was

baking three cherry pies for our dinner that night. Leah has been doing

well. After her eye surgery her eyes look so much better and

straighter. But what we are dealing with right now, is after a month of

following doctors orders for her muscle biopsy site, it has become

infected. Our ped feels it was from the lake water. But this was way

after the deadline for getting her suture area wet; so I was a little

surprise by this. But we left the Island and we stopped in Sturgeon Bay

for gas and food and when Leah didn't even really want to eat her french

fries the first words out of my mouth were, gee I hope she isn't coming

down with something. Mother's instinct because took her in to get

her thigh checked out and she had a fever of 101 degrees. She is on

antibotics and the site looks alot better today after being covered up

and with an antibotic cream on the site. But now her brother,

came home from scout camp late last night and he said his throat hurt a

bit. He played all day and then complained that it felt like he had

canker sores. Well looked in his mouth and he had little pimples on

several parts of his mouth AND 102.6 fever. So he is in our bedroom

away from Leah, but I think she has some of these pimples in her mouth,

too. So we may not head to the Island again until Friday. I feel safer

down here near her doctor and a good hospital. So that is that for now.

But I wanted to chime in about family. I feel for you whose family

can't and/or won't understand this disease. I know each person is

different in how they can handle things. And I believe its more

difficult for family to understand when they see a child running and

playing around and then having a parent restrict them from other

activities. It is up to us as some one stated to educate others around

us. I've been blessed with good doctors for our kids and family members

who are willing to take care of Leah and play with her. They also

understand about illness and her cousin who is taking care of Leah while

I work this summer had a bad cold and asked if she should be taking care

of Leah that day. I told her it was ok because she has had the cold for

several days now and is really past the contagious stage but I thanked

her for thinking of Leah. As for the handicap parking there was an

article in our paper from someone stating why should people who use

handicap parking to park so close and then walk all over the mall. Well

another person wrote in and said that we don't know what that persons

disability is. That may be if they walked farther away in a parking lot

that they may have difficulty in the store. We shouldn't judge a person

who uses handicap parking just because they aren't in a wheelchair and

to see their disabilty. Yes, there are people who abuse the parking

spot who don't need it; but we wish people would ask in a nice tone

instead of ranting and raving in a persons face. I like what I believe

it was Ann said; please get out a piece of paper and write this down.

And to say it in such a way so that their mouth drops open. It is a

hard and difficult life we lead as care givers of mito children and also

for some of us having this disease as an adult. We walk a fine line and

all we can do is balance to the best of our ability and educate,

educate, educate others in not only dealing with this disease, but

dealing with all people with different disabilities. I dislike reading

about doctors who don't have a clue what is going on and pretty much

brush us off. The movie about a doctor getting sick ( Hurt was

the actor in it) and realizing that bedside manners do make a

difference. I hope we all have better times a head of us and take each

days as it comes. At least we have a place to vent and rave for others

to understand and console us and lead us down the right path. It's been

interesting reading all the emails. My mind is swimming with

information; good stuff. I look forward to staying on top of my emails

with all you guys. Being away from the main home is fun and relaxing,

but playing catch up is a whole nother story. Ann, would I still have

time to give you my story and if I mailed it because of not having

access to a computer at our summer place is that possible? If not, no

big deal. There are wonderful stories and poems that will make the book

a joy to read. It may help some one else with information; sort of an

aha moment. Take care everyone.

Nerenhausen

mom to Leah