Re: Re: Ann- Returned from dance competition

[Guest guest]

Hi Darla:

I know when you say dance you mean using your legs and feet. I

have an adult woman who "dances" in her wheelchair. She moves and

turns and twists that chair around to the beat of the music. We also

"dance" with Leah. We hold her and move to the music and she laughs

and my husband kiddingly said he knows what he feels like to have a 30

pound beer belly on him when holding Leah. Also if Asenath can stand

you can swing her arms and such around and have her sway to the music.

Just an idea for "dancing". Dancing isn't just kicking, it's how

you move the body to the beat of the music. May be hula dancing.

That is a slow dancing and involves more of the arms than anything else.

My oldest neice has low muscle tone and boy can she do a beautiful slow

moving hula dance. Ballet in the upper arms. Just a thought.

Proud of how much Luke has accomplished and with all going on in your household

he does more than other kids in an "average" household. Way to go.

Wish we could see a "movie" of him on line for us to see. Good luck

with the next competition.

Nerenhausen

mom to Leah

Darla Klein wrote:

I am not sure about

taking the whole family or not yet. It depends on how long we will

need to be there. Probably will though as it would be a vacation

time for them. Our kids have taken dance for the past 8 years and

just this year cut back some due to the issues Asenath and Zipporrah have

had. My hubby's sister owns a dance studio about 1 hour away from

where we live and so we "reluctantly" have traveled there for the past

8 years. It started to become a 4 times a week thing and so this

past year we had to cut back some. We do love dance and enjoy seeing

our kids dance but it has at times been a burden. I REALLY want to

see Asenath dance some day. I don't realistically think she would

do well but it would be so neat to see her having fun trying. My

two year old, Marquis does perfect splits already from watching the others.

He tries to stand on his head and do ! other tricks as well. It's

so funny. Luke has been tumbling for all these years and now can

do almost anything. He does the back tucks (no handed- back hand

spring) and side aerials (no handed-cartwheel) and he is 185 pounds at

5 ft. 9 in. He does Tap, Lyrical, Jazz, hip-hop, and tumbling.

Next year he is adding football so dance will be a half-year thing.

He is already active in his church youth ministry team and plans to be

a missionary to Asia after college. He has big plans! I just

wish he weren't growing up so fast and yet am very proud of him and desire

to see him succeed in his dreams. Darla

Re: Returned from

dance competition

Dear Darla,

I am so happy for Luke. That is wonderful that he did so well! So

when Luke goes to the next competition, will you again take the whole

family? Wow Dallas or Orlando...I need an exciting vacation.

I feel for you in the quest to help resolve feeding issues with

Porrah. My heart goes out to you. was on a ng tube during the

first 17 days...because of poor weight gain, reflux issues. I have

no

idea what its like over the long term. You will continue to being in

my prayers.

Hugs

Ann

> Could you tell I was tired and in a

rush about the competition? I didn't even say where it

was being held for ye MINN

people! Too short of a notice to attend I am sure any way, but

for

those of you that prayed, thank you! Luke did great! He

qualified

for Nationals in all three of his numbers. One of his numbers

received the highest points of the whole competition! This is

a

great honor! His solo was awesome and received lots of comments.

He

received a gold metal and moves on to Nationals in either Dallas,

Texas (probably) or Orlando, Florida in June. It is nice to be

home

though as we took ALL 9 kids.

> Porrah has been vomiting after just

2 oz. of feeding so we are

wondering if the tube is really not helping her or if the formula is

the issue again. I am going to try the Enfamil again and then

ask

for the Neocate if that doesn't help. The g-tube is starting

to look REAL nice now!!! But boy do I wish she could

just suck from a

bottle. She gets nothing and fights even trying it now from bottles

and only nurses for 1-2 minutes before giving up on that except for

at night while falling to sleep. The tube is her only way to

get

enough nutrition at this point.

>

> 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 (NG-

tube)/breathing issues...

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