Re: B.

[Guest guest]

Leah,

Your post about Olivia and how she is doing really put a little

joy....and hope in my heart. It is so encouraging that the parents

of her classmates are being so open and asking you questions instead

of the dreaded stares.

It is so great that the school is making changes to accomodate her,

and the other little ones in the school. That will be so great for

her to use a drinking fountain where she won't have to use a

stool! )

I was touched by your cute note also. I can totally relate to the

fact that you said you cringed a little when that little boy said

Olivia is always last, but she is so awesome about it and instead

allows herself to have fun and not beat down by being last. Just

tell her that it doesn't matter what place she comes in when she is

running, because she is always first place in your HEART! )

Olivia is so awesome. And that she is doing so well just lifts my

spirits.

Jodi R.

> > >

> > >

> > > Hello to all!

> > >

> > > We were up in Edmonton this morning for a Ped. check-up

> and....

> > > Drum roll please.... Olivia has gained 1/2 a pound since the

> > > convention!! She is officially now about 19lbs. There's been

> no

> > > growth but that's OK since the goal right now is to get some

> meat

> > on

> > > her bones, not height velocity.

> > > The Dr. really likes the smoothie concoction that we've made

> > even

> > > though it is quite high in sugar, with Olivia still being very

> > > underweight we don't have to worry a lot about IR right now so

> we

> > > can still give her the high cal smoothies.

> > >

> > > That's about it for now!

> > > Take care everyone,

> > > Leah, mom to 9 years and Olivia 4.75 years, 19lbs!!,

33 " ,

> > > RSS, OI

[Guest guest]

leah,

olivia sound like she is ajusting to school great how about mom is she doing

good with it tooo it is great to see the school is taking such an active role in

helping her out

hugs cara mom to jacob

Hi there!

Olivia's doing great in school! Her chair and sitz cushion

haven't come in yet but they should be here soon. The letter went

over great and although we haven't had any phone calls ( I didn't

really expect any) a lot of the parents at school ask questions and

comment on her. I'm so glad that they're not afraid to ask me about

Olivia and it really seems to cut down on the stares since they

curiosity is quenched! Snacking is going great and the other kids

aren't bothered by it at all.

The PT came to the school for 3 hours and observed Olivia in the

entire school and with her funding there's going to be some great

changes! In the bathroom they're going to split the dual sink

countertop and lower one sink to her level (and the level of the pre-

k kids), they're also going to lower 2 of the water fountains so

that she doesn't need a stool! There are still a few things to go

over but for now everything is falling into place wonderfully!

On a cute note... The PT and I were observing gym class and they

were doing a lot of running, 1/2 way through one little boy

said " Olivia's always last " , immediatly I tensed up and started to

get misty eyed and wounded for my girl when Olivia pokes her head

out of the line and says " I'm having fun! " I was so proud of her!

Leah, mom to 9 years and Olivia 4.75 years.

> >

> >

> > Hello to all!

> >

> > We were up in Edmonton this morning for a Ped. check-up

and....

> > Drum roll please.... Olivia has gained 1/2 a pound since the

> > convention!! She is officially now about 19lbs. There's been

no

> > growth but that's OK since the goal right now is to get some

meat

> on

> > her bones, not height velocity.

> > The Dr. really likes the smoothie concoction that we've made

> even

> > though it is quite high in sugar, with Olivia still being very

> > underweight we don't have to worry a lot about IR right now so

we

> > can still give her the high cal smoothies.

> >

> > That's about it for now!

> > Take care everyone,

> > Leah, mom to 9 years and Olivia 4.75 years, 19lbs!!, 33 " ,

> > RSS, OI

[Guest guest]

Hi Jodi,

October 2 at 1pm at the Natulius is great with me. I already lined my mother up

to babysit.

Jodi Zwain wrote:

,

My mom and her husband gave up on Florida and came up here for a

week. They are driving back tomorrow.

As for October 2, how about the Nautilus Diner at 1pm? Or, if you

prefer, I can meet you at the Plaza Diner at the same time.

Jodi Z.

[Guest guest]

Thanks for the note, . Nice to hear from you. Overall the

girls are doing ok presently. Zipporrah has a virus (like usual) and

dealing with fatigue issues and we are wondering if she has immune problems

due to iron levels and IgG/IgM/IgA levels and will be testing her further

for issues there. Asenath is doing much better with the vomiting since

starting Zofran and back on steroids again. When we went off the steroids

she feel apart big time and had about 4 strokes, a couple of which affected

her quite a bit cognitively. We wonder if she will ever be able to

successfully get off steroids. She too has a virus but thus far is handling

it well. I go back to Mayo to see Dr. Whiteman on the 7th of February and

will discuss several issues on my mind with him including the biopsy and

find out if there is going to be any further hope of getting conclusive

results for the girls in the future. It looks grim that way as we just

can't afford (nor really desire presently) to travel to Shoffner or Cohen to

redo a biopsy. Dr. Whiteman is beginning to feel Zipporrah is more affected

metabolically than Asenath and sadly my hubby and I have felt the same way

for the past half a year. I am so happy your daughter has been doing well.

I am sure she is so treasured and given tons of love. Thanks again for

writing and keep in touch.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Darla

Hi Darla,

I read about Mayo not sending the muscle biopsy, that is so awful!! What

did they ever figure out? Did they apologize? When Aspyn was first

diagnosed we went to Mayo, Dr. Whiteman ordered a bunch of blood work, when

we took her to the lab they stuck her at least 12 times, they poked

everywhere they thought they could get blood, it was so awful, they tried in

her head, neck, groin, and feet...when they finally got what they needed, we

left, the next day we had to go through it all again because the lab ran the

same test twice and wasted her blood. I just cried watching....it wasn't

fair that she had to go through all of that, she was bruised from head to

toe, and of course the lactic acid was not accurate because of all the

trauma. I just wanted to tell you I am sorry that Poorah had to go through

all of that for nothing, if those people only knew the trauma our children

have to go through in the first place.

How are the girls? I read some of the posts, but lately I have had a really

hard time reading them, so some of them I have just been deleting. I hope

all is well and that the girls are doing good. You are all always in my

thoughts and prayers!!

Thinking of you all always,

Wayne, , Gentry and ~Angel Aspyn~

www.aspynblock.com