Mayo update for Asenath and Zipporrah

[Guest guest]

Glad to hear things are going well. We've been thinking about you.

Anne R

[Guest guest]

Glad to hear the girls are doing well. I will keep praying that Asenath's brain scan looks good. You guys are definatly due for some good news.

[Guest guest]

We are pretty tired but are happy the worst part of the week is over at

least. We came up last Wednesday and needed to stay for pre-operative

testing on Thursday and then the g-tube placement, fundo-wrap, muscle/skin

biopsy, and three tests on her trachea were done on Friday. All went well

and she has been recovering well. At first it was hard to not feed her and

watch her as she searched for food desperately but now we are at goal rate

with her enteral feeds and she is doing good with them. We learned that she

has a mild tracheomolacia (spelling probably off) and does have some sort of

a tracheal ring that will be further investigated by Dr.

(Ear/nose/throat doc). We have been very pleased with the docs and their

care for her. She was released from the hospital today (Monday).

Asenath had her brain scans today and we will find out the results

tomorrow and will be adding some urinary testing as well. We will have a

busy day both tomorrow and on Wednesday and hope to be able to relax some in

the evenings at the Mc House again. I am pretty exhausted and

will keep this short but will update you all more later when I get the

chance. Thank you all for your prayers. Both girls did well with

anesthesia.

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/breathing issues...

_________________________________________________________________

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[Guest guest]

Darla,

It sounds like you must me exhausted! Glad to hear Porrah did well with the surgery. I remember when Amie had to give up breastfeeding Audrey, it nearly broke her heart. She still holds Audrey in the classic breastfeeding hold and I think Audrey still remembers when. She will nussle in just like she did when nursing. I hope you get good news concerning Asenath's testing. Try to get some rest and keep us posted as your time allows. Know that we are all praying for all of you.

Kathy, grandma to Audrey, 32 mos

[Guest guest]

Dear Darla,

Glad to her Asenath and Zipporrah are doing better. Please know yuo

are still in our thoughts and prayers.

Ann

>

> We are pretty tired but are happy the worst part of the week

is over at

> least. We came up last Wednesday and needed to stay for pre-

operative

> testing on Thursday and then the g-tube placement, fundo-wrap,

muscle/skin

> biopsy, and three tests on her trachea were done on Friday. All

went well

> and she has been recovering well. At first it was hard to not feed

her and

> watch her as she searched for food desperately but now we are at

goal rate

> with her enteral feeds and she is doing good with them. We learned

that she

> has a mild tracheomolacia (spelling probably off) and does have

some sort of

> a tracheal ring that will be further investigated by Dr.

> (Ear/nose/throat doc). We have been very pleased with the docs and

their

> care for her. She was released from the hospital today (Monday).

> Asenath had her brain scans today and we will find out the

results

> tomorrow and will be adding some urinary testing as well. We will

have a

> busy day both tomorrow and on Wednesday and hope to be able to

relax some in

> the evenings at the Mc House again. I am pretty

exhausted and

> will keep this short but will update you all more later when I get

the

> chance. Thank you all for your prayers. Both girls did well with

> anesthesia.

>

>

> 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/breathing

issues...

>

> _________________________________________________________________

> From must-see cities to the best beaches, plan a getaway with the

Spring

> Travel Guide! http://special.msn.com/local/springtravel.armx