Overall update of Asenath and Zipporrah-short

[Guest guest]

Glad the girls are doing better. I think it took about 6 weeks before Grace would lay on her tummy after the g tube, but she had the big one first. I will continue to wish your family all the best. You must be so glad to be home.

[Guest guest]

Asenath's scans showed no change so thankfully no more narrow arteries. This means we will continue to wean off the steroids over the next 7 months. She will always be in danger of strokes form the 4 narrow arteries she has and there is always a possibility of worsening so we will follow closely. She is dealing with a urinary tract infection so we will be going back to Mayo sometime soon to do more testing Otherwise, she is doing well. The trip was very tiring for her and she needs to catch up on her rest though. Zipporrah has the trachea problems I spoke of in another letter so I won't go into them all here. She is doing well with the g-tube but unfortunately will not be doing oral foods for a while at least. We will continue to update you on the girls. Thanks for your prayers. :)Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... Zipporrah (6 mon.) Mito, strokes, sensory issues, g-tube, slight tracheomalacia, tracheal ring...Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

So glad to here there were no change in her scans-- I'm sure it will

be a relief to get her off the steroids. I am amazed by you all the

time. I only have to children to deal with and you handle such a

large family with such strength.

I have a few questions regarding the scans done at Mayo. The boys

are having theirs the 7th and will be admitted the 6th to St. 's

for IV's. Will Dr. Whiteman or Dr. Renaud see us while we are

there? How long to get results--is this done at a follow up

appointment or while we are still there. What has been your

experience with St. 's? Last time we saw Dr. Whiteman he was so

busy that we hardly got to discuss any details--normally he spends

the whole morning with the boys so he must really be swamped these

days.

Thanks so much,

Kris

Cole-partial complex 1, probable thiamine responsive PDH

Zack-probable thiamine responsive PDH

> Asenath's scans showed no change so thankfully no more narrow

arteries. This means we will continue to wean off the steroids over

the next 7 months. She will always be in danger of strokes form the

4 narrow arteries she has and there is always a possibility of

worsening so we will follow closely. She is dealing with a urinary

tract infection so we will be going back to Mayo sometime soon to do

more testing. Otherwise, she is doing well. The trip was very

tiring for her and she needs to catch up on her rest though.

> Zipporrah has the trachea problems I spoke of in another

letter so I won't go into them all here. She is doing well with the

g-tube but unfortunately will not be doing oral foods for a while at

least. We will continue to update you on the girls. Thanks for your

prayers.

>

> Darla: mommy to:

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, g-

tube, disautonomia issues, hypotonia, heat/exercise intolerance,

oxygen use, asthma...

> Zipporrah (6 mon.) Mito, strokes, sensory issues, g-tube, slight

tracheomalacia, tracheal ring...Get more from the Web. FREE MSN

Explorer download : http://explorer.msn.com

[Guest guest]

Darla,

I am glad to hear the girls are doing well- I don't post that often, but I pray for you and your family as well as the others on this list often. Last night I was really thinking of you- my Maddie was sick all day just out of the blue- vomited once in the morning then wouldn't take anything- hardly even small sips of water for the rest of the day. She was running a temp of about 101 under her arm, and that is high for Maddie- her normal temp is between 96-97. She complained of stomach pain and hadn't had a bm after a huge meal the night before. I kept thinking of intestinal blockage, as my other two girls and our 2 month old baby boy seemed fine. I was up all night praying and worrying, trying not to have a panic attack everytime I heard her cry out in pain. She had a bm this morning and other than being tired, she seems ok.

I was out of my mind with worry and helplessness, wondering if this was the beginning of a downhill slide for us. I was on-line, saw some of your posts, and started thinking of the incredible strength and faith you have in the Lord. I realized that I was trying to control a situation that I could not possibly have control over, so I asked God to give me strength, to take my anxiety and help me put my trust back into him. I asked him to guide our decisions for Maddie, and for His Will (not my own) to be done. He took my anxiety- all I had to do was let go. I actually felt myself exhale! I know this all may sound strange to you- you don't know us at all, but I feel as though I know you and your family so well- I just had to let you know that you are an inspiration (to me!) and that God is working through you every day. God Bless you and your beautiful family.

Holly Rubio

(and na, Maddie, Malerie and )

Overall update of Asenath and Zipporrah-short

Asenath's scans showed no change so thankfully no more narrow arteries. This means we will continue to wean off the steroids over the next 7 months. She will always be in danger of strokes form the 4 narrow arteries she has and there is always a possibility of worsening so we will follow closely. She is dealing with a urinary tract infection so we will be going back to Mayo sometime soon to do more testing Otherwise, she is doing well. The trip was very tiring for her and she needs to catch up on her rest though.

Zipporrah has the trachea problems I spoke of in another letter so I won't go into them all here. She is doing well with the g-tube but unfortunately will not be doing oral foods for a while at least. We will continue to update you on the girls. Thanks for your prayers. :)Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... Zipporrah (6 mon.) Mito, strokes, sensory issues, g-tube, slight tracheomalacia, tracheal ring...Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com