Wednesday, September 14, 2011 by leannweaver.

Dena and Sarah are at Johns Hopkins this morning.  Sarah is running a 102 degree fever and did not keep down her am feeding.  Please put Sarah and Dena in your prayers for a quick turn around and recovery.  I will try to keep everyone updated on Sarah’s progress.  God’s Grace and Peace to all!

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Tuesday, September 13, 2011 by admin.

Well, I kept Sarah Grace home from school today.  She complained of a sore throat yesterday, so I took her to the pediatrician.  Her sister missed a whole week of school last week due to tonsilitis.  The doctor did not see anything in Sarah’s throat or ears, but did hear some crackle in her chest, so she gave us a perscription for antibiotics.  Today, she ran a low grade fever, 99.4. 

So we are watching her and praying her fever does not go above 100 and she continues to tolerate her gtube feedings because that will send her to the hospital.

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Friday, January 28, 2011 by leannweaver.

Sarah Grace was taken to Johns Hopkins yesterday morning, Thursday, January 27th with a fever.  She didn’t have a great night but she is where she needs to be in order to get better.  We pray for the Doctor’s wisdom and for Sarah’s health today.

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Thursday, April 29, 2010 by admin.

So, we knew going into this program at KKI that we were going to exhaust Sarah’s therapy benefits for the year.  However, KKI has sent 35 pages worth of evidence to our insurance as to why they need to provide more therapies per year for Sarah Grace.  It came back today that they have denied our request.  Really no surprise there, it just means we have to take the next step.

We ask that you continue to pray for this situation.  Besides fighting to get the therapies she needs, we also have a long list of equipment we need to ask for and in my experience, insurance is going to try to get out of paying for it.  Sarah Grace has made such wonderful gains the past 6 weeks that it will be upsetting to see it be for nothing.

Just this week she walked in the gait trainer for quite a distance and made 7 consecutive steps (usually she only does 3).  Her head control has improved tremedously.  She is bringing her hand to midline and rolling onto her side.  Her communication has become more consistent. 

As Sarah finishes her last few days at KKI, I am so grateful for all they have done.  I pray that when she returns to Ruth Eason, they are able to continue the therapies started while Sarah has been in the STP.  We were happy to see Ms. Wendy, Sarah’s PT from Ruth Eason, on Monday.  She was able to observe and see just how far Sarah has come.  I just know I am going to be emotional on her last day.  She really enjoys going to STP and is working so hard there.  I have been taking picture the last few days and will post them soon.

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Wednesday, March 10, 2010 by admin.

Sarah’s visit to Johns Hopkins went well yesterday except for the 3 hour wait in the waiting room.  Her metabolic Dr. was pleased with her growth and will be letting me know in the next few days, once all the labs come back, if Sarah’s meds and/or formula need to be changed.

We were also sent to see a GI nurse because Sarah’s mic-key site (were her feeding tube enters her stomach) has been leaking.  They are making a change from a mic-key to a cubby (which for those of you who know nothing of feeding tubes is not a major deal, it is really just a brand change).  The part they are concerned about is the reason for the leakage may be that her bowel is backing up.  So we are going to keep a diary of her diaper changes and toilet usage to see if there is any change/decrease in soiled diapers.   I pray that if this is the case, we are able to resolve it easily. 

Thanks for all the prayers and I’ll let you know how her rehab clinic goes tomorrow.

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Sunday, March 29, 2009 by admin.

It has been a week since we got the letter in the mail telling us that the girls, including Sarah Grace, have been denied the state health insurance they have been recieving for almost a year now.  This means by the end of April, Sarah Grace will no long be on REM.  Patrick and I are in the process of placing the girls back on our insurance.  This is the insurance that only allows $1000 per year for durable medical equipment.  We also pay $700 per hospial stay.  Not to mention the copays for doctors visits and the added monthly cost of higher priced insurance.

I am asking your prayers on this issues because, without the REM for Sarah, it will be very difficult to get the equipment she needs.  Just this week we saw some of the technology that she could use to communicate.  Of course device we would like to persue for Sarah is almost $20,000.  It is a device that would allow her to use eye gaze to communicate.  Patrick and I got to actually use it ourselves and were amazed at how wonderful it worked.  (You can check it out at www.dynavoxtech.com).  Anyway, we have asked for a hearing and will appeal in the hopes of finding a way to at least keep Sarah Grace on REM. 

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Wednesday, November 19, 2008 by admin.

Hello Everyone,

Our friend, Lily, is in need of prayer.  As you know, she had surgery last Friday and developed walking pneumonia.  Well, her pneumonia as worsened and she is also at risk of needing a blood transfusion.  Please pray for this precious child of God and her mother.

Thank you, Dena

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Friday, October 17, 2008 by admin.

Hello everyone,

I just wanted to ask for prayers for our friend, Lily, who is in the hospital with a respiratory illness and a stomach virus.   I know how much prayer can help.

Thanks, Dena

(Lily’s website and blog is at www.thelilyfoundation.org)

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Thursday, October 2, 2008 by admin.

Sarah had a very rough night last night. Besides her stomach being upset they found she had a UTI and was treating it with antibiotics. Even though she had the antibiotics before, this time she had an allergic reaction. She started swelling up really badly. They immediately took Sarah off the antibiotics. It has been a restless night for Dena and Sarah. Patrick has gone in to visit with them and hopefully they have gotten some sleep today. They are going to try and give Sarah some food to see if she can keep it down today. Sarah is doing ok at the present time.

Please continue to pray for Sarah and the family.

Leann

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Wednesday, October 1, 2008 by admin.

Reported by Leann Weaver (Sarah’s aunt)

I received a phone call from Theresa (Sarah’s other aunt) this morning letting me know that Dena called to say Sarah was on her way to Johns Hopkins because she is not tolerating her feedings. Please keep Sarah Grace in your prayers as we find out what may be going on. Prayerfully it is something minor and there will be no complications. I will keep everyone informed when I hear from Dena or Theresa.

God’s Grace to all, Leann

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