How Will They Know?
I felt discouraged and lonely today;
Unimportant, forgotten and blue;
When in the mail came a short little note
that said, "I'm thinking of you.
I haven't seen you in quite a long time.
And I miss your dear, cheery smile . . .
But how will you know I'm thinking of you
If I don't tell you once in a while?"
It set me to thinking when I
got that note
How much those words meant to me.
If they brightened my day (and they certainly did),
How much happier others would be
If we showed them our love and told them we cared
With kind words and a warm, friendly smile . . .
For how else will they know we are thinking of them
If we don't tell them once in awhile?
Author Unknown
Take Time To Be Kind
When Someone does a Kindness
it always seems to me
That's the way God up in heaven
would like us all to be....For when we bring some pleasure
to another human heart,
We have followed in His Footsteps
and we've had a little partIn serving Him who loves us-
for I am very sure it's true
That in serving those around us
We Serve and Please Him, too.~ Author Unknown
Listed Below Are Some Friends Who
Could Use Encouragement
Please Remember Them In Prayer
James 5:16 . . .The effectual fervent prayer of a righteous man availeth much.
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Electronic
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I asked Tara to give me a brief summary of Hope's condition from beginning to present. Here is what she had to say:
12/15/01 Here is our story of Hope. We named Hope because of the hope we have in Him above to answer our prayers and shower us with blessings. Hope was born into our family on July 12, 1999. She has healed our hearts and comforted us from much loss and grief after one still birth and 2 miscarriages. God is so good and we want to give Him the glory for all the good He has blessed us through this journey with Hope and her vision.
She was born with a cataract in her left eye. Typically, babies born with these cataracts have them removed as soon as possible and wear a contact lens instead of having an implant like adults do. The strong or normal eye is patched daily to force development and strength in the weaker eye. Hope had a setback after her first surgery when unusual scar tissue developed, forcing her pupil closed and detaching the retina. It took six hours to repair the retina. She was only 3 months old then and we were told that she could possibly lose her eye. Hope seemed to do fairly well under the circumstances. She has had a total of 5 eye surgeries to date. She had the buckle clipped, later the silicon oil removed, and later injections of helon and steroids.
Presently, we are dealing with "lack of growth issues" which may or may not be related to Hope's eye problems. Her left eye is very small now. It shrunk after all the trauma. The growth of the eye causes the bones around the eye to grow, which could affect some of the functions of the brain - such as growth. Her eye does not make enough fluid to maintain proper health. Instead of having glaucoma (for which there is treatment) Hope has the opposite - low eye pressure. There is no cure or treatment for low eye pressure. We do not patch her good eye anymore because she gets very fussy. She has to wear a shell over the small eye to force the bones to grow. Also, she needs more and more power in a contact lens. There is not a lens available in a high enough power to help Hope. So, she doesn't wear her contact anymore either.
In summary, Hope is not able to see with her left eye right now. There is not a lens available to meet her needs and we can't get one to stay in anyway because her eye is too small. We are trying a magnet over the eye at night, hoping this might stimulate the eye to make some fluid. This will be the key to "saving" her eye, regardless of any possible vision she might have. Last week, the pediatric ophthalmologist told us it was time to give up on any vision, and focus on the cosmetic issues. The retina specialist has a different outlook and we don't see him until sometime in January.
So right now, we don't really know what we should do for Hope. We do solicit prayers for Hope and for our guidance in making decisions. We trust that God will bless Hope with those things she needs most to be the best servant for Him. However, it is heartbreaking as a parent to watch all the she endures. She had hernia repair surgery in August. She probably developed the hernia from being held down, while we take care of her eyes and contacts. She is a very happy little girl, in spite of her difficulties and for that we are thankful! She seems perfect to us and she is loved very much!
?/?/02 Her favorite thing to do is to play Mommy to her baby doll and to cook with the load of play food and kitchen set she has. Play Doh is a big hit with her too. She can be found in the kitchen from time to time, standing on a wad of Play Doh making her own foot print. She likes to sing Bible songs and say the Pledge of Allegiance too. She also likes to body paint herself with Mom's lipsticks. I never knew that a tiny tube of lipstick could cover so many square feet! We have permanent handprints in Berry Wine all the way up our carpeted steps.
In December, we were told by one of Hope's doctors to give up on her vision and to focus on the cosmetic issues. We didn't want to send you an update with that information until we saw Dr. Tawansy in early January. He continues to be the most optimistic doctor yet. Perhaps I should say he is the one that is least willing to give up on Hope. There are 2 major problems for which there are NO available solutions right now. First her eye pressure remains very low - at an unhealthy level. (This is called HYPOTNY. It is the opposite of glaucoma.) Second, Hope is no longer able to wear a contact lens. To put it simply - she is not able to use her left eye at all and sees only with her right eye. Her eye has continued to shrink and has become flat. We are waiting to hear from the contact lens manufacturer to see if they can special design the right size, shape, and power for Hope. Dr. Tawansy is on his way today to LA to talk about getting a study underway to help patients like Hope who have HYPOTNY. He seems very passionate about developing a solution for this condition himself. If he gets a study going, he would probably ask us to let Hope participate in it.
If you would like to continue to remember Hope in your prayers, please pray for her doctor, Dr. Tawansy also. He has put a lot of effort into finding solutions for Hope. I am sure he would appreciate your prayers for guidance and wisdom. We ask for prayers for Dr. Tawansy to have a safe and successful trip. We pray that God can use Hope and us, and even her doctors to make a difference in lives of others.
On a final note, please notice that our e-mail address has changed from Juno to tbeard@truevine.net. We would love to hear from any of our friends and family!
8/16/02 God blessed us in so many ways - all the way to CA and back.....We were very impressed with the ocularist. We met patients from Iran, Italy and Mexico the first day we were at the office. We had no idea this ocularist is world renown. She was able to make a prosthetic eye piece with optics. It also matches her right eye very well. It fits correctly and Hope is able to wear this one 24/7! She could tolerate the other prosthesis only a few hours. When we get a new lens for Hope's glasses, she should have the exact lens power needed.
At present everything is in place for Hope to be able to see. She has been able to perceive only some colors. She cannot name objects yet. As time passes, we hope she regains more useful vision. Thankfully, Hope can see just about anything with her good eye.
We will need to take Hope back to this ocularist yearly to rebuild a new piece. We will continue to see Dr. Tawansy when he travels quarterly to Nashville too. He told us the CHLA already has a research project started which could possible result in a solution for Hope's low eye pressure. The sooner the better for Hope.
We can't thank everyone enough for the many ways you have supported us the past 3 years. Thanks for the continual prayers and encouraging words. We will continue to send updates when there is anything new to report.
08/12/03 It has taken me so much longer to get an update ready to send after our trip to LA. Our trip was limited mostly to visiting the ocularist and Dr. Tawansy. Hope had a new prosthesis made by the end of the week. It seemed to be a fair fit...but it became more uncomfortable after we returned home. We mailed it back to LA, the ocularist made some adjustments but Hope still couldn't tolerate it. Right now we are waiting to receive it again. So, Hope has been without one for over a month now. If we had not LOST the other one while we were there, she would have something to help her.
Regarding the retina.....We are told by a local "specialist" that there was no way Hope would ever have any vision in her left eye and we should forget that. Dr. Tawansy reported her retina seemed stable, similar to last year and to keep on doing what we are doing. He has been able to secure funding for research with could benefit Hope someday. If you would like to help Hope, perhaps just keep this research project and Dr. Tawansy in your prayers.
12/18/99 Bob Spurlin has been out of circulation for 4 1/2 years, when Mayo Clinic diagnosed him with multiple sclerosis. He is bedfast with the chronic progressive variety of MS and has not been able to attend worship services since July of 1996. bob is able to use the computer some and he also writes articles.
5/27/00 This afternoon at 3:30 pm I received a telephone call from my neurologist, Dr. Whitaker, from Birmingham at the UAB Clinic. Following the battery of tests: MRI, EMG, X-ray, blood work-up and etc., Dr. Whitaker said the lesions on the brain and spinal cord did not show up. However, there is a growth on the back of the cervical spine that he diagnosed as Cervical Mylopathy. My local doctor says it is in the same family of demilinazation of the spinal cord. So far the treatment Dr. Whitaker recommends is an experimental drug called Neurton---(Sp), which is to be taken orally for about 2 weeks if the side effects are not intolerable. If this drug does not work, then they recommend Chemotherapy treatments. Dr. Whitaker is concerned about the growth as a tumor, but we will optimistically begin the treatment and pray that there will be positive results. We covet your prayers during this time. Thanks for your encouragement.
Note: Bob has his own website.
http://www.bobspurlin.com/
Please check back for those added to the list and for updates. Thank you!
The suffering need our tender care;
A Care Giver like you to be there.
The suffering long for a hand to hold;
To hear, We Love You, words of gold.Those in distress need a good friend,
That will kindly give, all their help lend.
The loved ones have very much to give;
Showing all graciously how to live.With the spirit in sincere love,
Give with a pure heart as from above.
So reach out and touch someone a new;
For that someone, someday, may be you!
author unknown
Each Life Affects Another
We may not always realize Every time you have
That everything we do, A kind and gentle word to give ...
Effects not only our lives You help someone find beauty
But touches others, too! In the precious life we live.For a little bit of thoughtfulness For happiness brings happiness
That shows someone you care, And loving ways bring love;
Creates a ray of sunshine And Giving is the treasure
For both of you to share. That contentment is made of.Yes, every time you offer
Someone a helping hand ... Amanda Bradley
Every time you show a friend
You care and understand.
