August 19, 2006
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As many of you know, our precious grand daughter, Lillianna Michele, has had many problems in her very short life.
She has been diagnosed with asthma and arthritis; she has been poked and prodded and hospitalized.
This week she was sent to MCG in Augusta, GA for testing. She and my daughter spent two days there. They learned more in those two days than we have in the last year. Tests (x-ray, blood, urine, ...) won't be back until September 14th (when they will drive the 3 hours back to Augusta), but they already think they know the root cause of Lillie's problems -- Otospondylomegaepiphyseal Dysplasia -- or OSMED, for short.
Her eye exam tests did come back immediately -- extreme nearsightedness -- more so in one eye that the other -- and astigmatism. She was fitted yesterday for glasses, Barbie glasses, purple Barbie glasses, to be exact. These should cut down, perhaps even eliminate, the headaches that cause her to poke at her own head and cry.
It isn't a great diagnosis, and it will mean years of trips to specialists, but it is a diagnosis, and it does allow us to at least know what we are dealing with.
Please keep her and her family in your thoughts (as I know you always do).............
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On a much lighter note, my son got his car back from the paint shop this week. He is showing it off here.
Comments (14)
awww, bless her barbie glasses! your family seems to be so close and supportive. with that behind her she can't fail to thrive despite what may lie ahead. many huggles and thoughts for you all ... :heartbeat:
It sounds similar to what my neighbor across the alley from me has. She's in her late 60's now, although I don't know if they ever had children, she seems to have a fulfilling life. I know her husband is devoted to her, you often see them sitting in the gazebo he built in their yard, or on the swing he built in their front yard, holding hands.
I do hope they can find her some relief for the headaches and I'm sure the arthritis causes her pain many days. I know that it is somewhat of a relief to at least put a name to the condition.
Hugs and prayers to all of you.
As you say, at least she now has a diagnosis and they can treat her accordingly. I will pray for her and all of you. Hugs.
What a sweet, little cutie!
My heart goes out to you and your daughter. Although, I'm sure having a diagnosis is a relief, it's hard to hear at the same time.
I hope the glasses relieve her headaches.
Your son's car looks great! I hope he is enjoying it.
Hugs to you! What a lot to be concerned about!
Thise glasses look so nice! Wow thats a complicated and multifaceted challenge she and you all face!... your family will be strong advocates...
.someone stupid one time told me they thought having a child with significant challenges was something they would be ashamed of and they wanted to know how I dealt with it and I told them I thought special people were entrusted with children who need strong parents and while I was scared and sad for my son I was not ashamed. Looking at that beautiful child I am reminded of that old conversation...you and your family will not find meeting her needs easy but you will also be richly compensated...
I will be keeping herand you in my thoughts..
I was scrolling down... you have a beautiful family:)
:fl02:I will send all the loving energy I can to you and your little sweetheart there. I am truly touched, and ask the Goddess to look upon her. So much love to you :hearts: Blessed Be.
Siajcat
God bless her little heart.
Awwwww such a beautiful little girl! I'd love to just hug her all to pieces...she is so cute! I know how the 'not knowing' is sometimes worse than the diagnosis. I am a long time special needs mom having lost a son last November to muscular dystrophy and his big brother who also inflicted and terminally ill as well, is still with us and will be 23 this spring. My heart goes out to all of you. Very scary times. ((((((big hugs)))))) to all of you! Your son's paint job looks amazing. Our Maaco here is the pits....his car looks great!
:heartbeat:
{hugs} for you and your sweet little girl. I'll be thinking of you both!
Sweetie pie! Her capacity to love is huge, and that radiates out of this photograph. xo
She is so precious. I will keep her in my prayers.
I am glad there is an answer for you. She is so beautiful!! ((hugs)) to you all.
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