We recently received the blessing/donation of diapers from a precious reader! Thank You so much! You know who you are! And her cousin who lived many miles away delivered them near to us! Thank You! God Bless you all! :o)
We were told our precious daughter Mercy had a vascular malformation. This is true. We were told it was at the base of her spine where she sat- this is NOT true. At the base of her spine is an abrasion- due to who knows what it has grown- looks mean and the surgeon can remove it and it should not return. Just something odd she has- no explanation? Well no explanation we know because she came here at age 5 with it.
The vascular malformation is true. It is in her brain.
The Hematologist connected the dots and found out that all information sent to us contained huge errors. We knew info was lacking- but we are not Drs. It took a Dr to piece it all back together for us. Thank God she did! Sadly it's so much more complicated than any parent could imagine.
Here is a small bit of information on her vascular malformation-
"Some AVMs cause no symptoms at all and may never be discovered, but most become symptomatic at some point during the patient's life. Some AVMs can cause seizures or persistent headaches, sometimes as painful as migraines. Other symptoms depend largely on the location of the malformation and can include weakness or paralysis on one side of the body, trouble speaking, loss of coordination, numbness, tingling or pain. If the AVM is large or is blocking the flow of cerebrospinal fluid, severe headaches due to hydrocephalus can develop."
THIS is why she cries, THIS is why she screams, THIS is why she hits her head, slaps her face, throws herself into inconsolable melt downs refusing to be touched and cannot sleep without hitting her head on something because IT HURTS! This is why she refuses to be held when she is in pain.
I called our adoption Social Worker who cried with me. There has been no one else here to care about her other than our family, and her/our adoption workers. Recently added to her caring list are our new friends/family in the Sotos Syndrome Association. Few choose to walk along side us as we LOVE Mercy.
The Dr now says her developmental progress is iffy- we don't care. She most likely will not "talk"- we don't care. She could eventually lose all skills, or hemorrhage to death. It's all unknown. We won't worry about what hasn't happened or may not happen. All we care about is that we get a medication NOW to stop the pain that causes her to hurt herself. The Hematologist could only suggest Tylenol. We are waiting for an emergency referral for a neurologist. We had to cancel the Vascular specialist. But the VSM specialist will only write us a care plan, tell us more bad and good (hopefully) news- there is no cure/treatment. The neurologist should be our answer to pain management.
Can you believe this has been overlooked through 5 families in 5 years until us? Her birth family was told some of this. Why didn't they ask for more information? And then was it too much for them to let her next homes know this?
The "experts" we had spoken to from her past felt that a psychiatrist was needed because her behavior was so over the top? (a behavior management plan for your head hurting??) This just breaks my heart! Look what she's tried to do to tell everyone about her pain- all this time!!! and "experts" treated her with things like Risperidone? Which our new pediatrician also wanted, she wanted us to get a psych for her to continue the Behavior Management, but I said let's see what happens if she can sleep first! Let's see what her behavior is like if she can ever sleep! And now I see why sleep is so hard. Already Tylenol has helped her pain in ways that prove- it's pain NOT behavior!
We have started a pain journal to help.
Maybe this is why her Sotos growth has also "slowed"? Maybe this is why her hair is so thin?
This brings up a whole NEW ball game.
The Lord brought her to us, because we are the family that will not give up- even if others doubt us or criticize us. We are the family who truly cares about her. And now with the 37 years of parenting experience, learned from 20 blessings before her- we finally see a better picture of God's plan.
Yes, it has been very hard. We even questioned ourselves, our sanity. We questioned God. We had fear of failure. We were afraid. We had doubt. It has been 4 long months of questions we were afraid to ask. Because how could we explain it? How would we explain behavior that others had already identified and labeled as something else? No one was listening- no one believed us.
Now we are free to say- THIS is why! We knew it was NOT behavior! We Praise God, only He could help us. He answered our fears, our doubts, our prayers.
We are FREE! To move forward. And Mercy is responding beautifully- as we always knew she could! Her future looks bright! God is so good!
Noah does NOT have Kabuki Syndrome! He has exactly what I wrote about here- http://theroaddownhome.blogspot.com/2012/10/fetal-alcohol-and-down-syndrome.html
And yet this boy IS LOVE!
And that is only a peek into our lives in the last 6 weeks!
LOVE and ((((HUGS))) to you ALL as we celebrate Christ's birth!