May 19, 2010

Finally ready to share the news ... prepare yourself.

WARNING:  This is heavy duty stuff.

MY FEELING:  We're hopeful God will intervene with a miracle. 

HISTORY:  When we got Manny, he was EXTREMELY hypotonic.  Several tests had come back "negative" for genetic testing.  Since he's been home with us in 7 weeks, we have seen amazing strides forward in his skills.  He couldn't move his head 1/4 inch in any direction.  And he can now hold his head up for about 2 minutes at a time. He has some new arm movement and some leg movement - all new.  In addition, he is sounding louder ... in talking, coughing, crying. 

We knew that there was a major condition of some type and due to his early months, it was compounded by not getting the proper services and therapies. 

But we had a lot of hope that he was progressing in a lot of areas. 

At the same time, we know he is losing some skills.  For example, his birthmother bottle fed him until 8 months when it became very difficult and he was aspirating all the time.  This is why he had to be put on a gtube.  He's also losing the skill to swallow even his saliva.  Since we've been in the hospital, I'm noticing that his tongue isn't working with the rest of his mouth.  Like he wants to suck a pacifier but his tongue is thrusting it out and frustrating himself. 

THE DIAGNOSIS:  The brain MRI showed a degenerative white matter brain disease, Leukodystrophy. White matter controls some involuntary reflexes like swallowing and breathing.  (So pretty important.)   The white matter is in the front, middle and back of the brain.  And this disease affects one, then the next.  His is already completely in all three areas and beyond.  So he is considered "end stage". 

Children with this disease typically die of respiratory failure.  Their muscles in the lungs just give out and unless you put them on a ventilator, they often die very young.  (The blood tests have been sent out to find out which specific subtype this is.)

THE PROGNOSIS:  Considering how far his is already advanced and how quickly, yesterday, the neurologist said his best guess is that he won't make it 6 months.  Today he told me he might not make it to his first birthday (June 26).  Today we did the EEG which should help show if we're talking closer to the 1 month or 6 month. 

THE REALITY:  We know God is "Mighty to Save" (a song that's brought great comfort).  And we know God is Completely capable of healing him in an instant!!  We also know that sometimes He says "No".  And we have to be prepared for either reality.  So they are going to send hospice to talk to us about their services.  Social services is going to bring in a DNR form for us to consider. 

THE REAL STORY:  I'm grieving hard.  I knew he wasn't likely to live long.  But I feel cheated in the months and years we thought we were going to have with him.  So I have to figure out a way to make every day count.  That he feels loved to the core of his being.


  1. My heart breaks for the grief you must feel, but I'm so happy to be able to consider you my friend. What an honor to know someone who is so completely selfless that she is willing to step out and give so much love to someone so helpless. No matter what God's plan, He has made you an instrument of His love. Because of you, Manny has become important to so many others. Manny matters to all of us. Because of God's grace . . .

  2. Beth, My thoughts and prayers are with you. We too are in a decision on a little guy(for adoption) that is very special like Manny and you are living our worst fear. But you are living it with much grace and faith. A mothers love is strong and powerful but a mothers grief is sometimes unbearable. Most of us have not experienced such a devastating diagnosis. Most of us have never had to grieve for our childs life, and so soon after they have come into the world and our lives. I wish I had the right words to take all of your pain away but I know that is impossible. Just know that I will be praying for all of you and anytime you need a shoulder you have mine. Bless all of you.

  3. Beth, I am praying! Our God is Mighty to Save...and I am praying for Manny to live. I realize that sometimes God says no. But he has NOT said no yet...I am praying for a miracle.
    With love and prayers for your ENTIRE family.

  4. God bless you, and your family, Beth. What a hard road lays before you--fraught with difficult decisions and heartache. And yet here you are, trusting God and loving this baby. Many prayers for you to have strength and feel loved!


  5. It hurts to see you aching and grieving, dear friend. I'm so sorry. I'm honored to know you, a real-life portrayal of Jesus' hands and heart.

  6. I don't have any words to give you. I just want you to know you are not alone. I'll pray for you and cry with you. I'm very sure others will too. Beth, we have never met, but we are sisters in Christ and we love adopted kids. I'm so sorry. I am here and I am praying.

  7. I ditto what everyone has said. I know you will stand before your Maker and he will look at you with loving eyes and say, "You served me well." Love you!

  8. Our family is praying for you! He will know your love - no matter how long you get to give it to him! He has a family. That is what is important.

    Blessings and love,

    Stever Family

  9. I'm so very sorry for this news and will be praying for a miracle for your sweet boy.....

  10. I'm so sorry Beth.My prayers and thoughts are with you and your family, and of course sweet little Manny



  11. Manny couldn't ask for a better mom to spend his life with! Bless you and Manny and your other beautiful children....and never give up hope!

  12. Blessings to you, Beth. I work for a wonderful Hospice in Altamonte Springs, FL and know how tremendously helpful they can be. You and sweet Manny are held close in prayer.

  13. Beth,

    Praying that God does a miricle and heals Manny, but also understanding he might not and for your whole family. Also praying for comfort for all of you.

  14. Beth, we are praying for Manny, your family, and you. May you find comfort and perhaps a miracle!

  15. God never says No to healing. Lay hands on Manny and command the sickness (use the name if it has one) to leave his body in the name of Jesus. And keep going until you see it happen. We have the authority to kick this sickness out of his body - Jesus gave it to us. Blessings x