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We talked to cardiology yesterday. Alex's heart is essentially the same as it has been. The one doctor we talked to doesn't see how Alex will be able to pull through. We're going to try and talk to a different doctor, one that my wife likes more, in the coming days.

The medicine that they're giving Alex to help his heart function better can't be given indefinitely. Over time, it has it's own side effects. We think that all of Alex's problems are coming from his Trisomy 5 chromosome problem. There's very little known about it... the genetic counselor could only find eight documented case studies ever reported. If his heart problems are due to this, then there's little chance of him getting better.

What we have now is time. I'm fortunate to have a great job where I can take the time that I need. We're getting to hold him a lot. With my dad's real fancy digital camera I took over 1100 pictures the other day of my wife holding him.

There are times like right now when I can have a little smile on my face. There are others when I cry so hard that I shake myself. And there are the times when I just feel nothing. God is the one who can heal my son now. I know that He has a plan, I just don't know what that plan is.

Alex is now eight weeks and one day old. They had to fight to get him through even his first day of life, so that's 57 days so far that God has given to me with my son.

So now I pray that God's plan is to have my son live. I don't see any harm in prayer. And if this is not God's plan, I pray for strength and understanding, for courage and peace.

Thank you everyone, and please keep all of us in your prayers.
 

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I am a Christian American
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I am so sorry you guys are going thru this. We had a 15 week preemie grandson this year. It is very tough. He is doing fine now. I believe that the Lord wants us to ask Him for exactly what we want as long as we are willing to follow His will.
I am asking the Lord to heal your son in His will and make him perfect. Please know that you are not alone, after a while it starts to feel as though you and your family are in this little world of Dr's and hospitals all on your own.
Saying prayers for you and yours. Peace and comfort.
 

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My heart goes out to you and your family and especially your sweet little one.
 

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HomesteadHopefuls
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continued prayers to your little guy and
you and your wife.
his word says to ask, I ask in his name
he make your son healthy, god speed.:angel:
 

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I can't claim to understand what you are going through, but I can continue in prayer for him and for you and your wife. God is with you, and will be as long as you lean on Him. A verse that really helped me through my own hard time was this: Psalm 61:2 " From the ends of the earth will I cry unto Thee. When my heart is overwhelmed, lead me to the Rock that is higher than I." God will be your strength, your rock.
 

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I am so sorry that your son must struggle so soon and so hard. And I am glad you can find beauty and happiness amidst the struggle.

Our youngest was expected to die at birth - they advised us to do nothing as they thought he was completely braindead. Words cannot express how hard it can be to watch your babies suffer and struggle and for us, the parents, to struggle with a less than perfect outcome prediction.

Wishing you moments of peace and love and joy that seem endless. Hugs and snuggles and baby love.

And congrats on the birth of your baby!
 

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My heart is so full right now, and I couldn't hope to write anything more comforting than WIHH, but I am still praying for your precious little son and your wife and you. May you feel God's comfort and healing more than ever.

Jessie
 

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If I need a Shelter
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((((((((HUGS)))))))) and Prayers your way.

big rockpile
 

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wife,mom,taxi driver,cook
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there just are no words to say that are adequate. My prayers are with you and your wife and son. God will be there with you.
 

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Your son and your family are in my thoughts.
 

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joy seeker
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oh, Bruenor, I have written and rewritten this - and I realize that words are so inadequate to offer you comfort in this.

Look to your Faith, Bruenor.

Wrap that precious little baby in a lifetime of your love and cherish each second with him -whether he has 75 years, or 75 heartbeats - cherish your time with him.

May God grant you peace and understanding for whatever lies ahead. And may God fill your eyes, your arms and your heart to overflowing with the sights, the scents, the sounds, the warmth, his lifeforce and the heartsong of little Alex.

Hold him close to your heart. Always in your heart.

And may God keep and comfort you. We are praying for you and for your family and for little Alex.

Amen, amen.

Know all of us are praying for your family and keeping you on the top of our hearts today.

~~
 
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