Three Months Home!

Levi has been home three months!!!  In three months he has grown 1.25" and gained 1#.  He can't seem to put on weight as his heart works so hard everything he eats gets burnt right off!!!  But he is shooting up!

In three months we have had ear tubes put in, a heart cath, a  bronchoscopy, 2 echos, an ultrasound, and a cleft lip and palate consult.  Not to mention the visit to the international ad option clinc and dentist.  We have been busy, but Levi has held up like a champ.

So what do we know from all this? Well, we know Levi is on target developmentally except for expressive speech which is expected with the cleft. He actually expresses himself quite well and frequently! ;)

We know that he failed his hearing test due to fluid in his ears, but that is all taken care of now so hopefully when they test his hearing in a month or so he will pass with flying colors! He is obviously feeling better because once the tubes were put in this little guy has been active!!! Of course this has caused more labored breathing.

We know he has a high level of lead in his system that they are monitoring and he will be tested in a month or so to see if it has gone down.

We know he does not have a spleen but they are still running tests to see if he has splenic tissue which would work like a spleen. This would be awesome because he then could stop his daily dose of amoxicillin. Be praying for that!!

We know he has scar tissue on his trachea causing  stenosis but this will be fixed April 11th.  He will have a lip adhesion done at the same time, but the actual lip repair and palate will be put off until after his heart is repaired.  I have to say I am dreading this surgery because I LOVE Levi's wide joyous smile.  I am going to miss it.  I know he will have a new joyous smile but it wont be the same.

We have a confirmed heart diagnosis of a Complete Atrioventricular Canal defect (AVD)with Double Outleft Right Ventricle (DORV) and pulmonary stenosis (PS).  Also known as a complete cardiac cushion defect. China was right on with their diagnosis.

The BEST news we discovered is that our little man will have a 2 ventricle  heart. It looks like this surgery will be June 26th and Levi will be out running with the best of them by the fall.  He already has big plans for soccer and basketball.

What is yet to be done? Well, we need to do the liver spleen scan to determine if there is any splenic tissue.  We need to get our vision tested and hearing re-tested. Lastly, the doctors want to run an upper GI to see if Levi has malrotation  of the bowels.  I guess with all his other midline issues this could be one as well and they want to rule it out. If he would have it it would need to be dealt with as well. Be praying he does not!

We have been in AWE of God's grace and healing! This was the little guy, that when we received his referral, both china and the US told us he would live with a single ventricle heart.  That his left ventricle was too small.  That his pulmonary artery too narrow.  That he would need a heart transplant at some point. That even with treatment, he may have too much damage to his lungs by the time you get him home to help him much.  This was the little boy surgeons in China would not touch because of the severity of his tracheal stenosis.  Levi has had hundreds of prayer warriors praying for him and his healing.  Today, he is the little guy that will have two ventricles.  That has tracheal stenosis, but not to the severity that was seen on the MRIs.  God has big plans for this little peanut. I can't wait to watch them unfold. And, I am so glad Mark and I listened to our hearts and not our heads.  That our children followed willingly, trusting that God was leading.  And what a wonderful thing it has been to watch our children see firsthand our God work! Our God heal!

"Now to Him who is able to do immeasurably more than all we ask or imagine,
according to His power that is at work within us,
to Him be glory in the church and in Christ Jesus throughout all generations,
for ever and ever! Amen."
Ephesians 3: 20-21