He turned one in March. So the newest Maynards will be 1 year olds, just 4 months apart in age. It is such an exciting time for us. The kids keep asking when we can go to China to pick them up. They can't wait to meet them!
I've received a lot of questions about their physical needs. I'm going to give you a brief rundown mainly so you will know how to pray for us. I am also going to refer to them as boy #1 and boy #2. I hate to do that but I still can't share their Chinese names and we (of course) do not have American names for them yet. So that is what I will do for the time being.
Boy #1 - He has spina bifida with tethered cord. Spina bifida is a neural tube birth defect. He was born with an opening in the lower part of his vertebral column because it did not close properly during development in utero. He also had a lipoma at that opening. It is a lump basically. A healthy spinal cord hangs loose in the spinal canal. A tethered cord is connected somewhere at the end or another point in the canal. Last November, when he turned one year old, they did surgery to remove the lipoma and repair the tethered cord. There are a lot of unknowns about his medical condition. We will find things out as we go along, I'm sure. Some good news is he does not show any signs of hydrocephalus (accumulation of fluid in the brain that is common in spina bifida). He also was able to move his legs after the surgery so we have a really good chance of him being ambulatory. Things we might be looking at include: retethering of the cord, braces for his legs, possible wheelchair use for more active locations (theme parks), urinary incontinence (which means he would have to be catheterized for bathroom time), etc.
Boy #2 - He has complex congenital heard disease. His is a form of hypoplastic left heart syndrome (HLHS). A VERY simplistic explanation is he is functioning with half a heart. The other half is there but underdeveloped and not properly performing its job. When he was between 2 and 3 months old he underwent his first open heart surgery. He was transferred to a healing home in another city at that time and has been there every since. He is needing a second surgery very soon. It is called a bidirectional Glenn. A third open heart surgery will be needed around 3-4 years of age. It is called the Fontan. There is a whole lot to explain about all this but I'm still trying to wrap my mind around it well enough to convey the information with clarity. There is also the chance he will need a heart transplant sometime in his 20s or 30s. But time will tell as far as that goes. One blessing to me in his situation is for a short time Brant and I were in a Sunday School class with another couple whose son had a similar diagnosis and underwent the same surgeries. It is nice to have someone to discuss things with if I need it.
Our plan at this point is to have both boys evaluated at Vanderbilt when they get home. I'm hoping that most treatment can take place there.
Prayer requests:
- The boys' health. Right now the most urgent prayer request is the heart of boy #2. He needs the next surgery very soon. Really sooner than we can get to China on a normal timeline. They will do the surgery there, if need be, but we would rather it be done here.
- Pray for favor with USCIS (United States Immigration). We need to get in touch with the immigration officer we are assigned to so we can attempt to get a medical expedite. They have become pretty stingy with issuing these in recent years. We have a letter from a pediatric cardiologist stating it is a life or death matter for him to get here quickly. I am hoping it will carry some weight with them.
- If we do receive the medical expedite that means we travel at least two months sooner. So rather than looking at a travel date of October or November. We would be looking at July or August. Much less time to raise the money. Pray for our fundraising efforts, share our story, our blog and our fundraisers! It DOES make a difference!
- Pray for our family. We are such a mix of exhausted and excited. But sometimes exhaustion takes over. Pray for rest for our bodies and our minds.
Thank you for your support. We feel your prayers as always and love you all!!!
Tax deductible donations can be made here. Or you can give locally at Redstone Federal Credit Union. The account name is Maynard Adoption Fund.
Tax deductible donations can be made here. Or you can give locally at Redstone Federal Credit Union. The account name is Maynard Adoption Fund.
