Happy 3 months, Truitt! They say time flies when you’re having fun. Time also flies when you’re running around to different doctor appointments!
We returned last weekend from taking Truitt to yet another hospital for another evaluation and hopefully a clearer diagnosis. The vascular anomalies clinic at Seattle Children’s Hospital was an excellent group of caring and skilled individuals. Our heads are still trying to process everything, and we haven’t come up with the good short answer for what we learned. They did an MRI of the lower half of his body, and everything looked normal, except for the swelling of course. It showed no venous malformations, bone over/under growth, or tissue overgrowth. This is all good news, but it does not tell us why the fluid is collecting or not draining. We met with a geneticist, and after examining Truitt, he felt like the obvious usual gene mutations were not likely factors in his case. We met with 7 different specialists teams, and they will all meet again to discuss Truitt collectively. In that conference they will decide what gene mutations they should test him for, and if there is any further course of action for the time being. For now, the diagnosis is still just Congenital (meaning he had it from birth) Primary (meaning its the way his body is formed, not due to a secondary injury) Lymphedema (swelling from lymphatic fluid). Basically, what we know is that somehow his lymphatic system is not moving the fluid correctly. This could be because of an insufficient number of lymph vessels or nodes, weak lymph vessels, slow working lymph nodes… there is just not a good way to tell in such a little baby. There are a couple of tests they can possibly do when he is older, but the treatment for it will likely still be the same regardless of what they might show. At this point he is not a good candidate for the medication they have seen some results with in lymphedema patients, but that may be revisited later on down the road.
I would have lost heart, unless I had believed That I would see the goodness of the Lord In the land of the living. Psalm 27:13
So where does that leave us? Unless God decides to miraculously heal it, Truitt will manage swelling in his hands and feet for the rest of his life. He should be able walk, and use his feet normally, he will just have an extra piece in his daily routines. The treatment is to do Decongestive Lymphatic Massage– a very specific massage that will help move the fluid into the lymph vessels and aid in pumping it back up to his heart, and compression wrapping– a task very difficult to accomplish on a baby. We have been told that it might take some time and a bit of trial and error to find out what techniques in each of these treatments will work best for him. As he gets bigger, we will have to be very careful of cuts and things to his legs and feet as the skin will be very fragile and will likely take longer to heal. This will mean shoes at all times for him– something no one else in our family really does well. It is also possible that since the lymph system is part of the immune system, that the swelling may increase when his body fights off sickness.
Aside from the swelling in his feet and some in his hands, Truitt is developing normally. He smiles now when you talk to him, and he likes to be held upright and facing out where he can see everything that is going on. He lets you know that he likes being held. A lot. And in true Prentice Baby fashion, is a night-owl. Like a not-got-to-sleep-until-2:00am kind of night-owl. His favorite thing at the moment (besides milk, of course) is watching his brothers play with cars. His eyes get huge and intrigued, and he will actually be content not being held when watching them. Needless to say, the other boys have been allotted a little more play time a few less chores the last few days. 🙂
The idea of a life-long anything is of course daunting. We want to do what is best for Truitt, as well as what is best for our other 4 children. There have been so many instances in the last 3 months of God’s provision is so many ways, long before we knew we even needed it. It goes to show that this has not caught God off-guard. He knew this was coming, and he somehow thinks we are capable of caring for Truitt well since He gave him to us. When I start thinking too far ahead, it is easy to get overwhelmed. What about letting him run barefoot on the beach? Where am I going to find the time to do the massage EVERY DAY? How will we handle it when he becomes self-conscious? How will he handle the summer heat with his legs and feet wrapped in 4 layers? Where will I find shoes to fit his thick feet? And how will we afford special shoes for feet that will be constantly growing? The last 3 months have been a test of my obedience to Christ’s command to not “not worry about tomorrow, for each day has enough trouble of its own.” It is of course our prayer that God would heal his hands and feet completely. We know He is more than capable. He has already brought about a huge amount of healing that is not medically explainable. We truly believe that God who began a good work in Truitt, will be faithful to complete it, (Philippians 1:6) whether the completion is God’s glory through healing, or God’s glory through His grace through this lymphedema. If this swelling is to go away, it will be undeniable that it was the hand of God. Man’s wisdom has said that it will not go away, the symptoms can only be managed. But we also know that God delights in the ‘but God’. Whatever His will, we trust in His goodness, knowing that He loves Truitt even more than we do.
- He was able to be seen at Seattle Children’s Hospital
- Seattle was able to get him in before our live-in baby sitter had to go home
- The swelling fluctuation in his hands has stayed slight
- For the opportunities to show Christ that Truitt’s life has given us
- For complete healing of his hands and feet
- For a quick ‘trial and error’ period in figuring out the best way to manage the swelling
- For wisdom on how to care for Truitt and our other children well
- For grace as we transition out of having a live-in grandma or auntie