Truitt is 2 months old today! He weighed in at 8lbs 14oz, and is 21″ long! And we thinks he’s in the middle of a growth spurt because he is eating ALL THE TIME.
After weeks and weeks of his swelling improving, it took a turn and the swelling has increased in his feet. The left foot is much worse than the right foot, and is almost as large as it was a birth. Even though swelling, it had retained good coloring until the last couple days when it began to darken and discolor. We still do not know what is the cause of the swelling and discoloration. One doctor had an “I think its this” diagnosis, but as it is continuing to swell, it is unlikely that that diagnosis is correct. If we don’t know what is causing it, we don’t know how to treat it, and even if it were to go away, we don’t know if it might come back. We have spent the last couple of days getting all of his records, images, photos, etc together and sending them off to 3 different hospitals across the country that have vascular anomaly specialists. They have each agreed to look over his case and let us know whether or not they think they can help and what the next step would be.
The possible diagnosis we received (capillary malformation; excess capillaries) was encouraging because those will usually resolve themselves given time. After doing some more research on our own, and seeing the change with the swelling increasing again, it looks like it is some other form of a vascular malformation. Many of the possibilities have a much bleaker sounding prognosis. We are praying for a quick response from each of the hospitals, for wisdom for the doctors to know what it is and how to treat it, and for wisdom to know which hospital to utilize.
Part of the treatment for the swelling in his feet is to keep them elevated. This is getting more and more difficult the bigger he gets. He can now scoot himself backwards so that his feet are no longer on the blanket roll under his feet in his bed, and his favorite spot is upright on your shoulder. The fact that he likes to be upright tells us that it doesn’t hurt him to be vertical, but it does allow the flood to just flow straight down and pool.
Other than his hands and feet, Truitt is doing amazingly well! All of his other developmental markers are normal. We are still working on getting him to nurse well. He will nurse, he’s just not big enough to do it efficiently and get satisfied from nursing only. So we are still nursing and bottle feeding, and doing some stretches with his mouth to help it grow and relax so he can nurse well. This is just part of the catch-up he has to do from being premature.
You also helping together in prayer for us, that thanks may be given by many persons on our behalf for the gift granted to us through many.
2 Corinthians 1:11
We are so grateful for the gift of your prayers. Truitt being home is truly a ‘gift granted to us through many’, and someday we believe you will be able to ‘give thanks on our behalf’ for his hands and feet have being made whole as well.
- 3 Different hospitals have agreed to review his case
- He is willing to nurse
- His hands are continuing to improve
- He is still able to move his feet and toes
- His PCP was very supportive of getting him care out of state
- That the hospitals will review his case quickly
- For wisdom for the doctors to make correct diagnosis and treatment plan
- For wisdom to know which hospital to utilize
- That the swelling and discoloration in hands and feet would resolve completely
- For comfort for his left foot that is especially swollen