Back to the Patch

Just a mid-week update as I am too tired and in too much pain to do any housework right now! :) The pain is in my back, not my sinuses for now. I have still been getting a sinus headache everyday at some point, but it goes away and is very tolerable. So, I'm giving thanks for healing of my sinuses albeit it not complete just yet.

Judah and Tucker did so well at Judah's eye appointment on Tuesday morning. They both sat so patiently in the waiting room while I read them a book, and Tucker was so cooperative to sit in the stroller once we made it to the exam room, watching his brother get his exam. Judah did so well for his exam that Dr. Abrams and Jana, her assistant, were able to try out a few new tests on him. He let them put two different kinds of glasses on his eyes (not at the same time, of course) in addition to reading the letter chart twice, once for each doctor. He allowed them to put tape over his lenses to test out his vision in each eye individually and even let the doctor put on her funny head mask/lamp, holding up a thick lens to Judah's eye to see way into the back of his eye to his optic nerve. He was a champ even with her manually lifting his eye lids and taking a while to see what she needed to see. We were both grateful for the good look he gave her as it indicated that his optic nerves are both in great condition, looking healthier than they had the last two visits! Praise God!

It was obvious throughout different parts of the exam, however, that Judah's weak eye is only growing moreso. It was pretty sad to see him try to look around the tape covering his strong eye at the letter chart when it came time to see the letters with only his weak eye. And, he got most of the letters wrong with that eye, too. So, Dr. Abrams once again prescribed using an eye patch for 2 hours a day until further notice to try to strengthen Judah's weak eye.

The first day I put the patch on his eye, Judah cried for at least 20 minutes until the Holy Spirit reminded me I could pray. We prayed together, and Judah seemed to calm down after that. Putting him infront of a video probably helped a bit as well. The second day, it looked like it was going to be the same routine. Tucker helped me pray for Judah this time, and we once again marched down to our basement to watch a video. So, this may be our new after nap routine: Judah gets his eye patch (sticker or bandaid as the boys like to call it); we pray, and they go downstairs to watch a video.

Judah is incredibly resilient, and I am constantly amazed by my little man's ability and resolve to cooperate with all that he's put through. I truly believe it is already an evidence of God's grace and mercy on his life. It can be difficult as his momma to put him through so much, but I'm learning right along with him that God is good and has our best in mind even in the most trying circumstances. There are many days, though, that it is about choosing this mindset as it most certainly does not come naturally to our flesh to think that way.

With that said, let me invite you into the latest with Judah and that involves his growth. I've mentioned his growth before in these posts, but I'm bringing it up again because we recently had him measured again and saw that he is still dropping off his growth curve. It was discouraging at best, but again an opportunity to pray, to ask others to pray and to trust God. That may sound so cliche, but it really is how we are being graciously led by the Lord through Judah's circumstances.

We are going to be following up with Judah's neurologist about this who will most likely recommend we begin testing him for growth hormone deficiency. This seems to be a trend that researchers are finding among Sturge Weber patients and so, Judah's risks are higher. To my knowledge the tests involve some bloodwork, an x-ray of his hand and then a more invasive test where they try to artificially stimulate the pituitary gland to release growth hormone and watch to see what it does. How they do this exactly, I am not sure. I just know that it means more appointments, needles, time spent with "white coats", waiting for results and potentially, a daily shot of growth hormone for Judah if the tests prove that he does indeed have a deficiency.

Please be praying that Judah will grow on his own, that there may not even be a need to begin testing at all. Pray that God will move circumstantially on behalf of my little man (no pun intended!). Pray that if God knows it to be better for Judah to undergo testing and even receive those daily shots of growth hormone, that He will also provide grace to Judah and to us as we adjust our expectations again regarding all that Judah's SWS will mean in our daily lives.

This issue of his growth will be an ongoing prayer request for the next couple months as I imagine it will take a good while before we can pursue testing and/or treatment given all the changes that are about to occur in our lives (a.k.a. BABY #3). I will be sure to keep you informed to any appointments or developments regarding his growth.

Finally, I have my next OB appointment tomorrow. I will let you know how that turns out, but I'm expecting everything to be fine as there has not been any less movement on the baby's part and no impressive contractions to speak of.