Before I dive into Judah's clinic visit from the 11th, I have a prayer request. Judah has a tummy bug today. My prayer is that he'll be over this by tomorrow morning, because he has a complete urological work up at Children's. We'll be there from 10:40 A.M. until sometime after 3. We'll be in Radiology twice for different tests, Nuclear Medicine, and then with the Urologist. It won't be a fun day for Judah, but it's all necessary to monitor his overall urological health, which also effects his kidneys. Pray that Judah will wake up feeling 100% tomorrow...otherwise, it will be a long time before this can all be coordinated again.
Judah had a good morning at Boys Town this year. It was also our shortest clinic visit ever! He was scheduled to see 8 specialists, but we only had to see 6:) Overall, he's doing well. The speech therapist was very encouraging about the sounds he's making; however, it's impossible to know what kind of sounds to expect from Judah post-palate repair, because his development is all over the chart. He doesn't have a specific delay age...like, he's at the developmental stage of a 12 month old. He hits marks from infant all the way to 2 1/2. So, rather than work off of expectations, we'll just keep doing what we're doing, always challenging him and trying to push him farther. She also gave us some very practical ways to help Judah learn new sounds and words - things we can do each day. The hard part of the morning came when we saw the plastic surgeon (not the one who does Judah's surgeries, but an associate). Judah's repair is open. As soon as I saw it I started to cry. The information we got from the surgeon and the speech therapist regarding the opening was encouraging, but still. At this point we don't know if the opening goes all the way through to the nasal cavity, or if that cavity is still closed. That makes a big difference in whether or not the opening will need to be repaired at all. I won't know anything for sure until we see our surgeon again. The healing process is still not finished, but I don't expect any miracles. That sounds...hopeless. I'm hopeful that his nasal cavity is closed and he won't need another repair. OR, if it's open, that he won't need another repair until they do the bone graft at age 7 or 8. We'll know more after Thanksgiving.
I would really appreciate prayer for my heart in this. It's so hard to be just 4 short weeks past surgery, and have to say, "OK, Lord, have Your way." I don't want Him to have His way, because right now I don't like it. I believe that His love for Judah is so great - unfathomable - that His plan is perfect, that His way is best. I really do believe that. I'm just having a hard time making the heart connection right now. It's hard to make the conscious choice to come to Him with my hands held open, surrendering my desires and Judah, when I don't feel like it. Buuut...I think a lot of my growth in Christ happens when I respond to Him even when I don't feel like it. Especially when I don't feel like it. *sigh*
We saw the UNMC eye specialist this last Tuesday. I like him. He reminds me of my family practice dr. in WI, because he took the time to explain details and even draw diagrams:) I got a good education from them both! I now understand the congenital condition Judah has in his eye muscles. During his development in utero, he developed mostly scar tissue where muscle should be. That explains why his muscles don't work correctly, and why he's a great candidate for surgery. Actually, if he doesn't get the repair, he could have vision problems in the future. There are risks - there are always risks - but based on the information we have from his ophthalmologist & this surgeon, and both of their recommendations, we're going to do the surgery. He doesn't operate at Children's (I'm anxious about that), so we can't combine it with the tube replacement. Both of these procedures are quick and done on an out-patient basis, so I guess that's good. I'm not crazy about all this. So many times under anesthesia. Last night I was thinking about all the surgeries, minor and major, and realized that we don't have an end in sight. There's always something, just down the road a bit.
When I think back to being pregnant with Judah, I remember asking God to heal him only if that brought Him the most glory. But now I wonder, why? Why did He choose Judah to glorify Him in this way? Why not just bring him Home before he ever had to experience one yucky thing in his life? What is it about a sick child that brings Him so much glory? Doesn't it bring Him at least an equal amount of pain to watch His child suffer? I just don't understand Him in His sovereignty. I'm overwhelmed when I think that He finds me worthy of His refinement, worthy of bringing Him glory; but I struggle when I have to come to grips with the fact that Judah is just a child. He doesn't understand any of the things that I do about God, so Jared and I are his only lifelines. And we're not enough. I don't know if I'm even making sense anymore. These are just things I wrestle with...somewhat regularly.
There is so much freedom in surrender...but it's impossible to surrender without the work of Christ in me. I want to cling to Judah and what I understand to be fair and right. Christ's surrender in me says to rest in His sovereignty. Rest.
So I say...
GOD. IS. GOOD.
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