First things first: Judah's MRI results came back normal!! Praise the Lord! We can resume his injections tonight at a half dose. Please pray with us that he won't experience any more side effects! My heart is begging God to allow this to be smooth sailing from here on out.
On to the rest of the day... It's only 2:30 but today has already been so full! A whole morning with the Cranio-facial team at Boys Town, and lots of phone calls besides. I'm tired, but I feel really good about everything that's gone on today. Looking back to our clinic visit with the team last year is proof that we've grown. We were so overwhelmed last year, and exhausted! This time we've got 12 months and tons of experience under our belts so we didn't feel overwhelmed at all! We were able to ask educated questions, get some helpful answers, and have a plan in place for the next several months. The biggest discussion/decision that came out of today was that Judah needs to have a "G Button" put in. Judah pulls out his NG tube somewhat regularly, and having to put it back down after his palate repair next month means we risk damaging the repair. Not a worthwhile risk in my book. He's had the NG for 4 months now and there's no end in sight there yet. He only takes about 25% orally. After talking about it with the pediatrician and surgeon on the team, and discussing it between the 2 of us, Jared & I really believe this is the best thing for Judah at this point. I'm nervous about it because it's a more invasive procedure and intervention that we were trying to avoid, and it doesn't come without risk...on the other hand the NG has its own risks, and I can't help but love the idea of just looking at Judah's face 24/7, instead of this tube. In the end the important thing is that Jared & I do our very best to advocate for Judah, and trust God with every decision and detail! We got some good information about Judah's palate repair, as well, so I think we're both feeling more ready for that to happen.
As an aside... While we were at the clinic a family came over to admire Judah. They were there with their 20 yr. old daughter for her very last visit with the team! They asked how old Judah was, and we got to talking about surgeries and "stuff" that goes along with clefting. As we talked I noticed tears streaming down their daughter's face. We talked for several more minutes, but her tears didn't stop. I finally asked her if she was ok. She said she wasn't crying because she was sad or anything. She said, "He's just so beautiful." How can I explain how that one statement from her touched my heart? This young woman on the verge of putting all the surgeries, therapy, and clinics behind her, a woman who has scars of her own, looking at my son just at the beginning of this whole process and seeing the beauty in him. I don't know how else to articulate this. Her tears were beautiful to me.
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