Vision, GI, and Swallow Study

     Thanks for praying us through our big week. The past couple days has been information overload, for sure. Here's a big update, keeping in mind that we have a lot of conversations to have in the next week and things could change a lot from here. We're not certain about our next steps to take, but we are pretty confident about the direction we are moving.

    First off, eye appointment! It was not as discouraging as we anticipated, however it does seem like his vision is not super functional. But there's so much "wait and see". As far as vision goes, the eye doc says that Leo seems to have more peripheral vision and not good central vision--because he doesn't look at you. He also said that Leo has eye movement issues, which is different than vision issues. We can see that the brain damage has affected his muscle coordination and it would appear that it has affected his eye muscles as well. It was clear to the doctor that Leo's eye movements are much slower, also that the right eye is weaker than the left eye (he gets a lazy eye). The eye doctor prescribed an eye patch over the left eye to force the brain to use the right eye. With these eye movement issues, it is unclear as to what his vision is because we usually assess vision with eye movement. But it is clear that he has some vision. He's aware (that's the best word I can think of). We are moving forward with Early Intervention to look at eye consultations or therapy. 

    But weight gain is our priority right now. And on that note: GI. Brad was able to come to this appointment which was a big blessing. The doctor was fairly certain and pretty quick in saying that Leo needs a tube. The issue is that he's just not getting enough. It would seem that eating is taking a lot of energy for him. With a tube, he could get nutrition without using up any energy. The doctor said that a swallow study was necessary in order to see what was safe for Leo to do, then we could move on to figuring out how to proceed with a tube. We spoke with the doctor about the pros and cons of an ng tube vs a g tube and many different scenarios. 

    Bouncing ahead, the swallow study--the next day--showed that Leo can swallow! He's doing it well and it's safe for him to take food by mouth (he did liquid and applesauce). This is huge. It really made me grateful for the ability to suck, swallow, breath. Not a small thing, people. So, he can swallow. This means that with a tube we can--and should--still feed him orally. I believe that we will be looking at getting a tube so that we can feed him orally and whatever he can't take by mouth we finish off with the tube. Other than the swallowing, we spoke with the speech pathologist about Leo's reflux issues, how it affects his eating, and how we can help.

    In the GI appointment we asked the doctor about Leo having this tube for the rest of his life. Yes, that's where our fear takes us. It's not horrible to have a tube, but it's not what we want for him. And there's just a lot to process. But the doctor was encouraging in her answer. It seems very possible that Leo could have this tube to help him catch up, for however long he needs it, but that he could eat in the future. She was very adamant that she can't say for certain what will happen. But we're encouraged that the ability and possibility of eating is there. God knows the future. 

    Where are we at now? The swallow study results will be sent to the GI doctor. She'll call us and discuss our next steps. I have a video visit with our neurologist on Tuesday to discuss all of this stuff. We will probably discuss with our pediatrician as well. And somewhere in there we will have concrete steps to move forward on. Like I said, I believe we'll be getting a tube which means going in for a stay at CHOP. But we are very much in limbo right now--information overload, discussing with doctors, making plans, educating ourselves. These are big decisions and we have a lot of people speaking into this. Prayers for clarity for Brad and me are appreciated. 

    In the midst of this week, God showed himself in very sweet ways. So here's some ways God showed up this week: therapy for me and encouraging to you (hopefully).

    My sister, Tenli, was able to come to the heart appointment, and my sister, Phoebe, was able to come to the swallow study. 

    The heart doctor was Hispanic and spoke with an accent that my sister and I found incredibly comforting. 

    Many friends visited, dropped off meals, sent texts and messages, and prayed during the appointments. We need help and the Lord has provided a good community of support for us. 

    God gave me a song for the week, "I Speak Jesus" which was a part of our sermon at church last Sunday. 

    Leo was so happy this past week. He's a happy boy, in general, but in the midst of hard appointments it was such a sweet encouragement to have a happy baby. 

    He's also been taking the bottle so well this week. 

    When I called my mom in Mexico to tell her about the appointments an old friend was with her and I got to tell her about the appointments too. Feeling support from the Mexico/missionary community is so sweet. 

    Leo fell asleep after the swallow study and Phoebe got him into the car seat ASLEEP. So he was sleeping in the car seat! He did wake up in like 5 minutes, but he didn't freak out right away. 

    I have been able to connect with two moms in particular who have dealt with similar issues as Leo with their own children. 

    Friends came over last minute to hear about the appointments, and also distract us with games for the evening.

    Our main prayer request right now is just for clarity. We have a lot of people speaking into his weight situation. We want to ask the right questions to the right people and educate ourselves. It's not a simple, "This is wrong. Do this." Please pray that Leo continues to take the bottle well now (without the tube) and that he would gain weight. Also for his eyes, God can do miracles! I'm still praying that his eyes will strengthen and come into focus.

    We know we are not the only ones going through stuff. I hope you are encouraged that we serve a good and powerful God. Life isn't about comfort and happiness. In light of eternity, this life will look really short. And, I mean this very sincerely, we only have to take one day at a time. We don't have to handle it all at once. God calls us to be faithful today.