Overload

     Once again, my brain is scattered, but we would really appreciate prayer and would love to tell you what's up here.

    The summary: we had two appointments this week, cerebral palsy clinic and the post op surgery check in about his feeding tube site. We are also preparing to be admitted to CHOP in King of Prussia tomorrow because of Leo's weight.

    So, Philly trips. The cerebral palsy clinic was AMAZING! It was so cool to talk to people who were very familiar with kids like Leo. In other appointments it has felt like something was missing. Meaning, we can talk about ways to help reflux but Leo has muscle tone and movement issues that make their suggestions not doable. So, it was just really good to talk to people who were like, "Yeah, nope. That sort of thing won't work for Leo." We spoke with a physical therapist, occupational therapist, muscle tone doctor, speech therapist, social worker, and got an xray of Leo's hips done. Sidenote, they all mentioned how adorable and sweet Leo was. I don't care if they say that about all the kids, I love it. 

    Brad and I really appreciated how the muscle tone doctor's time went (also I'm very certain that's not what he goes by, but I don't know how to refer to him lol). He laid Leo on the table and watched him move for about 15 minutes. He moved him into different positions. He pulled and pushed his limbs. He just watched and felt how Leo moved and it was amazing. Basically, he told us that Leo has quadriplegic cerebral palsy. His hips look good right now, but we need to help stretch them. And Leo's range of motion is good right now. We will follow up with him in six months. As Leo grows his bones and muscles could get worse or change because of how his muscles work and how his brain tells them to grow. I know I've said this before but that's a real layman's terms way to explain it. Brad understood better. 

    The therapists that we talked to were very encouraging. They offered suggestions and gave referrals for equipment that would help Leo. 

    His post op visit went really well, too. We have been worried about the site being sensitive and not healing well. He's got some tissue that is bothering it but it's not infected. The tissue was treated. The button was changed out. Equipment was sorted out and we were good to go!

    So those appointments and trips went really well. Oh, also in there, Leo gained weight really well on Tuesday but his weight was down on Wednesday. This now leads to our next thing. The GI doc called me on Thursday about wanting Leo to be admitted to the hospital. From her perspective (and the nutritionists) even his good spurts of weight gain have not been good enough, like as much as they are looking for. She wants him to be admitted to the hospital so that he can get a couple of tests done as well as be monitored and play around with what formula he's on and such. She said that a priority for her is figuring out why Leo pukes the way that he does. By the way, those pukes have been a lot better than they were a month ago. (yay God and thank you for your prayers)

    After many calls for second opinions and different perspectives, Brad and I decided to move forward with the hospital stay. The main reason is that getting the tests done will happen in a timely manner with him staying in the hospital. They want to do an upper GI test to look for any obstructions or such in his digestive system. She also wants another swallow study done as well as something to look at how well his stomach is emptying. 

    The part that we are much more hesitant about is the "monitoring" his feeds. We feel that he's not going to eat as well in the hospital: new environment, not routine, more and different stimulation, tests going on, whatever. And feeding him is not a simple thing. But we are trusting God that it's worth a try and that he knows the outcome. 

    Prayers appreciated for this hospital stay. We are going down to CHOP King of Prussia tomorrow. We have seen the Lord provide so many things already. Brad has a place to stay and work remotely from. We know that the hospital room will be just us (thankful for no roommates). Please pray for strength and patience. It's hard to be in the hospital. Nights aren't restful. Communicating with doctors and nurses takes energy. Knowing what Leo's needs are without taking on the pressure of keeping him happy all the time is hard. I know that there will be times where Leo is upset and I can't "fix it" and I need to trust the Lord with Leo's care. Prayer for Brad and I to communicate well and know how to support each other. Also, figuring out food. 

    To be honest, Brad and I are not very hopeful about getting answers. It doesn't feel that way. We have been dealing with these weight and eating issues for so long that it's hard to think that they could actually tell us how to fix it. I realize that's negative and critical. We truly appreciate and respect the medical professionals helping us. You could just pray for our attitudes :). And the truth is we might not get answers. So we're just trying to hold this visit open in surrender to God. 

       Thanks for being with us. Oh! We have heard 5 days to a week mentioned as far as the length of our stay, but we really have no idea. Prayers appreciated for clarity and plans for that.