Movement Specialist (and genetics)

     We went to Philly on Tuesday and it was such a good day. My friend, Julie, came with me to help with bags, the pump and g tube, Leo, and all that jazz. This appointment was to see a neurologist who is a movement specialist. She will be the main one dictating Leo's medicine related to movement.

    First off, apparently she was already been a part of making decisions regarding Leo. She has talked with his neurologist as well as the rehab doctor who saw him in-patient and originally prescribed the gabapentin. It was so cool that she was so familiar with Leo and his history before even meeting us. She also kind of lead the meeting with these things:

1) I don't want him to be on so much medicine that he's sedated or "not there"

2) I will not pile medicines on. We'll do as few as possible. 

3) I will only add one thing at a time so we know what it's doing.

Brad and I are so thankful for that approach.

    Right now, the only thing she did was up his gabapentin a little bit. She talked with me about movement, muscle tone, muscle tightness, and all that. She also examined him. I cannot spit it all back. My mind can get very fogged and it was very much information overload. But, from what I understand, muscle tightness and tone will change has Leo develops. There's no one way that it's all going to go. So, as we see him develop, his movements and muscle tone will be assessed to determine what his needs are and then what medicine can help him. There's not an order that they do medicines for movement, if that makes sense. So, right now, the medicine he is on is helping him, not affecting how present he is, and we have room to go up. 

  That was basically it as far as movement. We will now take turns seeing this doctor and our neurologist every 3 months. No need to double up on the appointments. 

    The other part of this appointment that I did not realize was genetics. We had two tests done and had never heard the results so a lady came in to explain them to us (per the request of our neurologist). Now, this lady talked very fast and gave so much information. Julie can attest, we were both overwhelmed when she walked out. So this is going to be very brief. 

    So they are doing some genetic testing to see if they can find a cause for why Leo came out not breathing, what brought all of this about. It could potentially offer some insight into future pregnancies for us as well. With these first two tests, they didn't find anything concerning. There were 4 "things" that were different than "normal" but they didn't think that is enough to cause anything. They are doing a more extensive study now, one that looks at all 400 (ish) of his genes. They also swabbed me and we will send a swab in for Brad so they can look at our genes as well. 

    Genetics are crazy, but they really can't guarantee anything. It's hard for Brad and I to believe that they could actually find an answer. They could find something, nothing, or something that's different but doesn't provide enough data to know if it affected what they are looking for. I don't know if all of that makes sense, but maybe it conveys just how I'm understanding it. 

    Please pray for God's hand over the genetic testing and for answers if that's what he wants for us. I will say that the thought of future pregnancies is very scary, so if this could offer insight that would be so comforting. 

    Leo was chill and mostly happy for the appointment and the trip. Having the gtube was a blessing because I could hook it up and then walk to the train station so we didn't need to take extra time for feeding. He didn't puke either! Also Julie held him during the appointment so I could focus more on what the docs were saying. Leo was pretty pooped and fell asleep as we waited for the train.

    In other news, he has a new tooth and I believe two others that have almost broken through the gum. We are still using the pump to feed him a lot which feels discouraging, but I'm trying to focus on the "just get it in him and we'll figure out the puke later". Bottles are harder right now and that brings the worry of will he lose eating by mouth. But he's still taking some bottle by mouth as well as puree. But if you could just pray over all of that situation. He has maintained and gained slightly over the last couple weeks. So not great, but I keep thinking "he's allowed to have bad days," and I really think teething is throwing him off. Also just pray over my communication with doctors and all of our decision making. He is doing well, he's just on the pump a lot which scares me.

    I need to go wake him up. Thank you for reading our update. We are headed to Philly tomorrow for his eye appointment. It's going to be long and my mom is coming with me!