Last Week

     Compass Care was amazing. It was a really long appointment where a doctor trained in general pediatrics who works mostly with complex kids and a nurse talked through Leo's plan of care. They asked about what issues I have at home, where I need the most support, what needs to change kind of thing. They asked about each specialist he sees, how he's being treated, observed, checked on, etc. And at the end of the appointment I had a to do list and they had a to do list. 

    These people can make appointments for me, reach out to people, answer questions, and more. It feels so good to have doctors familiar with "kids like Leo" available to us. They offer amazing support when it comes to making my schedule, communication, and appointments as easy as they can for me. It was a crazy long, really encouraging appointment. 

    This past Thursday we went to see our pediatrician. This may seem obvious, but answering the developmental milestones questionnaire is not a fun experience. It doesn't bother me as much any more because there simply is no comparison when it comes to Leo and "normal" kids. But it can just bring up some of those "look what my kid can't do" feelings (grief is what it is and grief is not bad). Leo's weight continues to go up. He definitely seems to have growth spurts and not so growth spurts. But his chart is going up and that's a huge praise and amazing experience! Our pediatrician asked to see us back on two months to check Leo's weight so that shows how he considers Leo to be doing.

    I drove from that appointment to a GI check up. Our GI doctor was not so encouraged by Leo's progress. She wants to see him not so far away from the curve, catching up faster. She advised that he be put on a g-j tube which would be able to feed him into his small intestine, bypassing the stomach and decreasing the puking. This option is not new to us but I was caught off guard having just had a really encouraging talk with our pediatrician. I gave a little push back. We discussed why we think his puking is bad again and the best way to give him the calories that he needs to grow but in a way that works with his reflux, tone, puke issue. She worked with me to find a compromise. We will see how he does on this plan for a few weeks. If he is not gaining enough, she wants us to get the j tube.

    The other side of this is. We are looking to get a second opinion and potentially switch GI doctors (but stay in CHOP). This doctor has helped us but we feel confident in our decision to look for another. Compass Care is helping me get switched over. So, we are making some of the changes that she discussed but we are seeking out some other voices before continuing with her plan. I mean no disrespect to this doctor. We are simply moving forward in this way. This will be the first time we have searched out a different doctor. And for the sake of being genuine, this appointment with her was a very stressful one for me. I don't mean to paint it as an easy exchange, but I don't need to complain excessively. I was fairly worked up after this appointment. Just takes time to ride it out and take it before the Lord. One of the worst things about medical stuff is that there's not one clear answer. Oh how I want that so badly.

    From this appointment, we got a last minute virtual appointment with a dietician. Let me tell you this is the support I have been missing! We were supposed to meet earlier this year, but it was a bad day and then we never got rescheduled. So. The day after my very up and down day, I sat down to talk through how Leo's feeding has been going, what the GI doc wanted to switch it to, his weight gain, the curve, and all that good stuff. This woman is AMAZING. God showed himself.

    She said a couple different things that really stood out.

1) From my perspective, Leo is doing really well! Looking at his weight curve, where he's been to where he's at, I'm happy with it. I'm not concerned about him being small or where he's at on the "curve".

2) For something to work for Leo, it was to work for Mom. 

3) I want to get him to whole foods, thicker stuff.

4) I hear you. I will help you communicate with GI. 

5) I think Leo's always going to be a pukey kid. We still need to address it, but eliminating it isn't our goal, making him comfortable is.

    I don't usually cry happy tears, but I was pretty close to it after this call. She also told me that she was going to call our former nutritionist (who works more in Philly) to get her perspective. She talked through my feeding plans and gave her input. I know that the doctors are not responsible for how I feel, but it was wonderful to feel so confident and capable in what I'm doing after talking to this lady. 

    So Thursday and Friday were very all over the place. BUT despite the things to figure out, Leo is gaining weight, such a happy kid, charming his therapists, and always making new friends! We are very grateful for where he's at. 

    Oh! A couple more things. We finally have a meet and greet scheduled with a potential nighttime nurse! We are waiting on three agencies right now to see who can get us someone first. With nighttime nursing I'm not necessarily expecting that it'll be a one person and done thing, but it could be! Also, we are still waiting on equipment, but we are excited for a stroller and stander. Also, Leo has gotten some orthodics for his feet that should be here tomorrow. 

    There's a bunch of praises and prayer requests mixed in all of that. As always, thank you for being with us in the long haul. We appreciate your care of us and Leo. We are so thankful for our little lion man, and also just working through a lot of what life is right now. It's a very crazy ride, but may God get glory!