Clarity

I wrote this on Saturday:  

  Leo barely gained weight in the last week. We are waiting to make the decision again. 

Writing it out, I see it so clearly. But it's anything but clear. How hard to I fight for him to not have the tube, and how much is my fighting simply because I can't accept it? Writing that is so uncomfortable to admit to people. But that's where we're at in our house.

    Our pediatrician very respectfully communicated that Leo's medical team is in agreement that he needs a feeding tube. And that we have also said we'll wait until x to see if something changes for a while. We've been waiting and we keep pushing it off. 

    But it is so hard to make these decisions. 

    Our plan moving forward is this. We will check his weight on the 27th. Until then we will continue to feed him as we have, getting him used to larger amounts in a bottle at a time. If we do move forward with the feeding tube, we won't schedule it until January. We might call in December to schedule it, but we won't do the surgery until after the new year. 

    I don't know what we'll do if he gains weight well on the 27th. The hope that he won't need it is so strong. But, please can you pray for clarity? 

    In other news, we feel like we have had so much to celebrate with Leo recently!

    He is doing so well in therapy recently. I forget if I've mentioned this already but our physical therapist has mentioned multiple times that his vision seems to be getting better. He seems to be more aware. He is reaching for toys--in a very uncoordinated and Leo way. In OT yesterday, he was sitting up, supported but also supporting himself some a moving his head around. He continues to greet us with the BIGGEST smiles. We just love his expressiveness. His noises evolve as well. Our most recent discovery is that he loves the kiss noise. Often when he hears it he will erupt in smiles. It's the sweetest thing when Mommy and Daddy kiss and Leo gets unbelievably happy. 

    When I compare Leo to other kids, I'm sad. When I look at just Leo, I'm happy. It's a process. And what a way to be learning that none of us should compare ourselves to each other. 

It's crazy how much can change in two days.

    So. Now Leo has a cold. He's been congested and tired which has affected his eating. Brad and I have both felt that this is a confirmation from the Lord in moving forward with the tube. It's a good thing to have. We're realizing that with the tube things feel a lot more real. It hits us that Leo's different than other kids, ya know? And it's scary because we don't know the future and how much he'll need the tube. At this point the doctors are not saying that he will need the tube forever. It's a wait and see. We are planning on still feeding him orally and using the tube to supplement.

    Today I called the scheduler. She has to call me back. We are hoping to get in for surgery in the beginning of January. Lord willing, it will be scheduled soon. 

    Please pray that Leo will get better soon. Pray that he will gain weight. Even if we see weight gain on the 27th we'll still do the tube. But we would love for him to gain again. Please pray for the transition to a feeding tube, hospital stay, surgery, recovery, more appointments, time in Philly. And please pray for us as there are different things that require a lot of processing. 

    We are so grateful that the Lord gave us Leo and that he is here with us. We pray for the grace and capability to care for him well. Thank you so much for supporting us! Leo is 9 months old! Crazy that all this started 9 months ago.