Leo, Our Little Lion Man

    So we're almost at the end of Leo's birthday month, but I still wanted to talk about his birthday. This one felt a lot different from last year's. Well, I'm not sure if it did for Leo, but it did for Brad and me.      His first birthday had a lot more grief and anticipation. I remember walking through the day in my head, "Ok, this is when we went into the hospital. This is when I started pushing." I was so aware of the timeline the whole day. It's a weird feeling to come closer to the single moment that changed your life so drastically. We invited our family over and celebrated and also had time for sharing about Leo's first year of life and the different experiences people had of the day Leo was born. There was a lot of grief.      This year, it was 10 days before his birthday and we hadn't planned anything. We weren't dreading it. We truly wanted to celebrate, and didn't feel the need to revisit all of the pain from the day he was bor...

    It communicates so much to us when you hold Leo. I think the basics of what it communicates is that I'm not alone--we're not alone--and you care for us even though there are different, weird, uncomfortable, scary things about Leo's special needs. But it communicates all of that and more on a deep level.     What goes on in my head when someone is holding Leo:      "Oh, he's unhappy. He's arching and pushing. Are they ok? Is he ok? Should I say something to help them help him stop arching? I don't know if what I say will even help. Will it come across as controlling, untrusting, too much? Are they frustrated? Do they want me to take him back? I want them to feel trusted by me with my kid. I don't want them to feel burdened by him. I want to help because he's not easy to hold. It takes time and experience to get used to. Ok, don't keep glancing over. But are they ok?"     My fears are to be a hovering and controlling mother and friend. My...

      We went to see the Bone Health Clinic. We were referred to them after Leo fractured a rib. It was a very encouraging appointment from my perspective.      The doctor ordered some blood work and a urine test for Leo so that he could look at Leo's growth hormones and how his body absorbs calcium and vitamin d. Nothing about Leo struck him as urgent and off. He gave various reasons for why we need to be aware of bone health in kids like Leo, what are the concerns, and future treatment. It's basically monitoring that is required. It very much seemed like this is part of the deal. Not that Leo is super fragile, but this is something that can happen. His movements and development are not natural so this means that growing can pose different problems.      I was kind of encouraged by something the doctor said about Leo's muscles. He felt how strong Leo is--if you have held him, you know what I'm talking about. And the doctor said that Leo's st...

      This one caught us off guard, and it’s been an interesting process.  Our nighttime nurse...left. Our last night with her was the 17th. There was miscommunication between me and the agency so I'm not exactly sure when she gave her notice, but we found on the morning of a Monday that she wasn't coming that night.  Honestly, though, it was God's timing because I opened the email right at the beginning of my virtual counseling session. It was incredibly healthy to talk through those feelings and our new situation with her. Brad and I are not angry with our nurse. It's just a little disappointing and sad. We know why she left. We understand. We are so grateful. She really did change our lives. She gave me my life back--8 months ago now. You may think that sounds like an exaggeration, but I am confident it is not. She worked with us through formula pukes, colds, an ER run, more colds, a move. She cared for him in a pack and play, bending down to him so that she ...

      Finally getting around to getting these thoughts written down!     Ok. So where to start? Well, here's an interesting note about it. It was a more emotional experience for me than for Brad. It just did something different for me--good things for both of us, but completely different.      Driving to Women and Babies the feelings got real . We both felt nervous, scared, shaky, and just kind of burdened. I asked Brad before we went in, "Why are we doing this?" not because I was questioning doing it, but because I was sensing that it could bring up some dark stuff and I wanted to be able to speak the truth to myself about why it was necessary. The answer to that question came to me later in the visit quite clearly.      Once we got there, the chaplain came and met us in a family room. I don't know if it's right of me to use names when I haven't gotten specific permission, so I will just keep names out of this. The chaplain facilit...

      Leo had a check up with his PCP and it went so well! His weight was up. He's not huge, but he's on a "Leo curve." His length and head circumference are growing. His BMI is 50th percentile. And the biggest thing was that she didn't change his eating regiment. Let me explain why that's so huge.     First, I need to back up. Anticipating this appointment was a bit of a mental struggle. We had so many "check ups" where we heard "no weight gain," "weight loss," "no weight gain," "try this," "try that." We've had so many bad appointments. So when we haven't been to an appointment in a while and we are preparing for one, old emotions are stirred up. It's easy to expect bad news. And bad news--or hard news--from an appointment like this one means that the doctor tells you to start a completely new routine or schedule. I would work so hard to keep Leo on his set feeding schedule and when a ne...

      Friday went so well!! My sister-in-law, Amber, came into Philly with me and we were feeling very accomplished at all that we could do before 12pm. Leo's first appointment was at 9:15am and we were home around 2:30pm.     Getting the EEG was interesting. We got in the room and I laid Leo onto the bed. The lady (I don't know her job title) then said she had to swaddle Leo so that she could attach all the wire things to him. He did not like that. That was honestly the hardest part. He wasn't completely losing his mind. He was doing better than I would've thought. But he was not happy. I held his hand, put a teether in his mouth, breathed on his face (I know it sounds weird, but it can help calm him down) and sang to him. They helped a little bit. While this was going on I asked the lady about results. She said to expect them in about a week.      So Leo stayed strapped up for maybe 3-5 minutes of the EEG. Oh. I forgot to say that while she was ...