Leo, Our Little Lion Man

      Small update, and one with some "how are we doing?" in it (in my mind there's a difference between a "medical" update and an "emotions and state of mind" update).     Leo had a weight check today and he didn't gain in the past two weeks . And he's having big spit ups and a lot of them We are going to get some blood work done, an upcoming GI appointment, upping the calorie concentration in the formula, and starting some medicine for reflux. Many things like spit up consistency, poop frequency and consistency, and Leo's mood are still really good. So those don't seem to point to big issues. But we are hoping to get answers and it's stressful to not know.      The prayer request would be for Leo to gain weight, for us to get these spit ups under control, and for us to get answers as to why this is so difficult for him right now. Weight gain is something that many babies struggle with. It doesn't have to be serious. But, we wa...

    Ahh. That question. "How's Leo doing?" Don't get me wrong, I want this question. I mean that. It's so prevalent in my life that I really want to tell you how Leo is doing and how it affects my life. But it's hard to answer. There's a lot of big things going on that are hard to summarize, so just be ready for an answer if you ask it because I'm going to give it! As we get further away from the trauma of Leo's birth and the month after, the answer to this question becomes less and less......shocking? Newsworthy? New? Yeah, new. Looking back there was a lot of shock and a ton of unknown and some huge questions. As we move forward in time, we're further from that initial shock. We are in the process of healing and recovering. We are learning every day about Leo and what he can do. And there are still big questions about the future. When you think about it, though, there's big questions for every single person. None of us know what's rea...

       Today was a very different appointment for me than on Thursday.           Leo gained weight well over the weekend! Praise Jesus! He is also looking good on the height scale as well as his head measurements. So, we are continuing with the concentrated formula. And we will continue with the GI doctor. That appointment will be set up in a couple weeks. Prayers appreciated that he would continue to gain weight.  That also leads me to prayers for whenever introducing solid foods comes into play for him. We anticipate that chewing and swallowing could be difficult for him.      But today, we are CELEBRATING and so thankful for answered prayers!

   Ok. I have been meaning to write this update since last Friday. So I'm going to start there.     Leo had really great therapy sessions last Friday! I was particularly happy that he was in a really good mood for PT (mom-win!). She worked with him on his stomach and in sitting up. He is doing well on his stomach. He needs some assistance with keeping his core straight, but in holding his head up and turning it and even reaching he's doing really well. He's also been working really hard at holding his head up while sitting up. We have found the sitting up and leaning forward really helps him relax. Because his default is to arch, he's a very stiff baby (if you've ever held him, you know exactly what I'm talking about). It seems that even if he wants to pull his legs in, his body doesn't know how to do that so in trying to use his muscles he arches and his legs get stiff. I don't know how well I'm explaining that. But my point is, he needs help learni...

      We had an appointment with the pediatrician yesterday to look at Leo's weight. He is having trouble with weight gain. I discussed a plan with the pediatrician and even got our neurologist's feedback on it. We are moving ahead and will be back in two weeks to check Leo's weight.     Please pray that Leo gains weight. At this point, from my understanding, this is a very normal problem for babies to have. As in, babies without brain injury can struggle with this. However, if he does not gain weight then we will need to go to a GI doctor to have some tests done. I don't know exactly what they would be looking for, but potentially issues with his tone could affect how he eats.      Please, pray that he gains weight. And pray for peace in our house. It's a seemingly small issues, but there's these small voices in the back of our minds that say, "What if it's something more serious?"     Also, I know you're still praying with us for a mir...

      It's been a while! But there's some scattered things to give updates on! I keep thinking about how this blog started. When Leo was born, we were on a day-to-day updating basis. After the MRI results were given to us at CHOP, we were updating this every couple of days. Once we came home it was kind of every couple days or every appointment. Now, here we are. We are home and getting into a groove. It may sound strange, but that's it's own thing to process. But here's what's up with the little lion man.     So, I just wanted to take a moment to tell you about Leo's personality instead of only his....conditions (not quite sure the right word to use). Let me just tell you that this little boy is such a talker! What a beautiful voice. Shocker, right? The child of Brad and Charis Wilcox is a talker. He is so responsive to voices and music. And we definitely have those times where he's not angry or sad or whatever--he's just talking because he wants to...

      I don't know why it's coming to me this way, but I'm just going to do a basic--and maybe confusing--where are we at? I may repeat myself, but I just want to do a recap (for myself) of where we are at. An overview?     Here it is.     I'm pumping, off dairy (trial run), and giving Leo breastmilk in bottles. Looking back to when the doctor's said, "We'll see if he can eat on his own," to now......wow. I remember the first time he sucked on the bottle. What a relief. I am very thankful that we went through all of that to get to this point. This is one of those places where I'm reminded that this isn't a brain damage issue. Not all babies breastfeed. At his last weight check, Leo gained at a good rate but still hasn't made up, per say, from the time that he was nursing and not getting enough. So, we are talking about options with our pediatrician and just making sure we are on top of his nutrition. Big things we are thankful for: milk sup...