Leo, Our Little Lion Man

      I have heard from many other mothers of special needs children that those first approximately 3 years can be particularly overwhelming. I've been contemplating that today.      We just had a weight check with our pcp. Leo's doing well. He's having some issues at night--just not sleeping through--and I think that it has to do with being fed and digesting at night. I explained to the doctor that I would like to work toward giving him less at night and more during the day. So we discussed how we could play around with this.      She then told me that she thinks we should come back and see her in three months ...!     So. We are seeing our GI doctor in three months and our pediatrician in 3 months while keeping both updated on his eating and puking and weight gain. I talk with our nutritionist. I know if I have any questions or concerns she'll help me without an appointment. We are going in to Philly for an in-person neurology che...

     As time goes on, these updates will change--and they have changed. We started out posting a couple of times a day. Big updates and new information was coming rapidly. When we came home from the hospital the first time, there were so many appointments and transitions happening. These days there's therapy and the occasional appointment or big appointment. I know that we are not past all of the craziness. We'll never be passed all of it. What I'm saying is that when there is a lot of new things happening there's a lot of information to give in these updates. However, when not as much new data is being collected, these updates are more how we're doing (emotionally and mentally) than information-giving.     I'll start with Leo and then it'll fan out from there. He is getting over RSV. Praise God for a strong immune system. Handling phlegm and coughing proved to be a bit difficult for him with his muscle tone, but he is a strong kid. His nights have been mis...

    There's so much I don't know where to start. I've literally typed out multiple paragraphs and deleted and rethought the words. I don't know why.     Ok. House. I've said this before, but when you get so much from people it's sometimes hard to say the words "thank you" because they feel so  inadequate. Nevertheless, gratitude should never stay silent. When it comes to the house there's such a feeling of undeserving and a fear of obligation. What if I don't say the right things? What if I don't sound grateful enough? How do I accept this help without being stuck up about it? I don't know. I say all of that to try and communicate that we are grateful, a bit in awe, humbled by accepting what God has for us and also seeing that God is working in others as well, and just feeling totally spoiled in this pretty cool house of ours.      As it relates to Leo, it's pretty great that he has his own room. Other than the creaky floor I think ...

      We move in 3 days and I need a packing break!     First, let's just say that God has orchestrated our house work and it's amazing to be reminded that He is taking care of us in such big ways. More work has been done on our house than we had planned and we haven't spent as much money as we had planned. Thank you to all who helped on our house. Thank you. We are flabbergasted.      Leo got his stroller last week! And I found that it was confirmation of God moving us to a house because that thing in our 3 room apartment.......?! It takes up so much space! We are so grateful to be getting more space. As far as the stroller goes, Leo's not the biggest fan. When I distract him with teethers or food he is content. But he is not content on his own in it right now. I am hopeful that PT will help me adjust the straps and supports and that with consistent work we can get more comfortable with it.      Leo's weight has continued to kind o...

   This post has been written over the course of several days. If this update is scattered or confusing time wise that's why. There's a lot to praise God for. It feels like things are going well around here. Here's my word dump.             Leo's weight is a bit concerning. He recovered from covid, got a nighttime nurse, switched to whole foods, and went from 4 feeds to 3 feeds a day (which I am now calling meals). We have also been moving from 1 to 3 meals of whole foods a day, have been upping the amount that he gets at each meal, and upping the rate at which he gets the food. Little lion man has been adjusting to a whole lot these days, specifically in the eating and weight area. Oh! And he's gotten another molar, another molar coming in, and another front tooth coming in. Big note: he has yet to puke up the whole foods. I'm serious. He hasn't puked up the whole foods. And he can be on the ground, in the car seat, held, sleeping, agit...

      Two things that I want to say on here. One. As we prepare to move into our house, we are repeatedly reminded of how the Lord provides. Many of you gave to us financially right after Leo was born. It was such a humbling experience to not have to worry about finances during that time. We were able to save much of what was given to us then and it really impacted us being able to put money down on this house. We see the Lord provide through you. We are humbled by the reality that we can't do this on our own. But God did not create us to be alone. Can I get an amen?!     So we wanted to come back to this and say a really clear "thank you" for being the loving hands of Jesus in your generosity to us. It's uncomfortable in a way, and comforting in a way.  We could not have moved into this house without it. Thanks for helping us get into a bigger space and a space to call our own.  We are excited for Leo to have his own room, our nurse to have more space...

      Let's pretend we are face to face and we both have time and I am able to answer this question fully.     Nighttime nursing started and....wow. It's going well! It's a good thing! But...whoa. It's really hard. We both feel confident about our nurse. We feel comfortable with her. But laying in bed and hearing when Leo is awake--coughing, gagging, crying--and not going to him is SO hard. The first night I was awake for the whole time that Leo was awake. And, personally, I find it difficult to navigate communicating with our nurse. She and Leo need to learn each other. She is not me. Not everything will be exactly the same. But I also know him the best and I am bringing her in to it. I don't know if I'm accurately communicating this but it's just complicated. I find it difficult to tell someone what to do. However, I also don't want my fear of someone to keep me from getting my kid what he needs. But this has also shown me that I need to let go of cont...