A Little More of an Update

 Hiya' Friends! These are some things regarding Leo's care, appointments, therapies, development, etc. that are rolling around in our heads these days.

Eating, Pukes, Weight

We haven't seen nutrition or GI in a little bit. We've monitored his weight in our own way or through some of the appointments we have had. It's not at a totally great place, but I'm not too concerned. He is mostly going up, but has some up and downs just not drastic. Brad and I are confident in feeding Leo some food that we blend up ourselves (instead of the packaged) in order to expand our options of what we can feed him. We are not replacing meals with what we have blended, but just introducing new ingredients into his system in a more significant portion (60mls of blended food). This is a bit of a time-consuming process and so far we have run into one ingredient that did not seem to sit well in his system. He did not seem to adjust to it even with some time. We have seen that feeding him the food that we blend has seemed to stay down better than his current food. As I mentioned, we are not giving it to him in the same quantity as the packaged food, but even with 120ml at a time, he seems to be doing better with it.

Prayers appreciated in regard to us learning about blending food, nutrition, and learning Leo's body more. Also, please pray for wisdom for us and his doctors and for good communication. I do not like it when I disagree with what the doctors are saying. They haven't been disrespectful to me at all, it's just my personality. Lastly, please just pray for Leo's body and it's growth and development. It's been such a journey. We do not freak out about his weight like we used to. We have seen many things help him. It's still a very uncertain thing. And we know his development will look different than the typical so...we have more peace than we used to. But there is always more knowledge and wisdom that can be aquired.

Therapies

The biggest prayer request we have here is for our transition from Early Intervention (EI) into the IU. We have been receiving therapy through Early Intervention. They come to our house. But EI stops at age 3. That's right. LEO WILL BE THREE IN MARCH. holy. crap. Anyways, I'm not looking forward to this transition. There are a lot of moving pieces. We are so grateful to live somewhere where there are so many resources for us and kids like Leo, but it means wading through a lot because we aren't going to use all of them. So far, this transition has brought about conversations for Brad and I about what we want Leo's therapy/school to look like in the future. What do we want him to work towards? How does it fit in to our values and hopes for our family? It's been more abstract things and it will take sometime to work those out practically.

I'm not even sure if all of that makes sense, but please pray for this transition. We are not set on what we want it to look like for Leo after he turns 3. We know more than we used to about what we want it to look like. And we are grateful to our therapists and case workers. We are just very much stepping into a new chapter. 

Miscellaneous 

Our Philly trips are much more like one every two months these days! I have some labs that I need to get done for Leo and an ultrasound of a bump on his back. We already did one of it. It showed just a pocket of fat, but we need to monitor it and there's another one. Those are things that I'd like to get cleared up. We will be starting with a new PCP this month (same office, different doctor) so prayers for that to go smoothly. AND it's actually a bit of a big deal to us that we are trying to switch Leo's meds to a more local pharmacy. Prayers for that transition to go smoothly.

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We are ever grateful for y'all's support and encouragement. Thanks for caring about us and Leo. We are so grateful for community and for our community. Personally, I've been sitting in a season of just gratefulness for what our life looks like. Leo's got such strengths, beauty, and joy. It's not a bad life, it's a different life. There is so much good in who Leo is and in how Leo is. Thanks for being on our journey to hear about it.

Love and Peace in this festive season,

Charis

for Brad and Leo, too