Adjusting to Home

     We finally came home. We wanted to for so long. But what does being home entail? We knew it would be an adjustment, and we're only two days in. 

    Nights are not silent. Leo is getting used to sleeping on a different surface and sleeping while connected to the feeding pump is an adjustment for his body, too. Sometimes he wakes up with coughs and gags and a spit up. Other times he can be awake and laying down (horizontal) and getting fed through the tube and not spit up. I am hopeful that we can get to a point where he can fall asleep on his own while connected to the pump and even if he wakes up not put me on edge by waiting to hear a cough and gag. I don't know if I'm explaining that well, but waiting to hear him start to gag is very stressful. I don't think we'll ever get rid of this stuff completely, but we're working on managing it by understanding his body more. 

    Nights aren't completely quiet around here, but we are very hopeful that they will get smoother. Again. Adjusting back from the hospital requires time--for all of us.

    Keeping up with his medicines has been a bit difficult. I am working on how to organize myself in the best way. My win today was remembering to take one of his medicines with us to the pediatrician appointment because he needed it while we were out. 

    The other thing that's interesting to adjust to is his pukes. What I mean is, they're not gone (obviously). It's hard to deal with them mentally when they do happen. My mind can very easily go to, "Why did he puke? What if he does this every time? What if he loses weight? What if we go back to the hospital?" It's just easy to freak out. But, overall--big picture--he's doing so well, even if we have some bumps in the road. That's every kid!

    Could you pray for

-nights to go more smoothly

-Leo to continue to gain weight

-clarity, strength, and organization when it comes to his follow-up appointments and really just everything that Leo has going on constantly

-for the medicines to continue to help him, for whatever future medicines he may go on, and for me remembering to give them and all that

-mental stamina to give every worry to the Lord

-the peace of mind to enjoy Leo in the midst of all of this

God bless.

https://drive.google.com/uc?export=view&id=1O_s0nFkwb81MzejxqWyM-erScsBBH0k8

Comments

  1. Becky WoodsApril 21, 2022 at 4:05 PM

    Oh what a journey. I tear up reading this and remembering a preemie foster son we cared for. He was on a heart monitor and oxygen when he came to us at 6 months. His skin was almost translucent and you could see some of his veins. He would drink maybe an ounce or two every 45 minutes which left me exhausted all the time. We had many doctor visits and twice Keith had to do CPR on him. Then we found out he had reflux which lead to a whole other range of things to do and remember. All this to say that all the adjusting and learning and listening and waiting and trusting and praying is exhausting. You guys are doing a great job! Keep leaning on each other and let those around you help as they can. Take care of yourselves and your relationship too so that you can continue to provide all that Leo needs. You will continue to be in my prayers.

    ReplyDelete

Post a Comment

Popular posts from this blog

Leo is 3

Image
 *disclaimer* I just need to say that this post was written many times. Many things were written and then deleted. Paragraphs were switched around. Some sentences just didn't make sense at all. Trying to reflect on Leo's life as a whole obviously leaves me a bit at a loss for words. I think there's some good nuggets of truth in here. I know that scattered nature accurately reflects my mind as well. So, here's some thoughts from Leo's 3 years of life because I want to say so much but I never felt like it came out the way I wanted but I don't want that to keep me from sharing it :) A reflection on Leo's 3 years of life, from the perspective of his mom, written without fear of offending or coming across arrogant... I wish that his birthday brought only happy memories and not all the painful ones. We are overjoyed at who Leo is and how he is. We see great strength in his differences and interest in a life we never thought we'd have. But the very moment he wa
Read more

Happy 2024!

Image
 Some goings-on in the Wilcox family :D Leo got a haircut. We shaved the little lion's mane. But it'll grow back. I promise! We just think he's the cutest. So, when he gets a straight buzz, I've been doing it. I feel very accomplished that I can buzz his head and get us both cleaned up afterwards. However, when he gets more of a haircut it's either my sister or my cousin doing it while I hold him. I'm a big fan of the buzz, though. We had a family filled Christmas. Blessed. To be a blessing. Holidays were sweet times. A little story from them: We did a Friendsgiving one night and met some friends of friends. One guy asked to hold Leo and then offered to keep him while Brad and I got food and ate. It was a beautifully weird feeling to plate my food with Brad and sit down and eat while hearing Leo's happy noises from the couch. Leo was chatting away and the guy was so great with him. It was so wonderful to practice setting aside the voices of, "Is he frus
Read more

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
Read more