Spring is almost finally here, everyone! Though it’s crazy to think that we have already celebrated Easter Sunday. It doesn’t quite feel like Spring here just yet, aside from the occasional volunteer patch of tulips or daffodils. 

As we enter the hopeful newness of this season from many dark and cold days,  there is also a slow transformation in Crosby! We have seen a huge improvement in his gross motor skills lately. I am thrilled to share that he is scooting- yes scooting- all over the place! 

He has been picking up speed, and can now go forward in addition to just pushing himself backward. He likes to scoot both on the floor and on his new scooter board. The scooter board was intended to roll behind him with his backpack velcroed to it, so he’s not pulling his tube site and making the line taut. But he likes to sit on it instead… lol. Of course, requiring constant supervision so he doesn’t crack his head open (this is where our amazing PT student, who is his chosen BFF, is so amazingly helpful). 

He has pulled out the g tube connector several times when the line gets unexpectedly taut (since he’s constantly scooting around and it’s hard to keep up) but thankfully, not the actual Mic-key button/g tube that goes into the stomach hole (stoma)! That sounds super ouchy. Though I know it happens to kiddos, I have been lucky enough not to experience that yet. 

He now has a new smaller feeding backpack that he is willing to wear while moving around (but only for friends or his BFF.) If I try to put his backpack on, he promptly resists. So I have to resort to following him around. And priming his pump multiple times a day when the food sloshes around and gets air in the tubing. Even if it doesn’t topple over flat, the movement and curling/slouching of the feeding bag is enough to cause a lot of air to get in. 

In fact, he resists just about everything I try to do these days. He pushes me away when I try to give him meds, connect or adjust his feeds or change his diaper. He’s also refusing to take any bites of food right now, gagging when he used to take it begrudgingly. So with this amazing newfound mobility has also come some confidence, yes, but also downright defiance! Plus, he’s pushing his third birthday. So he’s realizing he has choices now, and he’s not going to do anything he doesn’t want to do! Oftentimes, the boys try to motivate or barter with him to try to get him to let me unzip his pjs to do whatever I need to do. But when no one else is home, I have resorted to fake crying some days because it immediately stops him in his tracks and he stops fighting! 

Feel free to laugh at me. I do what I gotta do. He is very aware of emotions, so when mommy is sad, he’s like… “OK, do whatever you want, mom!” Im sure this tactic won’t last too long. He’s on the verge of figuring me out! The big boys were calling me out on the fake crying just last night, and I know he heard them! He is super smart and understands much of what we say.

He also hates his stander now (it’s so boring now that he wants to move) and it’s quite a challenge to get him in it without a lot of crying, screaming and kicking. I have come to accept 30 minutes a day as a huge win- and we don’t achieve that every day. We invested in some knee immobilizers to basically mimic what we are doing in the stander, but to stand stationary at the edge of a piece of furniture or the coffee table. (He isn’t cruising just yet.) He liked them for a few days, but has decided he doesn’t like those either and gets very frustrated when we try to get him to stand in them. Ultimately, he wants to pull to stand without them- which is great, but he isn’t there yet. The desire and attempt is HUGE, though. 

Despite the frustrating things that we have to work through every day, we have SO much to be thankful for. Our family friends continue to shower Crosby and I with love and support on a weekly basis, and Crosby’s three PT friends have given us so much hope as we see him finally developing and getting stronger. We also started a new formula last Thursday (a week ago) when in clinic, since he’s still vomiting with diarrhea and not growing. This formula is a peptide, but it’s higher calorie without needing to go up on the rate. It’s also thicker- like a baby food puree- and it’s more like REAL food than anything else we have ever given him, with all kinds of veggies in it. 

Since starting that, his weight has gone up more in a single week than it has in a LONG time. I’m talking a few kgs, but the biggest increase we have seen since we started checking his weight weekly again. So we’re hopeful this might be the weight answer for him!!! His diarrhea is gone (what?!?), but he is still adjusting and has had a very sore bottom just due to his stool frequency. Please pray it continues to help!!!! Jumping for joy at the thought of it. This would be a true miracle, friends. 

In terms of vomiting though, that is still a problem. No one knows why still. And why he can’t tolerate higher feed rates more than 43 ml/hour. And even with that, puking multiple times a day. We are still waiting on insurance to approve the Botox procedure to see if that helps at all. More coming on that later. And he continues to struggle with med weans, but we just hope he will adjust. We weaned hydrocortisone and Jakafi last week, and his rash has come back and he’s much more irritable and itchy. 

So this leads me to this thought. There is always something, part of our hearts or our circumstances, that we need to surrender to the Lord more fully. There is never a time where we can handle it all in our own strength or power. And our situation is a perfect example of that. 

I just want to leave this quote with everyone today, that we heard over Lent. Maybe you heard it, too, if you listen to the Hallow app. It’s radical and difficult thinking, but it’s what the Lord calls us to and it describes the surrender he desires for us. To set us free. 

“Can there be anything more consoling than to look at a burden or a humiliation not just as it is in itself but as the will of God entrusted to you at that moment? Viewed in that way, no matter how heavy or trying the burden or difficulty, I am able to carry it in a spirit that indeed can make it light. For the realization that it comes from God and is his will for me carries with it a feeling of enthusiasm, of accomplishment, of importance that brings joy and consolation to the heart.”  -Father Ciszek, “He Leadeth Me”

Have a beautiful Easter season! Now that’s it’s no longer Lent, I hope to bring our frequent updates back. Blessings to you and your families.