More of the Same

This is a big word vomit. Here's how caring for Leo is going! Thanks for reading.

    More of the same means feeding, weight, and puking stuff. He's continued to gain weight. Why does that not feel like as big of a deal as it should be to me, considering where we've come from? He's continuing to gain weight! It's not always a huge jump, and some weeks it's more of maintaining, but his curve is going up. We've continued to have puking issues since leaving the hospital. He also has six more teeth, and more coming, I believe. Right now taking bottles by mouth isn't working. I can give him about an oz by mouth, but the rest goes through the tube so that he doesn't puke it all up. 

    If I may take a moment to describe his feeding in depth right now. There are many ways to feed him. He takes a bottle and he has the tube. If he is eating through the mouth, he can have formula in a bottle, formula with oatmeal added, or formula with oatmeal blended into it. Also, puree. If he takes through the tube it can be straight formula or formula blended with oatmeal. It can be at a set rate through the pump (for example, 50ml per hour) or it could by syringed in at a faster rate. He responds differently whether he's sleeping or awake and if he's being held or lying down. The more he's hooked up to the pump throughout the day the more he agitates his tube site. We are figuring out how fast we can set the pump while he is awake and lying down and not have pukes (so that I don't have to hold him all day). I say all of that to illustrate that feeding him means making a lot of decisions. And there are always variables that we can change. 

    

    As of right now, we seem to have found a way to feed him through the pump to make sure he is getting what he needs right now. I am also in contact with the GI office to make sure his medicine doses are adjusted per his weight gains. It also seems that while he pukes up formula, when I feed him puree it doesn't come up as much. I am really considering that his body wants solids and is tired of formula. But we need to figure out how to satisfy his caloric needs so that he can gain weight.

    

    It's discouraging to feel like we've gone backwards. It's hard to constantly be questioning if something is seriously wrong or if he's teething and he just needs time. When I am stressed, there are many decisions that I can doubt and it's tiring. Please, can you pray for patience, continued weight gain, and clarity in communicating with doctors and learning what Leo's body needs? Also, please pray that we can get in with a pediatrician up in Hershey. We are hoping to see this pediatrician who only sees complex kids and we have heard good things about her. I'm hopeful to hear her perspective as someone who has dealt with many kids like Leo. 

    

    I find myself not wanting to paint a really bleak picture here! I am writing this after feeding Leo 2oz from the bottle, having him spit it up, and then connecting him to the pump. My current mood is discouraged. However, it's encouraging that we have the pump and are figuring out how to give him what he needs. And Brad and I really do feel like we are more in tune with what Leo needs--reading him better. There's just a lot of fear in my heart about making calls that turn out to be not what Leo needs...... When it comes down to it, it's trusting God. But all of that to say, Leo is a happy kid, gaining weight, and continually showing us more personality. So I don't want the stress to overshadow the joys we are finding. Even in a difficult situation, we can be ok. We are learning that we don't need to--and can't--fix everything. We are also learning to lean in to what God is saying and let go of our fear of what people think. Well that last one is probably more me than Brad. But my point is, God is working and Leo is doing well. 

    Therapists have been really impressed with him recently. He is working on sitting up (supported) and holding his head up, reaching for toys from his side and in front of him, and biting and tongue control. In his last vision therapy session, he very intentionally reached for the toy in front of him about 15 times. And he looked at it, not straight at it, but his eyes calmed down and stayed in one direction. Our physical therapist has been very impressed with his ability to reach and with how he is able to calm his body in certain positions and move intentionally from there. 

    Appointments. We have had a beautiful lull in appointments this month! But we have 3 Philly appointments coming up in the first half of June. Leo will see a movement specialist, neuroopthamologist, and compass care. We are excited to see the movement specialist because his movements are so distinct and impact everything. He continues on the gabapentin, btw, and that is helping him. Our neurologist was pleased with how his movements are looking. My current preparation for this appointment is taking videos of movement things that we have questions about. We are really hoping for insight into what is going on in his body and how to understand his movements. 

    

    The eye appointment could be really helpful as well. He has only been to an eye doctor twice and then I hadn't found a new eye doc that accepted our insurance. This appointment was booked during our hospital stay and I'm very thankful. Now that I think of it, it's possible that we'll get big information at these appointments and it's also possible that they'll be very vague with a "you just have to wait and see." So we're just going to have to take them as they come. 

    Lastly, we have Compass Care. We don't know exactly what this one will look like. Our understanding is the Compass Care is a CHOP program for kids with complex medical issues. They help coordinate care for this child as well as support the family. I do believe that with compass care, if Leo is admitted to CHOP again, and doctor will visit him bedside from compass care as one who knows the "full picture" of Leo. Not a specialist, but one who is fully aware of all of the things Leo has side by side. Does that make sense? We are very excited to be a part of this program. It seems like it will be very helpful.

    Each of these appointments is with a new specialist and I don't know what kind of information we will be processing from them. Your prayer over them is cherished. Let's see what God does, right? And your prayers over his continued issues with feeding, puking, and weight gain. I really don't know how to communicate them. In some ways I'm encouraged that he's gaining and even though he isn't eating well by mouth right now, we've figured out a good way to feed him by the pump, he's tolerating it well, and once teething calms down he'll be back to what he was doing. And then in other ways I'm freaking out that we should be addressing the pukes more and he will need another hospital stay and a doctor is going to recommend something that we disagree with and how do we handle that? So I'll leave all of this in here knowing that God is in control, feeling confident in how we are handling it, but showing the stress of decision making.

    Nights! He has his good nights and his bad nights. He seems to be getting into the habit of waking up around 3am and then 5am. He does have bad nights where he can't seem to sleep well and/or stop coughing and gagging. We hate that he wakes up coughing and gagging. We wish he didn't experience that. We are trying to help him tolerate as much as he can during the day so that he doesn't have to take so much at night. But he's not moving around at night so he seems to tolerate better then. Anyway, it's a whole thing. Please pray for good sleep or rest in our house. I get up with Leo and Brad gets broken sleep even if he's not getting up with him (because he goes to work outside of the home in the morning). We have a couple of options that are moving through the agency's training, I believe. But it's not been a fast process. Please pray over whoever it is that God has--if he does have someone--to come into our home and watch after Leo. Just pray over all of that situation if it is going to happen. We are hoping to get someone to help with the nights Mon-Fri. 

    Now, I can't forget the really good things! I list and explain a lot of requests--by the way, I told you this was going to be long--on here and I don't want to forget to praise God and practice gratefulness for all he has done. 

    Leo has been measured for a stroller, stander, and orthotics, so those are in the works. Also, after being measured for orthotics, the guy told me that I needed to get our primary doctor to send a prescription to him for insurance purposes. And said something to the effect of, "you're gonna have to bug him to make sure it happens." I was overjoyed to tell him that I had full confidence that our doctor would send it to him and I would not have to nag. Our pediatrician has called specialists, sought advise and researched Leo's needs outside of our appointments. He has dealt with insurance issues for us without me even asking for it. He has very much been an advocate for us, an incredible resource and support. We have been beyond blessed with our primary doctor. 

    Leo had an Early Intervention Evaluation that was a bit of a formality since Leo's diagnosis and development show a clear need for their services. But it was good to revisit our goals and see how he's grown. The two ladies we spoke with were enamored with his sweet spirit and engaged personality. Brad and I continue to see more and more personality from this kid and it's one of the best things. 

    Brad and I play ultimate frisbee almost every Friday and we have support from family and friends who come to watch Leo so that we can get that time away. Frisbee as a sport and the community have been deeply encouraging to us. We are so happy to continue to be able to play.

    I think that's it......oh, we've got two trips we would like to make this summer and would appreciate your prayers over the plans, expectations, and executions of them. 

    The word vomit is over in my mind. Sorry, for the gross imagery, but in some ways it's kind of fitting considering Leo's issue, haha. Thanks a million. I hope you are blessed by seeing God in a new way. 

This kid wants EVERYTHING in his mouth!👇🏼