Home from CHOP

     We are home! 

    Thank you to all--again the words don't feel like enough--who have helped us in this transition. We have had people give us a place to sleep, meals at the hospital, meals here at home, prayers, texts, calls, visits. Thank you. 

    So. Leo and I are home and Brad is back to work! His tube port--I call it a button--seems to be less painful but it has some scabbing that I will be happy to see disappear. We are just caring for the site but able to use it. The button freaks me out more than it does Brad. But, I have successfully given him medicine through the tube and done a couple of feeds through it. We are using it supplementally. So he still takes most of his food by mouth, but we can put a little bit more in him with the tube. We can also give some extra to him at the end of the day if we need. 

    He still has spit up issues when his stomach is really full (and has no solids in it) so we would appreciate your prayers as Leo and I try and figure out a new routine. Just learning what works best for him and the best way to get his stomach used to larger quantities if that's possible.

    I am going to the pediatricians on Friday for a weight check and for him to look at the scabbing around the button. I still feel nervous about weight checks. Please just pray for him to be able to gain well. Overall, he has been eating the same amount but in fewer feedings so we are working him up to bigger meals!

    He had an MRI when he was at CHOP as well. It showed the same thing that the brain ultrasound did. He has some extra fluid in the ventricles in his brain, but it is not causing pressure or being obstructed. The neurosurgeon looked over the results and explained them to us. Basically, the blood pockets that were in Leo's brain from the bleeding at delivery have emptied out. So there's some extra space in there from the atrophy and that space has fluid in it.....laymen's terms, but I think that's the gist. They are not seeing anything concerning and said we could check-in in another 6 months. 

    The rehab medicine doctor came to see Leo. He conversed with the neurologist and neurosurgeon and suggested a medicine to start Leo on for his movements. Our understanding is that Leo has a movement disorder. It's a very small dose and it could help him calm down and not be in constant motion. This could help weight gain and we would hope that it would help him in therapy as well. There could be a lot to tweak and work out though. Please pray for Brad and I to be on the same page as we move forward. We haven't started the medicine. We wanted to give ourselves time to adjust at home and ask the questions that we wanted.

    An extra blessing is that our neurologist called our pediatrician to tell him all about everything Leo had done last week. It is so comforting to know that the professionals are in contact and it's not up to me. And our pediatrician sees a very complete picture of all of Leo's.......stuff. 

    Lastly, we were referred to a CP clinic which is a praise but also feels a little overwhelming.

    Follow ups and check ups will be in our future! Prayers appreciated for his button to heal and for feeds to increase and for patience and strength from the Lord for Brad and I as different things drain us in different ways. 

Thanks for caring! Thanks for keeping up with us!