We were discharged on thursday night, around 6pm. We have been having trouble with neighbors so hence a delay in an update. Felipe went home with Antibiotics and he is taking them regularly. 3x a day, and has gotten used to taking medicine. Before it was a struggle, at least two people needed to hold him down. Now with constant reminders that its good for him, he stops struggling but still shakes his head a lot.
We left around 6pm on Thursday bc our pediatrician did such a great job in getting all specialist to see Felipe before he left. Even the Orthopedic surgeon who was in surgery most of the day. She came after a very long case and looked over Felipe's feet and hips. So, at this point, his muscles are starting to get so stiff that they are pulling his hips out of their joint. For babies his age this usually means more surgical intervention, however, the Ortho and pediatrian is hopeful that with intensive physical therapy and perhaps botox, he can avoid going into surgery.
So now I have a timer, that goes off every 30 minutes, where I stretch out his hips and feet. We want more flexibility so that the braces can do their job. At this point, she told me to not use the braces, since they are only giving him blisters and the flexibility in the feet aren't there. She also told me to come back to see her after the MRI on the 24th. She wants to rule out officially (she pretty much things its not the issues but is overcautious to make a decision without seeing the films) that the fatty tumor didn't re-tether the cord, hence affecting his hips. Re-tethering of the cord is something that we were warned about. the usual expected time for that would be 30 to 50 years, so we are hoping for the best. And clearly re-tethering would mean he would have to be operated on again.
We are still scheduled for the MRI on 1/24. I have to call the urologist for a follow up appointment sometime next week as well. Felipe has been cleared for physical therapy again, with no real restrictions given he has no stent right now. MRI is so taht we can see how the spine is doing. If the swelling has gone down we are the right direction
During all this, I am looking for a new apartment, one where the neighbors choices don't interfere w our ability to enjoy our space. Thanks to members of the mission ministry at Brooklyn Tabernacle Church, we've got some momentum in beginning our search. Thank you for the brothers and sisters for their prayers and their encouragement. I've got a lot of my plate but made so much easier with the friendly reminder that god's strength will get me through it all.
We've off to go swimming, its felipe's first time. I'm excited to see how he will react to it all. My hope is that he will love it and I can finally get around to enrolling him in swim class. Swimming will not only build muscle tone it will help him relaxing his muscles.
FELIPE SAYS IGYGF;VC;TCT
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