Update

Felipe is doing very well with his new braces.  They seem lighter and a little more flexible.  So they move with his feet better which allows him to crawl with them.  This is great bc he can crawl and try to pull himself to stand while he is playing not just when we are doing our exercises.

We had first session with acupuncturist.  He was very kind and gentle with Felipe.  He was very knowledgeable regarding nerve damage and set out a plan for the next 3 weeks.  We will go twice a week for 3 weeks in the hopes to see some additional nerve stimulation.  If there is progress, great, if not, hey, we tried everything available to him.

On Friday we did the EMG/NVG test.  This test measures nerve damage and muscle damage.  We probably should have done this test sooner but the neurologist didn't suggest it until now.  The results were very encouraging.  The EMG test consists of the technician putting two sensors on the baby's foot, and then putting a small needle in his muscle and send a slight electrical current.  The NVG is similar but no needle, just two medal prods the send an electrical current.  The results show if the muscle and contract and release and if the nerves are damages.  The damage is very mild in the L5, S2 area (butt area and ankle area).  While the damage can't be repaired the nerves can learn to travel in different ways to achieve the same result.  In that sense, the neurologist is very optimistic that Felipe's recovery is going well.  Initially she thought the results would be worse bc of her physical exam of Felipe in February.  Again, he has progress since, but she hasn't his attempts at walking.  We are to follow up with her in 6 months to repeat the test but to also make a plan for Felipe's recovery.

Knowing the area that is damaged, the physical therapist are designing the more intense workouts for his damaged area.  I will do the regular exercises to strengthen his legs and to relax his muscles.  We are trying to go to swimming at least 3 to 4 times a week.  Felipe really enjoys his time in the water and I feel that most of the recent progress is due to the swimming.  Today he kicked in the water, he didn't do that last week! Glory to God!!

With our current schedule, Felipe is passing out at 7-8pm.  He can barely hold up his head when we make it back home.  He has skipped dinner, and just drank a bottle of milk, bc he just wants to go to sleep.  I was reminded by the acupuncturist to be more mindful of his food.  I'm trying to give him as much as he wants but he is getting pretty adamant when he wants and how he wants his food.  Its amazing to see a little personality grow.

I'm also tired, in large part bc I carried Felipe into Manhattan. We took the subway and it was just faster if I left the stroller behind.  But all the carrying is starting to take a toll on my back.  We are still waiting on the accessaride application.  However thinking about how close the appointments are, I'm not sure how helpful that service is.  The accessaride says that they will be at the appointment time within 30-45 minutes.  So I can be 45 minutes to a doctors appointment.  Mt Sinai has a 15 minutes late policy, after that, they can't guarantee that they will accommodate you. Not sure the service would be helpful with a crazy, ever changing schedule that I have right now with Felipe.

To do: SSI application!!!! and also find a rehab doctor, as per PT, that is needed right now.  I am going to call Ortho to confirm that I really need rehab doctor or if I do, if they have one in  HSS they can refer me to.