A flurry of appointments & updates

ORTHO:
His xray show that his hips are getting worse, out of place in the sockets.  The left seems to be ok, its the right the doctor is concerned about.  He prescribed a hip brace for night, in the hopes that after 4 months of use, it will improve the position of the hips.  If the position improves, great, no surgery.  If it does not, we will have to have a serious consideration to surgery.  I would love to avoid surgery, and now that Felipe's legs are more flexible and less stiff, I believe the hip brace will be a real productive option.  God bless our efforts.

UROLOGY:
His examination shows that the bladder muscles are working.  They contract at the time that he begins to urinate.  This was a concern of ours given that with the spinal cord injury, all muscle related functions were disrupted below his waist.  So, great news to know that the muscle is working.  however, it not working properly.  The muscle continues to contract during urination when it is supposed to relax.  Personally, in my non-medical opinion, I think Felipe's body is just so out of wack, his muscles just started to appreciate the ability to hold his own weight, I think in there is a lot of confusion.  We also did a kidney sonogram which shows that the left kidney, the one that was operated on to remove a blockage, is now MORE dilated that before.  One explanation can be that the stent, which was removed early bc Felipe developed a very high fever, created some scar tissue to form, closing off the opening.  There are several procedures to explore before surgery, all of which are going to evaluate in 6 months.

NEUROSURGEON:
Appointment scheduled for 10/9

NEUROLOGY
Appointment scheduled with new doctor for October 1st.  I'm a bit apprehensive with this appointment.  The old doctor left, transferred to a different hospital.  This doctor will have to review her notes and then formulate an opinion of his progress.  I'm nervous bc the staff, out of my 4 interactions with them, have always been so negative.  They have been rude, inconsiderate, snarky, and down right bitchy.  I have left there crying out of rage and its just the receptionist.  I pray that I can go to this appointment incident free, or else, find a way to resolve the hostility in a productive manner.  I try to let things go, I am not quick to call in a manager, but at this point when I dread going to an office for my child's health bc I can't stand the staff at the provider's office, that's going too far.  I think I've waited too long as it is.  God help me on that day.

PHYSICAL THERAPY
Felipe is progressing by leaps and bounds.  The therapist is amazed how much stronger Felipe is from one day to another.  Felipe continues to do physical therapy 5 times a week in the home using the Cuevas Medek Method.  This method really clicks with Felipe's body.  Felipe, not so much.  When he sees the therapist he either laughs or starts immediately crying.  During the sessions, there is a lot of crying, but more so out of the effort it takes Felipe to do the exercises and positions.  I like to say its like the guys at the gym that grunt while they are lifting weights.  Either way, each session ends with either a 2 hour nap, or a very sweaty baby.  Thank God for this therapist who has the patience and determination to work with Felipe.  We have been blessed with his professionalism and commitment to Felipe.

SPEECH
Felipe is a little chatterbox!  He started to use words like "go" "bye" "hi" "water" "bubbles" "bottle" "banana" "plane" and "more" on a regular basis  Other words I've heard him say are "thank you" "please" "mine" "yes" eese" for squeeze.  And the most frequently used word is "NO!" He really enjoys his sessions with the instructor.  He blew her a kiss good bye today....who is a teacher's pet?! lol

SPECIAL Instruction
Felipe doesn't like this too much.  Partially bc the instructor is trying to teach him boundaries and routines and he struggles with this concept.  The last focus was on self-soothing.  Felipe doesn't have this ability yet.  Ironically I am to blame.  He was in the hospital, I petted his head, stroked his hair, carried him to sooth him.  Apparently now he relies on that outside soothing and needs to learn how to do it for himself.  It pains me so.  This is a tough session for both of us.  I am hopeful that this is the right thing to do as we progress to getting Felipe to sleep on his own, and at an earlier time.

SLEEP
Felipe still isn't able to fall asleep on his own.  We are creating a routine of bathing, reading, then singing, a prayer and then listening to classical music and then going to sleep.  However, so far, it takes about 3 hours in bed for him to fall asleep.  I have to remain awake so that when he passed out, I can put him into the hip brace.  Last night he was in it for 1 hour, hoping to increase the time over the next few weeks.  I have a hard time staying awake!!  He is too much of a night owl for me.  God help us!

FOOD
Thank God, he is not a picky eater.  He eats everything Mami or Daddy is eating.  Sometimes will leave his plate to eat from ours.  He didn't like bananas before, now he eats one in the morning, every day.  Some meals he eats very little and then later in the day he eats an adult size portion of food.  Trying to keep his eating in perspective bc food has been an issue for myself, I don't want to pass that along to him.  He is learning to use the fork and is pretty independent with the spoon right now.

MAMI CARE
I've been fortunate to have more days in which my family and friends can help take care of Felipe.  In that time I have been able to regroup and set out some goals for myself and for Felipe.  I'm striving to meet more parents of children with spina bifida so I can get some support and Felipe can meet new kids too.  I'm also looking for more play groups in my area.  The majority seem to meet in Manhattan, which at times clash with our rehabilitative therapy schedule.  I'm continuing on my health journey with the aid of the 21 day fix, a beachbody product. I highly recommend it and its currently on sale for the month of September (message me if you are interested in more details). Its been a great tool to use and rely on when my brain is mush from lack of sleep and I can quickly put together a meal that is meant to help the family be healthier and leaner.  I've struggled to get my workouts in.  I've started a new method of crossing out days on my calender with red highlighter for workouts missed and green for the workouts completed.  I feel so much better and energized when I do the workouts, its just an issue of being consistent with my self care.

Thank you friends again for your continued prayers and thoughts.  God Bless