...I realize there are might be a few people reading this who might not know me as well as they know Felipe. I'm revamping my blog, accepted a blog writing challenge and so, "Hello!"
I'm born and raised New Yorker to immigrant parents. I had the trajectory of life drilled in my mind at an early age, you go to school, college, get a job with stability, earn your pension, retire by 40. I realize now that was my parent's dreams as they were struggling to make ends meet and retirement wasn't in sight for a long time. I started on that path, I left NY for Smith College, located in western Massachusetts for an experience where I could learn how to be on my own and away from the familiar. Things were going well, until a routine physical exam with a new doctor in 2000. I had always been "sickly" however when I complained my prior doctors just chalked it up to "growing pains".
Turns out I had an array of illnesses that had gone undiagnosed. I was diagnosed with thyroid Cancer in 2000. I had it removed and have been monitored for any advancement of the cancer and monitored to make sure I have sufficient hormone levels in my system. I also have Poly Cystic Ovarian Syndrome, which was discovered when I fainted from the pain of cramps which turned out to be a cyst bursting. I was also diagnosed with inflammatory bowel syndrome and with Fatty Liver. How I was diagnosed with each illness is a long story, a post for another day...however, my health was something that I was dealing with on a "defensive" mode. Something happened I took care of it, or tried to, as it popped up, but I wasn't trying to actively take care of myself.
I went to college and law school in the hope to be of service to others. My particular field of interest has always been children, family and persons involved in the criminal/incarceration system. I went to law school and started as an attorney for children in the new York city area. I represented kids who were in foster care, or in jeopardy of being removed from their parents due to neglect and abuse by adults in their lives. I also represented juveniles who were arrested and sent to family court. (in NY, anyone from 7 to 15 years old). It was tough work and I loved it. I spent 10-12 hours a day preparing for trials, speaking with clients, investigating allegations. It was emotionally and physically draining. My main view of life during this time was, these kids have it rough, they need my all, my needs are secondary to theirs. This view did get my clients the best of me, but it also got me sick, burnt out and almost self destructive when it came to my health. I skipped meals, didn't drink water, ate fast food late at night, drank soda to stay up, and candy to cope with the sadness around me.
This continued when I had Felipe, he was born, he needed to be taken care of w all his appointments and again, I put my needs secondary. After a night of being sick from eating too much fried things, I had the conversation with myself that it was time for a change. I didn't have the patience to deal with Felipe bc I was sick and just wanted to remain in bed. This was unacceptable. I no longer wanted to be the sickly one, always tired, always the stress cadet. I couldn't afford that with a child that needed my full attention and full energy so that he can recover from his spinal cord injury & kidney issues. So I called my friend who was a Beach Body Coach and I took the plunge. I was scared I wasn't going to be able to change, that being sick was my lot in life. However the more I went to Felipe's appointments, the more I refused to accept being in and out of medical offices was his life, the more I thought it wasn't for me either. I committed to get healthy by eating well and exercising. Motherhood changed my view of health.
So while Felipe is learning to walk and stand on his own. I have a similar path of learning to prioritize my health so I can be a stronger and more energized to be with Felipe. Thanks for stopping by to witness Felipe's and my journey. You'll see there are some bumps in the road but always moving forward.
God Bless.
Sunday 14 September 2014
Tuesday 9 September 2014
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
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
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