...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
Thursday, 14 August 2014
Growing Up....looking inward....
In the quiet moments at home, usually when Felipe passes out on top of me, I look at Felipe and imagine the life that awaits him. A light brown hair, blue eye boy, with a clearly Hispanic first and last name. I know that he would face different treatment if he had darker features, if he had different textured hair, if he grew up in a different neighborhood, etc . How to teach a child of tolerance in a world that clearly glosses over the hurts of the American Society and lets it break out into violence? I've seen the photos of the parents of Michael Brown, shot, unarmed by the police and I have wept. I look to my faith, Christianity, where the love of another is emphasized, forgiveness for those who hurt us, and with the knowledge that there is a divine power who entrust us with the job of taking care of each other. In seeing the images that mirror the civil rights movement of the 1960's streaming from my TV, I waiver and for a second wish the alternative, looking for retaliation. I am in constant prayer over the hearts and minds of our fellow citizens who treat their neighbors with so much hate and intolerance.
The intellectual part of me which to explore and analyze why does history repeat it self? how does a society evaluate itself or have moments of introspection to prevent the history from repeating itself. My more practical side wonders, how does this apply to my daily life? What have I repeated in my life, in raising Felipe, that I haven't been introspective about. Reading, Compound Effect, it warns of living life kinda on "autopilot", not being intentional in one's daily's life. In creating a new healthy lifestyle, I'm trying to evaluate certain triggers. Why do I suddenly crave sweet? Why am I looking for junk food? I've come to discover a couple of things.... 1) when I don't drink enough water, I start to crave snacking every 10 minutes. I drink a bottle of water, I'm over it and I can hold out till my next scheduled snack time. 2) I use food as a reward and I have a hard time thinking of other "rewards" that aren't food related. We've always celebrated bday with a huge meal and cake. Or on a weekly basis, "I've done well on eating for 6 days, on the 7th day, I should get a pie", LOL. Food is Fuel, not a reward.
I don't have answers yet, but keeping things at the forefront and really trying to approach things differently is what I seek to do. As for American society, with its school shooting, police brutality, & accepted level of violence, I will continue to pray for change and pray to find a way I can assist in finding peace. And perhaps I should start with the simple things, drink more water, hug Felipe tightly and tell him everyday, without fail, that I love him.
Felipe has wanted to cuddle and sleep, he has a canker sore and doesn't feel like eating. He has been holding my hand as he sleep(makes it hard to type, lol). So cute and it sparks a lot of thought and introspection. God Bless
The intellectual part of me which to explore and analyze why does history repeat it self? how does a society evaluate itself or have moments of introspection to prevent the history from repeating itself. My more practical side wonders, how does this apply to my daily life? What have I repeated in my life, in raising Felipe, that I haven't been introspective about. Reading, Compound Effect, it warns of living life kinda on "autopilot", not being intentional in one's daily's life. In creating a new healthy lifestyle, I'm trying to evaluate certain triggers. Why do I suddenly crave sweet? Why am I looking for junk food? I've come to discover a couple of things.... 1) when I don't drink enough water, I start to crave snacking every 10 minutes. I drink a bottle of water, I'm over it and I can hold out till my next scheduled snack time. 2) I use food as a reward and I have a hard time thinking of other "rewards" that aren't food related. We've always celebrated bday with a huge meal and cake. Or on a weekly basis, "I've done well on eating for 6 days, on the 7th day, I should get a pie", LOL. Food is Fuel, not a reward.
I don't have answers yet, but keeping things at the forefront and really trying to approach things differently is what I seek to do. As for American society, with its school shooting, police brutality, & accepted level of violence, I will continue to pray for change and pray to find a way I can assist in finding peace. And perhaps I should start with the simple things, drink more water, hug Felipe tightly and tell him everyday, without fail, that I love him.
Felipe has wanted to cuddle and sleep, he has a canker sore and doesn't feel like eating. He has been holding my hand as he sleep(makes it hard to type, lol). So cute and it sparks a lot of thought and introspection. God Bless
Tuesday, 12 August 2014
Felipe v. Stairs...
Sorry I had to make it a link since I didn't know how to put into the actual blog. I'm still learning how to use this blog site. lol
Chatterbox and Climber...
Felipe is doing well! He is starting to speak more. At a family BBQ, he spent his time with Abuelito Herminio pointing at passing planes "plane" "ane" "Pane" He is getting closer to saying the word clearly. During the BBQ, felipe got naked (kept the diaper, thank goodness!) and started to exercise on his own. He climbed up the stairs to give his older cousin a "high five" and then came back down and repeated it all about 4 times. Its such a great moment to capture bc he did it all on his own, with very little prompting and seemed to enjoy hs new freedom. thankfully we do not have stairs in our apartment, but going to Abuelita Blanca's house is a treat.
His cousin, 2 years old, and Felipe had a long conversation at my mother's birthday party. What about? who knows?! but they seemed to understand each other. It started after Felipe saw his cousin's toy. It seemed liked Felipe asked to play with it. and his cousin said "No, Mine" He speaks very clearly and was obvious that he did not want to share. However, Felipe continued with "bah ag go go ago" and other variations of words that seemed to lay out Felipe's argument for why he should have a chance to play with the toy. Hilarious!! In the end, the two little chatterboxes were great entertainment for the adults who watched them in suspense on how this little conversation would end. I was nervous Felipe would take a huge bite out of his cousin as he does with me. Instead, his cousin very sweetly placed the toy in front of Felipe pointed to it and said "that's baby's toy" and then let him play with it for a fraction of a second before it became his again. He is such a sweet boy for being 2, that was an enormously sweet gesture.
Another week of services and appointments. Felipe woke up on Monday morning (2am) with a high fever. It has been managed with Tylenol and Motrin and now it is a low fever, that seems to come back after 6 hrs of his medication running out. So Felipe is a little cranky and needy. We canceled his gym time on monday but kept his other appointments. However when the SI arrived he had enough energy to say hi, blow some bubbled and then fell asleep mid activity.
With the SI we reviewed from techniques for Felipe to sleep on his own and to create self soothing. He seems to enjoy all the time with the therapist. I was sad he didn't get to spend time with her but at least the SI and I caught up on various goals and expectations for Felipe. She thinks he is very bright and willing to learn.
This weekend over all has been hard for the family health wise. I haven't slept in days, mostly bc Felipe wasn't feeling well and I get up at every little noise that he makes. I'm settle my goals for sleep: Felipe to sleep in his own bed. Felipe to sleep until morning (7am) Felipe to go to sleep at 9pm. I will go to sleep at 10:30pm. I will get at least 7 hours of sleep. I will sleep thought out the night too.
Film on Felipe going up the stairs coming soon...as soon as I figure out how to post it on blog.
His cousin, 2 years old, and Felipe had a long conversation at my mother's birthday party. What about? who knows?! but they seemed to understand each other. It started after Felipe saw his cousin's toy. It seemed liked Felipe asked to play with it. and his cousin said "No, Mine" He speaks very clearly and was obvious that he did not want to share. However, Felipe continued with "bah ag go go ago" and other variations of words that seemed to lay out Felipe's argument for why he should have a chance to play with the toy. Hilarious!! In the end, the two little chatterboxes were great entertainment for the adults who watched them in suspense on how this little conversation would end. I was nervous Felipe would take a huge bite out of his cousin as he does with me. Instead, his cousin very sweetly placed the toy in front of Felipe pointed to it and said "that's baby's toy" and then let him play with it for a fraction of a second before it became his again. He is such a sweet boy for being 2, that was an enormously sweet gesture.
Another week of services and appointments. Felipe woke up on Monday morning (2am) with a high fever. It has been managed with Tylenol and Motrin and now it is a low fever, that seems to come back after 6 hrs of his medication running out. So Felipe is a little cranky and needy. We canceled his gym time on monday but kept his other appointments. However when the SI arrived he had enough energy to say hi, blow some bubbled and then fell asleep mid activity.
With the SI we reviewed from techniques for Felipe to sleep on his own and to create self soothing. He seems to enjoy all the time with the therapist. I was sad he didn't get to spend time with her but at least the SI and I caught up on various goals and expectations for Felipe. She thinks he is very bright and willing to learn.
This weekend over all has been hard for the family health wise. I haven't slept in days, mostly bc Felipe wasn't feeling well and I get up at every little noise that he makes. I'm settle my goals for sleep: Felipe to sleep in his own bed. Felipe to sleep until morning (7am) Felipe to go to sleep at 9pm. I will go to sleep at 10:30pm. I will get at least 7 hours of sleep. I will sleep thought out the night too.
Film on Felipe going up the stairs coming soon...as soon as I figure out how to post it on blog.
Its a PLANE!!!! and other guessing games...
Felipe has been trying to saw more words, they just come out a little garbled and it ends up being a guessing game.
"ane" = Airplane
"Ba"= anything round, maybe milk, maybe bottle, maybe water
he has a slight variation of "bah" which seems like he is asking a question...I'm thinking this is attempt at AQUA...water. its one of the few words he is getting in spanish.
I really had my heart on teaching him spanish while he was growing up. However with so much going on in his life, I am slowly accepting that it might be best to wait until he isn't in a thousand services for his development.
Felipe is cranky during physical therapy, he is teething so between being frustrated that he can't communicate, getting mad and wanting to bit down on things, Mami is severally covered with bites :(
in other news, Felipe tried watermelon for the first time yesterday, he loved it! Watermelon has so many memories for me...growing up with my bro and cousin, having competitions of who could eat the most watermelon, or who could sort out the seeds faster, etc. all fun times.
"ane" = Airplane
"Ba"= anything round, maybe milk, maybe bottle, maybe water
he has a slight variation of "bah" which seems like he is asking a question...I'm thinking this is attempt at AQUA...water. its one of the few words he is getting in spanish.
I really had my heart on teaching him spanish while he was growing up. However with so much going on in his life, I am slowly accepting that it might be best to wait until he isn't in a thousand services for his development.
Felipe is cranky during physical therapy, he is teething so between being frustrated that he can't communicate, getting mad and wanting to bit down on things, Mami is severally covered with bites :(
in other news, Felipe tried watermelon for the first time yesterday, he loved it! Watermelon has so many memories for me...growing up with my bro and cousin, having competitions of who could eat the most watermelon, or who could sort out the seeds faster, etc. all fun times.
Tuesday, 5 August 2014
Hip Update!
Felipe met with Ortho yesterday and while the doctor feels that the hips are displaced, they are in a similar position as before. So nothing urgent needs to be done to address the situation. the next step is to take X-Rays of his hips and create a long term plan. Options remain the same, hip surgery, or continue to wait and see.
Waiting and seeing how things develop is very difficult but I would rather wait and find out that he doesn't need surgery. I am grateful that he is not in any pain or discomfort. And despite the hectic schedule yesterday he was in a playful mood with the doctor.
Yesterday we had physical therapy at the gym, Felipe walked side to side while holding on to a work bench and he was getting faster and faster during the session. The gym PT is happy with the progress. And while Felipe tired to take too big of a step a couple of times, and freaked himself out, he for the most part had fun. give him a car, and move it to the opposite side of a workbench, seems like torture to me, but he did it with a smile.
After the gym, we came home and had speech therapy and special instruction. ST has reminded me to reinforce the words that he is saying. I'm starting to keep a running list on the fridge for the day, that way I can remind myself what he has said and to reinforce it too. the special instructor was impressed with his behavior despite having a lot of things scheduled. She noted that he likes to rush through things and at times skips the steps while in play (put ball down, hit with hammer, he tried to just hit the ball w his hands, he gets impatient). She suggested ways to get him to continue on his steps, prompts and gesturing a lot. The 30 minutes seem to fly by, she has awesome toys.
Both the ST and SI are both impressed that Felipe got services at all. He is very bright and is cooperative with the instructors. They couldn't believe that he got 2 sessions of 30 minutes of ST bc really he is on the cusp of qualifying. I think the approval was a result of my first appeal of the PT. They denied me 5 times a day, and I immediately appealed. I fought for it till we got it a few weeks later, even before it reached mediation. I think the person who approves the services knows I will appeal, I will advocate. While I am grateful for the personal connections, friends and coworkers at legal aid who helped me with the process, I am still furious to know that parents are routinely intimated by phone calls from "head honchos" in the early intervention program, who claim to be experts on children. Especially peeves that often these decisions to approve or not approve are based on "guesstimates" with no consultations with doctors, therapist or the child's medical providers. I had all my ducks in a row, all the providers wrote me letters, all the providers were willing to be available by phone during the mediation, I had a witness list. I am grateful for my training as a paralegal and as an attorney and keeping my self centered through prayer and prayers of my friends and family.
Today, another busy day, Speech and then physical therapy. ST went well, he got really annoyed at her for not giving him the toy. She won't give it to him unless he points or tries to say mine or more. She didn't address the frustration, just applauded him when he did what she asked for. I will try to replicate this, even when he is biting, just keep it moving. its so hard sometimes, especially now that he is getting his incisors, geez! ST things he might have a sensory thing related to the biting, he likes it as tension relief. She is going to get him a specialized "biter" that she uses for kids with feeding issues. Felipe also doesn't try to eat crispy foods like crackers/toast. She thinks this will help with that as well. I'm going to find him a vibrating toothbrush too, in the hopes it will relieve some of that desire to bit mami or papi. (although I do find it funny when he bites Hubby....LOL....at least it isn't me and Herminio yells so loudly...sorry hunny)
After such a hard and sweaty workout, Felipe fell asleep for 2 hours, sleeping beauty is waking up...gotta run.
Waiting and seeing how things develop is very difficult but I would rather wait and find out that he doesn't need surgery. I am grateful that he is not in any pain or discomfort. And despite the hectic schedule yesterday he was in a playful mood with the doctor.
Yesterday we had physical therapy at the gym, Felipe walked side to side while holding on to a work bench and he was getting faster and faster during the session. The gym PT is happy with the progress. And while Felipe tired to take too big of a step a couple of times, and freaked himself out, he for the most part had fun. give him a car, and move it to the opposite side of a workbench, seems like torture to me, but he did it with a smile.
After the gym, we came home and had speech therapy and special instruction. ST has reminded me to reinforce the words that he is saying. I'm starting to keep a running list on the fridge for the day, that way I can remind myself what he has said and to reinforce it too. the special instructor was impressed with his behavior despite having a lot of things scheduled. She noted that he likes to rush through things and at times skips the steps while in play (put ball down, hit with hammer, he tried to just hit the ball w his hands, he gets impatient). She suggested ways to get him to continue on his steps, prompts and gesturing a lot. The 30 minutes seem to fly by, she has awesome toys.
Both the ST and SI are both impressed that Felipe got services at all. He is very bright and is cooperative with the instructors. They couldn't believe that he got 2 sessions of 30 minutes of ST bc really he is on the cusp of qualifying. I think the approval was a result of my first appeal of the PT. They denied me 5 times a day, and I immediately appealed. I fought for it till we got it a few weeks later, even before it reached mediation. I think the person who approves the services knows I will appeal, I will advocate. While I am grateful for the personal connections, friends and coworkers at legal aid who helped me with the process, I am still furious to know that parents are routinely intimated by phone calls from "head honchos" in the early intervention program, who claim to be experts on children. Especially peeves that often these decisions to approve or not approve are based on "guesstimates" with no consultations with doctors, therapist or the child's medical providers. I had all my ducks in a row, all the providers wrote me letters, all the providers were willing to be available by phone during the mediation, I had a witness list. I am grateful for my training as a paralegal and as an attorney and keeping my self centered through prayer and prayers of my friends and family.
Today, another busy day, Speech and then physical therapy. ST went well, he got really annoyed at her for not giving him the toy. She won't give it to him unless he points or tries to say mine or more. She didn't address the frustration, just applauded him when he did what she asked for. I will try to replicate this, even when he is biting, just keep it moving. its so hard sometimes, especially now that he is getting his incisors, geez! ST things he might have a sensory thing related to the biting, he likes it as tension relief. She is going to get him a specialized "biter" that she uses for kids with feeding issues. Felipe also doesn't try to eat crispy foods like crackers/toast. She thinks this will help with that as well. I'm going to find him a vibrating toothbrush too, in the hopes it will relieve some of that desire to bit mami or papi. (although I do find it funny when he bites Hubby....LOL....at least it isn't me and Herminio yells so loudly...sorry hunny)
After such a hard and sweaty workout, Felipe fell asleep for 2 hours, sleeping beauty is waking up...gotta run.
Subscribe to:
Posts (Atom)