...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.
Friday 1 August 2014
Playtime is important
My friend from high school was in town (she lives now in ATL) and we set up a little play date between her sons 7 and 2.5, and Felipe. I made sure that Felipe napped and was well fed so that he could be in his best mood! Felipe, due in large part to his schedule doesn't get to hang out with children. We are usually running around from appointment to appointment. I signed up to Meetup.com in the hopes to find a play group for him so he can socialize with other kids.
As to be expected, Felipe was shy and clung to me once we walked into the apartment. He later became curious of her oldest, following him around and just starting at him. And when the 2 1/2 woke up from his nap, Felipe was chasing him around. There were some attempts to catch him but it looked liked he was trying to hit him. He doesn't know yet his own strength or even sense of pain he causes when he hits people. I had to separate him out a couple of times but overall the visit when well and the boys seemed to have fun together.
After seeing him get adjusted to the new environment and having fun with the boys, I am more determined to find a play group. It might even have to be a "working parents" group....I hope they don't find out, I'm not working!!!! Looking at Felipe meet new kids and slowly warm up to them, I realize that I'm staying away from playgroups in large part bc the nervousness I feel about meeting new people. Especially parents! I can make friends, maintain them and love the ones I have now, I get nervous meeting new people. Felipe was acting age appropriate, being tentative, observing and then jumping right in to play with them. I'm glad that he showed that boldness and confidence. Parents are particularly unnerving bc there are some can compare your kid to theirs, make things into a competition, and give unsolicited advice. With my friends who are parents, I know them well and I know they intent that I and Felipe are happy and healthy. And they are all aware of my schedule so there is an added level of compassion. In the end, its up to me to keep other people's commends in perspective and my own REACTION in check. So, creating a new search for playgroups immediately. (definitely after Monday)
Friday August 1, we have another busy schedule lined up. We have to move the car on the alternative side parking, drive to the gym for his therapy. Pick up laundry on the way back and stop at the store to pick up some fresh herbs and onions for soup. Get back and wait for the physical therapist that comes to the home. He took 2 days off for religious holiday and now he makes up the time on Friday. Yesterday, Felipe cried throughout the whole session. It was a workout for him. Felipe was covered in sweat after it!! The PT had asked me to purchase high top boots. A tall order in the middle of summer, but I was able to find a pair. He was able to stretch and place his foot in the boot, without the braces and have him take several steps. EXCITING!!!! I'm hoping to capture his few steps today in his boots during PT.
Off to get Felipe ready for the day....
As to be expected, Felipe was shy and clung to me once we walked into the apartment. He later became curious of her oldest, following him around and just starting at him. And when the 2 1/2 woke up from his nap, Felipe was chasing him around. There were some attempts to catch him but it looked liked he was trying to hit him. He doesn't know yet his own strength or even sense of pain he causes when he hits people. I had to separate him out a couple of times but overall the visit when well and the boys seemed to have fun together.
After seeing him get adjusted to the new environment and having fun with the boys, I am more determined to find a play group. It might even have to be a "working parents" group....I hope they don't find out, I'm not working!!!! Looking at Felipe meet new kids and slowly warm up to them, I realize that I'm staying away from playgroups in large part bc the nervousness I feel about meeting new people. Especially parents! I can make friends, maintain them and love the ones I have now, I get nervous meeting new people. Felipe was acting age appropriate, being tentative, observing and then jumping right in to play with them. I'm glad that he showed that boldness and confidence. Parents are particularly unnerving bc there are some can compare your kid to theirs, make things into a competition, and give unsolicited advice. With my friends who are parents, I know them well and I know they intent that I and Felipe are happy and healthy. And they are all aware of my schedule so there is an added level of compassion. In the end, its up to me to keep other people's commends in perspective and my own REACTION in check. So, creating a new search for playgroups immediately. (definitely after Monday)
Friday August 1, we have another busy schedule lined up. We have to move the car on the alternative side parking, drive to the gym for his therapy. Pick up laundry on the way back and stop at the store to pick up some fresh herbs and onions for soup. Get back and wait for the physical therapist that comes to the home. He took 2 days off for religious holiday and now he makes up the time on Friday. Yesterday, Felipe cried throughout the whole session. It was a workout for him. Felipe was covered in sweat after it!! The PT had asked me to purchase high top boots. A tall order in the middle of summer, but I was able to find a pair. He was able to stretch and place his foot in the boot, without the braces and have him take several steps. EXCITING!!!! I'm hoping to capture his few steps today in his boots during PT.
Off to get Felipe ready for the day....
Thursday 31 July 2014
Hips Hips Hips...
Felipe saw his pediatrician on Tuesday. Overall he is doing great and she was delighted to see that the new therapy technique has yielded such great and speedy results. He is at 50% weight and 60% hieght for a child his age. During the physical, the doctor checked to see how his hips were doing. Prior to Janurary, she had not felt any difference in his hips. The Ortho at Mt Sinani came for a consult during his week long stay there and she was the one who noted that he had a very slight (and couldn't be seen by regular physical) hip displacement. Reviewing the X ray she determined both hips were displaced by 30%. The new ortho, at Hospital for Special Surgery seemed to agree that the displacement is very minor and might even be considered normal for his age. So basically, we were to monitor the hips with X rays in September.
This physical exam, the doctor said she could feel the hip, the left one, coming in and out of the socket. Not a good sign. Felipe was not in any discomfort or any pain. She was concerned that it was something she began to feel, whereas a few months ago, it was barely noticeable that she couldn't identify it. She asked if I could call the Ortho and schedule an earlier appointment. The PT at home had also made a comment about his hips, his concerns that Felipe hasn't kept weight on his left leg for long. Thinking that September wasn't too far away, he thought it would be ok to wait till then.
Spoke with Ortho's secretary and nurse, they recommend him to come into the office immediately. Felipe has an appointment with Ortho on Monday at 9am. He will most likely get a physical and an Xray to see whether the hips have gotten worse. Again, this all is a domino effect from not being able to bare weight on his legs bc of his feet. If there is no weight baring on his legs, his hip sockets do not form deep groves. If there are no deep groves, the hips remain with a very little arch and can cause hips to get frequently dislocated. Surgery would be required to make the grooves deeper.
Praying that we have a solution and a plan for Felipe's overall physical therapy and rehabilitation by Monday. Since we have to go see Ortho we will have to cancel the Monday appointment at the gym, and depending when we get out of the appointment, possibly the speech and special instructor appointment.
Its a bit disheartening to hear that hip surgery is a possibility. So far he has been making such great progress and I don't want that to end or be derailed due to recovering from another surgery. And I was getting used to not being in a hospital environment for long period of time. Being away from home and by Felipe's bedside was very exhausting and not the greatest for my health. I ate whatever was available and usually ordered comfort food. I'm also making strides in being healthier and don't want to be derailed by more stress. However, stress is inevitable and so I'll have to take it as a challenge to be better even under the stressful circumstances.
In December, while I was in a particular funk with all the stress of trying to settle back from the rehab center, coordinating the services to come into the home, and trying to find an answer to his drop foot, I spent a lot of my time watching TV. They say its like "chewing gum for the eyes" but really for me it was my escape. And what better way to escape the stress of life by binge watching episodes of CHUCK on Netflix. CHUCK is this comedy/action series about a dorky, college drop out who unwillingly becomes the holder of information for the CIA and he has to become a semi-spy while the try to get the info back from him. Its a comedy bc he is so dorky, untrained spy and all the messes he gets into. But I mention CHUCK bc in the series he has a brother in law who he lives with, Captain Awesome. He has a real name but everyone calls him Captain Awesome. He got that name bc he does everything well. He is friendly, he is an outdoor adventurer, he is an avid biker, traveler, etc, and during the day he is a doctor. He is the boyfriend of chuck's sister who he lives with and the comedy surrounds it all bc they don't know that Chuck is a semi-spy and all the ridiculous things that Chuck has to cover up before he blows his cover.
Anyway, a long detailed explanation of my own moment of realizing that I would love Felipe to be his own version of Captain Awesome. Be physically fit, travel, be daring in life, intelligent, and kind. The whole physically fit part was in question for now, can he do contact sports? can run? can he walk? And Felipe's progress had given me hope in the direction of a "yes!" I will continue to pray for that hope and healing. However, even if he is healed, Felipe's "Captain Awesomeness" needs to have an example of "awesomeness" from his parents. I haven't been on a bike in years, why do I think he is going to be biking to and from work? biking along the mountains of the alps? biking on the trails before going camping?! lol So despite the usual waste of time TV watching can be, especially watching over 90 episodes of a series, this show pointed me in the direction of getting healthier and more adventurous so that I can be an example for Felipe. While Felipe is going through his rehabilitation of learning to walk, then I will learn to be more "awesome."
I'm determined to start with a bike. Getting a bike and getting a little baby seat for Felipe to have a front view and experience the joy of wind in his hair. While its a goal right now, I'm without a bike, helmet, baby seat or space to put said bike. However, as God has provided me while being out on leave, if its adventure worth beginning, things will sort themselves out. I have faith :)
Here is to being Awesome despite not always having awesome news.....ciao ciao
This physical exam, the doctor said she could feel the hip, the left one, coming in and out of the socket. Not a good sign. Felipe was not in any discomfort or any pain. She was concerned that it was something she began to feel, whereas a few months ago, it was barely noticeable that she couldn't identify it. She asked if I could call the Ortho and schedule an earlier appointment. The PT at home had also made a comment about his hips, his concerns that Felipe hasn't kept weight on his left leg for long. Thinking that September wasn't too far away, he thought it would be ok to wait till then.
Spoke with Ortho's secretary and nurse, they recommend him to come into the office immediately. Felipe has an appointment with Ortho on Monday at 9am. He will most likely get a physical and an Xray to see whether the hips have gotten worse. Again, this all is a domino effect from not being able to bare weight on his legs bc of his feet. If there is no weight baring on his legs, his hip sockets do not form deep groves. If there are no deep groves, the hips remain with a very little arch and can cause hips to get frequently dislocated. Surgery would be required to make the grooves deeper.
Praying that we have a solution and a plan for Felipe's overall physical therapy and rehabilitation by Monday. Since we have to go see Ortho we will have to cancel the Monday appointment at the gym, and depending when we get out of the appointment, possibly the speech and special instructor appointment.
Its a bit disheartening to hear that hip surgery is a possibility. So far he has been making such great progress and I don't want that to end or be derailed due to recovering from another surgery. And I was getting used to not being in a hospital environment for long period of time. Being away from home and by Felipe's bedside was very exhausting and not the greatest for my health. I ate whatever was available and usually ordered comfort food. I'm also making strides in being healthier and don't want to be derailed by more stress. However, stress is inevitable and so I'll have to take it as a challenge to be better even under the stressful circumstances.
In December, while I was in a particular funk with all the stress of trying to settle back from the rehab center, coordinating the services to come into the home, and trying to find an answer to his drop foot, I spent a lot of my time watching TV. They say its like "chewing gum for the eyes" but really for me it was my escape. And what better way to escape the stress of life by binge watching episodes of CHUCK on Netflix. CHUCK is this comedy/action series about a dorky, college drop out who unwillingly becomes the holder of information for the CIA and he has to become a semi-spy while the try to get the info back from him. Its a comedy bc he is so dorky, untrained spy and all the messes he gets into. But I mention CHUCK bc in the series he has a brother in law who he lives with, Captain Awesome. He has a real name but everyone calls him Captain Awesome. He got that name bc he does everything well. He is friendly, he is an outdoor adventurer, he is an avid biker, traveler, etc, and during the day he is a doctor. He is the boyfriend of chuck's sister who he lives with and the comedy surrounds it all bc they don't know that Chuck is a semi-spy and all the ridiculous things that Chuck has to cover up before he blows his cover.
Anyway, a long detailed explanation of my own moment of realizing that I would love Felipe to be his own version of Captain Awesome. Be physically fit, travel, be daring in life, intelligent, and kind. The whole physically fit part was in question for now, can he do contact sports? can run? can he walk? And Felipe's progress had given me hope in the direction of a "yes!" I will continue to pray for that hope and healing. However, even if he is healed, Felipe's "Captain Awesomeness" needs to have an example of "awesomeness" from his parents. I haven't been on a bike in years, why do I think he is going to be biking to and from work? biking along the mountains of the alps? biking on the trails before going camping?! lol So despite the usual waste of time TV watching can be, especially watching over 90 episodes of a series, this show pointed me in the direction of getting healthier and more adventurous so that I can be an example for Felipe. While Felipe is going through his rehabilitation of learning to walk, then I will learn to be more "awesome."
I'm determined to start with a bike. Getting a bike and getting a little baby seat for Felipe to have a front view and experience the joy of wind in his hair. While its a goal right now, I'm without a bike, helmet, baby seat or space to put said bike. However, as God has provided me while being out on leave, if its adventure worth beginning, things will sort themselves out. I have faith :)
Here is to being Awesome despite not always having awesome news.....ciao ciao
Wednesday 30 July 2014
Sleepy Baby...
Felipe did not nap yesterday, which was pretty difficult considering that I was sick and I didn't have the same energy as I usually do. Once Herminio came home, he cuddled up to him and passed out. Out like a light, no fair!
Needless to say, I didn't get a chance to rest or recover from a bad summer cold.
Its important for Felipe to sleep, it will help him recover, get stronger, etc. Also, I would like to have at least 30 minutes to do some house hold chores, workout, or cook. I started a food and exercise program in May, where the emphasis is to make sure the food is "clean" or in other words unprocessed and fresh. I've started to make bulk food days, cooking a lot, packaging the food for Herminio to take to work and for me and Felipe to have during the day. This has helped in cutting back in the amount of time I have to spend in the kitchen on at least 3 days. Bring food from home has significantly helped reduce extra costs in the home as well! The added benefit is that both Herminio and I have lost weight, gained some additional energy and we are setting a better example for Felipe.
Felipe doesn't have to loose weight but he needs to learn to like the healthy food now, and not struggle like myself, learning to like veggies. I'm proud to say that Felipe really enjoys his asparagus, broccoli and beans. Although lately he loves his grapes and blueberries. He is particular about his Yogurt, he likes Greek Yogurt either Chobani or Face but it has to be with fruit on the bottom. While I know that plain yogurt is healthier, I haven't developed the taste for it yet. I aim to phase out the fruit-at-the-bottom yogurt and replace it with fresh fruit w plain yogurt. Slow and steady....
The acupuncturist has suggested to remove all milk products. For now, Felipe is trying out milk alternatives. He has tried Almond Milk, Rice Milk and Coconut milk. He likes them all but not as much as regular whole milk. We are still working on getting Felipe to drink out of a cup for the majority of his liquids. Felipe has seen me drinking water from a bottle and so he just wants to drink out of the bottle. Sometimes this results in impromptu baths by Felipe, spilling so much water on himself. Same goes with the yogurt, but slowly, he is getting more coordinated.
Needless to say, I didn't get a chance to rest or recover from a bad summer cold.
Its important for Felipe to sleep, it will help him recover, get stronger, etc. Also, I would like to have at least 30 minutes to do some house hold chores, workout, or cook. I started a food and exercise program in May, where the emphasis is to make sure the food is "clean" or in other words unprocessed and fresh. I've started to make bulk food days, cooking a lot, packaging the food for Herminio to take to work and for me and Felipe to have during the day. This has helped in cutting back in the amount of time I have to spend in the kitchen on at least 3 days. Bring food from home has significantly helped reduce extra costs in the home as well! The added benefit is that both Herminio and I have lost weight, gained some additional energy and we are setting a better example for Felipe.
Felipe doesn't have to loose weight but he needs to learn to like the healthy food now, and not struggle like myself, learning to like veggies. I'm proud to say that Felipe really enjoys his asparagus, broccoli and beans. Although lately he loves his grapes and blueberries. He is particular about his Yogurt, he likes Greek Yogurt either Chobani or Face but it has to be with fruit on the bottom. While I know that plain yogurt is healthier, I haven't developed the taste for it yet. I aim to phase out the fruit-at-the-bottom yogurt and replace it with fresh fruit w plain yogurt. Slow and steady....
The acupuncturist has suggested to remove all milk products. For now, Felipe is trying out milk alternatives. He has tried Almond Milk, Rice Milk and Coconut milk. He likes them all but not as much as regular whole milk. We are still working on getting Felipe to drink out of a cup for the majority of his liquids. Felipe has seen me drinking water from a bottle and so he just wants to drink out of the bottle. Sometimes this results in impromptu baths by Felipe, spilling so much water on himself. Same goes with the yogurt, but slowly, he is getting more coordinated.
Tuesday 29 July 2014
1st Sessions with Speech Therapist and Special Instructor
Special Instructor (SI) is a very sweet and caring woman who has been working with children for over 30 years. She is has two masters and a PHD in the area of special education. Her role is to help Felipe learn how to play, expand his attention span, and help with his behavioral problems. I will be pleased when he doesn't treat me like his personal chew toy. The first session, she reviewed the importance of getting toys that require multiple steps, like pop up toys. It will keep him engaged and it will require him to take the time to figure out the steps and repeat the actions. Felipe had fun. I'm not sure what the long term outcome will be, but I'm willing to try!
Speech Therapist has also been working with kids for a long time. She speaks pretty fast and has a lot of intonation in her voice. Felipe has been saying some words, like car. He points to every moving object and says Car. The ST says to say, yes a "car", yea, its a truck" to reinforce that I heard him say car, and then teach him the appropriate word. He calls balls and grapes that same, "ba" So she said, to say, "ba? yes Grapes GRRRR APES." She said to avoid conversations, keeping sentences short and repetitive. She had a luggage full of toys, I gotta admit, I'm not sure who was more curious about her toys Felipe or me! She had a mic and she would say a word and pass the mic to Felipe. He was shy at first, but he tried once or twice to mimic the words she was saying. She also suggested to place two items in front of him and help him make a "pointer finger" to indicate which one he wants. Then repeat the item that he selected. The idea is that he practice pointing at objects when he wants them. Right now he points in a general vicinity but its largely guessing on my part to find out what he means. He enjoyed playing with her and the 30 minute session flew by!
So exercises to do on our own this week:
1. Find toys that require multiple steps, easy puzzles and a mic
2. Reinforce words that Felipe has begun to use for general items, "ba-ball-grapes" etc.
3. Sing with gestures Twinkle twinkle little star while in high chair during meals.
Speech Therapist has also been working with kids for a long time. She speaks pretty fast and has a lot of intonation in her voice. Felipe has been saying some words, like car. He points to every moving object and says Car. The ST says to say, yes a "car", yea, its a truck" to reinforce that I heard him say car, and then teach him the appropriate word. He calls balls and grapes that same, "ba" So she said, to say, "ba? yes Grapes GRRRR APES." She said to avoid conversations, keeping sentences short and repetitive. She had a luggage full of toys, I gotta admit, I'm not sure who was more curious about her toys Felipe or me! She had a mic and she would say a word and pass the mic to Felipe. He was shy at first, but he tried once or twice to mimic the words she was saying. She also suggested to place two items in front of him and help him make a "pointer finger" to indicate which one he wants. Then repeat the item that he selected. The idea is that he practice pointing at objects when he wants them. Right now he points in a general vicinity but its largely guessing on my part to find out what he means. He enjoyed playing with her and the 30 minute session flew by!
So exercises to do on our own this week:
1. Find toys that require multiple steps, easy puzzles and a mic
2. Reinforce words that Felipe has begun to use for general items, "ba-ball-grapes" etc.
3. Sing with gestures Twinkle twinkle little star while in high chair during meals.
Time Flies....
....I haven't updated this blog in a while partially due to the progress that Felipe has been making. Felipe's new therapist is using the Cuevas Medeck Exercises to building up muscles and improve his ability to hold himself up. The first 2 weeks, he cried throughout every session. It was hard to witness but the results were almost immediate. Felipe began to hold his chest up, more upright, he began to feel more confident in kneel walking. Kneel walking is key bc it uses all the muscles to walk and it also means he is bearing his weight on his hips. Felipe still going to the gym on Monday and Fridays and during this time is when we could really guage the difference in performance. He is holding himself up with the braces, he is taking side steps to explore his space.
While we are making progress in one area, we are slowing loosing control in the area of behavior. He is biting more, he is smacking and even once tried to kick me away. (I have to say I didn't mind the kick, bc it is showing a sign of strength where he used to be weak). I submitted a request for evaluations. They evaluated him for Speech (ST) and Special Instruction (SI). The evaluators both suggested Occupational (OT) evaluation so that they can rule out any sensory issues.
He qualified for ST, he is speaking more at an 10-12month old level. He also qualified for SI, he has behavioral issues that could stem from not being able to communicate and also from the trauma of so many hospitalizations/pain. There was a few weeks wait as the evaluations, reports and paperwork were submitted. However he was approved for ST 2x a week and SI 1x a week. He was denied OT bc the evaluator thought that his fine motor skills were above average. (he throws objects like no other! and has good aim has he frequently bopped the evaluater on the head w the toys). However, after speaking w the PT, he thinks that Felipe should be receiving OT due to his upper body weakness. We will ask for a reassessment in a few months.
At first I was annoyed that the PT withheld his opinion on the OT until after the rejection but realistically he is boarderline weak at his age group. So there is still the possibility of being rejected. Additionally, Felipe now has 2 additional services to coordinate and having a little time before another one is scheduled might be a good thing.
So we are folling up with accupunture every 2 weeks, just to make sure that he is doing well in terms of his digestion and to see if any improvements have been made. I think it has been useful for him and in combination with the new physical therapy style, Felipe has improved significantly.
As for his kidney and other development, his appointment has been rescheduled to later in August, so we can gather the baseline results at that time.
I"ll schedule in some time to update more frequently. Next steps are to 1) find an OT that is covered by his health insurance and 2) schedule an appointment with Ortho sooner to reevaluate his hips and what needs to be done.
Until then, thank you for support and prayers.
God Bless
While we are making progress in one area, we are slowing loosing control in the area of behavior. He is biting more, he is smacking and even once tried to kick me away. (I have to say I didn't mind the kick, bc it is showing a sign of strength where he used to be weak). I submitted a request for evaluations. They evaluated him for Speech (ST) and Special Instruction (SI). The evaluators both suggested Occupational (OT) evaluation so that they can rule out any sensory issues.
He qualified for ST, he is speaking more at an 10-12month old level. He also qualified for SI, he has behavioral issues that could stem from not being able to communicate and also from the trauma of so many hospitalizations/pain. There was a few weeks wait as the evaluations, reports and paperwork were submitted. However he was approved for ST 2x a week and SI 1x a week. He was denied OT bc the evaluator thought that his fine motor skills were above average. (he throws objects like no other! and has good aim has he frequently bopped the evaluater on the head w the toys). However, after speaking w the PT, he thinks that Felipe should be receiving OT due to his upper body weakness. We will ask for a reassessment in a few months.
At first I was annoyed that the PT withheld his opinion on the OT until after the rejection but realistically he is boarderline weak at his age group. So there is still the possibility of being rejected. Additionally, Felipe now has 2 additional services to coordinate and having a little time before another one is scheduled might be a good thing.
So we are folling up with accupunture every 2 weeks, just to make sure that he is doing well in terms of his digestion and to see if any improvements have been made. I think it has been useful for him and in combination with the new physical therapy style, Felipe has improved significantly.
As for his kidney and other development, his appointment has been rescheduled to later in August, so we can gather the baseline results at that time.
I"ll schedule in some time to update more frequently. Next steps are to 1) find an OT that is covered by his health insurance and 2) schedule an appointment with Ortho sooner to reevaluate his hips and what needs to be done.
Until then, thank you for support and prayers.
God Bless
Saturday 7 June 2014
6 month review
Its hard to believe that 6 months has passed since we started with Early Intervention. This past week we had the 6 month review. There is some progress but there is still so much for him to learn. They will continue the mandate for 5 times a week. I've asked for Felipe to be evaluated for Speech therapy. He doesn't talk more than "mama" or "oohoh" and I rather just double check than later find out that he needed it all along. He understands very well, and follows my commands but he begins to bit when he gets frustrated or starts to grunt. Its unclear if its also just residual feelings or unexpressed feelings from being in the hospital, not having his pain managed for over two days, the frequent doctor visits, etc. etc. So the service coordinator will request a behavioral specialist to see how he is doing.
At Felipe's age, the therapist can recommend play therapy. A way for him to play and also to express his feelings of frustration with a person to guide him on how to express it without biting. Biting is also a very normal part of growth so it can just be, that he wanted to bite. Who knows. At Felipe's age he is supposed to be saying about 15 words. He doesn't. His receptive skills are very good, very bright. Which is the reason I've delayed requesting an evaluation for so long. I figured that EI would reject his need for speech services since he can understand what is being said to him. EI is less concerned that he isn't talking yet. So I'm guessing at 16 months, they expect him to speak more and perhaps its enjoy of a delay to approve him in speech.
I have to look into my alternatives for speech. I think the insurance might cover some sessions with a therapist, at the very least 20 sessions. I'l have to call the insurance company and find out. meanwhile, we continue with our routine of reading Felipe books while he is in the standard, repeating words to object that he points to, and removing the pacifier and allowing it only for naps.
The service coordinator also began the search for the new therapist. And if Felipe does well with that person, I might have them switch it to 5 times a week w the same therapist. The gym situation has got me annoyed. It doesn't seem to be a productive time.
At Felipe's age, the therapist can recommend play therapy. A way for him to play and also to express his feelings of frustration with a person to guide him on how to express it without biting. Biting is also a very normal part of growth so it can just be, that he wanted to bite. Who knows. At Felipe's age he is supposed to be saying about 15 words. He doesn't. His receptive skills are very good, very bright. Which is the reason I've delayed requesting an evaluation for so long. I figured that EI would reject his need for speech services since he can understand what is being said to him. EI is less concerned that he isn't talking yet. So I'm guessing at 16 months, they expect him to speak more and perhaps its enjoy of a delay to approve him in speech.
I have to look into my alternatives for speech. I think the insurance might cover some sessions with a therapist, at the very least 20 sessions. I'l have to call the insurance company and find out. meanwhile, we continue with our routine of reading Felipe books while he is in the standard, repeating words to object that he points to, and removing the pacifier and allowing it only for naps.
The service coordinator also began the search for the new therapist. And if Felipe does well with that person, I might have them switch it to 5 times a week w the same therapist. The gym situation has got me annoyed. It doesn't seem to be a productive time.
Wednesday 4 June 2014
The search begins...
The physical therapist, that comes to the house, has cancelled on me twice this week. I need to get a new one. I get things are going on for her family, but I need to have someone come and help felipe with his exercises
We took today to explore a local garden/museum. He sat on the grass for the first time. He was curious and excited about the dirt, but mostly wanted to bark at the birds. He saw some children playing but he didn't really put much importance to them walking and him crawling. He stood by the tree and benches and overall seemed happy to break the same routine, over and over again.
To do:
!) new therapist.
2) sleep
We took today to explore a local garden/museum. He sat on the grass for the first time. He was curious and excited about the dirt, but mostly wanted to bark at the birds. He saw some children playing but he didn't really put much importance to them walking and him crawling. He stood by the tree and benches and overall seemed happy to break the same routine, over and over again.
To do:
!) new therapist.
2) sleep
Saturday 31 May 2014
Sleeping Felipe
Possibly due to the antibiotics and his body need to heal he has been sleeping a lot. Last night he went to sleep around 7pm. Poor little one nodded off during Jeopardy. He woke up briefly to get his medication and then fell asleep again. He woke up at 10am!! that's pretty late. he fell back asleep at 2pm and has been sleeping since.
I have modified his workout since he is asleep or on the verge of falling asleep these past few days. I'm stretching him more, giving more massages and trying to get him in his braces and ready to stand for all his meals. So far, limited success on the time in the stander. He stood only for 60 mins yesterday. Today, we haven't gotten him in at all! I have to account for some days will not be as productive but with the sense of urgency that I feel now a days, its hard not to freak out.
Praying for Felipe's healthy recovery!
Friday 30 May 2014
Never mess with Naptime!
Oh Felipe!
Felipe is now at the phase where he likes to push the limit of when he will fall asleep. He usually naps around 3-4pm but yesterday he refused to go to sleep. A friend was over and he couldn't pass up the opportunity to play with someone else aside from mami. So instead, he played till he passed out, against his will. Unfortunately, he was awoken a few minutes into his nap by the sound of the door bell. The physical therapist had arrived and it was time for therapy.
Felipe was not having it. He cried and cried and cried. Unfortunately, it was the most unproductive session we have ever had. The theratogs had arrived and they first need to be measured to fit him perfectly. The vest portion seems to be about 5 inches too big while the leg portions seem to fit well. I hesitate from cutting anything especially since its so costly. I'll leave it to the physical therapist to decide that. Nothing was properly measured bc Felipe was refusing to stand or situp. He was demonstrating his great imitation of a worm, full body weight to the floor and squirmed away from mami and she tried to redirect him.
Theratogs have to be worn for 30-45 minutes at a time for 2-3 times a week. The PT said that was the minimal amount but at optimum useage, they can be worn for 30 minutes every day. The time spent in them can't exceed 30 minutes. Feeling the material, I'm not sure that Felipe during the summer month can really tolerate it for 30 minutes. The theratog material is sort of like a wetsuit material or similar to those "loose weight quick" blue sweat producing bands that they sell for the tummy area. The idea behind it is that one side of the theratog has a material that pulls the skin or sends a sensory response to the skin. Because there is friction in putting on the material, when Felipe walks or crawls, the material will pull his skin in the direction it should be. It start to feel uncomfortable to be in the incorrect sitting or crawling position. Theratogs are similar to the idea of the kinetic tape that was tired with Felipe is HSS. Although no tape to painfully remove--that stuff had some crazy adhesive material.
Today we have the PT at the gym. I have the suspicion that all of Felipe's recent colds and pink eye are a result of the this gym not cleaning their equipment properly. there are a lot of kids there with student physical therapist and I don't see them separating out toys that need to be washed after having sessions. After Wednesday's session, I realize that I have complained about this location more than I have had anything positive to say, so I think its time to just move on to another agency and location. The PT has provided her notice, she told me yesterday that she might want to leave earlier than July to take care of family issues. While means, the search for a new Physical therapist has to start right now.
To do: sadly still on my list: SSI application. I just need a block of time to devote to it without Felipe trying to fill out the paperwork with me!
Felipe is now at the phase where he likes to push the limit of when he will fall asleep. He usually naps around 3-4pm but yesterday he refused to go to sleep. A friend was over and he couldn't pass up the opportunity to play with someone else aside from mami. So instead, he played till he passed out, against his will. Unfortunately, he was awoken a few minutes into his nap by the sound of the door bell. The physical therapist had arrived and it was time for therapy.
Felipe was not having it. He cried and cried and cried. Unfortunately, it was the most unproductive session we have ever had. The theratogs had arrived and they first need to be measured to fit him perfectly. The vest portion seems to be about 5 inches too big while the leg portions seem to fit well. I hesitate from cutting anything especially since its so costly. I'll leave it to the physical therapist to decide that. Nothing was properly measured bc Felipe was refusing to stand or situp. He was demonstrating his great imitation of a worm, full body weight to the floor and squirmed away from mami and she tried to redirect him.
Theratogs have to be worn for 30-45 minutes at a time for 2-3 times a week. The PT said that was the minimal amount but at optimum useage, they can be worn for 30 minutes every day. The time spent in them can't exceed 30 minutes. Feeling the material, I'm not sure that Felipe during the summer month can really tolerate it for 30 minutes. The theratog material is sort of like a wetsuit material or similar to those "loose weight quick" blue sweat producing bands that they sell for the tummy area. The idea behind it is that one side of the theratog has a material that pulls the skin or sends a sensory response to the skin. Because there is friction in putting on the material, when Felipe walks or crawls, the material will pull his skin in the direction it should be. It start to feel uncomfortable to be in the incorrect sitting or crawling position. Theratogs are similar to the idea of the kinetic tape that was tired with Felipe is HSS. Although no tape to painfully remove--that stuff had some crazy adhesive material.
Today we have the PT at the gym. I have the suspicion that all of Felipe's recent colds and pink eye are a result of the this gym not cleaning their equipment properly. there are a lot of kids there with student physical therapist and I don't see them separating out toys that need to be washed after having sessions. After Wednesday's session, I realize that I have complained about this location more than I have had anything positive to say, so I think its time to just move on to another agency and location. The PT has provided her notice, she told me yesterday that she might want to leave earlier than July to take care of family issues. While means, the search for a new Physical therapist has to start right now.
To do: sadly still on my list: SSI application. I just need a block of time to devote to it without Felipe trying to fill out the paperwork with me!
Thursday 29 May 2014
Times Flies when baby is sick
Some updates, in list format bc baby might wake up at anytime
1. Felipe had pink eye last Tuesday. His eyes were so gooey! ew. He has drops and the issues has resolved BUT...
2. Felipe now has an ear infection. We were back in the doc office this tuesday, after just visiting last week. felipe had a consistent fever of 102.5 and the motrin/tynenol combo wasn't slowing down the progression of the fever. He has a slight cough and runny nose. He was prescribed antibotics which he doesn't like but has to take. He doesn't want to eat much and generally doesn't want to do much but laydown on mami's chest and crawl up into a ball. Poor little guy is having a hard time.
3. Theratogs have arrived! yea! its a confusing package, so photos to come once I figure out and get certified on how to put these things on Felipe. One thought on it all, it seems awfully warm to put on during the summer, lets see how Felipe survives
4. PT that comes to the house has resigned and will be leaving in August. This makes me sad. She was very skilled, compassionate, and loving with Felipe. We are trying to make the best of the last weeks she is here, new replacement yet to be reassigned. Praying that God will provide us with an equal or better therapist for Felipe to continue to progress
5. Botox went well on 5/19. Seems to be taking a way to take into effect, but its really only been one week. I'm just to anxious to see progress and sometimes I don't notice i too much.
6. Gym PT reports significant difference in strength in Felipe's legs. She feels that he can adjust himself when standing (and leaning on a bench). This is great to hear, its often hard to notice the progression when I'm with him and working with him everyday. Glory to God, as there are some significant changes that are solely attributed to divine intervention.
7. I'm still not loving the GYM or the EI agency, I'm considering a move with agencies. but a new factor just came to mind. I've wanted to put Felipe into a Montesorri school. I just happen to call one and they said they take kids as early as 2 years old. So if I put him in a school, then I could a) change agencies to service him at the school at least part of the time b) get a part time job so I can help contribute financially to the family expenses and c) give felipe more kid time, he usually just has me to play with. A hurdle might be this issue of potty training.
8. Potty training....
oops he woke up! bye
1. Felipe had pink eye last Tuesday. His eyes were so gooey! ew. He has drops and the issues has resolved BUT...
2. Felipe now has an ear infection. We were back in the doc office this tuesday, after just visiting last week. felipe had a consistent fever of 102.5 and the motrin/tynenol combo wasn't slowing down the progression of the fever. He has a slight cough and runny nose. He was prescribed antibotics which he doesn't like but has to take. He doesn't want to eat much and generally doesn't want to do much but laydown on mami's chest and crawl up into a ball. Poor little guy is having a hard time.
3. Theratogs have arrived! yea! its a confusing package, so photos to come once I figure out and get certified on how to put these things on Felipe. One thought on it all, it seems awfully warm to put on during the summer, lets see how Felipe survives
4. PT that comes to the house has resigned and will be leaving in August. This makes me sad. She was very skilled, compassionate, and loving with Felipe. We are trying to make the best of the last weeks she is here, new replacement yet to be reassigned. Praying that God will provide us with an equal or better therapist for Felipe to continue to progress
5. Botox went well on 5/19. Seems to be taking a way to take into effect, but its really only been one week. I'm just to anxious to see progress and sometimes I don't notice i too much.
6. Gym PT reports significant difference in strength in Felipe's legs. She feels that he can adjust himself when standing (and leaning on a bench). This is great to hear, its often hard to notice the progression when I'm with him and working with him everyday. Glory to God, as there are some significant changes that are solely attributed to divine intervention.
7. I'm still not loving the GYM or the EI agency, I'm considering a move with agencies. but a new factor just came to mind. I've wanted to put Felipe into a Montesorri school. I just happen to call one and they said they take kids as early as 2 years old. So if I put him in a school, then I could a) change agencies to service him at the school at least part of the time b) get a part time job so I can help contribute financially to the family expenses and c) give felipe more kid time, he usually just has me to play with. A hurdle might be this issue of potty training.
8. Potty training....
oops he woke up! bye
Monday 12 May 2014
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.
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.
Tuesday 6 May 2014
Evaluation by EI: Progress!
Felipe was evaluated yesterday by the physical therapist from early intervention. He is very strong in his upper body and strong in his abs. He tried to pull himself a flight of steps, using all his upper body strength. While this shows progression, the true progress that his legs and his hips are involved in the movements. there is a little hip movement and he is trying to stand. He pulls him his legs towards the step but can't plant his feet firmly on the ground. however, the new braces are slightly lighter and more flexible than the last pair. They stay on longer while he crawls. Which is great bc then he can crawl and try to stand up on his own.
The evaluation prompted some inner conflict. Some progression is good but also can be taken out of context. For instance, he earns points for crawling up the stairs. However, he achieved it by only using his upper body. So does that really earn him the points demonstrating progression?! I don't think so. Its doesn't show the progression in his legs and hips which are really at issue.
The therapist have ordered the Theratogs, which are like a little girdle that will put him in better posture and keep him in better aligned. We'll see when it will arrive.
Things still to do: SSI application, reaching out to the office of disabilities, and speaking to a contact regarding transportation for children in specialized strollers. Need to update resume and start looking for part time jobs that I can do while caring for Felipe.
The evaluation prompted some inner conflict. Some progression is good but also can be taken out of context. For instance, he earns points for crawling up the stairs. However, he achieved it by only using his upper body. So does that really earn him the points demonstrating progression?! I don't think so. Its doesn't show the progression in his legs and hips which are really at issue.
The therapist have ordered the Theratogs, which are like a little girdle that will put him in better posture and keep him in better aligned. We'll see when it will arrive.
Things still to do: SSI application, reaching out to the office of disabilities, and speaking to a contact regarding transportation for children in specialized strollers. Need to update resume and start looking for part time jobs that I can do while caring for Felipe.
Wednesday 30 April 2014
Felipe's mom has a cold
...And everything gets done slower. Its miserable to have a cold, to have a runny nose, feeling yucky and still have to run errands and follow a routine. Today we went to the gym, the physical therapist could barely hear me with my scratchy voice. I am still trying to identify how to make things better. I think its large part of my personality to try to "fix it" before calling it quits but really, I can't stand this PT or this gym. My list of dislikes is getting longer every time I go.
I don't like:
1) the unprofessional: its a kids place, I get it, but you can have your receptionist say "good morning, how can I help you" instead of glancing over her desk and saying "who are you?".
2) The workers are in the same space with each other all day long and yet they pick my son's 30 minutes of a session to have conversation about other students and other things while the son is being stretched and prepped for exercises. again, unprofessional
3) the lack of attempt to being kind to my child. For instance his name is Felipe. I can't imagine that any one working with a child will not call them by their first name through out 30 minutes. You need to catch his attention, call his name. "you" "Hey" "hey now" doesn't cut it. It shows you can't even bother to learn his name and it shows that you aren't interested efficiently and effectively capturing his attention.
4) what up with all the mats being so close together, I can hear all of the activity of the next child. There is no boundaries as evident by the fact Felipe almost got pushed over by another therapist who was speaking to a child and didn't see my son on the floor.
5) why does this therapist sit there is silence for 30 minutes and then say, you need to work on this some more? Work on what? I am not a mind reader, you clearly thought you communicated something that you did not.
6) I gave them at least 30 page copy of his medical record and not one question as when it comes to his recovery or progress. it shows me that 1) again you don't care and 2) you don't know anything. its important to know if the fatty tumor was resting on L2 or L3 bc then you can gauge the progress. how is she marking his progression otherwise?! a guestimation?
7) Why show felipe, lover of all things ball related, a huge pit of balls and then tell him not to go there. like why?! A huge pit of balls of various colors, he isn't going to easily forget and he will spend all of his 30 minutes aching to get into the balls. And then you have this impression that he is hard to work with when in reality, you have set him up to fail!!!
8) the entrance has a very small waiting room for parents. the seats are fold out chairs. there is no space to get a child ready to go in or to leave.
this list is getting to long which means I just need to change location.
Felipe gets his new braces tomorrow. So tomorrows to do list is short bc I'm sick.
10am Brace Shop, 11am swimming, afternoon (no time yet) physical therapy. and I have to go the bank, post office and staples.
good night!!
I don't like:
1) the unprofessional: its a kids place, I get it, but you can have your receptionist say "good morning, how can I help you" instead of glancing over her desk and saying "who are you?".
2) The workers are in the same space with each other all day long and yet they pick my son's 30 minutes of a session to have conversation about other students and other things while the son is being stretched and prepped for exercises. again, unprofessional
3) the lack of attempt to being kind to my child. For instance his name is Felipe. I can't imagine that any one working with a child will not call them by their first name through out 30 minutes. You need to catch his attention, call his name. "you" "Hey" "hey now" doesn't cut it. It shows you can't even bother to learn his name and it shows that you aren't interested efficiently and effectively capturing his attention.
4) what up with all the mats being so close together, I can hear all of the activity of the next child. There is no boundaries as evident by the fact Felipe almost got pushed over by another therapist who was speaking to a child and didn't see my son on the floor.
5) why does this therapist sit there is silence for 30 minutes and then say, you need to work on this some more? Work on what? I am not a mind reader, you clearly thought you communicated something that you did not.
6) I gave them at least 30 page copy of his medical record and not one question as when it comes to his recovery or progress. it shows me that 1) again you don't care and 2) you don't know anything. its important to know if the fatty tumor was resting on L2 or L3 bc then you can gauge the progress. how is she marking his progression otherwise?! a guestimation?
7) Why show felipe, lover of all things ball related, a huge pit of balls and then tell him not to go there. like why?! A huge pit of balls of various colors, he isn't going to easily forget and he will spend all of his 30 minutes aching to get into the balls. And then you have this impression that he is hard to work with when in reality, you have set him up to fail!!!
8) the entrance has a very small waiting room for parents. the seats are fold out chairs. there is no space to get a child ready to go in or to leave.
this list is getting to long which means I just need to change location.
Felipe gets his new braces tomorrow. So tomorrows to do list is short bc I'm sick.
10am Brace Shop, 11am swimming, afternoon (no time yet) physical therapy. and I have to go the bank, post office and staples.
good night!!
Monday 28 April 2014
Monday Monday Monday....
Felipe has completed one time in the stander and when I took him out, I tried to see if he would walk a little. He took 5 steps!!! I was so excited to see his progress. After about 3 to 4 times in the pool I do notice a little more strength (and increased appetite).
PT had to cancel today bc of of a family emergency, I will have to remind her to schedule a make up session. Since most of the days he already has physical therapy, the session might end up being on a Sunday.
The To DO List grows and I'm not feeling great and I just had 2 root canals done. But here it is:
1) SSI Packet
2) call neurologist re: EMG testing
3) call insurance company re: brace payments
4) call around re: transportation options with wheelchair
5) call to get new swimming schedule for this week
6) call around catchment area EI service providers to see if I can change the agency
soo sleepy
soo sleepy
Friday 25 April 2014
Stay At Home Mom, Esq.
After much debating, praying and seeking counsel from close friends and family, I have decided to NOT return to work in May. While I can live with the regret of leaving my dream job without guarantees of being able to return with things have settled with Felipe. I would not be able to live regretting that I didn't do everything possible for Felipe. I will miss the practice of law, my clients, my coworkers, and the crazy smells of the courtroom. But on to tackle physical therapy, advocating w insurance company approving medical procedures, and daily house hold chores and Felipe treatment schedule. So far, after 5 months, I'm slowly in a routine of:
Wake up and clean before Felipe awakes
wake up Felipe
feed Felipe
put Felipe in stander for 30 minutes
take Felipe out, massage
Change Felipe into street clothing
Let Felipe crawl 30 minutes
take felipe to swim
lunch in stander
nap
physical therapy
make phone calls to medical providers for follow up
make phone calls regarding house hold issues
(let Felipe crawl during phone calls)
Put Felipe in stander as I cook dinner
Dinner
Bath
Sleep for Felipe
Check emails for follow up with early intervention/medical providers
Clean up after Felipe
Go to sleep (11pm)
I might consider picking up the habit of drinking coffee, I need all the energy I can muster up!!!
Wake up and clean before Felipe awakes
wake up Felipe
feed Felipe
put Felipe in stander for 30 minutes
take Felipe out, massage
Change Felipe into street clothing
Let Felipe crawl 30 minutes
take felipe to swim
lunch in stander
nap
physical therapy
make phone calls to medical providers for follow up
make phone calls regarding house hold issues
(let Felipe crawl during phone calls)
Put Felipe in stander as I cook dinner
Dinner
Bath
Sleep for Felipe
Check emails for follow up with early intervention/medical providers
Clean up after Felipe
Go to sleep (11pm)
I might consider picking up the habit of drinking coffee, I need all the energy I can muster up!!!
Swimming Felipe!
Today was Felipe's second time in the pool at the local YMCA. I've also signed him up to swim classes. The hope is that these outing will help Felipe improve his muscle tone and help increase sensation in his legs. So far he has loved it! Once I told the physical therapist that he was enrolled in a YMCA with a pool she gave me a list of exercises to do in the water:
1) Side to Side: Alternating on his back or on this stomach sway him left and right, try to get his hips to react by grabbing him under his arms by his rib cage. Do not let his head go underwater. Observe to see what his hips do, do they adjust to the opposite side?
2) Splashing with legs: hold him from the hips, guide his legs to the surface and encourage him to splash with his legs, moving his legs from his knees (in and out of the water surface)
3) After leaving pool Felipe's legs should be more relaxed, massage muscle area and stretch 10 times before leaving changing room.
Today he had fun splashing with his hands and did have significant movement on his hips/ab area. When I would drag his his torso to his left, he would compensate and turn with his hips to the right. This is all good!
The not so great news is the gym. I don't like the therapist, I don't like the location and right now I'm not seeing the point of the 20 minute drive to get somewhere where the therapist is pretty clueless. I'm going to follow the advice of the PT from HSS, I'm going to start looking for a new service provider and try to find a new therapist and center/gym. I am already displeased with having to accept an orthodox jewish calender which would mean Felipe will not have therapy for 6 days in September bc of all the holydays. I rather they follow the usual school calender and provide a better gym.
So starting monday, call up and figuring out where I can transfer Felipe's case. I don't want to loose an awesome physical therapist but the gym is terrible.
Hopefully I can take a photo soon of Felipe in the pool!
Thursday 24 April 2014
So much things to do, do little time!
Felipe has started at the gym-center based services this Wednesday 4/23. The location is fairly close by mass transit and/or by car. I was kind of tempted to walk over, might be good exercise for mom but baby would fall asleep and the last thing I needed was a sleepy baby before physical therapy. As usual he get there, smiled and waved and screamed. Its weird to be in a smaller setting, I feel like I wish I could continue at Hospital for Special Surgery where they have more equipment and things seem brighter, more child friendly and more empowering of parents. My first impression of this place was that they just took the kid and left. I was not having that, I want to see the exercises, stretches and what he is doing so i can replicate at home or at the very least, if I'm asked about it I know what is going on. I hope that things work out, I am not going to let me nervousness about if I made the right decision to cloud or merk the sessions, I'm going to remain neutral and just observe if this place is best for Felipe.
I FINALLY signed up Felipe to the YMCA. We took him for his first swim on Tuesday. I'm trying to enroll him in swimming classes that begin next week. The only thing I find near to impossible is changing him in and out of the swimming stuff. He gets showered, remove the chlorine, I remove the swimming diaper, put on fresh clothing. And then what about MAMI?! How do I change with Felipe in the changing room. Its not an issue of modesty, there is no space to put the baby down for a minute while I shower. I am doing to have to do some figuring out, maybe bring the stroller into the shower area so I can rinse off the chlorine and not have itchy skin. At the very least, I can dry off and change without fear he will crawl away. The ideal is to go with someone.
Felipe's braces are in! yea, we are going tomorrow to pick them up and make any last modifications. Also going to HSS for last therapy session that is covered by the insurance. From here on in, it will just be Early intervention at home and in the gym.
I've called the neurologist several times with no results, I'm going to step up my level of harassment/stalking. The PT wanted me to see if EMG would be a good test to do for Felipe. I don't really know what EMG is, except that it measures nerve damage and response times. PT seems to notice that one leg isn't as response as the other. Its been continuous and she wants to determine if there is nerve damage how to better address the issue. PT said she might leave in September which I'm sad about, she is great. What ever she doesn't know she researches articles. Whatever questions I have she is really insightful and full of encouragement. I hope we can continue to use her for as long as it takes!!!
Today was Access A Ride assessment interview. AAR would make traveling to doctor appointments much easier. I can get to Manhattan without having to walk 1.2 miles to coney island station or fighting w the bus driver to let me on. Felipe wasn't very happy with the interview. The rooms were as small as a bathroom stall.
Now that I've tackled the small thing like AAR, next thing, the SSI application. And also speaking with the Spinal Bifia organization about resources and other locations for additional help for Felipe. YMCA is costly but really hopeful that swimming with help with Tone. Hopefully with SSI approval or with SBA, I can get a discount and the swimming classes wouldn't be a financial hardship.
On that note, I have decided to leave my position at work and stay at home full time. The babysitter candidates were getting more and more expensive. The money I make would go directly to them and then I would be in debt with student loans. It was a very difficult decision but ultimately, I do not want to have any regrets about if I did everything possible to ensure that Felipe walks and thrives. I rather regret leaving the job of my dream. And in the end God has a plan for me and I have to trust that he will find a way to get me back to my job or find me another better position for me once Felipe has fully recovered.
Hugs from this official, stay at home mom. I'm not sure how I feel about the title "Stay at home mom" for one, I am never home. I'm either running errands, taking Felipe to appointments, on phone scheduling appointments,etc. smh.
I FINALLY signed up Felipe to the YMCA. We took him for his first swim on Tuesday. I'm trying to enroll him in swimming classes that begin next week. The only thing I find near to impossible is changing him in and out of the swimming stuff. He gets showered, remove the chlorine, I remove the swimming diaper, put on fresh clothing. And then what about MAMI?! How do I change with Felipe in the changing room. Its not an issue of modesty, there is no space to put the baby down for a minute while I shower. I am doing to have to do some figuring out, maybe bring the stroller into the shower area so I can rinse off the chlorine and not have itchy skin. At the very least, I can dry off and change without fear he will crawl away. The ideal is to go with someone.
Felipe's braces are in! yea, we are going tomorrow to pick them up and make any last modifications. Also going to HSS for last therapy session that is covered by the insurance. From here on in, it will just be Early intervention at home and in the gym.
I've called the neurologist several times with no results, I'm going to step up my level of harassment/stalking. The PT wanted me to see if EMG would be a good test to do for Felipe. I don't really know what EMG is, except that it measures nerve damage and response times. PT seems to notice that one leg isn't as response as the other. Its been continuous and she wants to determine if there is nerve damage how to better address the issue. PT said she might leave in September which I'm sad about, she is great. What ever she doesn't know she researches articles. Whatever questions I have she is really insightful and full of encouragement. I hope we can continue to use her for as long as it takes!!!
Today was Access A Ride assessment interview. AAR would make traveling to doctor appointments much easier. I can get to Manhattan without having to walk 1.2 miles to coney island station or fighting w the bus driver to let me on. Felipe wasn't very happy with the interview. The rooms were as small as a bathroom stall.
Now that I've tackled the small thing like AAR, next thing, the SSI application. And also speaking with the Spinal Bifia organization about resources and other locations for additional help for Felipe. YMCA is costly but really hopeful that swimming with help with Tone. Hopefully with SSI approval or with SBA, I can get a discount and the swimming classes wouldn't be a financial hardship.
On that note, I have decided to leave my position at work and stay at home full time. The babysitter candidates were getting more and more expensive. The money I make would go directly to them and then I would be in debt with student loans. It was a very difficult decision but ultimately, I do not want to have any regrets about if I did everything possible to ensure that Felipe walks and thrives. I rather regret leaving the job of my dream. And in the end God has a plan for me and I have to trust that he will find a way to get me back to my job or find me another better position for me once Felipe has fully recovered.
Hugs from this official, stay at home mom. I'm not sure how I feel about the title "Stay at home mom" for one, I am never home. I'm either running errands, taking Felipe to appointments, on phone scheduling appointments,etc. smh.
Thursday 10 April 2014
A race against time....
...Felipe is doing well. However the botox is clearly a race against time. We have to work those muscles as much as we can before they get back to where they used to be, very tight and inflexible. Every morning, I stretch felipe's legs and hips and I feel the tightness trying to creep back into his muscles. All this week I've placed felipe in the stander for 30 minutes for 3 times a day, every day. He is tolerating being in his braces for longer periods of time. This is all due to the botox, thank God for that, however, there are little signs that the botox is wearing off. His right brace, the tighter muscles, have slipped off several times while doing some exercises. It only serves as a reminder that we gotta do as much as we can, as much as felipe can tolerate in the time we have the botox relaxing the muscles.
Felipe is getting chatter and chatter. So far he has begun to mimic more of the adult conversation. I swear he said "mine!" the other day in regards to the swiffer. He loves that thing, fortunately, he can clean up after the messes he makes :)
we were approved for the 5 times physical therapy but we haven't had a session as of yet. still waiting and getting annoyed and impatient. my current service provider follows a Jewish holiday schedule. I have had some days off when I was in college, but it was not nearly as disruptive as this very orthodox schedule. Next week, Felipe will only get one day of physical therapy for the week! And apparently in September it gets even worse with the holy days then. I'm not sure what to do. A friend of mine, with knowledge in the field, suggested switching agencies. I like the physical therapist so I would want to keep her as long as I could. I am praying on guidance on this topic, I just don't know what to do. or what might be the best strategy. Sounds like the physical therapist might relocate and might end up leaving the agency anyway, so perhaps I should put in a request to switch agencies. First thought, I need to pray on it more.
Tomorrow we have physical therapy at HSS, for one of the last sessions of the year. We have the ability to try out theratogs, which are being recommended by the EI PT. Theratogs are basically gurdles, or tight fitting cloth that helps with positioning, posture and muscle flow. Usually discouraged with kids with sensory issues, figured we tried it out before spending the EI money on the item. Some kids find it very restrictive. And others don't mind it at all. Personally, I dislike anything that makes me feel like a stuffed sausage. I'm hoping that Felipe isn't as picky as his mami.
Today during physical therapy Felipe's older brothers walked in during the session. Felipe was so happy to see them, he was to distracted to continue working. we had propped up some pillows to get him to lift his legs and work out some hip flexor muscles. His brothers stood behind the pillows and refocused Felipe to climb up the sofa, and take some steps in the walker. Felipe was very excited to see them and was eager to please them by completing the tasks. It was great to have them around and hope in other days, we have have surprise cameo appearances by his bro's to help with physical therapy. My biggest regret, not being quick with the camera to capture the great brother love moment.
Ok Felipe's mom is super tired. Felipe has a cold. :( Daddy has a cold. Mami gotta take care of two babies, lol.
Felipe is getting chatter and chatter. So far he has begun to mimic more of the adult conversation. I swear he said "mine!" the other day in regards to the swiffer. He loves that thing, fortunately, he can clean up after the messes he makes :)
we were approved for the 5 times physical therapy but we haven't had a session as of yet. still waiting and getting annoyed and impatient. my current service provider follows a Jewish holiday schedule. I have had some days off when I was in college, but it was not nearly as disruptive as this very orthodox schedule. Next week, Felipe will only get one day of physical therapy for the week! And apparently in September it gets even worse with the holy days then. I'm not sure what to do. A friend of mine, with knowledge in the field, suggested switching agencies. I like the physical therapist so I would want to keep her as long as I could. I am praying on guidance on this topic, I just don't know what to do. or what might be the best strategy. Sounds like the physical therapist might relocate and might end up leaving the agency anyway, so perhaps I should put in a request to switch agencies. First thought, I need to pray on it more.
Tomorrow we have physical therapy at HSS, for one of the last sessions of the year. We have the ability to try out theratogs, which are being recommended by the EI PT. Theratogs are basically gurdles, or tight fitting cloth that helps with positioning, posture and muscle flow. Usually discouraged with kids with sensory issues, figured we tried it out before spending the EI money on the item. Some kids find it very restrictive. And others don't mind it at all. Personally, I dislike anything that makes me feel like a stuffed sausage. I'm hoping that Felipe isn't as picky as his mami.
Today during physical therapy Felipe's older brothers walked in during the session. Felipe was so happy to see them, he was to distracted to continue working. we had propped up some pillows to get him to lift his legs and work out some hip flexor muscles. His brothers stood behind the pillows and refocused Felipe to climb up the sofa, and take some steps in the walker. Felipe was very excited to see them and was eager to please them by completing the tasks. It was great to have them around and hope in other days, we have have surprise cameo appearances by his bro's to help with physical therapy. My biggest regret, not being quick with the camera to capture the great brother love moment.
Ok Felipe's mom is super tired. Felipe has a cold. :( Daddy has a cold. Mami gotta take care of two babies, lol.
Thursday 3 April 2014
Progress is hard to keep in perspective...
As his mom I see him everyday and its hard to keep in perspective his progress so far. We went to Blyethedale to hand in the stroller that the hospital lent us. When we arrived his teacher from "infant school" said he looked stronger and leaner but more confident in his crawling. That he definitely is; so much so that its getting hard to entice him to start walking. The latest advice I got was to put him in the walker and have him walk towards his food at meal times. Hmm, tried to do that this morning and well, it didn't go as expected. I shall try again at dinner, in the hopes that by seeing Daddy at the table he will have two incentives to walk over.
Yesterday, we also had our first session of physical therapy in HSS after missing for a month. we missed a month bc Felipe was sick, or having the botox, or we were moving. All of which gave us a new perspective on how things are going. The therapist we usually saw gave us an overview of where he was at about a month ago and where he is now, and also, the stuff he needs to master for the future. we only have a limited number of time we can continue at HSS since we now have been approved for therapy 5 times a week with early intervention. I was using HSS as a one time a week, additional therapy that the insurance would cover. I think it was great to have two different perspectives and approaches (and personalities) work with Felipe. I am grateful that they are so knowledgeable and helpful in trying to help Felipe recover.
as for the aforementioned perspective, the therapist at HSS said that last month, felipe wasn't very strong when he would stand up and learn with two arms. He would buckle occasionally at the knees after a few seconds of standing. Now his knees are stronger and he is standing and leaning but only supporting himself with one arm so that he can explore with the other arm. His hips are stronger, but that could also be the botox. He is able to lift up his knees/hips to pass obstacles. So there is progress!
The things he needs to continue to do and improve on, continue to bear weight (on his own and using the stander)and trying to take strides on his own. The bearing weight is important to getting his hips formed in away that will prevent him from getting hip surgery. And also is the best and only way to keep his calf muscles from wasting away, or atrophying. That is something I have noticed, his legs are getting so thin, especially after he used to be a chunky little one.
Praying for continued perspective, patience and God willing, progress. And praying for all the kind medical providers that have helped us along the way.
Yesterday, we also had our first session of physical therapy in HSS after missing for a month. we missed a month bc Felipe was sick, or having the botox, or we were moving. All of which gave us a new perspective on how things are going. The therapist we usually saw gave us an overview of where he was at about a month ago and where he is now, and also, the stuff he needs to master for the future. we only have a limited number of time we can continue at HSS since we now have been approved for therapy 5 times a week with early intervention. I was using HSS as a one time a week, additional therapy that the insurance would cover. I think it was great to have two different perspectives and approaches (and personalities) work with Felipe. I am grateful that they are so knowledgeable and helpful in trying to help Felipe recover.
as for the aforementioned perspective, the therapist at HSS said that last month, felipe wasn't very strong when he would stand up and learn with two arms. He would buckle occasionally at the knees after a few seconds of standing. Now his knees are stronger and he is standing and leaning but only supporting himself with one arm so that he can explore with the other arm. His hips are stronger, but that could also be the botox. He is able to lift up his knees/hips to pass obstacles. So there is progress!
The things he needs to continue to do and improve on, continue to bear weight (on his own and using the stander)and trying to take strides on his own. The bearing weight is important to getting his hips formed in away that will prevent him from getting hip surgery. And also is the best and only way to keep his calf muscles from wasting away, or atrophying. That is something I have noticed, his legs are getting so thin, especially after he used to be a chunky little one.
Praying for continued perspective, patience and God willing, progress. And praying for all the kind medical providers that have helped us along the way.
Tuesday 1 April 2014
Monday 31 March 2014
Mourning for a friend....
Normally this blog is about Felipe and his recovery but over the last year a former coworker of mine has been going through a major challenge with her own son. She has twin boys but at 16 months one of her son's was diagnosed with Nueroblastoma, an aggressive type of cancer. About two weeks ago, she posted that the doctors noted the disease spread and he only had a week or two. Today, she announced his death passing away at 26 months, 2 years old.
I am heartbroken.
Her son is one of the main reasons why I cut 15 inches of my hair to donate to kids with cancer. Seeing updates on her son, the chemo, the reaction to experimental drugs, all trying to get him healthier and out of pain (And photos of a family trying to create a normalcy to a situation that is beyond ordinary) made me feel helpless, watching things deteriorate and not being able to do anything. Cutting my hair was my attempt to do something aside from sitting and observing.
Pls pray for his surviving family and twin brother to find peace in this difficult time.
I am heartbroken.
Her son is one of the main reasons why I cut 15 inches of my hair to donate to kids with cancer. Seeing updates on her son, the chemo, the reaction to experimental drugs, all trying to get him healthier and out of pain (And photos of a family trying to create a normalcy to a situation that is beyond ordinary) made me feel helpless, watching things deteriorate and not being able to do anything. Cutting my hair was my attempt to do something aside from sitting and observing.
Pls pray for his surviving family and twin brother to find peace in this difficult time.
Friday 28 March 2014
Foto Friday
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| Not quiet understanding that he has a shoe on already and that his shoe doesn't need another shoe...cutie |
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| From the post-lunch bath, straight to the stander, this baby gets no breaks! |
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| rash he had for 2 days, its started to go away, seems like he is ok, might have been a heat rash since apartment is SO warm |
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| Felipe's Selfie: amazing that at 14 months he can turn on my phone, select camera and take photos. SMH |
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| Mami has to multitask, took laundry and then taking Felipe to the bank. |
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| Mami is crazy, no?! |
Thursday 27 March 2014
Things to do....things accomplished
- Will go to the brace shop on Friday to get new braces. his old ones are too small and his little toes are peeking over the edge. lets hope the new ones are easier to put on and off.
- Dr. Root's secretary called, the botox was approved by the insurance. We are just waiting on the pharmacy to approve a delivery date and then we can schedule an appointment for botox injects again in June. follow up with secretary by next Tuesday no pharmacy calls us. She will write script for theratogs, a device used for rehab for kids with sensory issues.
- Called and left a message with the physical therapist at HSS for additional session and for a letter for Early intervention. Perhaps she can advocate for us too.
- left a message with the Nuerosurgeon's nurse practitioner, awaiting a response re: letter for EI mediation
- 6pm today, we get the new stroller :)
- Dr. Root's secretary called, the botox was approved by the insurance. We are just waiting on the pharmacy to approve a delivery date and then we can schedule an appointment for botox injects again in June. follow up with secretary by next Tuesday no pharmacy calls us. She will write script for theratogs, a device used for rehab for kids with sensory issues.
- Called and left a message with the physical therapist at HSS for additional session and for a letter for Early intervention. Perhaps she can advocate for us too.
- left a message with the Nuerosurgeon's nurse practitioner, awaiting a response re: letter for EI mediation
- 6pm today, we get the new stroller :)
Wednesday 26 March 2014
Ortho and EI Mediation update.
Ortho said Felipe is still very tight and might need another botox injection. This will most likely happen in June. The next botox injection will be solely focused on his hamstrings. The last dosage was spread over 9 shots so maybe a more concentrated dosage will keep him very flexible. Despite what the doctor says, he is so much more flexible than before. He has outgrown his braces and he needs new ones. Hopefully the new ones will be easier to put on and off. He also provided me with a very short letter saying that he should have therapy 5 times a week. Lets hope that helps with the mediation. In regards to the Hips, he wants to keep on monitoring the hip displacement. His first impression is that its somewhat normal for his age and tightness within his muscles and it should resolve itself with a lot of weight bearing exercises.
I received a call from the director of medicine within the Early Intervention program. He says he wanted to know more information about Felipe and why I was thinking that he should have therapy five times a week. I was hoping that he would have an answer during the phone call but instead said he "will think about it and call right back" No phone call yet. I have a feeling that they want to extend the time for 60 minutes but that will not be helpful for Felipe who can't stay focused for that long. Praying that things work out for the best. It seems weird that "opposing" side would contact me over the phone before the mediation date. IDK, I don't have that much experience in this area but seems like the majority of parents just give up and don't request mediation. This whole process enrages me for the parents who don't fight back bc these officials use their authority or title to intimate. Its definitely not about the welfare of the child but how to save money and do the least amount possible. :(
To Do: 1) follow up with Ortho. Wait about a week to schedule an appointment with Ortho once insurance approves Botox injection from their specialty pharmacy. Assistant said she will call me but to check in within the week in case. 2) organize the papers and letters in support for Felipe's increase and make multiple copies to distribute at Mediation Session.
Therapist told us to only put Felipe in high chair if he has his braces on. He can not have his feet dangling. So now, at any point, he can have his braces on. Just not for crawling. Its actually made the transition from eating to doing time in the stander much easier. He finishes eating and then I pick him up and put him in the stander. He is pooped from all the exercises. He is napping longer.
He also has a rash on his face. Apparently it might be a reaction to the MMR vaccine or something he ate. Its just on his face and it isn't itchy. But he seems tired and hasn't wanted to eat as much as he usually does. He is drinking A LOT. No fever as of yet, I'm monitoring him and if the rash doesn't get better by tomorrow I will call the pediatrician. Apparently the MMR vaccine is very common. :(.
I received a call from the director of medicine within the Early Intervention program. He says he wanted to know more information about Felipe and why I was thinking that he should have therapy five times a week. I was hoping that he would have an answer during the phone call but instead said he "will think about it and call right back" No phone call yet. I have a feeling that they want to extend the time for 60 minutes but that will not be helpful for Felipe who can't stay focused for that long. Praying that things work out for the best. It seems weird that "opposing" side would contact me over the phone before the mediation date. IDK, I don't have that much experience in this area but seems like the majority of parents just give up and don't request mediation. This whole process enrages me for the parents who don't fight back bc these officials use their authority or title to intimate. Its definitely not about the welfare of the child but how to save money and do the least amount possible. :(
To Do: 1) follow up with Ortho. Wait about a week to schedule an appointment with Ortho once insurance approves Botox injection from their specialty pharmacy. Assistant said she will call me but to check in within the week in case. 2) organize the papers and letters in support for Felipe's increase and make multiple copies to distribute at Mediation Session.
Therapist told us to only put Felipe in high chair if he has his braces on. He can not have his feet dangling. So now, at any point, he can have his braces on. Just not for crawling. Its actually made the transition from eating to doing time in the stander much easier. He finishes eating and then I pick him up and put him in the stander. He is pooped from all the exercises. He is napping longer.
He also has a rash on his face. Apparently it might be a reaction to the MMR vaccine or something he ate. Its just on his face and it isn't itchy. But he seems tired and hasn't wanted to eat as much as he usually does. He is drinking A LOT. No fever as of yet, I'm monitoring him and if the rash doesn't get better by tomorrow I will call the pediatrician. Apparently the MMR vaccine is very common. :(.
Monday 24 March 2014
Mediation update...
EI medical director, the person behind the scenes who approves or denies the request for increase in services has contacted the physical therapist and asked her opinion in Felipe's case. I am thankful that the physical therapist is a great advocate for Felipe's needs and I'm also thankful that my friend in educational litigation had prepared me to hear the various usual responses by the officials. As expected they would like to increase each session to a full hour, but limiting the sessions to 3 times a week. So on its face, appearing to have more time but in reality just stretching out the time that the therapist has with him. This would be a great solution if Felipe wasn't 13 months old. Even though he is pretty attentive and cooperates with the therapist, asking him to work for an hour is an unrealistic expectation of ANY 13 month old. They generally have meltdowns after being pushed and is counter productive to an increase in services if he no longer wishes to be pushed for so long. The therapist voiced this concern as well. Secondly, he suggested that I should be doing these exercises at home anyway and no need for a physical therapist to do more work. An insult to the therapist who only spent 12 years of her lift getting a PhD in the treatment of children with neurological disorders to think I as a concerned parent would know the intricate knowledge that goes behind rehabilitating a child. It constantly amazes me the level of knowledge you really need to have. I know the thigh muscle is the quad, but I don't know all the ligaments and connectors and how it relates to the level of the spine. I didn't go to school for that. There has been days in which I can tell Felipe is in pain or uncomfortable but I don't know why, and I stop. crying isn't good and I stop, very basic and doesn't yield high results or better results if someone who knows what they are doing, is there feeling how his muscles are moving and how they are reacting to new positions. He told the physical therapist he will consider what other options are available, but didn't seem convinced as of yet to agree to the increase. Please continue to pray for wisdom and compassion for all involved, and God willing, we will have an increase of services on April 8th.
I also ask for continued prayers for finding a babysitter. Its such a hard choice to leave Felipe while he is still recovering (the doctors gave him till 2 years of age). And yet its hard to remain at home with all the responsibilities piling up. I've asked for guidance and wisdom and I hope to follow God's path. I have faith that things can resolve in ways that I have not considered. Thank you friends for your prayers we've been through a lot but have been able to stand up bc of friends, our faith and God's strength.
I also ask for continued prayers for finding a babysitter. Its such a hard choice to leave Felipe while he is still recovering (the doctors gave him till 2 years of age). And yet its hard to remain at home with all the responsibilities piling up. I've asked for guidance and wisdom and I hope to follow God's path. I have faith that things can resolve in ways that I have not considered. Thank you friends for your prayers we've been through a lot but have been able to stand up bc of friends, our faith and God's strength.
Sunday 23 March 2014
This weekend...
Friday's appointment w the urologist went well. The doctor discontinued the antibotics under the theory that all bacteria will eventually flush out of Felipe's system and over medicating doesn't really help the situation. Only until he develops a high fever should they start treating the UTI. He got on his soap box about how pediatricians should not catheterize but instead use a fine needle aspiration to pull out urine in order to provide the cleanest possible urine. I guess my facial expression didn't fool him, I was looking at him like "what?! really now you are saying its the pediatrician that took the urine out wrong with catheterizing" I don't know, sometimes the guy rubs me the wrong way. And I know I'm super defense of the pediatrician bc I feel she is super professional, caring and very responsible to her patients. Either way, even assuming that the last infection where he had a fever was a UTI, then getting antibiotics was appropriate. Getting antibiotics for a second time after testing his urine after the antibiotics, despite having no symptoms, was NOT proper procedure. (despite the urologist's nurse requesting a test after the antibiotics was done).
So difficult to manage multiple specialist. They all have their own personalities and all have their own theories of treatment ranging to being most conservative to more risk taking. The urologist is very risk adverse. And yet he is very "laid back" kinda person so to me most of his medical opinions are "lets wait and see". That the advise of "lets wait and see" kinda annoys the hell out of me especially since given the usual trajectory. Felipe suddenly spikes in fever and we end up the hospital with a kidney infection is not something I want to "wait and see". As in life, there are times medicine does not provide any comfort.
Update on the babysitter search, Candidate number #3, I met on Friday afternoon. I really liked her. She is a young nursing student, that is taking some online courses as she can afford them. She is originally from Maryland and has family in NJ and PA. She was sick when she was younger, in her teens. She had something similar to Felipe, involving her spinal cord and spine. Turns out she has the same neurosurgeon as Felipe and knows a lot of individuals, nurses and staff at the same hospital. I found her to be appropriate with Felipe: giving him some time to get used to her, letting him come to her and trying to interact with him w his toys. She also knows how physical therapy works as she had to undergo a lot of it when she was younger. She wants to go into pediatric nursing bc of all that she experienced and wants to be there for other kids. She had answered an ad that I placed in a christian newsletter so it was great to be able to have an open conversation about faith and prayer. I am calling her references this week. I have some reservations in that, I'm not sure if I should continue to look for other babysitters to interview or if I stop looking. I'm hoping to return to work after the mediation session for Early Intervention, after April 14th or so. I will like to have some overlapping time so that she can see the routine that Felipe has with his exercises. I think it would be great if she could document her progress as well through blog entries and other ways that technology can make it feel like I'm not gone from him for so long during the day.
This Saturday, I went to Rejuvenate ministry held at church for parents with kids with special needs. I dropped off Felipe with some sisters from Church and they looked after him while I had 2 hours to myself. It was great. I walked to a local salon, got my hair cut. I am donating about 15-16 inches of hair to locks of love. Its a bit of a shock to have short hair but I also feel at least 2 lb lighter! My hair is heavy. I then walked back to church and before picking up Felipe got an orange juice with a muffin. A muffin I didn't have to share and an orange juice I didn't have to quickly drink in order to prevent Felipe from spilling it. Its just the little things that do help to rejuvenate and help restore some energy for the upcoming week. I'm very grateful for those 2 hours and I hope to continue to build fellowship w the parents that have children with special needs but also the lovely caring women who offer their time to help Felipe and his mom.
Sunday, Herminio and I went to play tennis. Oy, I'm very very rusty. Herminio has the excuse that he is a beginner. I have no excuse, I used to be good at tennis. In fact when i was 7 months pregnant I played a little tennis and had a good volley with one of Herminio's co workers. Now, I'm worse than when I was pregnant! Oh well!
I was able to accomplish some of my to-do list since my mother and aunt came to help watch Felipe as I ran errands.
New added to do's: Call babysitter references; draw up tentative job description and expectation; print out necessary tax forms for babysitter to fill out; contact employer about start date; go to post office; drop off laundry and sign up to the YMCA!!!
So difficult to manage multiple specialist. They all have their own personalities and all have their own theories of treatment ranging to being most conservative to more risk taking. The urologist is very risk adverse. And yet he is very "laid back" kinda person so to me most of his medical opinions are "lets wait and see". That the advise of "lets wait and see" kinda annoys the hell out of me especially since given the usual trajectory. Felipe suddenly spikes in fever and we end up the hospital with a kidney infection is not something I want to "wait and see". As in life, there are times medicine does not provide any comfort.
Update on the babysitter search, Candidate number #3, I met on Friday afternoon. I really liked her. She is a young nursing student, that is taking some online courses as she can afford them. She is originally from Maryland and has family in NJ and PA. She was sick when she was younger, in her teens. She had something similar to Felipe, involving her spinal cord and spine. Turns out she has the same neurosurgeon as Felipe and knows a lot of individuals, nurses and staff at the same hospital. I found her to be appropriate with Felipe: giving him some time to get used to her, letting him come to her and trying to interact with him w his toys. She also knows how physical therapy works as she had to undergo a lot of it when she was younger. She wants to go into pediatric nursing bc of all that she experienced and wants to be there for other kids. She had answered an ad that I placed in a christian newsletter so it was great to be able to have an open conversation about faith and prayer. I am calling her references this week. I have some reservations in that, I'm not sure if I should continue to look for other babysitters to interview or if I stop looking. I'm hoping to return to work after the mediation session for Early Intervention, after April 14th or so. I will like to have some overlapping time so that she can see the routine that Felipe has with his exercises. I think it would be great if she could document her progress as well through blog entries and other ways that technology can make it feel like I'm not gone from him for so long during the day.
This Saturday, I went to Rejuvenate ministry held at church for parents with kids with special needs. I dropped off Felipe with some sisters from Church and they looked after him while I had 2 hours to myself. It was great. I walked to a local salon, got my hair cut. I am donating about 15-16 inches of hair to locks of love. Its a bit of a shock to have short hair but I also feel at least 2 lb lighter! My hair is heavy. I then walked back to church and before picking up Felipe got an orange juice with a muffin. A muffin I didn't have to share and an orange juice I didn't have to quickly drink in order to prevent Felipe from spilling it. Its just the little things that do help to rejuvenate and help restore some energy for the upcoming week. I'm very grateful for those 2 hours and I hope to continue to build fellowship w the parents that have children with special needs but also the lovely caring women who offer their time to help Felipe and his mom.
Sunday, Herminio and I went to play tennis. Oy, I'm very very rusty. Herminio has the excuse that he is a beginner. I have no excuse, I used to be good at tennis. In fact when i was 7 months pregnant I played a little tennis and had a good volley with one of Herminio's co workers. Now, I'm worse than when I was pregnant! Oh well!
I was able to accomplish some of my to-do list since my mother and aunt came to help watch Felipe as I ran errands.
New added to do's: Call babysitter references; draw up tentative job description and expectation; print out necessary tax forms for babysitter to fill out; contact employer about start date; go to post office; drop off laundry and sign up to the YMCA!!!
Thursday 20 March 2014
Mediation date scheduled
So Mediation has been set for April 8th. I have to get all the documentation from medical providers and I also need to create a strategy for this mediation session. Basically a neutral party will hear the early intervention's reasons for not granting the additional sessions. And then I get to say all the reasons that should be looked at as well for why the additional sessions should be granted. Then the neutral party tries to sum up what each party is saying and then encourages an agreement.
If the agreement is something we all agree to, then the ongoing service coordinator will have to add it into the service plan, which will make it a legally binding document. They would have to comply otherwise can be taken to court for failure to provide services.
So, to do list is getting very long and with short turn around time. 1) must call: Neurologist, Neurosurgeon, orthopedist, and pediatrician requesting a letter in support for increase. Invite them all to be available by phone April 8th to answer questions if necessary. 2) Speak with Advocate for Kids to find strategy for mediation session. 3) create copies of letters for mediator, DOE, Service provide, PT and for myself for day for mediation. 4) possibly ask HSS PT for letter to DOE as well.
On going list of things to do:
1) set up medical appointments for myself 2) change of address with all credit cards and bills 3) call access a ride 4) search for babysitter 5) call for SSI services 6) enroll in YMCA swimming classes 7) search for pediatric dentist and schedule first dental appointment 8) do taxes and set up payroll for babysitter 9) call HSS ask for additional physical therapy sessions 11) follow up with Urologist about medical records being sent to him before Friday's appointment re: UTI 12) go to pharmacy for ear infection medication, for myself...how does an adult get an ear infection?!?!?! :( 13) grocery shopping
And at some point: 13) rest.
sigh.
If the agreement is something we all agree to, then the ongoing service coordinator will have to add it into the service plan, which will make it a legally binding document. They would have to comply otherwise can be taken to court for failure to provide services.
So, to do list is getting very long and with short turn around time. 1) must call: Neurologist, Neurosurgeon, orthopedist, and pediatrician requesting a letter in support for increase. Invite them all to be available by phone April 8th to answer questions if necessary. 2) Speak with Advocate for Kids to find strategy for mediation session. 3) create copies of letters for mediator, DOE, Service provide, PT and for myself for day for mediation. 4) possibly ask HSS PT for letter to DOE as well.
On going list of things to do:
1) set up medical appointments for myself 2) change of address with all credit cards and bills 3) call access a ride 4) search for babysitter 5) call for SSI services 6) enroll in YMCA swimming classes 7) search for pediatric dentist and schedule first dental appointment 8) do taxes and set up payroll for babysitter 9) call HSS ask for additional physical therapy sessions 11) follow up with Urologist about medical records being sent to him before Friday's appointment re: UTI 12) go to pharmacy for ear infection medication, for myself...how does an adult get an ear infection?!?!?! :( 13) grocery shopping
And at some point: 13) rest.
sigh.
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