Today we arrived at Mt. Sinai at 6am. We called the night before bc Felipe started to vomit some of his milk. With his appetite being like bottomless pit, I just figured that he drank too much. No fever, no symptoms of being sick. We arrived at the first holding area, the nurse noted a slightly higher body temperature in one ear over the other. I still didn't think much of it. We were in the pre-opt waiting area, the step right before the actual procedure and the anesthesiologist tested his temperature again. 100.6. Procedure cancelled.
I am disappointed. Not only did I get very little sleep making it to the hospital on time, I just wanted to get the process rolling along. But then again, God's time, not mine, right?!
I left bummed but wrapped up Felipe and was about to go home, as the specialist had suggested to do when I decided I should listen to a little gut feeling that was saying, take a detour to the pediatrician's office. the specialist thought it was a 24 hour stomach bug that had been going around. By gut feeling, I mean, trying to listen to God for guidance. I had been praying that his fever wasn't indicating of anything else and suddenly I had an overwhelming desire to go see his doctor. I was able to squeeze Felipe in to her schedule to see him at her office. Within the one hour it took to see her, his fever was up to 102.4. He was immediately catheterized and his urine came back positive for infection. Why? IDK. I left a message with the urologist and returned home to get the antibotics for Felipe. The question that is bugging me is, Why? He has a couple of reasons why he will get a UTI: Spinal Surgery (bladder isn't emptying as fast as before), he has a duplex kidney, etc. I just don't want to go thru feeding him meds and dealing with vomiting baby almost every 2 weeks. Appointment with Urologist on 4/4, so lets see what can be done.
So, thank god, the fever didn't get as high as 106.5 like last time. We caught it "early" in the sense that with the medication his vomiting and general blah-ness should be over soon.
Packing update: not doing anything, just cleaning up after the baby's projectile vomit. sigh. I'm getting good in keeping it off my shirt.
Thursday 27 February 2014
Tuesday 25 February 2014
Cleared for Botox
Today we had two appointments: 1) second opinion from Hospital for Special Surgery and 2) Immunization and general 1 year follow up appointment.w pediatrician.
The second opinion doc also agreed with the same plan of action that the Mt Sinai doctor suggested. He was very thorough and very nice man who clearly knows what he is doing. its a hard decision to make as to whether we will go with treatment in Mt Sinai or in HSS. HSS is number one in Ortho in the nation. The doctor has been practicing for over 50 years, and he has a close relationship with the neurologist and neurosurgeon. The Mt Sinai doctor is eager to treat him, has a close relationship with the pediatrician, and was able to get a botox appointment this week!! i think for now, we're going w the doc from mt sinai bc she has to the soonest appointment to get the botox done in an operating room. there is no cutting just placement of needles into his muscles. but given that he will need precise shots and multiple shots, they will sedate him first.
Packing update: we are moving on march 1st, some people from church will be helping on friday to pack and to do what ever needs to be done last minute. And we're praying for good weather. Figure it will be cold but hopefully w no snow.
The second opinion doc also agreed with the same plan of action that the Mt Sinai doctor suggested. He was very thorough and very nice man who clearly knows what he is doing. its a hard decision to make as to whether we will go with treatment in Mt Sinai or in HSS. HSS is number one in Ortho in the nation. The doctor has been practicing for over 50 years, and he has a close relationship with the neurologist and neurosurgeon. The Mt Sinai doctor is eager to treat him, has a close relationship with the pediatrician, and was able to get a botox appointment this week!! i think for now, we're going w the doc from mt sinai bc she has to the soonest appointment to get the botox done in an operating room. there is no cutting just placement of needles into his muscles. but given that he will need precise shots and multiple shots, they will sedate him first.
Packing update: we are moving on march 1st, some people from church will be helping on friday to pack and to do what ever needs to be done last minute. And we're praying for good weather. Figure it will be cold but hopefully w no snow.
Monday 24 February 2014
Felipe meets a yoga ball...
Today's physical therapy session we reviewed all the yoga ball exercises that we can do w Felipe. Initially I was a little worried about his stability on the ball and grimaced at every little lopsided move but he loves it. And it's a great way to strengthen his muscle tone especially when it comes to his hips. Abuelita Luz has to step out of the room, she can't keep from yelping in fear of seeing him fall. Abuelita Luz brought us her yoga ball and its a perfect height for Felipe.
Yoga ball exercises:
All exercises should be done w hip-helpers so that Felipe can have extra support on his knees and hips (and his foot braces). First stretch each ankle for 2 minutes each to get feet closer to 90 degree angle before putting into foot brace.
1) Bouncy-bouncy: place Felipe seating on top of ball. Facing Felipe, kneel close enough that he can place his feet on thighs at 90 degree angle. Encourage Felipe to bounce using his muscles to push-off w feet. Repeat 10 times.
2) Push Away: sit on floor w Felipe and have him face the ball. Keeping Felipe seated on your lap, have him push the ball away w his legs. Start at 90 degree and having him straighten his legs.
3) Bone Bounding: place Felipe laying down on ball. Roll him forward and back, having him land on his feet w a little bump. The 'bump' will help w re-stimulate and remind him of this nerve connections with lower parts of his leg.
4) Wheel barrow: same as before but with felipe laying on the ball
....that's all for now. will practice with him soon.
Yoga ball exercises:
All exercises should be done w hip-helpers so that Felipe can have extra support on his knees and hips (and his foot braces). First stretch each ankle for 2 minutes each to get feet closer to 90 degree angle before putting into foot brace.
1) Bouncy-bouncy: place Felipe seating on top of ball. Facing Felipe, kneel close enough that he can place his feet on thighs at 90 degree angle. Encourage Felipe to bounce using his muscles to push-off w feet. Repeat 10 times.
2) Push Away: sit on floor w Felipe and have him face the ball. Keeping Felipe seated on your lap, have him push the ball away w his legs. Start at 90 degree and having him straighten his legs.
3) Bone Bounding: place Felipe laying down on ball. Roll him forward and back, having him land on his feet w a little bump. The 'bump' will help w re-stimulate and remind him of this nerve connections with lower parts of his leg.
4) Wheel barrow: same as before but with felipe laying on the ball
....that's all for now. will practice with him soon.
Thursday 20 February 2014
Glory to God, Equipment is approved!
I received a call yesterday from the ongoing service coordinator with early intervention. She had received a copy of the email that I had sent regarding having his equipment request rejected. She informed me that they submitted the packet that day and was approved the same day! yea!! So we should be getting a specialized stroller and gait pacer walker in the next few weeks.
I'm very excited!! Seeing Felipe stand is already a great moment. he doesn't do it without assistance. He can't bend his knees yet and plant them to push up and stand up on his own. Mostly bc his feet are pointing downward and do not go to the 90 degree angle needed to stand. However, the desire to stand and walk are there. So hopefully with the gait pacer, he can develop even more freedom to wander the house.
his area for exploration has gotten smaller over the last couple of weeks. We are slowly packing to move on march 1st and the house is filled with boxes.
Tomorrow, we have physical therapy again at Hospital for Special Surgery. He was given a tape to see if that would help. He didn't have any allergic reaction to it so I'm curious to see how it will help him re-adjust himself. A progression that I've seen is that he lifts his knees a little closer to his chest. This is a vast improvement from not being able to move his legs up at all. This improvement allows him to crawl faster and to build up muscles necessary to take steps. Once again, the feet is hindering his progress. lets hope that we can resolve that soon!
Many thanks to friends and family who have been praying for progress with Felipe. Glory to God for making all the pieces fall in to place at His divine time.
Next steps: 1) Ortho Second opinion appt 2/25 2) physical and immunizations 2/25 3) call the equipment supplier and inform him of new address change 4) complete packing 5) get yoga ball for my home to do exercises with Felipe 6) (its been on the list forever!) Join YMCA and enroll in swim class! 7) looking to attend a parents w special needs children mtg that I was just told about in Brooklyn Tabernacle. Hopeful to find some guidance and support from people who are going through similar situations.
I'm very excited!! Seeing Felipe stand is already a great moment. he doesn't do it without assistance. He can't bend his knees yet and plant them to push up and stand up on his own. Mostly bc his feet are pointing downward and do not go to the 90 degree angle needed to stand. However, the desire to stand and walk are there. So hopefully with the gait pacer, he can develop even more freedom to wander the house.
his area for exploration has gotten smaller over the last couple of weeks. We are slowly packing to move on march 1st and the house is filled with boxes.
Tomorrow, we have physical therapy again at Hospital for Special Surgery. He was given a tape to see if that would help. He didn't have any allergic reaction to it so I'm curious to see how it will help him re-adjust himself. A progression that I've seen is that he lifts his knees a little closer to his chest. This is a vast improvement from not being able to move his legs up at all. This improvement allows him to crawl faster and to build up muscles necessary to take steps. Once again, the feet is hindering his progress. lets hope that we can resolve that soon!
Many thanks to friends and family who have been praying for progress with Felipe. Glory to God for making all the pieces fall in to place at His divine time.
Next steps: 1) Ortho Second opinion appt 2/25 2) physical and immunizations 2/25 3) call the equipment supplier and inform him of new address change 4) complete packing 5) get yoga ball for my home to do exercises with Felipe 6) (its been on the list forever!) Join YMCA and enroll in swim class! 7) looking to attend a parents w special needs children mtg that I was just told about in Brooklyn Tabernacle. Hopeful to find some guidance and support from people who are going through similar situations.
Sunday 16 February 2014
I learned it from watching you!!!
Ok, so maybe only 80's babies will get that reference to the anti-drug campaign...but, Felipe is a pincher. And after thinking about our last appointment with the neurologist, I guess he learned it from it happening to him. Usually in order to test him for sensation, they pinch his inner thigh. And now, when Felipe wants to crawl and I have the audacity to change his poopy diaper (his name is Lord Poops-a-lot for a reason), he bites or pinches me. I have bruises all over my forearms and neck. He goes for the weak spots and boy does it hurt.
God grant me patience with all these little pinches bc they hurt!! The biting is also pretty bad. Felipe has gone thru alot and now that he is realizing that he is misunderstood or not understood at all he is very frustrated. I have been told to teach him sign language. I've tried with key words like bottle, water, more and all done. So far, no signs that he gets what I'm trying to say to him. He often sounds like he is on the verge of breaking into a whole conversation. But the reality is, right now he has three words, Mama, DaDa, Bye bye. Sometimes he says "Hi" and he gets exited to see his brother and he might say Ale (Alex seems too complicated, Patrick is even harder) He gestures like he really wants you to follow what he is saying but alas, I don't speak baby, which results in me getting bitten.
Yesterday, he went to bite me bc I had taken away a sharp object from him, he went to bite me and instead bit his own arm. Oh how he cried, and how I tried to suppress my giggling. He was mad at me and at himself. He is such a cutie and usually on his best behavior with friends and family who visit. But when it comes to mami and papi, he is all about biting noses, pinching arms and throwing his back in protest.
here is the little wiggly worm looking cute...
God grant me patience with all these little pinches bc they hurt!! The biting is also pretty bad. Felipe has gone thru alot and now that he is realizing that he is misunderstood or not understood at all he is very frustrated. I have been told to teach him sign language. I've tried with key words like bottle, water, more and all done. So far, no signs that he gets what I'm trying to say to him. He often sounds like he is on the verge of breaking into a whole conversation. But the reality is, right now he has three words, Mama, DaDa, Bye bye. Sometimes he says "Hi" and he gets exited to see his brother and he might say Ale (Alex seems too complicated, Patrick is even harder) He gestures like he really wants you to follow what he is saying but alas, I don't speak baby, which results in me getting bitten.
Yesterday, he went to bite me bc I had taken away a sharp object from him, he went to bite me and instead bit his own arm. Oh how he cried, and how I tried to suppress my giggling. He was mad at me and at himself. He is such a cutie and usually on his best behavior with friends and family who visit. But when it comes to mami and papi, he is all about biting noses, pinching arms and throwing his back in protest.
here is the little wiggly worm looking cute...
 |
| What me?! I am too cute to be a biter! |
 |
| Bite mark of Lord Poops-a-lot, 4 teeth right now, 2 on the way, almost fully cut through the gums |
 |
| It's cherry's...although he sorta looks like a vampire here. |
 |
| Felipe looking cute. |
Friday 14 February 2014
Another long day....but good results
Met with new neurologist. She was very nice and professional and we will be following up with her in 6 months time. She assured us that things seem to be progressing in the right direction. The swelling is decreased and there is progression in his movement as soon as 4 months. While it feels like an eternity to me, it really has only been a little over 4 months since his spinal surgery. She strongly recommends intensive physical therapy in order to keep working him muscles and bones. The final picture of how he would be like, for a life time, can not really be assessed until he is about 2 years old. So, I'll take it as good news. Praise the Lord for the recovery he has had so far, and please praying!!
Since we got the ok from both the neurologist and the neurosurgeon, we should be ready to botox his heel cords soon. I would like to get a second opinion about his overall treatment first. We are scheduled to meet with another Ortho on 2/25. On 2/25 he will be also be getting some vaccinations.
Early intervention, smh. They rejected the request for the specialized stroller and the walker based on the fax not coming in properly. It gets me so mad. 16 days to tell me that the fax needed to be resent. but what is even worse, they are saying to resubmit the whole packet again. EI will be hearing from me, once I get over the soreness in my body. I need more energy, I might even have to start drinking coffee! (say it aint so!)
HSS PT went well. He is buckling at his knees which makes it hard for him to take an extra step. So Kinetic (?) tape was suggested. It apparently works similar to bengay. The tape looks like medical tape. you place it along the muscle you want to focus. with each move of the muscle the tape heats up a little (like bengay) and the baby will start to realize that muscle being in use, or not in use. First step, we trying to see if he is allergic to the tape. a small patch was placed on his skin. If he develops a rash, its a no go. but fascinating addition, if he can tolerate it. Oh, before I forget, both PT told me to get a massager or a vibrator for his muscles. the Vibrating will help stimulate his muscles. So I'm off to buy a portable massager.
I had to walk in the snow yesterday and today. Well pushing a stroller in it fells like pushing a stroller in sand, exhausting. I'm tired. Advil, hopefully taking effect soon. Its a reminder that I have to get into better shape and that i need to sign up for assess-a-ride. Trekking in a blizzard can be avoided if I apply! Now to find the time between preparing for a move and handling Felipe. sigh.
on that note, gnite. next steps: 1) Ltr to EI requesting equipment be ordered ASAP 2)apply to assess-a-ride 3) apply to SSI 4) enroll in swimming classes at YMCA 5) schedule my own medical appointments before returning to work 6) buy a handheld massager. 7) get yoga ball to my house to practice how felipe responds to sudden falls/movement--he needs to get better at protective reactions. 8) pack 9) get over soreness!
Wednesday 12 February 2014
UPdate: cold and sleepy.
So much has happened I haven't had a chance to update you all, my apologies.
First, we are moving on March 1st, to a new apartment a few blocks where we are living now. I am excited to get away from the marijuana concern but packing is a big challenge with a small child and all his demands. Fortunately very good friends have been helping either watching Felipe while I pack or jumping in and packing my stuff. The help keeps coming in, so thank the Lord for just good friends and their helpful hearts during these tiring days.
Secondly, we've seen a bunch of doctors and we have appointments to see a bunch more. met with the Ortho at mt Sinai. She explained that Felipe does have a hip displacement of about 30% on both hips. Normally it would require surgical intervention. She believes it was caused by a gradual pull by the tighten muscles. Tight muscles bc the of limited lower mobility, again going back to the spinal issues. Since the spine is still recovering, she doesn't want to repair the hips until the recover of the spine is complete. in the meantime we will keep monitoring its progression. The focus of her help will be on his feet until then, he needs to get his feet/leg muscles more relaxed and needs to re-strength and balance his leg muscles. So Botox is a definite option. to numb some of his tighter muscles and getting his body to instead to rely on his weakening muscles will help him as he progresses.
We met with the neurosurgeon today. MRI shows that the spinal cord swelling is diminishing. The lipoma remains the same size and is not in the way of the spinal cord. The spinal cord is not as swollen but still has an area where its a little swollen. While its only been a few months, doctor is hopeful we are in the right direction. So no more surgical intervention, at this point. Wants to begin to follow up every 3-4 months. He wants to touch base with Ortho before setting down a follow up appointment. Setting appointments several months out is a good sign!! progress!
So I'm having a moment of "am I an over-the-top-parent" The Ortho in Mt. Sinai is "fine" She was very nice, professional, answered questions, read through the medical records, very patient and kind with the baby. I had only one concern. I asked her, on behalf of the therapist, if he should get theratogs, and she didn't know what they were. I asked her about rehabilitation exercises and restructuring or adjusting exercises bc the displaced hips and I got a shrug and, "you can do it all" Part of me thinks, its just the way she speaks or how she presents, but it bothers me that she isn't well versed on the rehabilitative part of this, especially since we have issues with braces. I have asked her if he needs new ones and she says, braces aren't to be used. But I tell her that both PT in HSS and EI use them, she is like, um, ok, but no point in doing so. So?! I'm wasting my time keeping my baby standing for 30 minutes at a time. Either way, I have a second opinion 2/25 to see if another Ortho would recommend anything different. The other othro, has the opposite problem, he has been working for over 52 years as a doctor and is no longer taking any surgical patients. But he is well versed in all things rehab for ortho patients. I pray that God calms my nerves and help guide me to the right doctor who can really help Felipe.
Talk about frustrating...the department of education rejected the request for equipment bc the fax of the documentation was crumbled on one page and bc supposedly the forms were too generic. I have to say, it appears that the person rejecting was just trying to clear their desktop bc there was no error and now his application is just lingering. I need to write a strongly worded email to this person. once I gather enough strength and stop yawning every 10 minutes.
tomrw we have an appointment with the new neurologist. They have a questionnaire that seems to be a small novel, I haven't finished it yet and I'm so sleepy. One thing I notice is that despite trying to be as informed as possible, I still don't really know the final or formal diagnosis is for Felipe. Some say Spina Bifia. Some are saying that its a lipoma in the cord. Now there is a new diagnosis that he might have been born with bad lower nerve development and I just think...will this ever end! in the beginning and end, God has had his hand in it all, and that should give me a sense of relief. Sometimes, It doesn't but working to remaining positive. (awake and positive)
Traveling in this winter mess in NYC is difficult. I have a couple of things on my to do list that I regret putting off as long as I have. #1 applying to assess-a-ride. Apparently they pick you up and drop you off at medical appointments. that would have made a big difference today where I got a ride into the city but took 3 hours to get back home. #2 applying to SSI. Apparently even if we don't qualify they might be able to direct us to more resources #3 follow up with order of stroller and walker (strongly worked email)
Oh and yea, #4 continue packing 2 bedroom apartment #5 call uhual, make reservations, #6 call student loans ask for forbearance #7 look up internet resources for kids with similar diagnosis #8 figure create ways to cook food currently in pantry and fridge so I don't have to shop til after we move. #9 skim some book called baby whisperer bc Felipe is getting out of control with biting and pinching. # 10 stay awake long enough to make a dent in to-do list.
First, we are moving on March 1st, to a new apartment a few blocks where we are living now. I am excited to get away from the marijuana concern but packing is a big challenge with a small child and all his demands. Fortunately very good friends have been helping either watching Felipe while I pack or jumping in and packing my stuff. The help keeps coming in, so thank the Lord for just good friends and their helpful hearts during these tiring days.
Secondly, we've seen a bunch of doctors and we have appointments to see a bunch more. met with the Ortho at mt Sinai. She explained that Felipe does have a hip displacement of about 30% on both hips. Normally it would require surgical intervention. She believes it was caused by a gradual pull by the tighten muscles. Tight muscles bc the of limited lower mobility, again going back to the spinal issues. Since the spine is still recovering, she doesn't want to repair the hips until the recover of the spine is complete. in the meantime we will keep monitoring its progression. The focus of her help will be on his feet until then, he needs to get his feet/leg muscles more relaxed and needs to re-strength and balance his leg muscles. So Botox is a definite option. to numb some of his tighter muscles and getting his body to instead to rely on his weakening muscles will help him as he progresses.
We met with the neurosurgeon today. MRI shows that the spinal cord swelling is diminishing. The lipoma remains the same size and is not in the way of the spinal cord. The spinal cord is not as swollen but still has an area where its a little swollen. While its only been a few months, doctor is hopeful we are in the right direction. So no more surgical intervention, at this point. Wants to begin to follow up every 3-4 months. He wants to touch base with Ortho before setting down a follow up appointment. Setting appointments several months out is a good sign!! progress!
So I'm having a moment of "am I an over-the-top-parent" The Ortho in Mt. Sinai is "fine" She was very nice, professional, answered questions, read through the medical records, very patient and kind with the baby. I had only one concern. I asked her, on behalf of the therapist, if he should get theratogs, and she didn't know what they were. I asked her about rehabilitation exercises and restructuring or adjusting exercises bc the displaced hips and I got a shrug and, "you can do it all" Part of me thinks, its just the way she speaks or how she presents, but it bothers me that she isn't well versed on the rehabilitative part of this, especially since we have issues with braces. I have asked her if he needs new ones and she says, braces aren't to be used. But I tell her that both PT in HSS and EI use them, she is like, um, ok, but no point in doing so. So?! I'm wasting my time keeping my baby standing for 30 minutes at a time. Either way, I have a second opinion 2/25 to see if another Ortho would recommend anything different. The other othro, has the opposite problem, he has been working for over 52 years as a doctor and is no longer taking any surgical patients. But he is well versed in all things rehab for ortho patients. I pray that God calms my nerves and help guide me to the right doctor who can really help Felipe.
Talk about frustrating...the department of education rejected the request for equipment bc the fax of the documentation was crumbled on one page and bc supposedly the forms were too generic. I have to say, it appears that the person rejecting was just trying to clear their desktop bc there was no error and now his application is just lingering. I need to write a strongly worded email to this person. once I gather enough strength and stop yawning every 10 minutes.
tomrw we have an appointment with the new neurologist. They have a questionnaire that seems to be a small novel, I haven't finished it yet and I'm so sleepy. One thing I notice is that despite trying to be as informed as possible, I still don't really know the final or formal diagnosis is for Felipe. Some say Spina Bifia. Some are saying that its a lipoma in the cord. Now there is a new diagnosis that he might have been born with bad lower nerve development and I just think...will this ever end! in the beginning and end, God has had his hand in it all, and that should give me a sense of relief. Sometimes, It doesn't but working to remaining positive. (awake and positive)
Traveling in this winter mess in NYC is difficult. I have a couple of things on my to do list that I regret putting off as long as I have. #1 applying to assess-a-ride. Apparently they pick you up and drop you off at medical appointments. that would have made a big difference today where I got a ride into the city but took 3 hours to get back home. #2 applying to SSI. Apparently even if we don't qualify they might be able to direct us to more resources #3 follow up with order of stroller and walker (strongly worked email)
Oh and yea, #4 continue packing 2 bedroom apartment #5 call uhual, make reservations, #6 call student loans ask for forbearance #7 look up internet resources for kids with similar diagnosis #8 figure create ways to cook food currently in pantry and fridge so I don't have to shop til after we move. #9 skim some book called baby whisperer bc Felipe is getting out of control with biting and pinching. # 10 stay awake long enough to make a dent in to-do list.
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