Results are in...

...MRI is stable.  Its where it needs to be for Felipe having had surgery in December 2013.  What a relief!

So what's next?  1) We will need to get the MRI report to the pediatrician and the orthopedist.  Now that new spinal issues have been ruled out we will need to tackle the issue of his hips.  2) see if we can get thera-togs. They are these strip of cloths that line up in a particular way to give the body extra support in standing up straight, realigning knees and hips.  The physical therapist is ordering them through EI, so the paperwork is overwhelming at time. 3) Follow up with neurosurgeon on 2/13.  4) new patient appointment with new neurologist at Cornell on 2/14.  5) Urology appointment in April.

We got Hiphuggers in the mail!  finally, the order was placed a while ago.  But they are basically spandex shorts that are sewn to the knees.  It limits the hips from getting too wide.  The physical therapist saw it and thought they were great and were helping him with his leg positioning while he crawled.  but he can only wear it for 30 minutes at a time.  We want the weaker muscles to get stronger and if we leave them on for too long his body will just get dependent on the support given by the shorts.

He has done 30 minutes in the stander, he was having a rough time the last 10 minutes.  I think I need to plan ahead and try to get good TV shows or good food for him to just want to stand in one spot for so long.  He then spent 30 minutes in the hip huggers, he seemed happy to be able to crawl around.  I also got a mirror so that he can see how he is to crawl.

He is a little slower to take steps.  mostly bc he can't feel his feet so taking a step is hard to get him to understand.  now with the mirror, we tap the floor w his foot, then take a step, and hoping he will look to feet and wonder what it has to do next.

on that note, time to go and stretch some more.  back to work!

Bday Pics

Patience is a virtue

A virtue I am in short supply of.  So I am supposed to get a phone call regarding the MRI results to see how the baby's spine is doing.  I haven't.  I am trying to exercise patience and wait to call the neurologist for the final results on Tuesday at 3pm.

Spoke with urologist on Friday, since stent removal went well, next appointment with doctor won't be until April.

1/25: Saturday was his birthday party.  Felipe was very happy and well entertained. He was passed around, among friends and family, for over 4 hours.  He was in a good mood and even skipped his usual nap bc he wanted to remain in the party. (photos in separate post)

1/26: Felipe had physical therapy today.  The physical therapist noted that he has an scrape on his foot.  It was created when Felipe crawls, his toes are curled in ward, causing a bone to stick out more than usual.  And so there is an area of greater friction.  He wears socks in the house to crawl so at least he has that protection. I was asked to find "soft shoes" for him.  I'll try to see what I can find.  His feet are pointed downward that more shoes that I put on, just slip off. I've added a photo here for purposes of documentation.  I think its healing as long as we give the wound some time to dry up.

Wound from crawling 1.26.2014

I'm also attaching a photo of Felipe in his new stander.  He is strapped in, with his foot braces on, and he has to stand on his own weight for several minutes.  The first regime will be to stand for 30 minutes and then progress to standing for an hour.  Needless to say I have to make sure I keep him entertained.  For 15 minutes, we rolled a ball to each other.  And for the remaining 15 minutes we watched Shrek the Musical.  I'm grateful for Netflix' streaming, it was a Broadway show, and well, i think it looked so weird that Felipe couldn't turn away from the screen.  Tomorrow, another 30 minutes.

Felipe in Stander for first time

Felipe confused that table tray is clear

1/27: to do: 1) wait patiently for MRI results from Neurologist (or if no phone call by 3pm, telephone stalk them till I get a result). 2) Trying to get Felipe some out door time, he likes the fresh air.  its just hard when the windchill factor is below zero.  Going to join the local YMCA, they have swimming classes that start in March and family swim time every day.  Looking forward to taking him to the pool again. 3) Stretches every 30 minutes.  4) get a full length mirror as a part of rehabilitation-- supposed to help him see himself crawl and autocorrect when his hips get too wide.  5) Stander 30 minutes  6) use hot/warm towels on calfs and hips to loose muscles more and help with spasms.

medically cleared for MRI

...we are a go for the MRI on Friday.  Felipe will be sedated and have a lumbar scan.  basically his back and spine to see how and if the swelling has decreased.  So it will be his birthday, and most think I'm mean for scheduling an MRI on his day, but being realistic, he won't remember it.

MRI will take approximately 2 hours.  unfortunately he wont be able to eat after 1am.  no water after 7am.  not totally terrible if he remains asleep for the night and the car ride over to the hospital.

the bitter cold doesn't help.  I have him in 3 layers but he starts to argue and runaway from his snow suit.  fortunately he is very warm and I haven't felt him cold at all.  I freeze my hands pushing the stroller and he is nice and toasty in the several blankets.

We are waiting for the physical therapist.  his first appointment in a long time.

Felipe is feeling good and back to his playful manner.  He somehow got into my bag, took out my wallet and pulled out my credit cards.  Funny, until I got to costco and realized that I couldn't pay for items bc I had no credit cards/atm cards in my wallet.  When i got home, I found them all neatly stored under the rug.  sigh.  Its funny when I was at home warm, not so funny when I was freezing running to and from costco.

Felipe said his first intended sentence.  Herminio (why he favors his father so much!!) was getting out of the car, and felipe yelled "bye bye Da Da" waved his hand and then cried for a block.  he really gets sad when herminio leaves.  last night while herminio was on call, felipe would crawl over to our room looking for Herminio.  Pointing to the bed.  sweet, Felipe loves his daddy.

We have a little swimmer!!!

Felipe loved his time in the pool. we entered slowly and he had a little serious face at first but once another kid swam by him, he started to laugh and tried to "crawl over" to that kid.  I was holding on to him for dear life.  They say that babies know how to swim instinctively but I wasn't going to test out that theory.  We bounced up and down and had a great time. I'm bummed I didn't get any photos but I'm excited that he loved swimming so much.

Felipe was supposed to have therapy today but since the medical clearance didn't go thru, the therapist did not show.  I'm hoping that resolves by tomorrow, physical therapy is so important.

Felipe is getting better about taking his medication, a couple more days left.

going for a swim...

We were discharged on thursday night, around 6pm.  We have been having trouble with neighbors so hence a delay in an update.  Felipe went home with Antibiotics and he is taking them regularly.  3x a day, and has gotten used to taking medicine.  Before it was a struggle, at least two people needed to hold him down.  Now with constant reminders that its good for him, he stops struggling but still shakes his head a lot.

We left around 6pm on Thursday bc our pediatrician did such a great job in getting all specialist to see Felipe before he left.  Even the Orthopedic surgeon who was in surgery most of the day.  She came after a very long case and looked over Felipe's feet and hips.  So, at this point, his  muscles are starting to get so stiff that they are pulling his hips out of their joint.  For babies his age this usually means more surgical intervention, however, the Ortho and pediatrian is hopeful that with intensive physical therapy and perhaps botox, he can avoid going into surgery.

So now I have a timer, that goes off every 30 minutes, where I stretch out his hips and feet.  We want more flexibility so that the braces can do their job.  At this point, she told me to not use the braces, since they are only giving him blisters and the flexibility in the feet aren't there.  She also told me to come back to see her after the MRI on the 24th.  She wants to rule out officially (she pretty much things its not the issues but is overcautious to make a decision without seeing the films) that the fatty tumor didn't re-tether the cord, hence affecting his hips. Re-tethering of the cord is something that we were warned about.  the usual expected time for that would be 30 to 50 years, so we are hoping for the best. And clearly re-tethering would mean he would have to be operated on again.

We are still scheduled for the MRI on 1/24.  I have to call the urologist for a follow up appointment sometime next week as well.  Felipe has been cleared for physical therapy again, with no real restrictions given he has no stent right now. MRI is so taht we can see how the spine is doing.  If the swelling has gone down we are the right direction

During all this, I am looking for a new apartment, one where the neighbors choices don't interfere w our ability to enjoy our space.  Thanks to members of the mission ministry at Brooklyn Tabernacle Church, we've got some momentum in beginning our search.  Thank you for the brothers and sisters for their prayers and their encouragement.  I've got a lot of my plate but made so much easier with the friendly reminder that god's strength will get me through it all.

We've off to go swimming, its felipe's first time.  I'm excited to see how he will react to it all.  My hope is that he will love it and I can finally get around to enrolling him in swim class.  Swimming will not only build muscle tone it will help him relaxing his muscles.

FELIPE SAYS IGYGF;VC;TCT

Fever free!!

Free of fever for 20 hours. Urologist wants no fever for 48, so we keep on waiting. We are isolated from rest of patience bc of uti. I dont know why its cause for isolation but not really minding it. Ive beeen told to stretch his feet every 30 mins. Ortho will be by again to see his feet. While he is inpatient might as well try to get seen by doc regarding his muscle contraction. As the PT from early intervention had explained they have a couple of options. They can cast his feet. Put him in a little cast, making sure his foot is at a certain angle. They cut the cast after 2 weeks an then position the foot again in an angle closer to 90 degrees. It will probably take 3-4 casting. Or 6-8 weeks. The other alternative is to inject botox into the muscle that is extra tight and once relaxed keep up w intensive physical therapy. And lastly, surgery, cut the muscle that is contracted and let it heal in normal position. I of course am done w surgeries and hoapital stays so i will be massaging and atretching bery 30 mins in the hopea that surgery isnt necessary.


Todays specialist: nuero, ortho, and physical therapist. Infectipus deseases determined the bacteria and have changed the antibotic once more. Felipe is doing well.

Goal for today, have felipe stretch every 30 mins, have felipe eat twice today solid food, do standing exercises once. Its hard to manuever is small space and hospital floors arent crawl friendly. Abuelita Luz elsa brought felipe a mat to crawl on, very helpful!!

Felipe's great uncle Santos visited us with his pastor. They prayed for us and entertained felipe for a wwhile.

Felipe is sleeping in today, what a relief. He went to sleep at 1:30. Hoping he gets a good 9 hours so he isnt cranky. Here's hoping the doctora rousing and the nursing shift change doeant wake him up!

fever strikes again....

Felipe didn't seem himself but he sleep scheudle was off so I was attributing his crankiness to not being able to fall asleep.  instead around 1, I noticed he was very warm.  So we have been alternating Tynenol and Motrin, fever still hovers around 102.  I've given him 3 cool baths, and doesn't seem to help either.  he is moaning and uncomfi.  Waiting to hear back from pediatrian.  We might have to go to the ER again, get him catherized and see if its another UTI.  And we had made grand plans to go swimming on saturday but instead we will be in cool baths, tynenol, motrin and trying to take felipe's temp until further notice from the doctor.

1/12: saw pediatrian sunday morning. Did a urine test. Definately a UTI. She sent out urine for culture to determine which strain of bacteria. Sent us home w antibiotics. Gave him first dose at 11am. But by 6, still spiking fevers, vomitting and not producing wet diapers. Called urologist and pediatrian, told to go to emergency room. Here we had a delemea, urologist in cornell hospital. Pediatrian is in my sinai hospital. Which emergency room to take him to?!  We decided on Mt Sinai bc while we were pretty sure it was a uti, if the slim chance it was not, pediatrian would be best person to coordinate multiple specialists. 

We arrived at the emergency room, felipe's fever had climbed up to 106.5. We were seen immediately and given antibotics, motrin. After he vomited the motrin, they gave him an IV and w a dose of motrin in the IV. His fever went down within the hour. He was admitted to ICU at 2:30 am.    He was seen by urology, infecious deseases, and pediatric icu attending. After he got the fever down,  felipe was back to his flirty and smily self, and most were confused why he was in icu. Hewas  stepped down to regular pediatic unit. 

1/13:  ive lost track of dates. Spent day w specialist and determining where stent will be removed. Decided to remove at mt sinai. Felipe will remain in hospital until stent is removed. It can only be removed if he has 2 days of no fever. So far, last fever at 3 pm, 102 only. 

1/14: fever spiked againbut to 101.9. An improvement. Felipe pulledout his IV in an attempt to try to crawl aroundhis crib. He looks like he has bad case of. Cabin fever. Specialst for today is neurology, orthopedist, urologist and infectious deseases. No determination yet the specfic bacteria that is present. But current antibotix is helping. 

Felipe is sleeping comfi. He is drink 2-4 oz. which is a lot considering he is still on IV drip. Ihave a small pull out chair which is super uncomfi. We'll be here till thursday. We are in isolation, which the upside, no roomate. But everyone who walks in has to be masked, and gowned. Poor felipe freaksout seeing people. 


No access to computer. Last entry till find one. Sorry for typos. Pls pray for felipe's speedy recovery and that God provide all his medical staff w wisdom and compassion. 



1/13



We arrived at mt sinai hospital at 10:30p. He had a fever of 106.5. He was given mottin, which he

Its in the mail....

...a specialized stroller and a walker has been ordered and we are just waiting for them to arrive.  The stroller will take about 3 months to get here but the walker should be here within the next month or so.  the walker looks like a regular adult walker with the exception that it has little straps for his feet and arms.  It has a saddle, in case he falls, to catch the majority of his weight and it also comes with a chest harness so that he can have the proper upper body position.

Felipe is progressing, he is eager to stand and to walk.  Our exercises go smoother than the stretching.  So far he likes the idea of walking but bc of his feet being in the position they are, he can not do walking or standing without the braces.  otherwise he can injury himself.  So when he is out of the braces he tries to stand up but ironically I have to discourage it bc he doesn't have the booties on.  I only but the booties on to do the standing and walking exercises.  He doesn't seem to mind them too much but the blisters are still red, and haven't really improved since the last photos.  Yesterday, he became intrigued with his feet, he even took off one sock!  that's real progress, bc now he knows he has feet and is beginning to explore them again.

Today we have therapy again, its a work out for both Felipe and Mami.  We have a scheduled appointment for Hospital for Special Surgery on Friday, our last one there since insurance will not cover both HSS and Early intervention.  I've scheduled an appointment with a Ortho, I'm hoping they will give a quick response as to if we need a different set of braces/booties.  The physical therapist seems to think his feet should be in a cast, as if he broke his feet, and kept in a cast for 4 weeks.  Lets see if the doc agrees.  If that happens, I'll send photos, bc the idea of it seems sad and a little funny to me too.  The upside of casting is that he would be able to walk, stand and crawl with no issues of whether he has the braces on or not.

God willing we'll have an answer by next Monday.  We are also going to see his pediatrician.  Again, sometimes the hardest thing is to coordinate the docs to talk to each other.  I just need to update the pediatrician and to check in if he needs any other follow ups.  He will also need to be cleared for sedation taking place on 1/22 and 1/24.  On the 22nd he will have his stent removed and on the 24th he will have an MRI to take a look at the spinal cord progression.  Kinda sucky to have an MRI on his bday but then again, it will make his party all that more memorable-- more to celebrate :) I can't believe he is going to be a year old!, the time definitely flies by.

Pls pray that Felipe returns to a normal sleep schedule-- I'm so tired.  I'm not sure if his sleep disruption is due to the physical therapy, but I suspect his muscles are keeping him up at night, maybe cramping? Idk. Thank you for your continued prayers for his speedy recovery and progress

Photo documentation and getting into a routine...

Routines are the way to go with kids and for efficiency for adults...or so I am told.  Unfortunately, having a child who just got out of the hospital, had fever and is taking antibiotics, the routine and usual sleep schedule is out the window.  The last few days, Felipe has gone to sleep around 1:30-2am.  Waking up at 10am and then maybe taking a nap at 3 or 7pm.  :(  The new exercises are also affecting him bc after an hour or so of strengthening exercises and stretching he gets very tired and takes a very long nap.

I've been told by EI to start to document Felipe's blister recovery.  I hope to get an appointment with an Orthopedist this Monday to start keeping track on how these braces can be best used.  Right now the PT is saying that he should only  use them to do standing exercises.  I was hoping to get braces so that he can sleep with them and help him overnight.  Given his limited sensation, meaning he won't complain if a blister is starting to form, we can't do things overnight.  I get that, but at the same time I want to use every waking hour to make sure things are being done to return his sensation and stimulation to his feet.

I've also have advanced his pediatrician appointment in the hopes to get her to really rally the specialist and try to get everyone on the same page.  I was under the mistaken belief that the neurosurgeon was supposed to rally everyone to follow up with  Felipe.  I've been informed its the pediatrician.  Things have to be centralized and so, I plan to sit down with her and try to see what else we can do for Felipe's health.

Monday: Physical therapy again at 4! I hope to complete all my assigned stretches and exercises by 4!

Blisters on Feet 1.5.2014

Blisters on Feet 1.5.2014

As requested by some, this is Felipe's spinal surgery scar.  its healed nicely!  his kidney scar is so small in comparison. I'll update soon with it, he has been getting quicker about rolling away from me ...  1/5/2014

First day of the year, first day of exercises....

Felipe joins everyone else who is trying to get fit this year...working out on the first day of the New Year.  I'm glad to share with you the exercises not only to keep you updated but so that I can remember what the PT shares with me.  I'm trying to video the PT but she seems uncomfi with the idea for now, yet, I'll keep trying!!

First, Felipe reminds everyone the importance of stretching.  It helps get circulation going and helps with the exercises.

1.  Massage Lower legs:

Cupping his calf muscle with my hand, but not touching the area in front, just the back, I open and close hands in a wave like motion. 15 sec, 10 times

2. Massage Upper Legs:

Knead the upper legs, quad area, stimulate to get the muscles active and warm. 15 sec, 10 times

3.  Tickle tickle and pull in

I place Felipe lying down on the floor or changing table, I tickle his inner thigh, wait for a response.  If no response, I pull in his thighs.  This causes him to remember sensation and to work on using his abductors (I'm not too sure about the scientific word, maybe I'll just call it the Suzanne summer-tight -master muscle, you know the one you use to pull in your tights)

4. Straight and Flex

Straighten the left leg, lock the knee, cup heel of foot and push back to 90 degree angle.  Hold position for 15 seconds.  repeat 10 times.  Repeat on right foot.  Since Felipe is contracted, he can't do the full 90 degrees but the goal is to get his muscles more relaxed slowly to eventually complete the stretch.

5.  Bend and Flex

Bend the left leg at a 90 degree angle.  Hold one hand under the knee, keeping it bent.  with other hand, cup the heel area of the foot and push back to 90 degree angle.  repeat 10 times, repeat on right foot

6 Toes flex

Move the big toe up and down.  Gentle pull toe up towards his torso, hold position.  10 times for 10 seconds.  Since one area of Felipe's muscles are tense, it pulls his toes down and the muscle that would pull it up is relaxed bc there is no stimulation.  I have to remember the toes bc too much time in a contracted position can begin to affect the bones.  Must be gentle bc too rough and can lead to bone or ligament damage.  Felipe won't complain w pain bc he doesn't feel much in either toe area.

7.  Toe Splint

Holding left foot in my hand, imagine a divide between the big toe and little toes.  About half way in the foot, grab on side (toe side v little toe side) and grab other side with other hand, feeling the bones underneath.  Move the bones, slightly, it isn't a very big stretch, like a scissor, up and down.  repeat on both feet for 10 times.  

8. Sensory stimulation

A big part of Felipe's rehab is sensory: He needs to have stimulation to remember his feet, his legs, his muscles and begin to rely on those muscles.  One way to do this is to rub lotion on his legs, so he can feel something on his legs.  Right now he feels, but not as sensitive as he would be on his arms.  Then following the lotion, I take a bristled brush and rub it on his legs and feet.  If there is a reaction then I bring in his legs and try to make them react.  Right now, he sees me doing something there and tries to move but if he doesn't see it, he doesn't react.  After the brush, I take a little toy with prickly spikes and brush it w his legs.  And finally I take a little stuffed animal, very soft, and brush it on his legs and feet.

9. Hip Stretch

Open his legs wide, keeping legs straight.  Close his legs.  He squirms the most on this one, mostly bc he is so tight in his hip area.  Good thing he complaints, it means he has feeling &  sensation. 10 repeat on both legs.  Then take one leg, keep level with the floor or bed, then take other leg and pull straight up.  Feel muscle stretch, hold for 15 seconds, repeat 10 x.  today's we did it once...he skipped ahead and tried to kick free....

Now that stretching is done, on to the exercises:

1. The wheel barrel:

I place an enticing toy at one end of the sofa, in the hopes that Felipe will crawl to it.  once he starts to crawl, I pick up his feet (kind of like a wheelbarrow) and let him carry the majority of the weight on his arms.  The idea is that he has to get stronger in his arms to pull himself to stand.  Repeat 10x.  Today, he did it for 8 times and then just collapsed into the sofa and not wanting to get up again.  This exercise also challenges his endurance.

2. Pulling up

I place desirable toy between my neck and chest, while having Felipe put his hands in mine, and pulling up using his arms only.  kind alike a baby version of a pull up. repeat 10x.  This one didn't go very well, but we did complete 10.

3. Kicking on his side

Placing Felipe on his side, have him kick at an object and them repeat having him lay on the other side.   Felipe has re-learned to roll over, so when I put him on his side, he rolls and crawls in an attempt to escape.  Repeat 10x on both sides.  I haven't been able to get one of these in as of yet.

4.  Kick while sitting on Mami.

Placing Felipe on my lap, on the floor, have Felipe kick an object.  This uses a different set of muscles than when he is on his side.  Thanks for Tio Danny and Titi Nancy, we have a perfect toy for this exercise, a small toy that rolls on its own, lights up and makes noise. Each leg has to kick 10 times.  If he doesn't kick, move his leg towards the object and perform kicking motion.  Wait to see if he will then repeat the motion on his own.  This we have been successful with, he likes to kick the little rolling ball!

For the following two exercises I have to take an ace bandage and wrap up one knee twice and then loop over to the other knee twice and then in a figure eight motion, wrap up both knees.  This is done to lock his knees while he stands so that he can strengthen his knee and hips.  ALL STANDING EXERCISES MUST BE DONE WITH BRACES. While the current braces aren't ideal, and need to be replaced, they still work in protecting his ligaments and bones.  

5.  [ACE BANDAGE] Standing against sofa, face facing the sofa.  

While I kneels behind Felipe, having Felipe stand and play with toys on the sofa.  Try to keep his knees from bucking and from him from sitting down.  Try to lengthen the time he is putting weight on his feet and time in which he is standing.  Keep and eye on his posture, he should stand straight throughout, should not bend at the waist or lean too forward.

6. [ACE BANDAGE] Standing against sofa, facing away the sofa (back to sofa).

While I squat, and sit on my heels, keep Felipe in between my thighs.  I keep a toy above my head and maintain his good posture.  This exercise is a test of my own flexibility, as I have to stretch before hand...it feels like a yoga move!!  Felipe has been able to hold this pose, but since I'm not so balanced, I haven't been able to keep him entertained with a toy. I have to work on my own balance. Or have someone else help me by holding the enticing toy.

7.  [NO ACE BANDAGE]  Pull to stand

I sit down on the floor and place Felipe straddling my thigh.  Making sure that both feet are planted on the floor.  Put enticing toy on sofa top, once Felipe is interested in the toy, he will begin to push off to pull himself up to the toy.  Place my hands on his hips with my thumbs covering his butt.  Gently help him stand up.  Slowly remove my hands or lessen the amount of weight I help him carry.  Over time he starts to stand on his own.  while standing he will sway to the left and right.  Help him balance out his weight and also shift his weight.  he needs to be able to shift his weight from one side to another to stand and to walk.

8. [NO ACE BANDAGE] Kneel  to stand

Put Felipe on floor, near sofa, in the crawling position.  tap the sofa and show him toy.  if interested he will put his hands on sofa and start to kneel.  ideally, he will then kneel walk, moving his knees to get closer to the sofa.  Once he is close enough, I grab him by pelvis area and shift the weight to his right leg, then tickle his left quad.  If a reaction (moving his knee up) allow him to complete.  If no movement, move his knee up.  then shift weight to left leg (which is planted), while tickling his right leg to bend upwards (putting foot planted on floor) If he doesn't respond, do movement for him.  All the while he should be pulling himself up, help him complete the pull up.  result, he will stand.  this is a hard one bc I have to do it quickly enough and during the period of time where he is pulling himself up!  repeat, 10 times, goal is to get him to respond on his own and pull up his knees to plant his foot on his own.

9. [NO ACE BANDAGE] Baby squats

I sit down on the floor, I place Felipe straddling my thigh. He is sitting upright..  I place interesting toy on sofa, he tries to stand, then I move the toy to the floor, where he squats down and sits again.  repeat 10-15x.  its a work out!!

And that's it!!, I try to get it all done at once, but realistically, the bandaging of the legs and putting on the splints frustrates Felipe and I have to distract him in between those stretches and exercises. And that's all for day 2 for early intervention...more awaits!