...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!
Wednesday, 29 January 2014
Monday, 27 January 2014
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.
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.
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.
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.
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| Wound from crawling 1.26.2014 |
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| Felipe in Stander for first time |
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| Felipe confused that table tray is clear |
Thursday, 23 January 2014
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.
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.
Monday, 20 January 2014
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.
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.
Sunday, 19 January 2014
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
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
Wednesday, 15 January 2014
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!
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!
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