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.
Monday, 31 March 2014
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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