Tuesday, October 11, 2011
Kiss Goodnight
We have a book called Kiss Goodnight. It's about a mama bear putting her bear cub to bed and she forgets to give him a kiss goodnight. Tonight I put the twins down. I closed the door. Dani yelled, "Mommy!" I went back in and she reached out, puckered and gave me a kiss goodnight. Then she lied down to go to sleep. My heart melted 10x over!
You have to be your child's advocate.
No one will ever care about your kids like you will. When Dani and Sebastian were born, they were automatically put enrolled in the Westside Regional Center program. This program evaluates kids with special circumstances and follows their progress. They are government funded and help pay for special services. Since our state is broke, they have cut many services which is a pity for my children. My sisters kids who spent 10 days in the NICU all had physical and speech therapy completely paid for. My kids were born at a time when the economy is a mess, and now I have to fight for everything for my kids, especially Sebastian.
Sebastian has low muscle tone, which means he has difficulty with many gross and fine motor skills. His cognitive skills were delayed due to his motor skills being delayed. Thankfully now that he's catching up physically all the cognitive skills are taking off. He needed Physical, Occupational and Infant Stimulation Therapy, no question about it. It was also recommended to us by Dr. Kotton a specialist at Cedar's Sinai as well as Dr Kline that Sebastian go to an early intervention center with a clinical setting. They have a great program at UCLA which consists of a staff of Occupational and Physical therapists. Every child is unique and has their own special circumstances when it comes to development. And then they also have peer models that attend the program so that the kids that are behind are able to learn from their peers. The ideal situation would be to have both of my kids in this program. My biggest concern for Sebastian is getting hurt. Whenever there are stronger/bigger kids around him, it is a dangerous situation. Kids are agressive. They like to climb and aren't aware of space. He gets knocked around a lot and with his low muscle tone, he falls often. This program would allow him to be with many other kids, but have tons of adult supervision and support to provide a safe environment which would allow him to transition into a normal preschool. And Daniela would benefit by just being there, learning and interacting with other kids. She already does benefit from Sebastian's Infant Stimulation Therapist. I also want them to be with each other as well as be around other people with various differences so they always learn to respect all kinds of people no matter what their disability or circumstance is.
Despite dr recommendations, We got denied funding for this program. Erin Fox, the lawyer that represents WSRC said, "We just can't find justification for Sebastian to go to this program." I was livid! "You can't find justification? You have a whole report from the early childhood development evaluation therapist from Cedar's Sinai. Have you read it? Can I get a lawyer to help me argue this?" I responded. "I have a ton of justification."
1. A top specialist and our pediatrician recommended it
She explained that doctors recommend that all children go to these programs so they need more justification.
2. My son has a diagnosed rare growth condition called RSS, which means that while his peers are typically 25lbs, he is only 18lbs.
She said, "I don't deny that your son has serious medical issues."
3. My son has hypertonia which means he has weak muscle tone and can't go to regular children's gyms without being put in a dangerous situation
She listened.
4. Cognitive development is directly linked to physical development and he got a late start in comparison to his peers.
She listened.
5. He needs physical therapy and occupational therapy. A clinic based program is recommend and there are NONE near my house.
She listened and said, "This could be the stance that you take that gets this turned. It is recommended that he goes to a clinic and if there isn't a clinic near your home..."
I went on and on. I told her that I felt that they had budgets that they had to meet and that my son was getting pushed out of the system. She told me that because his verbal skills were ok, he wasn't eligible. I was stunned. I asked her if she had ever been to the UCLA Early Intervention program. I explained that when I toured it, they explained to me that they focus on all development, fine & gross motor as well as cognitive. What about the rest of him. What about giving him a good foundation so when he does go to school, he has the same head start as everyone else? I fought hard for Erin to get WSRC to change their stance. She called me back that day and told me she thinks she can get him in.
Moral of the story. Fight for the ones you love. You have to advocate for your family. No one will ever care like you will. Now, we need to work on getting Dani in. I'll have to pay for her, but it's worth it. It's now just a matter of space.
Sebastian has low muscle tone, which means he has difficulty with many gross and fine motor skills. His cognitive skills were delayed due to his motor skills being delayed. Thankfully now that he's catching up physically all the cognitive skills are taking off. He needed Physical, Occupational and Infant Stimulation Therapy, no question about it. It was also recommended to us by Dr. Kotton a specialist at Cedar's Sinai as well as Dr Kline that Sebastian go to an early intervention center with a clinical setting. They have a great program at UCLA which consists of a staff of Occupational and Physical therapists. Every child is unique and has their own special circumstances when it comes to development. And then they also have peer models that attend the program so that the kids that are behind are able to learn from their peers. The ideal situation would be to have both of my kids in this program. My biggest concern for Sebastian is getting hurt. Whenever there are stronger/bigger kids around him, it is a dangerous situation. Kids are agressive. They like to climb and aren't aware of space. He gets knocked around a lot and with his low muscle tone, he falls often. This program would allow him to be with many other kids, but have tons of adult supervision and support to provide a safe environment which would allow him to transition into a normal preschool. And Daniela would benefit by just being there, learning and interacting with other kids. She already does benefit from Sebastian's Infant Stimulation Therapist. I also want them to be with each other as well as be around other people with various differences so they always learn to respect all kinds of people no matter what their disability or circumstance is.
Despite dr recommendations, We got denied funding for this program. Erin Fox, the lawyer that represents WSRC said, "We just can't find justification for Sebastian to go to this program." I was livid! "You can't find justification? You have a whole report from the early childhood development evaluation therapist from Cedar's Sinai. Have you read it? Can I get a lawyer to help me argue this?" I responded. "I have a ton of justification."
1. A top specialist and our pediatrician recommended it
She explained that doctors recommend that all children go to these programs so they need more justification.
2. My son has a diagnosed rare growth condition called RSS, which means that while his peers are typically 25lbs, he is only 18lbs.
She said, "I don't deny that your son has serious medical issues."
3. My son has hypertonia which means he has weak muscle tone and can't go to regular children's gyms without being put in a dangerous situation
She listened.
4. Cognitive development is directly linked to physical development and he got a late start in comparison to his peers.
She listened.
5. He needs physical therapy and occupational therapy. A clinic based program is recommend and there are NONE near my house.
She listened and said, "This could be the stance that you take that gets this turned. It is recommended that he goes to a clinic and if there isn't a clinic near your home..."
I went on and on. I told her that I felt that they had budgets that they had to meet and that my son was getting pushed out of the system. She told me that because his verbal skills were ok, he wasn't eligible. I was stunned. I asked her if she had ever been to the UCLA Early Intervention program. I explained that when I toured it, they explained to me that they focus on all development, fine & gross motor as well as cognitive. What about the rest of him. What about giving him a good foundation so when he does go to school, he has the same head start as everyone else? I fought hard for Erin to get WSRC to change their stance. She called me back that day and told me she thinks she can get him in.
Moral of the story. Fight for the ones you love. You have to advocate for your family. No one will ever care like you will. Now, we need to work on getting Dani in. I'll have to pay for her, but it's worth it. It's now just a matter of space.
Miriam Milton
I met a woman at the park named Miriam Milton. Could it be sign from heaven? My grandmother's name was Miriam and my grandfather was Milton, both died in the last year and 1/2. I believe we were destined to be friends. Miriam Milton is the proud mom of 15 month old boy/girl twins named David and Hannah. They are adorable. She asked me, "Are you the twins' mom???" I answered, "Yes, you know them?" She told me that she comes to the park every morning at the same time as my kids. She has watched them grow since they were 6 months old. She went on to say, "I adore them both. They are such great kids. I have a special place in my heart for your son. I saw his sister climbing to the top of the jungle gym and remember that your nanny was concerned that he wouldn't walk. And look at him now! He's amazing!"
Later in the week, we made plans to get together for a play date over the weekend, but unfortunately her daughter was sick so we had to cancel. But we saw each other at the park anyway. I mentioned to her that our schedule might change because I got Sebastian into a special program. She looked at me very concerned. "He's ok, right? He's healthy?" I said, "Indeed he is, but he's extra small and always will be." She looked at me with a tear in her eye. "You have no idea how much I love your son. He is such a miracle."
I have heard from others at the park similar comments. They have watched Sebastian overcome his challenges with such determination. He is a bit of a famous kid at the park. And they also comment about Daniela that she is ridiculous with her physical abilities. I'm so proud of both of them for their individual abilities. Nothing will stop Dani. And Sebastian will work his tush off until he can do all the same things. My kids are awesome.
Later in the week, we made plans to get together for a play date over the weekend, but unfortunately her daughter was sick so we had to cancel. But we saw each other at the park anyway. I mentioned to her that our schedule might change because I got Sebastian into a special program. She looked at me very concerned. "He's ok, right? He's healthy?" I said, "Indeed he is, but he's extra small and always will be." She looked at me with a tear in her eye. "You have no idea how much I love your son. He is such a miracle."
I have heard from others at the park similar comments. They have watched Sebastian overcome his challenges with such determination. He is a bit of a famous kid at the park. And they also comment about Daniela that she is ridiculous with her physical abilities. I'm so proud of both of them for their individual abilities. Nothing will stop Dani. And Sebastian will work his tush off until he can do all the same things. My kids are awesome.
Tuesday, September 20, 2011
First words, first steps and taking care of business
We have entered the toddler stage. It by far is my favorite stage yet, and I hear with each stage, it gets better and better. My kids are communicating with me and they have such different personalities.
Daniela is a very confident, sweet, devilish, snuggly, cuddly, fashionista. She loves to accessorize! She has a pair of fake uggs, a purse, a necklace aunt Jules brought from Africa and uses my rubberbands as bracelets. She never misses an opportunity to wear her sunglasses. She is too much!
Sebastian is a kind, gentle, caring intellect with a bit of his sister's devilish qualities. He could sit quietly and read books for hours. He loves organized play. He has a crush on his play therapist that comes 3x a week. He bats his eyes and smiles every time she walks through the door. She works on Fine & Gross Motor Skills. Sebastian is a love. No other way to put it.
Daniela is starting to be protective of her brother. For example, Aunt Jules picked up Sebastian when he didn't want her to. She started screaming for her to put him down and Daniela went up to her, pointed her finger and said, "No! No!" as if she were protecting Sebastian. Sebastian doesn't need her to protect him. He can handle his own. He may be small, but he has a loud voice and isn't afraid to use it. Sebastian is starting to do all the things his sister has been doing. He's finally able to walk, climb, talk and everyday he gets stronger and stronger. He does fall often as he has extra small, very flat unusual feet which make it harder to balance. I'm taking him to an orthopedic surgeon next week to get assessed. I think he's going to need orthotics for both feet and possibly a leg brace. Whatever helps, I'm all for!
I'm in take care of business mode. I took Sebastian to an endocrinologist to start the process for Growth Hormones. I have an apt with an Orthopedic Surgeon to assess the way he walks and advise us on Orthotics. We've taken him for blood work, a bone xray and next we need to have a sleep study done as people of Short Stature have a greater risk for Sleep Apnea.
This kid keeps me busy but he's worth every minute I spend on this. And his sister has been by his side every step of the way.
No one said parenthood would be easy, but it's the best job I've ever had!
Daniela is a very confident, sweet, devilish, snuggly, cuddly, fashionista. She loves to accessorize! She has a pair of fake uggs, a purse, a necklace aunt Jules brought from Africa and uses my rubberbands as bracelets. She never misses an opportunity to wear her sunglasses. She is too much!
Sebastian is a kind, gentle, caring intellect with a bit of his sister's devilish qualities. He could sit quietly and read books for hours. He loves organized play. He has a crush on his play therapist that comes 3x a week. He bats his eyes and smiles every time she walks through the door. She works on Fine & Gross Motor Skills. Sebastian is a love. No other way to put it.
Daniela is starting to be protective of her brother. For example, Aunt Jules picked up Sebastian when he didn't want her to. She started screaming for her to put him down and Daniela went up to her, pointed her finger and said, "No! No!" as if she were protecting Sebastian. Sebastian doesn't need her to protect him. He can handle his own. He may be small, but he has a loud voice and isn't afraid to use it. Sebastian is starting to do all the things his sister has been doing. He's finally able to walk, climb, talk and everyday he gets stronger and stronger. He does fall often as he has extra small, very flat unusual feet which make it harder to balance. I'm taking him to an orthopedic surgeon next week to get assessed. I think he's going to need orthotics for both feet and possibly a leg brace. Whatever helps, I'm all for!
I'm in take care of business mode. I took Sebastian to an endocrinologist to start the process for Growth Hormones. I have an apt with an Orthopedic Surgeon to assess the way he walks and advise us on Orthotics. We've taken him for blood work, a bone xray and next we need to have a sleep study done as people of Short Stature have a greater risk for Sleep Apnea.
This kid keeps me busy but he's worth every minute I spend on this. And his sister has been by his side every step of the way.
No one said parenthood would be easy, but it's the best job I've ever had!
Wednesday, June 22, 2011
17 month old assessment at Cedar's
We just got back from our post NICU (neonatal intensive care unit) developmental assessment. Lots of information to take in. Technically Sebastian is turning 17 months on June 30th, but he is showing skills around a one year old as far as cognitive development, and his fine and gross motors skills are at 9/10 months. I knew he was behind, but this information is more than I realized. Our Physical Therapist always tells me he's not so far behind, but as I thought, she is comparing him to her clientele, and all those kids are behind. So, I'm processing the information. I have been so positive and accepting of this situation, however right now I'm a bit down. I'm only going to give myself today to feel this way and I think it just makes me human to have a bad day. The therapist asked me how I felt when I got the diagnosis of RSS and I said, "I'm doing just fine. I'm grateful it isn't something else, thank god he's for the most part healthy!" But I guess that prompted something in me. The outside world sees this as news that could devastate a parent. That to me is sad. No matter how perfect I think he is, I know the outside world will impose their own thoughts and views. And it makes me realize that Sebastian will have challenges that others won't. And for the first time since I received the information, I'm kind of pissed that he has this. He's such an innately good person and he doesn't deserve to have to work harder and deal with more challenges than anyone else. Then I think about Carole, my good friend who lost her child, and I realize how lucky I am to have a child that has to face these challenges. I just hate that her tragedy gives me perspective. Life isn't fucking fair!
Dr Kotton, my new all time favorite doctor EVER told us to take him to a 4 day a week therapy center where he can work on his fine and gross motor skills. I get no help from the government so have to figure out how much this will cost us. I have the ability to pay for it, but just sucks that I pay taxes and this country has cut all the programs that help kids like Sebastian. He's not walking yet. His feet are really small and his ankles are very weak which is making it harder. He'll get there. I know once he walks, he's going to be a champ as he started crawling like a wounded soldier and now he can crawl at record speeds with perfect form and agility!
JP never shows emotion during these things. He got mad at me about a stupid comment I made (rightly so). I think that is his way of venting. I know he worries in his own hidden way. I know he is OBSESSED with our kids as am I.
So, today is my day to process, be a little sad, and formulate a plan on how to live life as normally as we can while still addressing all of the issues we face. And then I'm going to step back and think about how unbelievably happy we are as a family and how lucky we are for each moment together no matter what is thrown at us. We are a group of 4 people that in my mind are the best combination of people ever put together. I'm beyond in love with my family and pray that this is only the beginning of a long life of this much happiness ahead.
Dr Kotton, my new all time favorite doctor EVER told us to take him to a 4 day a week therapy center where he can work on his fine and gross motor skills. I get no help from the government so have to figure out how much this will cost us. I have the ability to pay for it, but just sucks that I pay taxes and this country has cut all the programs that help kids like Sebastian. He's not walking yet. His feet are really small and his ankles are very weak which is making it harder. He'll get there. I know once he walks, he's going to be a champ as he started crawling like a wounded soldier and now he can crawl at record speeds with perfect form and agility!
JP never shows emotion during these things. He got mad at me about a stupid comment I made (rightly so). I think that is his way of venting. I know he worries in his own hidden way. I know he is OBSESSED with our kids as am I.
So, today is my day to process, be a little sad, and formulate a plan on how to live life as normally as we can while still addressing all of the issues we face. And then I'm going to step back and think about how unbelievably happy we are as a family and how lucky we are for each moment together no matter what is thrown at us. We are a group of 4 people that in my mind are the best combination of people ever put together. I'm beyond in love with my family and pray that this is only the beginning of a long life of this much happiness ahead.
Thursday, May 19, 2011
Russell Silver Syndrome
The twins are now 15 months old. They are both incredible, and I'm head over heals in love with my kids. For a while, we have been concerned about Sebastian. He was having a lot of issues with eating and growth. He was throwing up 2x a day and not gaining any weight. Drs called it failure to thrive. I was a nervous wreck. I was so worried about him getting nutrients, and every time he'd eat, he'd throw up. It was awful. We eliminated milk and he's like a new baby. He's still tiny and not growing, but he's happier and learning more and more. We have been to a GI specialist and a Genetics Specialist. We have received the diagnosis that Sebastian has a form of Primordial Dwarfism called Russell Silver Syndrome. It feels strange to write those words... "Primordial Dwarfism". I've been so far removed from "little people" and never would have guessed that my son would be a little person. Honestly, I'm just happy that we got his feeding under control. Yes, my child is tiny when he's around other kids. But for some reason, I'm not worried about him. I guess I know worrying won't help. And I love him so much as he is, I wouldn't want to change him. I just want him to always feel proud of who he is. I want to make sure the world always treats him right. I'm so grateful that he is a twin. I know Dani will always be by his side, always be his friend and never let others judge him based on his size.
Although there are 4 of us, I keep thinking of the Three Musketeers... "All for One and One for All." That is who we are. If Sebastian has obstacles in life, we'll all be supporting him. We share in each others obstacles and we share in each others triumphs!
Sebastian and Daniela... you have inspired me since the day you arrived in this world at 2 and 3 lbs. Keep inspiring me with your amazing characters and personalities. I love you always and forever.
Although there are 4 of us, I keep thinking of the Three Musketeers... "All for One and One for All." That is who we are. If Sebastian has obstacles in life, we'll all be supporting him. We share in each others obstacles and we share in each others triumphs!
Sebastian and Daniela... you have inspired me since the day you arrived in this world at 2 and 3 lbs. Keep inspiring me with your amazing characters and personalities. I love you always and forever.
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