FROM ONE SUPER FAMILY TO ANOTHER!
Monday, October 31, 2011
Sunday, October 30, 2011
Trick or Treat
Jayden walking in her preschool Halloween parade. She went as Optimus Prime, but her mask broke.
Sophia before trick or treating festivities. She looks thrilled right?
Now there's a little Halloween spirit :)
Jayden's 3rd costume THIS year, Iron Man :)
Our little Dinosaur :)
Excuse me....but where is the candy????
Trick or Treating with friends :)
Hold on guys, I'm coming!!! Save me some candy!
Saturday, October 29, 2011
ABC's and 123's
I can not say it enough, but it is so important to remember that children with special needs are more like other children without special needs, than they are different! While children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them. Most children with Down syndrome have mild to moderate impairments. Some high school graduates with Down syndrome participate in post-secondary education and many adults with Down syndrome are capable of working in the community.
It is very important to stimulate, encourage, and educate children with Down syndrome from infancy. Programs for young children with special needs are offered in many communities. Early intervention programs, including physical therapy, occupational therapy and speech therapy can be very helpful.
Like all children, children with Down syndrome greatly benefit from being able to learn and explore in a safe and supportive environment. Being included in family, community and preschool life will help a child with Down syndrome develop to his or her full potential. While social development and social learning are often quite good, development in other areas such as motor skills, speech and language are usually delayed. Many children with Down syndrome eventually reach most developmental milestones.
When it comes to Sophia, I have done very little differently in helping to teach her to be the best Sophia that she can be, then what I did with Jayden. Of course things take longer and we have to use a lot of repetition with her, but on those days when we are least expecting it, POW, she does exactly what we have been practicing for days, weeks or maybe even months, and that is when I know, all that hard work was worth it!!! I treat Sophia no differently than I treat Jayden. I expect the same things from Sophia that I expected from Jayden when she was at that same stage in her life. I know that Sophia is very capable of a lot of things, but I also know that her strong will and stubborness can interfere sometimes, and we just have to push all of that aside and make her understand that she does want to to do all of these wonderful things, because even though they seem hard, the outcome will be amazing! I will never "settle" when it comes to either one of my girls and their education. I know that both of my girls are very smart and they both have their own strengths and weaknesses. And together we will work on their weaknesses and continue to build on their strengths.
It is very important to stimulate, encourage, and educate children with Down syndrome from infancy. Programs for young children with special needs are offered in many communities. Early intervention programs, including physical therapy, occupational therapy and speech therapy can be very helpful.
Like all children, children with Down syndrome greatly benefit from being able to learn and explore in a safe and supportive environment. Being included in family, community and preschool life will help a child with Down syndrome develop to his or her full potential. While social development and social learning are often quite good, development in other areas such as motor skills, speech and language are usually delayed. Many children with Down syndrome eventually reach most developmental milestones.
When it comes to Sophia, I have done very little differently in helping to teach her to be the best Sophia that she can be, then what I did with Jayden. Of course things take longer and we have to use a lot of repetition with her, but on those days when we are least expecting it, POW, she does exactly what we have been practicing for days, weeks or maybe even months, and that is when I know, all that hard work was worth it!!! I treat Sophia no differently than I treat Jayden. I expect the same things from Sophia that I expected from Jayden when she was at that same stage in her life. I know that Sophia is very capable of a lot of things, but I also know that her strong will and stubborness can interfere sometimes, and we just have to push all of that aside and make her understand that she does want to to do all of these wonderful things, because even though they seem hard, the outcome will be amazing! I will never "settle" when it comes to either one of my girls and their education. I know that both of my girls are very smart and they both have their own strengths and weaknesses. And together we will work on their weaknesses and continue to build on their strengths.
Friday, October 28, 2011
My Cup Runneth Over
When I look at my girls, my heart melts. They are everything to me. I love them both more than anything else in this world. I have big dreams for my girls, not only as growing human beings, but as SISTERS. I dream that they will be close to each other and sit up late at night and share secrets in the dark. I dream that they will love each other more than they love anyone else, except their mama of course :) I dream that they will support each other in everything that the other one does and be each other's number one cheerleader. I dream that Jayden will fully understand one day that Sophia may need her more than other siblings need their brother or sister and that she will whole heartedly step up to the plate and be there for Sophia, in whatever way she needs her big sister.
My girls are still young, 2 and 5. The future, for either one of them, is very unclear right now. I look at their relationship now and somedays I think, "these girls are going to be great together! They are going to love one another and protect one another and stand up for each other, like nobody's business." But then, on a more frequent day I think, "oh my gosh, Jayden is going to bully Sophia more than the average Joe off the street. She isn't going to want her to be around her, she is going to get annoyed with her presence and just leave her in the dust to fend for herself!" Those days scare me. But again, my girls are only 2 and 5. Of course they get on each other's nerves. They pester one another like siblings are supposed to. They don't have to be there for one another right now, because that's what they have parents for, right?
Every once in a while, when Jayden doesn't know that I'm watching, I will catch her loving on Sophia. I will find her playing with her and sharing her most favorite toys with her little sister. I will listen to her explaining things to Sophia and teaching her how something works. I will see her pick up a toy for Sophia that she dropped or see her keeping a watchful eye on her little sis when we are around a group of kids, especially ones we don't know. I've heard her stand up to other children before when they have taken a toy away from Sophia, or when they get mad at Sophia for taking a toy away from them, Jayden always steps in as the voice of reason. Usually repeating something similiar to what I have to tell her over and over again when she too gets frustrated at her little sister for swiping her toys away from her. These are the moments when, my cup runneth over.
The point is, I worry about my girls and their future relationship. But most of us don't step up to the plate, unless we have to, especially at such a young age. And Jayden is being a kid right now, exactly like she should be. And Sophia is being a little sister right now, exactly like she should be. And Randy and I are being the parents right now, exactly like we should be. I think Jayden knows that as their parents we will take care of her and Sophia and protect them and love them and support them and right now that role isn't a top priority for her. Of course my girls love each other and I see it, daily. But I'm always looking at the bigger picture and sometimes I miss what is happening right in front of me.
Thursday, October 27, 2011
Special Needs Trust
Since Jayden was born I knew that Randy and I needed to get things in order, like have a will and life insurance policies and a plan in place should the unexpected happen, but time just kept passing by, and nothing ever got put in place. Then Sophia came and all of our concerns from before started becoming bigger concerns now. So again we discussed getting things in order, for both of our girls, and I am happy to say that TODAY we are completing the process of having a plan in place! Of course the idea of not being here for my girls forever, is heartbreaking. But the idea of not being here for my girls, and leaving a huge financial burden on someone else, is even more unsettling. So back in the spring we attended a free seminar at Indiana State University and got a lot of really good information about planning for our future and the girls' future, unique to each one. Then we followed up, one on one, with a financial planner and from there the plan was set into action. He matched us up with an attorney and together, the four of us, are putting our plans on paper and finalizing them!
One thing that I learned about after Sophia was born, was something called a Special Needs Trust. The basic purpose of a special needs trust, also known as a supplemental needs trust, is to provide benefits, by means of a trust, to a beneficiary who would otherwise lose eligibility for public assistance; SSI or Medicaid. Resources including funds in checking accounts, savings accounts, CD's, savings bonds and more, cannot total more than $1500 or the person will not be eligible for Medicaid and more than $2000 and the person cannot be eligible for SSI. Special Needs Trusts do not count as a resource. So in Sophia's case, when she turns 18, she will be eligible for Medicaid and SSI, as long as she doesn't have more than $1500 to her name. But with her trust in place, should anything ever happen to Randy and I, she will have a nest egg for her future that can be distributed out to her to help her live and pay expenses that aren't covered through government programs.
There are two types of Special Needs Trusts. The first Trust is an account funded by the parents or grandparents (the Donors) of a person receiving government benefits. Most Donors, people/person funding the trust, choose to fund the Trust account for their child or grandchild upon their death- either through their will, living trust, retirement account or life insurance proceeds. With this type of trust, typically, the account is annuitized over the course of the Beneficiary's lifetime, creating an annual spending projection. Setting an annual spending limit ensures that there will always be money in the Beneficiary's account throughout the course of his or her lifetime.
The second Trust is a Special Needs Trust which is set up by the person for whom the Trust is for, like Sophia setting up a Trust using her own money, and still being able to retain Medicaid and SSI benefits. People receiving an inheritance, a lump sum back-payment from social security or a personal injury settlement, have put their money into a Special Needs Trust rather than spend the money quickly just to stay eligible for government benefits. The intent for the this second Trust was not to be an investment vehicle so much as a temporary safe harbor for persons who have enough money to jeopardize public assistance benefits, but not nearly enough to make long-term plans. So for instance, if Sophia would get a lump sum of say $20,000 from somewhere, that could kick her off of both Medicaid and SSI, but with her doctor bills and living expenses, she would run through that money pretty fast. Now she would be subjected to reapplying for both Medicaid and SSI and have to wait to get back on, all because she had too much money in her name for a period of time. But with this trust, she can tuck that money away and use it over time without losing her Medicaid and SSI. With this Trust, any money left over after the Beneficiary passes away, goes back to the state. But with the first Trust, the one set up by Randy and I, that we plan on funding in our passing, that doesn't happen. Should Sophia pass and their still be money left in her Trust, it could be passed on to Jayden or any surviving children or grandchildren there may be.
Bottom line to all of this is, I've realized just how important it is to make sure that my girls will be taken care of both emotionally and financially. Randy and I have a wonderful support system, that would take our girls in and do whatever needed to be done to ensure that they were happy and healthy. BUT, as their parents, it's our responsibility to plan for their future. We don't want anyone to have to go broke over the fact that they are forced to take in one or two more children that they hadn't planned for. And even more importantly I've realized, with Sophia's needs being some what unique, it's very important that I always have an up to date "Letter of Intent," which not only lists Sophia's medical needs, doctors, likes/dislikes, but it also represents our wishes and desires for Sophia as her parents. So that should someone ever have to take over my job as her Mommy, they would know how to take care of her needs that may not be so "typical," and have an understanding of what Randy and I dream for her, for her future.
This has all been a learning process, which we still aren't 100% knowledgeable about, but pleased to say that we have a plan!
One thing that I learned about after Sophia was born, was something called a Special Needs Trust. The basic purpose of a special needs trust, also known as a supplemental needs trust, is to provide benefits, by means of a trust, to a beneficiary who would otherwise lose eligibility for public assistance; SSI or Medicaid. Resources including funds in checking accounts, savings accounts, CD's, savings bonds and more, cannot total more than $1500 or the person will not be eligible for Medicaid and more than $2000 and the person cannot be eligible for SSI. Special Needs Trusts do not count as a resource. So in Sophia's case, when she turns 18, she will be eligible for Medicaid and SSI, as long as she doesn't have more than $1500 to her name. But with her trust in place, should anything ever happen to Randy and I, she will have a nest egg for her future that can be distributed out to her to help her live and pay expenses that aren't covered through government programs.
There are two types of Special Needs Trusts. The first Trust is an account funded by the parents or grandparents (the Donors) of a person receiving government benefits. Most Donors, people/person funding the trust, choose to fund the Trust account for their child or grandchild upon their death- either through their will, living trust, retirement account or life insurance proceeds. With this type of trust, typically, the account is annuitized over the course of the Beneficiary's lifetime, creating an annual spending projection. Setting an annual spending limit ensures that there will always be money in the Beneficiary's account throughout the course of his or her lifetime.
The second Trust is a Special Needs Trust which is set up by the person for whom the Trust is for, like Sophia setting up a Trust using her own money, and still being able to retain Medicaid and SSI benefits. People receiving an inheritance, a lump sum back-payment from social security or a personal injury settlement, have put their money into a Special Needs Trust rather than spend the money quickly just to stay eligible for government benefits. The intent for the this second Trust was not to be an investment vehicle so much as a temporary safe harbor for persons who have enough money to jeopardize public assistance benefits, but not nearly enough to make long-term plans. So for instance, if Sophia would get a lump sum of say $20,000 from somewhere, that could kick her off of both Medicaid and SSI, but with her doctor bills and living expenses, she would run through that money pretty fast. Now she would be subjected to reapplying for both Medicaid and SSI and have to wait to get back on, all because she had too much money in her name for a period of time. But with this trust, she can tuck that money away and use it over time without losing her Medicaid and SSI. With this Trust, any money left over after the Beneficiary passes away, goes back to the state. But with the first Trust, the one set up by Randy and I, that we plan on funding in our passing, that doesn't happen. Should Sophia pass and their still be money left in her Trust, it could be passed on to Jayden or any surviving children or grandchildren there may be.
Bottom line to all of this is, I've realized just how important it is to make sure that my girls will be taken care of both emotionally and financially. Randy and I have a wonderful support system, that would take our girls in and do whatever needed to be done to ensure that they were happy and healthy. BUT, as their parents, it's our responsibility to plan for their future. We don't want anyone to have to go broke over the fact that they are forced to take in one or two more children that they hadn't planned for. And even more importantly I've realized, with Sophia's needs being some what unique, it's very important that I always have an up to date "Letter of Intent," which not only lists Sophia's medical needs, doctors, likes/dislikes, but it also represents our wishes and desires for Sophia as her parents. So that should someone ever have to take over my job as her Mommy, they would know how to take care of her needs that may not be so "typical," and have an understanding of what Randy and I dream for her, for her future.
This has all been a learning process, which we still aren't 100% knowledgeable about, but pleased to say that we have a plan!
Wednesday, October 26, 2011
Tuesday, October 25, 2011
Anybody wanna eat?.....Anybody???
As most of you know Sophia has a feeding tube and always has. After Sophia was born, the doctors realized that she had a blockage where her stomach and her intestines meet, called a duodenal atresia. She had to have surgery to repair the blockage so that she could eat, and so that her food would have a place to go after it got into her tummy. Sophia wasn't able to eat at all for the first few days after she was born, there was no where for her food to go. It wasn't until she was about 4 days old that she was ever given anything, and because Sophia had such a poor suck/swallow she was given a NG tube (a tube that is inserted down the nose into the stomach) to get nutrition. And so our feeding tube journey began........
After about 4 months of dealing with the NG tube, and having to replace it down her nose every week and having all the pesky tape glued to her cute little face, we decided it was time for a g-tube. Plus, we knew that oral feedings were a LONG time away for us, and we were ready to get something more convenient. A gastrostomy tube, or G-tube, is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's a way to make sure that kids with trouble eating get the fluid and calories they need to grow. A gastrostomy is a common procedure that takes only about 30-45 minutes. After spending 1-2 days in the hospital, kids who have had a gastrostomy can get back to their normal activities fairly quickly after the incision has healed.
Not all children with Down syndrome have feeding tubes. There are a lot of children who eat very well and never have any feeding problems or at least never require a tube to help them get nutrition. But there are children, who DO NOT have Down syndrome who do need a feeding tube. Common conditions that might require a child to need a G-tube include: congenital (present from birth) abnormalities of the mouth, esophagus, stomach, or intestines; sucking and swallowing disorders, which are often related to prematurity, brain injury, developmental delay, or certain neuromuscular condtitions; failure to thrive, which is a general diagnosis that refers to a child's inability to gain weight and grow appropriately; or extreme difficulty taking medications. Gastric tubes typically last for several months or longer before needing to be replaced and replacing a G-tube is easily done by a parent or health care provider without any surgical procedures. If and when the doctor decides that a child is able to take in enough nutrition by mouth, the G-tube or button, may be removed. Removal takes only minutes and is usually done in the office by the doctor or nurse. Once the button, or G-tube, is out a small hole will remain. It should be kept clean and covered with gauze until it closes on it's own. The scar that remains will be small.
It's a little strange to think that I'm not so sure I would know exactly what to do if you gave me a baby and bottle and expected me to feed that baby! :) It's been a long time since I fed a baby with a bottle or gave a baby cereal or baby food. As normal as feeding a baby with a bottle is for the majority of mothers, it's normal for me to feed a baby using a feeding tube. Of course it wasn't always so normal. It took some adjusting, which we do a lot when it comes to Sophia's eating. She has reflux, which used to be HORRIBLE, but isn't bad at all anymore (knock on wood!) And Sophia has always struggled with the amount of formula she was given. She needed more calories to grow, but her little tummy just couldn't handle the volume of formula that we would try to give her. Which led to more feedings during the day or LONG feedings in order to try and keep her food down. I remember at the beginning when we would have to feed Sophia for 2 1/2 hours and then let her "rest" for 1/2 hour and then start another 2 1/2 hour feed all over again! It's hard to get things accomplished when your baby is eating ALL THE TIME! But she worked through all of that, and now she eats 5 times a day; breakfast, lunch, "snack", dinner, and at bedtime and each feed lasts 20 minutes. Of course it's hard to get all of her needed calories in for the day through her G-tube AND work on oral feedings, because realistically she just isn't that hungry to want to eat, but it's a work in progress. I used to hate this whole feeding tube thing. It was hard for me to understand there for a while why Sophia couldn't just eat! But it's just not that easy. Low tone, which is common in children with Down syndrome, can make a lot of things very difficult for my little Sophia, that comes so darn easy for other kids! Of course I still get frustrated at times when it comes to her feeding struggles and having that darn button, but there are many times where I am so grateful for her feeding tube and I know that ultimately that precious little tube is what has made it possible for Sophia to be here today!
Sophia has shown such improvement with feeding. Most people can't see, but as her mother I know that she is moving in the right direction and I am very confident that we will get to that day where we will be sitting in the waiting room of our surgical doctor's office and anxtiously awaiting our name to be called to have that button taken out, once and for all!
After about 4 months of dealing with the NG tube, and having to replace it down her nose every week and having all the pesky tape glued to her cute little face, we decided it was time for a g-tube. Plus, we knew that oral feedings were a LONG time away for us, and we were ready to get something more convenient. A gastrostomy tube, or G-tube, is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's a way to make sure that kids with trouble eating get the fluid and calories they need to grow. A gastrostomy is a common procedure that takes only about 30-45 minutes. After spending 1-2 days in the hospital, kids who have had a gastrostomy can get back to their normal activities fairly quickly after the incision has healed.
Not all children with Down syndrome have feeding tubes. There are a lot of children who eat very well and never have any feeding problems or at least never require a tube to help them get nutrition. But there are children, who DO NOT have Down syndrome who do need a feeding tube. Common conditions that might require a child to need a G-tube include: congenital (present from birth) abnormalities of the mouth, esophagus, stomach, or intestines; sucking and swallowing disorders, which are often related to prematurity, brain injury, developmental delay, or certain neuromuscular condtitions; failure to thrive, which is a general diagnosis that refers to a child's inability to gain weight and grow appropriately; or extreme difficulty taking medications. Gastric tubes typically last for several months or longer before needing to be replaced and replacing a G-tube is easily done by a parent or health care provider without any surgical procedures. If and when the doctor decides that a child is able to take in enough nutrition by mouth, the G-tube or button, may be removed. Removal takes only minutes and is usually done in the office by the doctor or nurse. Once the button, or G-tube, is out a small hole will remain. It should be kept clean and covered with gauze until it closes on it's own. The scar that remains will be small.
It's a little strange to think that I'm not so sure I would know exactly what to do if you gave me a baby and bottle and expected me to feed that baby! :) It's been a long time since I fed a baby with a bottle or gave a baby cereal or baby food. As normal as feeding a baby with a bottle is for the majority of mothers, it's normal for me to feed a baby using a feeding tube. Of course it wasn't always so normal. It took some adjusting, which we do a lot when it comes to Sophia's eating. She has reflux, which used to be HORRIBLE, but isn't bad at all anymore (knock on wood!) And Sophia has always struggled with the amount of formula she was given. She needed more calories to grow, but her little tummy just couldn't handle the volume of formula that we would try to give her. Which led to more feedings during the day or LONG feedings in order to try and keep her food down. I remember at the beginning when we would have to feed Sophia for 2 1/2 hours and then let her "rest" for 1/2 hour and then start another 2 1/2 hour feed all over again! It's hard to get things accomplished when your baby is eating ALL THE TIME! But she worked through all of that, and now she eats 5 times a day; breakfast, lunch, "snack", dinner, and at bedtime and each feed lasts 20 minutes. Of course it's hard to get all of her needed calories in for the day through her G-tube AND work on oral feedings, because realistically she just isn't that hungry to want to eat, but it's a work in progress. I used to hate this whole feeding tube thing. It was hard for me to understand there for a while why Sophia couldn't just eat! But it's just not that easy. Low tone, which is common in children with Down syndrome, can make a lot of things very difficult for my little Sophia, that comes so darn easy for other kids! Of course I still get frustrated at times when it comes to her feeding struggles and having that darn button, but there are many times where I am so grateful for her feeding tube and I know that ultimately that precious little tube is what has made it possible for Sophia to be here today!
Sophia has shown such improvement with feeding. Most people can't see, but as her mother I know that she is moving in the right direction and I am very confident that we will get to that day where we will be sitting in the waiting room of our surgical doctor's office and anxtiously awaiting our name to be called to have that button taken out, once and for all!
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