Update: This post is old. There was a big mess concerning this giveaway. From what I can understand, some people did take matters into their own hands after the iPads were not given out in a timely manner and made some giveaways of iPads possible. If I do hear of giveaways for an iPad or any device that would help your child, I will post a link to assist you. I do know that the website www.a4cwsn.com does giveaways all the time. I am sure there are many more out there at any given time doing giveaways too.
If you know of anyone who would like to enter for a chance to win a free iPad, please direct them to this blog---Marissa's Bunny. They are accepting stories for 5 different families to win an iPad. The only qualification is that there must be a child with special needs to benefit from the iPad. Their daughter Marissa has Infantile Spasms, the same type of seizures that Kaitlyn also has. By reading some of the entries on their blog (will go back and read much more later), I see that this diagnosis has changed this family's life. They have a foundation in place and it looks like Marissa's dad works for a kick butt boss! His boss told him if he could get 1000 dollars donated to their fund to help pay for Marissa's surgery, that they would give him 50,000 dollars toward Marissa's surgery and future care!! 50,000 dollars! WoW! So, I guess his boss (bosses) have helped to fund this giveaway and other giveaways for them. I found this blog by reading a fellow blogger's page, Blogzilly. I found Blogzilly through another reader. I have continued to read Blogzilly because he also has a child who has a diagnosis of Infantile Spasms. Now some of Blogzilly's language is a little on the saltier side, but he just tells it like it is. His blog is one of the only male written blogs I read. Not because I don't like reading from the male perspective, just because most of the blogs I read are special needs and written by the moms. I relate to Blogzilly and Marissa's dad and any other parent dealing with Infantile Spasms because I know the feeling of wanting to do anything you can to control what you have no control over.
If the seizures are not controlled, the effects on the person can be very catastrophic. Severe delays physically and mentally occur. My neurologist told us early on that these seizures can be difficult to control. Even if the seizures stop--such as the case with K, you can progress from Infantile Spasms to another type of seizure later on with more than 1/5th of the diagnosed with Lennox Gastautx Syndrome. These type of seizures are also catastrophic. I have said many times over that I did not deal with the seizure diagnosis well at all. I hated to see Katie stop smiling and playing. It was like a DVD was paused during that time. All of her skills stopped or regressed. We would just look at her while she was seizing just praying that God would stop the seizures. We were lucky. The seizures started in November and stopped in Feb. We saw multiple seizures daily--those didn't count the ones we couldn't see. My sweet girl had to take very high dose steroids which did throw her into a remission. Those few weeks of steroid use were horrible, but it worked and I am so thankful that we haven't seen a regression back into the seizures. At our last neurology appointment 2 weeks ago, we got good news that her MRI looked good. We will still take high dose Keppra for several more years as our doctor told us that "the tendency for her seizures to reappear are high." So, we continue to be thankful that our daughter is spared the devastating effects of ongoing seizures. Like I said in my last post, we are dealing with some other developmental issues which may or may not be related to the history of her Infantile Spasms and her Down syndrome. I just take it day by day because sometimes looking at the future gets to be overwhelming. We are never promised tomorrow and we all know that it only takes a minute and your life can change on a dime. For my fellow parents who do have an IS diagnosis, my heart is with you. I pray for the cure of this devastating condition for our children as for the future children diagnosed with this.
Sunday, February 27, 2011
Sunday, February 20, 2011
Questions yet to be answered
It is hard to believe that we are almost out of Early Intervention. Where has the last 3 years gone?! The next few weeks will busy ones as we transition out of EI and transition in to the local school system. My little bug will be going to K3 in one short month from now! We will test next week and then have her first IEP soon after. I wish I could say that I am not worrying about the whole process, but the exact opposite is true. I am terrified. I worry about what the verdict will be for my daughter. What is the testing going to reveal? How will I handle the results?
For the last year the word Autism has been mentioned. My therapists brought this up again a few weeks ago. As in "don't be surprised if they think she has Autism". I value what my therapists have to say. They have never steered me wrong. They have many, many years in the field of therapy with pediatric kids. I am glad that they spoke up and told me what they think. I certainly don't want to go into a meeting blindsided. That statement has left me searching for answers again. We have brought this very subject up with different professionals who did not feel that the diagnosis was appropriate at the time we were evaluated during the past year. These evaluations occurred with 2 Down syndrome clinics and 2 pediatricians over the last year with the last eval being in Nov. (4 different professionals)
I thought that back at the end of the summer I was going to get K in daycare or some type of learning childcare program. Searching for places left me on some waiting lists and ruled out quite a few places. We had it narrowed down to a few places that we really liked, but the class size I felt were too large for K to get the attention she needed. So I did nothing. I let her stay where I felt she would be happiest and safe--with my mom. I cannot change my decision. I did what I felt was right for my daughter at the time. She hasn't had as much structured "learning" time as Kiley and I should have given her. I am praying that she will get to school in the next few weeks and will be able to adapt without too many difficulties. Of course I am thinking that I have hurt her in her learning processes by not letting her go to a daycare, etc. We will know soon enough just how well she will be able to adapt in a structured environment.
In therapy, K likes to look at books. She has only showed an interest in some toys in the last month or so. We do puzzles and blocks during therapy time, but books and pictures are her favorite things and she prefers that over anything else. She doesn't like to make eye contact with us. We can call her name and she will look sometimes, other times, she is looking every which way but at us. Same with therapy. She will not focus if it is blocks or puzzles. She may look at the puzzle pieces, but she won't try to put them in the right place. She does seem to be in her own world often and is content with that. She doesn't like when we laugh loudly, she starts crying when we do that. When I sing and sign to her, she pays great attention to me. She tries to imitate the signs I am doing. She is only following a few simple commands and only when she wants to. She doesn't have a problem being around other people. She doesn't cringe in new environments. She does have some eye issues, with squinting, crossing her eyes, rolling them. Her glasses are being ordered, so if those problems get better with the glasses, we will put it to her vision. If not, is it an Autism thing or a neurological problem? She does have a diagnosis of Infantile Spasms (seizures) Her last EEG and MRI were good. Her neurologist told us at her last visit a week ago that she has a high risk for relapse. The symptoms to look for are some of the same as what can manifest as Autism signs. (the lack of focus, the delays) Add the Down syndrome to it all and we just have a big mess!
So what can we say is the cause of all this? Is this a new diagnosis to deal with? Is this just from her seizures? Is it that she is more profound in her Ds diagnosis? She has done so well in so many areas. She walked at 19 months when she had only just learned to sit herself up at 17 months and crawled at 18 months. She made excellent progress with feeding herself and drinking from a cup with a straw well before her 2nd birthday. But those are just developmental milestones relating to some gross motor skills and maybe learning a few fine motor skills. Her speech is lacking. She can speak, but only when she wants, not when I ask her to. She will sign but it is random, not on my command. She is falling behind. I don't think she has regressed. I think she has retained everything she has learned. She just doesn't seem to be learning anything new. So, I think we are going to have some serious discussions with doctors and school staff on whether we should be pursuing an Autism diagnosis or not. First, let me get through her testing and IEP and lets see how she does with a structured environment.
This is what has been weighing heavy on my mind for the last few weeks as we enter this transition period. Praying that I will find peace through this process as I search for the answers to all these questions.
For the last year the word Autism has been mentioned. My therapists brought this up again a few weeks ago. As in "don't be surprised if they think she has Autism". I value what my therapists have to say. They have never steered me wrong. They have many, many years in the field of therapy with pediatric kids. I am glad that they spoke up and told me what they think. I certainly don't want to go into a meeting blindsided. That statement has left me searching for answers again. We have brought this very subject up with different professionals who did not feel that the diagnosis was appropriate at the time we were evaluated during the past year. These evaluations occurred with 2 Down syndrome clinics and 2 pediatricians over the last year with the last eval being in Nov. (4 different professionals)
I thought that back at the end of the summer I was going to get K in daycare or some type of learning childcare program. Searching for places left me on some waiting lists and ruled out quite a few places. We had it narrowed down to a few places that we really liked, but the class size I felt were too large for K to get the attention she needed. So I did nothing. I let her stay where I felt she would be happiest and safe--with my mom. I cannot change my decision. I did what I felt was right for my daughter at the time. She hasn't had as much structured "learning" time as Kiley and I should have given her. I am praying that she will get to school in the next few weeks and will be able to adapt without too many difficulties. Of course I am thinking that I have hurt her in her learning processes by not letting her go to a daycare, etc. We will know soon enough just how well she will be able to adapt in a structured environment.
In therapy, K likes to look at books. She has only showed an interest in some toys in the last month or so. We do puzzles and blocks during therapy time, but books and pictures are her favorite things and she prefers that over anything else. She doesn't like to make eye contact with us. We can call her name and she will look sometimes, other times, she is looking every which way but at us. Same with therapy. She will not focus if it is blocks or puzzles. She may look at the puzzle pieces, but she won't try to put them in the right place. She does seem to be in her own world often and is content with that. She doesn't like when we laugh loudly, she starts crying when we do that. When I sing and sign to her, she pays great attention to me. She tries to imitate the signs I am doing. She is only following a few simple commands and only when she wants to. She doesn't have a problem being around other people. She doesn't cringe in new environments. She does have some eye issues, with squinting, crossing her eyes, rolling them. Her glasses are being ordered, so if those problems get better with the glasses, we will put it to her vision. If not, is it an Autism thing or a neurological problem? She does have a diagnosis of Infantile Spasms (seizures) Her last EEG and MRI were good. Her neurologist told us at her last visit a week ago that she has a high risk for relapse. The symptoms to look for are some of the same as what can manifest as Autism signs. (the lack of focus, the delays) Add the Down syndrome to it all and we just have a big mess!
So what can we say is the cause of all this? Is this a new diagnosis to deal with? Is this just from her seizures? Is it that she is more profound in her Ds diagnosis? She has done so well in so many areas. She walked at 19 months when she had only just learned to sit herself up at 17 months and crawled at 18 months. She made excellent progress with feeding herself and drinking from a cup with a straw well before her 2nd birthday. But those are just developmental milestones relating to some gross motor skills and maybe learning a few fine motor skills. Her speech is lacking. She can speak, but only when she wants, not when I ask her to. She will sign but it is random, not on my command. She is falling behind. I don't think she has regressed. I think she has retained everything she has learned. She just doesn't seem to be learning anything new. So, I think we are going to have some serious discussions with doctors and school staff on whether we should be pursuing an Autism diagnosis or not. First, let me get through her testing and IEP and lets see how she does with a structured environment.
This is what has been weighing heavy on my mind for the last few weeks as we enter this transition period. Praying that I will find peace through this process as I search for the answers to all these questions.
Saturday, February 12, 2011
212 degrees
Have you ever heard of the 212 degree philosophy?
At 211 degrees, water is very hot.
At 212 degrees, water boils.
And with boiling water comes steam.
And with steam, you can power a train.
Just one extra degree.... can make all the difference.
I was introduced the other day to it during a staff meeting from one of our customer care representatives. Our video was actually the crossing the line video at www.givemore.com. ( the video is not shown in its entirety--you have to buy it I guess to see the full presentation.) The 212 degree phrase was part of that video. Our presentation had to deal with the positives and negatives in your life, at home, on the job, with every choice you make, your friends, your family, your neighbors and even the strangers you meet. Every once in awhile it is great to be inspired by different messages. I like to think of myself as a positive person. A someone who finds joys and meaning in life.
During the Ds journey I have had the privilege of "meeting" lots of moms (and some dads too) with children of Ds. We network via blogs, email, facebook, private and public groups and I am lucky to know a few IRL here in our town. I am grateful for their friendship. When I need to talk about Ds, these women are here and they understand my joys and frustrations. They know what it is like to have a special needs child. We parent differently--advice given isn't always taken, one child's struggle is another child's strength. We come from all different walks of life--different races, different socioeconomic status', and different styles of living. For some of us, the only common link with each other is our children. Some parents with children who have Ds could care less about networking. It is just a personal preference. I personally love it.
Our differences can sometimes bring heated discussions amongst our groups. In the last few months I have seen several ladies "attacked" for their beliefs. Attacks by the very people that you hope can relate to what you are going through. Things got very ugly, very fast. Friendships broken over a difference of opinion. The attacks were uncalled for. Bringing each other down when we should be lifting each other up. All I can say is why?
To my Ds friends---each of you are important to me. You offer me wisdom, a shoulder to cry on, smiles, hugs, laughter, advice and opinions that I appreciate. Thank you for your friendship.
So, I was inspired to share my 212 with a particular group of ladies due to a private message sent to me via facebook. This is my thoughts on 212.....
Have you ever reached the boiling point? 212 degrees to the bad? Stuck in traffic? Late for an appointment? Waiting on someone who is late meeting you? Been insulted? Had a favorite tv show dvr'd only to find out the last 5 minutes got cut off? Been angry at your kids? Had your dog just eat your cherry pie that you were hoping to dig into? Gone on vacation and had it rain torrentially the entire time? Got home and found the wrong food order in your drive thru bag? You get the point. How many times do you hit your boiling point? The last time I hit my boiling point was ___________________!!! (insert your last 212 degree boiling point moment here)
Now, when was the last time you reached 212 degrees for the good? When you gave that extra effort and felt like a million bucks? When were you the steam that powered the train? I admit it. I have way more 212 degrees to the bad than I want. Not enough 212 to the good. 212's are your leaders. 212's are the goals you set and made. 212's is the RAOK you did today. 212's are the people letting you go ahead of them because you have 2 items to their 20 in the checkout line. 212's are the people who smile and mean it. 212's are the people you look up to. 212's inspire you to be better, to do better, to live better. 212's have passion and commitment written all over them. Their choices fuel their goals. I say this often---we have choices in almost everything we do.
To those who are passionate about advocacy, adoption, Ds, therapies, IEP's, the dinner you are going to make tonight, the song you are going to write, the 2 seconds you are going to take off your running time (no I don't run, unless its to the bathroom!) ----Whatever it is you are passionate about, stand tall and hold your ground!! Your voice matters. Your actions count. People are watching and taking notes and making plans. Do not be discouraged. Let the critics say what they want. Ignore them. Obviously they haven't found the positive side of 212 often enough. So much easier for them to find fault then it is to be the catalyst for something good.
To my sweet friends who are making 212 happen for the good I quote Ralph Waldo Emerson. "Do not go where the path my lead, go instead where there is no path and leave a trail......"
Will you be the 212 in someone's life today? Can you find the 212 that will get your passion going? When you find yourself going 212 to the bad, take a deep breath and focus on the good. I think 212 could definitely be a great way to live!
At 211 degrees, water is very hot.
At 212 degrees, water boils.
And with boiling water comes steam.
And with steam, you can power a train.
Just one extra degree.... can make all the difference.
I was introduced the other day to it during a staff meeting from one of our customer care representatives. Our video was actually the crossing the line video at www.givemore.com. ( the video is not shown in its entirety--you have to buy it I guess to see the full presentation.) The 212 degree phrase was part of that video. Our presentation had to deal with the positives and negatives in your life, at home, on the job, with every choice you make, your friends, your family, your neighbors and even the strangers you meet. Every once in awhile it is great to be inspired by different messages. I like to think of myself as a positive person. A someone who finds joys and meaning in life.
During the Ds journey I have had the privilege of "meeting" lots of moms (and some dads too) with children of Ds. We network via blogs, email, facebook, private and public groups and I am lucky to know a few IRL here in our town. I am grateful for their friendship. When I need to talk about Ds, these women are here and they understand my joys and frustrations. They know what it is like to have a special needs child. We parent differently--advice given isn't always taken, one child's struggle is another child's strength. We come from all different walks of life--different races, different socioeconomic status', and different styles of living. For some of us, the only common link with each other is our children. Some parents with children who have Ds could care less about networking. It is just a personal preference. I personally love it.
Our differences can sometimes bring heated discussions amongst our groups. In the last few months I have seen several ladies "attacked" for their beliefs. Attacks by the very people that you hope can relate to what you are going through. Things got very ugly, very fast. Friendships broken over a difference of opinion. The attacks were uncalled for. Bringing each other down when we should be lifting each other up. All I can say is why?
To my Ds friends---each of you are important to me. You offer me wisdom, a shoulder to cry on, smiles, hugs, laughter, advice and opinions that I appreciate. Thank you for your friendship.
So, I was inspired to share my 212 with a particular group of ladies due to a private message sent to me via facebook. This is my thoughts on 212.....
Have you ever reached the boiling point? 212 degrees to the bad? Stuck in traffic? Late for an appointment? Waiting on someone who is late meeting you? Been insulted? Had a favorite tv show dvr'd only to find out the last 5 minutes got cut off? Been angry at your kids? Had your dog just eat your cherry pie that you were hoping to dig into? Gone on vacation and had it rain torrentially the entire time? Got home and found the wrong food order in your drive thru bag? You get the point. How many times do you hit your boiling point? The last time I hit my boiling point was ___________________!!! (insert your last 212 degree boiling point moment here)
Now, when was the last time you reached 212 degrees for the good? When you gave that extra effort and felt like a million bucks? When were you the steam that powered the train? I admit it. I have way more 212 degrees to the bad than I want. Not enough 212 to the good. 212's are your leaders. 212's are the goals you set and made. 212's is the RAOK you did today. 212's are the people letting you go ahead of them because you have 2 items to their 20 in the checkout line. 212's are the people who smile and mean it. 212's are the people you look up to. 212's inspire you to be better, to do better, to live better. 212's have passion and commitment written all over them. Their choices fuel their goals. I say this often---we have choices in almost everything we do.
To those who are passionate about advocacy, adoption, Ds, therapies, IEP's, the dinner you are going to make tonight, the song you are going to write, the 2 seconds you are going to take off your running time (no I don't run, unless its to the bathroom!) ----Whatever it is you are passionate about, stand tall and hold your ground!! Your voice matters. Your actions count. People are watching and taking notes and making plans. Do not be discouraged. Let the critics say what they want. Ignore them. Obviously they haven't found the positive side of 212 often enough. So much easier for them to find fault then it is to be the catalyst for something good.
To my sweet friends who are making 212 happen for the good I quote Ralph Waldo Emerson. "Do not go where the path my lead, go instead where there is no path and leave a trail......"
Will you be the 212 in someone's life today? Can you find the 212 that will get your passion going? When you find yourself going 212 to the bad, take a deep breath and focus on the good. I think 212 could definitely be a great way to live!
Sunday, February 6, 2011
Birthdays
This past Thursday my son celebrated a birthday. It is a time to celebrate a special day for him and for us. He came into this world already loved by us and by many others. What a blessing that is, to be loved and to know that you are loved. I am sure he does not realize the depth of our love for him. I can't help but contrast that with children who have not been blessed to be born into a family who love them unconditionally. Children who have never had someone to hold them and tell them that they are loved. How can this be? How can we bring children into the world only to abandon them? To leave them in orphanages to have the same day play over and over for them? To never feel a mother's kiss on their chubby cheeks, to not have someone wipe their tears away, to not have someone rock them to sleep, to never know what a bath feels like? So many things that they have never experienced. I have prayed in my heart to hear what God's word is to me on this very subject. I know that I am to keep praying for these children, to do whatever I possibly can to help their plight out of these orphanages. I want all of these children to be celebrated just like my son was this past week. I want someone to sing Happy Birthday to them. I want them to eat cake and blow out candles and thank God for another year. We can help these children. Every prayer, every dollar makes a difference. Consider Reece's Rainbow if you want to make a difference in the lives of children whose birthdays do make a difference. At 5 years of age, these children leave the baby orphanges to go to a mental institution to live the rest of their lives out. If we can save them before that happens, we will change the outcome of their lives. If you are thinking of adoption, please think of these children. Give them the chance that they deserve. If adoption is not in your plans, consider being a prayer warrior or a monetary donor. You can make a difference!
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