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.
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How is it that I didn't know you had a blog? Please forgive me. I just saw a comment where Cory Stockwell Dunn said she just got caught up on your blog and so I came straight here. I feel so bad that I haven't been following you when you have been such a great support to us. Please know that you are officially being followed by me now and I can't wait until I have the time to get caught up on it. Give Kaitlyn a big hug from Ella!!
ReplyDeleteyou are a terrific mama....i really didn't realize all that y'all were going through with kaitlyn! so glad the seizures have stopped! much love and hugs!
ReplyDeleteHi i have two boys that have asd,aspergers ,adhd ,add,sensory processing disorder and my youngest one is delayed bye 2years and is at kindergarden level so i was wondering if you no of anyone that would be able to help us out with 2 ipads for both of our boys would benieft from them so please help hope to hear from someone soon
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