School Has Begun

Noah's first day in the first grade was a great experience! He had his Spiderman shirt & his Super Hero backpack! All set!
His teacher is phenomenal! I'm so impressed with her willingness to not only teach my child but to keep him safe. I purchased a couple of books for her to use in the classroom. The first was "Taking Seizure Disorders to School: A Story About Epilepsy ." This is a cute book that attempts to simplify the seizure discussion for first graders. It's main focus is to explain what a seizure is and what it looks like. However it also emphasizes that the epileptic child is just like every other kid. They like to play on the playground, go to science, work on their math and everything else the other classroom kids enjoy doing each day. I think the book allows for the teacher to skip some pages that don't apply to that certain student. For example, Noah's seizures are tonic clonic, so no reason to read about focal seizures to the other first graders.

The second book was That's What Friends Are For. I love this little book. It tells a story about an elephant that hurts his leg and can't walk the distance he needs to travel to see his cousin. Each one of his friends comes along and gives him advice. The Elephant says "Thanks" but none of the advice will work for him. Eventually the Lion teaches all of the animals that friends don't just give advice, they actually help each other. It was a really sweet read! One that is easy for a first grade class to understand and put into action.

Noah's teacher taught the kids "Noah's Emergency Plan" on the very first day! If the teacher says those words, the students will immediately stand up and go to the room next door. The first child in line will communicate what is happening in their classroom to the other teacher. Noah's teacher will stay with him as long as necessary. The best part is.... They are practicing the plan.

By this coming Monday, all of the teaching staff at Noah's Elementary School will be fully seizure trained. The District Nurse and I have trained Noah's teacher and 5 other support staff on the use of his Diastat as a separate training class. In addition, the school has developed a plan so that someone has their eyes on Noah at all times - recess, lunch, lunch recesses, etc.
What a wonderful school and teaching staff we have for Noah! I love it. It is beyond my comprehension how far our school goes to help my child. Ultimately, he is my responsibility and I really expected to have to be at the school with him much more. Our Principal just does such a great job with these Special Needs Kids. Not only is a great for my child but it is a really good thing for every day kiddos to have experiences with kids that might be a little different than themselves.

Love our School!

Awakenings

My child has failed four different meds. He has been through side affects - the sleepiness, the grogginess, sadness, anger, crying, irritability, bone marrow supression, elongated seizure duration....

Because of all that he has been through, I appreciate these moments of AWAKENING. Noah's in one of those times right now. The "why" questions continue to pour out of him. He is expressing his unhappiness with his brothers when they aren't being fair. He is remembering past events so much more clearly.

Today Noah came in the house carrying this huge pine cone that he found on his walk with his big brothers. It was really heavy and made marks on his little arms. But he was sooo proud. He kept talking about it's color, how big it was, where he found it and where he wanted it to be kept.

I love these moments!

Does your Keto Kid sleep in your bed? In the beginning of Noah's epilepsy, he slept in his crib. Until, around 2 am one morning, I heard a seizure. I don't know how I heard it, it was silent. But, I woke up suddenly, walked into his room and he was seizing face down into his sheet. I was never the same again.

I believe the parent of an epileptic child sleeps in a lighter phase. We have to. We have to hear our child throughout the night.

Noah has been doing incredibly well on the diet. If we make it until September 5th with no more seizures, we will have had only 2 seizures in the last year. For us - a miracle. From 150 down to 2. The tricky part of our situation is that his seizures seem to be during that delicate time of sleep for all epileptics - just after dozing off or just before waking.

As a result, he is back in our bed. We put him to sleep in his bunk bed with his brothers. (Baby monitor on). As soon as my husband and I go to bed, we bring him in with us. I've struggled with the whole situation because I want him to experience normalcy as much as possible. I want him to have that fun time with his brothers - chatting after the lights are out. They open up to each other, chat, laugh and fall asleep. But, I don't feel like my other boys should have the responsibility to hear/feel a seizure while they are sleeping. I don't want their bodies to adapt as mine has to a lighter sleep that detects seizures.

Our solution was to bring him in to our bed again. I let you know how it goes. At least he is incredibly snuggly! Could do without the teeth grinding though!

Make and Takes

My sweet sister-in-law, Marie, is one of the 50 Power Mom Bloggers (Nielson Ratings). While visiting home in July, Marie asked me to do a guest spot on Special Needs Kids-Epilepsy & Keto. Drop on by Marie's blog and check out my post. It was fun & I hope it gets the word out about the Diet. I would do just about anything to spare another child and family from seizures....

http://www.makeandtakes.com/living-with-a-special-needs-child

Smiles!
Cath

Preparing for School

Noah starts 1st grade in a few weeks. Although, I'm a bit nervous to place him in the care of others from 8:30am - 2:30pm, I know it will be a great thing for him. He loves school, loves friends and really enjoys the independence that accompanies attending public school. Here are a few of the steps we've taken to ensure Noah's safety and help us to feel confident in the care he will receive at school:

1. 504 Mtgs. - We meet with the Principal, the 1st grade teaching staff as well as those teacher's whose classrooms are nearest to Noah's room, the district nurse, music and science teacher, teacher's aides and me. I wrote all of my concerns out prior to the meeting and emailed them to his 1st grade teacher and Principal. I wanted to have "a plan" laid out for handling the Diet as well as any possible seizure activity. (classroom, playground, lunchroom, music or art class, bathroom, p.e., library, etc.)
2. Letter written to the parents of the children in Noah's classroom that explains both his epilepsy and his Diet. The letter requests that the parents never feed Noah anything, that their children not give food to Noah or other children and that if Noah has a seizure at school, they are more than welcome to call and ask any questions in order to help their child deal with what they have experienced.
3. We adjusted Noah's meal times to allow him to have a small snack during 1st grade snack time. His lunch meal will also take place during the school lunch period. I was able to adjust his medication times so that he never has to receive meds at school. That is a tricky situation, so I'm glad we were able to adjust his med time.
4. I'm searching for just the right book that can be read to Noah's first grade class explaining epilepsy and helping the other children to understand Noah a little bit more.

Part of me is sooo nervous that another child with make fun of or be mean to my child. But, there are plenty of sweet first graders that will be kind to him, watch out for him and treat him with respect. He is really excited for first grade! I'm excited for him.

Here we go....
Back to School!