Little Things that make a BIG difference

Most every day I follow up with families I have met who have children with ASD/Epilepsy.  I wish sometimes I had a jet and could just fly over to wherever you are and help out for a few days...but in the real world, that isn't possible.  So, I thought I would make a list of the little things that always helped me make it through --and especially during busy months.

1.  Keep a bag at the door.  This bag should contain anything you need on a regular basis for your child, a days worth of meds, picture cards, sensory toys, favorite items, a change of clothes, diaper, wipes, and a favorite DVD or two.  If you have to rush to the ER, you're ready, if there is another emergency- you have enough for a day- and the rest can be brought to you later...if you make a trip to a family members home, there are things for your child that they enjoy that will keep them happy.

2.  Keep two copies of a list of your child's CURRENT medications in your purse.  You'd be surprised how that in an emergency it comes in handy.  Or if you are at the doctors office, you can just hand them the list to attach to your file--it saves time and you don't have to sit and spell them out for the nurses who are unfamiliar with Anticonvulsants.

3.  Make a Procedure bag.  Get a gallon ziploc bag and put the following in it:
*EEG wire (save some when they have one done)this is a great visual for kids so they know if they are going to be "plugged in". 
*A "No No" - this is a small splint that covers the whole arm and velcros together-if they've had an IV, they've probably had one on- keep it. (some hospitals don't keep them and it comes in handy) 
*Children's Anbesol (night time) you can put this on the area prior to a stick and it "numbs" it some to keep it from hurting quite so bad.
*Take pictures of your child in hospital situations and then keep them in this bag---when they see themselves in a hospital bed, they know what to expect.  This is especially important for nonverbal children. (Also take pictures of their regular physicians, so they can anticipate a visit.)
*Anything that can help you and your child get through a particularly difficult procedure, put it in there ( favorite band-aids, a special toy, stickers they really like)
PUT THE PROCEDURE BAG IN YOUR BAG AT THE DOOR.

4.  Keep a list of your child's daily schedule inside the door of your medicine cabinet.  If something were to happen to you as a caregiver--somebody needs to be able to look at the schedule and be able to care for your child.  This should include all med times and doses, any other medical therapies, nap schedule, and bedtime schedule.

5. Daily record.  It is important for you to keep a log of your child's successes, changes in behavior, seizures, bowel changes, illnesses, and any medication changes.  With epilepsy, when your child has breakthrough seizures the first question a doctor will ask you is "What has changed?"  If you don't keep a record, you will have no idea.

These are just a few ideas, but were some of the most helpful to me in dealing with a chronically ill child.  You never know where you will end up in a day, so being ready at a moments notice, will give you peace of mind and allow you to BREATHE.  Taking a moment every day, just to yourself, even if it's just 5 minutes, can also make a big difference and can help you recharge.

Little things, and a little organization can make a big difference, for you and your child.  Take the time to implement them and then you will be prepared for anything!!

Blessings,
Beth

Food for Thought

November is National Epilepsy Awareness month, and on the 7th of this month, the birthday of our precious Caleb.  Many are aware of Epilepsy, of its existence, but beyond that- to really be compassionate towards those families dealing with Epilepsy, to help them, to be supportive of them- that is an even bigger goal.

During this season, it is difficult for many with Epilepsy or other disabilities who have food restrictions.

So many get togethers and holiday celebrations rotate around FOOD. 

For those with allergies, make sure and remove all ingredients from your home that could be a problem for any guests.  Reading labels is important.  And make sure you let others who are bringing foods to your gathering about any allergies.  This makes it so much easier for small gatherings.

For larger gatherings it is easier to make foods ahead of time and place them in serving size portions and freeze them individually.  Then you can take out SAFE FOODS as you need to in an individual size.

Our Caleb was on a gluten/dairy/yeast free diet as well as the Ketogenic diet (a modified dairy free version) for his health.  This was extremely difficult to follow but it was necessary to follow for Caleb's well being.  It was difficult to be part of Thanksgiving and Christmas...but I made ahead foods for him and always put them on the same plates that everyone else had. 

The hardest part was when we moved to tube feeds, for me. For the first several months we didn't eat anything around him and then later we were diligent at making sure his favorites were no longer in the house.  He adapted so well.  During holiday times we always made a quiet safe place for him to be with his favorite things.  Just being with him was the most rewarding time...so think of that if you have a loved one who is unable to eat.  Just spending time with them is a blessing for them and for yourself.

Make the most of the holidays with your family and while the mountains of food will be present--don't let that keep you from being with each other and enjoying togetherness.

Those moments are the things to be most THANKFUL for.

Blessings,
Beth