Thursday, February 16, 2012


"The best vacations are ones that someone else pays for." ~ Me

I like to watch episodes of How I Met Your Mother on Netflix. One of the rituals this group of friends has is to have an "Intervention" whenever they feel like something needs to change in another friend's life. They have a banner, write letters, everything. Sometimes they intervene for silly things, other times it is for something really important.

I needed an intervention. Thank goodness for my husband's job.

This last year has been so full. Full of change, drama, joy, grief and a whole bunch of in between. For someone who analyzes herself way too much, I had not even realized just how close to the deep end I was getting. I knew that I was "burned out", but not to the point that I was ashes. This article helped. Thanks, C!

With this, moving across the country, new jobs, school, my own health, nursing, Slugger, insurance, finances, family, keeping Cole alive and all of the other stuff that goes into our daily grind...I am beaten. Now I recognize that everyone has choices. Everyone has decisions that they have to make and hard stuff happens to every single one of us. I think that mothers especially almost seem to celebrate putting themselves on the back burner. It is looked to as being honorable and self-sacrificing is heroic. I think so too; to a point.

In order to be the conductors of this runaway train that is our life, we need to be in tip top shape. Physically and mentally. It's no wonder that even Brian, King of the Laid-Backs, has been short-fused lately. We're tired. We've been the equivalent of a cranky toddler that hasn't had a nap and needs lunch.

Brian had to go on a business trip for a week. He has already traveled a lot this year, and it is only February! He tried to convince me to come with him for a couple of days. The hotel was paid for. He had Per Diem every day for food and transportation. He had some Sky Miles. I refused, time and again. I couldn't leave Cole, we have no money, it was being irresponsible, Cole has been sick, "what if", who would watch Cole, I threw just about every excuse in the book out there. I shut him down multiple times and said that it sounded nice, but it just wasn't going to happen. We have never both been away from Cole at the same time, except for one short weekend where we went to a Dravet Conference when he was first diagnosed. It was anything but a vacation. We paid to learn and were constantly in communication with home. It was basically like cramming for Cole's life final exam and we were totally exhausted by the time we came back. Realizing, that our life was never going to be what we thought it would.

Eventually, after multiple days and multiple conversations, Brian convinced me that I was not going to have another opportunity for a break, which someone else paid for, in a very long time; perhaps, ever. In the end I went, Cole was fine and I did absolutely nothing. Which was exactly what I needed.

I really did not get to spend a lot of time with Brian since he was working the entire time I was there. However, we proved to ourselves that we could do it! That means that we could possibly do it again :)

I think that we all need interventions. From our friends, family, or even to intervene on behalf of ourselves. Stress is out there. Life happens. Every now and then though we just need a break. Even if it is an evening alone. Research is now saying that a parents stress can change a child's DNA...even after they are born! As a mother, it is your job to nurture your children, however you also need to nurture yourself. If you are not able to take care of yourself, how can you take care of them?

I am far from being "refreshed" or "relaxed" but I do know that I am going to try and do some things for myself this year. Things that have absolutely nothing to do with Dravet or my boys. I still need to do things for and with all of the important things in my life, but I need to add myself to the list too. I am finally starting that gourmet club that I have been talking about for 4 years. It is something that is going to be great, and hopefully fill in the gaps that I have been finding. Cooking which is a big passion of mine. Getting together with women and hopefully making some friends, since I miss my old ones so much and have not really made new ones. I'm far from perfect, but this is a start.

Moms, intervene for yourself. Take some advice from Dr Phil, sometimes he knows what he is talking about ;)

Wednesday, February 15, 2012

Dexa Scan

I first heard that I should get Cole a Dexa Scan at a Dravet conference. I wrote it down, shelved it in my "To-Do, But Not An Emergency" list. I was overwhelmed with information at that meeting, it was like cramming for finals. You retain some of it, and the rest is just gone. Occasionally bits and pieces come floating back. I had thought about it a couple of times over the years but did not feel like it was something that we had to do right away. Fast forward a couple of years....

Cole has broken both of his feet, right across the top. The first time (right, July '09) was while doing proprioceptive pressure exercises. The second time (left, Oct '10) was when he fell down the stairs after having a small seizure that threw off his balance. After the second break, I got him a referral to see a bone specialist and to get a Dexa.

Dual-emission X-ray absorptiometry is a means of measuring bone mineral density (BMD). Two X-ray beams with differing energy levels are aimed at the patient's bones. When soft tissue absorption is subtracted out, the BMD can be determined from the absorption of each beam by bone. Dual-energy X-ray absorptiometry is the most widely used and most thoroughly studied bone density measurement technology. The DXA scan is typically used to diagnose and follow osteoporosis. It is not to be confused with the nuclear bone scan, which is sensitive to certain metabolic diseases of bones in which bones are attempting to heal from infections, fractures, or tumors.

Cole waiting for his procedure
The doctor from Childrens Hospital of Philadelphia (CHOP) explained to us in this class that Anti-Epileptic Drugs (AEDs) can have an effect on bone density. Couple that with a genetic disorder that might have metabolic co-morbidities and you can have serious bone issues starting at an early age. Calcium and Vitamin D are important to add to the list of supplements if you have a child with Dravet.

Our actual appointment was an absolute nightmare. It included 6 hours in the hospital, three hours waiting in the waiting room just to be seen, two major seizures, our portable tank running out of O2, Cole turning an awful shade of grey from not breathing, me running around in public with urine (Cole's) streaming down my clothes, a hasty late lunch in a not-so-nice part of DC where Cole and I were the only Caucasians, having to re-do the dexa, Cole having so many small seizures that he couldn't hold still for the procedure and so the results were not optimal anyway, having to draw labs on a post-ictal child, and someone being offended by me pulling down my sons pants to give him rescue medication while he was having a seizure in public. And this is the Reader's Digest version :) I self-medicated with Cafe Rio and Georgetown Cupcakes when it was over!However, through it all we learned that Cole's bone density is not horrible, but it is not good. We need to keep an eye on him for possible fractures since he does not feel pain like the rest of us. We need to follow up in six months with the bone specialist and we will repeat the Dexa Scan. This is a very low radiation procedure, so if your child has Dravet, it is worth looking in to. It is as painless as an x-ray, they just need to hold still. Dexa Scan machines are not available at every hospital though. The pediatric software is hard to come by and we had to go to Childrens National Medical Center. See if your Childrens Hospital has one!
Photos by Capture Me Candid