Sunday, January 30, 2011

Cole Turns 3!

Cole had a hard week. He has not been sleeping well and had rescue meds three times. That has not happened for a while. He seemed to capitalize on his birthday parties, having one on Sunday right after our little family dinner/party and another on Sat morning before everyone came over. The other was in the middle of the week, during a set of storms. Barometric pressure seems to be effecting him more and more lately. He also figured out how to disconnect the line from the feeding pump...while it was running! Probably harder on mom than him!Once again, his seizures are changing and creating a whole new pattern. This roller coaster ride called Dravet always has plenty of twists and turns. He still is the cutest little boy around (not so little anymore...tear)! This picture is where he is blowing out his Aunt's candles, at a totally different party, and accidently singes his eyelashes! It's a good thing they are so long!As expected, Cole really did not care too much for any celebration. He did enjoy blowing out the candles and requested that we do it again and again, demanding different songs such as Jingle Bells and Jesus Wants Me For A Sunbeam. Whatever he wants, right?! He couldn't have cake, so appeasing his song preferences was not too much to ask. Year 2 brought so many changes; I wonder what year 3 is going to bring.We had a combined birthday party and good-bye open house. We tried the super hero theme since that is how Cole announces himself to anyone that is new. We call the g tube his "superhero button" and try to make him feel like it is special. He has started taking it one step further and introduces himself in a loud voice saying, "I'm a SUPERHERO!", then promptly flashes the unsuspecting person and shows them his button. Funny the first time, not so funny in places like church and the hospital. Oh well ;) Here are my attempts at fondant cakes. What can I say? I'm just not Cristine!

Nemo- brought to you with help from the D family and Super HeroThe move is finally starting to be real this weekend. We have started selling our furniture and the house is starting to really look like it is empty and in "move mode". Our beloved girls are also leaving us. We know that they are going to a great home where they will be loved and spoiled. I'm just wondering how Cole is going to take it when he can't go out to the garage to visit or look out the window for 'Lani and 'Ily. 10 months without a dog is probably going to be really hard for him. Hopefully we can get him into school right away once we move.

Happy Birthday Super Cole! We love you!

Monday, January 24, 2011

An Announcement

We interrupt your regular programming for an announcement: After 7 months of suspense and a year of looking for a new job, WE ARE MOVING!Not to the White House, but don't rule it out. Just give it a couple of years.

If things seem hit and miss around here, it's reflective of my mental state. When I am not consumed with the immediate future and caring for my Superhero (AKA Cole), my thoughts are geared towards this impending change. After "crying wolf" for so long, Brian got offered not one, but three jobs in one week! Apparently, now is the time. We chose DC for multiple reasons, now the worrying begins.

Top of the list-Where will we live? There are so many specifications that we need for Cole and his dog when it comes this fall. Distance to the hospital(s), fire station, metro, church, grocery stores, etc. play a part. It will be hard leaving our support group, not having 10 Dravet families within an hour (There are only 3 families in the whole state of VA). It's scary! It is also exciting!

I need a new: gastroenterologist, cardiologist, opthamologist, dietitian, pediatrician, speech therapist, occupational therapist, neuro-pyschologist plus all of my doctors. Brian doesn't need specialists...or doctors really. The guy never gets sick, which is convenient! I'm predicting at least three months of constant doctors appointments trying to establish care.

Have neurologist. Check. I think that is the only thing I can check off of "the list".

All of the little things that are entailed in a cross-country move add up. I've done quite a bit of moving in the last 10 years, but nothing ever this big, with this many people. The last time we moved Cole was 7 months old, not really mobile, and it was about 20 minutes away. I'm going to have to dust off my organizational skills...they have been put in to hiding. It has been stated that we will need a magic wand to get everything out there that we have here. Um, I agree. However, when I am in the throes of being overwhelmed...I think of Cole. This is the best thing for him. It means so many new and exciting things can happen, for him.

As far as we know, our new insurance covers Miami Childrens In-Network!
A new school! I will just keep that nasty little (read: BIG) IEP post about our current district kept in my drafts!
We have loved our doctors here. However, there is no one that specializes in Dravet. There will be someone in our backyard and we have already made contact. This way, when we are in-patient, someone will know what they are dealing with.
VA Medicaid covers Frisium and Stripentol-two drugs that are not FDA approved and have to be shipped from Canada and France. We really think these drugs will help!
More therapy!
and my hope of hopes...RESPITE! This sends shivers down my spine ;)

We'll be there just in time for the National Epilepsy Walk and close to the IDEA League's headquarters. Hopefully, with our skills we can help support these organizations that have been such a support to us.

This is not just for Cole, it's a good career move for Brian too. I am looking forward to him not being on-call 24/7. His CNN moments are just going to have to stop for a little while. Twice in one month is enough! ;) So, we are making our preparations. If anyone has any tips, tricks, or knows medical personnel out there...drop us a line!

Thursday, January 20, 2011


This came from a blog that I frequent. The link is on my sidebar. A few of my friends are writers for KIDZ. It is a place to get that little dose of inspiration or encouragement to keep going.

Today's post really touched me. There are so many times when I have wished that I could just put a sign around my neck and not have to explain, or hope that people could read my mind and understand how I felt. This story was just a reminder that everyone feels that way.

We need to look past the outside and the "I'm fine" answer. I want to be able to read others signs, and maybe get to the point where I can just ask nicely for others to read mine. Sometimes I feel like it is in blinking, neon lights on my forehead. "I REALLY DON'T HAVE IT TOGETHER!" Other times the message is so subtle that only those closest to me can decipher it. I want to be able to see past what seems to be happening, and hopefully help others on this journey we call life.

Click HERE to read.

Tuesday, January 18, 2011

Weekend Mayhem And Mishaps

Let's just say that last week was interesting. Especially for Brian.

We spent the majority of last week in Southern Utah. Brian had to work down there and it was a great opportunity to get out of the freezing cold weather we have been having. I appreciate snow maybe one week of the year (during Christmas break) and when I want to go skiing or boarding, both of which I have not done for a good three plus years for obvious reasons. SO-the weather was tempting.

Daddy worked, Mommy attempted to use her sewing machine, and Cole hung out with his favorite...grandpa. Things went fairly well until Friday. To put it in medical terms, Cole had a 20 minute complex partial seizure that generalized into a tonic-clonic. We gave two doses of rescue meds. His sats dropped into the 60s and then when he was coming into his post ictal phase, he experienced post ictal blindness (again). Really, this is rare? Sure seems to be happening a lot. One eye came out of it but the other would not and he continued to have sub clinical status, small complex clusters and one more short tonic-clonic episode for the next hour. I almost gave a third dose of rescue meds, but according to our protocol, we have to go into the ER for monitoring after three. He seemed to be pulling out of it, so we held off from the third dose. So, in layman's terms...Cole seized for over an hour. That has not happened for a long time, since summer.

We came home on Saturday and hosted a family gathering. After the guests left, Brian gave us incentive to have our first ER visit of 2011...not Cole. While trying to split two rock-solid frozen pieces of meat with a knife, he slashed his fingers and ended up needing stitches. It was a lot of fun trying to figure out how he would get to the hospital. He told me he was going to drive himself...uh, sure! Shock will do funny things to you. This is especially fun as Daddy can not actually remember ever having to go to the ER. He thinks he went once when he was 6 or so for stitches in his chin, but he can't remember it. That's okay! Cole and I make up for his quota.

Sunday, we decided to continue to be brave and take Cole to church. He did not do so well having stayed up until 11:30 pm the night before with the chaos of Daddy's wound. So, we made a plan that Brian would take him home for a nap and I would teach my lesson. I could catch a ride home later with a friend. I enter the room after I finish my class and my neighbor approaches me. She asks, "Is Brian with Cole?" Um..."Yes?" She then proceeds to tell me that she saw my husband call for assistance and then run out of the building, without my son. There could definitely be a problem here. I then dash off in high heels and start to call Brian's phone...voicemail. I call his other one (hey, at least he only has two; when we were first married he had three!) and he does not answer. I try both again. I am now starting to panic, certain Cole is in status, thinking Brian is on with 911. If we call the paramedics at this point, it is a big deal. I come out of the building, straining to hear sirens and trying to locate my family. I turn around and see five grown men standing in the rain, with strange looking apparatuses, surrounding my car (which is running). I then kick into mental overdrive and think that Cole is locked in the car AND he is seizing! Lucky for me, my husband just locked him in a running car. He was in his car seat with the heater on, just wondering what was happening outside. I got to have a fun conversation with two police officers, a lawyer, and an electrician, all from our church. They had been working for a while with no luck. Some were on the phone with various law enforcement agencies, including my husband. I proceeded to tell them why we did not have an extra set of keys was because Brian lost the other set and then told them that there was a valet key hidden on the car. I put my face up to the window and asked Cole if he was okay. Cole just said, "You need to open the door Daddy!" LOL. Brian found the key and proceeded to try and open it with one hand (due to his injured fingers). Another man grabbed it from him and tried to pry it open with a knife. We were joking that we would have to shoot it open and turned to the officer that was packing. No fun, the knife guy got it open. Brian then went inside to wash his hands and I slipped into the passenger seat. I then got to smile and wave to the two police cars and the fire truck that pulled into the parking lot. Oh, the fun!

We can say this...our life is never boring!

Monday, January 10, 2011

Come What May

I'm trying to get to the "and love it" part.

I called 4 Paws For Ability this morning. It seems that the summer classes just filled right up and we can not get in until October. It feels like we will never make it for 10 more months before we get Cole's special dog, but there is a reason for everything. Maybe someone will cancel. Maybe we will finally move and need to get settled into a new place before we add a new member to our family. There could be a lot of answers. We're just going to have to be patient.

However, Cole is doing great. He has not had rescue medication since a few days after Christmas. He's learning new words and even making up songs. Most of it is hard to decipher, but I heard one the other day where I caught the words, "Spiderman" and "awesome"! He has started at a small pre-school down the street two days a week. We are hoping to get him into the district as a paid student for two more days a week. The whole nurse thing is a real roadblock, but we'll see what happens. Maybe someday we can finally get a real IEP.

For now, the diet is going strong and the g tube is proving its worth every day during meds. We're still waiting to hear back about Miami. Hoping and praying that the insurance will let us take him there. I think 3 days of EEG data and an MRI would be really helpful for our treatment plan.

I can't believe that he's going to be three in a couple of weeks! I guess that I need to plan a party? We have never had a big party for Cole since he has not done well with big groups of people. He's been doing great lately with groups for short periods of time. We even went to church all together again yesterday. Plus, we took him to Costco for 20 minutes, a real test. He was fine! He wanted to push the huge cart by himself, but no big seizures. ;) There will be no cake for him, but I know some other Keto moms that have made a play-doh cake for the birthday kid. Where's Aunt Cris when you need her skills?! Oh yeah, Hawaii...dang it.

So, Come What May And Love It. I am loving that we are not in the hospital. 3 of our friends have been in the ICU in the last week! Right now I am also loving that Cole is running around the house pretending to sneeze. Gotta love the iPad! That thing teaches him new stuff all of the time including, what a sneeze sounds like.

Wednesday, January 5, 2011


Lists are my friends, just ask Brian. I make a lot of them. Some have goals, some have tasks, others just random information gathered into one spot so I don't forget it.

Last year for New Years, during my list making, we made a goal to meet new people and make more friends. This is something that we have done before, but wow I never would have guessed what 2010 would bring. I'm a social person; wouldn't qualify myself as a butterfly, but I like people. I'm also married to the man who knows everyone and I can't take him anywhere (out of state included) without him running in to someone he knows. However, he still doesn't get out much and rarely has man time. We both needed to continue this goal. As 2010 dawned, I felt the lack of people in my life and decided to strive to do better. My monthly parties had come to a halt, for obvious reasons, and I wasn't getting out much, except for those rare times that L could get off work and she would come and rescue me (or we would just rescue each other) thanks L, I miss you!

My parents taught me the importance of being a good friend. They are good people. If someone needed a bigger car to fit everyone so they could go and visit family, in Arizona, they lent theirs..saying, "Keep it as long as you need it!". I remember my Dad driving to SLC (3 hours each way) multiple times a month with a friend, so he could get radiation treatment at the Huntsman Cancer Institute, because his wife could not take the time off of work. They would go down, get treatment and come right back. Every year we would plant someones garden because they were not physically capable of all of the digging. I grew up in a small, rural farming community where the theory was, "What's mine, is every ones". Everyone would help others finish their harvest. No one was done until every one was done.

My parents have a large group of friends that they treat just like family, so in addition to my many aunts and uncles, I had "aunts" and "uncles" everywhere, looking out for me. They continually make strangers feel like they are a part of the family. Even if they just met someone, it was completely normal to see my Dad putting an entire box of potatoes in their trunk before they pulled away. We have people adopt our family all of the time. The more the merrier we say! We have even had people (not related to us) come all of the way from Hong Kong to attend our family reunion! I loved to bring groups of people home from college. My Dad would entertain them and my mom would feed them. The stories go on and on. It wasn't all just about serving others, they played plenty of practical jokes on their friends. They still keep in contact with and vacation with a bunch of them to this day even though they have moved from my home town.

So if I act like we've known each other forever, when in reality we just met, blame in on my parents!

There are too many people who have come into our lives during 2010 to give proper shout-outs to. Thanks to the good 'ole Internet I made deep connections with random people in random cities (some even just down the street!) last year, creating bonds that most take years to make. We can provide support to one another, and I would not have met them any other way. I think it is different than the average friendship because we have been let in on the secret, our kids are the greatest, most special kids in the world. Okay, I am biased.

Brian and I were talking the other day about how some of the people who are really important to us right now, we have barely known for months. I am just grateful for the opportunity to share their journeys and I'm thankful that they choose to share ours.

Saturday, January 1, 2011

Fresh Start

Let's be honest. 2010 was hard.

Not a lot will change in 2011, it could actually get worse *shudder*. The only thing that I am probably going to have control over this year is my attitude. It seems possible when I get real smiles like this one.I have noticed a change in my thinking (paradigm shift for those of us who speak therapist) in the last few months. Part of it had to do with my lovely friend, the grief cycle and that nice stage called acceptance. We have come a long way, from not even leaving the house for days to trying new, scary things like going to the mall to see Santa. I'm not ready to go wild with Cole anytime soon and try to return to a "normal" routine. I'm not even done freaking out about the impending airplane ride to Miami. This one is keeping me up at night. No hospitals at 35,000 feet. Yet, I can see how we have come leaps and bounds from where we were even this summer.

I know that each person has their own way of dealing with something major (crisis in therapist talk) happening in their lives. I am just proud of how we are coming along. I'm not perfect by any means and still have a long ways to go. I'm just glad that we are trying to give Cole the best opportunities that he can have right now. So even if that means my child ducks under the rope and tries to ride the cow in the nativity scene, at the temple, at least he can walk and is interested enough to try it ;)Yes, his dad took a picture. He is his mother's child.

"Come What May, and Love It!" is our extended family theme for 2011, from this talk. I am now a proud owner (along with all of my siblings) of a vinyl sign with this saying. A nice reminder to just react to adversity with laughter and a smile.

So here's to 2011...may our attitudes be positive and our trips to the hospital be few!
Photos by Capture Me Candid