Sunday, May 31, 2015

Proof is in the Video.




There is no better proof CBD Oil is helping Carly than watching a video.  As I have mentioned many times before the seizure control is paramount. It is so important because so many lives are lost every year to SUDEP(Sudden Unexpected Death in Epilepsy). However, I've also mentioned how awesome it would be if there was any cognitive ability or processing improvements with Carly. Well. Watch the video.

What you will see is Carly listening and doing. Something we have never witnessed before until today. No way anyone can tell me CBD Oil has not helped her brain make new connections to be able to process a simple task and complete it. And by the way, she loved doing it and expressed those feelings by smiling each time.

Smiling is what her mother and I were doing today. Everyday is a gift and tomorrow anything can change, but thank God for giving us this moment.

God Strong.















Thursday, May 28, 2015

CBD Update - Four Week Visit




Four Week Visit to Children's Hospital 

Levels and Side Effects: Current blood and urine levels looked great. There have been zero drug interactions at this point which can be seen in the analysis of the blood and urine. They are also looking for any other adverse things she might be experiencing.  The doctors said the most prevalent side effect thus far in patients has been diarrhea. Luckily Carly has not had any adverse reactions, knock on wood.

Dose: This visit Carly's dose was stepped up again. They are slowly raising the dose until she reaches her max level. At that point we will start looking into slowly taking away an AED depending if CBD seems to be working as it is now.

Myoclonic Jerks: When Carly started CBD Oil, the Myoclonic jerks went away totally. Currently they seem to creep back up when she is getting to the end of a two week visit. They upped her does and close to the two week mark before upping the dose again, the seizures tend to show back up. However, we are talking in the teens not the 200-300 range she was suffering pre-CBD. This is no real concern because we have days in which we see zero myoclonic jerks. So far, she hasn't suffered any Tonic Clonic seizures which are the nasty ones!

Alertness: Carly is still more alert and focusing on things better. She is tracking items easier as we move them in front of her face and with smoother pursuit.

Doctors have mentioned during discussion CBD Oil is not working for all patients in the study. This should come as no surprise. We all know it's not going to, nor is it promised, to continue to work even if it works early on in treatment. I've also heard from parents their child's seizures got worse before they got better.

Until next time...

God Strong.

Dustin

Sunday, May 17, 2015

Siblings are Watching





My first born will be 6 today and I couldn't be more proud of him and honored to be his daddy. I pray I can teach him from the mistakes I have made so he won't fall into the pitfalls. I seek the wisdom of our God so I will be able to teach him to live his life for the Lord, and if he strays, he will use the light of Christ to find his way back onto the path.

Proverbs 22:6
Train up a child in the way he should go; even when he is old he will not depart from it.

As a father with a special needs child it's very hard to make certain the typical children in the household are getting attention. I try my best to make sure Colton gets the due attention he needs and deserves. For most of his short life, it has been all about Carly for obvious reasons. Even when we are around friends and family everyone always asks about Carly. This doesn't matter if he is present or not. I fully understand it. I don't blame or want anyone to stop asking about her. As a dad, it's my job to make sure he understands that he is just as important than any of our children. I often times refer to us all as Team Chandler. I want him to feel apart of the team. There is always challenges. Every time our family leaves the house, we have to prepare around Carly. Food, diapers medicine etc. When we are out in public, we have to make frequent stops along the way to care for her, thus taking away from him and his other sister. In their eyes, it starts to appear its all about her, not the team. If you have other children in your family, don't forget to be there for them. It is very easy to let time slip by and lose that opportunity. Explain that being in your family is a "team" and everyone is created equal. The team needs to understand the life plan and guess who the Life Coach is, you. Tell them and show them you LOVE THEM and do it OFTEN....They are watching.


God Strong.



Thursday, May 14, 2015

CBD Update - Two Week Visit





Two Week Checkup:
Dr. Bebin said "since the first time I examined Carly, she seems more alert" at this visit.  This confirms what I've thought for the last two weeks. Her eyes are a lot calmer,under control and she is more alert, no question. The best way to describe about her eyes is that I see more of the brown in her eyes than white. Previously I would see more white than brown. This has been consistent for two weeks. She is looking more straight ahead than from the side. I think Carly is seeing more of the life in front of her than she ever has. I can't tell you how seeing more of her eye color makes such an emotional impact on me personally. It seems I can "connect" with her as daddy. Very powerful.

I asked her school today if they could tell any difference in Carly. Two assistants said they thought the same thing about her eyes and they mentioned her arms were not as active while feeding.

Seizures:
Carly has had minimal, if any, myoclonic jerks since taking CBD. Prior to taking CBD she was having upwards of 100-200 per day. Prior to CBD, I would see at least 4-5 jerks while feeding Carly at any given sitting. The last several times? Zero. CBD is controlling her seizures at this point. As we all know, this could change at any second.

Sleep:
Carly still has good nights and bad nights. Although she seems to have had more good nights falling asleep than bad ones. Again, her sleep patterns have never been consistent. I do not think CBD has had a positive or negative impact on her sleep at this time.

Overall Mood:
Carly has been very happy. She is not sluggish or "zonked out" during the day.

Drug Interactions:
None

Current AEDs:
Vimpat
Topamax
Valium
CBD

Monday, May 11, 2015

Drawing Carly to Stand




As Mother's Day got closer and closer I found myself trying to figure out what to do for Amy's card. The kids and I got her a little gift, nothing major, but we didn't have a card. If anyone knows Amy, she loves cards from the kids. Sometimes I think she would rather have a card then a gift. Well, I still had no card on Saturday. Colton and I had to go to the store so I figured I would grab one there. No dice. The Saturday before Mothers Day? Who was I kidding? So, plan B.

I told Colton he was going to make his mommy's card. He loved the idea and couldn't wait to do it. We stealthily walked to the basement and got out his crayons and construction paper. We folded the paper in the shape of a card and he began to write. Happy Mother's Day on the front and We Love You on the inside along with all three names listed in his writing. Colton wanted to draw a picture of him the two girls and his mommy.

In a kindergarten artistry kind of way, off he went. Mommy was drawn first, of course. Then he drew himself. As he drew the stick-type figures with round bodies, he explained every line he drew and why. He drew his younger sisters and finished the picture. Complete with green grass, flowers, and a big yellow sun.

After staring at his work in pride, he handed me the card, looked up and said, "Daddy, I drew Carly standing up."

I kissed him on the forehead and told him "One day, son, one day"

God Strong.


Wednesday, May 6, 2015

Phases of Maturity: A Special Needs Dad



Three Phases of a being a Special Needs Dad(Or Parent)...As I see it.

Phase One - Sorrow

Whether we want to admit it or not, we all have a little sadness when our child is diagnosed with a disorder or born "non-typical". During the time I was a cop, I considered myself to be pretty tough. I'm not the strongest guy on the planet, but I could hold my own. I had to for survival, literally. I've been in more struggles with suspects than I care to count and have been called just about every name in the book. Some of those names aren't even in the book they're so bad. On a side note, I wasn't very good at foot chases. I think I was only 50% successful when someone ran from me. God didn't bless me with speed, just saying.
Even as tough as I thought I was as a cop, nothing I've been trained to do or any of my experience on the street prepared me for when Carly was diagnosed. We knew she had problems at 8 weeks old because that was her first seizure. Even after her seizures began, I thought it would be something I can control. I'm a dad. A cop(at the time).  I can handle any situation. After all, that's what I've been trained to do for years. Of course I can fix it, that's what daddy's do. They fix things.
When Carly was diagnosed with CDKL5 on Feb. 22nd 2012 it was devastating. Crushing in fact. I already had a older son and everything was perfect. No way something is wrong with my daughter. Well, it was true. There is no cure for CDKL5. No treatments. Nothing. Heck, there are only approx. 1000 in the world.
The following weeks after getting the news and it sinking in I did what all real men do...I cried. In fact, I cried several different times. Listening to a song would make me cry. Just seeing things I thought Carly would never be able to do made me cry. I don't really know how long I grieved. But I did and it was necessary. It was almost cleansing to a point.
Grieving, I believe, is part of maturity of being a special needs father. None of us are too tough to cry. It's okay. Let it go. Your mind and soul will tell you when this phase is over and all dads are different.  I'm sure there are some dads that read this and say they didn't have a sad phase they went through. If so, they are way tougher than me.

Psalm 34:18
The Lord is near to the brokenhearted and saves the crushed in spirit.

**Important to note: If you are depressed please seek professional help.**

Phase Two - Acceptance

Acceptance is the hardest phase. Accepting is understanding the reality of a situation and knowing there is nothing you can do about it. As mentioned above, to us dad's, that's not a pill easily swallowed. For me, it was a little easier accepting my families situation. Why? Because I believe in Jesus Christ. I believe we have all of our children for a reason, typical or non-typical. I thought it was for the reason I had planned, but with Carly its obviously not the case. God tells us that our lives are not our own plan, it's His plan. If you don't know Jesus, introduce yourself.

Just remember every child on this planet has a purpose and contributes to our society no matter capabilities. Keep in mind, God doesn't create disabled souls. Once you accept this fact, you can begin to live your life.... once again.

Proverbs 19:21 - Many are the plans in a person's heart, but it is the LORD's purpose that prevails"


Phase Three - Life

After you have taken time to cry and accept what you have been given, only then can you start living again. Take this opportunity to look at yourself differently. Look at others in a different way. Look at life with love in your heart because Love is the only thing that will prevail. You have a purpose. You're the lucky father of a special needs child! That child is teaching you things you would have never learned and giving you knowledge you would have never sought after if it wasn't for them. What an honor!

For the record, I still cry, I still pray for God to give me the strength to accept what He has placed before me. I also pray God shows me the Love for all people no matter what walk of life they may have come from. Just because we complete a phase of maturity doesn't mean it won't be revisited many times throughout our lives. And don't think I haven't thought about losing Carly at a young age. Happens all the time. What comforts me? Carly has a free pass into Heaven to touch the face of God. To lay in the lap of the Lord and wait on her parents and siblings. Just like all children. How awesome is that?

There is HOPE and LIFE right around the corner waiting on you.

Jeremiah 29:11- "For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and hope."


God Strong.

Saturday, May 2, 2015

6 doses

It's been 6 low doses of CBD Oil for Carly since Wednesday. So far everything is steady. She seems to be having less Myoclonic jerks. "Jerks" occur when her entire brain is "shocked" at one time causing her to jump.  We are keeping track in a journal so it will be easier to tell in a couple of weeks or more if I am dreaming this or it's true.

Her teacher said she seemed more calm during her day at school(after three doses). Carly has a tendency to shake both hands really, really fast at the same time near her head. So for her teacher to mention this is kind of a big deal.

Sleep pattern is about the same though she seems to be falling to sleep better.

I wanted to get an update out quickly. I think we will begin to see changes in seizure pattern, if any, after two to four weeks. I hope to see cognitive improvement at some point too.

God Strong.