"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Wednesday, April 30, 2014

All About Luella

It's been awhile since I wrote an update strictly about Luella. There's been so much going on with the Medical Marijuana legislation here in MN. I will do an update on that in a separate post; that way you can read what interests you!

Luella has been doing fairly well since my last post about her on March 23rd. She did have one more seizure in March and three for the month of April. The seizure on March 30th was another sleeping seizure - this time during her nap and again required three doses of midazolam to stop. :-( Just one week later she had a seizure very early in the morning (5am) that also required three doses to stop. She ended up vomiting a couple times later that morning so I wasn't sure if it was a stomach bug or what we were dealing with. She went on to eat little bits throughout the day and then was completely fine. Having two sleeping seizures that were both difficult to stop in just a week's time was worrisome. I wasn't sure what was happening. I was hoping that wasn't going to be our new "normal". As Dravet kids get older nocturnal seizures tend to become more common. Thankfully things turned around and her last two seizures have actually been while awake and have both stopped on their own without any rescue meds! Unfortunately though both of those seizures were while she was playing and having fun outside. It is so hard to hear her crying that she wants to "go play" but she isn't even able to stand up on her own after the seizure. It's also hard to have our other kids disappointed to see that Luella had another seizure and then wonder if we need to leave the park now. Seizures are so frustrating and unfair!

While we did have a couple longer seizure-free runs, it appears as if we are back to our usual once-a-week routine again. I know many families who would love to say their child only has a seizure a week so we do feel fortunate that Luella is doing so well in that regard. Seizures still somewhat rule our house and it's hard just not knowing "when" one will happen and how quickly it'll stop... or not...

Luella reached a BIG milestone at the end of March when she started wearing panties to bed!! She had still been wearing a pull-up or diaper at bedtime. We had transitioned to underwear at nap-time quite awhile ago but she still hadn't been able to keep dry at night-time. Finally in mid-March she started waking up dry so we said if she did it for a week we would try panties. She was so excited to tell us every morning "I dry!" We made the switch and she has done SO well!! She had one tiny accident once and then of course it tends to happen when she seizes but otherwise has done terrific!! We are so proud of her! This is the first time in about 10 1/2 years that I am no longer buying diapers for someone in our house!! :-)

Luella is GROWING! She is getting so tall! On April 21st Luella was officially 4 1/2 years old. With two of our other kids having birthdays recently I marked their heights on their growth charts and decided to see how Luella was growing too. In just 6 months time Luella has grown over two inches!! No wonder all her clothes are getting too small! Many of the hand-me-downs that she is wearing now were things that Ashlyn wore in Kindergarten and 1st grade!! I don't think she is getting her height from me! :-) With the height has come weight... she weighs just over 45 pounds! It's getting to the point that I won't be able to carry her easily much longer. :-( That comes with some "issues" also.... what do I do if she has a seizure and we are out somewhere? Find some strong guy to help me get her to the car? We are working on getting a medical stroller to take with us "just in case" since she has outgrown a regular stroller. We hope to have that in time for summer.

Luella is done with her School Readiness class and ECFE for the school year! Hard to believe how fast those 12 weeks of school flew by!! Luella did great and it was such an answer to prayers that she didn't have a seizure at all during her time at school! Nothing but FUN! She still has a few sessions of Speech, OT and DAPE left and then all the kids will be done with school! YAY Summer!

I'll give you a heads up that June 23rd has been named as the first annual international Dravet Syndrome Awareness Day! I have a super SWEET fundraising campaign that I will be launching on May 12th to help raise money for Dravet syndrome research! Be watching for more information.

For more info on DSA Day:
http://www.dravetfoundation.org/archives/events/dravet-syndrome-awareness-day

We ask for your continued prayers that God would protect Luella's body and brain from the seizures that she continues to have and also that we would be led to the right treatment for her! Thank you!

I'll leave you with some pictures and videos of Luella!


Our Dravet Superhero!! She's cute... She's tough...
Created with flickr slideshow.




Luella has really taken to playing the piano. She loves to sit and try to figure out familiar tunes... and she does it pretty well too! Here is a sampling of some of her latest "work"!



If you get email updates, you'll need to view the blog on the website to see the pictures and videos. Just click the blog title at the top to take you there.

All About Medical Marijuana

Once the Minnesota Legislature reconvened after Easter, the Medical Marijuana bill in the Senate has made some real progress!! Before the break the Health, Human Services and Housing Committee heard the bill. They met up again last Friday to vote and they passed the bill! Since then it has also passed the State and Local Government Committee and the Rules and Administration Committee. Today it passed the Judiciary Committee after over five hours of testimonies and debate! Now it is on to the Finance Committee and then possibly on to a Senate vote!

The bill on the House side is stalled at the moment. I'm not sure what will happen with that bill or what impact the fact that it is stalled will have on the Senate bill. I'm hoping to get more clarification on that soon.

If you are a Minnesota resident, PLEASE call and email your legislators and ask them to support the medical marijuana legislation. Tell them you know a precious little girl who could benefit! Find out how to contact your legislators here: http://www.leg.state.mn.us/leg/faq/faqtoc.aspx?id=47

Here are a couple news articles just out today:

http://www.startribune.com/politics/statelocal/257425621.html

http://minnesota.cbslocal.com/2014/04/30/medical-pot-clears-another-senate-panel/

Please pray that the lawmakers in Minnesota will do the right thing!!

Tuesday, April 8, 2014

Minnesotans, we need your help now!

***Please read the update at the bottom - added 4-9-14.***

Why We Need Your Help Now
We received some very encouraging news today regarding the Medical Marijuana bill in Minnesota!! After not hearing much for awhile, today it was announced that the bill is going to be added as an amendment to a current health policy bill that is expected to be heard on the house floor tomorrow!!!! The amendment basically adds the text of Rep. Melin's medical marijuana bill to the more broad health policy bill. It is likely that the House will vote on this tomorrow (Wednesday), sometime after noon.

A few things have changed from the original bill... "marijuana" is now referred to as "cannabis", smoking and home cultivation have been removed as well as a few other minor things. This is great and exciting news!! The most common concerns some had with the original bill were allowing patients to smoke the marijuana (of course Luella would not) and allowing patients to grow their own if they lived too far from a dispensary. We are hopeful that with these changes and by adding it to an existing health policy bill we will now see some widespread support for it!!

Please Do This Now 
Minnesota residents, please call and email your representative now and ask him or her to vote “yes” on H2402A53 and then ask your friends and family in Minnesota to do so too.

Find your representative here:
http://www.gis.leg.mn/php/house.php?Report=HouseCTY&District=
Click on their name to find their email address and phone number.

The Marijuana Policy Project has already written an email that you can send to your representative by filling out a form. It will even figure out who your rep is for you.... https://secure2.convio.net/mpp/site/Advocacy?pagename=homepage&page=UserAction&id=2515

The bill that Rep. Garofalo intends to amend is HF 2402. The Amendment is 2402A53. http://www.house.leg.state.mn.us/cco/amendmentall.asp

UPDATE - added April 9, 2014
Unfortunately the hearing for this bill has been postponed now until after Easter... however, that gives you all more time to contact your representatives to ask for their support.

The Senate medical marijuana bill has been scheduled for a hearing in the Committee on Health, Human Services, and Housing tomorrow morning (April 10th at 8:30am). If you have a Senator on this committee - http://www.senate.leg.state.mn.us/committees/committee_bio.php?cmte_id=3059&ls=88 - please ask them to support SF 1641.