"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:

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"!

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1 comment:

  1. I don't know how I missed this post earlier...
    Anyway, I love that Luella is playing the piano! That is so cool!...and doing so well with her potty training!
    Great update!
    Also, love the superhero gear :)