"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

Thursday, September 29, 2011


God has blessed us by giving us 6+ weeks without a seizure!! The last two seizures in mid-August were so mild we were hardly sure she even had a seizure. And we are almost two months now since her last major seizure on August 1st! God is definitely answering our prayers!

The drugs are really working well. A combination of Depakote and Stiripentol is doing wonders! The Stiripentol is imported from Europe and is not FDA approved. We are STILL working with insurance to try to get it covered. Please pray that they will see the need for this important drug and pay for it for us! We have also been able to wean Luella off of Keppra. We felt this drug wasn't really helping  and Luella had some behavioral side effects so we are glad to be done with that as of September 22.

As far as the side effects of the Stiripentol... we are still dealing with Luella's lack of appetite and tiredness. I think the crankiness has improved some (maybe from getting off the Keppra). It's hard to see Luella turn down her favorite food of macaroni and cheese. She won't even eat a cookie! We've read that it can take some time for the side effects to lessen. I hate to give up a drug that works so well at controlling her seizures so we pray these side effects will go away. In the meantime I have some PediSure on hand for those days when she just won't eat.

Luella's iron levels have increased. Her iron levels were lower for awhile and I believe taking the iron supplement has helped. I'm not sure if the low iron caused the night-time jerking and twitching, but we have seen an improvement there as well and she is sleeping better.

We have also been blessed with a couple of volunteers to help watch Luella on the days I go to ECFE with Ryker. We can't possibly thank you ladies enough!! We could still use a "regular" to help on Tuesdays when I have Bible study. What we have been doing is that Jim works from home on those mornings so he is here and available in case Luella would have problems. I think Luella really enjoys her one-on-one play time! Jim hears lots of giggles from Luella on those days. If you are interested in watching Luella, please let me know.

For all of my Coffee Break (Bible study) friends, I want to thank you for all the prayers. I'm finding it  really hard to make it through a Bible study without crying these past two weeks. I'm not sure why... I think I just feel all the prayers and love poured out for Luella and our family and I just have a hard  time containing my emotions. The first couple weeks after Luella's diagnosis I had a really hard time talking to anyone. I AM doing better despite what you have seen. We have so much to be thankful for.

Luella had her initial evaluation done by the Early Intervention Teacher at the school. Luella scored at or above for her age in every area. She also had a hearing screen done yesterday and passed that as well. We are so thankful for the school's involvement and their willingness to help monitor Luella. We pray that Luella will be spared the regression and developmental delays that so many kids with Dravet experience!

We are so thankful for all of your prayers. We ask for your continued prayers and prayers specifically for insurance coverage and for the Stiripentol side effects to go away. Thank you so much!

Friday, September 9, 2011

Wanted: Babysitter

Next week I will be taking Ryker to ECFE at the school again. It's one day a week - Thursdays from 8:45 - 10:15. They do have sibling care available but we are not going to be taking Luella there. We are still nervous about leaving Luella with someone for two reasons:

1. Luella’s seizures are usually subtle. So in a roomful of kids it’d be easy for someone to not notice right away that she’s having a seizure.

2. With lots of other kids there Luella could easily get exposed to something. Kids with Dravet Syndrome tend to have somewhat weakened immune systems. On top of this any type of illness has a good chance of causing a seizure, so we are trying to avoid getting her exposed unnecessarily.

Also, in October my women's Bible Study starts again. That will be on Tuesdays from 9:30 - 11:00. Ryker will go with me because they have a children's program too that he goes to.

What we are looking for is a volunteer to watch Luella at our home while Jim is here working from home on the days I'm gone with Ryker. We feel more comfortable with someone watching Luella one-on-one and also Jim is here if something were to happen.

If you or someone you know would want to help us out, please let me know. You do not have to commit to every week, even once a month or whatever you can would be a great help to us. Luella has really never been away from either Jim or I and since I stay at home with the kids these two chances to get out and do something for Ryker and myself really help me stay sane!! :-)

Please call or email me if you can help - heather.m.johnson@gmail.com.

Saturday, September 3, 2011

Holter Monitor and a Rough Night

Luella got her Holter monitor Friday morning. It was great because we were able to get it right here in town. She didn't mind the five patches on her chest too much. I had her wear a onesie so she couldn't get under her shirt to pull them off. She didn't appear to be bothered by it much all day. We just clipped the little box on the back of her pants during the day. At bedtime I found a pair of pants with a cargo pocket that was the perfect size to hold the box!

About 8:45 I was getting Luella ready for bed. She was laying on the changing table while I hooked her up to the pulse ox monitor and she was pointing in her mouth and saying something I couldn't understand. Within a minute she gagged and started throwing up. Now lately Luella hasn't had much of an appetite - she usually just picks at her food. This is a side effect of the Stiripentol that we hope will get better as she gets more used to the medicine. Well, last night I made BBQs and Luella ate A LOT!! So, unfortunately she had a lot to vomit!! Luckily a towel caught the mess and her patches and clothes stayed clean.

She was asleep by 9:30 but woke up again at 10:00 crying and vomited a little more. She woke up a few more times and coughed a little bit but didn't have anything more to vomit.

We aren't really sure why she got sick - maybe because she ate SO MUCH at supper, it could be a side effect of the Carnitine she started Thursday night (it can cause an upset stomache and vomiting), or maybe she has the stomache flu - which would be strange since nobody else has it and she really doesn't get out much to be exposed.

This morning she woke up around 7:30 and I let her eat a few saltine crackers and when she saw the kids eating cereal she asked for some Cheerios which she ate dry. I was able to give her her daily medicine (minus the Carnitine just in case) and everything has stayed down! I was a little concerned last night when she was sick that she might have vomited her seizure meds. Jim assured me that they are absorbed fairly quickly and it had been about 3 hours since she had her meds at supper.

Luella does have a runny nose now today and has been sleeping quite a bit so maybe she does have a bug of some sort. I guess this will be the test for how well her seizure meds are working. Luella usually has a seizure whenever she is sick. So please pray that she can get over whatever she has now and not have a seizure!!

So not a great 24 hours to wear a Holter monitor... we'll have to see if the doctor thinks it would be better for Luella to try it again sometime when she is feeling more "normal". I know when she was sick last night her heart rate was over 150 for a little bit.
Luella didn't seemed to be bothered much by wearing the Holter monitor. The recording device was clipped to the back of her pants.

Ready for bed! I found a pair of pants with a cargo pocket on the side that the box fit into perfectly.

Just thought I'd throw in this little video of Luella playing with LEGOs yesterday. She LOVES Legos and not just the big Quatro or Duplo blocks, but the teeny tiny normal Legos! She is able to put them together all on her own.  She made the creation in this video all on her own! We are finding ourselves taking more videos of Luella lately. We are so proud of where she is developmentally. I can hardly stand the thought that at some point she may start to regress and struggle with things... I'm taking in every little thing now!