"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, April 11, 2013

Catching up....

Lots of things to report! I haven't taken the time to write since Jim was gone for work and we just had a big ice storm with snow AND kids home from school! :-)

Luella has had a couple of seizures in the last week. One on Saturday morning - Jim was gone then but the other kids were great helpers and Luella came through it pretty well. She also had a seizure last night (Wed) after supper. Jim was home but wasn't nearby and once again the kids were great helpers. While two seizures in a week's time is more than we'd like for Luella, we also want to remember that so many little ones are dealing with SO much more. When you keep Luella in your prayers, please pray for little Regan (she has Dravet also). She's had over 300 tonic clonic (grand mal) seizures in the last week! It's just heartbreaking!

On a positive note, Luella has really accomplished some "big girl" things this past week! When Jim left for work last week I decided it was time to get busy potty training Luella. She will be 3 1/2 this month and Ashlyn was potty trained closer to 2 1/2. I felt that I didn't want to put too much pressure/stress on her before now and was just going to let her tell us when she was ready. I decided I was ready! I thought she could do it too so on Thursday we went to school in the morning then after her nap I put her in panties and showed her the "Potty Train" chart I made for her. She was very excited! She's been in panties since (except nap and bedtime) and only had 4 accidents - one was during her seizure on Saturday... another thing we'll deal with now. But she has done GREAT!! She is SO proud of herself! She couldn't wait to tell daddy when he got home and show him her sticker chart. (I kept our endeavor a secret from him while he was gone.) Jim says there is no problem I can't solve with crafting! :-) It feels weird to not be changing diapers during the day!! This is the first time in 9+ years we haven't had someone in diapers in this house!! I guess technically Luella is still wearing diapers when she sleeps, but not having to change diapers all day is awesome!! There was a time when we had THREE in diapers here!!

Another "big girl" thing is being able to swallow a pill! We wanted to try time-released melatonin for Luella to see if it would help her sleep better through the night. We've been dealing with some rough nights lately... well, mostly daddy has been dealing with them. Jim is great and lets me sleep! Mostly because I'm a softy and can't let her fuss or cry! Last night she was up for five hours straight!! Anyway, the melatonin is little tablet and she is able to swallow it just fine! We had a couple nights that it was pulverized, but now she does great! Sadly, it isn't helping her sleep. :-( But since she took that just fine we tried giving her one of her other meds as a whole capsule tonight and she got it right down!! This will make giving her meds SO much faster/easier!!

Luella was scheduled for her neuropsych evaluation today but since we got so much ice and then snow we had to reschedule it for a couple weeks from now. While it's been sad so see so many trees going down in our town, the snow was perfect for making a snowman and the kids had fun collecting icicles today! Luella was able to be out for about an hour and a half and had so much fun playing in the snow!! And NO seizure!

Please continue to pray for Luella  - pray for better sleep, for a successful neuropsych eval in a couple weeks and  for things to go smoothly while Jim travels again later this month. Please remember to say an extra prayer for little Regan too! Thanks everyone!!

1 comment:

  1. Wow! What awesome accomplishments for Luella! I hope some day we can get those two things going for Ben :)
    Nine years is a long time :) You deserve this Heather!