Rough Week

This week has been pretty rough.  L has had stomach pain since Monday and has been taking Zofran since then. Hoping this passes for her soon as she doesn't have her spunk right now and is feeling pretty yucky.

Also this week O was diagnosed with Dyspraxia. He has struggled with writing, reading, speech, etc. his whole life and now we know one of the reasons.  He has begun tutoring and OT with a wonderful therapist. So now he's receiving that and PT.  His therapist said he's going to have to always work extra hard but he can learn how to cope with the Dyspraxia. 

I have been preparing lesson plans for this coming year. I can't believe we start in 2 weeks.This summer has flown by. I am excited about the cooler weather coming so the kids can get outside more. Right now most outside time is spent getting wet with the hose and on the Slip-N-Slide. I am going to miss these lazy summer days though.

Please pray for L and her stomach if you get a chance. She's just miserable with this pain and not being able to eat.  Thanks so much for all your prayers.

Dr's appointmens, Pain, and Life

It's been such a busy summer. L is doing OT, C is finishing softball, O is in PT, and all are doing summer camp at grandparents house, swimming lessons, and some other fun mixed in.

L saw her neurologist on Monday for her 6 month appointment. She's staying stable on her medicine for her seizures. I asked her neuro about her leg pain, since that seems to be increasing. Her lab reports showed her lactic acid being high, which is part of her disease. He said that if we increase her CoQ10, that will help her get rid of the lactic acid, in turn, hopefully helping her leg pain.  So she's on that twice a day now.  We're noticing that she does not want to eat when she's in pain. So we're doing protein shakes and things she can drink in order to help her on those days.

We have enjoyed some fun things so far this summer. C's softball team finished their tournament in 2nd place. We are so proud of them. L and C went to Japanese camp at their grandparents and O went to reading camp there. They had a great time and learned a lot. We took a day trip to the beach 4th of July weekend which was a blast. O is taking swimming lessons and learning a lot.  We're inside quite a bit due to some extensive car repairs on my car and also the heat.  It's been a great summer so far.

The rest of the summer will be full of VBS at the kids grandparents house, swimming, fun with friends, and getting ready to start the new school year. I've been busy setting up our school room. I hope to get lesson plans done next week and finish getting their curriculum. I am excited about this next year. I can't believe we'll have a 3rd, 5th, and 7th grader.

I'll try and put some photos up soon of our summer adventures. They are on my phone so I'll have to figure out how to get them on here.

Lab Results

We just got L's lab results from her Mito dr. They are interesting. Her lactate is slightly elevated and her CoQ10 enzyme level is low. They are starting her on CoQ10 enzymes to hopefully help her with energy and to feel better. I'm glad to have her results back and now we know what the next step is. These results are from when she was pretty much over all of her sickness and the dr. does want these labs repeated when she gets sick again.

Eye doctor appointment..

Today was the first time L and O have ever seen an eye doctor. O has perfect vision at 20/15. He did excellent with everything there. L was a bit different. Her vision is fine the dr. said. She said one of L's pupils is peaked at the top.  She also has a droopy eyelid on her left eye, which she said is most likely the Mitochondrial Disease causing that. L had a fit about the drops so that was a struggle but we got them in.  They want to see her once a year due to her pupil being peaked at the top because that can be an early sign of some iris problems. I had suspected the droopy eyelid but it was nice to confirm I was seeing the right thing. She's also had some hip pain in the past few days so we may have to go back to the pediatrician for that soon. I am pleasantly surprised none of the kids need glasses.

Good days and bad days...

Good energy day

Bad energy day.

All of us have good days and bad days. It seems L's are more pronounced. When she has a good day, the next day is 99% going to be a bad day. Her body is only able to handle the energy of a good day for that day. It seems to take her a while to make up for that day, which is usually the next day and sometimes more.We're noticing a pattern now. We are going to work with dd10's OT on teaching her how to spread out her energy so that she has more good days and less bad days. On the good days, she eats great.  On the bad days, she eats very lightly and usually very bland food such as toast. We hope the good days come more often around here.

Welcome!!

Welcome to my little corner of the world.  I hope to offer encouragement to families with chronic-illness by sharing our every-day life. I have 3 children ages C-11, L-10, and O-8.  Our 10 year old was diagnosed with Mitochondrial Disease two weeks ago.  To find out more about our story, please click on the "Our Holland" button in the side-bar.