More issues, more meds...

L developed a sinus infection last week. We had a feeling that was coming. She got on antibiotics for that one. The day after that diagnosis, on Saturday, she broke out in her hives/rash thing that she gets whenever her body is under any kind of stress. She also had nausea so she had to go back on Zofran. It got worse so on Monday I took her in to the pediatrician. She started on Prednisone and some topical cream. We also talked about her incontinence issues again. They said give it a few weeks.

On Tuesday, I was talking to L about her incontinence issues. Apparently, they have been going on for a few months but she kept forgetting to tell me. They were not clearing up by Thursday of this week, so I took her back in, since it's been going on for so long. She's on some new meds for her bladder. She asks me every day when we're going to Atlanta to see her new Mitchondrial doctor. She has had really bad fatigue so she's taking lots of naps lately. She's had some muscle pains and requiring more fluids through all of this also.

Our other two, C and O, are suffering from allergies right now. Allergy medicine is going quickly in this house due to itchy eyes, yucky throats, and stuffy noses. 

I hope to get some pictures up of all the kids soon. We don't have much planned this weekend except for rest and relaxation. 

Trip to the dr. update

I took L into the ped. today because she was coughing all night long. She's now on prescription cough medicine and Pulmicort to help her cough and chest. She'll have to get antibiotics if it continues for another week.  She's pretty miserable but she's hanging in there. Hopefully it will clear up soon.

I also spoke to her ped. about her motility issues. She is increasing her Miralax to twice a day. We're hoping that helps move things along and get her stomach feeling better.

Hoping for some sleep for L because her body needs it so badly. Please pray she gets some relief from the coughing.

Update from the past few months....

Wow!! It's been so long since I've updated. These past few months have been times of health and then health crashes.

L has her good days and her bad days. Her Cyclic Vomiting Syndrome was confirmed again by her Neurologist. He has her on the Zofran when it hits, which is about once every 2-4 weeks. It's always at night. Usually, she will not eat for about 3 days after so she will drink Gatorade and Ensure. After about 3 days, she will slowly get back to eating regular food.  If it gets worse, she will have to go on daily medication.

A new symptom that has come up is hives/rash every time her body is under stress. It itches and is painful. It's splotchy and little bumps. Usually Benedryl or Hydroxyzine will clear it up.. Right now she's on Predisone because nothing was giving her relief. Sometimes we have to use the steroids but her pediatrician is trying not to put her on them too much. We aren't sure if they are hives or an autonomic rash. We have an appointment at Duke with a Ped. Dermatologist but we may be heading to Atlanta to see a Mitochondrial specialist there. We are still trying to get things set up and make decisions. Here is a picture of the rash...

L is has also been experiencing slow motility these past few months. We are trying a few things like Miralax but we aren't getting great results. The slow motility is causing a distended stomach and lots of other issues. I am going to talk with her pediatrician next time I take her in.  That may be tomorrow because she has developed an awful cough that is not getting better.

I will try to get better at updating. Life has gotten so busy but hopefully the summer will calm it down a bit.

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.