Merry Christmas, y'all

Last night, Jim and I had our first (non-relative) babysitter ever!! (Thanks, Tracey and Shane! We owe you.) We had a wonderful night out. We went to dinner and a holiday party. We were practically giddy with excitement. Jim and I spent a lot of time laughing, so I am sooo glad we got out.

Blissfully, we are staying home this Christmas. My parents are coming for a week, and we can't wait. Then Jim's family will come for a visit, too. This will be the second Christmas morning in our own home since we've been married, and now that Eve is 3 and has become interested in Santa it should be lots of fun. I plan on making tons of my grandmother's recipes for cookies and crispelli's and the like. I'll be making Archie's peanut crunch, and caramel corn and basically be gaining 50 pounds. Good times.

g-tube surgery scheduled...

for January 5th.

Happy (belated) Thanksgiving!

I know it's been a while since I've updated this. I've been traveling a lot for work. Because it's also the end of the semester, it makes for a very busy life. I'll start with some pictures and then fill you in on the happenings.
Here are two pictures from Thanksgiving. We went to Grammie and Papa's house. Uncle Scott was there, too. When we arrived, Josie turned into a crazy dog and ran laps around the house. She was literally bouncing off the furniture. It took until the next day for her to really calm down and chill out. Of course, she jumped right up on the couch as if she owned it. I should have gotten a picture because she usually managed to have a couch pillow under her head.

Eve got to wear her Thanksgiving hat that she made at school.

Here are some pictures of Eve and Josie snuggling at home. Can you believe these two? Really.

We are all doing fine. We put up our Christmas tree and I have started writing Christmas cards (slowly). I've got a ton of grading to do, and one more trip to take. I'll certainly be happy when the semester is over.

We went to the GI doc the day before Thanksgiving. Really nice guy. So, I have to schedule the feeding tube surgery for Eve. We're hoping for sometime in January. She'll have to stay in the Children's Hospital of Atlanta for a couple of days. She'll have what's called a G-tube. It will allow us to supplement her food so we can be sure she gets what she needs. It will also massively help at home and at school. She takes so long to eat (not because she's dilly dallying, but because it's a long process for her), that at school they have to move on to the next activity. At home it just takes forever. With the g-tube we can set a limit on dinnertime (say 20-30 minutes of eating) and if we think she needs more food, or if she only ate rice, we can supplement through the tube. The other major help will be with making sure she's hydrated - especially during an illness. That will help us keep her out of the ER. I'll let you know when we have this thing scheduled. I was actually supposed to call last week, but went out of town and when I returned, the office was closed. I left a message and should speak with someone on Monday.

glamour girl

All is well in Georgia. Jim never did get sick and I got much better after Monday. I'm gathering data for our visit to the GI doc on Wednesday. I'm curious about what he'll say and what tests he might order.

At the end of this past week I was traveling for business, and spent LOTS of time in the airport. I've realized that seeing typical little kids is very difficult for me. They are so precious and I just want to hug their little bodies, but it makes me so sad because it is a huge reminder of what Eve is (and we are) missing out on. Jim said something sweet when I told him this. He said that one day we will have a typical child and then we will get to experience both - being the parents of a SN child and the parents of a typical child. I guess I'm just ready to experience what most parents do.

Recently I joined facebook (under my maiden name because I don't want students to find me). I'm not sure how I feel about it. This whole "friending" thing is weird. The reason that I bring this up is because I've had some quick messages with people I haven't seen or spoken to in 10 years and they ask me how things are. How do I answer that? You can't just come out with, "Well, I am a professor now. Oh, and my daughter is terminally ill." Yet, it's such a big part of my life, that it seems to be worth mentioning soon. I don't really know what to say. I'm thinking of just posting a picture of Eve in her wheelchair so people will know some thing's up. But, then I wonder if no one will mention anything because they're afraid to. Oh well. Happy Thanksgiving.

yuck yuck

So it turns out that I got Eve's sickness. I ended up in the ER on Saturday puking and having back pain. I was worried it was kidney involvement. They didn't find anything and said it was probably just a virus (which would account for my back ache). I rested yesterday and woke up this morning feeling like I got hit with a truck. I had to cancel classes because I was too lightheaded to walk across campus and teach. I slept on the couch with Josie until about 2pm. I still don't feel right, but I can't tell if that's because I haven't had anything decent to eat in days or what. Ug.

Eve is better

Eve's doing great. She took it easy at home on Monday and has been doing just fine since then. She has had some noxious poo the past 2 days (like PB in color and texture, but NOT in smell). I'm sure you wanted to know that.

We've been taking pictures today for this year's Xmas card. Hopefully we'll get a winner or two. :)

What's the point of insurance?

The cost of a urinary tract infection while you are at a conference in Providence, RI? $700. Yeah, I'm not kidding. Apparently my insurance won't pay if a Physician's assistant sees me in the ER. Also, there's that lovely $400 decuctible. Too bad I couldn't stand the burning pain and constant discomfort for 2 more days. WTH?

ick

Last night I was at the University giving a review session. While I was gone, Eve threw up all over her bed. Poor Jim had to clean her and her bed up. He said she looked so miserable. She had seemed fine all day, but got really fussy around dinner time. When I left for the university, she started to cry and Jim said she was pretty crabby. She spit up a tablespoon right before bed and had a tough time going to sleep. A little while later, her little stomach emptied itself. He said he saw lots of her lunch (how long does food stay in your stomach anyhow?). I came home and helped make up the bed and get the laundry going. After some cuddle time, Eve went right to sleep and stayed asleep until 6:30am. Last night Jim felt a little ill, but we're not sure if having to smell puke and being in crisis mode set his stomach to churning. He is better today. Eve is also doing better. No fever and she is in a happy mood (laughing and playing). We are having her eat slowly and lightly, and we think it has passed. Poor kid. What worries me is that I'll be looking for a regression. It seems to be that she has noticible regressions when she gets a stomach bug. The last time she lost the ability to use a straw and lost a few words.

Trick or Treat!

Happy Halloween! Here's the costume that I made for Eve. I can't take credit for the idea - I googled wheelchair costumes for ideas. But I did make it myself. I used Foam board and felt and fake flowers. Eve's Halloween festivities included a parade and trick or treating at school yesterday. Today we went downtown (the W) for trick or treating at the different merchants. It was a zoo. Many many kids in costumes. Of course Eve was the cutest.

By today, Eve was over wearing the headband. She started crying when we put it on her. Oh, well. I just rested it on her headrest. Here's our friend Iggy looking on with concern. Isn't he cute?

Well, now we get to sort out all peanut containing candy (oh, darn - I guess we'll have to eat it), and find acceptable treats for Eve.

Perro Burrito

This weekend we went to a Fall Festival in Monroe. It was a little chilly when we weren't in the sun, so we kept taking Eve's jacket on and off. She had a good time. We walked around and checked out the local shops in Monroe. A beautiful day and a nice outing.

It's actually been a little chilly here in Georgia. Unbelievable, I know. Jim calls Josie his old lady dog because she loves nothing more than to curl up next to you on the couch. She snuggles in tight and has to be touching you. She also lets you wrap her up in a blanket and will stay that way. What a riot.

Here's our Burrito Dog. Or Perro Burrito.

I don't think I've ever posted Eve's rain gear. I came up with this myself after she got soaked one day. It takes a few minutes to get her to the bus and then loaded using the lift, so I trimmed a poncho to fit her. She looks like an orange ghost, no?

I'm calling the Dr. tomorrow because Eve's reflux has gotten worse. She's had tons of wet burps (silent reflux) and has also been spitting up tiny amounts. That has GOT to be uncomfortable. I wonder if it's time to up the meds. I don't want to wait to see the GI for this, since that appt is a month away.

Hope you had a nice weekend!

Visits to Drs. K

I just wanted to update everyone on some stuff. Tuesday was Eve's visit with Dr. Krewiecki and Dr. Kendall. We told Dr. Krewieki about our two concerns (that she's down to about 5-6 words and that she's scared to lay on her back). He checked her out and he seemed to feel positive and thinks Eve could regain some of her lost skills. I don't believe that for one minute. She has NEVER regained a lost skill. I prefer to be realistic. Otherwise he really didn't have anything to say.

Next was on to Dr. Kendall. She examined Eve and took a bunch of blood for testing. She wanted to know if we had any questions. We told her about our concerns and she nodded. I think it's just a part of the disease. She asked if we thought the meds were helping and we told her we've seen no improvement in Eve since beginning them. However, we can't be sure they aren't preventing her from backsliding more. Dr. K said that usually with kids that are as severely affected as Eve, those meds don't have dramatic effects. But we agreed to keep her on them for the time being. We were able to ask about buying B2 capsules instead of getting it in liquid form from the compounding pharmacy (7cents a dose compared to a dollar a dose). She said no problem. So that will save us lots of money.

We also talked about feeding tubes (g tubes). Meals are increasingly difficult with Eve. She has trouble drinking from a cup, cannot drink from a straw at all, and sometimes has trouble with her sippy cup. She is very fussy and is particular about what she eats in what order. That's not new, but the intensity is. We've had a few meals when she's only eaten bread and fruit. Or she only wants our food (even though it's exactly what's on her plate). That's pretty typical for any child, but it's compounded by the fact that she can't tell us what she wants and there are lots and lots of tears until we guess. Oh, and it takes her forever to eat. 45 minutes for dinner tonight. *So* Dr. K brought up the g tube before we even mentioned all this to her. She's putting it on our radar because she thinks Eve will definitely need one at some point. She said she supports getting a g tube because she tells parents that it is painful to be hungry/thirsty all the time. A g tube would have to go in if Eve was aspirating or failing to gain weight. However, she said there isn't a single GI who wouldn't put a g tube in her in her current condition. She gave us some names of pediatric GI's in case we wanted Eve evaluated. We do. Here's some of my thoughts:
If we get the g tube, it can be used for supplemental feeding. She can still eat orally, but we won't have to make dinner a battle. She can just eat fruit if she wants. I'd rather plan for a surgery than have it be an emergency situation, plus then our family can help us care for her post-surgery. Also, better for her to be healthy when having surgery than sick (in an urgent situation). I don't know, it just seems to be worth serious consideration. The good news is that one of the ped GI's that she recommended has an office in Athens! Yay. I'll call on Monday.

Other than that, we're doing okay. Eve is happy and bossy. She had a rough night on Thursday and we can't figure out why. Perhaps leg cramps or a headache. It was a rough night for all of us consequently. Nothing like holding a screaming child (and you don't know what's wrong with her) in the middle of the night to make you sad about your situation.
I'll try to post pictures soon.

sequencing approved!

I got a voicemail from Dr. Shoffner's office yesterday. They received the pre-approval from insurance and will begin the mtDNA sequencing! Yay. So, I assume that we can now start the 12 week countdown.

In the meantime I am working on getting together all of the information, forms, and signatures for Eve's Katie Beckett Waiver renewal. Apparently you need to reapply every year. It's an exhausting process in more ways than one. You have to dig out all your EOB's to figure out medical costs (they want a monthly breakdown for things like Dr visits, meds, equipment, therapy, etc). You have to get notes/letters from her specialists. You have to get the pediatrician to sign your paperwork. You have to print out bank statements. And it's emotionally hard, too. I am faced with the reality of her disease. Yesterday I was filling out one of the (many) forms and got stuck on prognosis. What do I put? death? So I left it blank. I'll ask Dr. Setia today (we're going for Eve's flu shot). I'm nervous with the current economy that we might get denied this waiver. It's been a lifesaver in the past year. I'll just try my best.

Happy October

I know it's been a while since I've posted, so here are some pictures of the last week or so. Josie is fitting right into our family. She is extremely tolerant of Eve and will certainly mature into a best friend. Eve also enjoys Jo, except when she gets her faced licked.


Jim is also happy to have gained a snuggle buddy. This is what I found the other night. So much for keeping Josie off the furniture. Have you met my husband, "Softie"?

I suppose it's hard to resist.

He also likes to snuggle with Eve. She likes it, too.


We bought Josie a backpack with the goal of putting weights in it to make her walks more tiring. She looks cute, no? We're also going to start phase 2 of dog training this month. Josie needs a little more help. Or maybe it's us that need the training. We're going to have one fine dog pretty soon.

Eve is currently crying in the other room. Jim is probably ready to cry. They had a tough weekend together. Jim gets (understandably) frustrated with Eve because she has little patience and is pretty clingy. It's made worse because to communicate displeasure she just cries and cries. Then she gets so worked up that she's lost it and you can't quickly calm her down. She pitches fits over everything. In some ways I can't blame her, because she can't tell us what she wants. But in other ways, she needs to understand that immediate gratification is not always possible. I don't want a selfish brat for a child. It's such a struggle for all of us.

Anyhow, yesterday Jim and Eve spent the afternoon together because I was out. Oh, boy. He needed space when I got home. Poor man. She was pretty hard on him. Today seems to be a better day. Well, it was a better day. She just woke up from her nap and is still groggy. I'm taking her out with me this afternoon to visit with Tracey and Iggy. Eve will be happy to see her friend Tracey again (as will I).

Not much else is going on. Eve got her haircut yesterday and was really really good. She didn't squinch up her shoulders or squint her eyes. She stayed still and smiled at the stylist. I was very proud. We have a Flu shot scheduled for Tuesday. Next trip to the neurologist and geneticist is in a week and a half. Oh, realized she can't say house any more. She pretty much just says owl and more and Da.

Eve is doing better

I just wanted to quickly post that Eve is feeling better. Her nose isn't running so much, and I think we'll avoid a return visit to the pediatrician...this week. :)
Hopefully the weekend will be great and she'll be happy and healthy.

Still sick

We ended up taking Eve to the pediatrician again on Saturday. Although her cough is gone, she still is congested and has a runny nose. She was totally cranky on Friday and Saturday and nothing would please her. We wanted to check for possible ear infections, etc. However, the regular pediatrician was not in the office, so we saw his partner. She didn't find any signs of infection and told us to monitor Eve and give her saline nose drops. I suspect we will be returning by the end of the week. Eve just can't shake colds the way a healthy person can. Fortunately, she's been in a better mood. Hopefully the regular doc will be in if we need to go back.

Eve's getting so big I just can't believe it. Oh, and let me track another symptom. This weekend we noticed that Eve was freaking out on her changing table. She looked scared and put her arms out in a startle reflex a couple of times. Once, we had to change her on the floor because she was crying so bad on the changing table. It reminds me of when she stopped being comfortable in the shopping cart and also of when she stopped being comfortable sitting up in the bathtub. She's afraid she will fall. I'm wondering if her sense of balance is off from congestion. Maybe it's also disease progression. She is sick after all. Perhaps this is a neurological regression. I'll have to mention it to the Docs. Eve's teacher noticed today that she cried during diaper changes. I'll fill her in on my suspicions.

Otherwise all else is well. We finally have some good sleeping weather this week and the temps are supposed to make it out of the 80's. Yay!

Mito Awareness Week

September 21-27 is Mitochondrial Disease Awareness week! You can learn more about mito by going to umdf.org or mitoaction.org.

Eve is sick again

Well, I took Eve back to the pediatrician yesterday. She has a nasty nasty cough and is wheezing. He gave us an antibiotic and 2 inhalers (a steriod called Qvar and albuteral). She's only had one dose of the antibiotic (albeit a bigger dose on the first day than the next 9) and 2 doses of her inhalers and she already has begun to sound better. She slept better last night and woke up at 6 instead of 5am. We'll see how that goes.

Josie's Surgery

So, yesterday JoJo had her lady parts taken out. I picked her up from the vet, and this is what I got:


I guess I'd be sad, too. She was still wonky from all the medicine and couldn't even hold her head up. She just slept and slept. Eve thought she looked pretty silly with her cone on. While they had Josie under anesthesia, they also operated on her foot. She had had this weird growth on her toe. The Doc wasn't sure if it was a piece of foreign matter (e.g., splinter) that the flesh grew around or even a tumor. They sent the tissue sample off to UGA to be analyzed. We'll wait to hear from them.



She's doing so much better today. We were able to remove the bandage from her foot and she's walking around very well. We even had to stop her from trying to jump up on us when we got home today. Unfortunately, now that she is mobile we have a problem. Eve is absolutely terrified of Josie with the cone on. I guess it was funny yesterday when Jo wasn't moving. But today Josie was walking around and you can't see her face, just this cone. It must look very strange to Eve and she was screaming and crying every time Josie got near her or moved around. I actually had to banish Jo to the hallway behind the baby gate until Jim came home from work. Eve wouldn't calm down. We're going to have to get her used to this because I think Jo will have to wear it for another week or so.

snuggle time

Here are some family snuggle time pictures.

Josie was trying to bite Jim's ear here, which Eve found hysterical.

Here's Josie getting yelled at.

And here's just a fun nearly naked picture. Isn't amazing how Eve is growing? She's really lengthening and losing her baby fat. She has a kid body and not a baby body.

Eve has been doing well at school. Last week she was out one day (she had gotten sick on the bus), and one of her classmates was asking for her all day. Apparently he fights over pushing her around in her wheelchair. There's another kid who's on her bus who always wants to push her, too. Sounds like she's popular. Yesterday Eve was the light helper and helped turn on and off the lights everytime they came and went from the classroom. I think she's calendar helper next. I love that she's being given jobs to do. Since she's so bossy, I just bet she loves being in charge of something.

Last week I had the most surreal experience. I was in Toys R us with Eve when a woman approached me and asked me if Eve had mito. Well, you could have knocked me over with a feather. Turns out she had caught sight of Eve's biopsy scar. She then introduced me to her family. One of her children has mito. She's a beautiful 6 year old who has the same type of mito as Eve but is night to Eve's day. This sweetie is walking and talking, but is dependent on tubes for feeding. I believe she also has seizures. Anyhow, we exchanged information and I am still amazed by the situation. I think when your kid is suffering from something so rare, you feel very alone. Usually if anyone asks what is wrong with Eve I don't bother to mention mito specifically, because it results in blank stares. So, to actually meet someone who not only knows what I am going through, but is on the same path...well, that is staggering. I feel very fortunate that I decided to go to Toys R us that day. What are the odds?

Family walks

We've been taking Eve and Josie on walks lately. Eve loves to hold the lease while she's in her wheelchair. I think it's really good for everyone. Josie can actually pull Eve if we don't reign her in.

One of the things we've been doing on weekends is driving over to Athens and walking around town. We have a specific track that we take and then we stop for coffee or a smoothie. Here we are on the outdoor patio of Starbucks. Josie has her "gentle leader" on so we have better control of her head and she can't pull on the leash. She get's so excited seeing all the people and occasional dogs. Eve is also having a ball being bossy and in charge of Josie.

She was laughing here because her feet were touching Josie.


Here's Josie and Eve riding in the car. Of course Eve is totally laughing at Josie.

Why I love Josie

The other night I was curled up on the couch watching TV. I saw a show that hit a nerve and had me thinking about Eve and I started to cry. Well, sob. Josie (who had been asleep on the floor) picked her head right up and looked at me. In about 2 seconds she jumped up on the couch and snuggled into my chest and tried to lick away my tears. She certainly broke the spell and made me feel better. I'm so glad we have her now.

We went on another walk around Athens this weekend. I took pictures that I will post later. But, I do want to mention something. Well, I don't want to, but for the sake of documentation, I will. This morning we were looking at family pictures and I realized that Eve can no longer say "Papa." We tried to get her to do it all day. So then, we started quizzing her on other names and we found out she can no longer say "Mama" either. She still can say "Da" for Daddy. I am truly saddened by this. This disease sucks.

Josie had to go to the hospital

So, Saturday night I spent a few hours in the doggie ER. Poor Josie. She must have eaten something that was bad for her. She had diarrhea all day Saturday, had an accident in her crate while we were out, and then from 8-8:35pm threw up 11 times. That's when we called the vet. I lost count at 15 pukes. At the end she was just puking foam and mucus. Yuck. Anyhow, they looked at her poo sample and didn't find any bugs. They Xrayed her and didn't find any blockages or foreign bodies. They gave her an anti-vomiting shot and some sub-cutaneous fluids and sent us home with a can of bland dog food and instructions to start her on water the next morning and then slowly increase to food. She's doing much much better now. Poor dumb dog. Probably ate some crazy weed or mushroom when no one was looking. But, she was a hit at the vet's cause she's so darn cute.

Oh, and Eve loves her wheelchair. LOVES it. We took a nice family walk downtown on Sunday. Josie did great and Eve really liked holding the leash every time we stopped (e.g., while Jim was in Starbucks).

Wheelchair!

So, Eve did end up having a sinus infection. The ped put her on antibiotics, and she is doing much much better. Her appetite is back and she is *less* cranky. She also slept through the past 2 nights. I told him we were giving her a decongestant and he said it doesn't work. Instead he suggested a local decongestant - nose drops. Either the medicated or saline. I got the medicated ones and it really helped her breathe the last 2 nights. Tonight she didn't need it.

But the real news is that the wheelchair came!!! It's totally cute and totally tiny. It has her name on the back of the seat and also on the backpack that come with it. The front wheels (which remind me of Rollerblade wheels) light up when it rolls. Totally cute. Here are some pictures.

Her wheelchair came with a clear plastic tray (you can see it on the glider). It's great because she can use it to play or color.


She really likes the chair and even asked to get back in it after dinner. :) We'll take it around town this weekend.

Eve has a cold

This post is almost more for me than you - I want to keep track of Eve's cold. On Tuesday, August 5th, Eve started coughing. She had a cough and some congestion for over a week (but not a runny nose). On Thursday, 8/14, Dr. S had her start Albuterol inhaler and sent us for the chest Xray. He also started her on Miralax for constipation and Prevacid because the Zantac wasn't totally effective. We heard nothing about the xray, so I suppose it was clear. Friday (8/15) morning her nose started running. Ever since then it has been full blown cold. Total snot factory. Waking up in the middle of the night/early morning. Coughing. Loss of appetite (but still wants liquids). No fever. Fussy fussy fussy. I am taking her to the Dr. again this afternoon. I've been giving her a decongestant, but it really hasn't helped. I'm not sure what he can do - maybe she needs an antibiotic? Ug.

Eve's well visit

Eve had her 3 year well-visit on Thursday. I updated Dr. S on the latest with Eve (seeing Dr. K, etc.) and mentioned that the Zantac wasn't totally effective at controlling the reflux - she still has wet sounding burps. He prescribed prevacid and gave us some samples while the insurance companies argue about paying for it. He listened to her chest and she was wheezing pretty good. She's had a cough for over a week now. He ordered a chest xray and thinks she either aspirated food or reflux. He told us to give her albutural (her inhaler) 4x a day. Oh, she weighs 27lbs 5 oz and is 34 1/2 inches tall with a head circum of 19 inches. He asked me what Dr. Krawiecki told us we could expect of the disease progression in the next year. I explained that dr. K said we don't know what to expect. So Dr. S wants to see her in 6 months (rather than 12) and he wants her to have a flu shot. He gave us a prednisone Rx in case the cough gets worse. We did the chest Xray on Friday morning, but I am assuming all is well since I didn't hear anything from the Dr.'s office. She's been in a wicked bad mood all weekend. Very very fussy. Her nose has started running. I'm not sure how much of her crying/whining is due to feeling sick and how much is due to brattiness. As I told Dave, perhaps the sickness is exacerbating the brattiness. Which I guess makes her a sick, exasperating, brat. :) Ug. It's been a stressfull weekend. Can't wait for school tomorrow. Oh, btw, classes start at UGA tomorrow. Can't believe the fall semester is here already.

More OCNJ pictures...now and then

Here's a great picture of Eve and I that I stole from my friend's blog. Eve looks so snuggly cute.

Here are some good old days pictures. This is from either 1982 or 1983. Dave has the green shirt on, I'm next to him in white. My mom is standing up and my dad is rocking the mustache and tube socks.

Here's Tina and I in 82. There's a picture of Tina in the previous OC post.

Here's Dave and I on a ride in 86. You can compare to the previously posted picture of Dave and me (and kids) on a ride in 2008.

Fun times.

Oh! Eve's wheelchair is in. We have an appointment a week from tomorrow for it to be fitted and delivered. Yay!