blech

Eve came down with a stomach bug last night. She was up twice and emptied her stomach. Poor kid. At least it was quick. She stayed home from school today and we focused on fluids and cup of soup and jello. She's doing much better and will go to school tomorrow.

Of course I am worried we will see regressions, but only time will tell.

happy Thanksgiving!

Oma and Pop came to our house for Thanksgiving. It was a lovely visit. My first time hosting for turkey day. Eve had a blast. Here she is with Oma:


Oma and Pop gave Eve an early Christmas present. It's a winter cape and it's fabulous!!!!!! Winter coats are such a difficult endeavor for many reasons. First, they are hard to fit her. Her arms are so tight, you need to get a coat that is easy to put on. Second, the wheelchair makes it difficult. Once you get her strapped in, she really needs to get into the cold air or she'll overheat sitting in the house waiting for the bus with her coat on. So, this cape is perfect! I put on a fleece jacket (that she can wear in the house without getting too warm), and when the bus comes, I just drape the cape over her and tuck it around her back. It's fleece lined, super warm, and covers her legs. It's also waterproof which is great for snow and rain.

There are even two slits for her to stick her hands through. Isn't this cool?? Thanks Oma and Pop!!

You know, it's the little things that make life so difficult when dealing with a special needs child. The big things are hard, too, but the things we take for granted can be so annoying - like having warm outerwear that actually works for your child.

Fall 2010

I've been so busy lately, that I haven't been able to give the blog the attention it needs.
Let me tell you about Halloween. We were invited to go trick or treating with my colleagues' families. A group picture was taken, but I haven't seen a copy. I was super nervous about how Eve would do. Would she freak out? Would she hate it? How hard would it be on us lifting her in and out of her stroller. I was so worried I made myself feel a little sick. For no reason. She loved it. It took her about 4 houses to get the idea. At the first house, she cried when we left. It was like, "Why are we leaving?? They have candy here!!!" But after a while she was squealing with delight as we approached each house. It was hard work for Jim, lifting her in and out of the stroller. But she had a wonderful time.

All else is well. Eve has a stuffy nose that she can't seem to shake and has been waking up crying a lot more in the middle of the night. Motrin does the trick. I've begun to wonder if she is suffering from the same horrible leg cramps I got as a child. I'll have to ask my parents how old I was when I started getting them. I used to get them mostly at night. But other than that things are fine. I have her parent-teacher conference tomorrow.

Silly Oma!

My parents came for a visit this past weekend. It was wonderful. They left on Monday after Eve went to school.
Anyhow, Monday morning I was getting Eve dressed for school and apparently I put her Converse sneakers on the wrong feet. When she got to school her aid noticed and asked her who dressed her.
"Did mommy dress you this morning?" "No."
"Did mommy put your sneakers on?" "No."
"Did daddy dress you?" "No."
"Did daddy put your sneakers on?" "No."
"Did Oma dress you?" "Yes."
"Did Oma put your sneakers on?" "Yes." Then she laughed.

Little stinker!!!

School Picture

Here's this year's school picture. Isn't she cute??

Uncle Scott

This past weekend, Uncle Scott came for a visit. The weekend events included freestyle sightseeing in VT, Thai food, and a visit to a farm to pet baby goats.



Josie was especially excited about Uncle Scott's visit. I'm not sure she left his side all weekend!

Happy

We ordered a Halloween costume for Eve. It came today and we tried it on her. As you will see, the costume is a hit.

Sad

Three days ago another member of the mito community died. He was an adorable little boy a year younger than Eve. This news has rocked me. It seemed to come out of the blue (in my perspective). I think I have been living in world of near denial. But I think that's how I manage to survive. If I constantly thought about the awful nature of this disease, I just couldn't function. So as a matter of survival, I focus on the day to day stuff and try not to think about the "what ifs" and the reality of what will be. But then something like this happens and it's like a bucket of cold water in the face. I think what really got me was that this little boy was able to walk and talk. I always figure Eve is so severely affected because she is nonverbal and non-ambulatory, but I have to count my blessings and realize that she is relatively healthy. In fact she came down with a cold a week ago, and has already managed to shake it. She hasn't been in the hospital in a year and a half. But that won't always be the case. I *ache* for the family of this little boy. And I am so scared of what will happen when I am in their shoes.

sleuthing

We got Eve a Medic Alert bracelet. I've always been kind of paranoid that I'd get into a car accident while driving with her and be unable to explain to the paramedics her condition. So, her bracelet is on her 24/7 and reads: mitochondrial disease; non verbal; allerg to peanuts.
When the hospital calls the number, they can get access to more information including her current meds/dosage. We also chose the basic design, so it would be obvious in an emergency. Bonus: the bracelet comes in a pink decal!


I did a little deducing and may have figured out the source of Eve's UTI's. I've been using a diaper cream recommended by the pediatrician that has 3 ingredients I mix myself in a little Tupperware tub. Well, I had noticed (and ignored) a connection between using the diaper cream and then smelling funky pee a day or so later. I brushed it off because why would a cream make her pee smell? Her pee started smelling again and a lightbulb the size of the sun turned on in my brain. What if the tub had some contamination!! What if I changed a dirty diaper, stuck a finger in to get a glob of cream, and inadvertently contaminated the tub? So I called the pediatric surgeon to see if he still wanted to do the VCUG. He said that we should cancel it, but if she gets smelly pee/UTI again that we should schedule it again (which would indicate that the frequent UTI's weren't due to the cream, but instead might be kidney reflux). In the meantime, Eve's pediatrician put her on a course of antibiotics. So we are starting with a clean slate. I've tossed the tub of cream and will use straight Desitin from a tube if necessary.

Eve also had her 5 year well visit. She is 34.5 lbs and 39 inches tall. All is well. School is going well for both Eve and I. I have 5 classes this semester (!), so I am a busy girl. Eve has settled in quite nicely (or so it seems) in her class. She has stayed back in Pre-K this year. Her teacher is a Special Ed teacher and we thought she would really benefit from another year in that classroom, reinforcing concepts she learned last year. It's sad that most of her class from last year are in Kindergarten this year, but she will make new friends and visit with the old ones in the hallway. Not to mention, this is such a small community that we *literally* cannot go anywhere without someone saying, "There's Evie!" Usually it's kids from school (that I don't always know). I think Eve is pretty recognizable (thanks in large part to her wheelchair).

Hope you are having a nice weekend. Jim is camping with Paul, so it's just the girls here. Josie is in charge of security. She already saved me from a large spider. Right now she's dreaming of being tough.

pediatric surgeon visit

So, we went to Springfield (again) today to see the pediatric surgeon (who functions as a urologist). Eve was doing fine in the car, and about 15 minutes from the place I heard her wimpering. I turned around and the lower half of her face was covered in blood. The best I can tell is that in some freak coincidence aiming, she managed to stick her finger up her nose and get herself good. I pulled over and was able to clean her up. But, boy was it scary.

The doctor's appointment went well. I liked him a lot. I explained that Eve had kidney reflux that had supposedly reversed itself, but there had been several occurrences of possible UTI's over the last 9 months (some of which did not show up in urinalysis). I explained about most recent event (smelly pee on vacation), and how it went away with the medicine. He told me that he has had some patients that have had kidney reflux, it reversed, and then after a few UTI's and a new scan it turned out they had it again. So, he is going to schedule a VCUG (an xray test to diagnose kidney reflux) at Baystate (in Springfield) and then we will follow up with him. If she does have reflux again, we have two choices: 1. Prophylactic dose of antibiotics (like in GA) or 2. Surgery that does not involve an incision, but rather goes up the urethra and deposits a substance that prevents urine from going back up into the kidneys (reflux). I asked him if he thought I was being rash or paranoid over a couple of instances of stinky pee, and he said if he thought that, he wouldn't be scheduling the VCUG.

Finally, I told him about the bloody nose and I asked if he thought I should call the pediatrician when I got home. He said no and agreed it was probably freak-aiming (unless it happens again).

neuro today

Today we went to Eve's neurology check-up. She's really lost some tone in her trunk and he noticed she is having more trouble keeping her head up. He also thinks her eyelids are a little more droopy. She is definitely cognitively behind her peers as well. This is something I know, but it is still hard to hear. I also know this is the nature of the beast. She's not going to get better. She's not going to stay the same (always). It's still hard when you have to face it.
I asked the dr. if there was anything we could do about her excessive drooling. He prescribed a medicine that we will try. There are some side effects, but we will start on a low dose and see how it goes. She's been choking/gagging on her saliva if it pools in the back of her mouth and she just soaks her shirts and bibs. Follow-up is in 6 months as usual.

On to more fun stuff. Last week we had a birthday party for two of Eve's stuffed animals. Eve just loves a birthday. She got a new haircut. A little bob with 50's style bangs. Cute.

Here Eve is fooling around with stickers.


School starts next week for both Eve and me. I'm not sure who is more excited.

More Beach Pictures

photo booth

beach vacation

Last week we went on vacation to Ocean City, NJ with my parents, my brother, sister-in-law, and nephews and niece. It was a wonderful week. Truly restorative. It was very hard toting Eve around, and it was definitely a little emotionally hard as well (e.g., watching all the typical kids on the beach), but it was still a lot of fun. Eve loved her time at the beach.

Here is Eve with her adorable cousins. They are so sweet to her. Alex has really grown up and we had lots of fun talking with him and hanging out.

Here's Eve and Jim at the water:

One of Eve's best friends from school was also vacationing at OCNJ that week (what a coincidence!). So we met up on the boards for a surrey ride. Here is a shot of my dad, Arthur (Eve's friend), Eve and I, and Hellen (Arthur's sister). 2 laps and a lemonade. Perfect.

One night we took Eve to the amusement rides. Here's Alex on the carousel.

The park was so loud (with the rides and the pneumatic pressure sounds) that it would have caused Eve to freak out. We brought her ear protection and she did just fine. She still jumped at the blasts of air, but didn't get upset.

Train ride!

Here's a shot of my new niece, Bella. I'm going to ask Trina to send a picture she took of Eve "holding" Bella.


Eve was able to play two arcade games in her stroller. She loved it.



So, now we have about 2 weeks until school starts. Where did the summer go?????

New ramp

Jim built a ramp for Eve's wheelchair! This is about the 4th design iteration, but it's done!

new soft-touch tomato chair

Well, Eve's new chair arrived! It's really great. She sits in it in the morning before breakfast and watches TV. It's nice and low so she can interact with Josie (read: Josie can lick her face). Although the brown part looks like hard plastic, it's actually a soft foam that squishes when you squeeze it.



Another wonderful thing about this chair is that the foam part detaches from the base and can be used on a regular chair (we haven't tried that yet) or - even better - in her net swing!! We bought her a net swing (think of a really small hammock for your butt), but the weave of the net was getting so wide that her head would fall through! I suppose it's not surprising that we only paid 20 bucks for it. So we started using a blanket, but the top of the blanket would fall over her face. I was on a special needs parenting site, and a mom posted a picture of her child sitting in the foam liner in a net swing. Well, I stole that idea faster than you can say plagiarism. It's the perfect solution for the net swing. Eve loves it. I'll take pictures of her in the swing soon.

dr updates

Last week we went to Boston to the Mito doc. We spent about 2.5 hours there and did a lot of talking and updating. She took a lot of blood samples for testing. Some routine, some not. We are going to do the full mtDNA sequencing. Apparently, Dr. Shoffner only did a focused mtDNA sequencing. The hope is that finding where a mutation is will help with treatment. If nothing turns up on the mtDNA, then we will do a focused nuclear DNA search based on her presenting symptoms. We won't be able to do a full nDNA sequencing because it would take too long and cost too much (there is so much nDNA that would need to be searched). So, that's in the works. Also recommended is an eye exam (already scheduled for August), a possible visit with a urologist (Jim and I still have some urinary concerns), and a call to the neuro because of her increased floppiness. Ever since Eve threw up in the beginning of the month she has been extra hypotonic. I talked to the neuro twice on Thursday. He contacted the mito doc to see what blood testing had been done (he wanted certain things like a blood cell count). Some of what he was looking for was done (and was normal) and something (I can't remember what) was not done. He's going to mail me an order for a blood draw that I can do at the local hospital. After that, we will just wait to see him in September for our semi-annual followup.

Strep is floating around Eve's summer program. We are crossing our fingers.

Happy Birthday, Eve!

About a week ago, Jim, Eve, and I went to NJ for a family wedding. Here's a shot of Eve chillin' in the bean bag chair at my parents'. What's really funny is that when Eve is not sitting in it, Josie is.

Jim's mom got an ice-cream cake for Eve the day after the wedding. Even though Eve's birthday wasn't until this past Friday, she wanted her family to help Eve celebrate. Of course Eve loved it.


Here's Eve chewing on her magic finger.

And here is her birthday breakfast (on her actual birthday) with Jim and I. I just can't believe my baby is 5 years old!!!!! She is really growing up.

kiddie pool is over

So thank you so much to the quick acting folks (you know who you are) who helped us get Eve's new soft touch sitter in record time. It has been ordered and should ship in about 2 weeks. We are very excited.

Eve had a wonderful birthday. The celebration seemed to stretch out for a week. I'll post birthday pictures soon.

My kid the heart-breaker

Eve started her summer school yesterday. She loved it. She came home so happy and chatty. She also made a friend. The class walked to a play at the theater festival on campus (her summer school is on the local college campus), and a little boy in her class insisted on sitting next to Eve. At one point during the play, Bonnie (Eve's aid) looked over and saw them holding hands.
Little heart-breaker!

hot

Eve seems to be doing much better today. Her appetite is back and she is in good spirits. However, she's been really floppy today. I am not sure if this is because she got sick yesterday or if it's because it is so brutally hot today. Her bedroom is the only room with AC, so she is spending most of her time in there. Tomorrow she will start her summer school program, so at least she'll get to spend the day in AC then. I'm looking at the thermometer in the living room and it's reading 87 degrees. Inside. Fortunately, her room is 75 degrees. :) Maybe I'll sleep on her floor tonight!

ick

This post is really just for documentation purposes. I find that lately I just can't remember what happened which day of which week when we're talking about symptoms with Eve.

We were going to drive to a lake in VT with a friend this afternoon. Eve was up late last night (1.5-2 hours past bedtime) because of a party, so we put her down early for nap (at noon) after a light lunch. She went right to sleep. At 1pm we woke her up and stuck her right in the car. We drove for a half hour when she started smacking her lips and gagging. She spit up a bit of the bread she ate from lunch. Then about 3 minutes later, threw up the rest. We turned around and came right home. She seems to be in pretty good spirits. It's very hot today, but she had been sleeping in an air-conditioned room and the car had the AC on. I am hoping this was just motion sickness because we woke her up from a nap that she really needed and stuck her in a car. She does not have a fever, although her trunk seemed warm to the touch. I'm not sure if her lethargy is because she's sick or because she was up late last night. We're just going to watch her and give extra cuddles. I'll also slowly start giving her water (a tsp at a time every 15 minutes or so) soon (it's been about 90 minutes since she vomited).

Eve has a fever

So, we gave Eve a haircut a few weeks ago. It was getting long, and I was tired of having to put pigtails in to keep it out of her face. The stylist cut it short. It's much easier, but I'm getting used to it. Today I thought she looked like Shiloh Jolie-Pitt (cute). Tonight we realized it's much more serious than that. There's a certain......side effect....of the new haircut. After her bath and blow dry, we noticed something terrible....



Yes, it was unmistakable........






Eve developed Bieber Fever.

For those of you who don't have a TV, the internet, a radio, or a child under the age of 14, here's a reference point:

Sweet Eve

Two pictures of my sweetie.

Becky the school photographer

A few weeks ago, my friend Allison sent Eve a Barbie doll in a wheelchair. Eve LOVES her. She cried that first night when we told her it was bath/bed time and she had to stop playing. Who knew there was a Barbie in a wheelchair?