Eve of discovery

All is well

2012-01-25T12:38:00.001-05:00

Just a quick update about nothing. Eve is doing very well. She is healthy and happy. She has adjusted so well to her new bed. She definitely keeps us laughing. We were watching video that was taken a year ago in her school. It is amazing how much older she looks now. I suspect that is in part because her hair has changed - she is growing out her bangs. She is so beautiful.

Seamus is also doing well. His next doctor visit is next week, so I'll report his height and weight then. He doesn't seem too wild about his bottles and often doesn't finish them. I have no idea how much fluid he takes when breastfeeding. When it comes to food, however, he's a little eating machine! It's unbelievable how much that boy fits in his stomach. He quickly polishes off 3.5 oz of baby food (a size 2 container) and about a 1/4 to a 1/3 of cereal twice a day. We've added a third fruit or veggie around lunch time, as well. Jim let Seamus hold Eve's sippy cup the other day. OMG, he grabbed right onto it and raised it to his mouth!! So, I'm going to buy him his own sippy cup (with handles) and give him small amounts of water to experiment with. Oh, and he has slept through the night for the past two nights. I hope this trend continues!
His schedule right now is:
7am awake and nurses.
8:30 fruit and cereal.
10am takes a nap (not terribly long).
11:30 nurses
12pm fruit or veggie
1pm nap
3pm nurses
4:30 veggie and cereal
6pm bath, book, nurses
6:45 asleep for the night.
He's been waking up around 3 or 4am to nurse, but I'm hoping that will get dropped from the schedule soon.
He's a happy kid and really easy going. We're very lucky.

Seamus and JoJo

2012-01-11T08:18:00.001-05:00

Seamus has been obsessed with Josie and her tags lately. It's so cute.

Roll

2012-01-02T07:25:00.001-05:00

When Jim got Seamus out of bed this morning, he was on his stomach! This is so exciting for me because Eve NEVER did that. Seamus can already do things that Eve cannot (which is bittersweet), but they have been skills she's lost due to regressions. This is the first skill she never had. It's encouraging. I'm so scared for him because we thought Eve was typical (with some slower development) for about a year after she was born. But every milestone he hits is encouraging.

Turned a corner

2012-01-01T11:35:00.001-05:00

Eve turned a corner overnight. Her fever broke and she got more sleep than I expected. She's still very congested, but her cough sounds better.

Eve is sick

2011-12-31T18:34:00.001-05:00

About five days ago, Eve began coming down with a cold. She developed a cough and we took her to the doctor yesterday to make sure there was nothing going on with her lungs. She sounded clear. So we've been giving her advil, decongestant, and honey for the coughs. Today has been bad. She's miserable. Her nose is running like faucet with thick snot and she's had a horrible hacking cough all day. Her appetite is totally off. She's been drinking some, but not much. We've given extra fluids through her gtube. She choked a bit while coughing after dinner and couldn't catch her breath. Scared herself and us. She has a fever of about 102, so we're going to call the doctor. She's been so healthy lately, I feel out of practice with this. I think it's going to be a rough night.

Eve's new bed

2011-12-26T13:41:00.000-05:00

Eve got a new bed last week. We are so very excited. It's a Sleep Safe bed and it's wonderful. As you can see from the pictures, the bed is higher than a normal bed with is much better for our backs when we transfer her in and out. There are rails on both sides that run the length of the bed (unlike her previous bed that had toddler rails that were about as long as she is). The mattress is snug against the rails, so she cannot become entrapped. Changing the sheets is so much easier as well!

The first night Eve was in the new bed, she was a little freaked out and took a while to get to sleep. However, since then she has had no problem!

Christmas 2011

2011-12-26T13:35:00.000-05:00

It's been a quiet Christmas this year. We are not traveling for once, which is a blessing. It's just so very hard to travel with Eve. She is at the point where her equipment needs are overwhelming. So, the grandparents have graciously agreed to visit us instead. Grammie and PaPa are coming this week and Oma and Pop are coming next week. We are very excited.

Christmas morning was very nice. Eve didn't seem to really care that much about Santa. We are guessing that the real excitement will happen as Seamus grows older. Eve did enjoy unwrapping her presents, but not as much as we thought. She was a little checked out all day. Hopefully it will be better when the grandparents are here to inject a little more excitement.

visitors

2011-12-26T13:30:00.001-05:00

Paul, Tossy, and Henry came for a visit on Christmas Eve. We're so happy that they were able to swing by on their travels. Henry has grown so much since we've last seen him (he's about 4 months older than Seamus). Here are some shots of the boys together.

Seamus gives the scoop.

2011-12-24T20:01:00.001-05:00

Reindog parade

2011-12-24T20:00:00.000-05:00

Earlier in the month, we went to our town's "Reindog Parade." We dressed Josie up and marched down the center of town with every other crazy dog owner. It was chaos and lots of fun. It was hard to walk and film it, so please excuse this shaky video. I was trying not to trip on the animals. But, we saw some of Eve's friends (at the end of the video). Lots of fun!

Playa

2011-12-18T13:54:00.000-05:00

Word to my mommy.

4 month well visit and wheelchair

2011-12-08T06:52:00.001-05:00

There are many things I need to write about. But, I'll start with the best: last night Seamus slept through the night! He slept from 7pm to 6:15am! What a wonderful sign of nights to come.

He had his first ear infection almost two weeks ago, but we got that taken care of ASAP. Amazing what a few doses of antibiotics can do for a kid's comfort. We also had Seamus's 4 month well visit. He's 25.5 inches long (50th) and 13lbs 7oz (10th). So, we're increasing the amount of milk in his bottles during daycare. This slight drop on his growth curve may be because he was sick two days before the well visit. Seamus has also been eating cereal and fruit/veggies twice a day now. So far, little man has had apples, peas, and bananas. He loves his food and has not turned his nose up at anything - not even his medicine. He laps that up like a little kitty and cries when it's finished.

Eve is doing well. She just had her wheelchair adjusted. The seat is wider to accommodate the growth she's had. We still need to work out the kinks (a new tray needs to be ordered, the headrest needs to be adjusted, the tilt mechanism needs to be fixed, etc.) but we're working on it. Her next appointment with the mito doc is June (we are skipping the December visit). We also have an appt with the Physiatrist in June, which is good because she has been scissoring her legs a lot. It's been hard to changer her diapers. She's also been having episodes when she gets totally freaked out in the bathtub - so scared of falling that she screams and cries. Nothing about the tub or bath chair has changed. I hug her and hold her while she's in the tub and it doesn't help. I'm not sure what's going on. There are several possibilities. She could be getting sick and her balance is off. This could be a cognitive decline. Who knows. Other than bath time (and it's not every time, btw), Eve is super happy. She loves her brother and helps put him to bed every night.

First Cereal

2011-11-27T17:56:00.001-05:00

On Thanksgiving, Seamus had his first bowl of cereal (oatmeal). It was a hit.

Uncle Scott visits for Jim's birthday

2011-11-20T10:03:00.001-05:00

chillin'


What do you mean I can't have cake?

highchair

2011-11-18T18:08:00.001-05:00

pictures

2011-11-11T11:24:00.001-05:00

Doesn't Josie look thrilled?

Princess Eve

A friend of mine knit this crown for Eve. Isn't it adorable??

Halloween

2011-11-02T15:10:00.000-04:00

Halloween this year was fun. Eve was a princess. Unfortunately, we were in a rush to eat dinner and head out to trick-or-treat, so I really didn't get a good picture of Eve. She had a princess dress over her fleece, a crown, and some make-up on. Kate and Eve made cardboard decorations for her chair to make it a throne. Seamus had on a teddybear snowsuit. We went to a neighborhood near Eve's school because it is flat (we live on a hill) and would be easier to push her chair house to house. I think Eve was freaked out at first and didn't know what was happening. She started to get upset when we left the first house, but then quickly caught on that each house would give her candy. We ran into several of her (and our) friends while we were out, and that was so great. It's hard to recognize people in costume, but everyone recognized Eve. Here's a picture that one of her teachers took of us. Eve's not so good with flash photography. :)

It was pretty cold out (and we still had snow on the ground!), so we didn't stay out long. That was probably for the best. It was about the experience for her, not the amount of candy. Oh, and she absolutely LOVED having me put make-up on her. She pretends putting make-up on with Oma, but this was the real deal. What kills me is that the girl has lips that were MADE for lipstick. Luscious. When she's 14, I'm sending her to school with lipstick on, I don't care. It's a crime not to. I'll have to put some on her and take a picture. Speaking of pictures, I'll look at the ones that I took to see if I got any with her eyes open. Happy Halloween!

Dragon Mom

2011-10-27T08:13:00.000-04:00

This is a very poignant article from the NY Times that was brought to my attention by my friend, Janet. Well worth a read.
http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html

13 weeks

2011-10-25T09:06:00.000-04:00

Seamus is getting so big. He's getting really good at head control and gives lots and lots of toothless grins. He's a good baby and is a pleasure to be around. He has really discovered his hands and loves chewing them. He has started grabbing things (my shirt, my hair, his blanket) and also likes to babble.

drawing

2011-10-25T09:01:00.002-04:00

Here's a picture drawn by one of Eve's classmates. Don't you just love the wheelchair? I got misty.

Fuzzhead

2011-10-16T17:11:00.005-04:00

Seamus has a lot of hair. After his bath it gets curly when I dry it with a towel. It's the funniest thing. But it will dry straight. Here's a picture to give you a laugh.

He's doing well. At 10 weeks we went to the doctor for his well visit. He's 23 3/4 inches long (70th %) and 12lbs 4 oz (40th%). The weight doesn't show much increase from two weeks prior, but the weights were taken on two different scales. I am not at all concerned. Oh, and his head is 80th%. Maybe they measured that hair.

Also, we started sleep training him last night. It went pretty well. I put him down awake and let him cry for 3 minutes. I went in and comforted him without picking him up, left, and then let him cry for 5 minutes. I comforted him, and let him cry for 7. That was it. He fell asleep. He woke up again at 9pm and we started again. He also woke up at 11:30pm, which is unusual for him. I nursed him and put him down asleep. He woke again at 4:20am and I nursed him. At 5:30am he was up and crying, so I set the timer for 3 minutes. He fell asleep during the 5 minute span. Tonight, we did the 3 and 5 minutes. He fell asleep after 2 of the 7 minute span. We'll see how the rest of the night goes.

*update* Seamus slept from 8:20 pm until 2:25am. I nursed him and put him down. He slept until 6:30am. It was a great night. Oh, and we ditched the swaddle and are using a sleep sack.

Neuro appt

2011-10-16T17:00:00.000-04:00

Last week, Eve had her semi annual neurology appointment. After some debate,we ended up taking Seamus to daycare (rather than bring him on the long car ride) which turned out to be a good thing. Then Jim, Eve, and I headed to Springfield for the neurology appt. Eve started crying in Pittsfield. We pulled over and checked her out. We couldn't find anything wrong. So we carried on figuring she'd settle down in a few minutes. She cried for the next 1.5 hours. Nonstop. Until we got to the doctors office. We think she was scared, but have no idea why she wouldn't calm down. Most of the trip is highway driving, and we kept thinking, "Surely she'll stop any minute. Surely she can't cry the whole way there." She also cried a lot at the doctor's office and finally relaxed when she realized we were just talking with him and there was no procedure. The drive was an awful, incredibly stressful experience. I felt so helpless. I just cannot imagine this being our new reality for car trips. Most of Eve's specialists are 1.5 - 3 hours away.

I asked the neuro if we could see him once a year instead of two times (yes). I mentioned the possible seizures and he didn't seem concerned. The last episode was nearly two years ago, so he didn't feel this warranted anything other than monitoring. He also upped her baclofen, adding two doses of a half pill (morning and afternoon). Hopefully this will relax her legs and make diaper changes easier, but we need to call if there are side effects (most likely sedation). Finally, he recommended an OTC medicine for motion sickness and gave us the dosage. He said that mito patients often have migraines, and that motion sickness goes hand in hand with migraines. I thought that was interesting. The neuro noted her hands being more clenched and that she has trouble holding her head up. We are to call if anything changes.

The trip home went pretty well. Eve watched a DVD and Jim slept. I enjoyed the fall foliage. Eve has been doing great in the days since the appointment. We haven't noticed any changes yet with the increased dosage of baclofen. She is still enjoying school and loves to laugh at her brother.

keeping track

2011-10-01T15:16:00.000-04:00

Seamus weighed 12 lbs 3 oz on the day he turned 9 weeks old. I can't believe how big he's getting! He's quite smiley when he's in the mood. Here are some pictures I took of him:

My mom asked me if I was going to keep a baby book for Seamus. I've decided not to. The blog is my digital baby book. I post pictures and write about development. I stopped writing in Eve's baby book when she started missing many milestones because it was just too difficult for me. Who wants to fill in "age baby first rolled over" when she's 15 months and still hasn't done it? A friend once told me you can have a company print your blog into a book. At this rate, it's going to be one hefty book! But, it's a record of both children and I think I'm just moving along with the times.

Three little ones chillin' together

seizures?

2011-09-30T20:09:00.000-04:00

Eve may have had two absence seizures today. The following was written by her school aide in the communication book:

"On the bus ride to school, Eve was smiling but only the let side of her face was. [The] right side completely drooped, more so than usual. At school she had an 'episode' where I seemed to lose her. Staring off, no blinking, unable to get her attention. The first time lasted about 15 seconds, the second one during snack, lasted longer, about 30 seconds. [I] called her name, gently tapping her shoulders, no blinking no response. She seemed confused immediately after, but continued on with her snack. Very quiet, but no other episodes after that."

We have an appointment with Eve's neurologist in 2 weeks, so we'll mention this to him. We'll see what he says.

baptism weekend

2011-09-29T19:37:00.000-04:00

It was so much fun getting all the kids together last weekend. We don't get to see them very often, so it was just wonderful. It was also cool to show my brother around the area, since this is the town that our grandmother was born in (even though she spent nearly all of her life in Philly).

Left: My grandfather in 1938 Right: the elk today

Dave and the kids at the top of Mt. Greylock

Eve, Giovanni, Alex, and Bella

Eve and Bella laughing

Trina, (a tired) Seamus, and Dave

Oma, (a surprised) Seamus, and Pop

This was one of approximately 300 shots. Five moving targets - this was the best I got.

How we all felt at the end of the weekend

Baptism

2011-09-29T12:40:00.000-04:00

This past weekend, Seamus was baptized. Dave and Trina are his godparents. He wore a baptism gown that has been in my family for decades. It was made for my father for his baptism, and just about all of us have worn it (even Eve). Seamus was so good during the baptism. Here are some shots from the ceremony:

Eye'm jealous

2011-09-18T12:57:00.000-04:00

Eve's 6 year well visit

2011-09-15T22:29:00.000-04:00

Eve's eye is MUCH better. The swelling is nearly gone.

Today she had a well visit with the doctor. No biggie. She is 38 pounds and 40.5 inches tall. Still my little munchkin. Oh! And she got a flu shot and didn't cry!!! What a little toughie.

Mosquito 1; Eve -1

2011-09-14T20:06:00.000-04:00

Well, the bug bite got a little worse this morning. A lot worse, in fact. We gave her some more antihistamine. It looked a lot better by this afternoon. But, here's a video of the peak of the swelling. Poor kid!

7 week weigh in

2011-09-13T18:59:00.003-04:00

Seamus is 7 weeks today and 11 pounds 9 ounces.

Mosquito 1; Eve 0

2011-09-13T18:57:00.000-04:00

Eve went for a walk yesterday afternoon and got bit by a bug. She had a few small raised bumps and her eyelid got a little swollen. It looked about the same this morning. When she got home from school it was a whole other story. After a call to the doctor and a trip to the pharmacy for antihistamine, we hope she's on the mend. Poor kid!!!

protective bubble

2011-09-10T20:50:00.000-04:00

So I had my 6 week postpartum visit with the OBGYN this week. I really like my doctor. Anyhow, she asked how things were and in explaining how difficult the week was I started crying. No surprise. We then had this really great talk about the challenges Jim and I are facing. We are essentially caring for two infants. One just happens to be over 35 pounds. The doctor said that the effect of having a second kid is not additive, but exponential. In our case, she said it is even more so because of the needs of Eve. I explained how I'm so very scared that Seamus won't be healthy. She said that people live in a protective bubble in which they believe that bad things happen to other people. However, that bubble was burst for Jim and I with Eve's disease. So, we worry more intensely, and we will be hypersensitive to every milestone that Seamus makes. I've been thinking about this a lot. I think that's why I tend to focus more on the negatives when people ask us how things are going with Seamus. I don't like to talk about the good things. I'm so afraid that if I say it out loud, or it appears as though I am bragging, that it will be taken away from me. I know this is irrational, but it's how I feel. The first year of Eve's life was filled with blissful ignorance. We thought she was going to be this superstar (and in her own way she is....just not the way we expected). All those things we expected just never happened. I desperately hope this time is different.

First day of school

2011-09-07T19:58:00.002-04:00

Today was Eve's first day of school (mine, too). It was a crazy hectic morning. Jim got Eve up and dressed before he left for work. Seamus woke up earlier than expected and was screaming. Then I needed to feed Eve and myself and get us ready for school/work. I also had to keep Seamus happy and get him ready for his second day of daycare. I needed to fit in a feeding for him before we left the house, but I had to wait until Eve's bus came first. Oh, and did I mention it was pouring rain? It was an incredibly stressful morning. Here's a picture of the little cutie waiting for the bus. It's not the best picture, but I didn't have time to check that I got a good shot. She was very excited.

Seamus? Not so much. Here's how excited he was:

Actually, I think I was making the same face. But, tears aside, we all made it to where we needed to be on time. I was just totally frazzled by the experience. One day down, an entire semester to go.

By the way, everyone is doing well at their respective location. Eve had a great first day, I survived mine, and Seamus hasn't been too fussy at daycare. Speaking of fussy....I need to go pick up the little man right now.

Eve farting around

2011-09-02T21:06:00.000-04:00

Seamus' 4 week well visit

2011-09-02T20:51:00.000-04:00

Seamus had his 4 week well visit today (even though he's 5 weeks old). He weighed in at 10lbs 14oz (65th percentile), 23 inches (87th percentile). He's doing really well.

Here is a video of some happy time he had the other night:

Seamus is five weeks

2011-08-31T22:29:00.000-04:00

Seamus is five weeks old, and this morning he gave me two big grins. Adorable. I can't wait until they become more frequent. Also, I talked to the lactation consultant today and she weighed him. 10lbs 11oz!! He's packing it on. Friday is his 1month well visit, so we'll see how long he is. He actually had a calm and happy night tonight. A blessing after many fussy evenings. He spits up a lot, and I plan to ask the doctor about that. I took a cute video that I hope to upload tomorrow.

cry baby

2011-08-22T19:25:00.000-04:00

All is well in our house. Grammie and PaPa were here for a week and a half. Eve had her buddy PaPa to keep her company and swing her in the swing.

Seamus grew another half pound while they were here. On Monday, 9/15, he weighed in at 9lbs 5 oz. He's incredibly strong and has a terrible temper. Actually, his temper seems to have gotten worse. At first he had one or two fussy periods during the day, but over the last two days he has been incredibly fussy during the whole day (when he isn't sleeping or eating). I'm hoping it's just a growing phase. Eve continues to like being around her little brother. And her dog.

Changing of the guard

2011-08-13T11:32:00.001-04:00

Check out the little mommy:

My parents stayed with us for just over two weeks. It was wonderful to have them. They are such a huge help. I can't lift Eve for about 6 weeks after the birth, so they cared for her while I cared for Seamus.

Now Jim's parents are here for a week and a half. They are also a huge help. Especially since yesterday was Eve's last day of summer school. We couldn't do it without them. Here's a picture of Eve and their dog, Kirby.

Today Seamus had his first bottle. The lactation consultant said that the recommended first bottle is no longer given at 6 weeks, but 2-3. Now we'll wait a few days to see if it messes with breastfeeding. I need this kid to be able to take a bottle for when I go back to work in September. He did a great job with the first bottle.

Tummy time

2011-08-11T17:16:00.001-04:00

10 day well visit and tooth #2

2011-08-06T03:05:00.001-04:00

Seamus had his Dr appointment on Friday. Breastfeeding is going well. He put on over a pound since leaving the hospital. He left the hospital a week earlier weighing 7 12 and now weighs in at 8lbs 14 1/2oz. He also grew a half inch and is now 21inches long. Dr. says he is doing great.

Eve lost her second tooth after dinner on Friday (with some serious wiggle assist from me). I had wiggled it until it was hanging on by a thread and I didn't feel comfortable sending her to bed with it. So a little more effort and voila! This is especially great news because now I can cancel the dentist appointment we had for an extraction (in case the teeth did not come out on their own). I'll take a picture of her bottom teeth soon.

More pictures

2011-08-03T11:52:00.000-04:00

Seamus is a week old and we are all doing well. As you can see, Josie is extremely interested in him.

Josie is doing quite well with him, and isn't disturbed by his crying (although concerned). Eve also doesn't seem to be bothered by his crying. She's been a great big sister, and has adjusted supremely well. I have a theory on why this is. Because Eve needs constant one-on-one care (e.g, to eat, change position, to do anything), she is not feeling much of a change. The only change has been who's providing that care (Oma and Pop). I try to help Eve whenever I can, so that she is not missing me too much.

My little girl doesn't seem so little anymore!

Eve and Seamus

2011-07-30T15:19:00.000-04:00

Here is a video of the first time Eve met Seamus. She came to the hospital room and saw me in bed with him in my arms. Her lower lip immediately stuck out. I'm not sure if it was because I was holding him, or if because she was nervous about the setting. She's never been to a hospital for someone else before. Jim took her out of her wheelchair and held her so she could meet Seamus.

This video is from the afternoon that Seamus came home from the hospital. She's still pretty enamored with him.

Baby Seamus

2011-07-30T09:46:00.000-04:00

Baby Seamus joined our family at 8:15am on Tuesday, July 26th. He weighed 8lbs and 2oz and was 20.5 inches long. The c-section went well and he and I are both doing well. He's a champion eater (like his big sister was) and managed to put on 3oz in one day in the hospital (after his initial loss of a few ounces). He is good tempered (so far) and stinking cute. Eve is over the moon. She seems delighted with her baby brother (so far). We got home from the hospital last night and are tired, but adjusting. Fortunately, my mom and dad are here for a bit to help with Eve. Then Jim's parents will come to help. We are so very lucky. I'll post more and better photos in time.

The hospital provided a "celebration meal" for Jim and I. It was so nice.

New SWASH brace

2011-07-23T19:14:00.000-04:00

Eve's Swash (sitting, walking, and standing hip orthosis) brace came yesterday. She loves it and it definitely helps keep her from scissoring her legs. But, man, it kills our backs to help her walk with it. We bought a rolling stool, but it doesn't seem to work because the legs of the stool trip up her feet. We'll have to figure out a better solution. I think it's important to use though because lately, her hips seem to be bothering her. When we lay her on her stomach on the ground, her knees sometimes turn in (and touch) and her butt raises up and she whimpers in pain. She can't seem to maneuver out of it.

Here's a closeup of the brace. The rods need to be trimmed, but they keep her legs out.

All else is well. I'm scheduled for my c-section on Tuesday morning. I'm doing well, but very ready to not be pregnant anymore.

Eve's birthday

2011-07-23T19:06:00.000-04:00

Well, this post is a week late, but here are a few pictures of Eve's 6th birthday. Thank you to all who sent Birthday wishes, cards, drawings, and gifts.

As I posted earlier, Eve lost her first tooth first thing in the morning. The rest of the day went well. The birthday celebration truly began at dinner. We had Eve's favorite dinner (dumplings) and followed it with cake and presents. We were able to skype with my nephews and niece during the singing of Happy Birthday and blowing out the candles. We then skyped both sets of grandparents during cake and presents. It was a nice way to celebrate when we couldn't do it in person. I still can't believe my baby is 6 years old.

Birthday dumplings and edamame

Skyping with the kids

Eve lost her first tooth!

2011-07-16T09:39:00.000-04:00

Eve lost her first tooth on her birthday!

Baby's room

2011-07-07T10:25:00.000-04:00

Here are some photos of the baby's room. I have just under 3 weeks until the c-section. Since we don't know if it's a boy or a girl, I went with a simple and gender neutral theme. I bought some fabrics and made the valence, wall art, and lamp shade. A friend made the quilt hanging on the side of the crib. Jim still needs to hang a mobile over the crib that another friend made. I'm also on the search for a new rocking chair cushion.

All else is moving along. The wood stove will be finally installed tomorrow. Jim spent the past week fixing the drywall and painting the wall where the pipe was installed. Then we can clean up in the living room. I still want him to set up a clothes line for me, and we need to install the car seat and set up the baby swing. The doctor says I am doing very well (even though I am slowing down and getting so tired). This baby is super active and takes my breath away at times.

dentist and lift

2011-07-03T13:07:00.000-04:00

The trip to the dentist was stressful. Eve screamed bloody murder the entire time. The dentist didn't even touch her. The good part of the screaming is that she gave the dentist a great view of her teeth. The dentist gave us some recommendations. We are to keep wiggling the loose baby teeth (in front of the adult teeth) and twist as we wiggle. We have an appointment for the end of September to extract those teeth if they don't come out on their own before that. In the meantime I need to check with the mito doc on what types of pain relief Eve can have (e.g., Novocaine, laughing gas).

The lift came on Wednesday. It's pretty big. I'll have to take a picture. It's a manual lift (not electric), but I'm so glad to have it on hand. We're going to move the stander to the basement (Eve is getting measured on Friday for her SWASH brace) and we'll put the lift in Eve's room.

Just about 3 weeks until my c-section. We're putting the finishing touches on the baby's room and getting the wood stove squared away. Jim had to patch the drywall where the pipe went in and now has to prime and paint that wall. We are hoping the guys hook up the stove at the end of this week so I can get the living room back in order. So much to do in so little time!!

semiannual trip to mito doc

2011-06-26T22:02:00.002-04:00

This past week we made our semiannual Boston trip to see the mito doctor. We first had an appointment with a physiatrist. We weren't sure what to expect, and at first thought the appointment might not have been very helpful, but boy were we wrong. The Dr. spent nearly two hours with us. Eve was excellent and calmed down very quickly while we talked. She even let him examine her and laughed when he joked with her. We talked about the Baclofen she is taking for her legs. He said that usually muscle spasms don't wake up a child, but that something else does and then the legs spasm. However, because the Baclofen stopped her nightly wakings immediately, I suppose he agrees it is helping. He was not at all concerned about her range of motion yet (unlike the previous physiatrist we saw who wanted Eve to immediately have leg immobilizers for nighttime to prevent contractures). He said she looks great. He also said that as long as she goes through the full range of motions with her muscles/limbs twice a day (which she probably does with her spastic movements throughout the say), she should be fine.

He did recommend a brace called a swash (standing, walking, and sitting hip orthosis). When we hold her up and ask her to "walk" or stand, she crosses her feet at the ankles. This can be bad for her hips (which are already slightly out of socket). The swash brace keeps her feet/legs from scissoring, and will be great for her hip development. He said that if we get a rolling stool (like in many doctor's offices), and we hold her up to "walk" in the brace for 5 minutes 2-3 times per day, that it would be awesome for her hips. He said it would be better for her than the stander. Although it could be worn when she sits, she wouldn't need it then because she doesn't cross her legs when sitting. The doc called down to the equipment clinic and had a brace brought up for us to try out. Eve loved it and it totally helped keep her feet from crossing. So, he wrote a Rx for it and I can get Eve measured at an orthotics provider closer to home. Here are some pictures of Eve in the trial brace:

Here she is getting fitted

We also talked about her digestive health. He recommended increasing fiber to help move stool along her bowels. As a muscle, her colon is affected by her disease and is slower than that of a typical child. We also talked about how to get her on a BM schedule so that she could go in the evening (rather than in her diaper in public whenever the urge strikes). Finally, he gave us his home email address in case we had any questions that needed a quick response or just wanted to consult with him rather than driving to Boston. It was an amazingly helpful appointment. Unbelievable, really. Fantastic doctor.

We then had our appointment with the mito doc. The previous doctor we had been seeing left the practice, and now it's just Dr. K. He is pretty well known in the mito world, so we were pleased to see him. He spent a long time with us and asked lots of questions. I learned about Eve's heat sensitivity. Because she really doesn't sweat much, heat can be a major issue for her. He said it's best to cool her down with water (internally as well as externally) and it's bad news if she gets all pale. We told him about her eyesight change and I mentioned how her eyes are always dilated. He said that's because her autonomic nervous system is affected by the mito (e.g., the insufficient sweating). We asked him if we needed to see him every 6 months, or could stretch it out because it's such a massively stressful trip to Boston. He recommended we make an appt for 6 months from now and if when that time rolls around we feel we don't need it, we can cancel it. However, he does want to see Eve every 12 months. He said that his job is to monitor her and ask questions that other specialists might not be asking. He is recommending further genetic testing to hopefully isolate the location of the mutation. This would help to get Eve included in clinical trials and tell us if her mito disfuntion is primary or secondary to another disease.

One thing that concerns me is that doesn't seem to be growing much. Her weight is still 35.5lbs and she is still 39 inches long. However, she doesn't appear malnourished. And, actually, the smaller she is the better as long as she is still healthy. It makes it easier to care for her. Dr. K should send a letter in the next few weeks detailing the appointment and I will post anything I've forgotten.

In other news, Eve's dentist appointment is Tuesday morning. We are also having a portable lift delivered on Wednesday. That will lift her from bed to chair or chair to floor, etc. This is so important since I only have 4 weeks until delivery of the new baby and it's getting really hard for me to care for Eve. After the c-section it will be impossible to lift her for quite a while. The lift will be vital.

I'll update this week on the dentist appt and the lift.

pictures of the specs

2011-06-26T21:02:00.001-04:00

Eve has been doing well with her new glasses. She's been keeping them on her face and watching TV through them. It will be interesting when she goes back to school to see how her behavior changes.

specs

2011-06-15T09:08:00.001-04:00

So, I'm 33 weeks pregnant and caring for Eve is getting really difficult. We're both getting so big. ;) Consequently, I can't take her to appointments by myself anymore. Yesterday we had quite the ordeal at the eye doctors and I am *so* glad that Jim was there to help. It was physically and emotionally draining.

Background: Eve has had her eyes examined twice before (once at 2 years old and once last summer) with a result of slight astigmatism and eyesight that is fine. Two weeks ago, Eve's teacher mentioned that they thought she might have eyesight issues. She used to be able to identify classmates (e.g., "Where's Bobby?") by looking at them , but recently has been unable to do that. The speech therapist recommended bringing the students closer to Eve (approx. 5 feet away) and suddenly Eve could easily complete the task. This suggested an eyesight issue and not a cognitive regression. So we made an appointment with a eye doctor in Pittsfield who has worked with kids with multiple disabilities (and has evening hours so Jim could come).

Eve has been a nightmare in medical settings lately. I don't blame her. She's had some invasive procedures this spring and has just been so fearful. She cries the second she enters a waiting room. So we tried to prepare her by telling her we were going to the eyeglass store. When we arrived, Jim took her around to look at all the frames on display. Bless her heart, she tried to keep it together but was wise to the situation. Her lip kept sticking out. When we got called back to the exam room, it was all over. Screams and tears. We tried everything. That poor doctor. She was barely able to examine Eve. FINALLY, I stood holding Eve with her head looking over my shoulder and the doctor was able to look into her eyes with the light and little glass reflector.

Result? Eve is significantly farsighted and needs glasses. I asked why she was able to see classmates better up close if she is farsighted, and the Dr. said that totally can happen. She seemed very surprised that Eve's last eye exam (less than 12 months ago) didn't indicate a need for glasses. I explained that Eve's disease is progressive and involves muscles. She wants to see Eve back in 6 months. Anyhow, then we picked out some really cute frames. They are purple and should be ready in about a week. The Dr. thinks it will make quite a difference for Eve.

Jim and I talked about it afterward. I think we were both surprised that Eve actually needed glasses. We didn't think her eyesight was really that bad. Eve's regressions from mito have been so subtle that it's very easy to ignore the fact that she is losing ground. When we are faced with evidence that regressions have occurred, it's a bit of emotional hit for me. This is compounded by the fact that medical appointments are such an ordeal (and usually involve travel as well). It's tough to keep it together when you just want to cry along side your child. It's stressful because I feel bad for Eve (who is just so scared), for the doctor (who is just trying to do her job), and every other person in the office (who has to listen to the screams). I also feel bad for me. (BTW, you know you are having a pity party when you watch an episode of Extreme Home Makeover and start crying at how lucky the family is - BEFORE they get their home makeover - simply because the affected child has more independence, mobility, and communication than your child ever will). I know that I am extra emotional thanks to pregnancy hormones, and some days are better than others.

I'll post pictures when we get Eve's new specs. She will look so cute.

farms and the 'Luce' Tooth

2011-06-11T21:45:00.001-04:00

Eve went on a class trip to a local farm. Here are some shots of the animals she saw:

When flossing Eve's teeth nearly two weeks ago, we noticed that she's getting a big girl tooth. Unfortunately, it's coming in *behind* her baby tooth. Since then, it has come up more and there is a second tooth coming up next to it. The baby teeth in front of them are a little bit wiggly. Eve has a dentist appointment in 2 weeks, so we'll find out then if this is a big deal or not. Until then, she's my shark baby.

overdue pictures

2011-05-08T13:43:00.000-04:00

Here are some pictures I promised:

Reverse Dog bite

Kate and Eve making cookies

My birthday in April

Grammie, Eve, PaPa, and Josie

UTI...again

2011-05-01T07:49:00.000-04:00

Tonight I plan on posting some cute pictures/video, but for right now I just want to get out some details.

Two weeks ago, Grammie and PaPa came for a visit during Eve's spring break. Eve had a blast. A whole week of the world revolving around her - what could be better? She really enjoyed their visit and so did we.

The day they arrived, she developed a cold. Stuffy and sick sounding, she got through the week with nightly decongestant, motrin, and a humidifier (incidentally, she had been off the mito cocktail for 2 weeks at that point because of a switch in formula and subsequent insurance denial of coverage...not sure if that is related). We kept an eye on her. Fortunately, after about 10 or 11 days, it started to improve on its own. Usually these things end up needing some medical intervention because she can't seem to shake it. It's now a full 2 weeks and she's just left with a cough at night. However, I still needed to take her to the doctor last week. She has stinky pee again. I waited for about 2 weeks and then reluctantly took her in. Because of the two times that we asked for a urinalysis and it was negative, we're a bit gun shy. What if we're wrong? After a thorough airing of the pros and cons of getting a urine sample to test for a UTI (which needs to be done via catheter), we decided to do it. And guess what....positive for e. coli. So, Eve is now on an antibiotic and the doctor is ordering the blood test that the pediatric surgeon suggested (which will test for some enzyme or something that makes people susceptible to e.coli UTI's). If the blood test is positive, Eve will go back on a prophylactic dose of antibiotics (like she was in GA when she had kidney reflux). Also, she's back on the mito cocktail because the neuro and his staff worked very hard to get it covered.

follow-ups

2011-04-09T20:35:00.000-04:00

So, Eve has had a couple more Dr. appointments. Two weeks ago, we went back to the pediatric surgeon to followup on the VCUG. Unfortunately, she totally got sick in the car. It was a mess. We thought it might have been car sickness, but I think it was a stomach bug. Which I have to say is a relief. I was not looking forward to another issue that we had to deal with. Especially since 90% of her dr. appts are at least 1.5 hours away. Anyhow, the pediatric surgeon said she does NOT have kidney reflux. He did say that if she gets another UTI and they determine it is caused by e.coli, there is a blood test he wants her to have. Something about some people having a predisposition for UTI's caused by e.coli. It would require a prophylactic dose of antibiotics. So, that's good. We don't need to follow up with him.

Then on this past Thursday, we drove back out to Springfield to go to the Shriner's Hospital for Children for an orthopedic evaluation. Her pediatrician referred us after we saw her about Eve's legs cramping up. What a nice hospital. Very chill. It was amazing to see all the other children in wheelchairs. Eve fit right in for once. It made me a little misty. Anyhow, they talked to us and moved her legs around. They also took xrays of her pelvis. I forget the terminology, but her hips are partially out of their sockets. They said they don't think her muscle cramps are related to the hips, and that this is to be expected of a child who is in a wheelchair and doesn't stand, etc. They said it may also be why she isn't tolerating her stander. She doesn't really seem to be in pain because of her hips otherwise (e.g., diaper changes don't seem to cause discomfort). One option would be to fix it with surgery, but there is no guarantee they wouldn't pop out again. We discussed our philosophy that Eve's happiness is most important. We are not interested in forcing a kid to have surgery if there is no hope she will ever walk or move independently. The doctor agreed and said we should just monitor it for now. We don't need to follow up with them (yay!) unless there is a problem. And if it turns out that she is in pain from her hips we can always manage it with medication.

Speaking of medication, about a week ago, Eve started waking up again in the middle of the night. I called the neurologist on Thursday and he increased her dosage of the Baclofen. Eve woke up just once that night, but about 6 times last night. It's very hard to be patient in the middle of the night when you need to get out of bed so many times. She is clearly uncomfortable, and her legs are almost locked, making it too hard for her to shift position. I don't know what to do. I guess we see how it goes for another week and then call the neuro back. We do have an appointment with a physiatrist in Boston in June.

All else is well. I'm feeling great and the baby is kicking up a storm. Jim is doing well and Josie is, well, Josie. A lovable pain in the butt.

Baystate visit

2011-03-18T22:10:00.001-04:00

Yesterday we took Eve to Baystate for some testing/appointments. First stop was her neuro checkup. A quick visit. We mentioned how her leg has been acting up. He asked us if we thought she was in pain. The answer to that is definitely sometimes. There are times she will wake in the middle of the night crying fast and hard. It's like her little leg is having a spasm. He recommended either Valium or Baclofen at night. He ended up prescribing the Baclofen because it lasts longer and is less sedating. So we gave it to her before bed and - miracle of miracles - she slept through the entire night!!! So, I truly hope it gave her relief and was not a fluke. So, we'll see how tonight goes. We also told him that she has an appointment at the Shriner's hospital to look at her leg and muscles. (**update: She slept through the night again!**)

Eve also had a VCUG at the main hospital. I was dreading this, since Eve has had it done twice before and it was not pleasant to say the least. Fortunately, this time was different. Rather than placing her on a regular Xray table and filling her bladder all the way and watching her scream until she finally pees on the table, it was much better. They had her on a table that looked like it was connected to a CT scanner. They catheterized her and slowly dripped into her bladder a liquid with a small amount of radioactive material. They put her diaper back on and she just had to lay on her back. She was scared and cried, but wasn't in pain (after the initial cath process). She wasn't hysterical like in the past. I was able to tell her that if she just peed, we could get out of there. It wasn't much longer before she did. The staff was great, and it was a much better experience than I was expecting. So now we wait for about a week until we have our followup with the surgeon.

Happy Birthday, Josie!

2011-03-17T18:42:00.000-04:00

decisions...

2011-03-09T12:34:00.000-05:00

We have happy news to share - we are having a baby this summer (end of July)! I had my ultrasound yesterday and all looks well. We don't know if it's a boy or a girl (by choice), but are relieved that for now the baby appears healthy. I'll post pictures soon, but there are no cute profile shots - just Skeletor frontal face shots.

So, we need to make a decision about the future of this blog site. Do I keep it about Eve and create a separate blog, or do I shift the focus to include the new baby and have the blog center around our family?

details

2011-02-28T15:21:00.000-05:00

This is one of those posts that is more for me than you, but it will keep you up to speed on what's going on.

Eve is well. She's been relatively healthy. She had a UTI recently, so we have a VCUG scheduled at Baystate later in the month. It will definitely not be pleasant for her, but we will be able to see if her kidney reflux is not resolved as previously thought. That same day we have an appt with the neuro. Jim will be with me for both appointments, which is a huge help. The following week we will have a followup with the pediatric surgeon (who really functions as a pediatric urologist) to discuss the results of the VCUG. I was also able to schedule an appointment with a physiatrist in Boston for the same day we are headed there this summer for Eve's mito doc appointment. I am hoping this is a better fit than the last physiatrist that we saw a year ago. Eve's functioning has changed, so we also may need this appointment more than we did last December.

Eve seems to be having more trouble adjusting herself throughout the night. She always sleeps on her stomach and until now has had no problem shifting her head from one direction to the other. Lately she often wakes up crying with her arms flailing up and behind her. She seems to be struggling to get a purchase on the mattress to adjust her body. She just doesn't seem comfortable. Some nights are good (0-2 wakeups) and some nights are bad (approx 15 wakeups). It's been tough. We'll mention this to the neuro and to the mito doc and physiatrist.

I am also concerned that doesn't seem to be tolerating her stander. This has been an issue for a while at school, but not at home. Over the last 2 weeks it has happened at home as well. We are not sure if she just doesn't have the strength anymore or if it is just no longer comfortable.

Oma and Pop came for a visit this past week (and I can't believe I didn't take a single picture!!). Eve had a blast. So much so that when they left she was a pain in the butt. But, after a week of their undivided attention, it was an adjustment back to Mom and Dad who need to actually do stuff. Today was back to school and I sang a song about it (literally) this morning. Yay! All else is well.

snow dog

2011-02-05T10:40:00.000-05:00

We've gotten lots of snow up here. I was shoveling off the back deck today and I let Josie out. She jumped off the deck and belly flopped into snow that is over her head. I grabbed the flip when she couldn't get back up on the deck.

Good morning, JoJo

2011-02-05T09:25:00.000-05:00

videos

2011-01-10T18:42:00.003-05:00

Merry Merry

2011-01-09T13:35:00.004-05:00

I know it's been forever since I updated this blog. Better late than never. We had a lovely Christmas. Jim, Eve, and I went to NJ to see the family. While we were there we experienced the crazy snowstorm that crippled Monmouth County. Actually, Eve and I experienced it. Jim made it back to MA before the storm hit (he had to work that Monday). Fortunately, we got to see most everyone briefly before the storm. Unfortunately, we didn't get to see most everyone after that. It was unreal how affected the area was. Eve and I ended up staying an extra day to be sure we had safe travels.
Santa was very good to Eve this year. We are very lucky. Life is now getting back to normal. Eve is back in school and having fun. Last night we went out to eat and she was an angel. We can now add Vietnamese food to the list of food Eve likes. She's such a good little eater!

Eve and Josie:

Eve and PaPa:

PaPa, Grammie, Eve, and Uncle Scott:

My niece, Bella:

My nephew, Giovanni:

My nephew, Alex:

Alex and Pop:

In going through the pictures I realized that there are some prime players missing. Next year I will try harder to make sure I get shots of everyone. I promise my brother and SIL were there, too. Also, my mom, Jim and I were present. I hope your Christmas was healthy and happy.

blech

2010-12-15T18:24:00.002-05:00

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!

2010-11-30T08:07:00.003-05:00

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

2010-11-16T19:39:00.002-05:00

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!

2010-10-28T19:05:00.003-04:00

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

2010-10-28T19:02:00.000-04:00

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

Uncle Scott

2010-10-14T16:29:00.003-04:00

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

2010-10-05T18:39:00.003-04:00

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

2010-09-26T21:58:00.002-04:00

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

2010-09-25T21:57:00.004-04:00

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

2010-09-03T15:11:00.001-04:00

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

2010-09-01T19:25:00.004-04:00

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

2010-08-25T19:18:00.002-04:00

photo booth

2010-08-24T19:54:00.001-04:00

beach vacation

2010-08-23T19:57:00.005-04:00

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

2010-08-10T09:24:00.001-04:00

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

new soft-touch tomato chair

2010-08-01T13:04:00.003-04:00

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

2010-07-24T13:46:00.002-04:00

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!

2010-07-19T21:01:00.004-04:00

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

2010-07-19T11:18:00.003-04:00

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

2010-07-08T16:05:00.004-04:00

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

2010-07-06T14:15:00.002-04:00

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

2010-07-05T15:04:00.002-04:00

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

2010-06-30T20:38:00.004-04:00

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

2010-06-30T20:34:00.002-04:00

Two pictures of my sweetie.

Becky the school photographer

2010-06-30T20:30:00.003-04:00

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?

Eve's DAFOs

2010-06-06T15:16:00.003-04:00

On Wednesday, we picked up Eve's new leg braces. These are the ones ordered from Cascade (similar to ones we got in GA). The orthotist picked the pattern. :) I'm not sure if he paid attention to the fact that the girls in the pattern are wearing half-shirts. Oh, well. They fit her great and are sooooo much better than her last pair of AFOs. Man, those things are crappy compared to these. I am so glad we switched orthotics places. I gave Eve's DAFOs (the old ones made by Cascade) to the new orthotist so he has examples to display in his office. I think it would be super helpful for patients to be able to see what they actually look like in person before ordering them.

trips, parade and yardwork

2010-06-06T15:07:00.003-04:00

Eve went on a school field trip to a local forest. Here is a picture of a blindfolded Eve experiencing a tree without using her eyes. The kids had fun looking at all kinds of creepy crawlies and listening to the sounds of the forest.

We also went to our town's (very small) memorial day parade.

Jim's been working hard around the house. At the side of our driveway are these really tall ornamental grasses that I hate. They are in a bed of disintegrated mulch and weeds. This picture is from last month. By the end of the summer they will be good 5-6 feet tall and obstruct your view of the house and (more importantly) other cars as we back out of the driveway.

Jim dug them out and we moved them (man were they heavy!). We then laid down some sod and I think the improvement is miraculous! Next steps: wheelchair ramp (if you look really hard you will see the beginnings of one to the side of the steps) and hedge trimmer.

I heart Eve

2010-06-03T16:10:00.005-04:00

On Tuesday, Eve had a cardiology appointment in Springfield. All went well. They actually managed to get a blood pressure reading on her (has never been done before while she was awake). They then did an EKG (which she cried through) and an ultrasound (which she cried through half of). She just gets so scared. Anyhow, the doctor told us that everything looks perfectly normal and that we should come back in 2 years (or if she has a major illness/regressions). The heart is a muscle, and thus can be affected by her mito.

Yesterday, we also picked up her new DAFO's. These are ankle-foot orthotics made by Cascade. They have two parts to them and are very cool. I will post pictures this weekend. Eve has no anxiety at the orthotists, btw.

The PT has written the letter of medical necessity for the special needs stroller and now the waiting begins.

popsicle

2010-05-24T20:32:00.003-04:00

Today was very hot (mid to upper 80's). So, we decided to give Eve a popsicle after dinner. Because of the inevitable mess, we stripped her down and gave it to her in the tub. She loved it, but you'd never know it from her face!

pictures of the new wheelchair

2010-05-23T17:12:00.005-04:00

Here are some pictures of Eve's new wheelchair. We're getting used to it. It's very heavy and not convenient for transporting in my vehicle. We've since ordered a medical stroller. The wheelchair can be used for school primarily, and we can use the stroller for around town. Eve picked the color of the frame on this chair. Pretty slick.

This is a "tilt in space" wheelchair. It tilts back for those that spend lots of time in wheelchairs so they can ease pressure on their bottoms. It has a pedal in the back that allows it to tilt back (very easily). Eve isn't a fan of the tilt as you can see. She doesn't feel secure. But, we tilt it just a little (not as dramatically as this) when we use that feature.

Sheep to shawl

2010-05-23T17:08:00.002-04:00

At the beginning of May, we went to a local farm for their sheep shearing day. Eve really enjoyed looking at the sheep and the goats. Goats are her favorite animal to visit with.

catching up

2010-05-23T16:41:00.005-04:00

Obviously it's been a while since I've posted pictures. Life has been incredibly busy.
Here are some Easter pictures:

We also celebrated my birthday in April. Josie loves birthdays! Eve, too.

new chair

2010-04-26T14:28:00.002-04:00

Eve's new wheelchair was delivered last week. I'll post pictures soon, but if I wait to write until I have pictures, it will take forever. I wanted to jot down my thoughts first.

So, it's been a frustrating experience. It's not any one particular bump along the way, but all of them combined that have been frustrating. The whole process took 6 months because of several issues including: a letter that sat on a desk for 2 months, an insurance issue, a tech getting into an accident, and a busy DME provider. Anyhow, during those 6 months I managed to convince myself that this chair would be the answer to all our chair problems. It would be perfect - just the greatest. Needless to say, there is no perfect chair. I totally had unrealistic expectations, so I was bummed when they weren't met. The chair fits Eve very nicely, and she looks more comfortable in it. It has great features (including the ability to tilt) that will grow with her and her increased needs. However, the handles are too high for me to comfortably push (but they need to be high when the chair tilts), the footplate is not properly adjusted (it goes behind her feet), and it's a royal PIA to get in and out of the car. I have to take it apart and fold it down, and it is wicked heavy. It makes quick trips to the store out of the question. There is nothing convenient about it for us. Soooo....I spent the weekend pretty depressed about it. We didn't even use it. I sent it off to school today and got a call from the PT. She talked to me about the issues with the chair (she also thinks the tray needs to be improved). I mentioned the struggles we are having. When the DME provider dropped off the chair, she mentioned that she has had luck in getting a special needs stroller approved for families that cannot transport the wheelchair in their cars. The PT talked to her about this and Diane (DME) will be coming to school on the 12th of May to adjust the chair (the earliest she can come). She will bring a letter with her that the PT can use as a template so that insurance will cover the stroller. I am hoping she can bring some sample strollers for us to look at that morning. I am feeling much more encouraged.

Last week, Eve was casted for new AFO's. We went to the new orthotics place (which I like much better). The orthotist is sending out the molds to Cascade (a company in WA) that will make the AFOs (actually they are DAFOs). These will be like the ones she got in GA. I am very excited about that. Finally, last week the old orthotics place called to tell me that Eve' Benik wrist splints are in (5 weeks after they were supposedly ordered - should have taken 2 weeks). They wanted me to drive the 30 minutes to pick them up. I don't think so. Send them in the mail. The whole process has been 4.5 months for splints that (if they were ordered correctly) should have taken 2 weeks.

Eve is doing well. Growing like a weed. Happy. Sleeping a lot lately.

3 parent IVF

2010-04-14T22:46:00.003-04:00

I'll compose a longer post soon, but I just wanted to pop on here for a minute. I'm on my way to bed, and for some reason I just happened to turn on BBC World News America (which I never watch). They were running the following story about research on possibly preventing mitochondrial disease by doing a 3 parent IVF procedure:
http://news.bbc.co.uk/2/hi/health/8619533.stm
Obviously, this would only prevent mito if the cause was a (non-sporadic) mtDNA mutation. It's very interesting, but I am not sure how I feel about it. I was so shocked to see a news piece about mito that I totally burst into tears. But, it's also very late and I am very tired. Off to bed...

AFOs and UTI

2010-03-31T10:16:00.002-04:00

On Monday, we had our appointment with the new Prosthetics and Orthotics place. It was a great experience. The orthotist, looked at Eve's braces (which have been irritating her) and her legs and feet. He adjusted the braces to buy us some time, and is going to try to get a new set of AFO's approved by insurance (since it's only been a few months since we received her last pair). We're hoping to get a pair made by Cascade and this office does order from Cascade. I felt very much relieved that this is a much more professional and competent office.

Also, I had to take Eve to the pediatrician yesterday. She didn't sleep well Monday night, and woke up with the tell-tale stinky-pee diaper. Yup, urinary tract infection. Low grade fever by the afternoon. So, the doctor had to catheterize her for a sample, and preliminary results showed white blood cells. Final results will be in on Thursday morning. We started her on antibiotics last night.

All else is well, but having back to back days with medical appointments (with one being unexpected) reminded me of just how healthy she's been this year. This is what it was like last year. You never knew just when you'd need to see the doctor and there was an element of lack of control. So, I am so very grateful for how well she's done this year.

Josie is two!

2010-03-28T22:10:00.003-04:00

Josie turned 2 on the 17th. Happy Birthday, Jo Jo.

visit with G and P

2010-03-28T21:42:00.002-04:00

Grammie and PaPa came for a visit last week. We all had a wonderful visit and Eve especially loved spending time with her grandparents. She squealed with happiness when they took her out to the bus each morning. It was if she was showing them off.

All is well with Eve. We went for her GI checkup last week and the doctor taught us how to change her g-tube button (it needs to be done every 4 months or so). Now we don't have to make a trip to his office 3-4 times a year. Also, after much frustration with Eve's Orthotics place (including waiting 2 months for hand braces that only take 2 weeks to be delivered from the company that makes them - and then to fine out that the guy ordered the wrong braces.), we're going to a new orthotics place tomorrow!! Eve's AFO's are irritating her feet and her PT recommends that she doesn't wear them anymore, so hopefully we can get it fixed or order new ones (and hopefully insurance pays for it).