Fun in the snow

Both girls still have a cold. Ashley has a strong cough and is following her normal schedule and smiling a lot. Hope looks a little sicker and hasn't woken up yet today (it's 1:30pm right now). When I move her to another spot, or change her diaper, she does cough, she just doesn't wake up. So, I'll let her sleep for now and hope that the rest gets her better quick.

Hope says, 'Thank you for the cozy sleeper, Aunty Kyla'.


This next photo is our backyard. Brodie and I built a little snow slide that we hope will grow bigger as more snow comes. The ice rink is still in progress. Brodie has been having fun outside with our neighbour, Savannah.

Happy New Year everyone!

Two sick girls

Both girls have a cold. Hope is especially snuffly and rattly, with multiple seizures and a strong cough. Lots of cuddles today. Ashley is still smiling a lot and has a very strong cough.

Not too exciting.

Brodie gave the girls a big hug for the Christmas gift they gave him (good thing I thought of that). Ashley is still doing great and we're all having some lovely down time after the excitement. The best part of today was watching Brodie have fun outside with our neighbour's daughter.

Looking at Hope, I get a little depressed. She's content in the mornings and sometimes you see the hint of a smile and an occasional coo. But the crying starts earlier every day. It's been 5pm to 8 or 9pm for the most part, and then yesterday it started at 3pm. Some days she can be slightly comforted by holding or a soother, but usually the holding just makes the crying worse. I can't seem to stop trying to comfort her. Inevitably, my cuddles and songs make things worse and I have to put her down and let her cry. I miss my smiling Hope.

Make a Smilebox slideshow

Neufeld Christmas Gathering today

We had my family over to our place for Christmas today. It was great. The kids were so fun to watch and Ashley smiled almost the whole day. Hope had her usual crying spell in the evening but actually went to sleep at bedtime both yesterday and today, probably because I've stopped using the midazolam. It's nice to see her sleeping at night again.

Christmas fun begins.

We're just back from Christmas in Brandon with the Falk side of my family. Brodie had a great time playing with the cousins, and Ashley smiled with all the noise and cuddles. Hope smiled all day, and still had a hard time in the evenings. In fact, she was awake the entire night Saturday night. I'm at a loss, as to what to do.

Looking forward to family time this week.

A game of catch.

Here is Brodie playing catch with Hope. Who says he can't play with his siblings?! We can make anything happen. We just put the ball in Hope's hand and manipulate her arm to throw the ball, and Brodie throws it, so that it lands in her lap. I love it when he gets playtime with the girls.

Hope had a rather bad evening last night. The crying continues each evening, but last night it was escalating and the Midazolam (even though it's increased) is still ineffective. I wish I could fix it, whatever is bothering her. Ashley is full of smiles.

Christmas baking...

Brodie and I were doing some Christmas baking, and Alex turned on some music. Not Christmas music...but 'poker-face'. I had a great video of Brodie and Alex "gettin down", but Alex got to the camera and erased it before I could stop him.

Hope and Ashley are the same.

Pretty good...

Everything here is settling into a nice routine. Ashley smiles and naps, Brodie plays and goes to school, Hope smiles, has seizures and cries for a couple hours in the evening. At least she isn't screaming anymore.

Brodie is doing fairly well with his glasses and patch. He even told me to post this photo on the blog, so he really must be used to it. It's nice to see him adapting.

nap?

Look what happens when Alex says he just wants a little cuddle?!?

Did I forget to mention that we are trying to keep Hope awake during the day, so that she can go to bed at 6pm and skip the crying/seizure episode that happens every night? Apparently, Alex missed that part. So now we have a 'crying Hopey' instead of a 'sleeping Hopey'. Oh well, we'll try again tommorrow.

Good day today, no sickness and plenty of smiles all around.

A day out...

We had no puking today, and decided to have a day out. So we packed up all three kids and went to the mall. A first in over six months, possibly longer since I can't remember the last time we had a nice day out that didn't involve appointments. The girls did great, had naps in their stroller, and I got some Christmas shopping done. Brodie had fun pointing out the good toys to buy.

Hope is crying right now, but not screaming. Wish I could figure her out.

Winter Concert

Brodie's first Christmas concert today was called a Winter Concert and it was so cute. Brodie had a quirky smile for us every time he glanced our way. He managed to recite some of the words and get into some of the actions, but spent a lot of the time smirking at his friend, Reese, who was standing beside him.

The girls were both on a pedialyte diet today, and no vomitt was allowed. Pretty good day, although Hope is back to her crying spells in the evening, despite having no nap and going to bed at 6pm.

Messy evening...

Wow, I just finished telling someone today, how well Hope is doing after her surgery. She did great for her physio appointment today. She was smiley and wiggley and interactive. Ashley slept through it (we wondered if she was sick). Then this evening both girls started a puking competition. First Ashley, then Hope, then Ashley, then Hope again...and Hope again. I guess Hope wins. I have to admit, it's not my favorite past-time...puking competitions that is. I'm hoping we get back to the smiling fun soon.

fun with Grandpa...

Brodie had some fun outside with Grandpa Neufeld today. They were preparing the spot for our ice rink. If we can't get him to the rink to play hockey...the rink must come to us. We're all excited.

Hope had a normal day, with a lot of seizures and some attempted smiles. I tried something different today. I let her sleep in (because she isn't sleeping at night), and then didn't give her a nap, and put her to bed at 6pm. Voila! No crying spell. It's almost 10pm and she's still sleeping, maybe it's a breakthru. Yeah for sleeping babies.

Better...

Today looks better for everyone. I was able to eat my first meal since last Thursday. Hope had a great nap, and the doctors approved a midazolam increase to help with the crying spells in the evening. Brodie enjoyed some fun family time using his patch/glasses, and seems to be settling into the routine (although he refused to wear the glasses out of the house today). Better yet, Brodie shocked me by pulling out his glasses and patch for Grandpa Neufeld today, and they are sitting together enjoying a book right now. So special.

Home!

Hope came home yesterday, and is doing fairly well. I'm still rather sick (okay, very sick), so I didn't manage to get to the computer yesterday.

Hope seems to be tolerating her feeds if we go very slow. She continues to have her bad evenings and because of the increase in seizure activity, she does vomitt. This morning she seems well, with a couple tiny smiles and some coo's.

One more night

Thank you so much for all the comments and well wishes. Hope is doing quite well, as far as I know. I'm home sick with some sort of horrible flu. Alex is at the hospital with Hope. They've decided to keep her one more night. She's in a monitored bed, which means the nurse is in the room watching two children only, and Hope is never left alone. This gives us some peace of mind, knowing that seizures, vomitting or apnea (not breathing) will be dealt with promptly. I would write more, but it's taken all of my energy to do this.

Love to all...

Surgery Day

Here we are on our way to the hospital...
And here is Hope is her yellow hospital gown, waiting to go to the OR...

The surgery went just fine...And now, we see Hope in recovery room...

And then we moved to a monitored bed on CK3, where she still managed to have oodles of seizures and even had her crying episode right on time.

We did see some cute little smiles though. And because there was no room for us, we decided to come home tonight and sleep. We'll be right back in the morning to see you Hopey!

Thanks to everyone who sent well wishes and thoughts. Much appreciated.

Better Day

Check this out! We found a way to keep the soother in, without overstimulating her by holding her too much. Alex laughed rather hard, and Brodie just stared at her and asked, "what is that?". It actually worked rather well this evening. So far no screaming, but I'm not holding my breath. The nice little touque/neck warmer was made for Brodie by my friend Julie's Mom. Brodie doesn't remember wearing it.

Hope had a much better day today. We're still on schedule for tommorrow, but they bumped our surgery time up to 12:30pm. That works for us. She'll be assessed in the morning to see how her lungs sound, and if this is the best time for surgery.

Bad Day

It's 10p.m. and I would say that Hope had a very bad day. This afternoon she started having violent seizures that shook her whole body, followed by twitching, and then more seizures on and off. We gave her the Midazolam, which didn't help. She eventually calmed down to her normal amount of seizures, but looked so pale. Then she started her screaming/seizing episode around 7p.m. again. It's rather predictable, but surprising she started into it with the midazolam on board.

Even now, she's barely sleeping, we can see her eyes fluttering. I think she just has so many little spasms that keep waking her up.

I'm having ongoing issues with Neurology, trying to get an increase in the Midazolam. I spoke with the Palliative Care team today, and they are going to help me with this issue. I also spoke with the case coordinator, who is also going to speak with the doctor. I'm getting a lot of support from everyone, except Neurology.

Too much time on the phone today, when I could have been cuddling Hope. Hey, I should get one of those cute little ear pieces, so I can walk around with the phone tied to my head!

We're off to pre-admission clinic tommorrow, but I kind of doubt that they'll be able to do the surgery with her so sick. We'll see.

Bad evenings...Good Mornings.

Hope is still having her little episodes every evening (multiple seizures with crying/screaming in between). The increases in Midazolam and Clonazepam have been useless. But I'll worry about that later, right now we're getting ready for pre-admit clinic tommorrow and surgery on Thursday (for her feeding tube). I don't remember the last time she was able to take a bottle, and she tries to suck on the soother, but usually doesn't have much luck with that either. I just realized when I was trying to take this photo that I don't remember the last time I saw her big smiles either. But then again, my memory is very, very poor these days. I only know what's going on today...it works for me.

So the mornings are good and the evenings are not so great. Ashley still surprises us with lovely smiles, and moans when she wants to be cuddled. Brodie won't let me talk about him on the blog, so I won't say anything at all about patches or glasses!

Have a great day everyone!

Uneventful...

We had a lovely, uneventful day at home. We enjoyed having Alex home, and didn't even mind watching football all day! Hope had a good evening last evening (no crying) and so far this evening, she's full of happy coo's. Nice to hear.

Happy girls

I like this photo, it looks like the girls are having a conversation.

The girls had a good day today so far. It's only 6:20p.m., so the interesting part of the night is yet to come. But for now we're enjoying some smiles and cuddles. Looking forward to having Alex home tommorrow.

Hugs

Here's Brodie, surprising Ashley with a hug. He wore his glasses on and off today, not to school, because there was no school today (good thing to be aware of!). The first time he tried the patch, was a traumatic experience. He wanted more computer time and agreed to wear his patch and glasses to get it. Once he was all set up, he looked at the computer, then looked back at me with the saddest, pleading look and said, "But Mommy, I can't see!". It broke my heart. My initial thought...I am NOT doing this to him!!!

The conversation that followed was so sad. I think it was a real shock to him that he can hardly see out of that eye, and even worse that he's expected to rely on that limited vision for a good part of the day. I still don't agree with this therapy. Why does he need two eyes anyway, he's perfectly fine with one.

Now that I've ranted a bit. Ashley was smiley and cuddley today. Hope was great until about 7:30pm, then she started her crying/screaming/seizing part of the day. Completely, inconsolable, she settled around 9pm.

It can feel a little hopeless when one can not do anything for their child.

Crying

When Hope starts crying in the evening, there is just no stopping her. I think I just need to give up on trying to console her, it's impossible. She was having so many seizures, and crying so much, I decided to try the midazolam again. Did it help? NO! Not only did it not help with the seizures, she didn't even get drowsy. She just kept on screaming for another hour. Eventually, she started calming down on her own, and now (at 10pm), I can hear her in her bed making little 'ahhwooo' noises, that sound suspiciously happy. Interesting.

As you see in the photo above, we had a day in the vehicle, going to appointments. Brodie and I picked up our new glasses, and Brodie did very well. He didn't fuss at all about wearing them, but he won't let me take a picture yet. He's going to wear them to school tommorrow, at least that's what we discussed and planned. I'll be surprised if he actually leaves the house with them on his face. It worked out rather well that my glasses broke last week, and I was choosing new glasses at the same time as him. Now he thinks it's a competition to see who is cuter! He is, of course.

You can see Ashley in this photo, all bundled up in a fantastic snowsuit that was made for her. It was made nice and warm, with zippers down both legs, and a blanket to go with it. We have so much trouble keeping her warm, this is just perfect. Thank you so much to Sheila in Haywood, you have blessed us.

4 days to go...

Four more days until Alex gets home. We're fine of course, just a little tired. I think I'll make my 'To Do' list shorter for the next couple days. Tommorrow we pick up Brodie's new eye glasses and start with the patches. We also take Hope to see Dr. Connor for the pre-op check-up. Only five appointments this week (not including my three appointments)... not bad.

Hope was a little 'out-of-it' today, but generally fine. No vomitting, but completely unable to take a bottle, and still having multiple seizures. We did hear some wonderful 'coos' when we were at the chiropractor today.

Brodie had a treat and was able to go watch Aunty Deanna's soccor game. I love it when he gets some entertainment out of the house.

Ashley had a beautiful day, with wonderful smiles. She is doing very well right now.

Happy Dance

Brodie finally gave me permission to post this video. He loves dancing around the house to whatever music we have chosen for that day. This time he helped Ashley dance too. You'll see her in her "Stander" which was made for her at RCC (Rehab Centre for Children - our favorite place). The 'stander' helps with bone density(wouldn't it be awful if her leg broke while I was trying to yank her pants on???!!!) and helps her hip joints so that she isn't at risk for hip dislocation.

It was good that we got an early start to the day because Hope decided to start 'upchucking' her stomach contents again. She's coughing today, and crying a bit with teething. Poor thing had a rough day. Too many seizures to count.

Snack Time

Another little tidbit about our house. When Brodie gets home from school it's snack time and cuddle time on the couch. I have the snack ready and the girls ready, and he drops his stuff as he runs in the door, to see what the snack is. Then we watch T.V. for a bit. If I'm lucky, I get to have a cup of coffee as I enjoy my snuggles with the girls.

Today, as I held Hope during "snack time", I noticed the increased frequency, duration and intensity of her seizures. The little jerks are becoming more 'violent' and the whole body convulsions happened three times, followed by about 4 minutes of rhythmic spasms. It feels awful when I'm holding her, but after... she always smiles at me. So cute. Right now, I can hear her in her room making little 'hoo' noises (it's 9:45 p.m.). She sounds like an owl!

I had an interesting evening out today. Miranda (our respite worker) was here so that I could join a friend for coffee (I get lonely when Alex is gone). While we were enjoying some good conversation, I got a call from Miranda. Ashley's G-tube had fallen out!!! Just like that. Crazy things always happen when I leave.

Luckily, Miranda is not afraid of anything around here (her initiation during one of her first shifts was to send Hope off in an ambulance, after finding her seizing in her bed). Miranda was able to insert a new G-tube on her own, while I talked her through it over the phone. Yeah for me, I got to finish my coffee. Perhaps the caffeine is the reason I'm writing so much!!!

On our own

We're on our own for a week. Alex is off to Regina for work. I've got so much help booked, that we'll be more than fine. We'll just miss 'play-time with Daddy', as Brodie likes to call it. Brodie likes to copy me, so lately he's been making a 'To Do' List. It often looks like this:

Today for Brodie:

Playtime with Daddy

Playtime with Mommy

Playtime with Hope & Ashley

Play with Lego

We managed church on our own today, with the help of some friends. It's been a good day. Hope still smiles and seizes. Ashley too.

More cuddles

We've gotten into the habit of eating supper on the couch with the kids (easier to hold them). Today after supper, Brodie decided it was his turn to cuddle the girls. He told me I was allowed to post this photo on the blog!

Hope is still having a lot of seizures, she rarely takes a bottle by mouth now, but she's not vomitting. Ashley was very smiley today.

Cuddles

Alex enjoyed some cuddles with Ashley after work, and Brodie jumped in when I pulled out the camera. He likes to be in on the action.

We have a surgery date for Hope to get her G-tube on December 4th. She'll likely be admitted for a day or two. We'll see how she tolerates the surgery. Ashley vomitted so much after her G-tube placement, that she had to have overnight feeds using a pump. Hope pulls out her NG so often, that it will be nice to have it gone.

new seizure

Hope's favorite thing to do is snuggle into the bean bag chair and fall asleep sucking on her soother. She looked so cute in their, I thought I better share the photo.

It was sad to see her start having a more 'intense' looking seizure today. In the evenings, she is always a little worse. This evening I was lucky enough to have some time to hold her and noticed the increased frequency of seizures and a new seizure that shook her whole body, and scared me a little. She doesn't like these seizures much, and cries more. I gave her some midazolam, when the seizures started to make her cry, but it didn't even phase her this time. I think she's developed a tolerence to the 'rescue meds'. We'll probably have to ask for an increased dose.

Ashley had a great day - some smiles, some seizures and a good nap. The other day, we had her fitted for some new hand splints. Normally these hand splints are funded every two years, but Ashley grew fast. Her hand is one inch 'fatter' than last year. I'm guessing that it's mostly swelling, but who knows. Her hands and arms are rather puffy. Don't ask me why, because I don't know. It's just the way it is.

Have a great day!

Fun times

We had some fun this week with my cousin and her girls. Brodie asked me when the cute little girls were coming back. Ashley enjoyed the noise of the kids and Hope had some cute smiles.

This morning Hope smiled all through church and Ashley did her usual moans and then smiled during the singing. Very cute.

Now we're home, the girls are in bed, Alex is making lunch and we're all getting ready to watch some football. It's great to be home.

Last Sunday

This was nap time for Hope and Alex, last Sunday. I thought it was pretty cute and then forgot all about it, till today. Sleeping babies are so peaceful.

Hope had another day full of seizure activity. I'm not sure how much she slept last night because we put her to bed awake and seizing, and she was still having seizures in the morning. I can hear her still right now, hopefully she gets a good night sleep tonight.

Sad crying...

Hope has had a hard evening. Too many scary seizures, causing her to cry/scream and cry some more. The drugs have not helped this time it seems. The intense crying lasted for about three hours despite the extra meds. Occasionally we would be able to console her with cuddling and soother, only to have another seizure start a new crying spell. Very hard to watch.

Now, she's in her bed making little sad noises, but not crying. Hopefully she falls asleep.

Ashley had a lovely day, with some little smiles.

Smiles

We are still blessed with smiles and coo's each day. Hope is doing well, despite the seizure activity that continues. I guess my idea of 'doing well' has changed a bit. My perception is that things seem a little more stable right now because we've gotten used to the seizure activity and Hope's decreased movement on the left side.

Now we're focusing on more chronic issues, like positioning. Hope has a strong preference to keep her head and eyes to the right. It doesn't matter how many times I reposition her head, she shifts it right back. I'm trying to avoid the flattening of her head on that preferred spot, like Ashley has. Ashley has a strong preference to turn her head to the left, which eventually left her with a flat spot on the back of her head, making it difficult to position her head in any other way.

It's kind of fun, because I'll turn her head to the left, and she'll smile and turn it right back the way she likes it. Little munchkin!

Hockey?

Ashley's cheering on Brodie while he plays 'mini hockey' against Daddy. Brodie gives Ashley a 'fist pump' whenever he scores, and of course, Ashley gives him a little smile back. This little hockey game was Brodie's first purchase from a garage sale (he used his own tooney).

Hope had a good day again today. Smiles and coo's, and she drank one bottle today. No vomitting, occasional brief seizures. It was a great day.

Fun with Cousins

Hope is checking out her cousin, Ian (my sister, Kyla's little guy) in this photo. We had our first gathering in the new house, and I would say that it worked quite well. The cousins had fun riding 'cars' in the basement, actually named 'funtown' by Brodie, and us adults enjoyed some food, visiting and baby cuddling.

Ashley came back with Grandma and Grandpa, ready to join in the fun. Hope and a great day, she really seems to be holding on to this 'good spell'. She is just full of smiles and coo's, I love it. Brodie had so much fun playing with his cousins.

Lazy morning?

Brodie decided we needed to have a 'lazy morning'. I was curious what that meant, and was pleasantly surprised to find that it meant playing by himself and reading his lego magazine, in his PJ.s of course. He really makes life easy for me sometimes.

By the way, I changed the settings on the blog, so everyone could comment. I didn't realize that I had restrictions on comments, and certainly don't want to restrict comments. Comments are what keep me going here. I love to hear from everyone, thank you so much for the support.

Brodie's eyesight

We finished up some appointments last week regarding Brodie's eye, and it looks like we'll be going ahead with treatment starting in the middle of November. Brodie has amblyopia or 'lazy eye', and basically we have to strengthen the weak eye. His left eye has 20/20 vision, but his right eye can only read the biggest 'E' on the chart with a very strong lense to assist. Usually treatment is recommended BEFORE the age of 5, but recent studies show that it's worth attempting treatment even up to the age of 17 years old.

We're not sure that treatment will help much (according to the first optomotrist), and I'm not sure that I have the time/energy to enforce the plan, but we'll give it a try. Sighhh..... It means patching the good eye when he's not in school and wearing a strong lens on the weak eye (and if anyone tells me that this should be easy, they better get themselves over here to convince him to wear the silly patch). I'm not sure how my independent little guy is supposed to get himself breakfast when his only eye has a patch on it, in fact I'm not anticipating much fun in this adventure at all.

We'll probably figure it out just fine, and this will fade into the background with all the other 'bumps' we've encountered. So, for now, I'm not going to worry about, or even think about the work ahead with Brodie. It doesn't do any good to focus on how busy I'm going to be, so perhaps some of you could help me out with a few prayers in that direction.

Happy Hope

Hope has had a wonderful day, full of smiles and coo's (yes, seizures too). It's so fun to watch her try to pull out her tube that I had to post a little video. It's 9:15p.m right now and I can hear her in her bed. She's making some very joyful noises, and somehow Brodie is sleeping through it. For those of you who would not know, Brodie was 'lonely' in his room, so we moved Hope in and now he's happy. His room was hardly used during the first two months we lived here, because he always slept with the girls. Too cute.

Lotsa Treats

Halloween was a success in Brodie's opinion. He counted his treats today, and the total came to 140. Then he divided his treats into two piles. One for himself and one to give away. I was surprised that he was so generous, almost half his treats went into the pile to give away (I wanted to sneak some back into my own private stash, but I restrained myself).

His school sends the 'unwanted' treats to a local Dentist office, which then donates $2 per pound of candy to Unicef. I'm not sure what they do with all the candy, somebody said they might send it to a shelter in the city.

Hope had a lovely weekend. We saw some nice smiles and enjoyed some little coo's in between seizures. Her smiles are lopsided, her movements are very spastic and she has a strong right sided preference (head and eyes constantly to the right), but at least she's out of the 'comatose' phase that we were treated to last week. I hope she gets a little closer to her 'normal' self still.

Happy day

We had a very happy day with Hope today. She gave us so many smiles, and surprised us with some wonderful 'coos'. It's a first in many days.

Ashley is at the farm with Grandma Neufeld, having some fun. Brodie is a little jealous!

We visited two more doctors this week about Brodie's eyesight. The opinion is that his vision can be improved and we absolutely should try the treatment to see what benefit could be had. And Dr. Connor felt that we should bring Brodie to an opthamologist as well. So that's the plan. More appt's and start treatment in November. Hopefully, something amazing happens to make it possible for me to handle the increased workload.

Hopefully, Brodie will let me take take a photo of him tonight, and we'll share some Halloween fun with everyone.

Happy treat eating everyone!

Hanging Out

We're just hanging out tonight, watching a bit of news after supper. Hope hasn't had a great day. Ashley is doing well, and Brodie is enjoying school. Hope continues to have almost constant seizure activity, she only came out of it once to try and have a bottle. Other than that, we just feed her with the tube in her nose. We see Dr. Booth tommorrow (the neurologist).

On Friday we took Brodie to the eye doctor for the first time. We found out that he has minimal sight in his right eye, and that treatment would probably not help much. This news was rather hard to take, and we're still thinking about it. We have a couple extra appointments this week, to discuss treatment. We are seeing a second doctor for another opinion about the benefit of treatment. If treatment is not going to offer very much improvement, then doing nothing is a reasonable option. He has obviousely adjusted very well to life with one eye, because we did not suspect a problem.

Grab the camera

We grab the camera when we see smiles from Hope now. It's infrequent, but creates a beautiful moment of the day. Last evening was a rough one for Hope. She didn't stop seizing to drink her bottles like she normally does, so we went back to the NG and gave her some 'rescue meds'. She was vomitting a lot and looking a little blue at times. But she woke up hungry and drank her bottle before starting her seizure marathon for today. As you can see from the photo, she still has a bit of left sided paralysis, but it is slowly resolving.

Car rides are good

Here we are on the way to church this morning. It seems that Hope still likes the car motion. She stops crying and starts smiling as soon as we start driving. Just little soft smiles, but we still appreciate them.

Poor Hope

Poor Hope! She hardly gets a rest from the seizures. It's so sad to see her looking like this most of the day, mostly limp, with her head slightly tilted and drooling a bit. When her eyes are fixed to the right, she's seizing (as we discovered during the 5 hour EEG). She does this most of the day. Although she still manages to come out of it, to drink her bottles and tell us she's hungry. We see the shadow of a smile every now and then. I miss her real smiles and coo's, but enjoy the snuggles.

No change

Hope is still seizing but having cute little smiles in between. She frequently pulls out her NG and we try to leave it out as much as possible. She guzzles her bottles in the morning, has a good nap and then progressively gets worse throughout the evening (ie. more seizures, ineffective sucking and the occasional vomitting episode). We like the mornings.