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.

Loving the smiles

So fun, Hope is showing her teeth again. She pulled out her NG this am and has been smiling ever since. Too cute. The seizures continue for sure but there are brief smiles and little coo's in between.

Nothing new

Nothing new here. Hope is still having seizures that are too numerous to count, still coughing and sputtering with her cold, and occasionally vomitting. Ashley is quiet and content with lovely little smiles when we hold her. Brodie is full of way too much energy, and hopefully expending it at school right now.

Brod & Ash playing

A little snapshot of 'game night' the other day. Alex does a very cute, 'little Ashley' voice as he pretends to get Ashley playing rebound with Brodie. Brodie talks right back to her, 'it's your turn, Ashley', just as if she's really playing. Very fun.

Hope has been crying, seizing or sleeping today. No smiles.

EEG yesterday

Yesterday, Hope was hooked up to the EEG machine for about five hours while I pushed a button every time I saw a seizure (and then I wrote down a description). Which means that the new plan of not paying attention to the seizures, was out the window by 0830. I was pushing that button every three minutes at least.

The purpose of the EEG was to confirm what is and what is not a seizure. The result is that she has A LOT of seizures, and I should just go back to the plan of not paying attention to them, unless she is bothered by them.

She's still very snuffly and coughing a lot. She sounds and looks pretty sick, hopefully this cold will go away soon. She's still drinking from the bottle sometimes, but I'm using the NG (tube in the nose) for meds.

Hope I have some smiles to report soon.

Seizures are the 'norm'

The seizures continue, although Hope is now eating from a bottle more consistently and we see an occasional smile. We met with the doctors and case-coordinators today to make a plan for Hope. Basically, I have to stop thinking that I have any control what-so-ever in regards to the seizures. She's going to have them and I have to stop worrying about what I'm supposed to do about it.

You may think we were already at that point. But when you see her come out of an extremely bad episode and start smiling and cooing again, one can't help but want to do more to keep her with us. Unfortunately, there isn't much to do, so it really is time to let go and let her be as she is. We're still aiming for comfort care, which still means trying to stop the seizures but I can stop charting every second, and stop wondering if we should bring her into hospital or call the doctors again. This should be a relief, but I just feel like I have to resign myself to watching her deteriorate. Not an easy thing to accept.

Happy Thanksgiving

Yeah!!! We got out of the house, to enjoy a family day at the Allen's farm. Hope was crying the entire time she was getting ready, but once she was in the van she settled and enjoyed the ride. She took her first bottle by mouth today and kept it down, so we gave her formula by bottle for the rest of the day. Very exciting. She slept most of the day and then woke up to drink another bottle and have a few brief seizures. Then she blessed us with a lovely little, lopsided smile (still paralyzed on her left side). Even more exciting.

Then we got home and she started crying shortly after. Followed by a few scary looking seizures that resulted in a dose of Midazolam (to stop the seizures). Now she's sleeping, and she looks quite peaceful again. I'ld say it was a pretty good Thanksgiving Day.

Happy Thanksgiving everyone!

Sleeping

This morning she's sleeping, snoring even! The extreme crying lasted till about 8:30pm last evening and after that it was a lower intensity on and off. I really, really, really hope this does not become the norm. Alex and I are wondering if the Midazolam had anything to do with it, because that would be the first time she's had it. But the doctor on-call last night said it shouldn't do that. Who knows, I'm just glad to see her calm and sleeping.

It just gets worse.

After a series of seizures this morning, we gave Hope some Midazolam around noon, and she went to sleep. She woke up at 5:30pm and has been crying/screaming ever since. She's absolutely inconsolable, and every few minutes she escalates the crying to a full out, terrified screaming that is horrible to hear. The only relief she's had from the crying is the brief seizures she has every 4-5 minutes. I have no idea what to do, we've given Motrin and Tylenol. The doctor says to wait it out. Never in my life have I heard a baby scream like this.

Still sleepy

Hope was awake and doing 'wierd things' last night from 7pm till 11pm, and then slept well for the night. She's been pretty drowsy this morning again, but no vomitting yet. Yeah!

We're still just giving her little bits of pedialyte at a time, no formula. She seems to tolerate that right now.

Sleeping

Hope has been sleeping most of the afternoon. The brief moments of eye opening have usually been with vomitting, but she's been keeping some fluid down for a few hours. We've been giving her 10ml of pedialyte every ten minutes in an effort to prevent dehydration.

It appears that her left side is completely paralyzed again. She has absolutely no movement of the left arm or leg, and the left side of her face doesn't move. This can be a temporary after-effect of a prolonged seizure, so we hope that it will go away again.

We're hoping that we can keep her comfortable at home this weekend. If she wakes up and is seizing again (which is likely) then we'll give Midazolam instead of Ativan, to try and stop the seizure. The pharmacy is delivering it tonight. They tried to tell me that Tuesday would be the soonest, but I convinced them that it was needed immediately. So hopefully, it gets here soon.

She's all cozy here in Grandma Lil's blanket. It came with us to the hospital and was very nice to keep her warm in.

Lethargic

Hope slept well last night after we got home from the hospital. This morning she is vomitting every few minutes and not keeping meds down. She's very lethargic and barely opening her eyes.

To ER

Hope started seizing around 4:30 p.m. and despite three doses of ativan and an extra dose of Phenobarb (directed by the doctor on call), she didn't stop. So, we took her in to Emergency to get their help. After more phenobarb and some Dilantin, her seizure stopped at 10:30 p.m. She seized for six hours with no break, it was hard to watch. We're home now, and we brought Hope home with us. We'll see what comes tomorrow morning. It's 1:20 a.m. right now, so I'll go to bed and talk more later. Thank you so much to everyone who supports us with comments and prayers and thoughts.

Not Eating

Hope decided today that eating was optional. I just couldn't get her to drink a bottle, so we're back to the NG, which she really doesn't like. Now it's 10pm and she's still awake and occasionally looks hungry but won't/can't suck from the bottle. She actually did quite well today otherwise. She only had five seizures this morning and a few more this evening. This is a huge improvement, perhaps the infections are gone and she'll do a bit better.

Ashley had some nice smiles today and enjoyed some cuddles while Brodie and I played a game of 'go fish'. This video was taken a little while ago, but I thought you might enjoy some cuteness!

Rehab for Children

We spent the afternoon at Rehab for Children today. It's our favorite place to go for a 'girly' outing. In other words, it's a great outing for me and the girls and our favorite place for appointments. They scheduled all six appointments in one day, so we could see everyone in one shot. Feeding issues, equipment reviews and orthopedic evaluations take place. It's often encouraging and rather exciting to see all the exciting things they can develop to enhance the lives of our little angels. For Ashley, they're helping me with footwear issues, she has no ankle support in her stander. For Hope, they showed me the cutest little 'walker' that she might be able to use once she outgrows the excersaucer. I can't remember if they called it a pommel or a pony, but she sits in it and has torso and head support. When she kicks with her feet she would wheel herself backward (watch out Brodie). Hope will also be scheduled for a G-tube like Ashley's. She can still eat from a bottle with it, and we'll be able to give her meds without her choking.

Both girls were perfect little angels for the day of appointments, even though it meant missing their naps. I was hoping this would mean early bedtime, but no. It's a tradition to clean up some puke every evening.

During the day, I always say that Hope is doing rather well. In the evening, she just has a hard time, and that's when it's obvious that she's not so well. I think I witnessed a new seizure this evening. It was the first time I've been scared by the look of her seizure (till now they have been subtle). Then she projectile vomitted right at me and promptly fell asleep. This is why I go to her first in the morning, I'm just not sure what I'll find.

Unsure

We're unsure of Hope today. We were told to give her an extra dose of Phenobarb on Friday to try and help the seizures, then bring her into hospital on Saturday if she didn't improve. Saturday was definitely better, but today is not. But it's really hard to tell if she's just exhausted and not responding much, or having a LOT of seizures. She's sleeping now, so my brain gets a break. I'll start assessing her again when she wakes up.

Smiles...seizures...puke and poo!

The day started out okay, with some nice smiles and some playtime with Brodie. The evenings are always bad, but we're getting used to that. The seizures are way to frequent for my liking (about 5 - 20 per hour). More decisions, more meds, everything is so uncertain.

This evening Ashley decided to bless us with a massive blow-out. She had one of her 'big seizures' and let loose her bowels. You won't want this visual, but you can stop reading if you must. There was gushy, green poo dripping out the sides of her nice new chair, creating little plops on the floor!!! As we cleaned up, I attempted some humour and laughed that the perfect top off would be for Hope to start puking in her chair. And guess what? She did just that. Then cried for the rest of the evening! I probably shouldn't get quite this detailed on a public blog, but oh well. It's just a little glimpse into our lives. Hope everyone else had a great day too!

Time in the Sun

What a beautiful day today. Brodie and I decided we needed to have a tea party on the front porch and enjoy the sun. Then Hope decided to join us and get her dose of Vit D for the day, along with Savannah (our friend from next door), who loves to hold Hope.

The evenings are consistently rough for Hope and the seizures are becoming more frequent during the day as well. The smiles still happen in between seizures, but they are noticably less. Last evening and this evening, we had to insert the NG tube to give her meds and formula. She just has back to back seizures that make it impossible for her even finish a sucking motion. She's so cute in between seizures, she just goes right back to 'eating' her fists and looking for the bottle, as if to say, 'hey, what are you waiting for', and then two seconds later she's spaced out again. We had to give her ativan during the day today, which threw the whole day for a loop. Hopefully we can get her to sleep tonight. Although, right now she's having so many seizures again, that I'll probably be giving the ativan again. I'm getting tired of making all these decisions.