Happy Day

Hope woke up full of happy energy today. She had some good strong coughs, drank her bottle and has been smiling and making happy squeals all morning. So fun.

Smiley Hope

What beautiful smiles we were gifted with today. She even had some lovely little 'coos' to go with it. So far today she has kept all her formula and meds in her tummy. Good job, 'Hopey'.

In the Past with Ashley

A little info for those of you who didn't know Ashley when she was younger. Ashley became palliative care at 6 months old, right around the time this photo was taken. She was having uncontrolled seizures that would last for days at a time, and was no longer able to eat from a bottle at all. She stopped smiling, and was limp with very little response from what I remember. She would have fevers, high heart rates, high respiratory rates, vomitting and swelling, but she always got through it. This lasted from Aug/05 to mid Dec/05, then we started seeing smiles again, despite the seizures. It's amazing what such a little body can handle.

More of the same

Hope did very well taking her bottle today, and didn't throw up even. I thought she was doing so well, that I removed the NG tube. Then she threw up all her formula and meds for the evening! "Fooled you, Mom". The seizures continue, and in the evenings the seizure activity outweighs the normal activity. Rather depressing, I prefer smiles and happy coo's (which we haven't heard in a long time). I'm having flashbacks to Ashley, when she was all limp and unresponsive for days at a time because of the seizures/meds and the general deteriorating state. I'ld rather not see that happen again.

Still more seizues

This is the third evening in a row, that we've sat with Hope timing seizures and giving ativan to stop them. It last about two hours each evening. During the day she looked pretty good today. She was good and hungry today, and kept everything down. She even had a few strong coughs, hopefully she'll clear her lungs. She's sleeping now. Brodie wanted to cuddle with 'Hopey' before bed, so he climbed in where I was sitting with her and held her hand. He's such a good, big-brother.

Few Smiles

This is one of the few smiles we were blessed with today. Hope is still having a lot of trouble with seizures (she required more rescue meds tonight), coughing and vomitting. We're hoping she starts doing better soon.

Not so good.

Hope is one day old in this photo, on her way home from the hospital.

Hope isn't looking so well tonight. She hasn't kept down any food today, even with using the NG. I took her in to see the doctor and her urine sample still has 'pus' in it, so she's back on the antibiotics. The other thing is her lungs, they don't sound so good, so we're keeping her on the antibiotics for that also. She's been very lethargic today, not too smiley and pretty weak (not surprising). We hope tommorrow is a better day.

More Seizures

Those little seizures became a 'little' problem today. They just kept coming, one after the other and she couldn't drink her bottle. The first ativan (rescue medication for seizures) didn't work, so we called for permission to give the second dose, gave it and now she's got droopy eyes but at least the seizures have stopped for now. No doubt she is having trouble because of her cough that continues (and the vomitting). So, she never did get her formula and meds down, which means I had to put an NG tube down again to get everything into her stomach (the tube goes into her nose, down the back of her throat and into her stomach). Good thing we decided not to go anywhere.

No fun!

It looks like no fun for us this weekend. We've cancelled the little trip we had planned. Hope is having 1-2 seizures an hour (little one's), and she's coughing and vomitting frequently (every 10-20 minutes when awake). All we know for sure is that she's sick. Perhaps it's just a little 'blip' but we can't leave knowing that she could get worse (and it's not fair to leave Aunty D with that uncertainty). We'll enjoy a nice relaxing weekend at home.

Ashley smiles

Nothing too exciting here. Hope seems to be back into her normal routine, doing a little better with the bottle, and sleeping well at night. She still has a bunch of little seizures throughout the day, hardly worth noticing.

Ashley is full of smiles in her new chair, it is so fun to see. I think it pushes her head forward so that she can see us instead of the ceiling, and it seems like she smiles at us. Too fun.

Sunday, Sept. 21

It is so wonderful to read everyone's comments and be able to share with you how things are going. Thank you to everyone who has blessed us with their support, because it truly is a blessing. Hope is doing fairly well, and it's just great to have her home and smiling. She still has multiple small seizures but nothing to major and she's still eating well from her bottle, and crying when she's hungry. Ashley is amazingly calm and almost happy these days. Perhaps the Gabapentin is helping, but the best part is the wheelchair. She is so happy and comfortable in that chair, we even catch her smiling at times!!! We were lucky to get funding for that chair according to some. Their is a trucking company we'll have to thank, apparently they raised some money through a golf tournament and donated the money to Rehab Centre for Children, which was then able to fund Ashley's wheelchair.

New Wheels for Ashley

Ashley has her first wheelchair and, yes, I am quite excited about this. She sits up so nice and straight in it, and it helps her look forward instead of upward. The best part is that she doesn't cry when she's in it. It's an odd sort of milestone but we'll take it (considering we didn't think she would get to this point).

Hope had a bunch of little staring seizures today and then had some vomitting issues around supper. By bedtime she was back to her smiling self.

Jump on Daddy!

Brodie jumped on Daddy and Hope decided to join in, so I made them pause in their play to snap a photo. Hope had a great day today, with a lot of smiles for Grandma Allen.

2 hours to drink a bottle!

Well, Hope is very patient and can savour her medicine colored formula for about two hours. Unfortunately, Mommy is not so patient and has decided that new methods be found. We managed to get her propped up perfectly, with the bottle in the proper position, and 'voila', she fed herself while we made supper, ate supper, cleaned up supper and then finally we held her for the last part of the bottle. She still has a whole bunch of little seizures but nothing too crazy.

Ashley is back home from her weekend away, and she's been very good. Apparently, she's been fairly calm with only a few episodes of moaning. In this photo, Ashley and Hope are trying out their new 'wheels'. We finally found a double stroller that might work for the two of them, until Ashley grows out of it anyway.

Alex is back to work tommorrow, so I guess it's back to 'normal' around here.

Brodie on the Bus

Despite Brodie's shyness about my talking about him, I'm going to show you how he looked on Friday for his first day taking the school bus. He's loving Kindergarten, and remembers to kiss the girls as soon as he gets home. Hope gave him a lot of smiles and coo's this morning before school. It's great to see him go and do something just for him. When we met the teacher before class on the first day, she was asking about his siblings, and I explained about the girls. Brodie spoke up when I mentioned Hope in the hospital, "Yep, she might die, or she might not."!!!

Teething

Last evening Hope showed off her lungs and cried a lot. We think she is teething. She's still having some little seizures here and there that we've begun to get used to. Of course, the teething places more stress on her system and more seizures occur, too bad about those teeth.

It's still a little stressful trying to figure out which seizures to treat and which ones to ignore. We give ativan if she has too long of a seizure or too many in an hour, but sometimes it's hard to tell if she's having seizures or just doing some wierd neurological stuff. Anyway, I'm rambling. She's having a great morning, and we were happy to show her off at church this am. With all the prayers going up for Hope, I'm sure God can't help but listen. We're still praying for her comfort, whether she finds it here or in heaven - God knows best.

New Day

Hope slept well last night. She woke up hungry and drank her bottle and meds with no difficulty (I had to insert an NG tube last night to give her the meds and some food because she was unable to suck effectively). It was a nice morning with some smiles and now she's having a nap. Ashley is at her 'respite' weekend and Brodie is going to play with Joshua for the afternoon, so we get to relax a bit.

More Seizures

It was a great day until about 5pm. The rest of the evening was spent watching Hope have multiple seizures, giving her ativan to try and stop them, and trying to describe them to the doctor on-call (so we could have permission to give her more Ativan to try and stop the seizures). At least she kept breathing.

Friday, Sept. 12th

Hope slept in her own bed last night, what a treat. We haven't noticed any seizures yet, and she's looking great. So fun to cuddle her. Brodie is showering her with love.

First Day Home

Hope had a very good first day home. It was very easy to think we could just get back to normal and forget about the last week. She drank her bottles and took her medicine and now she's in her bed. She had a lot of smiles and coo's. As you can see in this photo, she still appears to have some problem moving the left side of her face, but it doesn't stop her from smiling. Perhaps this is why she's having more trouble with her bottle.

Home

We were able to bring Hope home today, not because she's better but because there is not a lot anyone can do for her. Trying to keep Hope's best interest in mind, we decided she would be happier at home with no tubes, no poking and no beeping monitors. She may die, or she may not (in Brodie's words), but at least we'll all be together. We decided against monitors and oxygen at home because that would change the focus. It's more important to us to keep our home full of peace and allow Hope to go when it's her time. Her condition is not one that can be fixed and it will continue to progress, so we'll keep her comfortable and happy.

Thank you so much to everyone who has called, emailed and left comments. It doesn't matter if you find the 'right' words, it just means a lot to know that people care. We'll still post updates, but probably not as frequently. Visitors are welcome, we won't be leaving home for a while.

Smiles

Hope slept till about 3:30pm after her seizure this morning. She woke up with smiles for Aunty Deanna. She tried to drink her bottle but was too weak so we ended up feeding her through the tube in her nose (NG tube). Then she went back to sleep. She was sleeping when we left her.

This sounds like a play-by-play account!!! Oh well, we're sleepy too.

Wed. Sept. 10, 2008

We just got word this morning that Hope had a 35 min. seizure at around 8:00am. They gave her some confort meds which knocked her out. She is going for a renal ultrasound at 1:00pm to see if there is anything suspicious with her bladder etc. We will be staying overnight again as Neurology would like to monitor the ongoing seizures. We are ready to bring her home and let things play out. Big brother Brodie was on hand to visit her before heading off to Kindergarten!

Ambulance ride on Friday

Just a bit of info for those who don't know. We found Hope in her bed having a seizure on Friday morning, called the ambulance after a while and by the time the meds were effective, she had been seizing for 2 1/2 hours, followed by 35 minutes of not breathing due to the effects of the emergency meds. She was 'bagged'(air was forced into her lungs with a bag and mask) during that time but not intubated (no tube down her throat). Since then she's taken a while to wake up, had some subsequent 'non-breathing' episodes, and shown some left sided paralysis, which appears to be resolving. EEG (brain wave scan) shows constant epileptic activity with more seizures on top of that. The doctors still hope to get the seizures to stop. We just want to go home and cuddle her without the tubes.

Hope's first hospital admission

It's Tuesday and I'm not going to be able to return all the phone calls, and I do appreciate the support. So, I'll give a little update and hopefully fill in the blanks a little later.

Hope had a wonderful morning. She smiled a lot, moved her arms around and downed a few bottles of formula (the first since last Thursday). She looked so good, we thought that the dismal news of impending doom was held off by a single dose of Dilantin (seizure med), but alas, she proved us wrong. She decided to go limp, stare off into space and stop breathing, eventually taking a breath every now and then, just enough to keep her going for about 45minutes. It appears that the 2 1/2hours of seizing she did on Friday has damaged her breathing centre in her brain. She did smile again for Aunty Kyla later in the evening. We're hoping she gets some sleep tonight, since she hasn't slept in about 36hours.