All is well...

All is well here.  Brodie is enjoying school and we've finally set a date for his birthday party which was post-poned due to Ashley's illness, Hope's illness, Ashley's funeral, Hope's continued deterioration ect.  It's been a tough run, and now it's time to attempt to climb out of the pit again (ie. pretend this is our new normal and hope it lasts).  So, I set a date for Brodie's birthday party (a small party) and Alex laughed at me.  "Jolene, you know what happens when you make plans...".  Yes, yes, yes....I know, but Brodie deserves a party and I finally have the energy to make it happen.  He's been a very patient little boy!

Hope is still having very intense seizures, lasting up to 10 minutes.  She has 7 - 15 per day, but she still has smiley comfortable periods in between and doesn't appear distressed at all.  I can't sit her up very long because she has trouble with her secretions still, but she sure does smile when we put Mira on the floor in front of her to play.

Mira is having fun chewing on her big toes when she gets her socks off.  Too cute!

Waiting for warmer days...

We've been enjoying the bits of sunshine around here, but will definitley appreciate some warmer days.  When I have a warm afternoon I can take Hope outside for a bit, and it's nice to give her a change from the couch.  She's still having a LOT of seizures.  Yesterday she had seizures every 5-10minutes for a couple hours and that was hard to see.  She eventually went to sleep.  No vomitting though.

Enjoying the rain

What a lovely day!  I know some of you may not agree, but I love a nice gentle rain.  I brought my girls outside on the deck to enjoy the fresh air and the sound of the rain.  Hope has had some pretty good days.  We can't do a lot with her, because she doesn't tolerate sitting up for very long.  She's having a lot of seizures and frequently turns blue, just around her lips, during the seizure.  Hope smiled a lot this afternoon while we were outside.  I think she liked watching Mira.



Mira has learned how to clap her hands, and she gets pretty excited about it.  Actually, we get pretty excited about it too!  I'm still surprised at how much happy emotion I feel when I see her clapping her hands with enthusiasm and squeals.  It's overwhelming to see these little milesones that we never dreamed we would experience again.

Okay today.

Hope seems okay today.  She's still having some pretty big seizures that put her to sleep and her breathing worries me at times, but she's still smiling and responding to us.  So, maybe she's fine.  Seriousely, I am just telling you what I see, and I am not going to give any predictions or timelines.  I am so tired of trying to guess at what's happening.  Right now, she is fine and that's good enough.  Day by day, is all we can do.

Mira and Brodie are doing great.  The best part of the day is when we can all sit outside and enjoy some fresh air.

Strong girl!

Hope you are such a strong, little girl!!! 

This morning, Hope has given me some little smiles in between the seizures and coughing.  Her eyes get drowsy often, and I think she did get some sleep last night.  Alex was up checking on her a lot, last night and said that she was sleeping until the seizures started closer to morning. 

After the scare we had yesterday, I am very surprised to see her doing so well today.  Her color is good, and her breathing is steady, although she's still coughing up a LOT of foamy, white stuff, and occasionally some thick, yellow stuff.  But, NO FEVER!  The fevers scare me, because Ashley's downhill slide involved fevers which she had never had before.  Hope is the same, and I can't remember her with a fever before this.  We are still probably looking at a grim picture right now, but like Ashley, we won't know how many dips there will be, until the end.  So, cuddle time has become a priority.

Thank you, again, for the supportive emails and comments.  I did notice that something happened to some of the previous comments (they disappeared), and I have no idea what went wrong.  But don't worry, I did get to read them. 

update

Just a quick update.  Hope's fever finally came down, and her mottled skin has turned pink again.  She's fallen asleep and is breathing nice and even, at a good rate.  Yep, she looks lovely...go figure!  This feels like one of those really big roller coasters.  You never know what's around the corner.

Sliding downhill

Yesterday, I sat down at the computer a few times and meant to update the blog, but I was distracted from the task each time.  I wish I had made it happen yesterday, because today is not so great.

Hope was doing well.  We were able to bring her to church with us on Sunday, and I had some nice cuddles with her during the week.  The weekend was fantastic.  We enjoyed the warm weather and started a project.  I even put a summer dress on Mira...

The last couple evenings, Hope has been crying.  Such sad, sad cries, with great, big tears, and then she falls asleep.  This morning she had a big seizure and then started shivering/shaking.  She was cold to the touch, and she had goosebumps, so we covered her up.  But the shivering got worse and she started looking mottled, so I checked her temperature.  Not good.  She has a temp of 104 degrees Farenheit.  I gave tylenol and got rid of the blankets.  We're turning her every 30 minutes and using a cool cloth on her forhead.  Yes, I do have help today, and I've called Alex home. 

Right now, it is 11am, and she is not looking mottled anymore, and her skin is nice and pink.  But the tylenol has not helped, and her temp is still 104 degrees.  Her breathing is a little laboured and fast, and she has yellow, thick sputum (which some of you may not care about, but my nurse friends will be desperate for details).  I would guess that she has a pneumonia.  I will not guess if she can get through this.

Whatever happens in the next little while, you can pray for us.  Either way, this is hard.

Better

Hope is looking good again.  She's still coughing up a lot of yellow secretions and that's a good thing.  I was able to hold her on the deck and listen to the rain, which was great because I was having a 'crying' day.  You may get tired of reading up the 'ups and downs' that Hope endures.  Perhaps you even have a moment of thinking "Oh bother, here we go again".  I sometimes consider leaving it off the blog, but then decide that most people are supporting me through the ups and downs and don't mind hearing about it.  Despite the fact that her vomitting episodes are familiar, they still bring on the same feelings of hopelessness and painful helplessness each time. 

Now that they are coming so often, I'm not finding the time to deal the emotions involved.  Apparently I am a little 'slow' when it comes to processing these emotions, because I always function well in the crisis.  Then I have a couple angry/sad/disgusted/grouchy days about a week after the event.  You may have noticed that I don't broadcast these days on the blog...te he!  I'm sure you can imagine how well this works for me, with the vomitting episodes happening every couple weeks.  I'm rather glad that I have come to the conclusion that I am allowed to be sad, and that I can still function while I'm sad.  I just slow down, play some music and remind myself to put away 'the list'.  I've decided that being sad is just fine, and if I try to avoid it, then I get angry.  It's OKAY to be sad and yes, it always passes.  How could it not, when I have little cuties all over the house...

Coughing and awake

Hope coughed up some thick, yellow stuff this morning.  I'll take that as a good sign.  She's also very quick to open her eyes when I turn her...and she's still having seizures and wet diapers.  All good signs (even the seizures), which leave me to believe that she's not dying right now, not today.

Hmmm

Well, I honestly can't say for sure, which direction Hope is going.  She has stopped vomitting now, but is very pale, with breathing that changes from slow and shallow, to fast and 'shivery'.  Her lips were pale this morning, almost white, and it bothered me so much.  It was just too similar to Ashley.  Right now, she has pinked up a little and her eyes are open, but she's very, very tired.  So, we will continue to love and pray, as we wait.

Yesterday was Brodie's First Communion, and we are very proud of him.  It was a lovely ceremony and we had a small celebration afterward, at our house.

I'm glad we were able to make the day special for him.  At the end of the day, I was a bottle of emotions, just ready to explode.   All I really wanted to do all day, was sit and hold Hopey...so, that's what I'm doing today.

and NOT so well...

This is becoming a rather annoying pattern.  First, I post a blog that Hope is doing well, and then 'oops', she's puking again.  She started vomitting today at 1:30pm and hasn't stopped.  The seizures have been really bad for the last couple days, and I figured this was coming.  Although I had hoped we would have a few more days of smiles.  Poor girl.

On a different thought.  Here's a photo of the kids and myself in 2008, when Hope was 7 months old...

and then you'll see me holding Mira (7 months old), just as she was waking up the other day...



and Mira with her Godmother, Miranda...



So, there you have it.  I keep getting comments about Mira looking so different from my other kids, and I keep saying that she looks like Hopey!  Can you see it?

Doing well...

Hope is better and full of smiles.  You should see how excited she gets when we have 'playtime'.  Playtime is her stretches and excercises, which she loves.  She's responded well to the diazepam and isn't quite as stiff, but her increased tone has made it obvious that she's changing.  Her feet are so twisted now that I can't put her in the stander, or put shoes on her feet.  We have to decide if we're going to make special splints for her feet, so that we can continue to use the stander.  The stander isn't a necessity, so I'm not sure that I'm going to bother with it.  It is nice to have an alternate position for Hope in the stander though...and it's so good for her lungs when she's standing upright.

Brodie is still fabulous with Hope and Mira.  You can see Brodie and Savannah (our baby-loving neighbour), in the photo below, with Mira.  Lately I've been making good use of Mira's "slappy hands".  I sit at the piano with her and let her slap to her hearts content.  She loves it!!!