Secretions

It appears that Hope's problem with the carseat is just secretions. Today I ventured out with the girls and tried the Atropine Drops that were prescribed by the Palliative Care doctor. The Atropine Drops go in her mouth and work to dry the oral secretions for about 3 hours.

So, I dressed up the girls, gave Hope her drops and went for lunch. Hope did great. No coughing, no drooping eyes, no bubbling sounds, no foaming/frothing and no rattly chest. I'll have to try it again for a longer trip, but it appears that this may be a solution. Yeah, for doctors who care enough to problem solve with me.

Ashley loved the outing, she smiled the entire time she was in her Aunty Deanna's arms. Very sweet.

Brodie just called me to tell me 'all the fun things he did today'. It sounds like he's having a great time. Alex called too and it sound like he's not having a great time.

I finished painting Ashley's room and now I'm going to take it easy. Ya, right!

Monday

This afternoon, the girls had to have their quiet time on the couch, because I decided to paint their room this morning. I don't know if that was the wisest decision because I can still feel my achy legs and didn't realize how high those ceilings were (10 feet and no ladder). You should have seen me, standing on the kitchen stool on my tippy toes. My legs are still shaky.




Hope was pretty mellow, since she only woke up from her night time sleep at noon (lucky her). Unfortunately, she was crying by 4pm. Her medicine for the Thrush is all done, but the Thrush is still there and now she's crying again (it's 8pm and she's still crying). I'll be talking to the doctor tommorrow.

Ashley was full of smiles this afternoon, very fun to cuddle and only started moaning around 6pm when she was ready for bed. She is in a very good routine.

Brodie is having fun with Grandma and Grandpa still. He was happy to get a tractor ride today as he and Grandpa did some snowblowing on the farm. Yesterday, he had a ride on the snowmobile. He's pretty happy the snow is still around.

Sunday

It's 5pm and the house is too quiet. Alex just left for Saskatchewan (another 2 week trip), and Brodie is at Grandma and Grandpa Neufelds place. Not too sure what I'm going to do with myself...

Sunlight

The sunlight is filling the house and it feels great. Despite some unexpected changes we've had some nice days here. Ashley was supposed to go to St. Amant for the first time this week for a three day visit to give us a little respite. After numerous phone calls (the ward is isolated for the flu and I wasn't worried about it), they finally got to the point and asked me why I was sending her when it wasn't recommended. Oops...apparently I didn't read into their phone calls as a warning to stay away. I'm probably the only mom of a special needs kid that isn't afraid of her kid getting sick. Ashley is so healthy that she has always gotten over any illness in a couple days.

So, I ended up with a few days to cuddle all my kids and was happier for it (no respite booked at all and it was a treat to take care of them all by myself). Why should we need a break from Ashley anyway. Brodie started asking me if we were going to send him away and I realized what it must look like from a kids perspective.

Hope still worries me, but there is nothing to be done about it. I cuddle her briefly and frequently because she doesn't handle being up too long, and I often find myself grinning at her, trying to coax a smile out. We do get some cute little coos a couple times a day, but mostly she looks 'dopey'.

Brodie's spring break starts tommorrow and he'll be going out to stay with Grandma and Grandpa in Killarney. He's very excited. Yeah, for Grandma and Grandpa fun!

Relaxing

Brodie is happy to have Daddy home apparently. Can he get any closer?

I spent some time on the phone today and saved myself a lot of appointments, I think. We've decided that Hope can travel, we'll just have to have someone in the backseat to suction her. So, I can't take her too far by myself, but at least we have options.

Our doctor agrees with me, that it doesn't make a lot of sense. If the problem was Hope's lungs or even the swelling, then she should be worse when she is lying flat. So we don't know why the secretions become such a problem when she's upright, but we'll continue to use the collar, and suction her as needed. Good enough, I have a plan.

No Travel

Plans to go out to the farm are on hold for a while. Even with the collar, Hope doesn't do well in the feeding chair OR the car seat. The only time she looks okay is when she's completely flat. I'm working on what to do about this.

You can see Miranda in this photo, giving Hope her medicine for Thrush. This medicine needs to treat her mouth, so we don't put it in the tube, and it's amazing how well she's taking it. She seems to like the taste and swallows very well, with no coughing (unless we have her sitting up too long). Maybe we'll be able to try some of Grandma Joan's applesauce. Yum!

Great day

We've been getting some great smiles from Ashley this week, and I was excited to capture one on camera.

Here is Hope with her new cervical collar. I was pretty excited to find out that it was pink. Doesn't she look cute. We tried her in the feeding chair and she didn't start foaming but she did get lethargic within a minute which makes me think her breathing is still an issue even with the collar. Today she has been cooing all day and happy (with a hint of a smile, the real smiles haven't come back yet). The only time she stops cooing is when we hold her up or put her in the feeding chair, and then her eyes droop, her breathing changes and the secretions increase till you can hear them rattling around in her chest --- so we just won't do that.

We've also started treating her mouth with Nystatin because she has Thrush, a fungal infection which can be very painful in the mouth. Since we've started treating that, she's stopped crying all together. YEAH!

Happy St. Patricks Day

Happy St. Patricks Day!

Enjoy some smiles and pass them on...

Fun pics

I had some fun taking some pics of the kids yesterday when Ashley was on a smiling spree. Hope kept her eye's closed the whole time and Brodie jumped in because he loves the camera.

We're going to Rehab for Children tommorrow to get Hope fitted for her cervical collar. If it works then we should be able to travel. Right now if she's upright at all, she starts foaming and gasping and coughing. So, the collar should hold her head up so that she can breath when she's in a car seat or feeding chair.

Hope is still crying for short periods (about an hour or two) each day. Ashley is still smiling and Brodie is doing great.

Doing well

We've had some nice days, the sun is shining and Hope doesn't cry quite as much. She still cries most evenings for about an hour, but this is hardly anything compared to the last four months.

Brodie is having fun with a friend tonight, we decided to invite a friend for a sleep-over. It's fun to give Brodie some playtime.

Nothing too exciting, which is a good thing.

Have a joyful weekend!

Better

Just a nice lazy moment after school. Just picture me sitting beside Ashley and that's what you would see if you were here after Brodie gets home from school.

Hope had another good day yesterday, with no crying. It has been decided that we will leave her Gabapentin as is, and not worry about poking her for bloodwork right now. This morning we saw Occupational Therapy and Physio Therapy, which is always an enjoyable appointment for us. They told us how good the girls are doing. It looks like Ashley has grown so much that we are going to have to get her stander 'refitted' soon (we've adjusted here as much as we can to accomodate her height increase). The plan for Hope is a neck collar, so that she can breath when she's in her feeding chair or car seat. Right now she doesn't have enough strength to hold her head up (or protect her airway), and that's why she starts 'foaming' and gasping whenever she's in these seats. We hardly ever take her anywhere, and we've stopped using the feeding chair because she looked so uncomfortable. So a collar will give her neck the support it needs to hold her head off her shoulders and keep her airway open...Bonus!!!

Swelling

The good news is that Hope is doing great and hardly crying at all for the past week (the gabapentin is helping). The bad news is that the gabapentin is causing so much swelling that the neurologist want to decrease the gabapentin. I'm not impressed. I'm hoping to get the doctor to actually see Hope before the decision is made to decrease the gabapentin.

The only reason they know she is this swollen is because we were unable to get bloodwork last week (three different people tried = 7 pokes) to monitor the clonazepam level. I just wanted to know if we really needed to keep poking her, and now they want to take away the one thing that is making life bearable. I'll need to be convinced.

Family day

What a great day. Alex returned home yesterday after a two week work trip. So we had a nice lazy day...church, brunch, naps and skating with Brodie. It was great. Ashley liked her nap so much, she didn't want to wake up. Hope didn't cry today, just a little bit of whimpering that seemed to resolve with cuddles. Yippee.

Te He...

There are a lot more giggles around here with Hope crying less. The last few days have been wonderful, with less than an hour of crying each day. Today of course, Hope had to remind us not to get our hopes up too high...she cried from 2pm - 8pm.

But I don't feel weighed down with the crying today, just happy to have had some nice days with the kids. Best of all, Alex comes home tommorrow.

Happy Hope?

This is a photo of Hope from October that I just love (I know I've posted it before but here it is again). I pull it up every time I need to smile, so I thought I would share it.

I shouldn't even hope for this but it appears that the gabapentin is having some positive effect on Hope. She didn't cry yesterday at all, and today she only started crying around 7pm. We even heard some happy coo's today. She still has oodles of seizures. While holding her during an appointment this afternoon, I could feel the almost constant seizures gripping her body. It becomes more obvious when you hold her because you can feel the changes and the jerks and see the eye flicking. She still vomitts every now and then...just to keep me on my toes. But I am so happy to see some days with very little crying.

Brodie is recovering from his little flu and hopefully the girls stay healthy.

Home

"Yeah, Mommy's home", says Ashley. I had a nice weekend with Alex, and it's great to be home. I got home late last night after the kids were in bed. I got a quick re-entry into the 'normal' around here when I woke up at 0430 to find Brodie puking at my bedside. Poor kid...he's sick again. Ashley's moaning a lot and appears to have some stomach pains. Hope started crying at 3pm and kept it up till 7pm.

What can you do? Just 'smile and nod' I suppose....it is, what it is.