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.