Thanks

Wow, what an amazing shout of support and encouragment. Thank you so much to everyone who has encouraged us with comments and emails and hugs. I liked Alex's comment..."I think people are genuinely happy for us!"...which was stated with a look of wonder.

I have felt so much hope and happiness during this pregancy and it is so great to finally share that with everyone. It has been a very easy pregancy so far, and I haven't had any trouble keeping up with things around here. I had a bit of night-time nausea in the beginning and started Diclectin for that, which was very effective. Other than that, no issues.

Just to 're-cap' for anyone who wonders. With each pregnancy, there is a 1 in 4 chance of the baby being affected by the same disorder as the girls. It isn't linked to gender, and there is no way for us to find out ahead of time. If we had pursued it years ago, we could have gone through the expensive process to find the genetic marker that would allow us to check the baby for that marker via amniocentesis. We still don't feel the necessity of knowing during the pregancy, we would much rather have hope for the future. When the baby is born, a urine sample will be taken, and we'll know within 7 days if the baby is affected.

We had a wonderful Easter, sharing our news with our families. You can see some pics below. The girls travelled very well (hopefully that means we can get out a lot during the summer). Ashley has had a few more medication increases and she is doing MUCH better. She still wants to be held a lot, but has many more happy, quiet moments.

Hope is doing fantastic. She had a few days of cooing, smiling and almost laughing when I played patty cakes with her. Shocking! The last couple days she hasn't been as energetic because the seizures tripled in number and kept her drowsy.

We had a productive day of appts yesterday. Hope got her first stander, and I'll hopefully have some pics soon. Ashley had her KidKart re-adjusted, and her feet/leg splints adjusted. I also found real shoes for the girls, which is truly a landmark. The girls feet are rather puffy and their toes curl under, so it's hard to find roomy shoes that fit their 'fat' little feet, and allow me to pull their toes flat. I can't imagine trying to stand with your toes curled under.

In the pics below, you'll see my Dad holding Ashley, while Brodie tries to read a story to his cousin, Ian. Ian couldn't bring himself to sit still though! My mom is holding Hope is the next one.

News!!!

So...we've had another unexpected occurance in our lives. We are pregnant again! Due in September!

We didn't plan on getting pregnant, in fact, we were very careful to avoid it. We realize that many people will think we're 'idiots' for "allowing" this to happen, but we can't stop them from thinking what they will. Apparently God's plan is more powerful than ours. It's taken a bit of time to adjust to the idea. Despite that, we are feeling very blessed by God's gift to us and we are feeling a lot of hope and joy at the potential change this child will bring to our family.

We are anticipating that some reactions will not be positive and we hope to encourage everyone to be joyful for us. I wonder if everyone realizes that although our lives our quite 'different' because of our girls, it is our normal. We've lived these ups and downs for years now, and it really has become normal. We still enjoy wonderful days, evenings out, playdates with friends and hockey games with Brodie. We aren't discouraged when others talk of their 'normal', in fact we just join in and talk about our 'normal'. What I'm trying to say is...'Don't feel bad for us'...and please don't 'cringe' at the thought of another 'burden'. This baby will be a blessing whether it is healthy or not.

The girls have been a blessing in our lives, despite the obvious challenges. It has become increasingly clear that our purpose here on earth is not to seek pleasure or succeed or even to be happy, but instead to love. And the girls, in particular, have taught us how to love unconditionally. They give nothing in return, and yet loving them is a blessing. My day is fulfilled when I give, but I am often feeling deprived when I focus on what I have not been given. It seems that we have to learn this lesson over and over again in life. I know I'm sounding preachy...sorry about that. Hope I didn't bore you, but it's hard to put into words and I really feel that some people 'hurt' for us, and I want to put them at ease. We have a healthy relationship (obviously), an active, healthy son, two beautiful, cuddly daughters, a safe home (adapted for our needs) and a wonderful support network.

Spring Break

Hope is doing better, and it's so nice to be able to cuddle her and not worry about vomitt! She's starting to look uncomfortable at times, and it appears that she's starting to stiffen up and posture like Ashley does, even moaning the way Ashley does. This is somewhat disturbing for us. We are constantly trying to keep Ashley comfortable, so I can't imagine both girls crying and moaning all the time. Hopefully we can find the right balance of meds/cuddles/excercise that can help with comfort. The Palliative Care team has been a great help in managing the meds and helping us problem solve.

Brodie is having a great week. Playdates every day. Spring break is so much fun with him home. The girls love hearing the sounds of the kids.

Better!

We had some nice moments outside on the front porch yesterday. It's so nice to see warmer weather and sunshine. Ashley is still moaning a lot, but we're working on that.

Hope slept well last night, and woke up with a very wet, flooded diaper. Yeah! She got her bath and hair do, then blessed us with cute little, 'almost smiles'. We had some lovely cuddles this morning, and she even made some cute little 'Hopey noises'. She's definitely better.

No vomitt...

My night shift went well and I just woke up. Hope looks pretty good right now, although a little 'freaky' with this wide eyed staring thing she's doing. Her eyes are wide open and fixed for the most part, making me check to see if she's breathing (which she is), and occasionally she will blink, so that's good. I'm guessing, there is some constant seizure activity going on, that I can't see.

No puke today, and she's been getting watered down feedings. I was expecting that she would have a wet diaper this morning, but not yet. Hopefully she had one while I was sleeping, I'll be asking Alex when he gets back.

Waiting....it feels like we're always waiting to see what happens. Not daring to say what could happen. Waiting for the relief of knowing she's gotten through another episode.

Meds in...

Brodie just left on the bus for school, Ashley has had her meds, feeding and stretches, and Hope is still awake but not puking. She's kept down three meds so far this morning. I'm giving 3ml amounts every 20 minutes, hoping that her stomach can handle it. so far so good.

It's day 3 of the 'episode' and she's following her expected course. She's having more seizures than awake moments, she hasn't slept since this started (the seizures keep her awake), and she hasn't pee'd since Tuesday. Once the meds are in, I'll start a slow drip of pedialyte and see how it goes. By tommorrow, she should be looking a whole lot better.

In the meantime, I'm hoping to get a nap this afternoon, because I'm working nights tonight.

more vomitt...

This pic was taken in Sept/08 when Hope was 14 months old. The same month that she started deteriorating a year and a half ago.

This morning I got up to find Hope and a puddle of brown, icky vomitt (her stomach started bleeding again). This I expected, and last night before I went to bed, I positioned her well enough that her face wasn't laying in the puddle this morning (my biggest concern because her face gets rashy and bleeding when this happens). It's always hard to position her, because her seizures become so intense during these episodes, that her little body is thrown all over the place. Luckily, the head banana's helped keep her head from flopping down into the puke puddle. Head banana's are the white, soft pillow things holding up Hope's head in the photo above.

Hope was puking every 5-10 minutes last night, for about 3 hours before we went to bed. Alex stayed up longer so that he could suction her, and then I got up earlier, to try and limit the time that she's puking by herself. Her little stomach just heaves and heaves, and it's so sad to watch.

This morning she's only puking about every 20-30 minutes, and it's coloured with old blood becuase her esophagus breaks down and bleeds with all the vomitting. Her seizures are worse this morning, more frequent and more violent, but that is becuase she hasn't kept a drop of anything, including meds down since 1pm yesterday. She hasn't had a wet diaper either, but that makes sense with the lack of fluid.

Overall, it sounds bad and it looks bad...but she's done all this before. In fact she does this every month and I just happened to give you a more detailed picture this time. She'll get over it like she always does and then we'll carry on. In the meantime, she's stuck on the couch and not travelling anywhere.