The deck...

We've been working on our deck and it was pretty exciting to bring Ashley outside to feel the wind on her face and get a bit of sun. Unfortunately, the deck building has come to a halt. Alex has sprained his ankle, rather badly (the doctor said it would have been better if it broke!). So, he's on crutches.

Ashley's new medication is making her sleepy but has not stopped the crying. It may take a bit of time to figure out what will make her comfortable. Hope is doing great despite her many seizures.

Nothing new...

Nothing too exciting here. Ashley is back to her uncomfortable self, usually crying more often than not. We're still trying different positions/cuddles and trying to adjust meds to help her find comfort. Mostly I think she needs to sleep and is having trouble with that because of the seizures. The next med we are going to try is called Clonidine. Apparently it works very well with pediatric patients with irritability and pain and general discomfort.

Hope is great. She hasn't had a vomitting episode since March and is still giving us little half smiles, and appears to look at us when we talk to her. Brodie is loving school and enjoying soccer in the evenings. We're enjoying Wed evening slow-pitch. It's a good start to the summer.

Teeth!

Ashley lost her two bottom teeth this weekend...can you see? She was so cooperative, letting me take a photo!!! Now she is caught up with Brodie, he's only lost his two bottom teeth as well.

The girls are doing well, same as before. Multiple seizures with smiles in between. Hope is still pretty responsive at times and this makes it fun for us. Ashley still wants to be held...A LOT!

This past weekend we started working on our deck, and are excited for a backyard this summer. It's our third summer in this house, so we are going to appreciate every bit of this deck and I'm sure the girls will too. Our door to the deck is a 'low-profile' door, that the girls' chairs can roll over easily. So it will be fun to bring them out with us for a meal outside.

Ultrasound

No pics today, I've been a little slow in the camera department. We had our ultrasound today, and baby looks good. Good strong heartbeat (140 bpm), good growth and cuteness all around (how could one of our babies not be cute!!!).

No, we did not ask about the gender...we like a surprise, so you'll all have to wait to see what 'pops out' in September (or October, since I'm likely to be late). We didn't expect anything too exciting to show up during the ultrasound, because the ultrasounds and fetal assessments with the girls were always normal too.

Hope and Ashley are doing well, although it seems like they're competing to see who can have the most seizures. Hope definitely wins though, because she's having at least three seizures per hour. AShley is only having one per hour (when awake).

Brodie was supposed to start soccer today, but it was raining so we went shopping. Not a great way to stay on budget. Alex was showing me the 2011 Sienna van because it has middle seats that slide on a track quite a distance. We've been trying to figure out how we're going to fit three car seats and get Brodie into the back row, and travel with a wheelchair and two strollers (which he would have to climb over, if he has to climb in the back hatch). Alex thinks this new van might work because we could slide Ashley and carseat all the way forward, without collapsing the seat and Brodie could slide in the back from the side door. I'm not sure I'm excited about a car loan. I think we'll wait till baby comes and see how much trouble we have, then make a decision. Besides, we find ourselves too overwhelmed to travel anywhere as a family anyway. Thus, no problem!

Smiles in church...

Brodie helps out in church by holding Ashley when we stand up...she loves it of course!

The girls have been enjoying their standers. Hope does quite well, despite a little bit of trouble with her secretions. They go in their standers for about 45 minutes, once a day. You can see that Hope is pretty tall, catching up to Ashley it appears!

Sleeping...

Aren't they sweet? Sleeping kids have a special kind of sweetness. We had a great weekend, the girls are doing fairly well. They are sleeping a bit more, because both of them are having more seizures. Maybe it's all the fresh air? We have had the windows open a lot. Ashley is doing great with her medication increase, very comfortable when we hold her, and sometimes comfortable when we leave her in the kidkart.

I'm 19 weeks into the pregancy and I can finally feel baby moving. Very exciting. Tonight, Brodie asked me what we are going to call the baby. So, we had a fun discussion about potential names, and then I informed him that he can't tell anyone our potential names. Too fun.

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.