Sad crying...

Hope has had a hard evening. Too many scary seizures, causing her to cry/scream and cry some more. The drugs have not helped this time it seems. The intense crying lasted for about three hours despite the extra meds. Occasionally we would be able to console her with cuddling and soother, only to have another seizure start a new crying spell. Very hard to watch.

Now, she's in her bed making little sad noises, but not crying. Hopefully she falls asleep.

Ashley had a lovely day, with some little smiles.

Smiles

We are still blessed with smiles and coo's each day. Hope is doing well, despite the seizure activity that continues. I guess my idea of 'doing well' has changed a bit. My perception is that things seem a little more stable right now because we've gotten used to the seizure activity and Hope's decreased movement on the left side.

Now we're focusing on more chronic issues, like positioning. Hope has a strong preference to keep her head and eyes to the right. It doesn't matter how many times I reposition her head, she shifts it right back. I'm trying to avoid the flattening of her head on that preferred spot, like Ashley has. Ashley has a strong preference to turn her head to the left, which eventually left her with a flat spot on the back of her head, making it difficult to position her head in any other way.

It's kind of fun, because I'll turn her head to the left, and she'll smile and turn it right back the way she likes it. Little munchkin!

Hockey?

Ashley's cheering on Brodie while he plays 'mini hockey' against Daddy. Brodie gives Ashley a 'fist pump' whenever he scores, and of course, Ashley gives him a little smile back. This little hockey game was Brodie's first purchase from a garage sale (he used his own tooney).

Hope had a good day again today. Smiles and coo's, and she drank one bottle today. No vomitting, occasional brief seizures. It was a great day.

Fun with Cousins

Hope is checking out her cousin, Ian (my sister, Kyla's little guy) in this photo. We had our first gathering in the new house, and I would say that it worked quite well. The cousins had fun riding 'cars' in the basement, actually named 'funtown' by Brodie, and us adults enjoyed some food, visiting and baby cuddling.

Ashley came back with Grandma and Grandpa, ready to join in the fun. Hope and a great day, she really seems to be holding on to this 'good spell'. She is just full of smiles and coo's, I love it. Brodie had so much fun playing with his cousins.

Lazy morning?

Brodie decided we needed to have a 'lazy morning'. I was curious what that meant, and was pleasantly surprised to find that it meant playing by himself and reading his lego magazine, in his PJ.s of course. He really makes life easy for me sometimes.

By the way, I changed the settings on the blog, so everyone could comment. I didn't realize that I had restrictions on comments, and certainly don't want to restrict comments. Comments are what keep me going here. I love to hear from everyone, thank you so much for the support.

Brodie's eyesight

We finished up some appointments last week regarding Brodie's eye, and it looks like we'll be going ahead with treatment starting in the middle of November. Brodie has amblyopia or 'lazy eye', and basically we have to strengthen the weak eye. His left eye has 20/20 vision, but his right eye can only read the biggest 'E' on the chart with a very strong lense to assist. Usually treatment is recommended BEFORE the age of 5, but recent studies show that it's worth attempting treatment even up to the age of 17 years old.

We're not sure that treatment will help much (according to the first optomotrist), and I'm not sure that I have the time/energy to enforce the plan, but we'll give it a try. Sighhh..... It means patching the good eye when he's not in school and wearing a strong lens on the weak eye (and if anyone tells me that this should be easy, they better get themselves over here to convince him to wear the silly patch). I'm not sure how my independent little guy is supposed to get himself breakfast when his only eye has a patch on it, in fact I'm not anticipating much fun in this adventure at all.

We'll probably figure it out just fine, and this will fade into the background with all the other 'bumps' we've encountered. So, for now, I'm not going to worry about, or even think about the work ahead with Brodie. It doesn't do any good to focus on how busy I'm going to be, so perhaps some of you could help me out with a few prayers in that direction.

Happy Hope

Hope has had a wonderful day, full of smiles and coo's (yes, seizures too). It's so fun to watch her try to pull out her tube that I had to post a little video. It's 9:15p.m right now and I can hear her in her bed. She's making some very joyful noises, and somehow Brodie is sleeping through it. For those of you who would not know, Brodie was 'lonely' in his room, so we moved Hope in and now he's happy. His room was hardly used during the first two months we lived here, because he always slept with the girls. Too cute.