In bulk

You know how you go to Costco and buy things in bulk, well this post is kinda a bulk type of post, I have had a few things to blog about lately but never make the time and then it just gets harder to make the time as I know its going to take longer as I've now go so many more things to put in my post. Make any sense? for example have I posted Sara's 1st haircut that she got more than a month ago? Anyway, can't go back that far but here are some pics of the goings on around here:

My desk - a tag from Rebecca's blog, I'm not really into the tagging thing but I thought this was a fun one, the place where we blog from, here is a picture of mine, its actually pretty clean. I usually have all sorts of papers around as I can't throw anything away until I've been through it, magazines, rebate's and I make lists of all kinds of things so they are usually lying around too. My computer is also in kind of a weird spot as Eric changed up a closet in the hallway going into our room to house it, mostly because the "office" room is so far away, this way I can blog and be close to my girls room, the kitchen etc etc.

So I was kinda thinking that the above pictures maybe technically be my "desk" the place where I type from but in reality I think this is my desk because this is really where I do most of my work. Its never really as clean as I want it to be, ces't la vie.

Like creating cupcake pops - and let me say Bakerella I'm not - but I am a tryer and I saw these on Brooke's blog who referenced Bakerella's blog and I knew I had to try them, its just a me thing to do. So I tried them and they turned out cute I think. Fun to create and fun to share it with my little girl who helped put the M&M's and sprinkles on each one. The pink ones are Bakerella's and the blue ones mine, its pretty obvious but I just thought I'd put it out there.

And spinach pesto, I made this and just tossed a few spoonfuls onto some warm whole wheat pasta and it was a delicious meal, it was just baby spinach, basil, olive oil, Parmesan cheese and a clove of garlic. The recipe also called for pine nuts but I didn't have any and I suspect Eric may be allergic, it tasted fine without them and its one of my new faves for dinner, very quick and easy.

It has been super hot and so the pool warmed up quite nicely, Kate is a great little swimmer and Sara is loving the water too.

Forts - Kate has just gotten into fort building and always asks daddy to build her a fort, this is the latest creation.

The girls love to paint, Sara especially loves to paint, the paper, herself, it really doesn't matter!!

Sara's haircut - actually they both got a trim - could I really finish this any other way?

EB in detail

O.K. so tonight I saw Gina of the blog Jonina and was chastised for not updating so frequently these days. I know, I know, I've been terrible about this but here is the reason, I have been totally engrossed lately in these projects, making baby blankets and sewing burp cloths, it has severely interrupted my blogging time. So that is what takes up my free time, which is minimal in the evenings as I am mom to 2 adorable girls ages 2 and 4, a wife and I try to keep my house in a somewhat recognisable shape. And here is reason #2 why I suck at blogging lately, about 2 weeks ago Kate said "mommy, when I get bigger can you and daddy make these blisters go away?" I was almost in tears after she said that. Most of you know but for those of you who don't Kate has a skin condition known as epidermolysis bullosa (EB), it causes her skin to blister in response to friction or trauma. The heat makes it worse and as we are entering the heat of summer it is beginning to get worse. There is no cure for EB, just treatment of the blisters which includes popping them as they occur. It sounds strange as it goes against everything most people know about blister treatment which is not to pop them, the trouble with EB is that the blisters fill with fluid and if they are not popped they grow, Kate once had one that got away from me and grew so big that it encased the whole of her little toe. Popping blisters on a 4yr old is not an easy task either, she does not like it, sometimes we have to resort to doing it while she sleeps, it is a heartbreaking disease and so lately I have been on the DEBRA website reading their forum chats, on the yahoo ebcalifornia group trying to find yet more info and trying to see if anyone has a referral to a good Dr. that knows something about EB, thats another frustrating thing, its quite rare and a DR. or nurse can go their whole career without ever seeing it, so as it stands I haven't yet found someone who has seen it before. Lately Kate has got a white patch on her tongue, I'm pretty sure its a blister but she had it when she was about 9 months old and it stayed for about a year, its now back and I am a little concerned and want to know that its O.K., there is a type of skin cancer that people with EB are more susceptible too its called squamous cell carcinoma, the ones with a more severe type (RDEB) are highly at risk, so far Kates type is most probably simplex but is unknown as 2 skin biopsies were both incomplete. Anyway, lets just say this has been occupying my time lately, I love my little girl and it pains me that she has to suffer, even worse because somehow Eric and I gave this to her. To end this post I will end on a good news, the University of Minnesota has conducted bone marrow transplants on two boys with RDEB and the results are promising, read the full story here Nate Liao, this moms drive to find a cure for her boys is remarkable, she is absolutely my hero right now, watch the video. I have also been reading that people with the milder form like Kate are taking Valtrex which is reducing their blisters, ever heard of Valtrex? its for genital herpes but the theory behind one guy being treated with it was if he had blisters elsewhere how would they be treated, and so his nurse practitioner wanted him to try it and it worked, there are others that have tried it too and it is showing improvement for them also. Anyway, thats the good news. Let me also say that Kate is an amazing little girl with a wonderful spirit, she rarely complains about what she has to go through even though sometimes she is in obvious pain.

If anyone wants to help you can donate money through the DEBRA website or if you live by a Ralphs you can sign up for community contribution with your Ralphs card, they will donate a portion of what you spend to EBMRF (EB Medical Research Foundation), you will need the NPO #81963 and every time you shop at Ralphs you earn money for EB.

Also, stay with me, I have a good idea for a new post coming soon!!

A Thousand Splendid Suns

Let me preface this by saying that I am in no way political, to start with I can't vote, I know who the candidates are of course but not much else. Yes this is probably naive of me but I just wasn't raised in a household that talked politics. Anyway, for May our book club book was A Thousand Splendid Suns, it follows the lives of 2 Afghan women and spans 30 years. I know the war right now is a hot topic and I have been pretty indifferent, I am sure there are plenty of good arguments for or against but if you do have strong views against the war maybe you should read this book, the life it paints of the people that live there, and by that I mean THE PEOPLE, not the ones in power the ones just like you and me, for them the war is making a difference for the better. I would also recommend getting this one on CD, the narrator Atossa Leoni does a remarkable job.

My new thing

Glad to see people haven't given up on me so as a reward two posts in two days!! Woo-hoo!!

So my new thing is Hell's Kitchen, love it, love it, love it and as with all good things TV it began in Britain. Gordon Ramsey may have a bit of a potty mouth but if you check out some of his other shows (I checked them out on you tube) he is actually a nice guy. This clip is pretty cool, I don't have cable so if I'm like the last person to see it I apologise, anyway, Gordon Ramsey in his show F-Word (very aptly named) went to a prison to show them how to cook up some leftovers, challenged an inmate to an onion chopping race and was left eating the inmates dust. Pretty cool as he actually offered the inmate a job when he gets out.

Finally

So I'm getting pretty lousy at this and adding to it is the fact that I can't get my camera to sync to the computer anymore. When I finally get my pictures I'll post some of Sara's super cute haircut. Also, something cool happened today - I am a convert to the church and I don't necessarily keep in contact with the missionaries that baptized me except I do try and send a Christmas card and update each year, however, my card to Elder Yost has been coming back the last few times and out of the blue today he called to give me his new address. Kinda threw me off and I really didn't know what to say but it was kinda cool. Maybe I should send him a note because I really do have fond memories of that time in my life, I did have a friend who introduced me to the gospel and asked if I'd like to listen to the missionaries, so they didn't exactly tract me out but I definitely felt of their spirit as they taught me and they really did teach me the restored gospel and play a huge part in my conversion. Anyway, I've never been a missionary so I'm not really sure how bothered they are to stay in contact with the people they help convert but I try just so they know that they did make a difference in my life.

P.S. I hope that everyone hasn't given up on me and stopped checking my blog.

Happy Birthday

My dad phoned this morning, seemingly to just randomly chat. It has just occurred to me that today is my sisters birthday, she was killed 15 years ago in a helicopter accident. The cadet pictured in the clip is one of the others that lost his life, not my sister but the crash pictures are real, still brings tears to my eyes, maybe even more so now I have my own darling children. Happy Birthday Amanda, we still think of you and miss you, can't wait to catch up when I see you again.

Thank-you

I had a conversation with a good friend yesterday, we were talking about trying to be better mothers and wives. Its kinda funny because we were both talking about how we feel pressure of all these things going on around us that just ends up stressing us out, one of the things that came up was thank-you notes, I have to admit I have been terrible with sending thank-you notes over the past few years, pretty much since Kate's 3rd birthday party. I had the best of intentions, I was even just going to send e-mail thank-yous but truth be told I just never got around to it. It doesn't mean I am not thankful though, I can actually look around both of my girls rooms and point out where and who most of their toys came from, Kate got a Dora bat and ball from Luke and Darby, Dora play doh set from Grace, her Maggie Leigh doll from Keaton, safety kids CD which we listen to alll the time from Matthew, the list goes on, from Sara's room (this one is a little tougher as Sara's birthday was big chaos and her cousins and sister helped open her presents so some of them I don't know who they came from) Gabrielle gave her these little Disney books, we actually didn't read them for the first few months but now they are some of Sara's favourite things, her rooster flashlight from Lindsey, PJ's from the Cooke's which she is just out growing and has worn a billion times, a cool Elmo giggle ball who unfortunately I don't know who that came from, etc, etc. And what about other times people have served me? Like the time when Annie McQ gave Eric and I the biggest sandwich you have ever seen when Kate was in the NICU that fed us for 3 days, other dinners that have been brought over and times that people have watched my kids, for real, I have many, many, many thank-yous to send. Am I terrible because I haven't always sent notes? has anyone else ever bailed on the note sending? I seem to get them a lot which kinda adds to the guilt. One of the things that came up was about paying it forward, here is my theory: I'm not 100% convinced that you need to give back directly to the person who has served you, for example - when Sara was a few months old I was miserably sick, 102º fever, I'd seen Christina Anderson at church the day I was feeling it, the next day when I felt I could go on no longer some soup landed on my doorstep, I have never been more grateful for a delicious hot meal in my life, I have never actually taken dinner to Christina but instead have tried to do the same thing for someone else. My point is that maybe people do nice things for you and you can't give back right now but as long as you do give back at some point and to someone, even if it is someone else then that counts, does that make sense?

Anyway, point of this post? THANK-YOU to everyone I should have sent thank-you's to but haven't, I do plan on getting better at it but for now I hope this will do. Sad thing is most people I owe a thank-you to don't read my blog but hopefully if I send this out to the universe it will count in some way.