Showing posts with label Sturge Weber. Show all posts
Showing posts with label Sturge Weber. Show all posts

Sunday, September 7, 2008

Wow... what a week... yet still stamped!












Wow, what a week we had...first, Parker, my just-turned 5 year old started Kindergarten this week. The school is right across the street from us, our front door looks right at the front door of the school. Ever since Parker could talk, he's been saying that, "when I'm 5 I get to go to the big school!" So here are a couple of pics of him on his first day. He got a nice big hug from his sisters for good luck. Group hug!!! My mother-in-law was here all week to help out, my daughter, Paige, had an MRI to check on her Sturge Weber, which I mentioned before, to see if the area of her brain that is affected has spread, grown, or changed in any way. We have to wait 72 hours for the results... we are hoping for great news!! It's so hard to go to the variuos appointments all the time and see my little baby go through so much, but she's tough, and as you can see from the pictures, quite a trooper! She's all smiles waiting for her procedure! She's pulling the curtain open and shut to play peek-a-boo with the nurses and technicians outside her room. Isn't she darling?! We also celebrated Grandma's birthday with a special dinner for her and I made her an angel cake. She loves angels, wears one on her shirt every single day, so I made a cake in the shape of an angel and frosted and decorated it. Parker drew her pictures and I gave her the card I made for her, see below. She is so awesome and was such a help with everything we needed to accomplish through the week. I'm always sad to see her go. She's only 2 hours and 15 minutes away, but I wish we were only blocks away! Also, I spent the weekend getting prepared for my latest challenge to come! Tomorrow morning I am starting to babysit full-time for my DH's cousin's son, who is 14 months old. I know, I'm crazy, right?!! I just get one in Kindergarten and add another!!! But I think it will work out great for both of us, I'm actually excited and hoping my girls love the idea of someone smaller than them to play with (or boss around!)

Wednesday, April 9, 2008

Paige's Laser Treatment





Paige had her second sedated laser treatment last week. If you don't know me, one of my twin girls has Sturge Weber. I have a link at the right if you do not know what this is. Anyway, as a result of her Sturge Weber, Paige has a port wine stain on the right side of her face. During her first year, we did small non-sedated laser treatments at the dermatologist's office. We were told the port wine stain was just a surface condition and that once it was gone, you wouldn't know it was there. When she was about 18 months old and really resistant to the non-sedated treatments, our dermatologist sent us to another dermatologist at a hospital for sedated treatments. We then found out that because of the Sturge Weber, her port wine stain w0uld return time after time. Also, if not treated regularly, the affected area swells (such as her lip and lower cheek). So we are on track to do the sedated treatments every other month for a year and then determine to what extent and for how long the port wine stain is going away and lightening. After her first sedated treatment, she had very dark purple bruising from the laser itself. After two weeks the bruising went away and then for 4-5 weeks after that, we saw the stain lightening quite a bit. Right before the second treatment, we noticed it returning. So this is a picture of Paige after this last treatment with the bruising again. It will be another two weeks before we see it start to lighten again. Paige has been through numerous MRIs, EEGs, and other testing and sedated procedures (including for glaucoma in her right eye). She is a real trooper, the resiliency of children is amazing! It's made her very strong, she does not let anyone push her around and toughens things out, her twin sister on the other hand, is very much a Drama Queen and will not tolerate anything out of her comfort zone! :-) There is also a picture of my two handsome men, John & Parker, and one of the Drama Queen, Mackenzie!