Savannah got her first pair of glasses two days ago. It's been really hard for me because, to me they're not just a pair of glasses. They represent just the beginning of the loss of Savannah's vision. It's an actual object that is there, here in our, her life now that make it more real that this is going to happen. It's not just doctors and diagnoses, saying that she will slowly lose her sight. It's not just a syndrome, which says that 90% of BBS children will have rod cone dystrophy. It's happening, and it's real.
A few weeks ago I found out that there is a Vision walk for fighting Blindness in Salt Lake. http://www.fightblindness.org/site/TR?pg=team&fr_id=4100&team_id=58280
The vision walk is on June 18th. I've started a team, called two little reasons. I think that the name just sums up all that I'm, we're fighting for. This walk couldn't of come at a better time for me! It helps me to know that I'm doing something, and every little bit helps. Maybe we can prolong Savannah and Xander's vision loss. I know it's just a hope, and it might sound stupid, but we all need hopes. It gives us the will to go every day! It makes me so sad that my children might not ever be able to see all of the beauty of nature and colors that they love, and that they may not ever be able to see the eyes of their own children one day. Savannah and Xander's eyes are so beautiful and full of their personality and love. I know it might sound really corny, but their eyes smile. I love to look at them each day, and never take them for granted.If anyone would like to join our team and for the vision walk, or donate to the research for the Foundation Against Fighting Blindness or both, please feel free to go to the link.
The things that I love about Savannah's glasses!
She looks adorable in them!
She loves wearing them!
She hardly ever takes them off!
I think she can see better in them and I think that's why she likes them!
This is going to be a backwards, long march post! Just to warn you! Xander has started to roll over from his back to his front this last weekend. We were so happy at first but, it's not so cute when you are trying to change a diaper and he is trying to roll away. He is also started pulling himself up to furniture and everything. He is a little monster. He still doesn't sleep very well. Last night he woke up at one and I couldn't get him to go back to sleep until about five this morning.
I made lots of birthday cupcakes last week! They were so yummy! This one is snicker-doodle!
Cookies n Cream Cupcake! I'll post the recipes on my food blog later when I get a chance!
We've moved so, we've been trying to sell some things that we can't take with us. If anyone needs a table with six chairs, and two leaves let me know!
We also want to sell this beautiful full length mirror that Court built.
I've been trying to make Savannah's lunches more cute and her veggies look more yummy to her, so she'll want to eat more veggies. It works!!!
This is my failed attempt at making sushi. Where is Meagan when I need her! She is great at making sushi!
We made rainbow m&m cookies!
Moving! This is a "Xander in the box"!
Xander loves his big sister!!!
Xander had his first hair cut. The pictures are backwards. Sorry! I love his hair!
Savannah and Xander got to go out for the first time to play!
Savannah wasn't very happy with Xander.
These are the last pictures of Xander's special little unique foot and hand before his surgery. We got up early Monday at 3:50 AM, after Xander having 4 ounces of Pedelite at 2 and then nothing else. We left a little before 4AM.
At the last few minutes I started to have second thoughts on him having his surgery. I started thinking these are a part of him. We're having a part of Xander removed, and it will be painful for him. But, I decided not to say anything.
Getting Xander dressed in his adorable little scrubs.
The socks din not want to stay on his feet at all. His feet just aren't made for socks or shoes, neither are Savannah's.
Xander was so tired, he fell asleep.
It was hard watching them take Xander away for his surgery, but I was so proud of myself, that I didn't cry. The surgery was a little over an hour.
Xander did really well. His hand was a little bit trickery than his foot, because there was bone that T'd to the extra finger. We had to say in the recovery room for almost four hours, because Xander needed to be on oxygen because it kept going down below 90. At one point it was a 75. Thant was kinda scary. He had to keep his Oxygen stats up for at least 30 minutes on room oxygen to go home.
Xander slept almost all day Monday. Now he's back to his normal self.
Xander has been very naughty and crawling and standing up all over the place. His badges look awful and he's only had them for three days. He eats and crawls and does everything with his hand and foot.I'm so scared that he is going to brake his stitches. The surgeon said that they can't stitch it back if he does. It will just leave a big scar. Xander is doing really well, maybe a little too well. No break for me. He's a tough little boy!
