A Year Passed

It's amazing what a difference one year can make when you work hard! The thing that sticks out most to me in this picture is how big my arms look back then! I was just going through some pictures tonight and came across this so I thought I'd share!

I'm Back!

Okay I'm back and hopefully in action! I had a completely hellish week last week but now we are moving foward so now I have a tad bit more motivation to blog! In my absence Taylor learned how to sit! I worked with her hard for over a week because I'm neurotic and right when she turned six months and she wasn't sitting up and I know that with neurofibromatosis there can be developmental delays I went full force into wanting her to sit! I was constantly propping her help and slowly but surely a week later she got the hang of it which makes me happy! I am staying busy trying to keep up with my Project 365 for Taylor over at flickr! I'm trying to work on my photoshop skills so some of these pictures are edited not the greatest cuz I lose my patience after working on a photo for so long! The boys are doing good, I'm working on potty training Zachary right now. He went pee in the potty once yesterday and once today. I had him without a diaper for four hours this morning and finally he went pee in the potty! I knew he was holding it in so Asa and I are going to try to go full force in this potty training thing and hopefully he'll start to get the hang of it quickly! One less diaper to change would be nice! Taylor had her genetics tele medicine appt last week and while it went good the doctor didn't tell us much that we didn't already know from all the sites we've been to on the internet. He did take a look at quite a few of her spots and he said that we are going to need to come see him in person in a year over at OHSU and he wants to do a full exam and have one of his genetics opthamologist do a vision test on her then as well. And Asa and I are still discussing about the gene testing. I thought it was agreed upon that we would do it but now he is saying that he doesn't want to so him and I need to discuss that more in depth. So for now with Taylor we will just continue to do her monthly visits with the early intervention center and go from there!
Okay so I totally stole this idea from another photographer but it was so cute and I think it's absolutely adorable! Gotta love baby butts!

Taylor's first tattoo! She actually got one on each arm. She could care less about it as seen by her expression but Connor sure got a kick out of seeing her with a tattoo!

It's amazing what fixing my hair and putting on some makeup will do to my mood! I've been feeling all sluggish and in mommy mode so I decided to jazz it up a little!

My boys being super cute!

Gotta love the big cheeks! I love when I take her picture and her cheeks pop out like that! Zachary has those same cheeks and I remember when he was first learning how to eat real food I couldn't tell if he had food in his mouth or not cuz his cheeks were so big! Obviously I'll have that same problem with Taylor :-)

Because I'm Insane

Day 1 of 365, originally uploaded by amberdean.

Okay so I've been working myself up to this for about 7 months. But I've finally decided to participate in a group on Flickr It is called Project 365 Kids and you take a picture of your child daily for an entire year. While the task seems daunting to me it's something that I know I will love to look back on when it's over. So join me if you'd like! I'd love the comments to keep me motivated! To start the day off I wanted to use some of the boys body paint soap in the bath tub but it didn't work out the way I wanted it too so I settled for this instead!

Neuro-What!?

As some of you know and some of you don't know my life in this past month has been a mixture of ups and downs. I have been knocked down from my pedestal of thinking everything is fine and I have healthy children. By this I mean that we had Taylor's 4 month checkup about 6 weeks ago. Two days before her appt I was in the gym working out reading a Parent's magazine. There was an article about certain birthmarks on babies and what they mean. Well I came across these café-au-lait spots and realized that these look a lot like some that Taylor has on her back and on her chest. At the appt I talked with my doctor about it thinking that it wouldn't be a big deal but it turns out I'm wrong. These café-au-lait spots are a symptom of neurofibromatosis which Asa's uncle has. When we realized that Taylor is having symptoms of something that is in Asa's family I have started to worry constantly. I have been seeing the kids pediatrician for almost five years now and I have never once seen that concerned look on his face that he had that day. Right now we are busy reading all information that we can about this disease and getting appts set up for Taylor. Once a year she will have to go in and have her vision checked and this last Friday she had her first eye appt. Everything checked out good that day but the doctor also said that he wasn't necessarily expecting to see anything. He said that the Lisch nodules in the eye (extra pigment in the eye) that are associated with neurofibromatosis don't generally show up until a child is between 5-7 so while it was a little comforting to hear that so far she has no problems with her vision at her age but he wasn't expecting to see a problem. Then this past tuesday we had an appt with the early intervention center because people with NF1 tend to have developmental delays. At that appt we were informed that she is behind in certain areas that other children her age do. But there is no way to link these delays she's having to having NF1. They gave me a list of activites that I need to be doing with her to help strengthen her body. They say that she needs to build up her core muscles more and she tends to be a bit lazy and I need to work on more tummy time with her and getting her to put weight on her forearms which she hates doing! With this early intervention center they want to see Taylor once a month for a minimum of 1 hr till she is 3 years old! And today I got the long awaited phone call from the genetics dept at OHSU We are going to be set up with telemedicing through them meaning that Asa and I will go over to the local health dept and we will be able to communicate with the genetics doctor via web cam and talk with him about our concerns and where we should go with all this. I'm hoping that he will want to do some genetic testing because as of right now with NF1 there is no certain test that says yes this is what you have or no this isn't what you have but if she goes in for genetic testing and they find out that she does in fact have the gene for NF1 then it is a more likely scenario that she does in fact have NF1 so that appt is in about 3 weeks.
So there you have it, I'm still a little shell shocked that something could be wrong with my daughter, my little girl. And I find myself thinking about the future, her future. If she does have NF1 if she chooses to have kids she will have a 50% chance of passing this disease on and if she does in fact pass it on her children might not have a mild case like she seems to be having. While I know that I need to focus on the present and not so much about the future I can't help it when my minds wonders sometimes.