Thursday, August 30, 2012
So, once again. I am begging you for your prayers. This would be a miracle, and my family needs a miracle right now. I hate to think that finding this crazy obscure syndrome on the internet then finding a family whose child had the disease through social networking who then could lead us to doctors halfway across the globe who could take our blood and confirm a gene was all for naught. I hope there was a larger purpose for all of that.
I know I am being pretty open on a very public forum but we have had wonderful things happen to us because people read this blog and I am hoping that lots of prayers will come from being so open. I probably wont put every aspect of the journey on the blog. Its would be just too hurtful if it doesn't take but here is out first shot. Lucky for me I have two wonderful girls who have traveled this road before me right on my same street! So they came over and helped me with my first shot. Since we have some challenges I have to do two a day instead of the normal one. ugh.
Poor Quinn and I are feeling the stress. I had a dream that I was on a cruise and was trying to find a helicopter to take me to my ultrasound. Quinn had a dream that he slept walked and had mixed up a shot and woke up wondering how he was going to tell me.... They say try not to stress but easier said than done. If anyone knows some good techniques I am all ears
If you happen to be LDS my family is having a special fast for our family this fast Sunday. We would love it if you would join us. If you aren't we would love your prayers and good thoughts for us during this journey. Thank you!
Monday, August 27, 2012
I had to post these videos of Lila swimming. It is her favorite thing in the world to do. If you haven't seen a glimpse into Lila's personality you can see it when she is laughing and kicking in these videos. Plus I love seeing Gracie and Lilas relationship in these videos. They are best buddies. I love it. (The second video is probably the best and the shortest)
While in Cali I noticed people starting to stare at Lila more. Especially when she was swimming. A calm and sedate two year old tends to be noticed. But once after we had stopped swimming for the day we had a gentleman come up to Quinn and I and told us how much he loved watching our family. That he could tell we had a lot of love and patience with our situation and that we wanted to share just how touched he was. It was really sweet.
Kelli and Grace
|My great siblings: Matt, Kelli and Mikey|
The tide pools. Many a crab were chased....
Love the Oregon crew!!!! I adore when I get to spend time with this family. Matt, Josh and Nick are so much fun. Matt loves to tease me and it has carried on with the next generation. They get a kick out of making me laugh and squirm. I love it!
These boys are at the age where they are not too big of a fan of getting their picture taken so I am stealing some of Kelli's pics. Thanks Kel!
It is such a blessing to have cousins who treat Lila like she is just another normal cousin. Lots of loves.
|Look how stinkin cute! They only sale 3T toms on line but I found these little 2Ts at Jacks surf shop and frankly couldn't resist.|
We went to Universal Studios one day. A HUGE THANK YOU to my MOM who stayed with Lila while we went on rides. That was so incredibly nice of you. We had a lot of fun and Lila was the Biggest trooper!
Ready for Shrek 3D...
On the studio tour.
Swimming!!!! Our favorite thing to do on the trip! Lila loved it!
|J loves to tease Quinn as well. He would wear sports gear that would drive Quinn crazy and Josh loved it. It was pretty funny to watch.|
She was so gunky in the car but never complained. We just continued to use the suction machine and she tried to be as brave as possible. It is a lot of work for her to be even a little bit upright so as soon as we got her home and laid her down she was out......