Day 2 at LPCH

Riley's spine MRI was clear so we move forward with her brain surgery on Monday. It is expected to last 5-7 hours. She will have another surgery mid to end of next week to put in a Gtube and perform a fundoplication.
Tonight we were able to take her off of IV and leads and give her a wagon ride around the floor. We also enjoyed a yummy dinner brought by Derek and Amy (Jaron's bro and his wife) and a cheesecake brought by my uncle. Yum!
Kuddos to Grams and Papa who took Avery and D&A's kiddos so we were able to enjoy some time with them tonight. Avery is in heaven being with her cousins and really is no longer interested in visiting Mom and Dad. This is really the best thing for her and we are so grateful that this time is filled with fun for her.
Thanks also to my Mom and Dad who stayed with Riley this afternoon so Jaron and I could get out of the hospital for a little while. After an hour long conference with the neurosurgeon we needed a time out.
The next 2 days are filled with waiting, but I want to make them last and am not really anxious for Monday to come. I think these two days will be the last time we enjoy Riley's smile for a while.

Wagon ride!

My gifts

Today is my 31st birthday and we are spending it with our precious baby girl up at Stanford. Yesterday, after Riley's MRI, we were given the news that she has a tumor (3cm) on a delicate area of her brainstem. This was not the news we were expecting to hear and has caused me to have great fear, anxiety, and an outpouring of love for my Riley. Thankfully, I have not felt any anger. After a slow start at Kaiser we switched insurance and in January were blessed with an amazing pediatrician. We were then sent off to a great GI doctor. We have been blessed with great care since. We are now at Lucille Packard Childrens Hospital Stanford and again I am thankful that we live only 30 minutes from here and we have the best Neurosurgeon in Northern California. We have been surrounded by our family, have been blessed with an amazing community group at our church, led by our pastor and his wife, and many other wonderful friends who are pouring out love, help with Avery, and meals.

Riley will undergo another MRI scan of her spine today to make sure there is nothing more and is tentatively scheduled for brain surgery on Monday. We have to wait for the biopsy results to know her course of treatment.

More than any other monetary gift, I have been blessed with a loving husband, 2 beautiful girls, an amazing family, great friends, and more importantly a God that cares about every part of my being. What greater gifts could one ask for?

Riley's Latest

Riley was admitted to the hospital on Monday. We knew this was coming, and we are happy to get on to the next step after trying everything else up to this point with no results. The main purpose of hospitalizing her is to get food in her via a NG tube through her nose. Placing the tube was pretty rough and so far she is throwing up everything she's eating. The tube gagging her is not helping any. We will keep trying to trickle liquid food in at a slow rate and overnight to see if that works. She had another upper GI radiology study this morning, which was more succesful than the last one and showed normal anatomy, but slow gastric emptying, but we already knew that. She will get an MRI of her brain, probably tomorrow. If the NG tube does not work she will need surgery to get a more permanent G-tube placed, and do a fundoplication.
She is in great spirits while she is not being poked and prodded, so we are so thankful for that. It's hard to hear all the other kids on this floor sounding so upset.
We are also very grateful for all of our friends and family who have offered to help in so many ways and for those who have committed to praying for her.

Update

It has been 9 months of dealing with weight issues. Wow. I could have had another baby by now. Ummmm, no thank you.
Anyways - we went to the doctor today and Riley weighed in at 17 pounds, 4 oz, which is a 3 oz weight LOSS. Our doc is on vacation so we met with the nutritionist and she basically just discussed the different feeding tube options for us at this point. We see her doc on Monday to confirm her check in at Hotel Hospital for a feeding tube. We do not know what type of tube the doctor will reccommend, but I guess it is time to get some weight on this girl. We have exhausted all other paths and every test has basically come back normal. I think this is our only, and best choice right now. It is a bit scary, but mostly I am hopeful that this is a step in the right direction of getting Riley healthy.

For less than a dollar a day...

...you can make a difference in the life of a starving child. Does she not look like one of those kids from a Feed the Children commercial?? Ahh! It is so gross. Thankfully we can post this knowing that she is doing so much better. Just check out the picture below it and compare! In just a short time she looks incredibly healthy (or at least healthier than before). She is back to her normal playful smiling self and we are so thankful! We had some rough days, but we have had some great ones lately and are praying it continues. Thanks for all the prayers and well wishes!!

1/26/09

2/6/09

Cute Girls

This is Riley's lion face. When asked what a lion says, she opens her mouth wide like a roar, but no sound is made. :)

Way to go, Riley!

Riley did it, she gained 7 oz. in the past 5 days. That was enough to keep her out of the hospital. She has been doing great during the past week, eating well with minimal vomiting. She gained back the weight she lost when she was so sick, plus a couple ounces. I think the real test will be if she can keep gaining at this rate for the next couple weeks before her next weight check. We are super excited about this small victory and hopeful for continued progress.