She's awake----mostly

They thought Riley was doing good enough and breathing well enough on her own that they could extubate her. They turned down all her sedation meds and she woke right up, then they removed her breathing tube and she cried right away and starting calling for "Ma-Ma"....SOOO good to hear her talk, especially after they warned us it was possible she wouldn't talk for a while. Eventually she said "Da-da" too, so I'm loving that...even if it is a 20:1 ratio of mama to dada.
She looks pretty rough, like she's been through the ringer...but considering all she has been through she is doing great. I'm sure she will be groggy for quite a while and have some pain to try to treat, she will be in the ICU 1 or 2 more days. So Jenni and I will try to take shifts being at her bedside. I hope she will continue to to recover quickly and that her pain level will not be too bad...I just hate to see her grimmace and wiggle around in discomfort.

It looks good

Riley's MRI came back and it looks good. The brain stem has expanded and looks more normal and where the tumor once was, is now open space for spinal fluid to flow. She still has her breathing tube as of now (1:35 pm), but by 2pm they will turn off the oxygen completely so she will be breathing on her own and by 3pm she should be extubated. It is hard to sit in the ICU and wait, but we are anticipating holding our baby girl in just a few hours.

Repeat MRI

9:40 am - Riley is having her repeat MRI.

Last night Jaron and I were able to stay at a nearby hotel and get some rest. Riley was sedated and being well taken care of in the PICU so we felt good leaving her and followed doctor's orders to take care of ourselves for the night. Jaron's boss, Dan, and the Head of Harker upper school, Butch, came and took us out to dinner last night. We are so thankful for our Harker family and all they have done and will continue to do for us. What a blessing that we are a part of so many lives. We had a good night of rest and will start taking turns being with Riley in the PICU once she is awake and extubated.

These pics are of the night before Riley went down to surgery. :)

PICU

The report from the doctor was that the surgery went well today. It took about 6 hours and they were able to remove the majority of the tumor, probably greater than 90%. There was no evidence during surgery of any nerve disruption, and no surprises or obvious complications.
Riley is now in ICU and still sedated and intubated. The ICU is a stressful place to be, Riley has so many IV's, monitors, wires, tubes, etc. All the beeping and alarms will freak you out in a hurry. Tomorrow she will have an MRI of her brain to get an "after" picture and hopefully be extubated by the end of the day/night. Time to try to get some sleep.

Surgery Timeline

2:15 The first report from the surgery team is that everything is going well so far, it appears to be a "low-grade" tumor (that's good) and they are making good progress on the resection. We are trying hard to distract ourselves, but I feel like I'm going to end up with an ulcer!

12:03 They told us at 12:03 that they had just started operating.

10:20 Jenni and I sat with Riley in pre-op this morning until they gave her a "twilight" drug and took her back to start prepping her for surgery about 10:20 or so. They said it would take about 90 min. to get her all ready. They should be telling us soon when they actually begin surgery.

Waiting

Doesn't she look so much different with some fluids and food in her?

Today, for me, has been filled with a sense of waiting for something to happen. It is nice to just sit here with Riley, but it feels like it is just the calm before the storm. The later in the day it gets the "heavier" and closer it starts to feel. It will be the last time I hear her say "Da-da" for a while. She will be sedated for at least 36 hours or so (surgery ~8hrs, then still sedated for another 24 hours or so of her initial recovery time). I think the next few days will be especially long and hard, but I have faith that God will care for my (and his) sweet baby girl, Riley.
I also want to thank everyone who has called, emailed, prayed, texted, commented on the blog...it is all so encouraging. If you haven't heard back from us, believe us when we say it is still appreciated. With so many people following her journey, it is hard to communicate with everyone, so we will continue to use the blog to post updates.
To give you an idea of tomorrow, I think they will take her down about 6:30 am tomorrow, begin prepping her at 8:30, and operating around 10:00. Thanks for your prayers.
Jaron

Day 3

Yesterday was a pretty non-eventful day. We just had a day of counting calories and resting. Riley has been on IV fluids and she was on lipids all day yesterday and continues today. She is also on a steroid to help reduce swelling. I think the combination of all of these has made her look so good. She has gained over a pound since we have been here and it is easy to see how much fuller she looks. She just has a healthy glow about her since she is actually nourished and hydrated. She continues to be able to eat on her own and has not thrown up at all. This is probably due to the steroid which relieves pressure and swelling near the brainstem and causes a decrease in nausea and vomitting. Yahoo!
She was so happy yesterday. We went on a few wagon rides and she was visited by a physical therapist who blew bubbles and tossed a ball back and forth with her. Once she warmed up to him she was all smiles.
A friend of Jaron's came by and brought the girls a gift and also brought us lunch which was awesome. The last time I had eaten lunch was on Tuesday. You rock, Evan! Our dear friends, Bob and Glenda, and baby Ella of course, came for a short visit and brought us delicious chinese food for dinner and super yummy chocolate cupcakes. After that I headed home for a bit to spend time with Avery. I made her dinner and she then devoured a cupcake! She would have probably ate the entire box if I had let her. She helped me clean up a few things and then I gave her a bath and put her to bed. The few hours I was home made me feel a bit normal and gave me joy in being able to participate in the simple things with my beautiful Avery. She had been such a trooper and though she does not understand what is truly going on (she thinks Riley is sick and at the hospital for blood tests) she has been patient and loving every step of the way.
Today will be another low key day, but the prospect of tomorrow is starting to bring fear into my mind. I know she is being uplifted in prayer by literally thousands of people and I know she is in the arms of Jesus who will be laying right next to her during surgery and will never leave her side.

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." Romans 5:1-5

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 (2cm) 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 20 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.

Super Easy Dinner...and that is exactly what I need.

I made this tonight for dinner and it is seriously one of the simplest and yummiest meals. I am in major need of simple these days so this Slow Cooker Chicken Taco Soup is a new favorite.

1 onion, chopped (I, of course, bought it already chopped)
1 (16 oz) can chili beans
1 (15 oz) can black beans
1 (15 oz) can whole kernal corn, drained
1 (8 oz) can tomato sauce
1 (12 fl oz) can or bottle of beer
2 (10 oz) cans diced tomatoes with green chilis (I actually only used 1) undrained
1 (1.25 ounce) package taco seasoning
3 whole boneless skinless chicken breasts

1. Place all ingredients, except the chicken, in the crock pot and stir to blend. Place the uncooked chicken breasts on top of the mixture, pressing down slightly until covered by other ingredients. Cook for 5 hours on low.
2. Remove chicken breasts and shred then stir back into the soup. Cook for another 2 hours on low.
3. Serve with a dollup of sour cream, shredded cheese, and tortilla chips.

This makes a lot of soup, probably 8 servings, but more like 5-6 in this house.
I like things a bit spicy so I thought it needed a bit of a kick, just f.y.i.
Amy, you can leave as is. :)

Tahoe Trip

We were lucky enough to be able to take a trip to Tahoe from Sunday to Wednesday. My parents came along with us and we stayed in their friends cabin right at the foot of Heavenly. On Sunday we were lucky enough to see the snow fall and woke up on monday morning to a beautiful blanket of snow. It was so fun to see how excited Avery was! We were all really excited to just be there! We were blessed with perfect weather. We hung out and sledded on Monday, then Jaron and I went snowboarding/skiing on Tuesday at Sierra at Tahoe. The day was gorgeous! We are so lucky to have gone at the perfect time and so thankful to my parents for setting it up and watching the kiddos so we could have a break! We are ready to go right back up!!

Snow fall on Monday morning

Snow bunny Riley

Grandpa and Avery

Whoa!!

On the chair lift ready to hit the slopes!

Jaron boarding down the mountain.

Exhausted!

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.

A new post because we need one

I have no pictures to show or much news for that matter, but I needed to post something! We have all been coping with sickness here in the Olson home and are now finally feeling normal again. The stomach flu made its way through the house and blessed each one of us with a visit. How lovely! Riley and I were also lucky enough to get bad colds. I feel as though my house needs to be disinfected and aired out.
Riley visited the GI doctor and we have 5 days to gain 5 ounces or she is headed for the hospital and a feeding tube. We are stuffing her face and so far we have been successful. She has been eating well and drinking her nasty pediasure so I am hopeful. She only threw up once on Thursday and did not throw up at all yesterday! Pray for 3 more good days.
Avery is as sweet as ever and loves on her sissy so well. She is just so protective of Riley. I signed her up for Preschool in the fall and she is excited about that. She will also get to take swim lessons at Harker in the summer and I think I am going to sign her up for ballet lessons in the spring. Lots of fun is coming her way!
Once I am 100%, I am going to try and get back to my spin classes. My dear friend, Sarah is getting married in May and so that is my new goal date for getting to where I need to be. :)

Riley

More doctor visits for Riley this week. Tuesday she saw her pediatrician again, who started her on some inhaled medication and a cough suppressant to try prevent some of her coughing fits (these often trigger vomiting). It seems like it may be helping a tiny bit, it's only been a couple days. Today she saw another GI specialist. He seemed to think Kaiser had not ruled out food allergy/celiac disease completely...so more stool and blood tests. He also helped us with some feeding strategies and supplement/medication advice.
Last week her pediatrician brought up a pretty serious condition as a possible diagnosis, that was pretty heavy and has caused some stress. After consulting the endocrinologist further, that now seems like a less likely diagnosis based on where she is developmentally.
Combined with her breath holding spells, all of this has been pretty nerve-wracking...but we are hanging in there.

Birthday Princess

On Monday the 12th, we celebrated Avery's birthday Tinkerbell style. We had everything Tinkerbell and Avery loved it! We had our playgroup friends over along with a few other friends and we had a blast. It was so fun to see Avery having so much fun. I cannot believe this little girl is 4 years old aready. It has gone by so fast.

Avery still loves everything girly and when asked her favorite color it remains to be pink and purple. Anything glittery and sparkly is sure to make her smile. She still remains a bit shy at first, but as soon as she is comfortable is a complete goof. She loves to tease her daddy and says the most hilarious things, most of which he has taught her to say. Example:

Avery: "Guess What?"

Me: "What?"

Avery: "Chicken butt!"

This is then followed by much laughter.

She loves imaginary play and can keep herself occupied for a long time making up stories. She is in love with her sissy, and though she still can be a bit jealous and selfish, especially when it comes to time with Grandpa, she is very protective of her. She just told me today that she loves her just the way she is. How precious and sweet! Oh how we love our beautiful Avery Lynn!

On Tuesday, her actual birthday, we started the day off with presents, and pancakes with frosting and m&ms made by daddy. We then went and spent the day in Gilroy with my parents as Jaron had a night of basketball games to cover. When she went to bed that evening, she asked, "How old am I going to be next?" I said, "5." She then giggled loudly squealing, "Oooh...I'm going to be 5!!" How's that for living in the moment?