Spring Break

Riley is really doing well. It's really amazing to be able to tickle her or try to make her laugh without worrying about her gagging and throwing up. I'm off work right now for spring break so we have been able to take a couple of fun outings...SF zoo and MB aquarium. We had a great time and you can see how great Riley looks!

Doctor visits, turning blue....just the usual

So Riley has had a few more doctor visits in last week. She saw her pediatrician on Friday and weighed in at 21 lbs 15 oz. This is almost a five pound weight gain from a month ago. I plotted it on her growth chart, and it looks crazy...an 11 month period that is totally flat, then a spike of 25% in such a short time. She also saw her Ped. GI doctor who was happy with her progress, and released her from his care and gave us some feeding advice. That's the good news.
The not-so-good news is she is back to having breath-holding spells. Her neurosurgeon predicted those would not stop, and said they were unrelated to the brain tumor. Great. She hadn't had any in three weeks following surgery, so I was optimistic...thinking they must be connected somehow. Nope, they're back. Something makes her upset, starts crying, gets worked up and cries harder, freezes on end-expiration, and does not take a breath for 15-20 seconds until she turns blue and starts to pass out. When she finally relaxes she wakes back up and gasps for breath. After having 3 on Monday we took her in for a check-up on Tuesday (she was originally scheduled to go on Thursday for a follow-up with the neurosurgery team). They said she was doing well as far as recovery from surgery, but referred her to another neurologist on the team who examined her on Wednesday and thought everything was okay. The question has been whether or not she is a having any kind of seizure activity during these episodes, which can sometimes accompany the breath holding spells. We were suspicious a couple times that they looked different, and it made us wonder, but the doctor felt like what we were describing was typical for breath holding spells and not seizure.

Run for Riley

I mentioned in an earlier post that while we were still at LPCH some student-athletes at Harker put on a "Run for Riley". When I got back to work I heard it was a pretty good event, but didn't get many details. I was just told that at the next school meeting they we tell us more about it. So Jenni and the girls were able to come with me to Monday's school-wide meeting. At the end of the meeting they ask everyone who had participated by running, or sponsoring a runner, to stand up. I stood so I could see across the gym, wanting to see how many people it was, or who all stood up. Well, I was totally shocked to see hundreds of people stand up, literally. I couldn't believe it, I had no idea the response would be so large...amazing. After a few nice words from the students that organized the event, they presented us with the money that was raised, as well as strings of 1,000 oragami cranes that students had folded. It was pretty overwhelming. The money that was raised is enough to pay Riley's medical bills...wow! The time and effort people had put in to give our family these gifts is truly a blessing to us. Plus, we got something else I've always wanted, a novelty size check, Happy Gilmore style! We can't give enough thanks to everyone from Harker who has been rooting for Riley. A special thank you to David and Arman who came up with the idea for the event, and got it organized (I hope I'm not missing anyone else). Thank you to everyone else who ran, sponsored a runner, created the 1,000 cranes, sent a card, donated, or simply shared their concern with me since getting back to work.

Sisters

Routine

I love routine. I love to know what my day has in store and what to expect. With that said, you must realize how incredibly hard the last few weeks have been for me. I am a creature of habit and I do the same things in pretty much the same order everyday. Don't misunderstand...I do have my fair share of surprises and fly by the seat of my pants sort of days, but on the whole my days usually follow a pattern. Today was the first day since going into the hospital with Riley that was a "routine" day. We had an appointment with her pediatrician this morning (more on that in a minute), but then the day fell back into a normal routine which was so lovely for me. I was struck as we played outside in the beautiful warm sunshine today how incredibly blessed our family is. We are so thankful to be together at home and that Riley is doing so well. As I pushed her in the swing and saw her huge smile I was in awe (as I am so often these days) that she had major brain surgery 2 1/2 weeks ago! God is so good! Riley weighed in today at 21 pounds, 15 ounces! ( 15th percentile) Woohoo! She is playing and walking around and unless you saw her scar for life, you would never guess she has been through this amazing journey. She is laughing and we are having so much fun listening to her. We go back to see her Pediatric GI doc on Monday and then to Dr. Edwards (neurologist) on Thursday. Riley's next MRI is scheduled for May 6th. Here are a few pics of us enjoying the Spring weather!

Walking and Playing...WOW

As Riley weens off the steroids, her sweet personality is coming through more and more. Tonight she played it the bath with Avery. It was so great to see her laughing, playing, and smiling. She has developed this laugh that sounds like such a mischevious little chuckle. After that she actually let Jenni put her down on the living room floor and she ended up walking over to me, then to her toy baskets to play...WOW. It was the first time that she has really walked since her surgery, she was a little unsteady...no suprise, since she has gained 20% of her bodyweight and hasn't walked in 3 weeks :) Her mood is still swinging back and forth though, and for every smile there's a time where she is trying to claw at her face because she wants a snack. There is definitely more and more of the sweet/happy Riley coming through every day.

Her digestive system is definitely still trying to recover too. It's hard to say how much of her trouble is related to the steroids, and how much is related to digestive difficulties. Tomorrow is the last day of the Decadron, so we will see in 2-3 days what changes. I think that has a lot to do with her huge belly and puffy cheeks. She is definately gaining weight though, she is almost unrecognizable to me...it's crazy. She will see her pediatrician later this week, and her ped. GI specialist next week to monitor her nutrition/weight/etc.

Chubby

Every time I look at her chubby face, I cannot believe it is her! I am not used to seeing a "normal" baby face looking at me. I grew so accustomed to her skinny face and cheek bones that all this awesome chub catches me off guard. She is over the 20 pound mark and doing great. We give her the last of her steroid on Wednesday. I am a bit nervous about what will happen once she is drug free, but am excited at the same time. It is hard to believe she just had surgery 2 weeks ago today. I am in awe of her recovery. She has not had any pain meds, not even Tylenol, since before we left the hospital. She is sleeping through the night, in our bed, and come Thursday will not have to take a single pill or drop of medicine. I put her myriad of drugs away in the cupboard the other night and the kitchen counter looked bare without the big basket. I hope it will stay hidden away.

Posted by Jenni

Gotta love that deximethisone. Here's a sample of Riley's typical disposition lately. Her digestive system is still adapting to get back to normal and handle the big increase in food, but otherwise she is doing really well butshe is still not back to her normal self, doesn't really want to play, and won't crawl, walk, or sit by her self--except in her high chair to eat :)

HOME

We were able to bring Riley home this afternoon. 17 days at the hospital was enough. It feels weird to be at home, it makes all the events of the last 2 or 3 weeks seem even more like just a trip to the Twilight Zone. Riley is doing well, but still has 8 days left of the Deximethisone (steroids). They are making her crazy. She is moody, grouchy, needs to be in direct physical contact with us, will not let you put her down for even a second, she swats at everyone and grunts, sometimes starts slapping herself in the face. They also make her crazy hungry so she is still CONSTANTLY wanting something to eat and keeps saying "sna, sna, sna, sna, sna,sna" (snack). She will surely gain weight no problem now, the doctor is more concerend what her eating/appetite will be like once she is off the steroids. The whole hospital stay, all the side effects, it all seems like such a small price to pay for all the live-saving care Riley has recieved. I was trying to describe to Jenni today a feeling of almost not wanting to leave the hospital...I think it boiled down to feeling like I would do anything for my daughter. Or wishing I could do more, instead of her taking the brunt of it all. It was a feeling that going home was almost a luxury and I'd stay in there as long as it took (even in a shared room with the obnoxious, belching, beat-boxing guy).

Close to getting the heck out of here

More good news as Riley was able to eat a regular diet yesterday without experiencing so much gas and bloating. No vomiting, although she is still having some pretty explosive poos. She ate a ton of calorie so that is great. The docs should be by in a few minutes and we are hoping for discharge today. We are all ready, but everything happens on "hospital time" here, so who knows if we will really get out of here anytime soon. They still have to remove her "picc line", the central IV line that runs up her arm all the way to her heart. It kind of freaks me out to think that they just slide that thing right out...weird.

There is also a "Run for Riley" happening at Harker today. It was organized by some of the student-athletes as a way to support Riley and our family. How awesome is that? I'm really hoping to get Riley home so I could stop by the school and see what's going on.

Pilocytic Astrocytoma

Very good news today. The final pathology report came back today, confirming that the tumor was a low-grade pilocytic astrocytoma. That means there is no other treatment that needs to be done right now, it just needs to be monitored to make sure it does not continue to grow. There is still some of the tumor remaining, that could not be removed. This could either (A) go dormant, (B) recede/get smaller, or (C) continue to grow. Before they performed the surgery they said if they could get 90% of the tumor, there would be much less chance of it recurring. Since they did get 90% or more of it, we are hoping the chances of it returning are small but we don't know exactly. She will need an MRI every three months at first to monitor it, and they will follow her many many years it sounds like.

Okay, so it's been 15 days of living in a hospital...but the worst of it is over, just finishing out her recovery now. The latest silver lining of being stuck in the hospital is that because of Riley's digestion distress they took a stool sample to test for some kind of potential bacterial infection, this could potentially be contagious, so Riley has had a "contact precaution" for the last couple days. This means she can't be in a shared room...bummer! So we got upgraded to a luxury suite, a private room with a recliner, rocking chair, bathroom, etc. So nice. The test turned out negative, so we are keeping our fingers crossed that they don't ship us back to where we were last.

On another note, Avery seems to be doing great. I really thought by this many days in she would be more out of sorts, or more homesick. She has bounced around staying with two sets of grandparents, an aunt/uncle/cousins, and she has adapted well. She probably thinks she is on vacation. She knows Riley had an owie on her head, but hasn't seemed to mind seeing her all wired up and scarred...she is so sweet to little Riley, and she really does "rock".

Just in case you really wanted to see Riley's incision.

Riley is trying to work back up to a regular diet after having so much bloating and trouble with eating anything and everything the first time around. She's be eating "clear" stuff the last two days...Jello, broth, and some sorbet type stuff that she loves.

The view from here

As Jaron previously posted, it has been a rough 2 days. Riley is still struggling with bloating, gas, diarrhea, and horrible discomfort. She is not able to eat and the poor girl's butt must be hurting like crazy from so many diaper changes. I feel so sad for her and the hardest part is we cannot really do much to comfort her. I have been feeling so frustrated and since I am already sleep deprived my patience is thin. I am ready for her to be better, to be home in my own bed, and back to a normal routine. I have cried too many times to count over the past 2 weeks and am ready for this to be a distant memory. I just want her to be well.

I have been so thankful for all the help, but have to spend a few moments on thanking my incredible parents. They have supported us in many ways and have been the main caregivers for Avery over these last weeks. They have been so flexible in driving Avery back and forth to see us, changing plans to accommodate what we need, doing laundry, taking us out for meals... pretty much doing anything and everything we ask. I really do not know what we would do without them. We love you Mom and Dad and are so grateful for everything you do!

Rough Night

Riley has been having a rough time since mid day yesterday, she has an insatiable appetite/thirst...and CONSTANTLY wants to be eating and drinking. They said she could have whatever we wanted but we have tried to limit her because she would get out of control. Now she is all "bloated" for lack of a better term (ileus?)...a side effect of all the anesthesia (3 MRI's and her surgery) and the narcotic pain meds she's gotten since surgery. So now she can't eat or drink anything til that sorts itself out. They x-rayed her belly this morning to make sure that's all it is. She was up all night whining in discomfort, and asking for her cup or a cookie the whole time. Finally Jenni and Riley both fell asleep about 10am, hopefully they will sleep for a while, then were supposed to get her up and about to work out some of that air out of her gut.
The good thing...even with stuff her face, she has not vomited. Wow. I'm still hoping she can avoid another surgery.

Out of the PICU...on the road to recovery

Last night, Riley had a blood transfusion and her heart rate was super low so it was a busy night. I slept from about 10pm until 3am then went to relieve Jaron at Riley's bedside. He was able to sleep a little bit, but I can tell he is super tired and still very stressed. The neurology team came by this morning and removed Riley's bandage (pic later). It looks a bit scary, but they said it looked good. She is able to move around as much as she can tolerate and eat and drink what she likes. She drank so much this morning that her stomach is a bit distended. Hopefully the nap she is taking now and a break from her cup will make her feel a bit better. She is loving the pacifier they gave her which is so weird because she never took one before. We are blaming it on the tumor. I think from now on, we will blame everything on that nasty tumor! :)
We were moved out of the PICU this morning and back up to 3 South. It is much more comfortable and less stressful. There are not as many beeping monitors to freak us out. We will stay up here for a few days to count her calories and if she can do it on her own without throwing up, we should be out of her by early next week. Her GI tube and fundoplication surgery is on hold for now until we see if she can manage on her own. Please pray for that! We would love if her body could just snap back to normal and she could aviod another surgery. We are still waiting on the pathology report. Hopefully in another day or two we will hear the final word.
On another note, I have been so incredibly awed by the support and outpouring of love we have received. It brings me to tears just thinking of how many people care for our family and are engrossed in her story. It is amazing to feel so cared for. Throughout this journey, adjusting to hospitilization, the fear of the unknown when hearing about the tumor, coming to grips with the reality of Riley's diagnosis, waiting and then seeing her through surgery, and starting our road to recovery, I have had my moments of fear. But overall I have felt a peace. I know who is in control and I have chosen not to fight with that. I trust in the doctor's care. All that is left for me to do is hold her hand, snuggle her up, and tell her I love her.
I have been so thankful to have friends and family who have given me breaks, provided us with food, given us items of comfort, and I am really grateful for caffeine. :) I feel good about the direction we are headed in and will face each day with optimism and a desire to get her 100% healthy. I am looking forward to hearing her laugh without coughing and gagging, screaming with joy, playing hard with her sissy and not worrying about her falling and stopping breathing... to enjoy her childhood without great fear will be a fantastic gift.

Quick update:

Riley is doing pretty good. She past her eat/drink/swallow food test that the occupational therapist gave her, and she freaked out when the applesauce came out...she was ravenous, and we had to prevent her from guzzling the juice way too fast. The poor girl must have been so hungry and thirsty. They have been monitoring her sodium levels very closely (they want to keep them up to keep pressure in the brain down) and also her hematocrit, which has been low. They finally decided it was too low and she will need a blood transfusion, a small amount, maybe 100 or 150 mL, which she will probably get tonight.
What else...
-1 more day in ICU
-more talk about whether she needs another surgery (fundoplication and G-tube for feeding).
-some days in a "regular" room to recover
-she needs to start eating and drinking, and most importantly, not vomit
-she needs to sleep...she keeps fighting it and the ICU has a lot of activity.

To follow up on Jenni's post, the little baby that was getting a transplant was so sweet and I was praying for her...but Jenni was not joking, her father was totally annoying

Trying

Since we have been here at LPCH I have been super sensitive to patients and their families. There are so many sad things here and my heart has been so full of love for everyone I have come into contact with. I have found myself being pretty understanding and patient for all that goes on here...until tonight. We are in a 4 patient room only seperated by curtains. There is a family next to us whose daughter is very young (younger than Riley) and is going to be undergoing a transplant of some sort. When I first got here to relieve Jaron she was screaming, but it really did not bother me. I felt for her and her family and was sympathetic. Now it has been about an hour and the dad has yelled at the mom a few times, is burping very loudly and extending them out in a very gross way, and is beatboxing in a very annoying fashion. Yes, I am at the end of patience. It's going to be a long night.

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.

The Whole Story - a summary

For people who haven't been following Riley's story, here is a summary of her journey so far to get you caught up. I've also imported posts from our family blog to serve as a diary of sorts to detail her journey to this point.

After months with only a diagnosis of "failure to thrive", on Thursday 2/26/09 she was diagnosed with a brain tumor on her Medulla. On Monday 3/2/09 she underwent brain surgery, to remove as much of the tumor as possible. This introduction is being written the same week of surgery, while Riley is still recovering in the pediatric intensive care unit.

The story really starts back in June of 2008 when we first noticed she was having trouble gagging and vomiting food up occasionally after eating. Her weight at 9 months old was 18 lbs 5 oz. 8 or 9 months later, priory to her diagnosis, her weight had slowly dwindled to 17 lbs. 3 oz. She also started having breath holding spells where should be turn blue and pass out...talk about scary! Here is an excerpt from our blog from back in September, that really sums up how we were feeling at that time.

"I took Riley in for her 1 year appointment today. I have been a bit concerned about her weight for a few months now. She is not a picky eater and eats well, but she chokes and coughs during meals and 3 out of 4 times she throws up her entire meal. In March, she was in the 70th percentile for weight. In June, she was in the 45th, and today she fell down into the 14th. She has gained 1 pound in 3 months. I feel like I am constantly thinking about her intake of calories and offer her a ton of food. This is SO unlike Avery who has always been in the 95th percentile. (Riley weighs what Avery did at 6 1/2 months!) This has been so mentally exhausting for me. I do feel that because she is so happy all the time, sleeps through the night, and nurses well nothing too serious can be wrong. Her pediatrician is not all that concerned, but wants another weight check in a month. There is a possibility of reflux, which can be helped with medication so I need to do some reading and watch her for the next week or so. We will keep you updated."

At this point, we were at Kaiser, and we took Riley back in to push the doctors to help us make more progress. We ended up having some blood tests, stool tests, and were referred to the gastroenterology dept. There we saw a nurse practitioner who started her on medicines for reflux, and kept telling us "try this for 30 days, then come back". Eventually she had an upper GI test that showed "reflux", but we already knew should could not keep stuff in her stomach, since she was vomiting so much. But the focus stayed on reflux, and we kept changing up her cocktail of medicines. By December she had made no progress, and finally recieved an upper endoscopy to check her anatomy and for signs of food allergy. Everything was normal.

In January we switched health insurance, hoping we could find a pediatrician who would be more invested in our daughter's health and would actually want her to get diagnosed (That doesn't sound like to much to ask from your pediatrician, does it?). Well we found one, and right away we felt so much more comfortable knowing our daughter had someone who was actively trying to figure out what she was dealing with. Some interesting results to a couple blood tests raised some flags, and lead to discussion of a particular genetic disorder that was later ruled out. The potential implications of that caused some roller coaster emotions.

Also in January we started seeing a new Pediatric Gastroenterologist who ran another battery of tests, to rule out some things that Kaiser did not. Nothing came up. After a couple visits we ask him how he felt about her weight and he said he was "panicing". That's not always what you want to hear from your doctor, but it actually made us feel good to know that someone else was as concerned about Riley as we were and would help her get better. He gave Riley a deadline to try to gain weight or be hospitalized. The first time she gained 8 oz in 5 days, and we had hope. Then she lost it all again, and we knew the next step was a feeding tube.

The last week of February, Riley was admitted to Good Sam hospital in San Jose. The idea was to try a NG tube down her nose to feed her that way but she continued vomiting profusely in the hospital. Since that wasn't working we started talking to the surgeon about doing a fundoplication surgery to wrap the top of her stomach to prevent vomiting and insert a G-tube through her belly to feed her through. We also saw a neurologist while in the hospital, and after hearing her history said it would be a good idea to get an MRI of her brain just in case there was something neurological going on. This wasn't sounding too likely though, given that her development had been totally normal. We had tenatively scheduled surgery for the following Monday, assuming the MRI would come back normal, ruling out anything neurological. Well, the MRI did not come back normal. There was a mass on the brainstem. Our daughter had a brain tumor. That was not the diagnosis we were expecting. But it was a diagnosis. FINALLY.

Before our Ped. GI doctor even told us what had been found the ball was already rolling to transfer us to Lucille Packard Children's hospital at Stanford. We were already being sent to see Dr. Edwards, who was the best pediatric neurosurgeon around. We didn't have to make a single decision, before we knew it, Riley was being transported by a team from LPCH and we were at the best possible facility talking to the best doctor.

I hope this gives you some history, you can pick up Riley's story from here by following the blog posts starting in 2/23/09, or go back farther for more history. Thanks to everyone reading this who have rooted for Riley and prayed for her recovery.

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 (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.

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.

Update on Riley

I am just doing a quick post since today has been an especially rough day.
Jaron took Riley to see her new pediatrician yesterday, Dr. Vereschagen. She weighed in at 17 pounds 10 ounces. She had a chest xray and some bloodwork done. Jaron said she did such a good job. The doctor called us that evening and told us her chest xray was clear...no signs of inflammation or asthma. Her calcium levels came back high so we are being referred to an endocrinologist at Stanford to have some further testing done. We are also being referred to a pediatric GI.
For now, she will continue her prevacid tablets (for the reflux) and we have to try and get 400 extra calories in her per day. This, of course, is easier said than done. We are pushing the pediasure, but with the throwing up, I am still having a rough time.
Pray specifically for gaining weight and a decrease in her throwing up.
Pray also for my sanity.