Stealing the schedule

Today is a new day. Today is the day I stop eating everything in sight, particularly frozen yogurt, cheesecake, pretty much all sweets in general. I think, actually I know, that my eating has been out of control since mid-February when Riley went into the hospital. We were blessed with a ton of food brought by a ton of people most of which included some kind of treat in the mix. I also had a Starbucks white mocha almost every day Riley was in the hospital. I literally gained 8 pounds. My clothes are a bit snug and I feel like it is time to put things back in order.

My friend Charlie made a schedule of sorts for her two kiddos to see what the week would look like for them. I stole the idea, thanks Charlie!, and now it is in print so Avery can help me be accountable as well. I included daily activities such as watering the garden, a walk, and playing on the swing set, and weekly activities such as Avery's ballet class, church, and a trip to the library.

I am also writing down everything I eat. I did Weight Watchers for a few months after Riley was born and used their online program to keep track of everything. It worked so well for me to see it all in writing. I am not going to sign up again, but I am going to keep a journal.

I worked out this morning, walked to the Library, and have written down everything today and I already feel so good. I feel happy. It feels great to have some control again and feel like a good mother by focusing on both of my kids rather than stressing over throw up and brain tumors.

So, I am not depriving myself, but am not indulging in everything. So, if you see me with a treat in one hand a Starbucks in the other swat them to the floor and give me the stink eye.

SF Zoo

MB Aquarium

Tuesday was the final day before our aquarium passes ran out so we had to take advantage. Luckily, the weather was gorgeous! The girls had a great time. Avery and Riley both loved seeing and touching the seastars. We ended the day witha meal at Bubba Gumps. Yum!

I am so over this

This is what Riley would have said to me if she could every time I tried to put her in her highchair these last few days. It is a battle with this stubborn child! I think she has finally decided to be a "big girl" and she wants to sit at the table in a chair. Today we tried it and instead of a battle I got this wide grin taunting me as if to say, Ha ha, Mom, I won!

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

Treat Fund

We were in complete shock to receive some money from some very special people to be used as a treat for Jaron and I. Amy, my absolutely amazing and kind-hearted sis in law, put out a request to help bless us as we went through this stressful time. We are thankful for these people, some of who we do not even know, and are appreciative of their generosity and selfless giving. A big THANK YOU to:

Derek and Amy (and kiddos)
Diane and Bob Massey
Kurtz Family
Brian and Stephanie Fuehrer
Dana Olson Fam
Carey Olson Fam
Moore Family
Wilson Family
Martin Family
Chuck and Debbie
Ray, Bev, Jonathan and Justin Massey
Lynnae and Chris Hoff
Harney Family

You guys ROCK!

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.

Gotta love that deximethisone.

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).

Run for Riley

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.

Another good day

More good news as Riley was able to eat a regular diet yesterday without experiencing gas and bloating. No vomiting and she ate a ton of calories so all are happy here. The docs should be by in a few minutes and we are hoping for discharge today. We are all ready.

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.