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 :)