Thanks to a very thoughtful friend (maybe more than one) Jeremy and I were surprised to a night out on Saturday! Scott made reservations at a great restaurant in Memphis called Iris. We even dressed up a bit to make it a little more special! The food was amazing and we ate so much we actually had to come back after dinner due to a much needed unbottoning of the pants....surprise surprise, little miss Avery was still awake and hanging out with her buddy Scott. It was a much needed break and made us feel a little more normal. Thank you!!
Avery is getting really strong at pulling herself up now. The crawling stage may be skipped all together as she doesn't appear that interested in her knees. We'll see. She was able to play down in the play area a few times this week when we were inpatient and that helps in her strength training. She has a blast pulling herself up in the crib as well!
Aunt Jonnelle is arriving tomorrow and we can't wait! She is flying all the way from MN to see us. We personally think it has something to do with the nicer weather down here....giggle giggle. We will go back inpatient on Tuesday night and be there for the icky chemo drugs until Friday or Saturday. In the mean time, she has started the appetite inducing, Periactin and let me tell you that stuff works. She goes from normal to starving in 30 mins. Good for us as she is up to 8.4 kilos and we are going into the pukey stage. Hopefully we'll be able to manage the sick feeling enough for her to eat and maintain her weight this round. We'll see....if not, at least she is a little heavier than 2 weeks ago.
Well, off to bed we go....yes she is still up and sitting in my lap. 10:48 pm.
Love Jenn & Avery
Avery's Journey - Childrens Brain Cancer
Sunday, March 28, 2010
Friday, March 26, 2010
Jeremy and Scott
Wednesday turned out to be a much better day. Avery started Chemo that afternoon and finished it up yesterday evening. She will continue with fluids until all is flushed out of her system. Hopefully we'll be able to leave at a decent time tomorrow.
Scott arrived on Wednesday evening and to my surprise took the bus to the hospital. The nurses were in shock by this as the bus is NOT the safest mode of transportation. But he arrived unscathed and camped out in the broom closet for the night. Yesterday I was able to slip back to Target house to shower and then Jeremy flew in around 7 pm. The boys stayed at the hospital last night with Avery and I slept at the Target House...my first night away from her. I of course woke up from nightmares and decided maybe I'm not ok sleeping away from her.
Jeremy and Scott are headed to Beale street this afternoon to eat some fried hamburgers at Dyers. We went with Mom & John a few weeks ago, but Jeremy wasn't here so he missed out. Tonight we have some exciting plans to watch Happy Feet...silly I know but I really want to see it, so guess what -- Jeremy is so thrilled.
Miss Avery is doing great -- getting a little anxious as we don't have a mat to play on the floor on. She is much more active than the last time we were inpatient so we are having a tougher time keeping her happy as she wants to move! We did finally get out of Isolation last night so today we'll be able to roam a little, which will help. Kicker the dog was here last night and we were able to pet him, I think it was more therapeutic for me than Avery, but we sure enjoy that!
Well, I am going to sneak out and grab something to eat from the cafeteria while the munchkin is snoozing....more to come later!
Love,
Jenn
Scott arrived on Wednesday evening and to my surprise took the bus to the hospital. The nurses were in shock by this as the bus is NOT the safest mode of transportation. But he arrived unscathed and camped out in the broom closet for the night. Yesterday I was able to slip back to Target house to shower and then Jeremy flew in around 7 pm. The boys stayed at the hospital last night with Avery and I slept at the Target House...my first night away from her. I of course woke up from nightmares and decided maybe I'm not ok sleeping away from her.
Jeremy and Scott are headed to Beale street this afternoon to eat some fried hamburgers at Dyers. We went with Mom & John a few weeks ago, but Jeremy wasn't here so he missed out. Tonight we have some exciting plans to watch Happy Feet...silly I know but I really want to see it, so guess what -- Jeremy is so thrilled.
Miss Avery is doing great -- getting a little anxious as we don't have a mat to play on the floor on. She is much more active than the last time we were inpatient so we are having a tougher time keeping her happy as she wants to move! We did finally get out of Isolation last night so today we'll be able to roam a little, which will help. Kicker the dog was here last night and we were able to pet him, I think it was more therapeutic for me than Avery, but we sure enjoy that!
Well, I am going to sneak out and grab something to eat from the cafeteria while the munchkin is snoozing....more to come later!
Love,
Jenn
Tuesday, March 23, 2010
frusterated...
Today was absolutely beautiful in Memphis! 74 degrees and sunny....even 71 degrees at 8:30 pm! Avery had a day of appts followed by being admitted for round 3 of Chemo.
I have to admit, I did not have the greatest of days myself. For those of you that really know me....ok if you know me even a little, you know I prefer the organized, planned out way of life. In St Jude world...that does not exist. Expectations are rarely met when you want them to be and your day is never what it was supposed to be. They hand out these nice little schedules every morning when you get to the hospital. These are meant to be used as GUIDELINES...not schedules, even though they call them schedules. This means that your 11:15 am appt to see the Dr prior to being admitted could very well take place at 2:45pm and no one will apologize or even acknowledge that they are seeing you 3.5 hrs after they guideline said you would. Uh...hello, I have a baby that needs a nap, playtime, bottle, diaper change -- insert whatever mommy thing you need to do that isn't always easy when you are stuck in a waiting room. I've gotten used to waiting as it is usually due to sick kiddos bumping your place in line when they are sick. I of course want the same privileges when Avery gets sick so I can handle this one. What I am having a terrible time trying to figure out is why they Scheduled us for admission at 1 pm and then tell me to come back at 8 pm. If I'd known that, maybe I wouldn't have stayed up late packing for our in patient trip when I could have come home after our appts and done it! ARGG.....needless to say, I had a few choice words with our interim Nurse Practitioner (poor thing) and then a couple of "crazy mom" conversations with the night nurses on the floor once I got here. I think I have officially pegged myself as the crabby, crazy mom whose kid is still awake at 11 pm...and yes she is still awake right now.
Good news is Avery is getting much stronger now...as a matter of fact, she is attempting to crawl out of her crib at this very moment. Great. And I think Front Tooth #4 is coming in finally. She now loves Lay's South Carolina Tangy BBQ chips....her first actual potato chip. She has accumulated some new skills as well. She can wave bye bye, clap her hands together, and throw a nice little tantrum. All of these she does at random, never when we want her to of course!
To top off our great day we add an oopsy mistake that has landed us back in ISOLATION. Yes, apparently at the end of February when they finally cleared us of all our infections and let us out of isolation (after 18 days) they made a mistake. A culture grew and showed that she still tested positive for the Adno virus. Yes this was a month ago. And yes we've been walking around possibly infecting other kids...ok not really, it's in her poo and she luckily doesn't play with her poo and share it with friends so we should be fine. But still. Back into isolation we go. ugh. It's been a rough day for mommy.
On the bright side, Scott Steffes will be here tomorrow evening to help us out. This will be a much needed distraction for the both of us! It is also Aunt Nikki's Birthday....So Happy Birthday Aunt Nikki! We love you! It's hard to believe that we are starting round 3 already. We are a third of the way there, only 4 more months till we are able to come home to Kansas City and see everyone. Boy we can't wait!
Love from a slightly wound up,
Jenn
I have to admit, I did not have the greatest of days myself. For those of you that really know me....ok if you know me even a little, you know I prefer the organized, planned out way of life. In St Jude world...that does not exist. Expectations are rarely met when you want them to be and your day is never what it was supposed to be. They hand out these nice little schedules every morning when you get to the hospital. These are meant to be used as GUIDELINES...not schedules, even though they call them schedules. This means that your 11:15 am appt to see the Dr prior to being admitted could very well take place at 2:45pm and no one will apologize or even acknowledge that they are seeing you 3.5 hrs after they guideline said you would. Uh...hello, I have a baby that needs a nap, playtime, bottle, diaper change -- insert whatever mommy thing you need to do that isn't always easy when you are stuck in a waiting room. I've gotten used to waiting as it is usually due to sick kiddos bumping your place in line when they are sick. I of course want the same privileges when Avery gets sick so I can handle this one. What I am having a terrible time trying to figure out is why they Scheduled us for admission at 1 pm and then tell me to come back at 8 pm. If I'd known that, maybe I wouldn't have stayed up late packing for our in patient trip when I could have come home after our appts and done it! ARGG.....needless to say, I had a few choice words with our interim Nurse Practitioner (poor thing) and then a couple of "crazy mom" conversations with the night nurses on the floor once I got here. I think I have officially pegged myself as the crabby, crazy mom whose kid is still awake at 11 pm...and yes she is still awake right now.
Good news is Avery is getting much stronger now...as a matter of fact, she is attempting to crawl out of her crib at this very moment. Great. And I think Front Tooth #4 is coming in finally. She now loves Lay's South Carolina Tangy BBQ chips....her first actual potato chip. She has accumulated some new skills as well. She can wave bye bye, clap her hands together, and throw a nice little tantrum. All of these she does at random, never when we want her to of course!
To top off our great day we add an oopsy mistake that has landed us back in ISOLATION. Yes, apparently at the end of February when they finally cleared us of all our infections and let us out of isolation (after 18 days) they made a mistake. A culture grew and showed that she still tested positive for the Adno virus. Yes this was a month ago. And yes we've been walking around possibly infecting other kids...ok not really, it's in her poo and she luckily doesn't play with her poo and share it with friends so we should be fine. But still. Back into isolation we go. ugh. It's been a rough day for mommy.
On the bright side, Scott Steffes will be here tomorrow evening to help us out. This will be a much needed distraction for the both of us! It is also Aunt Nikki's Birthday....So Happy Birthday Aunt Nikki! We love you! It's hard to believe that we are starting round 3 already. We are a third of the way there, only 4 more months till we are able to come home to Kansas City and see everyone. Boy we can't wait!
Love from a slightly wound up,
Jenn
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