Happy Mother's Day to everyone! We are spending the day at the Grizzly House as Avery has been put back in Isolation for C Diff again. She also has low counts so we can't be out in public at this point. I got to sleep in a tiny bit today and Avery gave me a fabulous new pair of behind shaping tennis shoes. I've been talking to all the nurses about these shoes for the last few months and they swear they work! I can't promise a fabulous tooshie by July, but I am sure going to try! Jeremy arrived on Friday and was just in time for the C Diff discovery and our move to the Grizzly House. Thank goodness he was here, as she technically can't go to the Target House....and I can't leave her in the car while I pack up a few things to take! She is doing ok this weekend. Counts being low make her feel crummy and C Diff can take a toll on the tummy as well. So far she really isn't exhibiting symptoms of the C Diff, but you can't be too careful.
This week will be a busy one as we start off with an early morning brain stem auditory test at 7am tomorrow....apparently they forgot my request to not have appts at the butt crack of dawn. Good thing Dad is here. We also have our MRI and Lumbar Puncture on Thursday. Avery's counts have to be at least 500 in order to do those, so pray they go up in the next 3 days and we can stay on track.
Uncle Rob arrives on Thursday and will be here through the weekend with us and we can't wait to see him! He always makes us laugh! Well I better get back to things....We hope everyone has a fantastic Mothers Day -- you all deserve it!
Jenn
Avery's Journey - Childrens Brain Cancer
Sunday, May 9, 2010
Wednesday, May 5, 2010
Tuesday, May 4, 2010
Puked on again...
The last two days have been rough ones to say the least. Avery has been a slightly unhappy camper, as would any of us be if we had been filled up with chemo while cutting molars in all areas of our mouths. Thankfully Nana Lori has been here to help out. As of tonight we have now done the puke and rally routine twice, one of which included vomiting right down the front of mommy's shirt. I'm talking inside the shirt people -- ewww....luckily it was only apple juice and pedialyte as she hasn't eaten much today. I had to give her credit though for choosing apple juice over Ensure -- she wanted nothing to do with that stuff tonight, thank the lord. For those of you that know her, she tends to be a very happy little girl, always on the go and pretty laid back. Today she was not that child. I saw tantrums over things she wanted and couldn't have and screaming for no reason. (Who knew a Starbucks cup and straw were such a commodity) It was beyond bizarre but totally understandable given the circumstances. I'm pretty sure I throw my own tantrums when I don't get my way or when left alone for longer than 3 days....so I totally get it -- just very strange coming from Avery. All the Dr's and staff kept saying how unlike her it was.
Avery was fitted for glasses yesterday... blue ones so they match her eyes. They should be in at the end of the week so I will post a picture when she has them. The eye Dr is hoping this will help her lazy eye that she has as a result of the surgery. In 2 months they will look for improvement and see if we need to change the plan. Her ankle braces also came in this week! We were really excited to get them as we ordered them in pink camo -- daddy's favorite. However they turned out to be more of a tie dye than camo, Oh well, still cute. These should help her ankles have more support as she learns to stand and walk -- nothing permanent, just helpful. Her counts are still up, but she is definitely feeling worse this round than ever before. We have her on all 3 anti-nausea medications, getting them as often as possible and we still have been tossing our cookies. Hopefully that will end soon and we can move on with low counts and getting those back up. Next week we will be busy busy busy as she prepares for FL and finishes the chemo round. We have an Auditory Brainstem procedure (sedated hearing test) on Monday and MRI/Lumbar Puncture on Thursday. We also will have a PET scan, Feducials implanted and radiation simulation the following week -- and before we know it we'll be headed to FL.
Tomorrow I meet with the coordinating nurse for the Radiation plan. I am hoping to have a much better idea of the plan moving forward....well actually I really just want them to follow the plan I already have in my head because that's what I am going off of for now. It would be much easier if they would just jump on board, however we all know they probably have their own idea of what this looks like -- we'll see who wins.
Well I am on my way to get the laundry and relieve Lori of Avery duty -- yes it's almost 11 pm and Avery is wide awake -- Puke and Rally people, I'm not kidding.
Jenn
Avery was fitted for glasses yesterday... blue ones so they match her eyes. They should be in at the end of the week so I will post a picture when she has them. The eye Dr is hoping this will help her lazy eye that she has as a result of the surgery. In 2 months they will look for improvement and see if we need to change the plan. Her ankle braces also came in this week! We were really excited to get them as we ordered them in pink camo -- daddy's favorite. However they turned out to be more of a tie dye than camo, Oh well, still cute. These should help her ankles have more support as she learns to stand and walk -- nothing permanent, just helpful. Her counts are still up, but she is definitely feeling worse this round than ever before. We have her on all 3 anti-nausea medications, getting them as often as possible and we still have been tossing our cookies. Hopefully that will end soon and we can move on with low counts and getting those back up. Next week we will be busy busy busy as she prepares for FL and finishes the chemo round. We have an Auditory Brainstem procedure (sedated hearing test) on Monday and MRI/Lumbar Puncture on Thursday. We also will have a PET scan, Feducials implanted and radiation simulation the following week -- and before we know it we'll be headed to FL.
Tomorrow I meet with the coordinating nurse for the Radiation plan. I am hoping to have a much better idea of the plan moving forward....well actually I really just want them to follow the plan I already have in my head because that's what I am going off of for now. It would be much easier if they would just jump on board, however we all know they probably have their own idea of what this looks like -- we'll see who wins.
Well I am on my way to get the laundry and relieve Lori of Avery duty -- yes it's almost 11 pm and Avery is wide awake -- Puke and Rally people, I'm not kidding.
Jenn
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