I dont know what to write. I am on the way out the door for a funeral tomorrow in WVa for my friend Kellys husband. My heart is broken for her. My heart is tired for Piper. Total of 15oz and then a royal bedtime puke...can she possibly be getting any nutrients?
I just dont know. I do know that I love my girls. And Kelly loves her husband and I dont ever want to take these precious moments for granted. Pure air to breathe is a miracle. Life is a blessing...hug your babies and tell your spouse you love them.
Thursday, November 11, 2010
Wednesday, November 10, 2010
Not going to happen
What a joke. 24 oz of formula in this little girl? Its not going to happen. I struggled to get 14 in her ALL DAY only to have her throw up at 6pm? I'm not sure if I am up for this. I did notice the bathtub is a hot mess when I put Piper in to hose her off after her own formula shower so that's on the list to do before bed.
I keep thinking "if I just had a way to get it in her tummy without a syringe we would be OK"...uh, that's an NG tube Susanna. Oh well, we get the megace tomorrow and I am hoping that will help hugely. As of today I am less "tentatively hopeful" and more tentatively breaking down. (After cleaning the bathroom of course.) So if you are the praying sort, and Lord almighty why would anyone not be, start that praying. This is a doozy of an experience.
I keep thinking "if I just had a way to get it in her tummy without a syringe we would be OK"...uh, that's an NG tube Susanna. Oh well, we get the megace tomorrow and I am hoping that will help hugely. As of today I am less "tentatively hopeful" and more tentatively breaking down. (After cleaning the bathroom of course.) So if you are the praying sort, and Lord almighty why would anyone not be, start that praying. This is a doozy of an experience.
Tuesday, November 9, 2010
Tentatively Hopeful.
I am so very tired and my house is a wreck so this is going to be a very simple, not so witty update. No NG tube at this time. We now have a prescription for Megace, which is a man made version of hormones in the thyroid that stimulate hunger and subsequently weight gain. Dr. Lewis seemed pretty certain that we will see an increase in her appetite and has pulled Piper from whole milk in favor of a much more condensed pediasure style milk. This stuff is heavy duty as it is 375 calories per 8oz versus the 160 calories per 8oz in whole milk. We are also to continue adding Duocal to whatever she will place in that sweet little mouth of hers. (an additional 30 calories per 4 oz) The goal is her consuming and keeping in 900-1000 calories per day. So truly she could drink 3 of these cans and nibble here and there and be above the parameters of caloric intake.
Unfortunately for us, Piper simply has little to no appetite so its not only a matter of getting fatty foods in her little body but also just plain getting ANYTHING in her little body. It took me over an hour tonight to get 4 oz of this formula into her and the majority of it was done with a 5ml syringe. This could be a very long battle but hopefully as her appetite responds to the Megace she will drink the stuff voluntarily. Everyone we talk to tells us that Piper will eat on her own but frankly, she wont. It has been 4 months and she is down to 13lbs and some change. If I have to syringe this stuff into her, I will. I cannot help but think that anything will be better than an NG tube. Or at least anything is worth trying before submitting to an NG tube. Piper goes back to the clinic in two weeks and will be weighed then so we will see how this new plan pans out.
I am hopeful. An NG tube is not the end of the world but I feel very strongly, and thankfully the GI Dr does also, that there are other options to try before that step. We will see. As of tonight I am literally pushing 4 oz of this stuff into Piper every 4 hours and hoping that she tolerates it well.
I am pretty thankful for the simplicity of this little 730 sq ft apartment tonight as I attempt to get it in order before crashing...the cleaning can wait until tomorrow. Heaven only knows that I will be hanging close to the house with a syringe in my hand...no reason why I cannot clean a toilet in between feeding ounces. :)
"you will keep in perfect peace those whose minds are steadfast, because they trust in you" I was spending some time this morning chatting with God and this verse came to mind. It is what I desire. I have chosen once again to turn my eyes to the Lord. I trust Him. He has brought us so far and He has blessed us. This is why I am chosing to have that faith because this girl needs the peace that inevitably comes along with it.
Unfortunately for us, Piper simply has little to no appetite so its not only a matter of getting fatty foods in her little body but also just plain getting ANYTHING in her little body. It took me over an hour tonight to get 4 oz of this formula into her and the majority of it was done with a 5ml syringe. This could be a very long battle but hopefully as her appetite responds to the Megace she will drink the stuff voluntarily. Everyone we talk to tells us that Piper will eat on her own but frankly, she wont. It has been 4 months and she is down to 13lbs and some change. If I have to syringe this stuff into her, I will. I cannot help but think that anything will be better than an NG tube. Or at least anything is worth trying before submitting to an NG tube. Piper goes back to the clinic in two weeks and will be weighed then so we will see how this new plan pans out.
I am hopeful. An NG tube is not the end of the world but I feel very strongly, and thankfully the GI Dr does also, that there are other options to try before that step. We will see. As of tonight I am literally pushing 4 oz of this stuff into Piper every 4 hours and hoping that she tolerates it well.
I am pretty thankful for the simplicity of this little 730 sq ft apartment tonight as I attempt to get it in order before crashing...the cleaning can wait until tomorrow. Heaven only knows that I will be hanging close to the house with a syringe in my hand...no reason why I cannot clean a toilet in between feeding ounces. :)
"you will keep in perfect peace those whose minds are steadfast, because they trust in you" I was spending some time this morning chatting with God and this verse came to mind. It is what I desire. I have chosen once again to turn my eyes to the Lord. I trust Him. He has brought us so far and He has blessed us. This is why I am chosing to have that faith because this girl needs the peace that inevitably comes along with it.
Monday, November 8, 2010
Clinic Visit 11/8
For some reason I was thinking the ultrasound was given to check out her ability to consume food but apparently it was done to chck out her kidneys and bladder in light of her UTI last month. It went well enough. She hates to be held down, but the tech was a great combination of firm and patient. And the results are normal. Her kidneys are small for her age but normal for her size with no masses or damage to be found. Her bladder was perfect as well.
After that we went out for lunch then back to the hospital for her weight check at the clinic. And that wasn't so grand. Piper has only gained .3 oz in two weeks. Not so great. Nurse Amy was able to get us in to see the GI doctor tomorrow at 1:00 so we are back in Atlanta once again. She has all but decided that an NG tube is the next step. I am overwhelmed at the thought of beginning new treatments when life was supposed to be becoming a little more simple. Mostly I am at a loss. I cannot make her eat and I cannot make her gain weight. I have a list of skeptical questions for the Dr tomorrow and a fragile hope that this may be the answer to the Case of the Incredible Shrinking Girl.
After that we went out for lunch then back to the hospital for her weight check at the clinic. And that wasn't so grand. Piper has only gained .3 oz in two weeks. Not so great. Nurse Amy was able to get us in to see the GI doctor tomorrow at 1:00 so we are back in Atlanta once again. She has all but decided that an NG tube is the next step. I am overwhelmed at the thought of beginning new treatments when life was supposed to be becoming a little more simple. Mostly I am at a loss. I cannot make her eat and I cannot make her gain weight. I have a list of skeptical questions for the Dr tomorrow and a fragile hope that this may be the answer to the Case of the Incredible Shrinking Girl.
Sunday, November 7, 2010
Clinic visit tomorrow
Because of Pipers amazing ability to lose 3 lbs in 3 months, the oncologist are becoming concerned. Now. Not at each clinic visit we go to every single week for the last 14 months. Just now. Believe me when I say these doctors are the best out there...at curing Cancer. The rest of the whole growing and thriving bit seems to be off the radar until it becomes a big 'ole problem. You know, like losing 3 lbs in 3 months. And so...
Tomorrow Piper and I and my sister are visiting Scottish Rite to have an ultrasound done and then a follow up weight check across the street in clinic. ALL of Piper's chemo medications have side effects. Many of them are partially protected by pre-medicating, but because she has had such an intense and long treatment so far, the possibility of there being damage is high. Thankfully she is no longer throwing up or having diarrhea so that is a blessing. A blessing to her, to me, to the laundromat downstairs, to her poor bedsheets and to the little pink doggy she carries around which inevitably got the worst of each episode.
So pray for us tomorrow if you think of it. She is still not scheduled for a chemo visit for another 2 weeks so this should be a simple visit and the ultrasound should be routine. Hopefully if there is a reason beyond what we are already suspecting then it can be easily remedied. And prayerfully, every clinic visit from here on out will continue to show her body producing healthy cells. Everything else we can deal with.
Tomorrow Piper and I and my sister are visiting Scottish Rite to have an ultrasound done and then a follow up weight check across the street in clinic. ALL of Piper's chemo medications have side effects. Many of them are partially protected by pre-medicating, but because she has had such an intense and long treatment so far, the possibility of there being damage is high. Thankfully she is no longer throwing up or having diarrhea so that is a blessing. A blessing to her, to me, to the laundromat downstairs, to her poor bedsheets and to the little pink doggy she carries around which inevitably got the worst of each episode.
So pray for us tomorrow if you think of it. She is still not scheduled for a chemo visit for another 2 weeks so this should be a simple visit and the ultrasound should be routine. Hopefully if there is a reason beyond what we are already suspecting then it can be easily remedied. And prayerfully, every clinic visit from here on out will continue to show her body producing healthy cells. Everything else we can deal with.
Friday, November 5, 2010
"Hey, it's okay"
to be one of the first to come to mind when a friend needs to borrow some white wine for a recipe.
to not vote...not because I didnt want to but because I still cannot find my voter registration card.
to plan to drop the politeness next time the upstairs neighbor asks me frantically and rudely where Piper is...I am going to calmly tell her that Piper is inside playing with knives.
to make eggs for dinner. A lot.
to be okay with my bank being bought out but not okay with singing "oh, oh, oh a Wells Fargo wagon is a-coming down the street, oh please let it be for me..." from The Music Man every time I want to take out $20.
to find Rocky Road ice cream a lacking substitute for the Heavenly Hash ice cream I loved as a child.
to answer "No" when the librarian asks you if you want a "intriguing and exciting historical novel"...I want mindless. A mindless, stupid, chick lit with alot of laughing.
to not vote...not because I didnt want to but because I still cannot find my voter registration card.
to plan to drop the politeness next time the upstairs neighbor asks me frantically and rudely where Piper is...I am going to calmly tell her that Piper is inside playing with knives.
to make eggs for dinner. A lot.
to be okay with my bank being bought out but not okay with singing "oh, oh, oh a Wells Fargo wagon is a-coming down the street, oh please let it be for me..." from The Music Man every time I want to take out $20.
to find Rocky Road ice cream a lacking substitute for the Heavenly Hash ice cream I loved as a child.
to answer "No" when the librarian asks you if you want a "intriguing and exciting historical novel"...I want mindless. A mindless, stupid, chick lit with alot of laughing.
Monday, November 1, 2010
Halloween 2010
Growing up we never did Halloween. My parents went out of their way to give us a good time at the church parties, or at Pizza Hut or even once I remember renting a video and hiding out in the dark basement ignoring those pesky trick or treaters. It was a little embarrassing but no biggie. My brother though, got in trouble a few years for telling the other neighborhood kids that it was "Satan's birthday"...which made sense to us if Christmas was Jesus' birthday. As a parent now, I am certain that none of those neighborhood mothers were too excited to see the Martin kids and their opinions coming.
All that to say Chad and I DO trick or treat with the girls. While I by no means am an advocate of Satan, demons, horror or any other similar parts of Halloween, I am a huge advocate of dressing up, eating candy, taking a walk with my family and creating smiles on my girls faces. It works for us.
And here are those sweet smiling girls (OK, just Linley. Piper doesn't smile and definitely doesn't smile after a 5 day pulse of steroids.) And that is my hottie hubby with his "good" teeth and Piper staring at them. And that may be me glowing from all the silvery hair glitter that I sprayed in a very fancy angel named Linley's hair. And a good time was had by all.
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