Thursday, April 28, 2011

"Hey, its okay"

You know the drill. I do a little ranting and raving and you either laugh or judge me. Its your call...I'm pretty indestructible these days. :)

So...Hey, its okay!

-to run out of Tupperware and use all of Pipers sippy cups instead

-to really wish that Chad were gone from the house during the week. Having him in and out because of classes throws off my mommying technique.

-to not think that 3$ off a $40 dress is a big enough deal to call it a sale.

-to sometimes air dry some of my bigger pots and pans in the turned off oven for lack of counter space.

-to sort of/kind of/maybe so look forward to getting up tomorrow morning at 5am at Linley's insistence to watch the Royal Wedding.

-to wonder if sleeping in is a valid enough reason to decide to home school next year.

-to actually not be frightened at the idea of a 3rd child. Of course, my uterus and Chad are sure to make a stink about this and really, the two of them never listen to me anyways.

-to hold my breathe every time my debit card is being scanned.

-to send Chad out to the grocery store when I hear there are storms and tornadoes possibly coming our way, but not for bread or flashlights. Nope, I wanted ice cream.

Tuesday, April 19, 2011

Big Time Saturday Night

You know us college kids. Marriage and little-uns haven't slowed us down. We can still get a little crazy on the town on a Saturday night. And we breed some sweet little ladies who can hang like the best of them. See the proof...

Seasoned bus riders or kids with parents who dig free university transportation?
You decide.

See the moms? See the cardigans? See that gleeful look in their eyes? They are all gussied up and not cooking dinner tonight, my friends.

Piper smiling. Hawaiian roll. Both are familiar with the other.

Fact: UGA students drink super much at 6:30pm and the North Campus is safely away from all that jazz.

Fading children need Starbucks hot cocoa. Its true.

Somehow my dancing to entertain quickly fading little girls didn't faze the majority of passerbyers. And I am no dancing queen by a long shot.

See? Its always nice to have a night on the town. And its even nicer to have obedient and sweet children and fun adults who can count their dollars and splurge on a good old fashioned married with children Saturday night on the town. Thanks for that you other wild and crazy college folks.

Tuesday, April 12, 2011


And we are almost out of here. I am thrilled. Thinking of sleeping in that soft, cozy big old bed with my lover and with both sweet girls across the hall is fabulous.

It will be a little odd to not have some strange nurse poking their head in the door with the nurse who is leaving at 6:30am just to "make sure Piper is here". Seriously? Was sneaking out at midnight an option? Or the wonderful, highly educated doctors who open the handle to the room, crumpling the note that I place right there that says " Piper is sleeping...please come back later" and walk in speaking loudly and looking around for her. And no, you may not take a listen. She is here, ask the nurse. She is well, ask me. Thankfully the therapists are great and my Piper is leaping and bounding out of here.

Two weeks ago, she struggled to sit unattended for long. Today she is going from sitting to a crawling position and back again. Two weeks ago she could not stand alone. Today her favorite thing to do is to push the baby carriage down the hall with minimal assistance. Two weeks ago she stared at toys and playthings. Today she loves to color, play play-doh and Little People toys. Two weeks ago her vocabulary and signing had reached a plateau. Today she can also sign "play" "open" and "done". Two weeks ago we felt blessed to get a little smile out of her. Today she belly laughs, smiles on command, blows kisses, shows off parts of her body and waves first thing when she notices someone laid their eyes on her.

We spent all day today in a rush. Dr. Bergsagel chose to go ahead with Pipers monthly chemo which just so happened to be a sedation/spinal chemo. So she was NPO until 11am but completed an hour and a half of different therapies before the procedure. She was also photographed for some physicians bulletin they are putting together about the therapy dogs the hospital uses. Then in the midst of the sedation she swallowed some fluids which affected her breathing and spent the next hour being watched as she was given breathing treatments. We then went to grab lunch down in the cafeteria, came back to the room, ate, fell asleep at 3 only to be awoken at 4 to go downstairs for a CT scan to ensure no fluid on the lungs. Completed that, came back to room, did two more rounds of therapy, fell asleep, got visited at the same time by all the Dr.s who check on her , woke up. She then was due for her monthly dose of IVIG which is a boost of antibodies for her little body that she has reacted to in the past and now gets benedryl, tylenol and a steroid for. She began the transfusion which ran for 4 hours, had blood taken to check her CBC and CMV levels and then was put through the apparent horrors of a bath. Smelling much improved she and I cuddled on the bed and she did her nightly routine of spreading lotion all over her legs and arms and usually, my ears or other body parts she finds funny. And she zonked out at 10 and I have big plans to squeeze a shower in before zonking myself.

All in all this visit has been superbly beneficial. I don't ever want to have to come back again but I am glad Chad and I made this decision, despite how exhausting and frustrating it is for everyone involved. I think I need these random hospital stays to be reminded of just how good I have it back home in that itty-bitty apartment.

Saturday, April 9, 2011

Fickle little me

Fickle little me.

I am happy. I am so enjoying the simplicity of life with Piper (and Linley) these days. She smiles. She laughs. She wants to get into everything. She is a joy to be around and I tell you with much love in this mothers heart that I need this. For so, so, so many months she has suffered and become a shell of a child. So many days she either screamed all day or simply sat on my hip and watched the world. So many times I felt emptied of emotion as I went about caring for this little girl who I so adored but was so utterly exhausted of.

Even so...

When sleep eludes you, life proceeds you, children exhaust you, spouses frusterate you, fears control you, I think it is normal to become overwhelmed but I have a hard time separatting overwhelmed with just plain bitter. Its too easy to cover oneself up with the warm blanket of woe.

When Piper (and Linley) are well and happy and the laundry is caught up and dinner is more than the dollar menu at McDs then I am contented. My soul smiles.

When Piper (and Linley) are not well and fears/lonliness abound and my feet trod and my mind blanks I am far from contented. I am questioning and I am not exuding any traits of faithfulness. My soul festers.

Oh fickle little me. Each day is only a day, not a lifetime. I dont want to be that person who bends when the hard winds pick up and find myself seeking a God that I usually find no time for, neither do I want to question Him with belligerent thoughts or actions, raging against injustices. I do. And I will. But I dont want to.

I want to learn to live in the moment, knowing that the biggest and best part of my existance is farther rather than nearer. That sometimes holding tight, smiling weakly, plodding through the muck and mire is simply the best way to do that...without a bitter, discontented heart every time I hear ill words or fear crosses my mind or my range of emotions control me.

I want to lean on that Rock. To trust such a magnificent God. On days when I have not the energy to care not whether I am upright and standing that I will calmly lay myself in the dust of the dreams that I once dared to have and smile, knowing that this moment shall pass. That I chose, just like I do daily with my husband, to stay and find out what God has in store for me, bitterness be damned.

If it is ugly...I want to still praise God.

If it is beautiful...I want to still know God.

Fickle little me.

Thursday, April 7, 2011


A lot has happened since my handy dandy bullet point essay. Piper is thriving and doing wonderfully with the therapies. Each day she has between 3 and 4 hours of different therapies to work on different aspects of her development and it wears her out but she is rocking it. We met on Wednesday to talk more in depth with all her therapists about goals, discharge plans, etc and I was very happy to hear them sing her praises. Her specialist also have many good things to report.

Frankly, before her stay we get a lot of "wow, she sure has some lungs" and "she sure is pretty" which in essence to me that means my kid is really loud and thankfully, pretty. Both true but not always what you want people to notice standing in line at Target. The therapists however are impressed with her small motor skills and her communication skills which is basically signing plus a few choice words and well intentioned grunting and pointing. She is doing well with her new leg braces and is often pointing to the couch where she stands and looks out the window. Her hips are still frog legging instead of putting her in a postition to crawl but she is trying and she is able to get from a sitting position to a crawling one and vice versa and is improving daily on rolling over on her own. Mostly, she finally has the desire to play and explore and move, and she has had so little of that since November that it is pure joy to see her do what she is doing. The rest will come, I am confident.

Piper has had a skin prick test and a 48 hour patch test to check for soy and milk allergies, both which came back negative. She is doing well drinking her elecare and on Monday they chose to stop her TPN because she was getting enough calories from that...for some reason she lost half a pound yesterday so they will continue to watch her weight and if it happens often she will be back on TPN. Her "gut rest" is being modified as she attempts different food and tolerates them well. Piper is now allowed to eat fruits, veggies, chicken and potatos. And she is loving that! Her bowel movements while still loose, are still free from mucous and blood and are only 2 or 3 a day versus up to twenty. I even got wild and have begun putting her in one diaper at a time instead of the two that we have become accumstomed to. Nice.

When we were moved from the Aflac floor to the Rehab floor, Pipers CMV levels had dropped to 1800 and the infectious disease guys were content with that and chose to stop the antibiotic. Unfortunatley the blood work from Tuesday came back today and they have risen again to 10,000. She had her urine tested to ensure them she was not growing a resistence to the Cytovene and while they wait they went ahead and restarted it up again, once daily. The next step up as far as antivirals to treat the CMV has the potential to be signifigantly more harmful to her organs. Not so nice.

We will be going home on Wednesday the 13th.

If you are the praying sort please pray for this CMV. It is such a monster and I am so overwhelmed at how it is affecting so many things. Piper still is in treatment to battle the even bigger monster that is leukemia but unfortunatly the two monsters are not very compatible and are not helping the other out in the least bit.

Monday, April 4, 2011

"I want to be a supermodel veterinarian"

...well, Linley does. She tells me this frequently and emphatically because I ask her frequently what her plans are for her life because I am not sure whether to encourage her supermodel aspirations or to attempt to tone them down a bit. Not because she isn't an incredibly beautiful little girl but because she already has a little of a diva temperament at times and well, she's short like her mom. And her dad. She gets it honestly but it probably will not parlay her into a future on the runway.

So we are chatting about other career options and apparently she now wants to be a vet. Now anyone who knows me, knows that I am simply not a pet person. Contrary to popular belief I do not go around kicking them when their owners are looking away but neither do I ever desire to run a zoo. Linley, on the other hands is now planning to supermodel at night and vet during the day. And I think I am okay with that. So okay with that that last week I spent the afternoon with her at the University of Georgia's Veterinarian School Annual Open House. (try to say that three times fast)

It was a lot of fun even if the goats smelled accordingly and the bull was keeping a very keen eye on me. I kept my distance but Linley was loving all the animals and exhibits and free things for the kids to do. I was simply loving being with her, supermodel or vet or not.