Sunday, December 25, 2011

Joy!

"How beautiful upon the mountains are the feet of him who brings good news, who proclaims peace, who brings glad tidings of good things, who proclaims salvation, who says to Zion, 'Your God reigns!' "  Isaiah 52:7

Wednesday, October 26, 2011

I May Have a Problem...

(Obviously, I have a problem with regularly updating this blog, but that's not the problem to which I am referring.)

Have you ever had an issue in your life that you acknowledge is, well, a little dysfunctional?  But rather than addressing it, you just keep adding on to the existing problem because it's easier than fixing it?

My problem is this--I hoarde crafting supplies.  (Cue sulky letdown.  No juicy gossip here.)  By nature, I consider myself to be a pretty organized person.  But there are three Drawers in my bedroom that betray my orderly facade.  I have a small plastic storage bin with three sliding Drawers where I keep all things crafty.  When I need a craft supply, I go to the store and buy it.  When I'm done, I shove it in one of The Drawers.  I never look in The Drawers first; it's far too dangerous.

Instead of carving pumpkins for Halloween, I decided to buy pie pumpkins and paint them instead. Today, I decided to paint one for Sadie and myself. Sadie was napping so I couldn't go to the store to buy paint or brushes. So, I plucked up the courage to face my old nemesis--The Drawers. I thought I'd just get out a few bottles of paint and a couple of brushes, hoping I'd have enough colors to satisfy everyone's vision for their pumpkins. This is what I found:






22 bottles of paint, 2 paint pens, and 33 brushes!  I also filled a gift bag with craft supplies to donate to our church's preschool, about 400 sheets of construction and scrapbook paper, 20 or so thank you cards, 2 yards of fabric I bought in 2004, and more.  See why I never go in there?  Anyway, here's the final result:


"Super Sadie" pumpkin, a pumpkin painted to look like candy corn (mine), Sponge Bob (Elena's), and Chris' sad pig, a tribute to the CAFO.

Here's what we've been up to recently.

Enjoying fall weather


Sadie has, as usual, been seen by multiple specialists. She's actually been cleared by her surgeon and we'll just follow up with him on an as-needed basis. Her developmental pediatrician ordered a feeding study which, in my opinion, was kind of a bust. We're trying to work on things on our own with a little guidance from OT. We've been advancing textures of foods, and she's starting to drink some new things as well. Her last labs were fantastic and the nephrologist discontinued her Bicitra which kept her blood from being too acidic. The urologist will be taking a look at her bladder on Dec. 2nd, marking her seventh trip under anesthesia in less than 2 years. She's speaking in complete sentences, feeding herself, developing an attitude, and most everything else that any other almost-two-year-old does. The biggest development is probably that she recently got "Sure Step" SMO braces.



The SMO's aren"t even noticable under pants.

Sadie's SMO's are small enough to fit in my hand.  They're printed with Super Why, her favorite character.

Elena is truly becoming a young lady.  Her braces are off, she got glasses, she's almost as tall as her mother, and she cut her long hair and donated it to Locks of Love.  She was just initiated into Beta Club, and tomorrow she leaves with her eighth grade class for a trip to Washington, D.C. where she and three others were chosen to lay a wreath at the Tomb of the Unknown Soldier.  We are so, so proud of her!

Before Beta Club initiation

Chris continues to work away, driving over 100 miles every day for work.  He's becoming quite the expert on NPR programming during those long commutes...  Last month he grew a beard.  (Sharp gasp from all who know him personally.)  He raised money for prostate cancer research through a project called Septembeard.  I know how wonderful and needed this cause is, particularly since it was the first form of cancer my father had.  Still, I couldn't help but be reminded of the line by Green Day:  "wake me up when September ends."  I was a fan of the cause.  Not a fan of the beard, though.

What is that?  Is it a milk mustache?  No...

...it's Septembeard!

As for me, my responsibilities at work have changed.  I'm now the local agency breastfeeding coordinator for six counties in Indiana.  I'm still toying with the idea of starting a second blog about one of my other passions--elimination of industrial agriculture--and I'd like to chronicle my journey as I take on micro-farming next year.  And, I need to come up with a good use for some craft paint...

Friday, August 5, 2011

Another Month Gone By...

...and what a busy month it's been!

Since surgery, Sadie has started walking like crazy!  Before, she was taking 8-10 steps before crashing.  Now, she's walking all over the place, climbing stairs, and trying desparately to run.  Her appetite, though never bad to begin with, has definitely improved, and she's also taking bigger fluid volumes which has always been a concern for us.

We've also had three appointments at Riley.  We had a routine follow-up with Dr. R, her urologist.  Sadie has routine ultrasounds of her kidneys and bladder before each appointment.  Her ultrasound showed mild hydronephrosis (fluid on the kidneys) which is unchanged in the last six months.  It's a good sign that the fluid hasn't increased, but it's not great to have the fluid there to begin with.  So, in January she'll have a cystoscopy.  She'll be put under general anesthesia and Dr. R will take pictures of her bladder from the inside.  He wants to make sure she's still emptying her bladder completely--if not, this can cause urine to reflux back into her kidneys and lead to hydronephrosis.  He'll also make sure that structurally things still look okay.  All tests up to this point have been normal, and we're praying that this will be no different.  Obviously, this is not of critical concern since Dr. R didn't feel it needed to be evaluated for six months, and he continues to say that he's, "very pleased."  Many, many girls born with persistent cloaca are not able to void their bladders normally, and they often have a vesicostomy or mitrofanoff.  We are fortunately not at that point right now.

The same week, we had surgery follow-up with Dr. S.  He feels that Sadie is recovering nicely, and she won't need to go back for 3 months for follow-up!

One of my favorite appointments is with Developmental Pediatrics, and Sadie was also seen by Dr. K who is new to us.  Her old developmental doc moved away in January.  We really loved Dr. K, and she spent lots of time with us.  She was very impressed with Sadie's speech skills!  She is interested in determining the cause of Sadie's low muscle tone and whether it's just an issue of prematurity or if there's another cause.  She's planning on reviewing all of Sadie's records to see what tests have and haven't been done, and then she'll determine whether further evaluation needs to be done.  She's also arranging a feeding study in September, since we're still struggling with advancing textures and getting Sadie to take enough fluid from a cup vs. a bottle.  (We haven't weaned Sadie because she can't take enough fluid volume from a cup--she can only tolerate a few sips.  We stared a sippy at 6 months and have done everything we can to get the bottle away from her, but she just can't hack it.)  She may have some residual problems from tracheomalacia which was caused by prematurity and led to the need for her to be tube-fed for many weeks.

Last Friday Sadie spiked a temperature of 101.5.  My first fear was that she had developed a urinary tract infection.  Dr. R's nurse told me just to keep an eye on her.  The next day her fever broke and she developed a head-to-toe rash.  She had roseola--thank goodness that's over!

Summer is winding down, and Elena has only one week of summer vacation left.  Her depression is only minimized by the prospect of getting a new wardrobe of clothes!  With 4H, church camp, and all her other summer activities behind her, we're now gearing up for the eighth grade trip to Washington, D.C. in October. 

We are so thankful that everyone in our house is happy and healthy right now, and we're looking forward to a wonderful fall!

Sunday, July 3, 2011

Back Home Again

Yep, we made it home Friday evening!  Friday morning Sadie was allowed to start liquids.  Once she tolerated liquids the IV fluids were discontinued.  She was also allowed to come off monitors since she hadn't needed supplemental pain meds for over 24 hours.  We then got to take her for a wagon ride through the hospital and she proceeded to charm everyone we passed.  She flashed her grin, waved her little hand, and said, "Hi.  Wagon!" to everyone we passed.  Once back to the room she was allowed to eat lunch.  Then she pooped (a requirement before discharge), napped, and woke up just in time to have her IV's removed and receive discharge paperwork.
Once home we scrubbed off the hospital smell and slipped into jammies.  Sadie is doing great and seems to have minimal pain.  She's not quite back up to her full physical activity, but then again she couldn't walk for almost four days.

Finally, I've been promising pictures of the Simon Tower rooms at Riley since our last admission in February.  So, here they are:


The view from our room.  The tall building to the left in the distance is the new JW Marriott.  Beside that is Lucas Oil Stadium, home of the Indianapolis Colts.  We could also see the roofline of the original Riley Hospital as well as the helipad which are not seen in this view.

Sorry for the bad lighting...this is the family area in the room.  There's a couch that pulls out to a bed, two desks, a recliner that also becomes a bed, a desk chair, and a separate tv.  The bathroom is behind the door on the right--so nice to have a private shower!

Snuggling with grandma.  This is the patient side of the room, and the two sides can be divided by a curtain.  Across from the crib is a large flat-screen tv, Wii, and fridge!  Also, each unit is decorated like a different ecosystem.  We were on 9 East, which is the forest ecosystem.  Our room was decorated with red pandas.

Thursday, June 30, 2011

Spent

Mommy and Daddy are tired.

We've spent the entire day trying to distract Sadie from the realization that she cannot eat or drink.  She also can't leave the room because she is on monitors.  Chris and I eat in shifts so she can't see us.  The last 72 hours have been filled with reading lots of books repeatedly, throwing and picking up toys, watching PBS, intermittent napping, and explaining why she can't have a drink when she asks.  Her IV is infusing in her foot, so she is also bummed that she can't walk.  We're hoping and praying that the surgeon, Dr. S., will be in tonight and start her on clear liquids.

The view from our room is spectacular (I'll post pictures later) and we're right above the helipad, which I initially thought would be cool.  The tower is pretty well soundproofed so they don't make a lot of noise with their coming and going.  There is one thing I did not take into account, however--the strobe lights that flash all night long.  We can mostly block them with the blinds, but not completely.

We did get a break today when Chris' mom and grandma came to visit.  We got to sneak out of the room for a few minutes and get some lunch from the fantastic deli.  I think it gave us just enough of a charge to make it to bedtime.

Please pray that Sadie will start a diet tonight, advance tomorrow, and go home.  My dad is having surgery on Saturday and I'm really hoping to be home in time.  We appreciate the prayers, e-mails, calls, and texts you have all sent us!

Wednesday, June 29, 2011

It never gets any easier...

...handing your child to a complete stranger with only their word that they will, "take good care of her."

After four surgeries, we may be pros in the physical sense.  Emotionally, not so much.  Sleep deprivation is definitely a factor in our emotional state (Sadie pooped and puked all night).  But it's also very, very hard to look at your baby the night before surgery with the realization that you are putting her through surgery again.  While I take great pride in the fact that Sadie is exceptionally cooperative with having her belly prodded, lung sounds examined, and blood pressure taken, it's very disheartening to realize that this is normal for her.

Surgery went...okay.  I am, by nature, the kind of person that wants only rainbows and butterflies.  Marginal or bad news devastates me.  So while the report wasn't bad, it wasn't glowing optimism, either.  We came in for a simple prolapse repair with the realization that some scar tissue may need to be removed.  Instead, Sadie had a partial redo of her repair from August.  I'll try to maintain her dignity here, but things had to be relocated a little bit.  And she did require removal of some scar tissue from around the area where her colostomy was taken down.  Our surgeon assures us that this will make things better, but she'll have to go another day without eating or drinking and our stay will be longer than anticipated.  My mind only tells me that things could get much, much worse from here.  We may not have had an ideal routine before, but we had a comfortable routine.  Now we have to start over.

After our families went home, I couldn't stop crying.  I tried, I really did.  I kept trying to keep things in perspective.  Sadie doesn't have some incurable, inoperable disorder like so many other families we're here with.  Sadie has the hope of living a normal, happy life.  But the tears still came.

One of the countless wonderful things about Riley Hospital for Children is that there are 2 Ronald McDonald Houses.  One is in the building and one is across the street.  So, we can go any time and get a free meal in a comfortable, relaxed, and home-like setting without leaving the hospital.  Many families who have been Riley patients will come back and serve dinners at Ronald McDonald House.  Tonight, a group served a spaghetti dinner.  They had a pad of paper laying on the countertop and asked people to write down their prayer requests.  As I read over the list before adding my own request, the tears came again.  Pray for my daughter who has a brain tumor.  Pray for my son--they don't know what's wrong with him.  Pray for our family.  I ate my spaghetti while trying not to make eye contact.  But before I left, I asked one of the servers who among them had been at Riley as a patient.  None of them had--they just serve a meal every fifth Wednesday.  I said, "you don't know how much this means to us.  This is our safe place.  Thank you."  I turned to walk away and one of the women literally chased me down so she could pray with me.  Wow.  I may not have confidence in my heart that things will be fine, but I am confident that Sadie is being prayed for--by those close to us, by our church family, and by complete strangers.

Tuesday, June 28, 2011

Headed to Indy

Sadie is being admitted today for her prolapse repair.  Today is bowel prep day (yay) and surgery is tomorrow.  She should be released the following day.  I'll post more updates later.

Monday, June 27, 2011

Wierdest Date Ever

Saturday, Chris and I spent the day together without the girls.  Wanna know what we did?

We went to a CAFO conference.

Yup.  A confined (or concentrated) animal feeding operation conference.  Why?  We have 5,100 sows living 1/2 mile from our front porch.  We spent the day hearing about the adverse social, economic, and health affects of these massive factory farms.  This is an issue we have been deeply concerned about ever since our "neighbors" moved in (we were here first).  It was nice to find some like-minded people locally, and overall it was a great day.  Plus, we got to feast on a nice selection of non-CAFO, all organic meats, fruits, veggies, and cheese.  I'm actually considering starting a second blog devoted to the topic of industrial agriculture.  Maybe someday...

Tuesday, June 21, 2011

Pics and a Video

Enjoy!




Daddy is a huge Yankees fan.  Let the brainwashing begin...


Visiting the Fort Wayne Zoo.

"Daddy, is this really necessary?"

Sadie has started using Play Doh as part of her occupational therapy.  Watch the video and you can see how much she loves it!


video

Tuesday, June 14, 2011

It's a good thing my bag is always packed...

...because I never know when one of Sadie's docs will spring something surprising on us!

We had a follow up with the surgeon today.  Sadie has had a prolapse since her repair last October, but due to some recent minor symptoms Dr. S feels it's time to repair it.  He said we may be scheduled before the end of the month.  Good thing we've been through this before.  I have our insurance caseworker on speed-dial and we're already precertified.  We're just waiting for a date.  Sadie will have a 3-day hospital stay if all goes well.

I'll update when I know more.

Saturday, June 11, 2011

Prayers Needed

Please visit the Hilliard Family blog and send your birthday wishes to Eithene.  Please be lifting the family up in prayer during the difficult days and weeks to come.

Tuesday, May 24, 2011

What It Means To Be Great

I've been absent from blogging for some time now.

The truth is, I've been struggling lately. A lot.

Struggling to accept that my baby girl will never be like other little girls. Struggling to make sure she gets the care she needs to be as healthy as possible.

Struggling to make sure that my teenager doesn't feel left out in this family.

Struggling to accept that my father has cancer. Again. And struggling to make sure he gets the care he needs.

Struggling to meet the financial burdens of having two mortgages, medical bills, and having a husband who drives 100 miles per day when gas is $4/gallon.

Struggling with very mean and nasty neighbors, and trying to handle them in a Godly way when my human nature wants revenge.

Struggling with myself for not doing more with my life. I have been feeling very inadequate, partly because I caught up with an old friend from high school. Someone who has done great things with his life. He's a PhD, has done extensive research in his field, has appeared on television, and on and on. Comparing that to myself, I seem pretty insignificant. He moved thousands of miles away. I'm 3 miles from my childhood home. He has lots of degrees and titles. I have 130 credit hours and only an associate's degree to show for it. He's a leader in his area of study, while I've only contemplated writing research articles (you know, maybe some day when I'm important enough). He seems to have it all. My "accomplishments" seem to pale in comparison.

The funny thing is, until I found out about my friend's greatness I was feeling pretty good about myself. My dream is to stay home for my kids, have a huge garden, maybe make some jewelry or learn to sew. That seemed like the good life to me. Now I feel as though I've contributed nothing to the world. I've done nothing of greatness, of importance.

What is greatness? Is it found in those who live and work in their community, trudging along in the trenches? Is it found in those living the high life, making television appearances and writing books?

In the midst of examining this question, I pulled out a track from a song I've sung in church. It's called, "When the Saints" and was written and performed by Sara Groves a couple of years ago. You can listen and view the lyrics here.
For me, this answers the question of greatness. It can only be seen through heaven's eyes, not through mine. What is greatness? It is living your God-given purpose. Like Moses, the man with a stutter who freed the slaves from Egypt. Like Paul and Silas, who sang while they were in prison. And all the missionaries who have been martyred. And the sisters who live entirely to serve Christ through caring for, "the least of these." And the man of sorrows whose problems are so, so much greater than my own.

On that note, I have to go. To Sadie, greatness is having a sippy cup and some animal crackers, and watching "Dinosaur Train" with her Mommy. So, I'm off to be great for her. What will you do to be great today?

Thursday, March 24, 2011

My Crazy Mommy Life

I have so many updates to post (has it really been a month?) but today I saw a really interesting idea on Liv Lane's blog.  It's a blog hop, so we'll see how it goes--never even heard of one, much less done one!  The topic I'm supposed to discuss is my memories of early mommyhood.  So, here goes...

Elena, my teenager, was about as textbook as they come as far as pregnancy, delivery, and early development.  I went into labor on my due date.  I delivered after forty minutes of pushing without complication.  She hit developmental milestones exactly when my mommy books said she would.  She was a dream to bottle-wean, she would eat anything, and aside from being rather willful (wonder where she gets it from?) I have enjoyed every stage of her life.  I was still in nursing school when she was born, so it was a crazy time for me.  I got a lot of help from my parents while I finished school and found my first nursing job.  Those early days, months, and years were kind of a blur.  But I do remember thinking, how is anyone able to do this? 

Elena was almost twelve when Sadie made her dramatic entrance to the world.  Her birth was a great joy and at the same time exposed some of the deepest and most painful emotions a mother can experience.  For that reason Sadie's birth, unlike with Elena's birth, is seared into my memory.  (I guess we too soon forget the good when faced with the bad.)  After all, when an expectant mother dreams about the child she carries, her dreams don't include a devastating birth defect, multiple surgeries, and three weeks in the NICU.  The long days by the incubator were only broken up by pumping every three hours and the twice daily rounds by the residents.  In those days I felt so badly for Elena, at home with her grandparents while 3/4 of the family was stuck miles away, longing for home.

Today, the medical drama has mostly wound down.  Life is crazy having two girls that are twelve years apart!  Seriously--buying makeup for one kid and diapers for another--it's insane!  We have to coordinate Elena's dances with Sadie's bedtime.  All of Chris' and my clothes come out of the dryer with glitter on them, and our house smells of fruity hairspray and baby lotion at the same time.  But I wouldn't trade it for the world. 

Both of my girls have taught me so much, despite the craziness.  Having a sick baby definitely made me realize how much I took for granted when I had a healthy baby.  And even though the days surrounding Sadie's birth were some of the darkest of our lives, I would not change one moment.

Monday, February 21, 2011

Updates from Home

We've been home for over two weeks now, and I've been horrible at keeping everyone updated. 

I'm going to save pictures for a future post when I have more energy, but rest assured things are going fine.  Figuring out our "new normal" will be a process.  We will spend a number of months finding what diet works best for Sadie, what activities she can and cannot tolerate, what she will and will not be capable of.  Walking out the front doors of Riley was very bittersweet.  It was like bringing Sadie home for the first time.  She is a new, whole person.  There's no "next surgery" to plan for.  There's just--life.

Elena won her grade level and school-wide spelling bees last week.  The county spelling bee is in three days and the regional is this weekend.  It will be her 3rd time spelling at the regional bee!

Please be praying for a couple of people.  First, a family member is going through a serious health crisis.  I'm not sure that person wants me naming their name, but please be in prayer as God knows the need.  Second, please pray for Genevieve as she is having her PSARVUP at Cincinnati this week.  The family did not receive the most encouraging news about her prognosis.  Keep her family in your prayers as they sit in the waiting room for those many hours, just as we did 4 months ago.

Sunday, February 6, 2011

Homeward Bound

The residents were in at 6 am for rounds, and it looks like we'll be going home today.  Sadie rested well last night (compared to the last 6 nights) and I think we are all feeling much better.  She's drinking well, and we'll try cereal here in a little while.  More updates when we're home...

Saturday, February 5, 2011

Lots of Snow, But a No-Go

My previous weather-indicates-discharge-status-theory from yesterday has been blown out of the water.  Sadie had a rough night last night, not for any medically concerning reasons, but the lack of sleep caused her to wake up more like a wet noodle than a toddler.  She's not drinking a lot, so the surgeon cut her IV fluids in half to challenge her hydration and hopefully make her more interested in drinking.  She is allowed to start baby food today as well.  He doesn't feel, however, that Sadie is ready to go home today.  And we're okay with that.  We want her to be 100% ready.  So for today, we're just enjoying the view of the Indianapolis skyline being coated with a fluffy blanket of snow, and we're content in knowing that we don't have to drive home in the midst of it.

Friday, February 4, 2011

You go, girl!

Postop day 2 was starting to shape up to be a rerun of postop day 1, until a couple of hours ago when, lo and behold, the long awaited poop arrived!!  Sadie is allowed clear liquids and milk for today, and hopefully we'll be able to advance her diet tomorrow.  And (dare I say it?) maybe we can go home!  Actually, I'm sure we'll be going home because more snow is predicted for tomorrow's forecast.  Bad weather has always been an indicator for Sadie.  It took us 3 hours to get home after she was born because it was snowing horribly.  And, we had to come to Indy 2 days early for this trip because of an ice storm.

For some reason I can't get pictures to upload onto the laptop right now, so I'll put up pictures after we get home.  In the meantime, I'll be typing updates as things happen.

Thanks for all the prayers, support, love, etc. you have given us over the last 14 months.  We would have never made it without everyone's support.

Thursday, February 3, 2011

Postop Day 1

In a word, exhausting.  So glad this day is behind us!  There isn't much new to report.  We've been waiting for Sadie to poop so she could start eating, but no poop today.  The surgeon stopped by this afternoon and said she could have liquids tomorrow, which is an immense relief.  Nephrology also wanted to just check some labs tomorrow.  We're hoping that Sadie is not acidotic and doesn't have to resume meds to treat it.  Otherwise, we've just been trying to keep Sadie happily entertained, which has proven to be a big job.  We are trying to avoid narcotics because they'll slow her bowel down even more.  Tylenol suppositories and IV Toradol have managed to keep her pain fairly well controlled but haven't allowed her to get much rest.  She's not used to being held while she sleeps.  However, as soon as she's out of our arms and her back hits the mattress she's wide awake and crying.  Chris and I are exhausted from sleep deprivation, constant snuggling, hospital food, picking up thrown toys, and singing the same songs 100 times today.  But we are hopeful that this is the worst, and it is now over.

Wednesday, February 2, 2011

Surgery 3, Update 2

Sadie was out of recovery and into her room by 12 noon.  We are so happy that we got a room in the beautiful new Simon Tower, which just opened last week.  We have a private room with a fridge, enough room for Mom and Dad to stay, a shower, a Wii...we are so spoiled!  We were also very happy to learn that one of our favorite nurses from the old infant unit was going to be her nurse again.  We don't think it will be necessary to pursue getting a room at Ronald McDonald House this time.  It is such a relief to be in such a relaxing environment surrounded by nurses we know and trust.  More to come...

Surgery 3, Update 1

We arrived at Riley at about 7:30 am, having survived the 3-day bowel prep.  Sadie made a new friend; a little boy who's about 18 months old or so.  He kept trying to give Sadie his Hot Wheels SUV, so the nurses found a red Lincoln Navigator Hot Wheel for Sadie to keep.  That kept her distracted until it was time for her to go back.  She went into surgery just before 9 am.  The surgery is expected to last about 2 hours.  I'll post more later, including a synopsis of our adventures over the last couple of days!

Sunday, January 23, 2011

Long Overdue Updates, Part 2

'I'm not impressed...'
After Sadie's birthday came, of course, Christmas!  This was her first "real" Christmas, since last year she celebrated in an incubator in the NICU.

In January, we had appointments scheduled with 4 of Sadie's 6 specialists at Riley.  Developmental Pediatrics came first.  Concerns about Sadie's physical develpment persist.  She has hypotonia, particularly in her legs.  She also has not grown much in length over the past six months.  At 13 months old she is only 27 inches long, putting her in about the fifth percentile.  If her growth doesn't start to pick up after her colostomy closure she will be evaluated for further conditions, such as mitochondrial disease.  Please pray this isn't the case.  She continues to receive physical therapy through First Steps.  Occupational therapy will be added in the very near future.  Sadie is able to stand but cannot pull herself up.  She rolls but does not crawl.  We ordered Hip Helpers, which just arrived this week.   Hopefully she will show improvement with those.

The same week Sadie had a follow up with surgery.  And, yay!  We have a date for colostomy takedown:  February 2, 2011.

Last week, another trip to Indy to visit Nephrology.  Labs drawn that day showed normal kidney function and, for the first time, normal chemistry--no more metabolic acidosis!  At least not currently.

Tomorrow we head back to Urology.  We'll start with an ultrasound of Sadie's kidneys and bladder before seeing the doctor.  She's having good, wet diapers.  And with normal labs I expect that everything will be okay at that visit.  She seems to have zero complications from her surgery, and I'm hoping we can stop the daily antibiotics.

That's pretty much it for now.  We are anxious for the colostomy takedown; I almost cried the last time I called to order ostomy supplies, knowing I'll never have to order them again!!!

Sunday, January 16, 2011

Long Overdue Updates, Part 1

So much has happened around our house in the last few weeks!  Starting with Sadie's birthday party...
The day started with a visit with Santa.

After meeting Santa, we rushed home and got ready for the big party!

The party theme was, "Sadie's Sweet Shop."


The "Sweet Shop" spread.

The cake.  (I wrapped foam balls like candy for decorations, and they aslo served as favors for the kids.)

The Birthday Girl--pre-cake.

Discovering the joy of presents.




The first wonderful bite of cake!

More to follow...