Health Update on Caroline

Many of our friends and family have been following Caroline's health over the past month as she has endured, what seems to us to be, endless tests. Although we sometimes feel like we really have no additional answers, that's not really true. So here's what we know:

• She continues to have elevated alk phos levels (only your bones and liver make alk phos)
• Her high levels are coming from her bones, not her liver - we know this definitively
• She may have a separate liver/GI issue, but this is not our primary focus right now
• She does not have any blood infection that has been identified, her five day blood cultures will be back tomorrow (Thursday)
• Her oversized head is full of good thinking stuff and a few additional pockets of fluid. The doctors are not worried about these today, only if she begins to fall behind developmentally. So, no more CTs or MRIs.

Today, we had her skeletal survey. This was a serious of x-rays of her entire body to really look at her bones. The nephrologist and bone and mineral specialists want to rule out the possibility of any lesions, tumors, breaks or fractures that could be causing the high alk phos levels. They told me to plan for an hour of scanning when I made the appointment, but that sedation would not be necessary. I was bewildered by this, but thankful. 

When we arrived today and finally were called back to radiology, I got her undressed and then the techs asked Patrick and I to wait in the waiting room. They said she would most likely be unhappy and it would be better if we weren't in the room:( The good part was it was really only 25 minutes or less and they were already coming to get us - complete relief. They said she did great!

We will hear the results tomorrow - fingers crossed there is nothing there. If that is the case, we will go through another round of blood work to determine where is levels are again and then determine which, if any, specialists we need to see next.

I think we're closing in on this - but Patrick and I both think that this is a very cyclical presentation. We believe she has had "whatever this is" several times as we've watched the pattern repeat. Her stools are starting to change again and her appetite is low. We're working hard to push liquids to keep her wet 3 times a day - so far, we've been successful!

I know this is just part of who Caroline is - but I have a whole new level of appreciation for the waiting and anxiety that moms and dads feel when their kiddo is just a bit off their "normal". After 3 great stay at home days with Mimi and Kristine, we're going to brave daycare again tomorrow. If our eating and sleeping is not successful we'll work on another plan for next week.

Thank you for everyone's ongoing concern, love, support and prayers. I will post more updates as we have them. Sweet dreams Caroline - here's to uninterrupted sleep tonight and a hungry girl in the morning.

Lost Poem

So - many of you know, I am a constant doodler. Today, I found a little ditty I wrote early this summer. I was searching for real work related notes and found this written on the last page of one of my notebooks (amid neurosurgery marketing plans). Most likely following a sleepless night with Sweet Caroline.

Many of you also know we have a neighborhood owl, who typically wakes us in the middle of the night (3 - 4 a.m.). Often as I sat up with Caroline, I could hear the owl and her sweet voice reminded me of the soft, yet large voice the owl used to make her presence known.

Sweet Night Owl

Sweet night owl, hoots soft and sweet

Even as you’re fast asleep

I love your perfect lips and cheeks

Rest evades us, it’s sweet owl you speak

Nearly silent, but sweet as music

You sing your own lullaby

And both of us hear it

I adore your sweet tone

There’s nothing more innocent

One day you’ll sleep

But until then…

We’ll sing

Sassy Georgia

Georgia, who never wants her photo taken, decided last night to 'ham' it up. She snapped photos of both mom and dad and then asked for her photo to be snapped. She found a little bit of attitude. Perhaps she was back in single child mode since Caroline feel asleep for the night on the way home from the pediatrician's office around 5:45 p.m.

After a full morning at Hoots and Howls at the zoo, the girls both enjoyed a little bit of vanilla ice cream while we waited for the tram in Africa. Within minutes Caroline's chin broke out. This from the girl who eats yogurt and cheese on a daily basis. I didn't think much of it, but when she woke from her nap late in the afternoon, her eyes were puffy and her eyelids red, so I called the pediatrician to determine just how much Benedryl I could give her. Of course, they insisted on seeing her. 

The outcome, just a really sleep baby from the Benedryl and she was out for the night on our way home. She slept in the car until 8:15 p.m. when I moved her to bed. Poor little pumpkin. It did allow for a fun dinner of pigs in blankets (Georgia's first experience), several games of Twister (our latest garage sale purchase), and a fun photo shoot.

We love you Georgia Claire and all of your attitude!

SD Sale Photos

Georgia had a lot of fun at the sale and with her cousins - Caroline endured and slept a bit:)

Two Full Days of Auction Fun.

A few parting shots with one of mom's favorite trucks...

South Dakota Sale

It's been nearly 9 months since Uncle Jimmy was called home. It seems like such a long time and then in the same breath, like it was yesterday. Patrick and Uncle Topher have been busy...I think with quick math, I figured the Murano has endured 12,000 miles back and forth to SD (that's quite a bit of gas money), Kiewit Power has provided nearly four weeks of vacation for sale related events and on the low side these two have lifted, sorted and carried more than 15 TONS of STUFF! 

We know that 14 tons is the bare minimum, since they loaded and then unloaded 7 tons to the dump. Even when you see the photos it's hard to imagine the shear volume of stuff they have sorted, cleaned, boxed, emptied, carried, carried again, loaded onto trailers, drove to a different location, etc. You name it, they've done it. Uncle Jimmy is proud, I know that much - these two have worked as a team and conquered a lifetime of collections. In fact, maybe two lifetimes - Uncle Jimmy was a collector!

After so much work, the results were disappointing on so many levels, BUT, progress has been made. Only one more sale is left - the farm will be sold on October 4 and Patrick will endure one more trip back home. Following that there is the formal closing of the estate, the final accounting and distributions. For those that love their family members you may prayerfully consider who you have chosen to be the executor of your estate. Although I know Patrick has done an outstanding job, it is truly a second full-time job and he luckily, had lots of help.

I will post photos soon. Cheers to you Uncle Jim, you had an amazing collection of so many things. May we be inspired by your collections to perhaps, keep ours to a minimum:) Nice work Patrick, we're proud of you, but selfishly I'm really looking forward to having you back to our family full time after the first of the year!

So Many Updates...So Little Time

So, I needed to post these updates nearly 4 weeks ago. We had the best weekend and it was full of firsts. There were also several additional milestones I missed along the way. Now I'm playing catch up. So much more to come...

1. Caroline shared her first word with us - it is clearly 'Hello' - September 9
2. Georgia and Caroline engaged in their very first game of hide-n-go-seek. Self initiated by Georgia, it was pretty cute. August 31
3. Caroline is also sporting 2 small teeth on the bottom - after what has felt like months of teething, we celebrated her 11 month birthday with two tiny presents - August 18.
4. August 4 - Caroline showed us her first moves and started crawling.
5. August 19, both Caroline and Georgia were officially back in 'school' for the fall.
6. August 29, first official photo shoot for Caroline. Thank you Marcy! Great pics of both the girls, but older sister was a stinker, so only one of them together. Soon a sneak peek.

Photo Shoot

So, last Saturday after wanting to capture a few photos of the girls in some sweet new outfits from 'Aunt' Jodi, I finally made it happen. Out of literally 100 shots, I didn't get anything good, but GA was a good sport, so I dolled a few up.

For close family and friends you know how infrequently Georgia decides to smile for photos, so I figured I would make work what I could. Scheduled for a 'real' shoot next week and looking forward to it!

Until then - enjoy these 'mom' shots.