Olivia's Favorite New Song

Olivia will stop anything she's doing when this video comes on -- even though she doesn't really use a pacifier at all.

Be warned, it's a catchy (annoying) little tune you'll have trouble wiping from your mind the rest of the day.

Olivia & Her Disco Crib

We made our monthly pilgrimage to Mott Children's Hospital in Ann Arbor to check in with Olivia's Liver and Kidney specialists. We were able to schedule both clinics and her Kidney Ultrasound on the same day, making it much easier than having to make 3 separate trips of course. We have been spending the night before her appointments in a Hotel to avoid having to drag our butts out of bed before 5am and suffer the rest of the day.

Olivia actually travels very well. She likes her car seat, once we get in motion she tends to settle

right down . Consequently when we arrived to our hotel Olivia was well rested and ready to Parrrttaaayyyy!!! She was wound up and didn't want to settle down. We ordered room service, fed & changed Olivia, and got ready for bed. Last week Sara found a nice travel Crib/Bassinet (see picture) on E-Bay for Olivia so that Little Peanut would have a nice place to sleep, little did we know what we were in for. It plays lullabies and an electronically bastardized version of Pachelbel's Cannon - , it vibrates and has twinkling lights. After we placed Olivia in her new crib and turned out the lights ... finally bedtime or so we thought.... Sara and I look over to the crib and it looked like there was a disco going on. Flashing lights, swinging ornaments, and thumping feet -- all to Electronic Pachelbel's Cannon. Olivia has taken to lifting her feet and slamming them down onto whatever is in their way, last night it happened to be the end of the crib. This 'party' - punctuated with overtired baby wailing and foot thumping - lasted close to 30 minutes before she decided that sleeping was the best option. She was kind enough to let us sleep from 11pm until 5am without waking --- Yay!!

Our Tuesday started with a good weigh-in. Olivia easily topped 10lbs, tipping the scales at 10lbs 5oz! She managed to put on 1lb 3oz since her last Liver appointment. For her combination of Heart & Liver Disease everyone was very happy with this gain. Olivia got compliments from "Wow, she looks good" to "Hey you're getting some meat on those bones!" She actually fell within the normal desired growth rate! Obviously the new formula that she's been on for the last month has helped her a lot. She also seems to like it quite well, which, given all the crap we've had to medicate her with is a relief.

With her weight no longer an issue, we could turn to her other two issues on Tuesday's agenda: Itching and a Kidney Ultrasound. Over the last 2-3 weeks it has slowly become evident that Olivia's elevated Bilirubin values have are causing her to itch - she rubs her eyes with her

hands or rubs her whole face on our shoulders when she is being held. This is a very common development for anyone that has with severe cholestasis (bile build-up). We had been using Benadryl at night, but it seemed to be only helping minimally. Dr. Lopez wants us to try Hydroxizine (Atarax) to fight her itch, especially at night. During the day Olivia doesn't seem to itch too much, but when she starts to settle for the night, her itching starts, hopefully this new antihistamine will bring her some relief and make her drowsy enough to sleep through the night.

We capped off our visit with a quick detour to ultrasound land to settle a big question about her kidneys... Here's what I posted about our May visit with the Renal Team

The other semi-surprise today was that Olivia's Abdominal Ultrasounds (3 in total) taken over the last 2 months, don't all agree on the kidney findings. All the scans showed 'small' kidneys, but one -- the most recent one -- did not mention anything about a multi-cystic right kidney, while both the initial exams did make note of this finding. The possible problem here is that the Ultrasounds were not "Kidney Specific" but were more liver focused. A Kidney Specific Ultrasound has been set up for August to fully evaluate these discrepancies.

Our ultasonographer was able to get some very good pictures of Olivia's Kidneys. Her Right Kidney was obviously small

and not normal in consistency. We were able to see some of the previously described cysts on her right kidney. Her Left Kidney meanwhile "looked pretty much normal" according to the ultrasonographer. She did not feel that it was significantly smaller than it should be for Olivia's age. There were also no obvious cysts seen today. Mind you this was just the initial reading by the ultrasound tech, the study will still need to be read by a Radiologist, who will hopefully confirm these findings.

We've been graced with so many complications and negative developments over the last few months that today seemed to lift a great weight off our shoulders. This truly has been the best news we've received since, geeeze I don't know when. While Olivia has many more trials ahead, somehow the sun shone just a little brighter on the drive home today.

Save us a spot in your Disco Crib Olivia --- we want to join the party!

Odds & Ends

It's been a very uneventful 2 weeks so here are a few miscellaneous notes/thoughts that wouldn't make a separate coherent post. No Dr Visits for another week :) So next week should have reports from both Liver and Renal.

Olivia had a cardiology appointment 2 weeks ago, everything went very well. Her Echo showed no changes. Her function continues to be good, her Oxygen saturations are steady in the 82-82 range. Dr. Dohmmer was very happy with Olivia's progress. While UofM would like Olivia gaining weight faster, Dr. Dohmmer feels that her weight gain is good/acceptable for her combo Heart/Liver issues. We don't have to go back until end of July

Still trying to get the UofM team on the same page.

Renal & Liver aren't playing well together.... not that they are fighting, but they just aren't

talking as much as they need to for Olivia's sake. When one group makes a change in her medications or treatments it shouldn't be up to us have to inform the other group. This should be noted in her chart and be obvious to anyone reading them.... either things aren't getting put in the chart or they aren't reading the chart. Luckily we'll have our next meeting with BOTH Liver & Renal back to back next week. Maybe we can force the Dr.s to sit down meet each other, sing Kumbayah or something--- well let me dream at least.

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• Olivia's still gaining weight, she's now just over 10lbs., meaning she's put on 4.8lbs since her lowest weight w/o having her heart fixed and her liver malabsorption issues we think this is just dandy.. it doesn't matter what "Percentile she's at" what matters is that she's eating and growing w/o a feeding tube!
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Olivia's getting excited about meeting her cousins from Missouri & her Grandpa from Kansas next week -- well in actuality O has no clue, but Sara and I are excited for her. If we get the pool warm enough, maybe she'll even get her first swimming lesson.

The Diva's finding her voice. She's been making cooing and gurgling noises for a while now, but over the last few days she's making a very distinct 'hiss/gurgle' noise when she's happy. We tried to capture it on the following video.

Just last night she started working on a second voice, a nice shrill squeal that I fear will develop in volume and intensity as she perfects it... ear plugs please. I managed to just catch a quick snippet of the sound here:

Do all Babies have a built in meal/food detector? Olivia can be in a deep sleep but as soon as Sara and I sit down to eat our meal, you can bet that Olivia will start screaming bloody murder. It doesn't matter if she's been sleeping for 5 minutes or 2 hours, she knows when we are about to eat. It doesn't matter if she's in her bouncy chair with us or across the house in her bedroom, that girl's got timing.

Many people have asked us "How are you doing and holding up?" Actually quite well. I like to describe what we're experiencing akin to a duck swimming on a pond: Nice and calm on the surface but paddling like mad below the water line. Of course that is a great simplification of my/our feelings, but for now that will have to do, there is much much much more to write on that subject, .... at a later date.

Once again Olivia, Sara and I would like to thank everyone for their continued inquiries, well wishes, gifts, meals and prayers; it's all greatly appreciated.