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.