Best Appt. Ever!

Olivia had her best pulmonary appointment ever yesterday! Her doctor had talked with her geneticist about her growth because he was concerned that reducing or removing her oxygen would interfere with her growth. Her geneticist thought that the only way to tell would be to try her without her oxygen for a couple of months. Her doctor and I were afraid that if we did that and then she needed to go back on it would be brutal to put her back on. So we decided that she’s doing well enough that we are going to start going to appointments every two months instead of every month. When the dietician came in she was very happy that Olivia had gained almost a pound since her appointment last month. Next came the respiratory therapist. They always check her O2 sats on her oxygen and off her oxygen. Olivia maintained 98% without oxygen for 15-20 minutes! She’s never been that high before!! The doctor stopped back in before we left and said that since her sats were that good we should turn her down from 0.3 to 0.2 and see how she does with that between now and November. YAY Olivia!

Here's some new pics of our little cutie!

Yippee! Yahoo!

They sent us home this morning! Olivia had a great night. She was on slightly lower oxygen than normal, and did better than normal! They sent us home on her normal oxygen though. She already wanted to play outside when we got home this morning!

Surgery Update

Surgery went really well. We are settled in our room in the PICU and Olivia is napping with Joe. She is really crabby, but is at her normal oxygen with oxygen saturations better than normal. YAY!!! I have to go now though because they just said we have to move to the hall because there is a tornado warning. We'll keep you posted!

Surgery Tomorrow

Sorry it's been so long again! Olivia will be having her tonsils and adenoids removed tomorrow. She will be staying in the PICU at least one night after. We'll keep everyone posted as best we can.

Finally Updated!

Sorry it’s been so long since I have posted! Olivia is doing great! She is cruising along furniture and walls, and sits very well on her own. She is more interested in food now, but still doesn’t want to swallow. We are supposed to go see a feeding therapist soon to work on that issue. She is still on the same amount of oxygen that she’s been on for over a year now. The doctor doesn’t want to wean until Olivia is gaining weight more consistently. Her numbers have been great with and without oxygen though, so that is very reassuring! Olivia had a renal ultrasound recently also. We haven’t heard the official report from her renal doctor yet, but the report we got shows that both of her kidneys have grown since last time. That is really good news since the left one had been shrinking each time she had an ultrasound in the past. We also had some blood work done for her endrocine doctor. The results from that were really good, and we will no longer have to give her stress doses of steroids! At last check Olivia’s kyphosis in her back was slightly better than it had been. It wasn’t a huge improvement, but it gives us hope that as she starts walking more, it will improve on it’s own. We still have nurses who come into our house and care for Olivia every day. It is such a huge piece of mind for us knowing that Olivia is getting the best possible care every day. Her nurses love her and she loves them! We are so fortunate to have the two wonderful nurses that we have. Enjoy a few new pictures of out cutie pie! It’s hard to believe that she will be 2 in less than a month!

My Grandma made this apron and hat for Olivia for Christmas!

Just sitting playing with her beads!

Olivia was having a tea party using her stool as a table.

This is just one of the photos we had taken recently.