April goings on

Hi All,
Once again, life has been moving at a rapid pace and this wee blog has suffered. I have been pretty wrapped up in Olivia these past weeks as she has not been putting on weight. I have been hoping that she would make a turnaround and I would be able to blog on like normal but the longer I wait to post an entry, the more its getting away from me. So here is what I have been up to....

We have been having discussions with Sick Kids twice a week on average over the past 4 weeks trying various things to get her progressing again. She has put on 2 oz in a month which is crazy - she should have put on a pound to a pound and a half. We were told that it was either reflux (which she seems to be past - has been doing fine without any meds since January) or her cardiac condition is slipping and shes heading for heart failure again. Neither of these explanations made sense to us but we had to investigate both.

She has now been on Prevacid (for reflux) for the past 3 weeks which seems to be making absolutely no difference and after several doctors appointments and the final word from her cardiologist 2 days ago it turns out its not heart related. Her heart sounds like it is holding its own and she is not exhibiting the other classic signs of failure. She is however experiencing swelling/puffiness in her face when she wakes up in the morning which wears off as the day goes on. She had more blood taken this week to check for some rare syndromes that could be causing this but so far no word on that.

She is eating better these days as she becomes more accepting of solids. She is up to about 2 1/2 jars a day now of various foods that are mixed in with whipping cream or canola oil to boost the calories. Her formula quantity is where we are having problems. On top of the solids, she should be eating 24-32 oz per day and she is eating between 15-20 oz. They have been adjusting the strength of it weekly to try and get her to drink more but nothing is working.

We have another appointment at Sick Kids on Wednesday so we will see what they have to say about how to proceed then. If you have been keeping track, she was born on the 50th percentile for weight and after her first go with heart failure she slipped to the 25th. We managed to get her back up to the 50th in Jan/Feb where she stayed until early March. She is now at the 25th again. The pediatrician says she is burning through any reserve weight that she had built up early in the year. We need to find a solution in short order.

Our dear friend Roslynne who has been Olivia's Nanny since October has moved on. Her last day was Friday. She was never a Nanny by trade and stepped in for this temporary assignment when I was in rough shape last fall. She has been a friend of mine since I hired her to work at my bar which seems like 100 years ago now. She has been the most wonderful caregiver and support for us all during the time she spent with us and our friendship will continue as we see Ros on a regular basis. Olivia's "Auntie" will continue to be involved in her life as we are moving 2 minutes down the street from her next month :)

We found our next rental home. Can you believe we have already been here a year and our lease is almost up? Boy time flies!! We are moving up to Brampton to a lovely brand new semi. It was just built and has never been lived in. It's gorgeous, bigger and much better laid out than this crazy townhouse and get this - its cheaper! We move mid May and I will be sure to post pics when we get set up.

Well I guess I better get to bed....still been having trouble with insomnia but morning comes early around here so I think I should go and try to find sleep.