Wednesday, June 30, 2010

"Mommy, today is Wednesday."

This is the sentence that Izzy spoke to me this morning as I was putting her nebulizer mask on for her 5:30 AM breathing treatment. Of course, this is even more impressive because it actually is Wednesday and Izzy knew that yesterday was Tuesday as well. For two years old, Izzy is doing remarkably well on her communication and her inituitive thought process (although I might be baised.)
Things have been going really well with her Montessori school. She finally took a full nap yesterday and not only ate part of her lunch but also ate her afternoon snack and drank some of her milk. She loves school and is very excited to go each day. I think that she might even be a little disappointed when the weekend comes.
I am having a great time at work just learning the ropes. I believe that my position is a great fit for my background and experience. Plus, my coworkers are a pleasure. We are actually having a birthday month lunch today and I brought baked beans.
This weekend is 4th of July. The neighborhood kids are already setting off fireworks but thankfully not in the direction of our roof and Izzy is sleeping right through them. My mom is coming up Friday night and I'm sure we will do some swimming and BBQ'ing but no big plans for the 4th. Also, since Izzy seems easily scared by loud noises we will probably avoid most of the fireworks displays.
I hope everyone is having a great day!

Please take a moment today to think about Conner Reed Long. His burial is today and I'm sure it is a hard day for them. I wish peace for their hearts and minds as they say farewell for now to Conner.

Sunday, June 27, 2010

Returning to Work Full Time

For the last year and a half, I have stayed home with Izzy at least part time. It was nice but also very hard for me. I was never one of those mothers that thought they would ever stay at home. I never realized the amount of actual work involved in staying home with your child. I am proud of the time that I got to spend with Izzy but I am also very happy to be returning to work full time. At Izzy's CF clinic this month, we had some very open discussions with her doctor regarding Izzy's general health and her continued improvement. We and her CF team feel this is the ideal time for Izzy to enter a preschool setting full time. While waiting is tempting, we will not be able to avoid germs when Izzy enters public school and we would like her to build up some immunities prior to that point. Izzy is such a social creature that it would not be personally fulfilling to her to be home schooled. I want her to have the chance to interact with her peers and lead as normal life as possible. We are looking into what to do in situations when she is sick or there is a respiratory illness that we don't really want her around at the Montessori school. We are considering using a service for sick care where a Nanny comes to your home and cares for your child. We will be conducting interviews during the next few weeks.
We have definitely been struggling to get Izzy to gain weight. This is something we also discussed with Izzy's CF team. We discussed the possibility of a g-tube once again but have not made any plans to go forward with it yet. We definitely would like Izzy to weigh more and have healthier lungs but we are not yet convinced that higher BMIs and higher FEV1 scores are a cause and effect relationship and not just a correlation where CFers who have higher BMIs have a less severe case of CF and therefore higher FEV1 scores. Or even, that the g-tube would get Izzy to the 50th percentile. We are very hopeful that Vertex will find a cure for the Double Delta F508 mutation in the next few years. Until that time, we will continue to fight tooth and nail to keep Izzy as healthy and whole as possible.
Izzy is a fish. LOL. Not literally but she loves the water. There isn't a day since May that she hasn't asked to go swimming either in her little pool or in the big community pool. We also had her pictures taken again with Captures in Time. They are great and I will post a few here next weekend.

There is one other thing that I wanted to write about today. It has been very hard for me to write about this because it is such a painful subject but I really do feel that this is a story that needs to be shared. Late Thursday night, a wonderful little boy lost his fight with CF. His name was Conner and he was only 7. He faced many struggles and lots of pain in his short life, but he also had lots of love and great faith. His eyes were kind and his smile infectious. To read the blog his mother wrote, please go to . He was a cherished boy and many who never even met him will miss him dearly.