Friday, September 9, 2011

Welcome to 2011 (9 months in...)

So this year has been amazing!

Izzy had another gymnastics birthday party to celebrate her 3rd birthday. Izzy moved up to pre-school. We took a trip to Disney World. Izzy joined Ballet, Roller Skating and Gymnastics full time (gosh, she sounds really athletic but she is as clumsy as Mommy and Daddy.) We skipped Great Strides but Mommy and several friends and co-workers ran in the Brew-to-Brew relay race (about 45 miles!!!) to benefit the local CFF chapter. Mommy also ran in Warrior Dash. We have been to the zoo several times to see Nikita (the new boy polar bear.) We went on field trips and visited family and Izzy is so excited for Fall, for pumpkins and Halloween and of course, Christmas. We have also been there for our families as they struggle through some moves, births, deaths and weddings. It has definitely been an adventure. Please enjoy some of the pictures from Disney World posted below.

Wednesday, October 27, 2010

Heading to Halloween Town

Things have been well super busy as usual at our home. Izzy has continued to have a wet cough for a long time with some retraction. She is going on her 4th week straight with a wet cough. She has only cultured Staph so far and is once again on Augmentin.

I try whenever possible to remain upbeat and optimistic about Izzy's health. Those of you who know me well know how much of a struggle this is for me. I am not necessarily a pessimistic person but I really see myself as a realist. Might be part of being born and raised in the Show Me State or watching several personal things not pan out. For me, hope is definitely a battle to hold onto even on good days. But enough of that, onto the amazing, annoying, angelic, naughty Izzy.

Izzy is really forging her own path these days but unfortunately, I don't think she let herself in on the plan. Most days she has a hard time deciding if she wants to snuggle with mommy or scream in my face. I have personally experienced both in the same 5 minute period. To say she is mercurial would be an understatement. Most of the time my husband and I find these moments funny but occasionally we do experience that odd phenomena called parental frustration. We each have our own ways of dealing with it. Mommy needs away time which actually is true for any conflict. My first impulse is to back down and to get space. I normally have to force myself to be assertive in the workplace and to stand behind my thoughts. Daddy wants to argue with logic and sway his opponent. I have to tell you that neither one of us are doing well on our own with this. Mommy often cannot get away and my two year old is definitely more assertive than I have ever hoped to be. So some days Izzy goes to school wearing black dress shoes, sparkly jeans, pink ballet socks, a red minnie mouse t-shirt and purple headband. I can only hope that the school thinks that daddy dressed her. Meanwhile, Daddy has found himself at an impasse with Izzy several times. The stand offs are loud and sometimes involve smacks and I'm not talking about Daddy smacking Izzy. The whole process has caused bed time to move nearly 2 hours later some nights. But as hard as being a parent is there are those special moments when you just can't imagine what it was like to be able to just do what you wanted when you wanted.

Izzy is super excited about Halloween but does not really get the concept of a holiday. She is sure that Halloween is a place that we are just refusing to take her. So when we helped her into her Tinkerbell costume for the trail Trick or Treating this weekend, she was justifiably excited. She was sure we were heading to the elusive Halloween town. Imagine her horror at learning that lots of things about Halloween are scary. This morning she told me, "Mommy, I like to be Tinker BELL. But I am scared of Halloween town. We don't need to go there anymore okay. It's a scary place."

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.

Thursday, May 13, 2010

Smoothie Time

Izzy has been doing so well with her sentences that strangers are starting to comment on it. I guess it doesn't help that she is so tiny. Everyone thinks she is still 1 and then she pops out with a full sentence like, "Mommy, can I please have a smoothie?" I seriously thought the girl's eyes at the smoothie shop would pop out of her head. She was surprised to say the least.

Sunday, May 2, 2010

Great Strides 2010

So I will post pictures after I steal them from some of my friends pages. I unfortunately left my camera at home!

The walk was a great success this year. To date, we have raised $1800 but are still attempting to raise more. So if you haven't had a chance to donate, you still can yet. If you have donated, THANK YOU! But feel free to give more! CF is an orphan diease, which means that it doesn't receive funding from the government towards research also less than 30,000 people in the United States have CF, so there isn't a lot of financial motivation for large companies to develop treatments or a cure. Every little bit helps give Izzy more tomorrows!

We are walking in 2 weeks in Jefferson City as well.

The walk was a little cold and the sky a little overcast but we walked the whole 2 miles this year. Izzy rode most of the time in her wagon with one of her friends.

In attendance this year were several of her birth month buddies from one of my online chat groups. Izzy got to play with Harli, Hadley and Sloan all day Saturday! We had red balloons for Conner. There were several other teams wearing red for Conner.

Overall, it was a great day! I hope everyone else had a great weekend! I'll post pictures soon!