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!

Friday, April 23, 2010

4 hours and 40 minutes everyday

What would you do with an extra 4 hours and 40 minutes each day?

That's how long we are spending each day doing breathing treatments and CPT with the vest for Izzy. It is time that Izzy is stuck to a machine with her face covered by a mask. Normally, I put on one of her preschool shows like Sesame Street, Dora or Barney. Sometimes we do puzzles or read or dress her baby dolls but I can't help thinking about all that time just gone towards trying to keep her well.

A fight that we are going to lose. A fight I see other families losing everyday.

I wish we could spend those four hours at the zoo, or at the library. I wish I could spend those four hours pushing Izzy on the swing or catching her at the bottom of the slide. But I can't because I am fighting for more healthy time with Izzy. It's ironic really that to get more time with my daughter I have to sacrifice so much time now. So tonight when I get her up at midnight to do a treatment and at 6 AM when I wake her again to do another treatment, I will try to focus on the time these treatments will help us have in the future. Hopefully time for me to see her go to her first day of school, time where I can teach her to ride a bike, time where I can help her pick out an outfit for her first date, time where I encourage her to learn to drive a car, time in which I can watch her grow and meet her goals and not be stuck in a hospital bed fighting for her next breath.

We have a doctor's appointment tomorrow morning at 9 AM. Wish us high oxygen saturation numbers somewhere above 96% would be wonderful!

Hold your little ones close and never take your moments together for granted.

Wednesday, April 21, 2010

I never knew that I would stress about oxygen.

Today has been a rough day. Well, let's back up.

Izzy went to stay with her Noni and Papaw on Thursday night. They were going to keep her through Tuesday but Noni called me on Friday to let me know that Izzy had started to cough and had a runny nose.

Since it was just a dry cough and clear snot. Izzy stayed at Noni's but by Monday, Izzy was coughing a lot. So Noni brought her home early so we could see the doctor.

Izzy's visit with Dr. Kasper had some highs and some lows. First the high points, Izzy weighed 24 lbs 17 oz. This is up from about 23 lbs 7 oz on 03/20/2010. Izzy did not have any ear infections and she is not teething. Unfortunately, she is still coughing and running a low fever. The nurse came in to take Izzy's oxygen saturation and it was only 96%. Izzy has always ran at 99% or higher. Izzy is too little to start PFTs yet so oxygen saturation is a big clue for us on how her lungs are functioning and a 3% drop in less than a month is not something that we ever want to happen. If Izzy dropped below 94%, we would be discussing hospital stays. So luckily, she isn't that low. But we do need to get her mucus to thin out.

Here is the plan: We are increasing breathing treatments from twice a day to four times a day. That means we will be doing one at 6AM, 10AM, 6PM, and 10PM. We will run the meds completely through Izzy's mask before starting the vest. This means treatment times will go from 50 minutes to 70 minutes, because each med takes about 20 minutes to run through the nebulizer. Also, Izzy is going to take Augmentin for the next 10 days. We had a throat culture done and should hear back on it in the next week. If Izzy doesn't improve by 3 days from now, we will go in to check O2 levels again.

I hate days like this when CF just smacks me in the face.

But let's end on a good thought, Izzy told me to today that she is a very good mommy to her baby doll, Ame. She said, "Mommy, I'm a good mommy to my baby Ame. I am just like you." Which to me means she thinks I'm a good mommy!

Hope you all are having a good day!

Monday, April 19, 2010

Trying to be more active.

I haven't been doing a very good job of keeping everyone posted or blogging very often. I think once a year isn't really even considered blogging.

So once again, I'm going to try to be a better blogger. If you are just dying for Izzy pictures and updates, Facebook is the best way to keep up to date on Izzy. Search for me with my email:

Izzy is doing really well. I quit my job at SHB last January to stay home with her after she kept getting sick and having trouble gaining weight. Remember in September 2008 that she cultured PA, but since then has had clear cultures. She did get double ear infections twice. And her nose ran basically from November through March but overall her health has been good.

Izzy also got her CPT Vest in October 2009. It was $15,000 but the insurance company paid 80% and my mom, God bless her, picked up the 20% we owed for us. Izzy started out at 60% on the vest but by mid-February 2010, she was at 100%. Her lungs sound really clear. Of course, she is 2 now, so she argues with us about doing her breathing treatment everytime. Sometimes she cries and/or screams through the whole process but we don't let her take a day off because CF never takes a day off.

Izzy has struggled with her weight. At her January appointment, the clinic did discuss giving Izzy a g-tube. At this time, we have refused the g-tube treatment. This doesn't mean Izzy will never have a g-tube but we decided to try using some Boost supplements and giving Izzy time to adjust to solids before we consider the g-tube again. Izzy is still struggling to gain weight. She weighs about 23 lbs now. She is definitely on the lower end of the growth chart. Yet she remains around the 50th percentile for height. This makes buying clothes that are long enough and fit at the waist a rather hard task. If we feel that Izzy's weight is factoring into her culturing bacteria, we will definitely pursue a g-tube at that time.

I went back to work on March 1st, 2010, but just part time. I go in at noon. Izzy stays with a SAHM friend of mine. She loves staying there b/c my friend has 3 little boys. She calls the boys her brothers. They are 5,3, and 1. They get along really well. Izzy has really enjoyed her time with them. I miss being home with her and if she gets sick again, I will, of course, have to decide if I can continue working but for now it is working out okay for us.

We are ramping up for Izzy's Great Strides walk. Her team in KC is called, Tink's Team. We raised over $8,000 last year but are no where close for this year to that mark. So if you haven't donated yet, please click below and do so!

I have also posted Izzy's CF Montage video for this year. It has a lot of pictures from this year and is cute. Please watch it!