Some Good News

Emily had her routine visit at the CF Clinic yesterday and it was a great appointment. She gained a little weight and overall they are very pleased. We can cut down her nightly feedings to 3 times a week and hopefully within 6 months we can stop those all together.
Daycare finally saw the light and agreed to let us get a note from her doctor saying that we could dose her enzymes according to the daily menu. Sadly they didn't see the big issue with this until they started potty training her. You see not enough enzumes with too much fat ends up with VERY bad accidents. No wonder it only took then a few days of that to ask what they could do to help. I fully expect to see less accidents now. Oh I'm sure the normal dosage would be fine and dandy if the child ate a normal serving but she's eating 2-3 servings of the main dish for each lunch. They have been given permission to feed her as much as she'll eat and she certainly does that. My girl is an eating machine....her breakfast this past Sunday: 1 cup chocolate pudding,3 whole Grands biscuits and some eggs. She still only tips the scales at 24.7 lbs. I hope with the enzyme changes at daycare more weight will pile on.
Abigail has finished her 1st 6 weeks of Kindergarten - wow that was quick. Granted she did miss 6 days thanks to Ike but nonetheless we will be getting report cards this Friday. She still loves school and her teacher and is making lots of friends - even some 2nd grade friends that ride the bus back to daycare. She's just growing up so fast. She's a smart little girl (what parent doesnt think that right?) but a few nights ago she said something that just left me speechless. Flashback to when Emily was born - Abigail saw her sister the day after she was born and then not again except for in pictures for 4 months. We were very careful of what we said around her and never discussed Emily as being Sick. We were vague with our answers to her questions about why she was there but it was never mentioned in a negative way. Fastforward to this week... Abigail comes over to me and says "Mom, Im so glad Emily didn't die." My reaction was "What do you mean? Die when?" and she simply said.. "you know...in the hospital before you brought her home." I was stunned. I never could imagine she would feel something like that - 1) she was only 2 at the time and 2) that was nothing we talked about even though we knew it was a possibility. That just goes to show you how much young children can pick up on.
Nothing else new going - except that I finally got a new monitor at home and I must say a 22 inch widescreen monitor ROCKS! How did I ever live without it. Maybe I dont need that eye exam this weekend after all.

What a week!

"Bag it. Tag it. Move it." That's what I was doing at work one week ago today. With Hurricane Ike approaching we had to bag and move all computer equipment to the interior offices. This is one time that having an office with a window really stinks!
I am fortunate enough to have a boss who let us all go home before noon to take care of things at home before the storm hit. We boarded up the house, brought in anything that could fly away and were ready to hunker down for the storm. My parents had a different idea though. After much persuasion, we packed a few bags, a box of things I couldn't live without and hit the road for Sanger at around 2AM Friday morning. One thing about leaving in the wee hours of the morning is that traffic is really light...so Jonathan tells me as I was doing my best to catch up on some sleep. Abigail really wanted to stay and see the storm but I told her she could take her "hurricane crackers" from the hurricane kit and she was ok with leaving. It's nice that sometimes it's the little things that can make a child happy.
We got to my parents on Friday morning and parked ourselves in front of the TV to watch any news we could get about the storm. We woke up early Saturday morning to see the news flooded with pictures of the devastation left behind by Ike. The Galveston that we loved to visit may never be the same again. We spoke to our neighbor and he let us know that our neighborhood did not lose power and we had minimal damage. We are SO thankful for that.
Work was closed until Wednesday and schools were closed the entire week but we headed home late Sunday night. We inspected the house Monday morning and found no damage at all. We were very lucky because some people in the neighborhood did have some roof damage. We took a drive around town and there were trees down everywhere. Very few street lights were working - if they were even still standing at all. It was just a mess. Nothing compared to what happened on the coast but definately not how we left things on Thursday.

Here are some pictures I've found online - these were sent in to TV stations by viewers.

Waves rolling over the top of the seawall in Galveston.

Waves crashing in front of the memorial for the storm of 1900 on seawall blvd.


A house on fire during the storm.

Boats destroyed by the storm.

Bolivar Pennisula

Seawall Blvd in Galveston

Houses destroyed

I-10 in Houston - looks more like a river

The storm approaching Katy

Damage around Katy

More damage in Katy at one of the high schools

Such long lines for gas now.

Damage in Downtown Houston

Just loved this picture - they get everyone to help out with cleaning after the storm - even the animals.

1 in 70,000

That's what Emily is.... 1 out of 70,000 children and adults in the WORLD that have Cystic Fibrosis (CF). This fact brings forth so many emotions that it's really taken me 2 1/2 years to really let me feelings be known. For those who might not have read my blog from the beginning or those who might not know her story here is a brief recap.

Emily was born with intestinal blockage - which apparently is a big symptom of CF. They immediately did blood tests when she was born and on Jan 23, 2006 we were given the most devastating news of our lives. Emily had Cystic Fibrosis. For this to occur both Jonathan and myself had to be carriers which was so shocking because there was no family history of CF.

If you are anything like myself you might ask.. what is CF? Here is an excerpt from the Cystic Fibrosis Foundation.

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

There is NO CURE for this horrible disease. The predicted median age of survival for a person with CF is more than 37 years. Sure that sounds great - the age of survivial has grown and probably will each year but knowing that possibility of her not living to see her children grow up if she is even able to have any just kills me. As a parent we want to be able to take care of our children and make everything OK but then something like this happens and there is nothing I can do to make it all better.

One might think after 2 1/2 years I'd be more accepting of this disease but actually I'm not. Maybe I've been in my own little state of denial and have pushed my feelings deep inside but it does cause me to have so many questions that there will never be answers for. I still want to know WHY. I can't help but to blame myself for all that she has been through and I'm not sure how to get over that blame. It has caused me to question God - why does he allow things like this to happen. One of the things that just really burns me is something we saw in the NICU. Here we are good parents who did everything they could to make sure we had a healthy baby and then were faced with this disease. Right next to use was a baby whose mother had been smoking, drinking and on drugs (according to the nurse this was not her first child in the NICU for the same reason). Ya know what... that baby wasn't there very long before he got to go home. As the days, weeks and months passed us by we saw many babies go home and it just made me SO bitter - it just wasn't fair.

I do realize other parents are in the same situation as me and I wonder how in the world they get thru it. People tell me all the time how strong we are but ya know what, I'm not. I dont let anyone see how often I'm upset over all of this and how scared I get every time Emily gets sick.

I'm so thankful that Emily is doing so good. It's a daily struggle though. She has lots of meds and treatments she has to do and getting her to maintain her weight and even gain any is so hard. So many people were there for us when she was born and in the NICU but now that we are home dealing with daily life, where are all of those people? I feel like we have just been forgotten now that she is home and "looks" healthy. I'm tired of being asked if she will grow out of this or if it will go away. No she wont - she will have this for her entire life even though she may not look like a sick little child.

I don't mean for this to be a pity post at all - I just needed to get some things off my chest and maybe this post is more for me than anyone else. I do have one plea though. If you find that you are in a position to give to a charity, please consider giving to the Cystic Fibrosis Foundation. While there are many other childhood diseases out there, a lot of money goes to research for those and there ARE cures for them. Not for CF - you don't get phone calls or see donation cans all around like you do for other things. So when I politely decline to give money to these other causes, please know that it's not because I dont care... it's because I choose to give my support to a cause that could help save my daughter.