Merry Christmas!

I know.. it's been a while since I've posted anything but around here no news... is good news! It's been a fairly uneventful few months and I'm quite thankful for that. The holidays have crept up on me way too fast and I'm in no way ready for Christmas. I did manage to get the girls out to visit Santa yesterday... I was very pleased with their picture. Enjoy!

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.

Kindergarten at Last

Monday was the big day. Jonathan and I both took Abigail to school and walked her to her class the first day. She was very excited and not a tear was shed. She has had a great 3 days and she has a WONDERFUL teacher. So far she enjoys it and can't wait to go each morning. Here are some pics from Monday morning.

Picture Time

Meeting cousin Zoe for the first time. Cooling off in the pool.
Emily LOVES cake.
Abigail's birthday party.

Abigail and her best friend Zane.

Striking a pose after having a day at the salon for her birthday.

T G I F!

What a long week we had. Every other night we seemed to have something to do to get ready for school starting. Last night was Meet the Teacher night. Mrs. Luna seems very nice and Abigail really liked the room she's in. Let's just hope she feels the same Monday morning. I'm excited that even though I do work full time I'm able to particpate as a "brown bag Mommy" to help out the classroom. They will periodically send items home that need to be cut, glued or colored and then I'll just send them back. Now I dont feel so bad about not being able to volunteer to help out during the day.

The hardest part of getting ready for Monday will be Abigail's lunches. She is the worlds pickiest eater so I'm not sure what to even send in her lunch. She will eat salad and most fruit but hardly eats any meat at all. She has informed me she'll take salad and noodles.. yes noodles - plain with a little salt. NO sauce. BLAH how boring is that.

Work was extremely busy - i was the only support person and times were a bit hectic. I did manage to sneak out a little early today though.

I'm sitting down right now to upload some many overdue photos to share. They will be posted shortly.

Kindergarten here we come!

Monday is the day my baby heads off to Kindergarten. She is very excited about it. We had parent orientation this past Tuesday and while we were meeting, all of the children went to have their pictures taken for their ID badges and listen to a story. She came back with a smile and had already made a new friend. So maybe this won't be so bad afterall. I was a bit surprised at the amount of things they will be doing and learning at this age. Some of that stuff I know I didnt start working on until 1st grade. I guess times have changed a lot - or I'm just getting old!

We found out last night her teacher is Mrs. Luna. This itself made me laugh a little. I felt it was a sign that things would be good. Abigail LOVES space and the solar system and here are just a few things I thought were neat: 1) her school is the Creech COMETS and the inside of the front foyer has the solar system painted on the ceiling and 2) She got a teacher names Luna which is another name for Moon - once again with the solar system. We get to meet her teacher tonight which should be a lot of fun.

Emily aka "the eating machine" is doing really good. Potty training is going.. well not TOO bad but not as fast as I'd like either. That's ok - i'm not going to push her because I know she'll do it when she's ready. They are really doing a lot of work with her on that at daycare too so that is helping.

I'm not sure Jonathan and I are ready for this big change in our lives of having a child in school with homework and all but I'm sure we'll manage just like everyone else. I'm sure I'll be taking lots of pictures on Monday so I'll have to post some. Actually I need to post a lot of pics since I've been so behind on them - I need to make time to do that this weekend while we are sitting inside keeping dry from all the rain.

Emily Update

Emily has been doing really well lately. She eats like a horse (which is what she needs to be doing) and just overall loves food. Thank God it's my CF child who loves food so much. Today we head to her doc to learn how to give a new med.. she'll be doing hypertonic saline treatments for her lungs. We have heard great things about it. Today is also VEST DAY!! CF'ers have to have Chest PT - which until now Jonathan has done just by pounding on her chest/back with his hand. Emily LOVES her treatment time with Daddy too. She has finally gotten big enough though for the Vest. We'll hook her up to the vest and it will shake her really hard to help loosen up anything in her lungs so that she can cough it up. I'm not sure how she'l like it but hopefully she will do Ok. She'll be able to get her treatment while watching TV or whatever. I still have a feeling she'll want Daddy to give a treatment at night too just because it always puts her to sleep.

Goodbye Baby Girl... Hello Big Girl

Abigail turned 5 on Monday. WOW - has it really been 5 years since we had her? It just seems like yesterday that she was a tiny baby. I took her for a special afternoon of just the two of us on Monday. We went to a place called Sweet and Sassy - a salon for girls. She LOVED it. I'll post up some pics later. She had her hair washed/cut/styled, a manicure and pedicure and was covered in glitter from head to toe. She pranced around like a princess and said she had the best birthday ever. Of course that was topped off by dinner at the place of her choosing... yes we went to McDonalds. Not the place I would have chosen but hey it was her birthday so she got to choose. After questioning her to make sure that's what she really wanted she told me that I would get to choose a place to eat on MY birthday and she wanted McD's for HER birthday.
Last weekend she got her big surprise.. a visit from her best friend/boyfriend Zane and his family. They came over Saturday night for dinner and the kids had a blast playing. It was also nice for some good adult conversation too. His Mom brought Abigail the cutest princess birthday cake too - I'll have to put those pics up too. This weekend we are heading up to Sanger to my parents house for Abigail's birthday party. It should be a great treat.

Where has the Summer gone??

It seems like we were just waking up to the beginning of summer and now it's almost over. It's been a very busy summer for ustoo . We put the girls into a new daycare/preschool at the beginning of June and I would have to say it's by far one of the best things I've ever done. Abigail had been at her previous daycare since she was 6 weeks old so I was wondering how the transition would be for her. She LOVES the new place. From the new friends, field trips and gymnastics she's had the best time. Emily has been doing great too. She's grown up so much just in the past few months. We are in the midst of potty training and as most of you know that can be a chore in itself.

Healthwise everyone is doing well. Due to some blockage in one of her lungs, Emily's had some new meds added to her treatment schedule as well as an increased number of times she has to get chest therapy. Daycare is wonderful about doing this for her too.

Life as we know it is about to come to a halt. In just about 3 weeks my baby will be starting Kindergarten. We've gotten the school supplies and of course a new lunchbox of her choosing and she is super excited to start big girl school. She's ready to learn all about space she says. She's definately going to be into learning all kids of science stuff. She informed me that she did not want me to take her on her first day ... she wants to ride the bus from daycare like all the other kids. Wow - I can't believe that. Well she might ride the bus but I'm gonna be following right behind it!!

Also - Ive added the link to the blog I visit most often. This blog is by a husband whose wife has Cystic Fibrosis. They have been thru SO much in the last year but it's a definate showing that miracles can happen. Take a look thru it if you have some time.

Another Update from a Bad Blogger

When I started this blog I intended on updating frequently but I guess life sometimes gets in the way and I've become a bad blogger. I wanted to use this as a way to document the ups and downs we are facing with having a child with Cystic Fibrosis as well as have something to look back on to remember all that she has been through (like we could actually forget!). I'm going to try to update this more often with more than just Emily info but about the whole Fosburgh family.

The past few months have been incredibly great for us. Back in November I was approached about a new job in another department here at MD Anderson and was promoted in January. Along with a great raise came such happiness. Probably for the first time I actually LOVE my job. Sure I've liked what I've done in the past but this is truly a blessing. I work for a boss that understands my needs to be off for many doctor visits and doesn't give me a hard time about it. It's wonderful being treated like an adult and not being hassled when you have to take time off.

Jonathan has been busy busy busy at work - often working weekends for a project that has recently come to a close. It's good to have him back at home on Saturdays now. He's also visiting the possibility of sinus surgery but probably not until after Sept. Other than work he really hasn't had a lot going on.

Emily recently went for her quarterly CF Clinic visit and I must say it was AWESOME! It only took 2 years but she is finally on a growth curve. While she's still very small - her height and weight are proportionate so they are very pleased. We took her off of her daytime formula tube feed so she only gets that overnight now as supplemental calories. Her appetite has increased and she finally made it to 24 pounds. It may still seem small for a 2 yr old but for her it was a great achievement. Since her sinus surgery she has not had any sinus issues at all - another blessing because now she is able to breathe and sleep much better.

Abigail is doing great too. Last week we had to register her for Kindergarten. I just can't believe she'll be 5 in August and ready to start school. She's worried about other children not knowing her name but she'll quickly get over that I'm sure. She doesn't want to leaver her "old" friends behind and leave daycare but I've assured her she can keep in touch with them if she wants. She's been keeping in touch with her best friend Zane whom she met in the toddler class at daycare. He left to go to another school about a year ago yet they are still as good of friends as ever. His mom and I often get them kids together (he has a brother Emily's age) for playdates. She tells me all they time that he's her boyfriend and one day when they grow up they are going to get married (oh how I already dread the dating years!) and be doctors.

It seems as if both girls are at a point in their life where cleaning up anything is just unbearable! No matter what I try to do, nothing seems to work. I really don't want to have to call the SuperNanny!! I tell myself I will NOT keep picking up their messes without their help because they have come to expect it so I just close my eyes and try not to look at the toys that have made their way all over the house. We've just started a button jar for Abby so when she does something good or helps without being told she'll get a button - which will lead to a good reward when she reaches the goal. I'm not sure how it'll work but I'll let ya know.

Overall 2008 has started off great and I'm keeping my fingers crossed for it to continue.

Sinus Surgery

All has been going great on this end. Emily had sinus surgery almost 3 weeks ago and she's doing great! She was a real trooper too - only needing pain meds of any kind the first couple of nights and that was just so that she'd sleep and not pick at her nose. She was looking rough around the edges when she came home with black eyes and bloody nose but a few days later she was back to her normal self.

For the past couple of months we have decided to discontinue her formula feed during the day and her eating has greatly improved. She loves food and loves to eat - especially Chocolate!! She's gonna have a great time at Easter this year.

We are happy to have made it thru yet another winter with no major illnesses and no hospitalizations.

2 years

Emily just turned 2 and boy what a difference 2 years makes. She's doing so good. The docs are happy with her weight and we've just discontinued her daily tube feeding (she still gets it overnight though). She's my little eater too. She LOVES spicy foods and will try just about anything. She's completely caught up to other children her age if not above. She's quite the talker when her sister lets her get a word in. She's very very strongwilled - she's our little troublemaker and gets into EVERYTHING she can.

I can't believe she's 2 already - time sure has flown by.