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Thursday, July 31, 2008

Susanna' BIG NEWS!!

I just wanted to share this amazing news with everyone! Susanna is an amazing faithful reader with 2 CF children, out of her now 4 children. This was actually their 5th child, but Timothy, their first son who had CF, passed away when he was just a baby. I'll talk more about Timothy and the CD they made later when I start feeling better and can figure out how to connect some of the pictures and music from the CD to the blog. CONGRATULATIONS SUSANNA AND FAMILY!!

Hi M,
I'm so sorry it's been soooo long since I've had any contact with
you. It's been a very busy and eventful time:-)
We became the proud parents to our little boy on July 14th!! His name is
Levi Gregory. He weighed 7 lbs. 14oz (same as date:) He is doing very
good and he does NOT have CF!!!! We are so very grateful to God for
that. He is a carrier, but as you know that means he is completely
healthy. I was actually very sick the 10 days or so before he was born
and for several days afterwards too, but I think I am finally getting
back on my feet. (Subsequently he came two weeks early, he wasn't due
until tomorrow:) It is so wonderful to have another healthy baby. I
have thought of you often. Hoping that your 'sickness' is getting
better, and wishing you all the "joys" of pregnancy. Really, I love
being pregnant, love feeling that wonderful little life inside, etc., but
I did hit the MISERABLE stage those last two weeks before Levi was born.
I have never been so sick with any of the others, so I'm very thankful to
be feeling a little bit more back to normal. And again, We are SOOO
thankful for Levi's health.
Also, we just went through all the 'anniversaries' of losing
Timothy. (I went into the hospital exactly 5 years from the time he went
back into the hospital, sat. the 19th was 5 years from when he died,
wed. was his funeral etc. etc) Speaking of Timothy you are more than
welcome to post stuff about the CD and Timothy's story on your blog. I
feel like it would be tribute to him and if his story can help someone
else...that would make me happy. On the other hand, please don't feel
like you have to post it, especially if you think it would be
discouraging.
I hope all is going well with you and the babies:-) It was nice
to 'catch up' on your blog and how good Lil Chris is doing:)
Please feel free to share (or post) our good news with anyone that cares
to know.

~~ Susanna

Wednesday, July 30, 2008

Updates

His cough never went away and last Thursday it turned into a wet cough. So I called the doctors, and now he is on Augmentin. He started it yesterday and takes half a teaspoon 2 times a day. Hopefully it knocks it right out.

On a happier note...last Friday on July 25th, Lil' Chris finally took his first few steps!! YEA!!! Only took 14 months:) My baby is growing
up:( Good thing I got another one on the way:) Speaking of which...I felt "her"(I just have a feeling:) kick for the first time yesterday at work. It was REALLY hard too! Lil' Chris never kicked me that hard, esp. at only 13 1/2 weeks! I have a feeling "she" is going to be a soccer player!

I'll try to get some video and pics of Lil' Chris walking soon.
M

Monday, July 28, 2008

Check out Lil' Chris' New Ride!

Friday, July 25, 2008

July Pics

Monday, July 21, 2008

Clarification

Today, I thought I would write a response to the responses I got from one of my last posts. I think a lot of people took it in a way that was not intended. That's one thing that makes blogging so hard, you can't or don't always get the whole story, so then assumptions may get made. And you know what happens when you "assume!" LOL

From some of the emails and responses that I got, it seems as though some may think that I'm in some kind of depression and am not happy with my life and don't trust God and played the blame game and so on and so on. But to set the record straight...I was just having a bad day(CF Moms get those sometimes. Am I right CF Moms? And I can't guarantee that this will be the last time I post a "depressed-like" post like that)

...I, we, are VERY happy with our life! I thank God everyday for all that he has given us and is about to give to us. I feel very lucky to have the life that I have! He has blessed us soooooooo much! We may not have everything that we want(like a stay at home job), but who does? That doesn't mean that we are not happy with all that we do have and all that God has provided for us! We know that God has a plan for us, we just may not know what that is yet!

I don't blame anybody but myself for not finishing college. I could've went away to the same college my sister did, but I chose not to. Now that I think about it, I'm glad that I didn't go, b/c that probably would've meant the end for me and Chris(long distance relationships never work;). Who knows... maybe if I went, I would have money, but I wouldn't have Chris and I wouldn't have Lil' Chris. Therefore, I'm glad I didn't go. I'd rather be poor and happy and in-love and have Lil' Chris and the wonderful life we have together....than be rich, unhappy, and not have my 2 Chris'.

One thing that I love about my husband is that he loves God. God is #1 in our life and we trust Him. We trust Him every time we step out these doors, every time we hand our baby over to the sitter, every time Lil' Chris gets sick...ALL THE TIME! Yes, we don't go to church like we'd like to, but I believe God knows our hearts, and understands why. I can't tell you how many times my sister D and other people have told me that their kids have gotten sick over and over again from being in the nursery at church. The other kids in the nursery can't help it if they are sick, but it's just not good for Lil' Chris to be exposed right now. For other families, that's fine, it's ok if they get sick. But for Lil' Chris...it's different. The more colds he gets......the shorter his life may be! Is that what you want? No, nobody wants that. His life is short enough as it is! That is why, we feel it to be our duty as Lil' Chris' parents to protect him from a VERY touchy feely church. Why they have all the pastors come around and shake and hug everybody and spread all kinds of germs, I don't know. Maybe we should find another church. But we really like that church, and feel at home there.

So, we hope that everyone respects our decision to keep Lil' Chris healthy for as long as we can by keeping church in our hearts and in our home until Lil' Chris is old enough to understand and be able to go to church classes(won't be long now:) and learn more about our Lord and Savior(I know we can't teach him everything at home;). I know what you are thinking..."But what about you and Big Chris meanwhile?" Well, Chris and I are old enough to be able to have a relationship with God even if it is outside of the church. We both love the Lord with all our hearts, and love the relationship we have with Him, and trust in Him with EVERYTHING we do, even trust in Him to guide us when making the decisions we make.

I don't mean to sound harsh, but I hope this clears things up a little bit better,
M
PS. We must be doing something right, b/c Lil' Chris has only had 1 cold in the last 14 months and has not been hospitalized at all yet.

Friday, July 18, 2008

Breakthrough

Below, I copied and pasted from an email that I get from the CFF. Just thought I'd share it with you all. See, all that money that we raised for our Great Strides Walk is going to work! This is just one step closer to finding a CURE! This is the biggest and most important breakthrough they have had in a long time......

Vertex Achieves Breakthrough In Treating Basic CF Defect
In April, the CF Foundation announced an unprecedented milestone in its effort to treat the basic defect in cystic fibrosis. Historic results from an ongoing Phase 2 clinical trial of VX-770, a potential therapy being developed by Vertex Pharmaceuticals, Inc., suggest that the compound improves the function of the faulty CFTR protein. VX-770 is the result of a collaboration that began in 1998 with Vertex Pharmaceuticals and is the largest in the Foundation's history.

The interim data from the Phase 2a study performed in a subset of CF patients indicate that VX-770 improves lung function, sweat chloride levels and nasal potential difference. The first compound of its kind, VX-770 belongs to a category of compounds termed potentiators, which aim to improve the opening of the CFTR chloride channel that is defective in CF. It is being studied in patients who carry the G551D mutation.

"It's unprecedented for an investigational oral compound for the treatment of CF to have such a marked effect on multiple measures of CF disease activity."

Frank Accurso, M.D.
CF Center Director
University of Colorado


"The results from this trial are among the most important announcements in the history of the Foundation," said Robert J. Beall, Ph.D., president and CEO of the Foundation. "Although we're still early in the process, we have increased confidence that we can treat the basic defect of CF, and these data show that we are on the right path in our quest to cure this disease."

The study, the first part of two in the Phase 2a trial, tracked 20 CF patients, 16 of whom took VX-770 over a 14-day period. Part two of the trial, which is expected to enroll 16 patients, will begin in the second quarter of 2008. Additional studies will evaluate the longer-term safety and efficacy of the compound. The trial focused on a subset of patients with the G551D mutation of CF, approximately four percent of the CF patient population in the U.S. VX-770 may benefit those with other mutations that result in a malfunctioning CFTR protein; however, further study is necessary to determine how many CF patients could benefit from this compound.

did you know?
The CF Foundation's collaboration with Vertex Pharmaceuticals has been chosen as the subject of a Harvard University Business School case study on venture philanthropy to be used by business students at Harvard and across the world. A second Harvard case study of our decision-making process is also underway.
"Even at this early stage of clinical development, it's unprecedented for an investigational oral compound for the treatment of CF to have such a marked effect on multiple measures of CF disease activity," said Frank Accurso, M.D., director of the Cystic Fibrosis Center and professor of pediatrics at the University of Colorado School of Medicine in Denver. In fact, the Phase 2a trial of VX-770 is the first time that any potential therapy has improved the abnormal sweat chloride levels in a person with CF.

All the therapies currently on the market for CF address the symptoms of the disease, but now it appears that we can target the faulty CFTR protein and possibly restore its function. These early findings could have important implications for studies of other drugs in development.

In addition to VX-770, a second Vertex compound known as VX-809 began clinical testing early this year in healthy volunteers. Vertex plans to study the safety of VX-809 in people with CF by mid-2008. VX-809 belongs to a category of compounds known as correctors, which may allow the defective CF protein to move to its proper place in the cell, where it is then poised to move chloride out of the cell.

In 1998, the Foundation made an initial investment to use cutting-edge technology — known as high-throughput screening — to find compounds that address the core defect in CF. Since then, the Foundation has invested $76 million in the project, and the two organizations have closely collaborated to advance both VX-770 and VX-809.

If the clinical development of these compounds is successful, VX-770 and VX-809 could potentially add decades of life for those with CF.



"The project carried significant risk that would have dissuaded many companies and investors from moving forward," said Joshua Boger, Ph.D., president and CEO of Vertex Pharmaceuticals. "Today, however, with the Foundation's financial, scientific and clinical network support, we have been able to bring two novel CF compounds into development and are encouraged by these early results for VX-770."

If the clinical development of these compounds is successful, VX-770 and VX-809 could potentially add decades of life for those with CF.

Thursday, July 17, 2008

I'M SORRY BABY!

......As tears of failure roll down my cheeks as I look back on my life after writing the last post, I feel I must get it all out and write this to Lil' Chris. I may regret it later, and it may just be the pregnancy hormones, but I feel as though I need to tell him this. Even though he doesn't understand it now, he will some day when he reads it......(I'm sorry if this offends anybody in any way, that is not my intentions)

Dear precious Lil' Chris,
I love you soooooooo much!! I'm sooooooo sorry that I can't be there for you everyday by being a stay at home mommy, and I can't provide for you like I want to. If I could go back and change things I would. I definitely wouldn't ever change having you, but I would change so many other things. I would've picked a good paying career path and finished college so that money wouldn't be a problem. I would've encouraged your father to do the same, so that I could be a stay at home mom and keep you away from those pesty germs for as long as I could, that is, until you went to school.

But now that I can't go back in time, I feel as though I have let you down. I only wish that back then when I was making the decision not to finish college, that I would've thought of the future ...YOU!

But instead I was young and stupid. I let money and my parents divorce that was going on at that time interfere with my decision. Or maybe I used it as an excuse. My dad said that he would pay for me to finish college, but he had just gotten done paying for my sister's VERY expensive private college of 4 years. And then my mom sprung the words of divorce on him. I knew then, that I couldn't take any more money from him after all the money my mom was about to take from him. Plus, I looked to my older sister(D;), who didn't finish college and was making great money and was on a great career path. So, I thought..."Well, if she can do it, than I can too!" STUPID MISTAKE!! You have to get into the right company at the right time for that to happened, and I obviously never did.

So, hear we are today. Even though I know how important it is for me to protect you and keep you away from those pesty germs....I have no choice but to hand you over to complete strangers to care for you while we go work hard to make pennies. I'M SO SORRY BABY!! All we can do now, is to pray that something turns around for us....That an opportunity opens up.... That you don't catch too many colds meanwhile.

All we want for you, is to have the opportunity to live as long of a life as possible and be happy and as healthy as possible. I promise, no matter what, I will keep you away from those pesty germs as much as I can. Even if we have to live in a box so I can stay home with you and you don't have to be around other sick kids, we will make it work. I know I can't always keep you away from other sick kids, like when you start school, but I just feel as though it is my duty as your mother to keep you from those germs now, when I can.

I LOVE YOU MORE THAN WORDS CAN SAY! Please forgive me for the stupid mistakes I have made:(
Love,
Mommy

Coughing

Please pray for Lil' Chris. He has developed a lil' cough over the past few days. It was only once in a while, but this morning he has been coughing a lot. It is a dry cough. Please pray that it goes away quickly. I'll let you know if it continues or not.
M

PS. I just wanted to say THANK YOU faithful readers for all your GREAT advice on the experiences you had. It has helped tremendously!

Daniel's Mom,
I will let you know when I start feeling 100% again, so we can have another CF Mom meeting. It may be a little bit harder to set a date now, b/c my husband had to get a second job. So now, we really never see each other! I guess this is what we get for never finishing college. THE STUPIDEST MISTAKE WE EVER DID!! But, that's life. You live and learn! I should've listened to my father. We'll figure something out.

Tuesday, July 15, 2008

CF and Pregnancy Update

Hey Everybody,

Guess who has a couple of more teeth coming in? And guess who is cranky about it? Yup, my main lil' man:) The last few nights he hasn't gone down so easily and every now and then he'll wake up in the middle of the night crying. The 2 teeth that are coming in are one on each side of his top 2 teeth. I hope all his teeth come in quick now, so that we can start feeding him some real food that he can chew!

He is doing ok with the butter, but when my husband tried blending up some of our food for him, he did not like it! I guess we'll just keep trying. "If at first you don't succeed, try try again."

Last Thurs July 10th, I had my first ultrasound with our second baby. I was 11 weeks and now the due date is Jan 29th. They said everything looked great! I asked if their was any way to detect CF in an ultrasound, and she said that maybe towards the end of the pregnancy they may be able to tell by the way the bowels look. It doesn't always work though. I told her that we waited 9 months the first time, and we can wait 9 months this time too(actually there is only 7 months left now;) She gave me a prescription to help with the nausea, but it makes me sooooooo sleepy. I usually take it though, b/c it does help a little bit. I'll keep you posted.

M

Saturday, July 12, 2008

Butter...Yum

Well, I tried the butter in his food. He didn't seem to mind it. He probably didn't even notice. I put a little bit of butter into his baby food jar of Applesauce and Ham and then put it in the microwave for 30 seconds. It made it really, really hot!!! So I had to wait a little before giving it to him. Even then, I still had to blow on it. He kept laughing at me every time I blew on the spoonful. Then he started blowing too!! So cute!

I still wish that the dietitian would've explained it a little better. Like...

1. How much butter should I put in?
2. Do I put it in every feeding?
3. How long should I microwave it?
4. Should I use a certain type of butter?

I guess I'll have to ask her when we go for our visit at the end of the month.

We still haven't blended any food yet. Our blender broke a long time ago. All we have is a smoothie maker. Not sure if that's going to work. I guess we'll have to go shopping and get a blender. Until then, we'll just keep giving him butter in his food. We still haven't tried the cream yet. One of these days.
M
PS. Thanks Lori for the great advice about the butter! It worked perfectly except I cooked it too long:)

Wednesday, July 9, 2008

4th of July 2008

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The Things He Loves

We have an appointment to get the sweat test done, blood work done, see the speech therapist, and go for a regular clinic visit. Probably going to be a looooooong day! We still haven't heard back what the results of our blood work was(which genes we carry). Hopefully we will be able to find out at the visit at the end of the month.

Lil' Chris has been doing great! He loves to:
-follow us when we leave the room(crawls, not walking yet)
-stand
-say Dada(not Mama;(
-make noises with his mouth
-hand his diaper to us when we are ready to put it on him
-jump in his johnny jumper
-clap his hands
-run his fingers over his lips and make noise(his new trick;)
-take a bath
-go swimming
-play on his swing
-ride in the car
-babble
-play(esp. with Daddy;)
-fuss when we put his shirt on(???)
-grind his lil' teeth(I hate that!)
-cry as soon as we put him in his highchair until he gets food in his mouth
-crawl where he is not supposed to
-pull my hair(ouch!!!)
-touch what he is not supposed to(gotta love finger marks on the TV)
-take all his toys out of the toy chest and throw them all over the floor

My boy is getting so big! I can't believe he is 13 months already!
M

Tuesday, July 8, 2008

E-mail from a reader

Hi all! M sent me this lovely e-mail from one of our favorite readers and I thought it would be nice to share it with all of you. Here is a little background on her story... her daughter (C) is in her 20's & participating in a CF research program in Europe. The hope is that the results will end up benefiting all CF'ers. Charmaine had never heard about the vest before reading this blog & her daughter is now actively trying to see if she can get one. It would certainly make a big difference for her rather than having to continue doing manual CPT.
I hope you will join us in praying for C... that she will be able to get a vest, that the research program will go well, for her continuing health & of course for our friend Charmaine who is far from her daughter during the program. Here is the email she sent to us...

29 June 2008

Hullo again, its Me Charmaine - sorry havent been in touch but my system was down. Had lots to catch up with though.

Congratulations on being Preggies........its a gift as you well know and I just want to tell you that although C has CF, my youngest daughter T doesnt......The Lord will only give you what you can handle (although at times you might not think so....)

Just a quickie about the trial C is on - she had more scans done this week - got to see her lungs in 3D which she said was awesome - but also showed how much muck is still sitting there - these scans were done over a period of 5 hours on Thursday and then Friday morning she was back at the hospital for more scans and they showed her how the mucus is sitting in the stomache - this cannot be helped, its a natural thing to swallow unintentionally. She cannot really say much as they keep the findings for their records and will only let her know when the trial is completed - which by the way is 2 1/2 years to go.....

She is still discussing The Vest with the clinic she attends - she reckons they are a bit slow at times but C is a determined person and once she sets her mind on something it becomes a goal and she wont rest until she has achieved..........which sometimes has taken her a long time but eventually she has got what she wanted. Hows that for determination!!

Please if you hear from Aunt D, wish her well with her packing and moving - and I wish her the very best in settling in.

With fond regards
Charmaine.

Sunday, July 6, 2008

Food Update

Lil' Chris has been doing well. He didn't like any of those samples that the dietitian gave us. So, I called her and told her and she said to go ahead and get more formula and we'll figure something out eventually. She did say that she wants us to put butter or cream in his baby food to get more calories. Sounds gross to me, but we'll see I guess. I'm not really sure how to do it though. Do I melt it, or should I start buying the margarine so it is softer????? I usually buy the sticks and keep them in the fridge. She wasn't very specific. I may have to call her again to ask. I hate to be a pain though.

She also said she wants us to start putting the food we eat into a blender and feed it to him, since he won't eat the table food normally and because he only has 4 teeth. When we try to give him table food, he'll take it, but then keep it in his mouth for awhile until he gags on it or throws it up or spits it out. Weird???? Sometimes he will take some soft foods just fine though. So, we'll see how the butter thing goes and the blender thing goes. I'll let you know.

As for the pregnancy, I'm starting to feel a little bit better each day. THANK YOU LORD!!

Hope you have a nice weekend,
M

PS. Thank you honey for taking care of Lil' Chris and the house and food shopping and everything while I wasn't feeling well! You are the BEST HUSBAND EVER!!! I LOVE YOU!!!!!!!!

Friday, July 4, 2008

Vacation

It was a looooong trip, but well worth it! In the 15 hour car ride, Lil' Chris learned how to clap his hands! YEA!! Now he can't stop. Every time we say "Yea", he claps. It's so cute. His forth tooth also started to come in more that weekend. Now he has 2 on top and 2 on bottom.

I hope my Aunts and Uncle and Gram don't mind me putting their pictures on line. D said she warned you :) LOL



HOPE YOU HAVE A GREAT 4TH OF JULY!!
M

HAPPY 4TH OF JULY!


I don't know about all of you but the 4th of July is a big holiday for my family. We get together every year at my Mother & Father in-law's house for a pool party followed by the township parade & fireworks. It's fun to have all the cousins together for the day & they love going to the parade together. The kids look forward to it all year & truthfully....so do I! =)
I feel very privileged to have grown up in America...to be raising my kids in such a wonderful country. It is my honor to stand & salute our flag & our veterens as they walk by us in the parade. It gives me a great opportunity to teach my children the importance of being thankful for the freedom they enjoy & for the men & women who serve & protect our country. I hope they always remember that lesson. Our freedom is not guaranteed. It was fought for & won & now it is fought for & protected. I pray for our Armed Forces & I am thankful for the job they are doing that has protected us from any further attacks since 9/11. God Bless them for their sacrifice that is so easy to take for granted in our easy life here in the US.
Thank you for your service men & women of our Armed Forces! It is because of you & all that have gone before you that the United States is the greatest nation in the world.
God Bless the USA!!

Thursday, July 3, 2008

Shots Update

I'll make this brief since I'm still not feeling very well. I have to say a special THANKS to my wonderful brother- in- law who fixed our laptop over the phone! THANKS YOU SO MUCH S!!!

Lil' Chris got his 1 year shots yesterday and his finger prick done. He was such a champ! He didn't cry at all when she pricked his finger! He just sat there the whole time playing with the paper on the table while she kept squeezing the blood out of his lil' finger to get a sample. Now, the shots on the other hand.... that was a different story! He of course cried, but only for a couple of minutes. He is such a good baby:)

They said that with these shots, he may get sick over the next couple of weeks. Hopefully we don't run into that problem. Although he did throw up a few hours after getting the shots. We are not sure if it was from the shots or from the samples of different things that the dietitian gave us to try. My husband tried to give him 3 different kinds yesterday, but he wouldn't even barely taste them. I can't blame him after what he went through with trying the PediaSure. Hopefully he'll like one of the ones I'm going to make him try today. Here is the list of things we got to try...

Bright Beginnings Soy Pediatric Drink : Vanilla
Nutren Junior Fiber by Nestle Nutrition : Vanilla
Ele Care (powder) : Vanilla
Nutricia E028 Splash : Orange Pineapple
Just For Kids 1.5 Cal : French Vanilla

Has anybody used any of these before? I've never heard of them. Let me know what you thought of them or what you used after formula.
M

Wednesday, July 2, 2008

Lil Chris Update

Good morning!

I talked to M on the phone for a little while yesterday & she said Lil Chris is doing better! Yesterday was the first day he was back to himself since his last episode with the Pedia Sure. Unfortunately the dietician wasn't able to bring her the samples of Pedia Sure alternatives on Sunday though so they are just continuing on with his formula. Hopefully he won't have the same reaction to the other supplements as well.

I asked M how she's been feeling & she said she's counting down the weeks to the end of her first trimester. =) I remember feeling like that too! It always felt like a fog lifted from my brain after the 12th week. I hope it works out that way for her & doesn't linger on like it did with Lil Chris. Her experience has been different this time though, no throwing up all day & she can actually eat more than just slurpies & crackers so who knows maybe it'll be a girl! I hope so! I have bins & bins & bins of girl clothes that I've been saving to pass on to my sisters. :P

M & I were talking about names yesterday too. She's not sure what she wants to do yet but she likes traditional names. We won't know what she's having for another 10 weeks or so but we were discussing girl names. I've got a fun idea! Why don't you give us your suggestions for both boy & girl names & I'll list the top 3 of each in a future post!

Have a great day!