Our 2015 CF Commercial that plays on MCTV

Tuesday, September 30, 2008

Park Pics

I forgot I had downloaded these pics awhile ago, but forgot to post them. I only posted the videos of him walking at the park before, click here to see those again.

Sunday, September 28, 2008

CF Mom Meeting Update

Ok, everything is set for our CF Mom meeting! We are meeting at 6:30 on Tues Oct 7th. There are only 2 moms I'm not sure are coming or not yet. But so far it's going to be me, Daniel's mom, Julie, and Alma. Hopefully Catherine and Alma's friend can make it too:)

At the last CF Mom meeting, it was me, Daniel's mom, and Catherine. So this time we will be meeting Julie and Alma for the first time! I can't wait!!

I'll let you know how it goes and what I learn,
M

Thursday, September 25, 2008

Fascination with the Gate & Climbing the Stairs!

Lil' Chris loves the gate! He loves checking it out and inspecting it. He now can climb the stairs, but before he goes up, he first must close the gate=) Too cute!
M



Saturday, September 20, 2008

Fun Day on Daddy's Birthday

On Daddy's birthday, we had lots of fun! We went to a cool farm and walked thru 2 neat corn mazes! Mommy had lots of fun directing us thru the maze. It was so relaxing that I just fell asleep being pushed around. Then from what I hear, Daddy and Mommy had lots of fun while I was sleeping. They played games and Daddy went thru the hay obstacle course and down the big slide into the corn(his favorite:) Then I had to get in on the action. I liked the big slide into the corn too, but it was a little hard walking in all that corn. We also had fun milking Bessy the Cow and seeing all the farm animals! We had a GREAT time and can't wait to go back next year!

After the farm, we went to the town Fair. It was a lot of fun going on the rides. My favorite was the BIG slide(I think it was Daddy's favorite too)!

Well, I hope you enjoy my pictures! Happy Birthday Daddy! I hope you had a FUN DAY!!
Love,
Lil' Chris







Wednesday, September 17, 2008

Scholorship Contest for Students With CF

Below is an email I received from a reader. I think it's a great idea to get involved. Even though my child isn't in school yet, he will be someday:) So if you have time today, take a look and vote.
M

Hi, I've enjoyed reading your blog, A Cure 4 Lil’ Chris, and saw you focus on family life and cystic fibrosis. I thought that you and your readers would find this scholarship contest for students with cystic fibrosis interesting: www.SolvayCARESScholarship.com
Each scholarship winner has received an initial $2,500 for entering their artwork and essays to help finance post-secondary education. Now you and your readers can vote online for your favorite entry and help one scholarship winner earn $10,000. Voting started September 15 and ends October 15, click here to vote. This scholarship is awarded annually.
Any way you could help spread the word about this program and encourage voting is most appreciated!
If you have any questions or would like further information, please don't hesitate to get in touch with me!
Kind regards,
Renee Barone

Sunday, September 14, 2008

Our First Trip to the Pediatrician

For the first part of our story, click these...
1. The Beginning of it All
2. The Nagging Begins
3. The Nagging Continued
4. The Phone Call
5. Our Options
6. The News
7. The Best News Ever!
8. The Big Question
9. Sharing the Good News
10. It's Baby Time!!
11. The Birth Part 1
12. The Birth Part 2: Happy Birthday Lil' Chris!!

Last time, I left off when Lil' Chris was born, so here are the first couple of weeks following...

The whole time we were in the hospital after he was born, they kept saying he was doing great! He was eating and peeing and pooping like any other baby. They told us that one sign of CF is when they don't poop and then problems arise, but he had no problem with that. So of course we only thought the best, thinking and hoping and praying that he didn't have CF.

When we finally went home, he was so peaceful and quiet. He was even quiet when he was born, he barely cried! A week went by like nothing was wrong. Then we got a phone call saying that they only found one mutation of the CF gene. Which meant he was only a carrier. So of course we were relieved, but they still wanted us to make an appointment with the CF Clinic for some reason. So the earliest appointment I could get was in another 2 weeks.

Then another week went by. I started to notice that he was hungry A LOT and pooping A LOT! It seemed as though he would still be hungry as soon as I just got done feeding him! And then when I was putting him in the outfit that he wore home from the hospital, it seemed a lot bigger on him than it did 2 weeks ago. They always say that babies tend to lose weight, so I thought maybe that was why. Then we got another phone call saying that the lab messed up the first time. They actually found 2 mutations. But they wouldn't tell us anything more than that. They just said to keep the appointment we had scheduled at the CF Clinic and they would explain everything there. So, we still weren't sure if he had CF or not. We hadn't done a lot of research on it yet, b/c we wanted to believe that there was nothing wrong with our baby.

The next day, we went to the pediatrician for his 2 week check up. The nurse weighed him and everything, and then we waited for the doctor to come in. When she did, she asked us lots of questions. I told her how he is always hungry and then she asked how many times a day he was pooping. We said like 10. The look on her face....I knew something was wrong. She practically ran out the door, leaving us to wonder what was wrong. Then she flew back in asking us if we could go to the CF Clinic in about an hour. Chris and I looked at each other like "Why? What's wrong with our baby, he seems fine?" We said "I guess", but it takes about an hour to get there, so we had to go straight from there. I asked her what the problem was, and she said that he shouldn't be pooping that many times a day. Of course as new parents, we had no clue. We just thought all babies pooped a lot! She also said that he had lost over a pound in weight since he was born, which was also a sign of CF. I came right out and asked her before we left, if she thought he had CF, she didn't really give an answer...which scared the crap out of us! Before we walked out, she looked at us and said, "I can't believe how well you guys are taking this!" We just looked at each other like "Taking what? You haven't told us anything! We don't know what's going on!"

So, we rushed out of there and off to the hospital we went. We didn't know what to think. I just remember Chris calling his family and me calling my sister D and telling her to pray and to call my dad and tell him to pray that nothing was wrong and that he doesn't have CF. But deep down, Chris and I knew something must be wrong if the doctor was panicking and made us rush to the hospital.

I think we were just both numb and didn't say much the whole loooooong ride there.
M

Bad Day/Night

Yesterday Lil' Chris wasn't feeling like himself. For breakfast, he threw up his yogurt, then he wouldn't drink any of his bottle. At least he ate his food first before he threw up. Then for lunch, we met Daddy for Pizza. We used our handy dandy squeezable applesauce for his enzymes, then he snacked quit a bit on some pizza. He seemed to really enjoy it. Then later, he ate his food and drank his whole bottle. I was glad, since he didn't drink his morning one. But later that night, as soon as I gave him his enzymes, he threw up. I think it was the pizza???, but I'm not sure though. It wasn't much, so I kept trying to give him his enzymes so he could eat his dinner and then go to bed. I finally was able to get it into him and then he ate his food and he took his antibiotic. By this time, I thought he was feeling better, b/c he ate his food pretty quick. Boy was I wrong! I gave him some pieces of string cheese that he didn't finish at lunch. He ate a couple of pieces, and then it happened! It just came pouring out of him! It was even coming out of his nose!! He was flipping out! When he was little, this used to happen all the time, but it has been awhile. I think he was flipping out mainly b/c it stung not only his throat, but his nose as well. Even the enzymes were coming out of his nose. Sorry, I know this is gross:(

For some reason, I'm not the type of person to panic when stuff like this happens. I don't know why, I would think that I would be. Maybe it's b/c he used to do it all the time. So, I cleaned him up as best I could. He wouldn't let me touch his nose, but I had to wipe it. Then I took him upstairs, grabbed a towel(I know from experience this was not over) and sat with him on the rocker. I was hoping he would just go to sleep, but he just sat there whimpering. I was waiting for more to come up while I was trying to soothe him. Then as we sat there with the towel over him to catch the throw up, he turned toward me moving the towel almost out of his way, and then it all suddenly came up right on me! That's ok, I'm used to that too. I don't care as long as it makes him feel better. Then before I could even stand up, he threw up again! It all happened so quick!

Finally, I was able to get him onto the changing table. I had to take a second and wipe myself up, b/c I was dripping on the rug. Then I changed him and he seemed to be starting to feel better! I was able to get him to laugh and play with some books while I finished cleaning myself up and the floor and threw everything in the wash. I still knew that this wasn't the end. So I did like his Daddy always does, lined the crip with every blanket we had. Luckily Nancy made us a bunch of cool receiving blankets, so I grabbed all of those and covered the mattress and the bumper. Then I put him down, b/c I knew he was tired. He went to sleep pretty quick. It took a lot out of him.

A little bit later, my husband got home from work. When we went to go check on him, he was sound asleep, but there was throw up in the crib. Not a lot, just a little bit. I was surprised that he didn't even cry when he threw it up. He usually always does! So, we turned the light on and he woke up. I grabbed him and cleaned him up, and my husband changed the one blanket that he threw up on. He was glad that I put those blankets down, so he wouldn't have to change the crib sheets(they are a pain to change now that the crib is so low to the ground).

After that, we put him down and didn't hear a peep from him the rest of the night! So it didn't end up being one of his worst nights. It wasn't so bad after all. This morning he seemed fine! He ate all his breakfast and bottle! He had lots of fun playing in the bathtub too:)

I'll let you know if anything else happens,
M

Saturday, September 13, 2008

MediSimpleShoppe.com

Above is the whole sample kit: Applesauce, 2 packs of olive oil, pamphlet, and a card with a coupon code.
Below is just the Squeezable Applesauce Pouch.
Here is something GREAT for us CF Moms that I'm going to pass on that Daniel's mom shared with me(Thanks Daniel's Mom:)...
If you still feed your CF child enzymes with applesauce, then you have to check out this website(Medisimpleshoppe.com) and try a sample of the Squeezable Applesauce Pouch. It is great for travel. It is a pouch of applesauce with a screw on top so you can throw it in your purse and it won't spill!

If you go to the site, click on Blog at the top to find out how to get a free sample. Or just email them at healthy@medisimpleshoppe.com and include your name and mailing address. I emailed them to get a free sample, b/c I wasn't sure if Lil' Chris was going to like the taste or not. Sometimes when we go out to eat, we order applesauce so we can give him his enzymes, but he doesn't like certain applesauce's. So when we got the sample in the mail, we tried it and he really liked it! So then I went back to the site and ordered a case of it. (Tip: if you order a case, you won't get charged for shipping). A case is 12 packs of 4 applesauce's, so you get a total of 48 pouches. Also, you get it cheaper if you order it by the case. In the sample they sent me, they sent me a card with a coupon code: medisimple. So try it if you order, it may work for you too and you'll get $5 off!

They also sent me 2 samples of olive oil packet, which they said is great for adding fat calories to any food anywhere. I haven't tried them yet. Not really sure about it. I've never heard of doing that before. Has anyone else? It's probably a good idea.

To learn more about the story of how the website came about, click on the FAQ's on the website, or click here. It tells the story about a mother with a child with a medical condition and just wanted to make life simpler. Also, if you have any other great ideas, just email it to them. My husband said that they should make the pouch with a spoon attached to the end of it, so when you squeeze it, the applesauce goes right onto the attached spoon! He's so smart:) I'm going to email that idea to them, b/c it seems like they are open to any great ideas if you read the FAQ's. I'm also going to email them to see if I can somehow get a bunch of samples or pamphlets to hand out at our Great Strides Walk next summer. Hopefully they go for it, b/c I'd hate for any CF moms to miss out on this.

Even if your child doesn't have CF, it is a great healthy snack on the go! So, check out the site, they have lots of convenient items for: Travel, Nutrition, Sterilization, Organization, Easy Breathing, and much more! They even have a spot to order gift certificates if you know someone who might benefit from it...hint, hint...just kidding...although, I have been researching about the salt air purifier and how good it is for CFers. I'll have to save up for that one. I've read so many things that say that those CFers who live near the Ocean breath easier and live longer b/c of the salty air. We've thought of moving just for that reason, but then it is hotter there, which would make him sweat more, which would make him lose more salt, b/c CFers lose more salt when they sweat. So this salt air purifier is like living by the Ocean without the hot air:) So smart!
All together, I ordered one case of applesauce, the medicine spoon with a cap for traveling, the medicine spoon with a brush(they are hard to clean sometimes), and the On The Go Surface Cleaner(I haven't tried it yet). Plus, I put my "medisimple" coupon code in and got $5 off. So, my total was $39.52(no shipping charges b/c I ordered a case, and no tax charges either for some reason). Another tip I'll give you, just like Daniel's mom gave me...the applesauce does expire, so don't over order(I just got my case and they don't expire until June of '09).
Let me know if you get the sample and like it.
M

Great News for our CF Mom Meetings!

Guess what? The other day I got a phone call out of the blue from another CF Mom ! She, I think, got my number from our CF Clinic. The social worker there told me she was going to let other CF families in my area know that we have CF Mom meetings to help support one another. Also, I filled out some paperwork once saying that I would love to be a mentor to new CF families, since Daniel's mom has been a great mentor to me:) So, I'm guessing that is how she got my number.

I'm so excited to meet her! Her name is Alma and she has a 2 1/2 year old boy with CF named Jack. They live in the next town over, which isn't very far at all. I told her I was going to try to get everyone together for a CF Mom meeting soon, and she seemed very excited to join our group! She told me that one of her neighbors has an older CF child. She asked if she could call her to see if she wanted to come to the meeting too. I said "Absolutely!!" I'm not sure how much older her child is, but she will probably be able to relate to Julie, a CF mom with 3 CF girls, the oldest is 13 and she has twins who will be 8 on Wednesday.

So far, I've talked to almost all the CF Moms. I'm waiting for one to call me back. The date right now looks to be October 7th at 6pm. Not sure where yet. I want to make sure everyone can make it on this date first, then we'll decide where. We may not be able to meet at the same place as last time, b/c there might be too many of us...6 CF Moms...isn't that GREAT!!

I'll keep you posted,
M

Friday, September 12, 2008

Article of 5yr old CFer

For those who read my blog and not Nate and Tricia's blog, I thought I would share with you what he posted. Click here to read a great article about a lil' 5 year old girl with CF. Her family has started their own CF Great Strides Walk in their town. It is this Saturday. It kinda reminded me of us, b/c we are going to start a walk here in our town next summer.

Well, I hope you read the article, it has a lot of great info in there and explains a lot.

I hope they have a GREAT Walk this Saturday along with Nate and Tricia who's walk is this Saturday as well.
M

Thursday, September 11, 2008

Vacation Pics

Here are some old pics I forgot to post. They are from our Vacation to the Beach, not actually at the beach, but on our way to the beach and at the place we stayed.
He was such a good boy in the car. He loved playing with his toys and blankets.
In some of the car pics, you can see the blue bag to the right of him. That is the bag that holds his Vest. It is so convenient to have that bag! It's even on wheels like luggage!
We stayed in a trailer on a campground. You can see what a germ-a-phobe we are in some of the pics. We brought extra sheets to cover the chair and couch. We even cut open some trash bags to cover the floor around his pack-n-play so that when he threw his toys out, they wouldn't get all dirty and germy. I know, we're weird. LOL!
M

Tuesday, September 9, 2008

Update on Janna and Chloe

I was wondering how Susanna's(a blog reader) CF girls were doing, so I emailed her and she emailed back. She said I could post it. I just wanted everyone to see how well they are doing. I think she's doing a GREAT job with the girls, especially now that she has a total of 4 kids including a 2 month old! Keep up the good work Susanna, and keep us updated:)
M

Hello Dear M,
I'm sorry it's been so long since I've been in contact. It seems that I rarely am able to spend much time on the computer. We are doing ok.The girls had their CF appointment last Friday. Janna's weigh in was great ~30.5 lbs~ put her at the 45th percentile for her BMI!!! Her highest ever! She will turn 3 on Oct. 14th. Chloe's weight was only 20lbs 13 ozs. She gained good height, but she didn't gain weight like she should have. This was a real switch, because it's always been Chloe doing better than Janna until this time. Chloe's appetite is great!!She's eating EVERYTHING (even cabbage!!:-), so we feel that it's more of an absorption issue. So...we are switching her enzymes from Ultrase to Creon and maxing out her doses per meal/day. The doctor called this morning with the results of their throat cultures but I missed his call.On the message he said not to worry, but I also know that it means something is on the culture or the nurse would've just called and said it was ok. Overall though, it seems they are doing very very good.
You asked about the blood work etc. after birth. For my last three,my doctor ordered the blood work right from delivery. They tested specifically for the Delta F508 gene right along with the other normal blood work. The results will come back either that there is one, two, or none of that gene found. If one is found...a carrier; two found is CF;or none...not even a carrier. The results were available on the hospital system (where my doctor had access to see) within 2-4 days after birth.My pregnancy doctor is the one that has called me with the results,that's not 'normal procedure' for OB, but if you are very comfortable with your doctor he/she would probably do the same for you.
Baby Levi is doing good too. He goes for his 2 month visit next Monday. I'm hoping for 11.5 lbs! It is Soo nice not to have to give enzymes every time he wants to eat! Nathaniel is being quite a good big brother to all to them (most of the time:-). He absolutely loves holding Levi. My husband has been very busy. They are already gearing up for their next deployment, so he has a lot of responsibilities. He also went before the promotion board last week and out of a possible 150 points to be given, he received 149!!! I was very proud:-) Now tomorrow he is being sent to the board again for "Soldier of the Month"! I'm excited for him, but he thinks I'm being a little overly dramatic:-)
I really enjoy checking out your blog every chance I get. I'm so glad you are expecting a little girl!! That's awesome. Hope all continues to go well for you.
Sincerely~~ Susanna

Saturday, September 6, 2008

Throat Culture Result



I finally got the throat culture result back in the mail. The bacteria that he grew is called Capnocytophaga species. They said he grew this before, but I don't remember them telling me about the dog saliva part before;(
Above is the letter we get in the mail after each throat culture. It has a list of all different types of bacterias, and they just check the box next to the one that he grew. The clinic also calls us, usually, as soon as they get the results back. That way we know quicker, but they still send this letter out a few days later. Our CF clinic is great!! We are very fortunate to have such a great place with friendly people who know what they are doing to take care of Lil' Chris!
M

Wednesday, September 3, 2008

CF Clinic Visit

After our ultrasound appointment, we went to the CF clinic like they had asked us to do. He weighs 24 lbs and 13 oz, and is 31 1/2 inches long.

The doctor came in and checked him out and asked a lot of questions about his cough. We told him that it is going away, but sometimes we can still hear it. We also told him that he is not wheezing or short of breath or anything like that. He never has been and hopefully never will. I think that is why he hasn't been on any nebulizer treatments yet. He listed to his chest and back, and said that his lungs are CLEAR! YEA!!

He also talked about his throat culture results. He asked us if we had a dog. We kinda looked at him funny and said "No...why?" He said that the bacteria that he was growing in his lungs was a bacteria that they usually find in dogs saliva. We looked at each other and said "That's weird and gross." But the doctor said that is was nothing to worry about and that it is something that does not need to be treated. Still kinda confused...we left it at that. I'm still not sure what the name of the bacteria is exactly. I'll get a paper in the mail soon that will tell me.

The doctor said that he is still gaining weight like he is supposed to and that was a good sign. I was relieved to hear that, b/c we have been trying to switch over to regular food instead of baby food. But it seem like he wasn't eating as much. He doesn't drink as much of his bottles as he used to. I even started making 6 oz bottles instead of 8 oz bottles, b/c he kept wasting them. But it must all be balancing out I guess! We'll see when we go for our next appointment on Nov 5th.

The doctor said to just continue the Vest as normal (20 minutes, 2 times a day) and to continue the Sulfatrim until the 21 days are up. I was glad to find out that both Daniel and Ashley(our CF friends) have both been on Sulfatrim. It must be a good one:) He still hates the taste, but we found out that it's not so bad when both of us are here to give it to him. One holds his arms down and opens his mouth, while the other puts it in his mouth. When we are by ourselves trying to give it to him, like we are most of the time b/c we work opposites of each other, well....that's another story:( We'll get there though. Actually, I think he just doesn't like it b/c it is pink! He sees that pink coming and wants nothing to do with it. He Dadda's boy, that's for sure!
M

IT'S A GIRL!!

Isn't she beautiful?
Now comes the hard part...picking a name:0
They said her weight and everything looked normal for 19 weeks, that doesn't mean she doesn't have CF. We won't find that out until a few days after she is born probably. There is a 1 in 4 chance she could have CF and a 1 in 2 chance she will be a carrier.
She was sooooo active the whole time during the ultrasound! (I have been feeling her move since last week). In the first few pics we got, her head was on the right side(like the pic above), and halfway through, she flipped and her head was on the left side. Too funny!!
The estimated due date is still 1/29/09.
M

Tuesday, September 2, 2008

Big Day Tomorrow!!

Tomorrow we have our ultrasound appointment to find out if we are having a boy or a girl! YEA!! We can't wait! I'll let you know.

Also, I called the CF clinic today to find out what the throat culture result was. He grew a bacteria, but it is not a CF bacteria. I think she said it is a mouth bacteria, whatever that means. He actually grew this once before. It is something that does not need to be treated, I believe. But later, they called back saying that the doctor wants us to come in tomorrow. If it's not a CF bacteria, I don't know why they want us to come in so soon, but we'll do as they say. Luckily I had requested the day off from work. Hopefully everything is ok. His cough has gotten a little bit better since being on the Sulfatrim. Maybe they will take him off of it. That would be great, since it is sooooooooo hard to force down his throat. He hates the taste of it. We have tried every way possible to give it to him, but nothing works the second time. He is too smart and catches on too fast. Sometimes I feel like we end up spilling more than what he gets in his mouth. We'll see tomorrow what they say.
M