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.

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

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

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

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

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

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