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

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

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

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

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

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

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