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Thursday, May 29, 2008

The Birth Part 1

For the first part of this 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!!

So I'm in labor, the hospital doors are locked........I look at my husband and said "Oh no! They're closed, we're too early!" He looked at me and said "They don't close!" Then we both looked inside and the lady behind the desk saw us and buzzed us in. I felt pretty stupid after that. The lady told us that they have the maternity ward on lock down, b/c some girl who just had a baby thought that her ex-boyfriend was going to try to come and take her baby or something. Chris and I exchanged a look that was like "Oh Great!" But nothing ever happened, it was just a pain when Chris would try to get back in, after running to the car for me every now and then. Thanks Honey:)

So, we got all checked in and finally got to our room at about 7:30 or so. After I put my gown on, they checked me and I was already 4 cm dilated. They asked if I wanted an epidural right now, and I said it wasn't that bad and I could wait. We had a really nice nurse who stayed with us pretty much the whole time. She of course had to ask a million question! I or Chris would answer her, or she would wait until a contraction was done, then I would answer her. She was pretty nice and patient about it. I could've talked through the pain, b/c like I said, they weren't really that painful, but I decided she could wait. This was MY day and I could do whatever I wanted!! LOL : )

By the time she finished all the paperwork and hooking me all up to machines, it was time to check me again. It was about 11:00am and I was 7cm this time. She again asked if I wanted an epidural yet. I still was going back and forth about having it, since I could deal with the pain. I've had lots of stomach pains my whole life, so that's why these labor pains didn't seem that bad to me I guess:). The nurse was so shocked that I didn't once make a sound or really even show my pain that much. I would just breathe through the pain slowly. She said that I was her quietest and best patient ever! That was nice of her to say. They probably tell everyone that though;)

Once my doctor came in to check on me, she said that it was her anniversary today and that she had plans that night and that she had to leave between 5 and 6pm. So I of course was like "Oh Great!" I really didn't want any other doctor to deliver my baby, b/c she is really gentle and great. Plus she knows our whole situation with the possibility of CF. So, I decided to go ahead with the epidural to speed things up so I would deliver before my doctor had to leave.

CF Mom Meeting Went Great!

Our CF Mom meeting went GREAT! We had a lot of fun! There were 3 of us...Me, Daniel's Mom, and Catherine. It was Catherine and Daniel's Mom's first time meeting. Daniel's mom and I had lots of questions for Catherine since her CF daughter is 5 now. She was very helpful in telling us everything we wanted to know.

One thing that we all found strange, was that Catherine's CF doctor told her that the enzymes(pills that the kids take with every meal and snack to help digest the food) only work for 20 minutes. Daniel's mom and I go to the same CF clinic, and they told us that the enzymes work up to 1 hour. Now, I know all CF clinics and doctors are different, but this is kinda BIG! It's the same Creon 5,10, or 20 that all our kids are taking. Shouldn't we know if they only work for 20 minutes? Or shouldn't Catherine know if she has a much bigger time span to feed her daughter as much as she can? Something isn't right. Catherine is going to ask her doctor and I am going to ask our doctor on Wed the 4th when we go for our annual visit. Maybe somebody will give us a good reason as to why the clinics are saying different things on such a big matter.

Something good though, is that Catherine was telling us about how they are close to finding a cure for a certain gene(which none of our kids have unfortunately). But if they find a cure for one type of gene, they'll find a cure for more if not all:) I was telling them that Julie(another CF mom that I know that couldn't make it to the meeting) told me that her CF doctor said that he is really really close to the cure=) I asked her if it would just be a cure for new CF babies born today, or if it would be for all CFers. She said it would be for all CFers, which is GREAT NEWS!!! Catherine told us that her doctor(which they go to the same clinic, but have diff. doctors) said the same thing, but it would cost around $100,000 a year!! WOW!! That's A LOT of money!! So, who knows what's going to happen. I'll pay whatever I have to if it means Lil' Chris will have a longer, healthier, more normal life.

All in all, we had a blast and ended up talking until 9:15pm. I hope we get to do it again real soon. I'll let you know.
M

Tuesday, May 27, 2008

CF Mom Meeting

Our first CF Mom meeting is tomorrow night! YEA!! I can't wait! It's going to be me, Daniel's Mom, and Catherine who lives right up the road from me. I met her at my work when we did the Jeans for Genes day. So, this will be nice to get to talk to her a little bit more. She has a 4 year old girl with CF and a younger girl without CF. As you might remember, Daniel is the youngest out of 4, and he is the only one with CF. He is 2 1/2. And I think you all know my Lil' Chris:) He will be 1 in 9 days! YEA!!

The other CF Mom that I know can't make it, b/c she had plans already. She said she'll try to come if she gets done early. She has a 12 year old girl with CF, and twin girls with CF that are 7 years old. I usually get a lot of good info from her when I talk to her on the phone. Hopefully she can make it and share all her info with the rest of the CF Moms. If not, there is always next time:)

Catherine said she is going to try to get another CF Mom here in town to join us as well. So, that will be nice to meet another CF Mom. She has a girl(I think)in the 8th grade(I think). I'll get all the details tomorrow night. I'll try to fill you in as best I can.

I wish all you CF Moms could be here for the meeting:( But at least we have this blog to talk to each other and keep each other updated on how our kids are doing:)
M

First Crawling Videos!!

Here are some videos of Lil' Chris crawling. He loves to follow us when we walk out of the room now, it is so cute! I know what you're thinking..."It won't be cute for long!!!" I'm just enjoying every minute with him right now! I can't take my eyes off of him sometimes! He's just too stinkin CUTE!! Gotta love him:)

He was crawling around, so I backed him up and got the camera to video tape, and what did he do? He headed straight for the stairs! That's the first time he has even gone close to the stairs! Amazing, I know! I couldn't stop video taping, b/c it was so cute. He was trying to get his little leg up, but never made it. Soon enough, soon enough:(

He usually crawls right to the curtains, not sure what the fascination is with the curtains, but he loves them. He's been listening pretty good though. When he pulls on the curtain, we say "NO" and he usually jumps and then stops and moves on(usually to the next curtain though:( LOL

It's so funny how he has to stop and look up at me every now and then....

He just couldn't get up that first step no matter how hard he tried....

He got lazy and did the army crawl again, heading straight for the curtains....

He almost made it past the curtain without touching it, but then changed his mind....

Just a side note, my husband added some more pics at the bottom of the My Lil' Star post.
Hope you enjoyed the videos,
M

Monday, May 26, 2008

My Lil' Star

This weekend was GREAT!! Lil' Chris started pulling himself up to stand, EVEN in his CRIB! So, Daddy had to move the mattress down really low so he won't hurt himself. It's looks so funny seeing it low now;)

He also started crawling on all 4's more!! It was too dark in the living room to get video. But I'll try to get video of it soon, b/c it is sooo cute! He still gets lazy at times and does the army crawl. You would think it would be opposite! I think the army crawl would take more work, than crawling on all 4's!

He is also eating a lot more now! He loves Mommy and Daddy's yogurts! He also LOVES his cheddar crackers in the shapes of Sesame Street characters. He can't get enough of them! He still gets 3-4 bottles a day, but now he eats 2-3 jars of baby food with it(and some crackers:) His annual cf clinic visit is next Wednesday on the 4th. Hopefully they will tell us that he is big enough for his big boy car seat!!

Let me see, what else did we find out this weekend........oh yeah! He hates the grass in his toes. We went to the park and put his feet in the grass for the first time, and he didn't mind it the first time(see video below), but after that, he just kept crying and crying until one of us picked him up. He especially didn't like sitting in it.

Well, I guess that's it for now. Enjoy the pics and video=)



M

Saturday, May 24, 2008

It's Baby Time!!

For the first part of this 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

Sorry it's been so long since I've continued our story, but here we go...

I'm going to skip ahead 9 months, b/c I'm sure you don't want to hear about how I lost 10 lbs in my first 3 months of pregnancy from throwing up pretty much everything, and then continued throwing up off and on throughout the rest of the 9 months.

Well, on Wednesday, June 6th 2007, (which my husband and I both happen to have off work that day;)I awoke at 5:30am and started to get a little cramping. I didn't really think anything of it, b/c my due date wasn't for another week! So I tried to go back to sleep, but I couldn't. So I figured I'd go pee for the 5th time(nothing new) and try to go back to sleep. But instead of peeing(sorry, I know this is gross;), my water broke! Thankfully it didn't happen in bed or on my way to the bathroom. Although it would have been funny watching my husband clean it up:) LOL

I didn't know what to do, b/c I didn't want to wake my husband up. It was his day off, the only time he gets to sleep in. Somehow, it was like he knew what was going on. He made the kissing sound we always do to see if the other is awake to talk or to see where they are in the house and stuff. Once he did that, I was so relieved. I wanted to see his face when I told him, but I just blurted it out..."I think my water just broke!!" He hopped up and said "For real?" I said "I think this is it! Good thing we both have off today, b/c we are having a baby today!!"

So he started asking me a million questions, and then started getting ready to go to the hospital. Like I've said before, good thing I'm a lot like my Dad. I had EVERYTHING all ready to go...my bags, the car seat, my checkoff list, etc.(see just like my Dad). Only thing I had to do was take a shower and get dressed. I was getting contractions about 3-4 min apart, but they weren't that bad. I figured it would take all day before I delivered and the nurses probably wouldn't let me eat anything, so I asked Chris to go get me something for breakfast so I would at least have something in my stomach to last me all day. BIG MISTAKE!!! I barely ate it, and it made me throw up about 3 or 4 times at the hospital. Talk about dumbest move ever! How embarrassing too. Oh well, now we know for next time:)

So, by the time I got out of the shower, the contractions were about 2-3 min apart. They still weren't that bad to me, don't get me wrong, they were definitely painful. I always thought that it would be really really painful. I got dressed and then I kinda wanted to wait a little before leaving, b/c they weren't that bad. But Chris said "Let's just go. They are coming really close together." So, I gave in after a few minutes and we left. On the way there, I was saying "The bumps it the road ARE kind of painful." I always wondered about that b/c you always see it in the movies:) Luckily the hospital was only 2 miles away.

As we were walking in the front doors, I had to wait for my husband to get off the phone(of course) before we entered the maternity ward (he is ALWAYS on the phone!) I was kinda mad since I was the one in labor and in PAIN!!! Luckily he didn't take too long. Once we got there, we tried to go into the doors and they were locked!!

Friday, May 23, 2008

Praying...

I don't know how many of you also read Nate & Tricia's blog, Confessions of a CF Husband, but he posted yesterday about the tragic death of Steven Curtis Chapman's youngest adopted daughter. I wanted to post about it last night but honestly my heart was just too heavy. I cried for them while my son was napping & the girls were at school, I prayed for them & specifically their son over & over. I went to the memorial site they set up & watched the video of their precious girl & my heart broke for them again. I have a friend who has 2 adopted daughters from China & she has often said that although they are not the daughters of her womb they are certainly the daughters of her heart. She proudly acknowledges that they were adopted in the hopes that others will be inspired by her story. In support of one of Nate's later posts, I don't think using the word "adopted" was meant as a stigma (as some people took it) it was meant as a blessing & an honor.

I cannot fathom what the Chapman family is going through right now but my mind (without my permission) keeps trying to. I suppose it is only human for our brains to jump from deep sadness for them to imagining ourselves in their place. What would we do? How could we go on? We also have a 5 year old daughter and even having my mind briefly pass over the thought of what it would be like to suddenly have her taken from us makes me feel like I can't breathe. Which brings me back to them & the overwhelming grief they must be going through. I have no doubt that God is ministering to them now, quietly in their spirits, in their prayer time, through the people around them & through the prayers of people like us, but still the days ahead of them will be so hard. Walking into her bedroom, picking up one of her favorite toys, going through the wash & finding her clothes, looking at pictures & videos, helping their children as they struggle to understand why this has happened... I pray for them, that in those little every day moments God will walk beside them & hold their hand, give them the words to comfort their children while their own hearts are hurting.

Thanks for listening... D.

Binky Videos

This is the first time I caught Lil' Chris putting his binky in his mouth all by himself. I think it was back in February, he was about 7 or 8 months old.


Here is Lil' Chris putting his binky in all by himself NOW while BOUNCING: )

Thought you might like to see the comparison, but I guess they look the same;)LOL
M

Bouncy Seat Videos & Sharing for the Fist Time

So here are the videos that go with this old post. Like I had said, this was the first time Lil' Chris kept giving back his binky or soccer ball to us and kept repeating it. It was too cute not to get video of: ) I LOVE his cute lil' laugh=)




Hope you enjoyed them as much as we did=)
M

Thursday, May 22, 2008

First time with Ceftin and cold update

I forgot to put this in my last email, oops:)

When we were at the hospital yesterday, I talked to one of the cf nurses about Lil' Chris' coughing. She suggested that it was probably the vest and to up his vest treatment to 3 times a day and to give her a call on Friday. Well, I wasn't very satisfied with that answer, especially b/c I didn't know who she was, she never sees Lil' Chris whenever we go there. So, I kept repeating that he had the cough a few days before we got the vest and that it has been 2 weeks! Finally, she got the picture and said she would talk to our doctor and get back to us. When she did, she HAD to mention that the doctor AGREED with HER, but since he just got off the Augmentin, he was going to put him on another antibiotic. Later that night we went and picked it up. It is called Ceftin. It is stronger (125mg)than Augmentin, so he doesn't have to take 6ml. He only has to take half a teaspoon twice daily for 21 days. Boy is this stuff THICK! Poor kid. It smells like bubblegum, but so far he doesn't seem to like it much. I'll let you know how it goes.

By the way, his nose has finally stopped running over the last couple of days. YEA!!!
M
PS.
I didn't forget about the videos. I'll post them next time=)

Wednesday, May 21, 2008

First Blood Work and Chest X-ray

Today, we took Lil' Chris to get his blood work and chest x-ray done. After talking to Daniel's mom, we thought it would be best for him and for the annual visit. This way the doctors can have the test results before hand, and they can go over the results with us face to face.

The poor thing was screaming and crying the whole time! Those ladies were pretty rough, but I'm sure it's hard to draw blood from a screaming baby who just wants to be held. At first they couldn't find any veins. It took them a while. Then they thought they found one in his right arm, but nothing came out. I felt so bad for him, b/c they were moving the needle all around inside his arm. He just kept screaming. Then they tried his left arm, and finally they got 3 things full. What an adventure!! Now he has a big bruise on his arm. Poor thing:(

The chest x-ray went pretty much the same. He just doesn't like to be held down I think. He kept screaming and squirming! I tried to hold him still, but every time she would walk away to snap it, he would move. Then she would have to come back and reposition him. I felt bad after about the forth time:) But finally he held still. They had to take one x-ray of his chest with him laying on his back, and one x-ray of his right side with him laying on his left side. Not sure why only one side, maybe we'll find out at the annual visit.

All in all, it was horrible! I so look forward to doing that year after year;)

Here are some pics before we left for the hospital. NO screaming and crying yet! I guess he didn't know what was to come;)
He loves my big comfy blue blanket.

M

Bouncy Seat & Banister Pics

Here are some pics of Lil' Chris in his bouncy seat(thanks D, he loves it!), and standing at the banister. He LOVED standing at the banister. He loves standing anywhere!
He was sharing his binky with his Daddy in the bouncy seat. It was the first time he had done that! He kept repeating it too! I'll post the video of it later;)


M

WHAT A MESS!!

I let him eat a cracker all by himself while I washed his bottles, and this is the thanks I get! Just kidding;)
It was a pain to clean up. It stuck to him like glue;) I know some of you are probably like "That's it! That's not a mess!" Well, if you know me, this is a HUGE mess for me. I usually never let him get all dirty. I'm weird like that=)

And yes, I do still put on his winter bib;) Especially for sticky messes=)


More pics and videos to come!
M

Tuesday, May 20, 2008

Annual Visit Stuff

At our last cf clinic visit, they gave us a lot of paperwork to fill out and send in before our annual visit on June 4th. We finally got them all filled out! Yea!! We had to fill out a Food Questionnaire and a Parent Questionnaire. Not too bad. It's actually kinda nice that they do that. That way they know before hand any concerns that we might have. Right now, we don't have too many with Lil' Chris. He is doing great, thanks to them;) One of the last questions was if we had any suggestions for the CF Team, and I wrote..."Just keep up the GREAT work!!"

They also wanted us to get a chest x-ray and blood work done before the annual visit, but I think we are going to wait and do it the day of the visit. They like you to do it before hand so they can go over the results with you at the visit. They wanted to do it at our last visit, but they didn't tell us before hand. I had to get to work, so we didn't have time that day. I asked if it would be ok if we did it the day of the visit, and they said it would be fine. They don't expect anything to be wrong with either test.

At least now we'll know for next time!! We'll plan on a long visit, the visit before the annual visit. Does that make sense???:)

We also got done filling out the application for our secondary insurance. We have to reapply every year to see if we still qualify for it. Cross you fingers!! I hope we get it again, especially now that we just got the vest!! They said it takes about 10 months for the insurance to pay it off.
M

Sunday, May 18, 2008

CF Update

We got his throat culture test back, it is NORMAL!! YEA!! That make 2 or 3 in a row that were normal! Hopefully we can keep that good streak going!

I think maybe the whole runny nose was b/c he was teething. I don't know though, it was non-stop for the first couple of days though. The last couple of days it hasn't been nearly as bad. Thank God;)

He still has that lil' cough since that day we went to the clinic. Not sure if it's a coincidence or not. I wonder if I should call. He only does it once in a while. It's a pretty heavy cough though. Maybe the Vest makes him cough more? Can he even get another antibiotic so soon? He just got done one a week or 2 ago. Help me out moms, let me know:)

M

ANOTHER TOOTH!

I can't believe it, but Lil' Chris has ANOTHER lil' tooth coming in! I saw it for the first time tonight when I was feeding him. It's so cute! It's barely peeking through:) It's right next to his first one, on the bottom in the front. They sure are sharp;)

He also crawled on all 4's for about a minute tonight!! That is until I screamed for my husband to come look. Then of course he stopped and wouldn't do it again:( Maybe next time. I'll let you know, but for now he still mostly does the army crawl all over. He will stand for a second or two though, but then he'll fall in our arms. Too Cute!!
M

More Vest Videos

Here are some more videos of Lil' Chris and the vest. He was cracking me up whenever his binky would touch the vest, it would jump up and down.


He was a little fussy in this one, b/c he wanted my camera.

M

Saturday, May 17, 2008

First Vest Video's

Here are the vest video's that my husband took the first night with the vest. I had to work that night, so I missed his first time using it without the trainer or doctor's help. So he tried to get some good video for me(thanks honey:)
Sorry they are a little dark, but as I've said before, we don't have very good lighting in our living room. Chris tried to use the light from the video camera the best he could.
It's so funny how he was trying to make him laugh;) His lil' shaky voice is so cute!







M

Friday, May 16, 2008

A Better View of The Vest

Here are some pics of the Vest. I hope this helps you to understand what it looks like a little bit better. The shoulder straps are velcro, so he has lots of room to grow. The buckles are adjustable too. The hoses are nice and long so he can play with his toys. So far he just sits still. I know that won't always be the case though:) The hoses are neat, b/c they are interchangeable. All the ends are the same, so it doesn't matter which end you plug into the machine or which end you twist onto the vest. Love it!! There are 4 air holes. 2 under each side where the hoses attach.
So far we LOVE the vest! He has been doing great! It sooooooooo nice not to have to pound on him anymore. It always broke my heart when he would cry. I'm so glad we don't have to go through that anymore! I'll post some video that my husband took last night with the vest later.
Enjoy!

M

Thursday, May 15, 2008

"First Time with Vest" Pics



Here are a couple vest pics. We didn't get too many, b/c the trainer was there. We'll get more later, and maybe some video. It's so cute when he tries to talk(make sounds). His voice just vibrates. He didn't seem to mind the vest at all! I just tried to keep him occupied with some toys. Before the trainer came, I let him play with a lil' pig toy that vibrates. I kept putting it on him to get used to something vibrating on him before we put the vest on. Not sure if it really made a difference or not, but he had no problems with the vest! He did it for 20 minutes non-stop! And he didn't cry once! What a good boy!
His prescription is 20 minutes 2 times a day(morning and night), his frequency is between 10-14 Hz, and his air pressure is between 4-6. The trainer has us do the first 18 minutes at 14 Hz frequency and the last 2 minutes she gradually decreased it going from 12 to 10, while keeping the air pressure at 4 the entire treatment. I will talk more about what the frequency and air pressure mean in a later post for those of you who do not know.
M

Wednesday, May 14, 2008

The Vest Is Here!!

YEA!! THE VEST IS HERE!! It just arrived and now I have to go to work:( It figures. Oh well, I'll check it out tonight when I get home.
Also, the trainer called and she is coming tomorrow morning at 9:00am!! Yea! We'll learn how to use it and she will program it. I CAN'T WAIT!!
I'll let you know how it goes and get some pics of his first time with the vest:)
M

Tuesday, May 13, 2008

Calling All Local CF Moms!

I've been wanting to get all the local CF moms together to chat for awhile now. I was talking to one CF mom the other day and came up with a date that works best for both of us. Now we just have to see if that date works best for everyone else too. We were planning on getting together for dinner on Wednesday, May 28th (we could also do Wed May 21st if that works best for everyone else).

So, CALLING ALL LOCAL CF MOMS! If you're able to come join us for some chit chat, we'd love to have you! I think everybody has my phone number. If not, you can e-mail me. I think we can all learn a lot from each other, since there is a wide range of ages in our CF children.
Thanks,
M

PS. Thanks Daniel's mom for remembering. You read my mind, I was planning on posting about this tonight anyways; )

GREAT NEWS!

I just got a phone call to confirm a few things before they send out the vest. I gave her all the info. Then she said that we will get it TOMORROW!! YEA!! I can't wait! No more fighting to get him to sit still and not cry while we pound on him. She said that within 24-48 hours of us receiving the vest, a trainer will call and set up a time when they can come and show us how to use it and to program it. But you know I can't wait that long to try it;) She said that it comes with a DVD that explains how to use it. So, I may try that out. If I still can't figure it out, I will give my friend a call who has the same machine. When I called her the other day to get her opinion on which vest to chose, she told me that she could talk me through it over the phone if I need help. I LOVE THIS BLOG AND ALL THE HELP I GET FROM ALL THE CF MOMS!! THANKS CF MOMS!!
I'll let you know how it goes, and I'll try to get some pics:) YEA, I'M SO EXCITED!
We have been looking forward to this for 10 months!
M

First Mother's Day Pics

Here are the pics I promised. He was such a good boy all day, even with the start of a runny nose. It has been running non-stop since Sunday. Poor kid. His lil' nose is probably so sore from us wiping it. He hates getting it wiped too. Not bad though, he is 11 months old and this is the first time he has had a runny nose like this. He still has that lil' cough every now and then, ever since we got back from that CF clinic visit(maybe just a coincidence, who knows). Hopefully he gets better soon. Hope you enjoy the pics. Thanks Honey for the cards, taking us out to brunch and for the delicious Dairy Queen ice cream cake:)

Monday, May 12, 2008

The Vest is All Ordered!

I just got off the phone from ordering the Vest, YEA!! She said it should be here in about 1 week. We are going to do a 30 day trial to see if we like it. They are going to send out a Rep. to show us how to use it, but from what everybody tells us, it's not that hard. I called a couple of CF moms in the area to get their advice before we made our decision.

We decided to go with The Vest by Hill Rom. It is the one that has been around the longest, and Hill Rom is the brand that most Hospitals use for their equipment. The Hill Rom also just came out with a brand new model-105. It is a smaller unit, has hoses that will pop right off if need to, has a remote, and comes with a neat carrying bag on wheels. It has a lifetime guarantee, will replace any parts if they break, and will send you a bigger vest for no extra charge when needed.
His chest right now is 18 inches, which is the smallest it can be for the Vest. So, Lil' Chris just made it, thank God! Another reason we went with the Hill Rom, is that when his chest is 23-25 inches, he can get the Chest Vest by Hill Rom. In their latest studies, their breath test(I think is what she called it) has had higher scores when the Chest Vest is used rather than the full vest. There are still tests being done as to which frequency setting works best too. The 2 different vests have different frequencies(which is the speed of compression).

What is The Vest? It is an Airway Clearance Technique. Instead of having to do manually physio therapy and pound on his chest, back, and sides, he would wear this vest that would do all the work for you. The Vest is hooked up to a machine that compresses and decompresses air in the vest to make it beat on his chest, back, and sides. The pounding helps clear the mucus from the lungs, to lesson the chance of bacteria building up in the lungs. This reduces the chances of getting lung infections that leads to irreversible lung damage. The doctors will tell us what frequency to program the machine to. The machine saves that program, so we can just start right away each time. The different frequencies make it pump the air slow or fast, soft or hard.

One of the CF moms that I talked to today said that her 4 1/2 year old girl uses the Smart Vest(a different kind). She does it 2 times a day for 15 minutes each. She uses 3 different frequencies at 5 minute intervals. After each 5 minutes, they tell her to cough, then do the next frequency. She can put the vest on all by herself and turn on the machine all by herself. She has had the vest since she was 3. They all LOVE it.

From what the doctors told us from the very beginning, Lil' Chris and all CFers will wear a Vest for the rest of their lives. They will use it 2 times a day for 30 minutes each when they get older, and maybe use it more when they have a cold and need to get more mucus up. Maybe it is just our clinic or state or country that does this, I'm not exactly sure. I'm just glad that we are getting it now, it will make all of our lives MUCH easier:)

For those who read this blog and don't have a vest, I highly recommend asking your doctor. It could add years to your life I'm told. The only problem is that it is VERY expensive, but WELL WORTH IT. They range from about $13,000 to about $16,000. Luckily for us, our insurance and secondary insurance (that our state has), will pay for most of it, if not all of it. So ask about the vest, ask about a secondary insurance, and ask about other ways to get the vest paid for. I was told that the Hill Rom Vest has a program that will cover the cost if you can't afford it. It doesn't' hurt to ask; )

I'll let you know when we get the Vest and how Lil' Chris does with it,
M
PS. HAPPY MOTHER'S DAY!! HOPE YOU HAD A GREAT DAY!! I'll post some pics of Lil' Chris all dressed up later ; ) It was so cute!

Sunday, May 11, 2008

Happy Mother's Day!

Happy 1st Mother's Day to M & Happy Mother's Day to all our blog Mom's! We so appreciate your encouragement & great advice!! Have a wonderful day with your families!

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Great Strides Walk!

Hi All! I meant to post these for you last night but due to some technical difficulties I'm finishing them up this morning. =)

Yesterday was our long awaited CF walk & it went great! Thanks to Big Chris' Mom & Dad for creating our team & for getting the great T-shirts. Thanks also to the kind lady who donated them! My husband & I really appreciated the support of his family who signed up to raise money & walk with us! A lot of money was raised for CF & a great time was had by all despite the overcast sky! We were worried about getting rained on but the most it did was sprinkle & it actually was nice weather for walking since it was a little cool. Here is a slideshow of pics from the walk! Thank you to all who supported us!!

Saturday, May 10, 2008

Bike Pics

Here are some pics of Lil' Chris' first time riding his lil' bike that he got for Christmas from Oma and Opa(Chris' parents). As I am typing this, Lil' Chris just made his way from the living room to the back door where we have this bike sitting. This is the second time in 5 minutes he has crawled to it. He just LOVES it sooo much! He always wants to play with it. We had a BLAST pushing him in the kitchen on the hard wood floors;)



M

Friday, May 9, 2008

Great Strides Walk

Today is my sister(D) and my mother-in-laws Great Strides Walk, YEA!! I think it is supposed to rain there though. Hopefully it doesn't and they have beautiful weather like we had on our walk last weekend. I wish I could be there in person to thank everyone for all that they have done for Lil' Chris. Last I heard, they were almost at $1000!! That's awesome! I'm not sure how many people were walking, I think it's between 10-15. GOOD LUCK EVERYBODY!! THANKS AGAIN!! Let us know how it goes D,
M

Thursday, May 8, 2008

To Pass the Time at the CF Clinic

This is what we did while we were waiting for different doctors to come in.



They both had a BLAST!! I hope you have sound to hear his cute lil' laugh =)



Aren't they so cute?



Don't worry, it was very warm in the room and we were waiting for the nurse to come in and measure him for the Vest. His chest is 18 inches! The first vest they tried on him was a little too small even! Which means he probably could've had the vest sooner, so that stinks. Oh well. I think it was a 17. I think we are going to get the 20. It fits him a little better.
M

The Vest! YEA!

This is a video of The Vest by Hill-Rom. Lil' Chris didn't seem to mind it too much. So, that's a good thing. He didn't cry at all!

They tried this one and the other one on him for a few minutes each. I don't know if just that little bit of time did anything or not, but he has been coughing a little today. Not sure if it was from that, or even if that is supposed to happen. Or who knows, maybe he caught something while walking in the halls at the clinic. There was a teenage girl walking in front of us when we first got there, and she kept coughing. Once we noticed that she was going in the same direction(toward the CF part), we stopped to let the air clear a little bit before we walked down the hall after her. Hopefully he didn't catch anything in the air if she did have CF. I think from now on we'll throw a thin blanket over the stroller as we walk around the hospital just in case; )
I've been trying to research the 2 vests all day on-line. I still can't decide. Here are the 2 websites if you would like to check them out. www.respirtech.com and www.thevest.com. Let me know what you think: )M

BIG EXCITING NEWS!

Ok, the BIG EXCITING NEWS is:
Lil' Chris is getting the Vest!!
YEA!!
We were completely SHOCKED when the doctor said "I think he is ready for the Vest!"
My jaw dropped! We weren't expecting to get it for another 7 or 8 months! We were soooooo excited! I told him it is coming just in time, b/c he is beginning to crawl and it is getting harder to do his CPT(manual chest physiotherapy). I asked when we would get it, thinking it might be another month or so, but he said 1 week! My jaw dropped AGAIN! I can't believe the time has come! We were so excited when they brought one in to try the different sizes to see which one fits him. We were taking pictures and video. They all probably thought we were nuts! Oh well, it was his first time with the Vest! I couldn't resist. I'll try to post the pics later.
They tried 2 different machines to see which one we wanted. We have NO CLUE which one to pick. One machine is bigger that the other, but I think the Vest is better on the bigger one. But the smaller machine would be easier for travel. So, I don't know. We signed papers for both, and I am supposed to call after we have decided which one we want. Then they will order it and it will be here in 1 week. Only problem is, we can't decide which would be best for Lil' Chris. We need your help. My husband put a poll up on the right side of the page under Lil' Chris' header picture. If you or someone you know likes one better than the other, please select that one. Leave a comment on here if you like, that way we know why you chose that one.
Thanks for all your help in advance,
M

Wednesday, May 7, 2008

CF Clinic Visit 5/7/08

Our visit went really well. We were there for about 2 hours. All the doctors were really impressed as to how well he is doing and how well he is growing. He is just under 21 lbs. and is a little over 28 1/2 inches long! The CF doctor said that he is growing so fast, that we have to keep up with him, so he upped his enzyme intake from 2 to 3 enzymes with every feeding. And since he will turn 1 before our next visit, he told us to stop giving him salt when he turns 1 and to up the Vitamax from 1 ml to 2 ml once a day. Other than that, they gave us some paper work we have to fill out and then mail in so we can go over it at our annual visit on June 4th. Wait a minute, he turns 1 on June 6th! So, we do have our next visit before his birthday! But maybe they don't do a check up at the annual visit. I don't know. I guess we'll find out next month. That's about it. It went very well, and Lil' Chris was so good the whole time :)
Oh wait a minute, there was one other exciting thing ...

M

Tuesday, May 6, 2008

11 Months Old Today!

I can't believe my baby will be 1 next month! He won't be a baby much longer :)
Here are some pics I've taken lately. He keeps wondering where he's not supposed to. But don't they all ;) He always seems to scoot his way back behind the exersaucer to get to the fireplace. It's so cute! Now he goes all over! I guess it's time to baby proof the house! I couldn't believe it when he managed to get that Road Atlas out from under the couch! That stinker =) He's too funny! Enjoy the pics!



Wish us luck. We have a CF Clinic visit tomorrow morning at 10:00am. I'll let you know how it goes.
M

PS. Happy 11 months to Chloe too =)

Look What Lil' Chris Can Do!!

Ok, I know you all have been waiting for this. So here it is...


Can you believe it? My baby is crawling! Well, army crawling, that is =)

He also has a little tooth coming in! How cute!! (It only took 11 months:) It's pretty sharp too! You gotta be careful putting your fingers in their now :) I tried to get a picture of it, but he wouldn't cooperate. I'll keep trying though.
M

I Don't Want to Have to Miss Him Someday

I'm really glad D wrote that last post. That song has been one of my new favorite songs ever since I heard him sing it on the Apprentice. I think I cry every time I hear it, b/c it makes me think of Lil' Chris and how I don't want to miss anything in his life and I especially don't want to have to miss HIM someday.

Another reason I'm glad D wrote that last post is b/c I've been wanting to write about something along those lines, but I'm not sure how to put it into words. I don't want to be a downer or offend anyone, or make anyone think "How can she think like that?". So, I've gone back and forth about it, and have decided to write about it anyways. Maybe I'm not the only CF mom who thinks this way. Or maybe I'm just weird for always thinking of the future and preparing myself for what might happen someday.

Every now and then, when I'm holding Lil' Chris and happen to pass by a mirror (usually the one in my bedroom, b/c it is huge), I go back to that mirror and try to take a picture of that moment in my mind........

(Sorry, It's taking me a little bit to get through this, b/c it is the first time I have ever written about it.........one of the reasons why I love this blog, I feel like I can let it all out.)

Ok, let's try this again ... I try to take a picture of that moment in my mind for 2 reasons. The first being, he is going to grow soooo fast, and I always want to remember how he was at this age. I can remember the first time I did this, and I look now, and see this BIG boy! I say to myself "Where has the time gone?" I remember him being so tiny like it was yesterday. I sometimes try to picture us when he is even bigger too. And of course I can picture myself saying "Where has the time gone, again?" LOL =)

The second reason is ... that I always want to remember that moment. I don't know how many moments I may have like that one. Now, I know with all the advances in medicine and research, that Lil' Chris will mostly likely live into his 30's maybe 40's or 50's, but there is always that chance that something might happen one day sooner than that. I hear and read about young ones and teens with CF dying, and it makes me think, "You never know". That's why I try to take a picture in my mind of me holding him at this age and this size, so that later down the road...if something were to happen...I would always remember those special times and how perfect and special and cute he was. I don't ever want to forget him or his cute smile or the little things he does.

Sometimes I forget that I am a CF mom until I have these moments or until I talk or write about them, like I am now. It almost makes me cry a little bit more when I have these moments, b/c it makes me think "When did I become this CF mom who has to think like this?" or "I don't want to have to MISS HIM someday!" I pray that I will never have to.
M

Back to Blogging!

Hi Everyone! Sorry I've been MIA for a while! It's been a busy couple of weeks around here. The hubby & I are in the process of moving our family to another state & we're in the midst of final planning & details. Our house here sold rather quickly so we're living in an apartment for a couple months until the kids are done school. Yup, in an apartment...with three kids... all the Mom's that are grimacing right now - I'm right there with you! =) Truthfully it hasn't been that bad, it's only just starting to wear on me now & there's not too much more time to go. Anyway, I digress... This blog is about Lil Chris & CF! I just didn't want you guys to think I've been ignoring you. =)

Even though I've been busy lately, I've made time every day to sit down & catch up on M's blog posts. I'm so excited she had such a great time at her walk on Sunday & that she was able to surpass her fundraising goal! She worked so hard in the short time she had to find ways to raise money & awareness for CF...I hope she feels a real sense of accomplishment & pride! I sure am proud of her! Our Great Strides walk is this weekend & we're all looking forward to it. My kids can't wait & although the weather looks like it might not be the greatest we'll all still be out there rain or shine! Thank you to the person who donated on our A Cure 4 Lil Chris Great Strides page yesterday. We greatly appreciate your support in the search for a cure for CF! We only have a couple days left before our walk to meet our fundraising goal & your support means a lot!

This blog has become such a great support system for M - helping her in ways that we as her family really cannot. Her experiences as a Mom are so different from ours (me, my sister, my mom etc.) that it's difficult for us to know when good "mom" advice applies. We're all learning about CF along with her & this blog has been a tremendous help to all of us. It's such a blessing to know that M has this support system of other CF Mom's who've been there, done that & enjoyed their children even when times are rough! I am learning from your example CF Mom's so that when my kids are making me crazy I try to be thankful for them instead of exasperated with them. Does it work every time? Welllllll, I try! =) Three of them at once has been challenging! I had it all worked out with just the two girls but my son has pushed me over the edge a little bit in terms of managing them, me, the household, the job & of course the hubby. I'll be letting the job go when we move so I hope to have better reports on my attempts at being thankful even when they're making me nuts. =) Let me preface this next statement by saying I am not normally a country music fan, not that I don't like it it's just not normally my first choice, however my Dad mentioned a song to me the other day that he said makes him think of me & my husband when he hears it. So I looked it up yesterday & of course it made me tear up. It was like my Dad had written that song... he's been telling me those very things since I was a teenager. I don't say it enough but I really appreciate him for being a great Dad & for not wanting me to "miss this". As I listened to the words my mind conjured up images of me as that young girl listening but not really hearing my Dad & then fast forwarded to me saying those same things to my own daughter & wanting so much for her to really hear me. The words of the song are so true. I've always known it, even when Dad would say "slow down D, enjoy this time in your life, enjoy these kids..." but you know how it goes. Life happens & we just blow along with it trying to cover all our bases & not realizing in those moments how quickly the time passes. Anyway, not to get maudlin or anything but the song really struck a cord with me. Here is a link to the song You're Gonna Miss This by Trace Adkins. Thanks for listening to me today & enjoy!

Monday, May 5, 2008

Guess what???

You'll never guess what Lil' Chris' new milestones are ; O
I'll try to get video if I can, or at least some pics.
I'll try to get some pics of our walk too: ) Right now, I'm exhausted after walking 6 miles yesterday instead of the 3 I was told it would be : ( And then I was on my feet all day today at work, so I'll try to nap a little and download some pics or video's later. Sorry: (
M

Sunday, May 4, 2008

What A GREAT Walk!!

We just got back from our walk not too long ago. We had a BLAST!! It was soooooo much fun! We had 20 people walk on our team! I never thought it would be that many! So many people showed us soooooooo much support. We can't thank them enough.
Big Thanks To All Our Walkers:
Rita
Casey W.
Casey C.
Missy
Stacie
Beth
Kathleen
Kaitlyn & Chris
Sue, Jenna, & Max
Karen, Dave, & Kylee
Travis
Sean
Brian
We also had some last minute donors. Thanks Rita and Kathleen for bringing our total to $1,894!! YEA!!
They announced that their were about 300 people total walking and all together raised $40,000. That's a lot of money!! I'm so glad that there are so many people dedicated just as I am to helping find a cure for CF. I can only hope that we can raise that much next year at our own town walk, and every year after that.
Everybody on the committee was so eager to find me and talk to me. It was kinda funny:) They were all very thankful that I brought such a big company name to their walk. They all asked if I would be back next year. I told them that we are planning on having one in our town next year(they didn't talk to me much after that:). It would be much closer for everyone we know. Plus there are so many families here that have someone with CF.
Thanks again everybody for ALL your support and donations! We appreciate EVERY penny! You have no idea how much it means to us. Thanks.
Well, it's all over. . . until next year=)
M

Saturday, May 3, 2008

Big Day!

YEA! The day has come! The walk is here! I'm so excited, I can't wait to walk!
We got some more donations today! Yea, I can't believe all the support we are getting from everybody, especially our neighbors...

BIG Thanks to:
Jeff & Melissa
Deb

Don't we have the BEST neighbors EVER!! They brought our total to $1809!! WOW!! Thanks you guys!
Big thanks to Becky too which brings our goal to $1819!
And I have to give a BIG THANKS to Jean for bringing a huge tub of ice cream into work to get 50 cents for a dip to raise money for Lil' Chris! So far she has raised around $15 and there is still a lot of ice cream to go ;) GREAT IDEA JEAN!!
So, our goal was $1500 and we have raised $1834!! WOW, I'm still amazed :0
Thanks again everybody!
I'll let you know how the walk goes.
M

The Things People do for CF

I was reading Nate's blog this morning and started reading about The Pressure Boys and their story of his little girl with CF. I think he puts their story into wonderful words. I also think it is GREAT that all the money they get goes to the CFF to help find a cure.

I also think it is great that the twins wrote a book on their lives with CF. I would love to read it some day. I was reading the comments that people wrote about the book and noticed that the NFL Quarterback (Boomer) who has a child with CF read it and said it is a must read for all CF parents.

I don't know how Nate finds all these things that people do to help raise awareness and money for CF. Did you read about that guy that stands outside of the Oprah show breaking boards with his bare hand? That's insane!! But if it works, it will pay off. He should go outside of the Ellen show, she would probably let him on the show; ) Wow! I just went back to that site to link it above, and was reading the Readers Comments after the story, and I couldn't believe it! Apparently the guy is a scam artist and abandons his 10 year old sick son all the time! That's a shame that he is using his son's sickness to try to get famous. But who knows, maybe all this drama will be a good thing for getting the word out about CF though.
M

Friday, May 2, 2008

Walk Update

We raised another $50!! So, our goal is $1500, so far we have raised $1159! When you add the $500 my work is donating after the walk, is brings our total to $1659!! YEA!! When I mention this at our meetings at work, everyone gets so excited that we made our goal. I love it!

Big Thanks To:
Sean
Michelle
Gloria
They are our wonderful neighbors!! It's so comforting to have such great neighbors who always lend a helping hand whenever needed. Thanks guys:) Sean is going to walk with us on Sunday too:) YEA!!
We are all ready for the walk this Sunday! Only problem is that it is supossed to rain and be in the 50's I heard. That kinda stinks, but we'll still have fun anyways! We made pins with Lil' Chris' picture in them for everyone on our team to wear to represent Lil' Chris since he won't be there.
M
PS.
Thanks Rita for your donation the other day! (She was the one I that I didn't know their name yet.)

Lil' Chris Update

Lil' Chris woke up fine the other morning after his rough night. He was fine all day yesterday and he slept all through the night. Then he was fine all day today too. It was like nothing ever happened the other night. Amazing how they bounce back so fast! His cough is still getting better. My husband is going to pick up the LAST bottle of Augmentin right now! YEA!! We're almost done! Hopefully he doesn't get another cough any time soon:)

neilcharm,
I never heard of doing that. I don't know if he is too young. We are going to the CF clinic on Wednesday, so I can ask them if that would be something we could do to help him. I'm always up for trying new things to see if it helps:)
Thanks for all the prayers,
M

Thursday, May 1, 2008

Great Strides in our Town!

These are the first few posts that I refer to below:
First post
Second post
Third post
Fourth post
I've been meaning to blog about this for a while. Remember when I was supposed to have that meeting with that guy to go over starting a Great Strides Walk in my town? Yeah, well he called and canceled b/c he was sick. Which I thought was great, b/c we don't need any of us getting sick. He was supposed to call me back, but never did. I was going to call him, but I called him back the first time he said he was going to call me and never did! So, my husband and I had to make a decision b/c it was getting close to May(when most walks are). We went back and forth as to whether we should wait and see if this guy is for real and will actually get a walk started this year, or whether we should forget about him now, and just sign up for the closest walk to us. We didn't want to miss out on a walk this year, so we decided to sign up for a walk and wait til next year to start one in our town. It was kinda too late to get one started this year anyway. You need a lot of time to plan a big event like that.

So far, I know that I need to get a committee of like 5 or 6 people together to help organize the walk. I was happy to read Daniel's mom's comment today. I was hoping she would want to help. Now that I met another CF mom just up the road, maybe she can help too. If our spouses help too, that makes 6 right there!

I already have a few great ideas for the walk. And I LOVE the beaded necklace idea! I have had a lot of people tell me that they would definitely go to one in town. So I think we will have a great walk next year. I can't wait!!

M

Rough Night :(

Well, Lil' Chris didn't have such a great night last night. Around 1:30 in the morning, my husband and I heard him crying. We both knew it was the cry he makes when he just threw up. So of course we both jumped up and ran into his room. My husband got their first and picked him up right away and held him over the changing table hoping to get the rest out. Meanwhile, I was taking out the blanket he threw up all over. I said, "Wow, none got on the sheets". Then my husband told me he peed threw too. That has kinda been happening lately, b/c he is soooooo ready for size 4 diapers, we just haven't made it to the store yet.

Anyway back to the throw up, b/c I know you want to hear all about it;) He was just non-stop crying and screaming. It was kinda slimy, and it kept coming out of his nose too. It reminded me of when he was a lot smaller and used to do this all the time. He got a little bit more up, but then after we changed him, he would try to throw up, but when we held him over the changing table
(easy to clean up), he would stop himself. After a few times of that, Mommy had to take one for the team! I continued to hold him and I was doing CPT on his back to try to get it up. This time when he started, I didn't put him down, I just kept holding him and pounding his back and it just went ALLLLL over ME and HIM. GROSS!! But it did the trick. If I would have held him over or put him down, he would have stopped. So now he got it all up, which made him feel much better, and made me feel much better too.

After we changed him that time we tried to suction his nose. You could hear it was in his nose and it was in the back of his throat. Poor kid :( He of course did not like the suctioning, but we knew it would help him sleep better. So, we got most out, and we put some soft music on, and then he started to settle down. Chris was holding him, and he just slowly started closing his eyes. Didn't take him too long, he was so exhausted. It took a lot out of him. Chris put a pillow in his crib to prop him up a little bit(we learn that from last time;). When we put him down, surprisingly he didn't get up the whole rest of the night! I couldn't believe it!!

We are still unsure what caused it. It could've been that he tried some Spaghettios a little after an hour after his enzymes. (The enzymes only work up to an hour). I asked the CF doctor last time we went about tasting foods. He said that he doesn't need his enzymes if it is just a taste to see if he likes it. So, now we let him try all kinds of stuff! Maybe he had too many tastes yesterday. Maybe he does need his enzymes, although it never bothered him before. Maybe that's not what caused it. I would think it would just run right through him, not make him throw up. I wouldn't really know, b/c we have never missed giving him his enzymes since he was 2 weeks old. That's just what I have heard. Who knows why it happened. I just hope it never happens again. I hate seeing him cry like that.