Wednesday, April 30, 2008
I wanted to post Susanna's comment(hope you don't mind Susanna:),b/c she gave a WAY better explanation to the cross-contamination than I did. She even taught me something ; ) Thanks Susanna! Plus, I don't know about anyone else out there, but I was always curious about 2 siblings having CF. Thanks for explaining Susanna. It kinda put my mind at ease a little bit, if we were to ever have another CF child ;)
Thanks for also telling me about the beaded necklaces. I wondered if they did something like that. I guess I'll find out in a few days if they do that at the walk that we are going to. I definitely will suggest that for the walk we start here in our town next year(I'll explain later).
I will be praying for Janna and your whole family. Just remember, the Lord is always in control. He will see you through this. He will guide you to make the right decisions for your daughter.
PS. So happy to hear about Janna's clear throat culture! YEA ;) Hopefully Lil' Chris' will be clear too:)
Hi M, I'm only going to be able to make a few 'scattered' comments tonight, but the discussion has been so good that I don't want to drop my end of it:-)
As for Cross-contamination; Timothy would've been nearly 5 and a half now, and I know that even when he was diagnosed at birth, they had already done away with the CF support groups and mixed activities. Here's the big deal (I think:-)... as CF progresses some CFers can develop bacteria that becomes resistant to the antibiotics that we have to treat them with. That's when the lungs really begin to be scarred and the lung function really begins to drop. These bacteria never settle in a non-cf lung because our secretions are able to effectively move anything out that doesn't belong. On the other hand the thick mucus' in the CF lung make it difficult to get rid of those infections. The problem with mingling with other CFers gets really tough when someone may have one of these antibiotic-resistant forms of bacteria and not even know it yet! Overall, they've decided it just the best rule to keep the 3-5 feet apart (or more).
All that said, I have 2 CF babies in the same home!! Janna's culture grew out psudomonas a week or two before Chloe was born! I was afraid that meant Chloe would get it from day 1. But apparently, different people respond somewhat differently even to the same bacteria, because Chloe (nearly 11 months) has not grown out psudomonas a single time!! Thank God. (And she's had cultures every 4-6 weeks) I do my best to keep Janna and Chloe from cross-contaminating each other. They don't use the same spoons, I don't dump their enzymes into the same bowl of baby food, they don't share bottles, or sippy cups, I try to keep Janna out of Chloe's face especially if either has any kind of cough or runny nose... BUT they are sisters. And we are a family that is very verbal and demonstrative in our affection and love. So when mom and dad are hugging and kissing :) ...the kids are too:) Especially if there are ouchy's involved:) We do encourage Janna to hug Chloe from the side or back and to kiss her forehead or hair instead of lips or nose.
One more thing:) About the Great Strides walk ... at the one here they actually gave out colorful beaded necklaces to anyone who was there with CF. That way it was something pretty to wear, let other people know that here was someone that they are actually walking to help, and yet it also let CFers know who to keep those 3-5 feet from:) I really liked being able to know those things:)
Thanks to Daniel's mom for responding to my questions. The doctors have been talking about a G-tube for Janna that would stay in for YEARS to come! Her weight is still a little low compared to Daniel's (him at 34, her at 28; he'll be 3 in July, she'll be 3 in Oct; but she was also 11 lbs 7 oz at 7 months old!). We are still saying that we are going to wait until she is 3 to 3.5 years old to even seriously consider the G-tube again. I believe she's doing so much better than the first 18-22 months of her life...We'll I've gone on and on again:) Please forgive me I'm sorry if it's a little difficult to follow.Good night and God Bless you, Lil' Chris, and all those that love him.
Tuesday, April 29, 2008
Daniel's mom here. Susanna - M was right, Daniel was on the feeding tube for 6 months. It made a huge difference in getting his weight up, and getting his minerals and vitamins back in balance. He was around 12 lbs when he was admited to the hospital and part of that was water retention. Dnaiel was 34 lbs at his check up earlier this month. I found the hardest time to get him to gain weight was 1 year to 2 years of age. At 2, he finally got interested in food, and hasn't looked back! It sounds like your daughter's weight is doing great. Congrats on your daughter's clean culture. Daniel had psudomonas last winter, and it is such a relief when the culture is clean! M- your fundraising is going great! It is so neat that you have a company this is so supportive. Let me know how the walk goes. Two kids are in bed, now to get the 9 year old going!Daniel's Mom
M- okay one more quick comment before I get S to bed. My husband and I also found this frustrating. We did the same kind of CPT with Daniel when he was that age. It is so hard to know for sure if you are doing it "right" I always used the rubber cups, but my husband used his hands. It looked like he was playing the drums. Another 6 months or so, and you should be able to get Chris the vest. I know Daniel was around 18 months, and you know how much I love it!Daniel's mom
I can't wait to go to our 1 year visit in June to learn all kinds of stuff, esp stuff about CPT(chest physio therapy). I love our CF clinic, but there is always one thing that surprises me every time we go. The doctor asks how we are doing the CPT, he writes it down, and that's it! No, "Ok, but try this since he is getting older, or we'll have the Physical Therapist here next time you come just to make sure". I'd kinda like some reassurance that we are still doing it right! He is MUCH bigger since the last time we saw the PT. He was only 6 week old at that time when we first started the CPT! Now he is sooooooo much bigger! I really feel like he may be missing out.
Here is what we do every morning and night when he lays on the changing table...
-with our cupped hand...left front chest and left side at the same time for 2 minutes.
-then flip him, and do right front chest and right side at the same time for 2 minutes.
-then put him on his belly and do 2 minutes on his upper back with cupped hand, or rubber thingy.
Lately, if I use the rubber thingy, I've been using 2 at the same time to get both sides. That's not the way they taught us, but I have a feeling that it is better for him.
Did anybody else do anything differently? I'd love to hear some advice.
Monday, April 28, 2008
Firstly, thank you Daniel's Mom for telling your story. As I said in my comment, I think you are a great mom and a great cf mom role model for me. Thank you for always being there for me. And I hope you know that I am always here for you, just a phone call away:) I always enjoy our lil' get togethers. I look forward to our next one. Hopefully we can get all the cf moms in this area together. That would be a lot of fun. I can't wait!
To answer Susanna's question about Daniels weight, I don't know, Daniel's mom will have to tell you that one. But I'm pretty sure she didn't mean to say that Daniel was on the feeding tube for 2 or more years. I can't exactly remember how long he was on it, I think it was for like 6 months. She'll clarify that I'm sure.
To answer Auntie Steph's question about cross-contamination ... CF people carry bacterias in their lungs. When they cough, it becomes air-borne. Although WE don't catch that bacteria, other CF people can. And no CF person wants anymore bacteria in their lungs than what they already have. That's why it is very very important to keep CF people at least 5 feet away from other CF people (at least, I think that's what they say).
This is the reason why we are not taking Lil' Chris to the Great Strides Walk on Sunday. It is not worth the risk of him catching anymore bacterias. Yes, some CF people do go to the Walks. You will most likely meet some at the walk you are going to, but it will be hard to tell who has it and who doesn't for some.
When Daniel's mom and I were talking the other day, we were telling each other about new CF moms in our town. Although it will be nice for us to get together and share stories, on the other hand, it is kinda scary, b/c you never know if our kids might bump into each other and not know it. I just thank God that the researchers or whoever, realized this. I think it's only been known for about the last 8 or so years! Susanna could probably tell us.
When Lil' Chris was younger, I read a book about a girl who grew up with CF. It was kinda like a diary of what she was going through, hospitalization, double lung transplant, things that happened to her after the transplant, etc. She was actually born the same year I was, and I remember her saying how she had sooooo many CF friends, b/c she used to room with them in the hospital. I felt so bad, b/c she and the doctors at that time didn't know that it was making them all worse. The book was called "Breathing for a Living" by Laura Rothenburg. I was actually just telling the new CF mom that I met at work the other day about this book. I came across this book at our local library when Lil' Chris was first diagnosed. My husband and I went there looking for something to read about CF. This was the only adult CF book we could find. I couldn't put it down. You should check it out if you ever have the chance.
Feel free to ask anymore questions,
Sunday, April 27, 2008
Thanks so much for sharing this story with us Daniel's Mom & I hope you'll keep us updated on the blog with his progress!
I would be happy to share Daniel's story, but writing is not my strong point so bear with me. Daniel, who will be 3 in July, is the youngest of four children. We also have J (13), S (9) and K (7). With all of my pregnancies, my husband and I opted not to have any prenatal testing done. Even though the doctors pushed it when I was pregnant with Daniel (I was the ripe old age of 39), we didn't feel the need. Daniel was born at 10lbs 9 oz. Absolutely beautiful. At two weeks of age, Daniel started throwing up all the time. I had nursed three other children, and I knew the difference between spitting up and vomiting. Thus began 6 months of weekly weight checks and two pediatric gastroenterologists (one tried to convince me that it wasn't Daniel throwing up that was causing the weight issues it was my faulty breast milk!). Besides throwing up, Daniel had diarrhea, wheezing, a diaper rash that wouldn't go away and generally not looking well. I cannot tell you how many tears I shed wondering if anyone was going to figure out what was wrong. On 1/16/06, when Daniel was almost 6 months old, I took him to the doctor's for his wheezing and weekly weight check. Daniel had lost an entire pound in one week and looked like he was retaining water in his legs. The doctor said he thought Daniel might have Cystic Fibrosis, and needed to be admitted to the Children's Hospital. We spent 15 days in the hospital where the diagnosis was confirmed. Due to the CF, Daniel is pancreatic insufficient which meant that all the nursing he had been dong for 6 months went right through him. At the time of diagnosis, Daniel was very malnourished and his vitamin and mineral levels were a mess. When we left, Daniel had 4 new medications to take everyday, a feeding tube, breathing treatments and we learned cpt. For us the diagnosis was a relief. We had worried so long and now we had a treatment plan in hand - we could be proactive. In case you are wondering, there is not a history of CF on either side of our families. Fast-forward, Daniel will be 3 in July and is doing great. Dealing with CF has pretty much become the norm in our house. Every day he does 3 breathing treatments, 1 hour on his vest, takes 2 vitamins, 1 Prevacid and 2 enzymes every time he eats. He is a champ about it! M and I were able to meet when our CF Clinic asked me if I would talk to a new Mom about CF. I jumped at the opportunity to help. I could not imagine being a new mom and having a baby with CF, and hoped I could offer some support. The connection has also been great for me. When M and I talked on the phone the other day, and I was talking about Daniel's cultures. I didn't need to explain my frustration that Daniel was growing new bacteria , M knows and understands. The only sad part is that because of cross-contamination, our boys will not be able to play together. I think I having taking up enough of lil Chris' blog, if you got this far, thanks for reading Daniel's story.
These are some old pics of when Lil' Chris loved his green hospital pacifier. It was the only pacifier he would take for the first 6 months or so. We desperately needed another one after the first month or so. At one of our clinic visits, a nurse told us about these animal ones that have weights in them so they don't fall on the floor when they spit it out. So we went and bought one at the hospital store for $10. We thought it was a lot, but in the end it was well worth it! We chose a Duck, b/c his bathroom is all ducky stuff. Lil' Chris looooooooooved his Ducky pacifier! It went everywhere with us...restaurants, Dr. visits(sorry about that pic), shopping...pretty much everywhere we went. As soon as we put it in his mouth, he would instantly calm down. Magic I tell ya! I'm also glad we got it, b/c I think it helped him to learn to hold onto things at a very young age. He never let go of it. It was so cute!! Anyway, here are the pics of the hospital binkies that made my life so much easier...
Hi I just want to tell you that I read your blog every single day. I may not always comment but I adore the pictures of Lil Chris and the comments Aunt D and yourself give. About the programme, my daughter tells me at the moment she has had MRI, CT scans, bloods, exercise programmes, physio (which is no longer percussion but breathing from the diaphragm, coughing up the sputum and is on DNASE which is a very expensive drug - in South Africa only the very rich can afford this medication whereas in London she gets this meds on the NHS because she attends the CF clinic at the Royal Bromton Hospital (we jokingly call it the Royal Brompton Hotel). She does all her IV treatments at home and at work - the company she works for have a medical room which she has permission to use at any stage. This programme is a 3 year stint, whereby they measure, scan, bloods, sputum, diary, etc....and she has to go to different hospitals in Britain, mainly in the London CBD area for different sections of the programme. When she becomes ill with infection, the programme gets halted until she is better and then they carry on because the results can differ quite a bit with the antibiotics. Thats all I know for the time being but that she is doing so much better there than here in SA. I do miss her terribly but she is a determined little miss (shouldnt call her that - she's 27yrs old) and has goals set in her life that she is determined to achieve no matter how long it takes. Whenever I do get info from her regarding the progress of the programme I will be sure to let you know. Promise. Afterall, this programme is for the benefit of all CF'ers. So Hold thumbs. God Bless you and your whole family and I hope this is a little bit of hope for you. Till next time....please keep us updated about Lil Chris.....brings back sooooooo many memories when C was growing up......hugs xx x x x x x
I'm so glad to hear from you again! I was hoping you still checked in with us. It is great to hear you check in daily and that it brings back many memories for you. Please feel free to give any advice at any time, Lord knows I need it: )
Hope to hear from you again soon,
Saturday, April 26, 2008
So far, I've only talked to Daniel's mom and one other CF mom who's # I got from Beth at work. Oh yeah, and of course now my blogger CF mom's ; ) Susanna and I think anonymous or neilcharm was the other one (or maybe anonymous turned into neilcharm???). I hope you still check in with us. I miss talking to you in the comments :'( I'd love to hear an update on how the program is going!
Daniel's mom was telling me that she found out that there is another CF mom here in our town that has a 3 or 4 month old. Hopefully we can all get together and talk and share stories over lunch or something. Don't worry, we will all get babysitters ; )
I'll explain more later on how Daniel's mom and I met and more on the other CF mom too. I figured I should get their permission first before I blog about their story. Hey Daniel's mom, if you are reading this and want to share your story, do so in the comment and then I can cut and paste it on the blog. I better go, I hear Lil' Chris playing with something he shouldn't be; )
Friday, April 25, 2008
Isn't that a wonderful statement! It gives me such hope for Lil' Chris' future!
Thank you all for helping this dream to come true.
A few days ago, we went to our local Christian Book Store to see if they could do anything. The lady said that the manager was on vacation, and to come back on Thursday. So last night we went back and I talked to the manager there. She ended up giving us 3 $5 gift certificates for the top 3 people who raise the most money! Wasn't that soooooooo nice!! I was so excited to get a response like that right away. Everybody else says they have to go thru corporate.
So now, I have some incentive for people to raise more money! YEA!! Hopefully I can get some more stores to do the same. The more money raised, the closer we get to finding a CURE and a more normal life, not just for Lil' Chris, but for all CFers. I really hope we make our goal of $1500. I want to know that I did all I could to help find a cure for all CFers. It'll be a GREAT day when I hear the words "CF now stands for Cure Found!" I'll know that I had a hand in finding that cure and so did all the people that donated for Lil' Chris.
Thank you sooooooooooo much everybody who has already donated!!
If you'd like to know that you had a hand in helping find that cure too, then email me to donate. Every little bit is one step closer to a new, better life for all CFers!!
Thursday, April 24, 2008
Wednesday, April 23, 2008
Tuesday, April 22, 2008
As for my team who is walking on May 4th, we have raised about $300 toward our goal of $1,500. Tomorrow is my first Jeans for Genes Day at work. I'm so excited! Hopefully we raise a lot of money! I'll let you know how it goes.
An associate came to me the other day and asked if she could do a bake sale to raise $ for Lil' Chris. I was ecstatic!! I couldn't believe someone (who has a lot going on in her life right now with her very sick granddaughter) would go out of their way to help us. It blew my mind how generous and kind some people are in this world. Thanks you so so much Karen R. You also gave me a great idea! I talked to one of our local restaurants last night, as my husband and I were going around town handing out flyers or posting them in places or talking to managers for donations, and this restaurant said they would donate food, like cookies and stuff. I thought about what Karen said about doing a bake sale, so I'm going to call them back and set up a date and time. I can't wait! It should be a lot of fun!
Big Thanks to:
If you would like to donate to my walk, please email me here.
Thanks for helping find a cure for all CFers!!
You know what's kinda weird? When I called the doctors the other day, they never said anything about doing his CPT more. Usually when he has a cough, they tell us to do his CPT 3-4 times a day instead of 2 times a day. I did it when I could anyways. It can't hurt : )
Thanks for all the prayers, and please continue to pray for Susanna's daughter(Janna), that she gains all the weight the doctors want and more : )
Monday, April 21, 2008
So, for those of you who don't always read comments, here is Susanna's update on the doctor appointment she had for her girls. Please pray that Janna will gain the weight she needs to keep her healthy & out of surgery! Also pray for Chloe's continued health, Susanna & her husband as they care for their precious girls & prepare for their new baby that's on the way! Matthew 18:19-20!
Just a quick note... The pictures are GREAT!! You'll never never regret tons of pictures of your lil' guy.
The Dr appointment wasn't the greatest. Chloe met her weight goal of 19 lbs. But Janna was actually down 2 oz from 6 weeks ago. They really want us to go to G-tube route. But we've told them we don't want to even discuss the G-tube issue for another 6 months or so. We really feel that she is doing so much better than a year to a year and half ago, that we are not willing to throw her into a surgery, more 'things' to deal with, more infection sights, a big thing to try to recover from...We have been and will continue to do our best and our trust and faith is in God. HE is the One in control, and we are doing our best to follow His leading.We should hear something today about Janna's culture that was taken Friday. Hoping for the best there.Going to have to run. You've probably seen it already, but Tricia is being discharged tomorrow!!! (Yeah!!) That's awesome.God Bless ~ Susanna
We're so thankful that you are a part of our blog family & we will all be praying Susanna!
Saturday, April 19, 2008
The FREE meant only one pose (we knew there had to be a catch). But they all turned out so cute! Plus we haven't gotten his picture done in a while. When they showed us this style with 4 poses, we couldn't resist. We did get a huge discount though. It only cost us $8.95 instead of $24.95. Plus, we had a lot of fun : )
Thanks to everyone who checks in with us daily. We can't tell you enough how much all your comments mean to us. I hope you continue to leave many more comments, as I love to read them all and always look forward to reading them.
Thank you also for telling others about our blog as well. The more the merrier!! I just hope that we can help others who are going through the same thing, and vice versa. I've loved and appreciated all the GREAT advice everyone has given me. I hope you continue to do so. I'm always open to anything, esp. if it can improve my son's life.
Friday, April 18, 2008
And then when I got home, I got a check in the mail for another donation from Chris' mom (Oma is what the grand kids call her). Thanks Oma!
I still have to make some more flyers up to put around town. Hopefully we make our goal, I was a little worried there for a little bit ; ) I think we can make it now!
Here is what I posted at work...
1. A Flyer
-explanation of CF
-info on how they can donate
-cash, check(made out to Cystic Fibrosis Foundation), and Credit Card on line
-info on the walk
-when, where, prizes they could win (they give away 20 or more prizes to those who are registered before the walk.)
Day 1 Make your own $25 contribution
Day 2 Ask 5 neighbors for $10 each
Day 3 Ask 5 co-workers for $5 each
Day 4 Ask 3 family members for $25 each
Day 5 Ask 2 businesses for $25 each
Day 6 Ask 5 friends for $10 each
Day 7 Ask your boss to contribute $25
Raise $150 in 5 days!
Day 1 Make your own $30 contribution
Day 2 Ask a neighbor for $30
Day 3 Ask a co-worker for $30
Day 4 Ask a family member for $30
Day 5 Ask a friend for $30
Raise $150 in 3 days!
Day 1 Make your own $50 contribution
Day 2 Ask 5 neighbors for $10 each
Day 3 Ask 5 family members for $10 each
I can live as
With your help,
I can grow
to be strong
With your help,
I can live
With your help,
Thursday, April 17, 2008
I'm sure she and her little sister Chloe, who is 10 months old, will do just fine and come out with GREAT results and impress all the doctors : )
Praying for you guys,
Let us know how it goes:)
I also asked my boss if we could do a Jeans for Genes Day at work. He said sure if it would help raise money for our walk. So, I made up a flyer to put up at work. Here it is......
JEANS FOR GENES DAY!!
On Wednesday, April 23, 2008 and Monday April 28th
You can wear Jeans by donating $5 to the
Cystic Fibrosis Walk
to help find a cure for Lil’ Chris
See M, Karen, or any manager
to turn in your $5
and in return
get a Great Strides Sticker
to show your support.
Thanks for making a difference
in Lil’ Chris’ life,
Hopefully we get a lot of people to donate. Usually a lot of people jump on the chance to wear jeans! I'll let you know how it goes.
Thanks for all the continues prayers,
Tuesday, April 15, 2008
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
We wanted to tell the whole world the good news, but that's not how Chris and I do things. We like to wait for special occasions to share big news. So around my dad's birthday, we called him and my sister D up and told them the good news. They were very excited, as were we. I thought it would be a nice birthday present for my dad. Which it was.
Then Chris and I decided to wait until Thanksgiving to tell his family since they were coming out to visit us. Plus, it is always better to tell good news in person if you can, and it was only a month away. The longest month EVER! But the day finally came and I still had to wait. We decided we would wait until Thanksgiving dinner to tell them. So, like Steph said in her comment, I asked their son what he was thankful for and then proceeded around the rest of the table. Then it came to us, and we kinda froze. We had been waiting so long to tell them and now it's here and .... we didn't know how to come out and say it. You would think it would be easy, right?
So, we went back and forth looking at each other saying we were thankful for family and the list went on and on .... and then we said that we were thankful that the Lord provided us with this nice house to raise a family in. And of course by this time, I'm sure they all knew what we were about to say. Then Chris said that he was thankful that the Lord blessed us with a new addition to the family. At first, it was almost like they didn't hear what he said, or they were in shock. Then Steph's husband said "Uh hello? They're pregnant!" Then Steph blurted out "Your pregnant?" We were grinning from ear to ear of course waiting in anticipation for their reactions. It took his dad a little to catch on, b/c come on, what guy would be listening to all the thank yous, when he has a big turkey sitting in front of him : )
So, of course they all congratulated us and gave us hugs and kisses. Next thing I knew, before we even finished eating, Chris' mom got her cell phone and said "Here you gotta tell Mom mom(Chris' grandmother) the good news." She was on speaker phone so it was kinda hard for her to hear us. We tried to tell her, then she started talking about all the pies she made for Thanksgiving. We were all cracking up. I felt so bad. She was probably wondering why we were all laughing. I think we tried to tell her again and she still didn't hear. But eventually we got through to her. She was very excited to be a Great Grandma again.
Later that day, we called everyone else and told them the good news. Needless to say, it was a very exciting day. One I'll never forget.
Monday, April 14, 2008
No, no, I'm just kidding!! It's so hard to be funny when you're typing!
Actually, I am unapologetically - well, that's not quite true...I'm a compulsive apologizer (one of these days I'll get some therapy for that) - so let's just say I'm well known for being a very persistent chick (sounds better than nagging) to my collegues, my kids, my hubby & my lil sis. When I really believe something is important I won't stop until I get the result I'm looking for. I even annoy myself sometimes. =) Just in case you're wondering, I am currently nagging M about a new scenario which perhaps we'll reveal later on. She's probably thinking "thank God for the miles between us" a saying our Grandmother is supposed to have used often when my Mom was a kid. =)
Back to the real story, I was so excited when M called to tell me she was pregnant! I thought she was pulling my leg at first. After all, I had just seen her for a whole week in Florida! Sure enough though, she started asking me about symptoms & I knew she was serious. Isn't it awesome when you see God's hand so evidently at work in someone's life?! Just when they thought their chance for having children of their own had passed, God showed them who is really in control. Even though I'm sure they couldn't comprehend the plan He had for them at that time they embraced it & continued on in faith! How awesome is that? Their experience has touched so many people, not the least of which is our family. We are behind them 100% & so proud to see all they are doing for their beautiful son!
Anyway, that day M & I had an excited little conversation about "morning sickness" & pregnancy symptoms. Since both of us had experienced miscarriages with our first pregnancies I knew the fears she would be feeling with her second one. How each little difference you feel makes you wonder if everything is okay. Despite that, we were still so excited! This was it! God was answering her prayers! Little did we know that shortly after our conversation, morning sickness would turn into a pregnancy long puke fest for M. I felt so bad for her!! It was the dreaded experience our Mom told us about all our lives. I hope for M's sake it doesn't happen with each of her pregnancies like it did to our Mother. She really handled it like a trooper though!! I know I couldn't have done it & continued working & doing all the things she did during that time. I felt bad bugging her about getting the help the doctors had offered to prepare them for the possiblity of a CF child. It just seemed like a good thing to do to be prepared & informed. I completely understood though why M & Big Chris didn't feel it was necessary. They just felt like it wouldn't matter. If their long awaited miracle child were to have CF they'd take it in stride & figure it out. I admire them for that but...I still nagged...=)
Sunday, April 13, 2008
We'll see how he does tonight. Hopefully it won't be a repeat of last night. If so, I'm calling the doctor first thing in the morning. I'll let you know how it goes.
Saturday, April 12, 2008
You know that meeting I was supposed to have on the 8th with the guy about starting a new Great Strides Walk here in my town? Well, he had to cancel it because he was under the weather. Which I don't mind. I'm actually thankful that he was considerate enough not to bring his germs into my house. Anyway, he said he would call later in the week to reschedule. I haven't heard from him, so I guess I'll give him a call on Monday. I'll let you know how it goes.
I have Great News! I registered for another walk for May 4th. This will actually be our first walk! I'm so excited! I put a sign up sheet up at work, so far only 3 of us are going. Hopefully I can get more people to go. It's coming up pretty soon, and I got a late start on it. If you'd like to join us or donate, you can email me.
Friday, April 11, 2008
He has been sleeping like an angel since that last episode. Thank you Lord! I don't think it is an ear infection. We have an ear infection tester and I tried it in both ears and in said there was no fluid. But who know, that thing could be wrong. He's been fine lately though.
I'll keep you updated.
Ok, now it's on the floor too! He keeps pushing it off the tray onto the floor and then looks at me and smiles. When I try to give it back to him, he keeps pushing it away and knocking it over. So spoiled! Wants Mama to do everything for him ;)
I guess it just worries me, b/c the doctors at the CF clinic said that about 1/2 have slow development issues. I don't know what kind, but maybe these are some...
-can't hold bottle
-doesn't raise arms for you to pick him up
-isn't crawling or walking
-isn't saying any words
-will only eat foods with applesauce in it
I mean, he is only 10 months old (one day older that Susanna's baby ;)
Am I jumping the gun? Or should I actually schedule that in-home visit they are always telling us about? Maybe I just worry too much. After all, that is what my husband always tells me =)
Tuesday, April 8, 2008
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!
D mentioned in her comment that she wanted me to elaborate a little more on my story of when we found out we were pregnant. So here it goes......
My first reaction to seeing the + sign was "NO WAY!!" I think I took like 5 double takes and still said "NO WAY!! It can't be true." We weren't even really trying that month, because I was worried about getting pregnant right before vacation to Disney. I wanted to make sure I could go on all the rides. So I thought, this can't be true. That means that I was pregnant in Disney when I went on like every ride! Of course, I was worried, so I asked D if she thought that it was ok. I think I asked the Doctor when I went on October 18th 2006 to confirm the pregnancy too. The Doctor said I was 6 weeks pregnant. We couldn't believe it still, even though we kinda knew already. She said everything looked fine. I told her that right before our visit was the first time I had thrown up. And in Burger King of all places! So gross!! That was the start of many more mornings and days like that one for the rest of the 9 months. Yuk!
Oh yeah, and some signs that I had that I was pregnant was sore nipples, of course, and my feet would be burning hot in the shower even when the water wasn't that hot. Weird. This stuff only happened less than one week before I took that test, so I didn't think anything of it until I saw the +. Then things started clicking in my head. "Oh, so that's why! Duh!"
So, anyway, at the doctors visit, we were very happy that my blood pressure was normal. When I went to confirm my first pregnancy, my blood pressure was very, very high. They all thought that I was anxious or nervous because it was my first pregnancy. Maybe that was a sign right there that something was wrong with that pregnancy. I had miscarried before my next appointment. So, when my blood pressure was fine this time, we were very excited. We knew the Lord had great plans for the future. Which brings me to the big question the doctor had for us, since she knew that we were both carriers of CF.
"Do you want to terminate the pregnancy?"
Chris and I both looked at each other, not for reassurance or anything, but because we couldn't believe she had asked that question! Of course we said "NO". This pregnancy was the Lord's doing. He obviously wanted us to have this baby. One more month, and we would have ended up adopting or something. But instead, the Lord's plan came into action. And we were ready and willing to take it on, no matter what.
She then asked if we wanted to go for counseling in case the baby was born with CF. We said no. We were going to trust in God that everything would be ok. Looking back now, maybe we should have went. But we really didn't think it would happen to us. Of course, then D started nagging us to go, but you know how well I listen ;) LOL
All the while, we just kept praying that he wouldn't have CF. And if he did, we would take it step by step. And we did.
Can you see where he crawled to in the first pic? That's the first time he has done that! I was amazed! He even pulled the PlayStaion out and started playing with it!
Daddy gave him some chocolate for the first time and he REALLY liked it. His lil' chocolate face was so cute!
For the first time, he got on all 4's for a long time and looked like he wanted to crawl! Daddy even tried to teach him by demonstration. It was hilarious!! Sorry these pics are really dark. I don't have much light in my living room and I was using my camera phone.
Then look what he did the other morning! I still don't know how he did it, but somehow he got on the other side of the bumper and started pulling on the cord to the lamp on his dresser. Luckily, he hasn't done this again since.
The coolest binky closes by itself when it drops! It's a must have :)
Enjoy the pics!
He was fine the next day, just fussy. Again, this morning he has been coughing every now and then. He also spit up a little of his bottle again due to coughing. I know the CF clinic said to wait a week before calling, but I may call sooner if it gets worse. I'll let you know how it goes throughout the week. Please keep him in your prayers that it doesnt' develop into anything and that it goes away.
Enjoy the pics!
Sorry it's so fuzzy, I took it with my camera phone. At least you can hear him laugh every time my husband pushed him. So cute!!
Hope you liked them : )
Lil' Chris has not been feeling good the last couple of days. Not sure why. Maybe he is coming down with something or maybe he is starting to teeth, I don't know he is my first baby. I'll blog more about this later today. Right now I'm starving and I gotta eat before Lil' Chris wakes up. I find it much easier to get him up in the morning and do his CPT when I have a full tummy. If I don't, I can't wait til it's done and his feeding is done so I can eat. Plus, I tend to rush through it with no fun. I like to have fun with his CPT to make it seem not so bad. I try to sing and dance to get him to laugh and take his mind off of it. If I'm starving, I just don't have the energy to do all that and then he ends up crying through it all and trying to turn and get away and push my hand away. That's no fun for both of us. So, I'll go eat some breakfast, get him started for the day, and then I'll blog some more later : )
Monday, April 7, 2008
And to the person out there who has already donated on our A Cure 4 Lil Chris GREAT STRIDES page - THANK YOU! It takes 24 hours for the page to be updated with the "who" information but I did get an e-mail that someone donated & I wanted to let you know how much we appreciate it. Every donation & every person who signs up to walk brings us one step closer to A Cure 4 Lil Chris!! (Now you see why I liked that as a name for our blog) =)
Saturday, April 5, 2008
I can't tell you how much the support of the Cystic Fibrosis Foundation means to my sister, Big Chris & Lil Chris. It provides so much to families of Cystic Fibrosis kids & to adults living with CF! I use cff.org as a reliable resource for information when I have questions or when I want to share with you in my "Let's Learn about CF" series of posts. Their website is awesome & has videos (which I haven't figured out how to embed here yet but I will) & stories that will open your eyes to all that is going in the lives of CF'ers & the world of CF research.
I will be completely honest with you now.... I am the worst fund raiser ever. I have major issues asking people for their time or their money even for things that I really believe in like GREAT STRIDES Walk for a Cure. I'm working on it though... a few baby steps at a time! To that end, I have registered myself, my family & our blog to walk in an upcoming GREAT STRIDES event. My sister-in-law "N" heard from my mother-in-law that I had registered the fam & e-mailed me today to ask why I hadn't asked them to walk with us. Wellll, I wanted to, but I have issues (this being one of many). =) Now I feel a little sheepish for being so hesitant. I am determined to put myself out there & drum up some more support. Thanks N for giving me some confidence that people won't be annoyed or offended if I ask for their support.
So to view our blog's GREAT STRIDES page click this www.cff.org/great_strides/acure4lilchris and check it out! If you live in the area & would like to join us please do! Just click on the Join my Team button at the bottom of the page. If you'd just like to find a way to support the CF Foundation which supports CF'ers like Lil Chris in a multitude of ways every day please donate by clicking on the Donate button. It truly is a worthy cause!!
Thanks for listening, thanks for already showing that you care about CF just by reading our blog!
That's all for tonight! Gotta get up early for church tomorrow morning!
1. The Beginning of it All
2. The Nagging Begins
3. The Nagging Continued
4. The Phone Call
5. Our Options
6. The News
Well, we were both sad about the news that we were both CF carriers, and that we had to stop trying to get pregnant after trying for over a year. I kept thinking, "What if I didn't have that miscarriage in March. Would that baby have had CF? Or would they have been fine?" Only the Lord knows. And I knew the Lord had a plan for us. I just didn't know what it would be until ...
On October 7th 2006, one week after finding out my husband was a CF carrier too ........"WE'RE PREGNANT!!!" I honestly had no idea that I was pregnant! I even took the test without my husband being there, b/c I really didn't think it would be positive! To my surprise, it was positive! I was completely shocked! I didn't know what to do! Of course I had to tell my husband. He was completely shocked too. But we were both very, very, very excited!
Looking back on it now, the thought of CF didn't matter to us at this point. Whether they had CF or not, we would still love them and care for them with all our hearts.
Thursday, April 3, 2008
Anyway, I didn't get to do his CPT! That's what we call the pounding on his chest, back, and sides (chest physio therapy, I think :). I usually do it after his 6:30pm nap, but he never woke up! Should I have woken him up? Or do I let him sleep? Is missing his CPT one time going to really hurt him? I don't know. I hate to wake him. Maybe I'll just do it 3 times tomorrow instead of 2 times. Would that even make up for it? Who knows. This is the kind of things a new cf mom deals with I guess. I'm glad that I have this blog now and can ask those who have gone through this kind of thing before. Please let me know what you would do or did.
Thanks in advance,
Tonight we're going to talk about a day in the life of a CF'er.
I'm sure M will expand on this & give you a peek into Lil' Chris' daily routine after she sees this post. We're Instant Messaging each other right now (LOL) but I haven't told her what I'm posting tonight (we're both engrossed in Tricia's sister Megan's blog - she's really funny & we're both enjoying it). I like surprising M with my posts so she has something new to read when she checks in on the blog too.
On a side note for those of you who live far from family, Instant Messaging is a great way to keep in touch when you're online. Our favorite IM client is Trillian & we just use the free version. Check it out at http://www.ceruleanstudios.com/. Okay fav product plug done... back to our Let's Learn series. As always, my source is cff.org.
Because the severity of CF differs widely from person to person, and CF lung infections flare up from time to time, there may not be a “typical” day. However, each day most people with CF:
Take pancreatic enzyme supplement capsules with every meal and most snacks (even babies who are breastfeeding may need to take enzymes). ( Lil Chris has been doing this since he was diagnosed at 2 weeks old)
Take multi-vitamins. (This too)
Do some form of airway clearance at least once and sometimes up to four or more times a day. (Yup & right now he's too young for the vest so M & Big Chris still do his percussions by hand)
Take aerosolized medicines. These are liquid medications that are made into a mist or aerosol and then inhaled through a nebulizer. (Not yet)
As M has said in her previous posts, Lil Chris is also on an antacid to keep him from spitting up. It is related to his CF but she'll have to explain how.
I'm off to bed now - no working from home in my jammies tomorrow. I have to get up & go into the office on Friday's so sleep time is crucial!
Have a great night & keep on praying for Tricia as these next few days are very important & she has a lot of recovery time ahead of her!
I knew there had to be a way for it not to spray all over, that's why I looked to see if there were any directions. And then after I tried it yesterday morning the way the directions said, I saw Susanna's comment. Thank you Susanna for explaining it to me how you do it and for telling me that it only turns into those little beads. Who knows when I would've figured that one out, since I have no patience. The only thing different in the directions, was to only fill the syringe with 4 ml of water. Then after giving it to him, put 2 ml of water back in and give it to him. That way nothing is left behind I guess. Even though I did it this better way, it still seems to get all over his face. Those little beads don't come off so easy either!
I'll get the hang of it eventually. I was glad to hear that your kids liked the taste, Susanna. Puts my mind at ease. We've gone through so many of the bad ones that it is nice to have a good one for a change. Although, I still prefer the capsules b/c they were much easier. You just sprinkle them on the applesauce like the enzymes, no clean up involved. With the syringe, it's hard to clean all the little leftover beads out. I almost need a special little brush that I can stick down in there and clean it out. But where do you find one of those? Any advice?
As a CF mom, I've read many books and kinda know some of the things Tricia may go through now after her double lung transplant. It's not going to be easy, but she is strong! If she can get through 25+ years with CF lungs, then she can put up with anything! Especially with God on her side, and all of us praying for her : )
Please continue to pray that she has a fast recovery and all goes smoothly. Please pray for the donor family as well. I know they are grieving right now, but once they find out that such a joyous young lady's life was saved, I'm sure it will help relieve some of their pain.
Thanks again for all your prayers!
Wednesday, April 2, 2008
19and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
20Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
Tuesday, April 1, 2008
The fundamental thought process is that dirt & germs are our enemies & if you haven't cleaned it yourself then it's not clean enough. Public places are made to be walked through, not touched in any way if it can be avoided, & public restrooms...well, we won't even go there. If we or our children do have to touch something in a public place then hands must be immediately washed & clothes changed the moment you enter your clean house lest you contaminate it. Yes, I say this to be funny but in truth...this is how I live. And believe me, my Mom still checks to make sure I follow through. =) "D, did the kids change their clothes when they got home from school today?" "Yes, Ma. I made them leave their clothes in the laundry room & get directly in the shower." LOL! If I had a dollar for every time we've had that conversation...
There are days when I wish I could walk through life like other people - not caring about continuing to wear my clothes from work for a while after I get home (did you know your office workstation is probably dirtier than the restroom??? ewww!) or like letting my kids play on the toys at McDonald's without having to hose them down afterwards while thinking about how sick they'll probably be in three days. (my sisters are probably cracking up right now) Or arguing with my husband about how dirty his clothes are when he comes home from work & why he should change. (We've got a kind of Lucy & Ricky thing going - it's a crack up) Being this neurotic takes a lot of work & is very stressful! But it's a requirement in this family.
So now, take that ingrained war on germs & think about it from M's perspective with a CF child. I cannot imagine the pressure she feels. I can only compare it to the pressure I know I feel & then magnify it exponentially. To always be on top of "the germ factor" lest you be caught overlooking something or the guilt we were taught to heap on ourselves when our kids get sick because it must be our fault. I admire her so much for taking all this on without batting an eye & inducting Big Chris into the craziness of the germ war. They break out their anti-bacterial bottle for anyone who comes near Lil Chris. They explain why it's important that people not come near him if they are sick. They are cautious about the places they take him so that he is not unduly exposed. And all while shouldering the pressures of our family's old obsession with germs.
Now, I am not in any way saying that other families of children with CF don't do the same things. I'm sure they do!! My purpose in tonights blog is to 1) get a laugh out of my sisters & maybe some other people who know us well & more importantly 2) to let M & Big Chris know that I admire them for for how they've adjusted & stepped up to the challenge of raising a CF child! Lil' Chris is thriving because of their excellent care & I'm proud of them for what they've acomplished! They love him more than anything & it's apparent in everything they do & every decision they make.
Thanks for listening tonight. Sorry if I got wordy & hope you had a laugh or two! =) D.
They told us to put the tablet into this special syringe they gave us and add water while holding the bottom with your finger so the water doesn't come out. Let it dissolve, then let go with your finger and squirt it in his mouth. Sounds real easy doesn't it? My first thought was, "Sounds like a pain in the butt!" If that's what we had to do, then we were going to do it though.
Anyway, today was the first day we got to try the Prevacid Solu Tabs out. It went pretty much as I expected. Horrible!!
First of all, I had no clue what I was doing, even though they explained it to us.
Second, the stuff doesn't dissolve as fast as you think it would.
Third, I'm not very patient.
Fourth, I don't think it ever would've dissolved, it just turned into little beads in the water.
Fifth, how are you supposed to let go with your finger without it getting all over and put it into his mouth all at the same time? As soon as I took my finger off the top, it started to spray all over! Maybe b/c I shook it a little to get it to dissolve faster ; ) Oh well, better luck next time. We'll figure something out. Maybe tomorrow he'll actually get some in his mouth : )
If anybody has any advice, I'd love to hear it. Especially any tips or tricks ; )
If you ever want to hear more about how Tricia is doing, click on Confessions of a CF Husband on the right side of the page. You may have to scroll down to find it under Our Fav CF Blogs.
Thanks for praying,
I just re-read your story and was thinking that my sister is right! We do have a lot in common! We are the same age and both have a 9 month old CF child. I'm really glad you told your story. It's good to hear someones elses point of view on things. I never really thought of things the way you pointed them out. I hope I never make Lil' Chris think that what he has is soooooo horrible that we would never want to go through that again with another kid. He is such a joy to have around. I wish I could have 2 or 3 more just like him. But I can't help but think what's down the road for them. What's inevitable. I don't know. I like the way you think. You seem to always think of the positive side. I like that. I should start doing that more. Thanks for helping me see a different side. Something I probably never would have thought of. I'm going to think on it. It is something that has definitely been on my mind. I'm glad you brought it up. I'm sure I will write more about it later on.
Thanks again, hope to hear from you soon!
I just wanted to say a BIG THANKS to all who comment. All your words are very encouraging and I love hearing your stories and experiences. Thanks Susanna for sharing your story with all of us. I hope you continue to do so and keep us updated. Anyone else who would like to share their story too, please let us know. We would be more than happy to share them with everyone. Trust me, you feel much better once you get it all out :)
And thanks for all the comments to come =)
I love reading them!
1. The Beginning of it All
2. The Nagging Begins
3. The Nagging Continued
4. The Phone Call
5. Our Options
I remember waiting a little to tell my husband about the call that he was a carrier of CF too, until we were alone out in the hallway in the hospital (plus, I think I was in shock at first). I wanted it to be private so I could give him a big hug and because I knew it was going to make both of us teary eyed. Which it did because we knew what that meant. We had to stop trying to get pregnant and we could never have our own child, our Lil' Chris.
Of course, he was devastated, but we both had to be strong. We don't normally show our emotions in public. He and I are very much alike in that respect. We may have shed a tear or two in the hallway, but then sucked it up and went back in the room and acted like nothing happened. I remember telling my sister-in-law about the call, and later D on the phone, but no one else. It was very hard to speak about it at that time. I acted like it was no big deal, but deep down it was killing me.
It wasn't until we got back to our room where we could finally let it all out. I remember just holding each other crying. We wanted to play the blame game on God, but we are not that type of Christians. We would never do that. We know that all things happen for a reason and that something good always comes out of something bad. You just may not realize it until later.
After about a week, after a lot of crying, we had to come to grips with it. We had to accept the fact that we wouldn't have our own child. I still don't think we ever really did, it just didn't seem right. We were ready for a child, our own child!