Wednesday, January 22, 2014

New beginnings

Our lives this past year

Is the newest addition to our family, and is already 13 months old!  I don't know where the time went!  Joseph has been our little miracle baby and has been a huge blessing to our family!  Both Joe and I felt during my pregnancy that this baby was going to be ok.  We weren't sure that he wouldn't have CF but we both had a feeling of peace that whatever happened, everything would work out according to God's plan.  Thankfully our sweet baby boy has been blessed with exceptional good health.  He is incredibly intelligent!!  I like to think that part of that is because of the natural birth I was blessed to be able to have with him as well as the nursing that finally worked out this time.  He was walking everywhere at 10 months and lets us know in fun little ways that he knows what we are talking about.

I know he is meant to be here now, every aspect of his life has been one miracle after another.   His sisters adore him, especially Hannah.  Joyli gets a little irritated by him sometimes and definitely has some jealousy issues but I know she really loves him too.  His daddy loves having another boy around and that there isn't as much pink around the house now. :)  Mommy can't get enough of her baby boy and I thank God every day for the sweet little miracle that he is!


Joyli is still her sweet spunky self.  She loves Hannah and wants to do almost everything Hannah is doing, but every once in a while is determined to do things when, how she wants to do them.  Her health is another miracle that we have had.  She hasn't had a hospital stay in almost a year now!  I have several friends who have children with CF.  They do their medications and breathing treatments several times a day, every day, faithfully and their children have not been so lucky.  I look at what they have to go through and the serious health issues their little children face and I am reminded at how blessed our little Joyli has been!  Joyli was going to a pre-school at the elementary school but then she caught mono.  At first I didn't send her to pre-school because I was worried that her immune system was down.  But I've decided to keep her home for a while longer because winters and sickness are always hard for her.  The sickness last so much longer for her when she does get sick. She does however still get to see her friends at church and in Joy School twice a week.  I also do pre-school with her on the days she doesn't have Joy school. 

Every time we have a clinic visit at the hospital they do a throat swab and about twice a year she has to get her vitamin levels and other things checked which means doing a blood draw.  The blood draw is her least favorite thing but following close behind is the throat swab part of the visit and every time she ends up in tears.   While we were driving up there this last time she kept saying "but I not sick!"  It made me a little sad because she knows that if she's going up to the hospital she's going to be poked prodded and at the very least have a throat swab.  Every time I am just sure that Joyli has been around something bad and that she is going to need a hospital stay.  And every time, miraculously, her throat swab results come out beautifully.  The last three visits they have said that her weight is ok but they need her to gain some more weight.  I'm even supposed to count all her calories every day.  This last time we went to clinic they were not happy with her weight at all.  Between several tummy bugs, mono, colds, and aversion to almost all solid food she not only didn't gain weight but actually lost weight.  They said we needed to do something quickly.  The suggested getting her back to a speech therapist to try to help her want to eat more solid food or we needed to increase the calories of her night feeds. 

It kind of drives me crazy when people look at Joyli and say something like "what do the doctors know, she definitely has plenty of weight!"  The doctors know, as well as do I, that Joyli really needs to have some extra weight.  First, because when she gets sick (even with a silly cold) the weight comes off incredibly fast!  Second, research has shown that those with CF who are able to keep their weight at 50% BMI or higher live longer than those who don't.  The extra weight protects their lungs somehow.

Hannah is still my little angel.  She is such a sweetheart and I don't know what I would do without her.  As much as I didn't want her to have to be a little mommy she definitely is one.  She cares so much about her baby brother and jumps at the chance to do anything she can for him.  She loves Joyli and is so understanding when mommy and daddy are giving Joyli attention for one of her many needs.  Hannah isn't the type to yell and scream if she isn't getting enough attention.  She lets us know in other ways like having accidents or telling us her tummy hurts.  It's hard to tell with the latter because I know that some of the time she honestly is feeling stomach pain.  We've taken Hannah to Joyli's GI doctor and he has prescribed Miralax and omeprozole every day and that has seemed to help a lot. 

For about 1 1/2 years I've researched "common core" curriculum.  I approached it with an open mind and sincerely searched to know the good and bad of it.  The more I learned the more I disliked it.  In fact the more I researched the more I realized how dangerous is and how much irreversible damage it does, even in Pre-school and Kindergarten.  I have an amazingly talented sister-in-law who homeschools.  I looked at her and thought “there’s no way I could do that!”  I felt like I needed to ask God what He thought.  But the thought of homeschooling was so overwhelming that I approached Him with the attitude of “do I have to?”  Hannah started school and brought home homework every night.  There was a couple of math assignments that I didn’t understand so I showed it to my mathematician husband, surely he could understand this Kindergarten math.  He had no idea what they were asking for either!  I went to talk to the teacher the next day (who I think is an amazing teacher by the way).  I asked her “do they want this or this or that?  She gave me this look sympathetic look of “who knows?!” She told me she would accept any of the solutions we had come up with.  Which I thought was really nice of her, but it’s sad that even the poor, very intelligent, teacher doesn’t know what the confusing common core math book wants!  There was a couple of other things that seemed a little over controlling that I also didn’t like, like the presidential fitness program.  It almost seemed like a threat that if my child didn’t participate bad things would happen.  Don’t get me wrong, I’m all for exercise!  And at the time the kids and I walked everywhere we went every day.  To the school and back, to the park and back.  Hannah is not an overweight little girl, and I didn’t appreciate what I felt like was a “she participates or else” kind of presentation.   I kept researching common core, and my sister in law kept talking to me about all the fun things her kids were doing in homeschool.  She made it sound so easy and so fun!  She sent me a video that talked about CCC (common core curriculum) and then I found a video of a child psychologist talking about the way it destroyed kids in Kindergarten.  I knew CCC did terrible things in the older grades but I had no idea about how much damage it did just in Kindergarten.  Between those 2 video’s, all the other research I had done, and my sister in law being so encouraging and inspiring, I decided I wanted to homeschool.  The only thing left to do was to talk to Joe about it and then pray and ask if it’s what God wanted.  Joe was very on board with me homeschooling, we both prayed about it and got very specific answers. Which I won’t share here because it was so special to me.  God felt strongly on the subject.  So Joe and I knew that homeschooling was right for our family.  

Hannah seems to love homeschool and I LOVE it!  I am having so much fun!  When I imagined myself being a parent, this is what I imagined.  Spending quality time with my kids learning and doing fun things together!  Hannah misses her friends at school L.  But we invite them over to play often and we are going to a homeschool group every week.  The homeschooling group at first didn’t go well.  The first time we went I found Hannah hiding under a table hugging her knees. She said the other girls wouldn’t play with her.  The second time didn’t go well either. Hannah really did try to make friends but one little girl wouldn’t talk to her at all.  However, the third time we went we had a break through!!  Hannah I think was done trying to make friends and she went and hid in a tree.  Then some sweet little girls went and talked to her!  Hannah shot them down unfortunately and they went away.  A few minutes later, I saw the two little girls again come back with bouquets of red, orange, yellow, and green leaves.  They gave them to Hannah, I’m not sure what Hannah said to them but they went away again and Hannah was still pouting in the tree.  Then these beautiful little girls came back a third time!!!  Finally, Hannah stopped pouting, got out of the tree, and started playing with them.  She was all smiles that day.

This picture is of our "Homeschooling room" in November.  The big tree is our "thanksgiving tree".  We got to put what we were thankful for on our hands/leaves. :)  

Our Homeschool room in December

Hannah's 6th Birthday Party (Rapunzel Party)

Joe:  Joe is doing great and working hard in school.  He was invited by his professor to be in the national honors society Chi Epsilon.  They are having the national conclave in SLC this year and Joe is chairman of the field trip committee.  He has to prepare 6 different tours and find transportation for 300 people.  I’m very proud of him!  He currently has the opportunity to work helping his older brother who is handicapped.  I think it’s his most favorite job that he’s ever had.  I love listening to them laugh together!  Joe’s church calling is working with the 12 and 13 year old boys.  99% of the time he loves it!  The other 1% he is a little frustrated with their… high activity levels… ;)  But every time he comes home from an activity he has a huge smile on his face. 

Joe is an amazing father and husband!!  Sometimes I am so depressed and overwhelmed and then he comes home from school and my sunshine is back.  He bends over backwards and loses sleep trying to help me with my “to do” list and with his task list.  He always makes time for all of us and the kids and I love and adore him! 

Baby in one hand and a mop in the other, that's my man!! :)

When I found out I was pregnant I was both happily ecstatic and terrified.   Something that has been important to me but has never worked out for one reason or another is breastfeeding.  I tried for months and months with the girls and then gave up and pumped.  I HATE pumping.  I knew I couldn’t do that again.  Breastfeeding was either going to have to work out with Joseph or he was getting formula.  Joe and I agreed I would try for 1 month and then that was it.  I got the book “The womanly art of breastfeeding” by the La Leche League.  I love that book because it put everything together for me so that it all finally made sense.  The book was talking about how epidurals can make the baby very sleepy.  That was a HUGE problem with my girls.  I tried EVERYTHING to keep them away while nursing and nothing was very effective.  My girls were also 3 weeks early and now I know that even though the Dr.s consider that full term those 3 weeks are very important in a babies development.  The book suggested natural childbirth.  I just about threw the book away when I read that.  Natural childbirth NO WAY!  I’m not stupid!  Why be in pain when I don’t have to be?!  But I kept reading and the more I read, I knew it made sense.  The suggested different ways like Lamaze, and Hypnobirthing, and others, but the one I chose was “The Bradley Method of Husband-Coached Childbirth”.   I loved having the idea of Joe being my coach.  I decided to go to the classes and if they could talk me into going through with a natural childbirth then I would.  I loved my teacher and I loved the information that I learned!  If anybody is interested in the birth story let me know and I’ll send it to you. But right now I’ll just say it was one of the best experiences I have ever had!!!  Joseph is 13 months old and we are both still loving nursing!

I loved it so much I decided that I wanted to teach too!  My teacher had so many couples in her classes and I know she had to turn some of them away.  Becoming a teacher was a pretty large monetary investment because there wasn’t any training classes in Utah.  We both prayed about it and felt like this was a good thing for me to do.  After I came back from the training I felt a little overwhelmed by how to get started.  But I’m determined to finally get started.  Feb 20 will be my first class and hopefully I’ll have some couples to teach! J 

My church calling right now is Primary secretary.  I never knew how busy secretaries were!  I am overwhelmed sometimes but I think the kids are adorable and I love being around them!

I've been feeling like a mean mommy lately. So I asked for help from "Families First" again.  The lady who came a few years ago helped all of us immensely!!   Basically, they come in and just watch, then they give help where ever they can.  They help me learn how to parent and discipline/teach effectively without hurting my children's self esteems.  My girls are already happier and more obedient with them being here.  I told them that trying to keep things organized is a big stress for me.  Joyli's medical supplies were not very organized.  This is what those beautiful ladies helped me do!

Tuesday, May 31, 2011

The good, the bad, and the ugly

Thought I would update...

It's been quite an interesting few weeks. Joe is applying for both math and physics teaching positions around the state of Utah, but we have our hopes set on a physics position in Park City UT. It would be out of the smog that is so bad for everybody's lungs, but especially on Joyli's. It's a beautiful city, and there might be the possibility of renting a beautiful home for a price that we afford. My mother in law, Marie knows someone who has a lot of influence in Park City. Joe met with her and she is taking Joe's resume, and letters of reference's to the principle personally. Joe was given amazing references!!

Joe is loving his calling as assistant scout master. Every week when he goes out on an activity with the scouts and young men he comes back smiling and in a really good mood. :)

Hannah is full of curiosity. And loves to show how much she loves her little sister by hugging and kissing her. However, sometimes she does it so much that she knocks Joyli over. ;) She is a very sweet girl with a very loving heart. We sure are having problems as far as potty training goes. It's so frustrating... When she was 2 she was using her potty all day long! It seems like everything changed when Joyli went in the hospital for a few weeks for a clean-out and Hannah went to daycare for a month. It's been drama most of the time since then as well. I'm wondering if it's effecting Hannah more than I realize. I've tried every bit of advice that I've received about potty training her, but nothing has worked. I've tried stickers, candy, charts, pull ups, training panties, real panties, big toilet, small toilet, potty watch, praise, applause, teaching her dolly how to potty train, peer pressure (all her friends are potty trained now!)and saying "you must be so proud of yourself, you did it!" I think when people tell me that she'll potty train when she is ready mean well and are trying to help me feel better, but I think the idea of it is total crap! She'll NEVER be ready. I recently got a book called "potty training in one day". It got rave reviews from thousands of parents. It is so hard for me to find the time to read it. (I'm also working on another book "Christlike Parenting") From what I've gathered so far, you have a big party. The author feels that some kids never "want" to use the potty. Why should they they have a bathroom wherever they go and mom and dad's extra attention when they need a diaper change. I'm really hoping that the thousands of other parents are right about this book, because it is my last hope!

Joyli somehow get's cuter every day. She's into everything! :D She toddles around everywhere. It's so cute. She has the cutest mannerisms. She stomps her little fat feet and flaps her hands and arms and squeals when she's super happy, which is often. :)

Last week her g-tube was ripped out of her stomach. That was scary... it's so weird/terrifying to see a bloody hole in your baby's stomach. I screamed for Joe and together we got the emergency button in about 3 minutes or less. We called the GI doctor on call and she said to watch out for bleeding, vomiting or fever. In the morning Joyli was vomiting. I called the surgery nurse and she told me to bring her up to Primary's. Our car was in the shop. I didn't have a car or a babysitter for Hannah. Joe's work has been really slow since it's the company's off season and they're moving to a new location. They have been asking people to voluntarily take of work for a few weeks. So Joe came home from work for this one day. By the time he called me to tell me his boss didn't mind him taking off I was at the point of panic. Joyli was not acting like she usually does. She's usually walking around, smiling, giggling in the mornings. That morning she was not smiling, listless and just laying there. Even when she's in the hospital and really sick she'll smile! So I knew something was really wrong. I used the car that Joe was using (our parents car) and started to drive Joyli up to Primary's.

On the exit to foothill blvd, I got in a car accident. There was a yield sign that I stopped at so one car could pass by, I waited to make sure nobody else was coming and then started to go. I have a feeling that the guy in front of me wasn't paying attention and that's why he didn't move when there were no cars coming, because he had plenty of time! But unfortunately, I wasn't paying attention either and tapped his bumper. I didn't see any damage to his bumper and thought that maybe he would just keep driving. But he pulled over so I did too. We both got out of our cars and I went to take a closer look at his bumper. I didn't see anything and said "do you think it's o.k.?" Then he pointed to a extremely small scratch about a centimeter long. I had to put my nose right up to it to be able to see it. The amount of damage to my parents car was a dented license plate. He said "maybe we should exchange insurances. I thought, whatever, I'll just quickly give him my insurance info and then I can Joyli to the hospital. He asked me where I was going. I told him I was taking my baby to Primary's. He said "Oh, I'm sorry."

Then next thing I know, he called the police, he called everybody. I don't get it! It wasn't like this was a new car! It was an old 1991 Honda Civic. The tiny scratch that I could hardly see could have already been there for all I know. I was taking my sick baby to the hospital, couldn't he have had a little compassion!! The policeman was very nice. When he went to look at the damage to the guys car he had to bend over and get his nose right up to it to see the scratch. I took a picture of the other car because I wanted proof that their was nothing there! As the policeman walked away and towards the police car, I swear I saw him smile and roll his eyes. I think he thought it was as ridiculous as I did.

My baby was in the back not moving except to moan and cry a little bit. It was the type of cry that she does when she doesn't have the strength to really show how horrible she's feeling. She does that type of cry every time when she comes out of surgery. I was sobbing like an idiot. I was angry at myself for making such a stupid mistake, I was angry at the stupid 30 year old guy who was making this huge fuss over a scratch that nobody could hardly see. And I was extremely worried about my daughter who was acting so sick. I've never seen her act like that before. I tried to stop crying when the cop came around to check on how far I had gotten on the paperwork. Which wasn't far since I had to call our insurance and get our policy # and all kinds of information since I had left our insurance card in our car. This cop was so nice! I explained to him that my daughter had had her g-tube ripped out the night before, was vomiting, and they wanted to see her at Primary's asap. He filled out my paperwork for me while I was on the phone with the insurance. The policeman kept apologizing that because it was an accident, by law he had to unfortunately give me a ticket. But he really seemed like he hated to do it. That made it easier.

The other guy left and I tried to start the car... the battery was dead. I lost it again, and ran back to the cop car before he left and asked him if he had any jumper cables. He said he would call someone who did. The policeman stayed there the whole time to make sure I was o.k. and then he assisted the truck that came. The car started right up and I went to Primary's. I called later and the ticket is going to cost us $120! Someone has hit our car twice and ripped off the drivers side mirror. They NEVER left a note saying "sorry I hit your car, here's my insurance." The first time it cost us $150 to fix the mirror. This time it's going to cost us almost $400!! Some idiot doesn't have the decency to be honest when they damage my car and I have to pay $550 for it. I try to be honest and pull over when I tapped this guys bumper for maybe $10 of damage (if he really wants to bother to get paint to cover up that little one centimeter scratch) and I get a $120 ticket! It's just not fair!

Any way, at Primary's the surgery nurse saw that Joyli was not doing well. She had the doctor personally escort us to the ER. We were in the ER for 9 hours (we're usually there at least 8 hours every time we go.) They did all kinds of tests, and discovered that she was severely dehydrated. When they poked her to get the IV in she didn't move, she didn't cry, she just laid there staring. She spent about 36 hours on IV fluid and then she was well enough to go home. The morning of the day she went home they needed to get some blood. 3 different people stuck her each two times and were all unsuccessful. Finally on the 7th poke they were able to get some blood. And it's never just a poke, they have to go in there with the needle and feel around for the vein with the needle. I've had that done to me enough times to know it hurts!

Joli is doing a lot better! The only thing that I'm worried about now is her cough. She started this terrible cough a little over 2 weeks ago that they were hoping to treat without antibiotics. Because when she gets done with any antibiotic she has severe diarrhea for 3 months (10 outfits a day and at least 5 baths daily). So we started hypertonic saline and more treatments. One week later her cough was horrible!! It was worse than the time she had pneumonia. So they gave in and knew that she needed antibiotics. They have definitely helped... but the cough is still there. I worry that it's going to get worse and we're going to have to try stronger antibiotics. Does that mean weeks in the hospital for a clean out? Does that mean a month of Toby (that's the $10,000 mega antibiotic) at home? That would add to the hours of treatments we already do. I don't know what I would do with Hannah if Joyli had to go in for a clean -out. The doctors have mentioned it... we'll see. The fact that her compressors never work might be contributing to her lung problems. Our 8th one just broke today!!! It completely stopped working and absolutely no steam was coming out. The respiratory therapist at Primary's said that they have gotten a lot of complaints from parents about the Pari Vios compressor. They have the parents bring in their nebulizers and they hook them up to the wall compressor at the hospital and they work fine. But when they hook it up to the Vios compressor it doesn't work. I am so frustrated. I've done everything they have suggested to fix possible reasons of why they stop working. But they're still breaking somehow. It seems like they just decide to to not put out very much air one day.

I'm sure life will be calm someday. The dear sweet retired sisters from my ward act like it's the greatest part of their week to come do Joyli's treatments. I am so grateful for them. I'm so grateful for the beyond wonderful family and friends that do SO MUCH to help us!! Our burdens are so much lighter because of you!! I'm grateful to an impossibly amazing husband! His Christlike charity never ceases to amaze me. He works hard all day then comes home, job searches, helps with the girls and does treatments so often for me!! I am especially grateful for a loving Heavenly Father. I can see His tender mercies every day, even on the especially hard days. I am very blessed.

Sunday, January 30, 2011


Warning Blasphemy coming... "Dear God, I've decided I'm done with the depression and the cystic fibrosis, I can't handle it any more, so you can have them back now, I am just done. Thanks"

I know everyone means well, and I really appreciate the concern, but please stop asking me if I'm o.k. because I'll just say yes. And truth is, I am drowning. I get out of bed and I take care of my husband and my girls, and that's it. AND THAT'S A LOT! I make sure they are fed, I make sure they have clean clothes (even if they are wrinkled). I make sure the girls have clean diapers and get their teeth brushed. I make sure all of Joyli's nebulizers, spacers, binki's, suringes, bottles, rings, nipples, spoons, g-tube extention, and supplies are all washed and sanitized every day. I make sure she gets her Albuterol, and CPT twice a day and Pulmozyme once daily. I hook her up to a machine every night to help her get more food. I clean up the vomit that happens several times because her tummy can't handle the g-tube. I make sure that we jump every time Joyli's Dr.'s say jump and they've trained me to ask how high. I make sure the endless paperwork for insurance is kept up on because who can afford $200,000 a year? I make sure that all prescriptions never run out, because that would be very bad.

Our living space is a disaster 95% of the time. I think I'm about a few months behind on laundry. My family is living on t.v dinners and it's a good day if I actually get a shower, brush my hair and get dressed. Don't judge me. You haven't been in my shoes, you haven't had the same experiences I've had in my life. I am doing the absolute BEST that I can! The depression in so bad. This CF is such an absolute HELL!! I HATE IT!!! I hate having to beg my parents to sit with my daughter in the hospital because I just can't handle it any more. What am I going to do when she's 10? Say "Sorry kid, you have to stay here in this nightmare for a few more weeks but I'm leaving because I can't handle it?" Joyli's been in the hospital so many times I've lost track. I counted up to her 7th stay in the hospital when she was 5 months old, but she's been in there so many times since then I've just been too busy and stressed to remember to count them all.

One of my favorite books in the whole world is a childrens book someone gave us on one of Joyli's stays at Primary's. It's called: "I knew you could" by Craig Dorfman

It's of course about a train and some of my favorite words from the book are these:

"You'll go through tunnels, surrounded by dark,
And you'll wish for a light or even a spark.
You might get scared or a little bit sad,
Wondering if maybe your track has gone bad.

So here's some advice to help ease your doubt:
The track you took in must also go out.
So steady yourself and just keep on going-
Before you know it, some light will be showing.
And then you'll be out, heading to a new place.
You'll be ready for the next tunnel you face.

Sometimes you'll look up and see planes in the sky,
And you'll think to yourself, 'I wish I could fly'
The cars on the roads will seem quick and free-
you'll feel stuck on your track and think, 'I wish that was me.'

But the plane might wish he could get out of the air,
Saying 'I wish I could travel like that train down there.'
The cars will watch as you speed right along,
And they'll say to each other,
'Look how fast and how strong!'
Don't worry about not being a care or a plane,
Just enjoy the trip you'll take as a train."

It is so dark right now. I wish that light would come soon.

Sunday, January 9, 2011

Daddy's gift: A Very Special Christmas

The plan was to put up Christmas decorations right after Thanksgiving... but life is complicated. A few days before Christmas I figured we wouldn't have a Christmas tree and would try to at least have a clean area for Christmas. I hired a wonderful friend for a few days to come help with Hannah, so I could focus on cleaning and errands. I only did errands and that took all my time. Part of the errands were picking up Christmas presents and delivering cookies as thank you's to the families who come every week to help me with Joyli's therapies and treatments. As I delivered the cookies I saw their beautiful Christmas tree's in their windows. A twinge of selfish sadness was there every time I saw one. There are people who didn't get to see loved ones this Christmas for various reasons and I'm whining about a dumb Christmas tree. I know, I'm selfish. When I came home Christmas eve from errands I discovered that my beyond amazing, fantastic, wonderful, husband took it upon himself to clean EVERYTHING! He made it look beautiful! Not only that but he had set up the Christmas tree!!!!!!!!!!!! I almost burst into tears! Hannah and I decorated the tree together with the lights and decorations that "pa pa" and grandma had. And daddy got to put the star on top (a star ornament that my visiting teacher happened to give me.)

To further demonstrate how special this Christmas tree was: Hannah had been asking for a pillow pet for at least 6 months. And finally on Christmas she opened up her very own bumble bee pillow pet! Finally the toy she had been asking for for over half a year! The next day at church several adults asked Hannah how her Christmas went, they asked her what presents she got. I thought she would tell them all about her pillow pet or princess table, or her new dolly. But she never said a word about any of those things to anybody. She very excitedly told every person only one thing "I have a Christmas tree in my basement!!!!!!"

We were very blessed this Christmas. The Lord has been very kind to us to bless us with such amazing, kind, charitable parents and family. Thank you to them. We wouldn't have made it without you.

I would like to thank everybody who had family serving their country and sacrificed this Christmas without those loved ones. Thank you for your sacrifice. May the Lord bless you.

Tuesday, October 12, 2010


Joyli had an appointment with her tummy Dr. yesterday. He said her weight has "flat lined." He also said that if she doesn't gain enough weight in the next 3 weeks he is going to put a G-tube in. A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach.

He gave her a stronger form of medication to try to get rid of the C-diff. He want's me to give her more solid food. However, the CF Dr. wants me to give her more formula and only a few teaspoons of solid food a day. She says that formula has more calories and nutrition. The tummy Dr. also wants me to give her ice cream. I thought you weren't supposed to give any baby any dairy before a year old. She's on Alimentum because any time I give her a formula that has any dairy in it she vomits for days. So giving her ice cream makes me nervous for several reasons.

The GI Dr told me that if we don't get Joyli's weight up it could have long term effects on her respiratory system. He also told me that 30 - 40% of CF patients have G-tubes. He says it doesn't greatly limit their activities and they can even go swimming and play soccer with it in. Having a tube and tiny balloon go into my baby's stomach still sounds a little scary to me. I'm going to do everything I can between now and the next 3 weeks to get her weight up.


Joe and I woke up one morning to Joyli throwing up all over her crib. I didn't think much of it until I noticed that the color was green with black specks. I've been told ever since we found out about her intestinal malrotation that bright green vomit was a situation that we needed to go to the ER for and to call the Dr. before we arrived so they could contact the ER and let them know she needed to be seen right away. So when I saw what the Dr.s described I freaked out. We called the GI Dr. and he told us that both the green vomit and the black specks were something they would send us to the ER for. Joe watched Hannah and I rushed Joyli to the ER.

They found that she didn't have a blockage in her intestines that would cause a blood clot, but that she did have Pancreatitis. The way to fix this was by not letting her eat. My poor sweet baby went without food for 2 days. After that her blood tests showed that the pancreas inflammation had gone down. They slowly added food back to her diet and on the 3rd day was able to go home.

The Dr. doesn't think she will get pancreatitis any more because 90% of her pancreas is scarred and not working. I guess you can't get pancreatitis if you don't really have a pancreas to get it with. The pancreas is supposed to produce enzymes that help digest food and thereby getting the nutrients from the food. Joyli's doesn't do this, so she takes pancreatic enzymes before every meal. We are hoping that she won't get Cystic Fibrosis Diabetes when she's older.

I need to thank my mothers. I can't believe how blessed I am!!

On the day I took Joyli to the hospital Joe came down with this horrible flu. He's still taking antibiotics and trying to get over it a whole month later. When I came home from the hospital my sharing husband gave me the flu. We laid in bed dying while healthy Hannah jumped and danced around us. My sweet amazing mother in law took care of Hannah, and brought Joe and I breakfast, lunch, and dinner in bed. All while taking care of my sister in law's children who was in the hospital having a baby! Thank you to my sweet and caring mother in law!!!

My mother offered to stay with Joyli over the weekend. This was a blessing for several reasons. #1. I had Joe's flu and could hardly move anywhere, let alone take care of a baby. Reason #2. Being in the hospital with my daughter is one of the most horrible things that is on the top of my list of things I hate the most. The first week she was in the hospital for her surgery was a living Hell!! When she's there I feel overwhelmed at how many Dr.'s see her for all of the multiple problems that she has and that they seemingly most of the time don't talk to each other. So every Dr. wants something different and my daughter is left suffering while they hum and haw over what she really needs. It's so FRUSTRATING! And when I say "enough!" they all look at me like I'm the crazy, psychotic mother that expects too much. I can't stand to be there in the hospital while the Dr.s play Guinea-pig with my daughter, but I can't stand to be away and trust that everything will be o.k. either. I do however trust my mother to stay with Joyli, because she is a caring grandmother who loves her granddaughter and because she's an RN who's not afraid to speak up and say "excuse me, I think you might be doing that wrong". I know this is selfish, but I wasn't ready to be back in the hospital with my daughter and those Dr.'s that I know really are trying to help. I'm so grateful for my mother who spent so much time with Joyli her 2nd time in the hospital and again her 3rd time in the hospital. Even after a day the hospital walls seem to close in on you and Joyli's crying and the Dr.'s not doing anything about it gets unbearable to take. For my mom to do it for so many days makes her a hero.

Several people helped me so much during Joyli's 2nd hospital stay when she was there for weeks. My sweet step-mother also stayed with Joyli for several days and a wonderful stranger (I hadn't met her yet) from our new ward stayed with Joyli for a few hours while I was in the temple as my grandparents were sealed together. I was able to do that work for my grandmother. What an honor and blessing! And how amazingly blessed I am to have so many Christ-like people in my life, bending over backwards and turning their lives upside down to help my family and I. I don't know how I'll ever repay everyone or even begin making this up to my Heavenly Father and Savior. But, I'll always look for ways to try.