My weight gain journey in 2010

Here are the long awaited pictures of my weight gain this year. There is a lot that I could say, but a picture is worth a thousand words....so I'll try to let them do all of the talking. :o)

The journey:

My 29th Birthday (March 3rd)

weight: 110 lbs

With Grandma Myers' at Brenda's graduation May 28th

weight: 119 lbs

family pictures in July
weight: 118 lbs

Christmas 2009

weight: around 112 lbs

Christmas 2010

weight: 125 lbs

Now the last two pictures are astonishing to me. You can really see the difference that 15 lbs makes on someone as small as me. Here's the story: I knew at the beginning of the year that I was really sick and that I really needed to gain weight, but I didn't see (physically see) just how sick I was at the time (because it took all of my energy to cope with the everyday things that I needed to do just to function). We took this first picture on Feb. 28th. It was the first Sunday that I wore full-time oxygen to church. I had bought the red shirt a few weeks before and decided to wear it to church that day to help me to "feel good about myself" in front of others. (I was VERY depressed at the time and I thought the shirt looked really good on me. I needed some confidence in myself to be able to deal with all of the questions/stares/looks that I knew were coming). I only decided to take this picture because I thought I looked good in my "sexy red shirt" and I thought at the time that my full-time oxygen was going to be temporary (well, at least I was hoping it was...) and I wanted to document what I was going through. I had not thought much of this picture again until recently.

As I was trying to decide what to wear to church a few weeks ago and I spotted my red shirt. I decided to put it on and when I stopped and looked in the mirror to make sure that nothing looked out-of-place before leaving the house I realized that I "really did look good!!!" After church I insisted that Curtis take another picture of me in my red shirt and then I compared the two. "WOW!!!" The difference is HUGE! I can't look at these two pictures and not cry because they show so much of what I was and what I have been going through this year. I know that I am a beautiful daughter of God, but I didn't feel that way 10 months ago. Curtis, who has been by my side for over 5 yrs now, was also astonished by the difference in the pictures. He knew that I was really sick, but because it was a slow gradual decline down and a slow gradual climb back up (because he sees me everyday) he didn't realize just how much of a difference 15 lbs made for me until he looked at the pictures. (even at my lowest Curtis has always told me that I'm beautiful and that he's so blessed to be married to me....ahhh, I love him!!! I'm so blessed to be married to him!!!) Ok, I'll stop talking....here is the pictures you've all been waiting for:

Feb. 28, 2010

weight: 110 lbs

December 12, 2010

weight: 125 lbs

Isn't it amazing what 15 lbs does for a person!!! I almost feel like there are two completely different people in those pictures!!! At my December CF clinic appointment they were all very excited to see how much weight I've gained. Even though my lung function has not increased this year, my doctor's told me that I'm the healthiest I've been all year! I would like to gain another 5 lbs, but I'm not in the "critical" stage anymore of needing to gain weight. Most of the year I have been tube feeding 7 nights a week and eating regularly during the day. Now we are cutting back to 4 nights a week w/regular daily eating to see if I still maintain my weight. I'm eating sooo much better than I was a year ago, but I still have days where I just don't feel good and don't want to eat. We'll see what happens...but I'm positive that it will all be good. Even though the decision to get a feeding tube was such a hard thing for me to make, and it's been an up and down roller coaster at times, I'm SOOOO GLAD that we decided to go-ahead with it. I feel so much better physically and mentally. Now I really FEEL like the beautiful princess that I have always been!

G-Tube round 2

Well it's only taken me about 5 months to get this post up, but better late than never right? As you know, this year we made the decision to get a feeding tube put in, in hopes that I would gain weight. I had one placed back in April but had some complications with it and had to have it taken out the beginning of June. So that one only lasted about 8 weeks, but I did gain 8 lbs during that time. (to read that complete story go to my g-tubes pain post in July) After all of that mess, I wasn't in a huge hurry to get the tube back, but knew that I needed to because I had lost a couple pounds and was struggling with eating again.

So July 29th I went in for g-tube round #2. This peg-tube was SOOOO much better than the first one. The GI Dr. drugged me up enough so I didn't wake up during the procedure, which was a HUGE blessing! (I am tough and can handle procedures, but having a tube placed down your throat into your stomach with you awake is NOT a pleasant experience and one that I never want to experience again). Since I was completely out this time, the Dr. was able to find a better place to place the tube and he also made the tube a little shorter. I actually think that a new "spot" for the tube and it being shortened helped my healing time a TON!!! Yes, it was still painful to recover from, but I actually discovered that you don't have to be in pain the whole time you have a tube in your stomach. Round 1, I hurt the entire time when ever I coughed, round 2, I was able to not really notice the pain while coughing about 3-4 weeks after the placement of the tube. Because of the nightmare of round 1 when we switched from the peg-tube to the button (and the ultimate removal of the tube altogether), I decided that I was going to wait at least 10 weeks before converting the peg-tube to a button. I also talked to my CF GI doctor about what G-tube button brand(s) would work best for me and ordered that button before I set up to have the switch made.

16 weeks after getting my 2nd tube placed I was finally able to have the long tube replaced for a brand new button!!! The best part: It looks beautiful and works 100 times better than the first button that I had!!!! It's so nice to have something small and not feel like I have an "extra arm or leg" growing out of my stomach. Now on to pictures....warning, I did take them all myself and they might gross you out a little, but I find the pictures fascinating and I wanted documentation of everything that I have been through to gain weight and be healthier.

This is what my 2nd peg-tube looked like. This picture was taken on November 16th, the last day that I used this tube.

Here is the amazing new button that I have now. It's called an AMT Mini balloon button. The balloon part is inside my stomach and the flat part sits outside my stomach. The side opening on the top is where you put the fluid through for the balloon inside after you place it into the stoma (or hole in my stomach) The purpose of the balloon is to help hold the tube in place and also acts as a seal from the inside of my stomach, although with all of my coughing that I do, I still have some leakage through my site but it's noting compared to what it was when I first got the long tube placed.

Here is my new belly piercing!

Doesn't it look so nice and small!!!

You can also see my battle wounds from the first round.

This should give you an idea about how small my button is.

This is what it looks like when I'm hooked up to it. The best part about this is that it has a lock feature with it. I place the end in and have to turn it 3/4 turn for it to be used. Why is that a good thing? Because when I cough or move around at night the tube connection is not going to pop out of place and leak all over me. They don't make all g-tube buttons this way, but I'm SOOO glad mine has it!

Here is the formula that we are feeding me at night. It's pretty close to the same stuff that we started using but at a fraction of the cost! (Jevity costs $30 for a case of 24 cans, Peptamen costs around $240 for a case of 24 cans....when you do at least 2 or more cans a night and insurance pays $0.00, it gets pretty spendy....)

I asked my personal chef if I could take of picture of him making my nightly meal and this is what I got....good thing I love him! :o)

Adding the second can to the bag....man he sure works hard "cooking for me!"

Priming the tubing. Being the engineer that he is, he discovered that it's faster to prime the tubing by using gravity than by using the pump to do it.

While this isn't totally related....I felt like tube girl when I went on IVs recently. This is me hooked up to my O2, IV meds & feeding tube. Can you tell what each tube is for? It's a good thing my husband still loves me with all of my tubes that I need to keep me healthy!

Coming soon: Pictures of me before my feeding tube journey and now after I've gained 15 lbs! :o)

Getting Practice as a Mom & Dad

I know that this post isn't necessarily in order of all of my other ones...I'm working on updating our blog and this was one post that I for-sure wanted to include. :o) (beware, it's long...but there are pictures at the end)

In October, Curtis and I went down to his sister's house to babysit our nephews for 5 days. Heather & Ben went to Alabama, for a much needed vacation and to celebrate their 10th anniversary. They had asked us when they first started planning their trip if we wanted to babysit and of course we said YES!

The first day was pretty good. Heather & Ben left before the boys got up. Since Spencer (4 yrs old) & Matthew (1 1/2 yrs old) were so excited to see Uncle Curtis and Aunt Sara, I don't think they noticed much. We had lots of fun playing together. The real challenge came when it was time to go to bed. Matthew went to bed just fine, but Spencer didn't want to go to bed. It took us until around 11:30 pm to get him into his bed. That night he didn't sleep much at all, which also kept Curtis and I up too. Bless Curtis' heart, he tried to be the one to stay up and take care of him so that I could sleep, but I couldn't sleep since I could still hear everything and because I was sleeping in an unfamiliar room/bed.

The second day was a long day. We were all dragging since we didn't get much sleep (well, everyone except for Matthew...). We did manage to go to the park and have a picnic and play. That night Spencer struggled to go to bed again, but Uncle Curtis did finally manage to get him in bed and we all slept pretty good that night.

The third day was kind-of a blah day. Spencer wasn't feeling good at all. He had caught the cold that Matthew had earlier in the week, and had a runny nose and a fever. Poor boy, we knew he wasn't feeling well when he didn't even want to play with his Trio blocks and he just wanted to sit in the chair and watch a movie. We all had a nap, (which was great!) and later in the day we were all feeling better. We did manage to get out of the house for a little while. We took a drive to the Oquirrh Mountain Temple and enjoyed the scenery. We would have gotten out and walked around the Temple with the boys, but it was getting late and we still needed to have dinner and get the boys a bath before putting them to bed, so I got out for a couple of quick pictures before we headed out.

The fourth day was Sunday. Amazingly enough Curtis and I managed to get ourselves and the boys ready for church with about 20 min to go before the meetings started. (This was no small undertaking...Curtis and I had to shower & get dressed, I had treatments, we all needed to eat breakfast, get the boys dressed, pack the diaper bag (with food & toys), get my oxygen filled, and get everyone loaded into the van.) I guess you can say that we both learned what we needed to to do work together to make sure that everything and everyone was taken care of. We also managed to make it through the 3 hr block w/out to many problems! That night we had another miracle...we managed to get BOTH boys into bed by 9:30 pm! It was soooo nice! Unfortunately I had a bad night and was up coughing for most of the night, so Curtis and I didn't get to enjoy sleep as much as we wanted to.

The last day we went to the Salt Lake Aquarium with the boys. We had planned on going earlier in our visit, but between being sick/tired and trying to go during a time that was good for both of the boys it just didn't work. It actually turned out to be great that we had waited for several reasons 1) we got the boys excited about wanting to go and 2) it is a small aquarium and there weren't a lot of people there when we went. After the Aquarium and a nap it was time to pick up Heather & Ben from the airport. They boys were VERY EXCITED to see their parents!

Overall this was a great experience for us. Curtis learned a lot (especially since this was his first "big" babysitting experience)! He realized just how much work it is to have kids....and he did a wonderful job!!! Curtis is SOOOO GOOD with kids. I think he is a natural and will make a wonderful Dad someday. At times I felt bad for Curtis because he had to do a lot of the work with taking care of the boys and helping around the house. Of course we worked together, but I learned (once again) what my limitations are. I struggled the most with going up and down the stairs all day long and dividing my time between taking care of myself (doing all of my treatments & not over-exerting myself) and trying to help with the kids, keep everyone fed, and trying to keep the house in some order. Although for me the hardest part was that I couldn't pick up Matthew and hold him or snuggle with him, unless I was sitting down. Despite my health limitations, we managed just fine. Because we had a schedule and the boys were use to my medical routine we all adjusted just fine. Spencer and Matthew still loved treatment time for Aunt Sara. (especially Matthew...he got to the point where I would say the word "treatment" and he would go running and trying to drag me with him to where my stuff was, and then he would insist on helping get all of it ready and making sure that I did it in the right order...it was really cute!) They also weren't afraid of my oxygen, the 50 ft. of oxygen tubing around the house never bothered them, and they knew that before I could leave the house I had to have my "backpack" ready. When we first started babysitting, we both thought that we would be able to keep the house clean everyday and that we would be able to get a few extra things done around the house for Heather. Yep, that didn't happen (which I pretty much knew from the start...but it doesn't hurt to dream right?) We did manage to keep up on the dishes, we had 3 meals a day & snacks, the kids never really fought or had meltdowns, nothing in the house was broken/damaged/colored on etc, and we even managed to get the toys all picked up on the last day and the kitchen swept. Now that is success!!!! :o)

My favorite part of the trip: Spending time with Curtis and watching how he interacted and took care of the boys (and me too). It was very touching to see Curtis around the boys and to see his love for them grow. Curtis' favorite part: Watching the boys discover new things everyday. His favorite moment (that he still talks about) is when he was trying to get Spencer up to bed on Sunday night. Curtis had told Spencer that it was time for bed and that he need to make sure that he had all of his bedtime stuff. Spencer gathered his things and followed Curtis up to bed. While in bed he said "I have my doggie, lambie, Big Bruce (a teady bear) and my drawing board...ahh, Spencer's ready for bed." How cute is that!!!

Here are some pictures of our adventure:

Playing at the park
Wow, look at my shadow!
Uncle Curtis doing a great job playing with both boys

Matthew fell asleep....at least it was relaxing for him

Matthew eating spaghetti

Who needs utensils when you have two hands!

It was EVERYWHERE! All over his hands, arms, belly, face, neck,

in his ears, hair and even in his eyes!

Spencer hanging out while he was sick

My little superman!

One of the many creations that Uncle Curtis made with the Trio blocks.

Spencer examining his "cool" plane made by Uncle Curtis

This is just proof that I was there. I was trying to get a picture with Matthew and I in it, but he only wanted to play with the camera.

Hanging with Uncle Curtis

Matthew has such a serious face...

The Oquirrh Mountain Temple

Spencer saying hello to the octopus and trying to count how many legs he has

Matthew thought the stingray was cool...he laughed every time they swam by him

Spencer thought it was cool too, until one of them came up out of the water a little bit right by him...then it wasn't cool anymore

Since there weren't very many people there, I let Matthew walk around instead of staying in the stroller. He LOVED walking up to all of the windows and seeing the animals.

A lot of the fish in this exhibit were bigger than he is!

This trip was SOOO MUCH FUN! I'm so glad that we got to spend this time with our nephew's. I'm also thankful that they love us too. I'm thankful that even though they don't live close they do really like to talk to us via Skype. I can't wait until we get to spend time with them again! We love you Spencer & Matthew!!!! Oh, and Thanks Heather & Ben for letting us love (and babysit) your boys!

Double-lung transplant

I know that the title of this post has gotten your attention...no, I am not getting a lung transplant. Although, I would LOVE to have new lungs, I still am not "bad" enough to even qualify to get on the transplant list. (more about this later) I heard that someone with CF from the Boise area just had a double-lung transplant done in Denver last week. The story was in the paper (which of course I didn't see at the time because we only get the Sunday paper....), but thankfully I was able to find it on the idaho statesman website. My only real ties to this story are that I did know Brandon from CF camp (about 15 yrs or so ago) and then of course that he is from Idaho and has CF. It's a pretty touching story (for me anyway) and I wanted to share it.

http://www.idahostatesman.com/2010/11/24/1430129/boise-mans-family-friends-grateful.html

Now I'm sure you're wondering about my lung health. Yes, it's been a hard year for me...especially the first 2-3 months. I lost about 10-15% of my lung function in a matter of months (or maybe even weeks). I was put on full-time oxygen and also got a feeding tube to try and help put some weight on me. Since we focus so much on my lung health and not as much on my weight, we were hoping that by gaining some weight it would help my lung health to improve. (I think I explained this when I talked about my feeding tube earlier in the year, I'll check, and if not, when I give a feeding tube update (including pictures) I talk more about it). Anyway, I have gained 12-14 lbs since I got my feeding tube. However, we still haven't seen my lung function increase much this year. From February to June it was around 30%, June and July it was around 36%. In September it went back down into the low 20's, so we did oral antibiotics. I got up to around 33% and then went back down into the mid 20's after having a week and a half off medication. So we did IV antibiotics and after 4 weeks of being on the right medication, I have still only made it up to 30% lung function. We don't know exactly why I lost so much lung function as fast as I did earlier in the year. We also don't know for sure what my "new base-line" is. I think we were getting there, but in the middle of my last treatment winter came in with a vengeance and the cold/flu season has started, so that doesn't help me much at the moment. I believe that we will be able to figure this puzzle out, it's mostly just going to take time (and NOT getting sick from all the stuff that is going around). I'll keep you posted!

Anyway, this has been an emotional roller-coaster for me. Mostly because there are a lot of things that I just can't do anymore because I don't have the energy (or lung capacity) to do them. I have come to terms with all of this, but I still have days (or moments) where it is very frustrating for me because my mind is still sharp but my body just can't do what my mind wants it to do. There have been many times that I have thought about getting on the lung transplant list. We haven't done a lot of research into this, but I do know that each center/hospital that does lung transplants has different criteria for getting on the list. I also know that once you are on the list it could be months or years before you could get a transplant. We do know that even though I have lost a lot of lung function this year, I still don't come close to meeting the criteria. My doctor recently did some "number calculations" in regards to me and the possibility of having a lung transplant. Given my current numbers, I actually have a greater chance of living 5 or more years than if I had a lung transplant right now. This news actually made me feel a little better...no it's not easy right now, but I do know that it could be alot worse for me. So I am thankful for the health that I do have right now.

Anyway, back to the reason why I started this post to begin with...I was SOOOOO excited when I heard that someone I knew received a double lung transplant. I also tend to get pretty choked-up when I read/hear/or watch any story about someone with CF. Having CF is a unique experience that not many people understand. Living with CF you also live with the knowledge that CF is going to shorten your life. So when you hear of someone with CF dying or you hear news about a new CF medical break-through or you read stories like Brandon's you can't help but tear-up and take a moment to reflect on your own life. I'm so happy that Brandon was able to get new lungs and I hope that he is able to use them for 10+ yrs! I also can't wait until the day that CF stands for Cure Found! I hope I live long enough to see that day!

Myers Family BBQ

I don't often write about my Mom's side of the family because we don't often do stuff with them. I love them and wish that we did more with them, but we are getting to be a pretty BIG family so it's hard to get us all together. To give you an idea of just how big let me throw some numbers out: Grandma and Grandpa Myers had 5 kids, then there are 26 grandchildren, and I think the current count of great-grandchildren is somewhere around 30 and growing. (someday Curtis and I will add to that number....) Anyway, Grandma Myers usually tries to have 1 big family BBQ during the summer and most years she has Thanksgiving at her house for whoever can be there. This year the annual Myers Family BBQ was at Grandma's house in New Plymouth during the middle of August. This time I finally remembered to bring the camera. :o)

Disclaimer on the pictures: I DO know who all of my 1st cousins are, but when it comes to their kids names...well, I'm not so good at that. I can at least usually tell you which family they belong to, so I'm not going to try and name them (sorry!!!) Here is a glimpse of some of the family that was there and the fun we have:

My Mom, Sam, Kori (hiding), Kari

visiting and waiting for food
My Aunt Jan, Kari, Uncle Gene, Kody and Kari's husband LJ

Uncle Scott & Aunt Laura and cousins enjoying the nice weather outside

visiting and watching all of the great-grandkids run around

Aunt Cathy & Uncle Steve

Parley brought a cord of wood over to Grandma for the winter. It was a lot of work for him to get it there, but it sure didn't take long for it to get unloaded and piled up for Grandma. Even some of the younger boys were trying to help like the grown-ups. :o)

"Well that was easy"

I remember the days that I use to run around and play around the farm equipment too

This year's entertainment was a game of Annie-aye-over that my cousin Kim

and her husband Gabe started with the great-grandkids.

Grandma's house is PERFECT for this game!!!

Kim's team

waiting...

Gabe (who is also a lawyer by profession)

making up the rules as they go along

(I don't think the younger kids caught on but the adults did...)

I think that Kim's team was able to come back and beat the Lawyer in the end!

Well, I had a really cute picture of one of the great-grandkids giving Grandma Myers a hug, but it just got deleted...(grr!) So, you'll have to trust me that it was really cute! This year we won't be at Grandma Myers' house for Thanksgiving (you can't be at 3 or more dinners at one time), but I am thankful for all of the times that we do get to spend together as a Myers family. I'm also thankful for technology and the internet that allows me to actually keep in touch with my cousins even more than we did when we were younger. They are wonderful examples to me of their faith and strong testimonies that they have of the gospel. I'm thankful for my family!!!

August with the Cahoon's

August for us was a busy month. It started out with me recovering from getting my 2nd g-tube put in. (that is another post for later...). Then we got to spend some time with Curtis' sister and her family. Because Ben was working out-of town, Heather came up to Boise for a week with the kids. I had fun going to the Boise Zoo with Heather, Spencer & Matthew. (we did take pictures, but it was with Grandma's camera because I left mine at home) We also got to play with them at our house and over at Grandma Judie & Papa Chuck's house too. Spencer didn't get to bring his Trio blocks with him, so he was super excited when he got to come to our house and Uncle Curtis had them. We also took the blocks over to Grandma's one day so that Uncle Curtis and Spencer could build together with them for a few hours. (I think they both were in heaven) Having fun building
"I'm building Uncle Curtis"

Cheese

Matthew also wanted to be just like the "big kids"


While Heather was in Boise, Ben flew in for the weekend and we got Cahoon family pictures. (No, Crissie did not take these. She was unavailable at this time, but we had another friend in our ward take them. Greg Bodily works with Curtis in the YM program and he did a great job!) The last time we had taken Cahoon family pictures was when Spencer was about 6 months old, and now he is 4 and Matthew is 1, so it was definitely time for a new picture.

All of us together

A cute, fun, & goofy family picture w/the immediate family

After Heather and the kids were here for a week, I left with them to go back down to their home in Utah to spend a week with them. It was sooooo much fun to be able to spend some one-on-one time with my sister-in law and nephews. The kids kept me entertained and Heather and I had a lot of fun just talking and visiting with each other. (this was the most time that I had spend one-on-one with Heather in the 5 yrs I've been in the family. I throughly enjoyed getting to know her better and enjoyed her company.) I was a little worried about how the kids would handle me being on oxygen all the time and always needing to do treatments, but it never seemed to bother them. They learned quickly how to walk around/over all the oxygen tubing and that I needed to do my treatments and take my medication. After being at the house for about 24 hrs, Matthew (17 months) followed my oxygen tubing to the bathroom and started pulling on my tubing to get me to come out and play with him. The boys also LOVED treatment time (which is good since it was 2-3 times a day). They got sooo excited when I said the word "treatment" and would go running to the bedroom. I think they mostly loved the fact that they got to jump on the bed while I was doing treatments, but the also loved trying to help me get all of my medicine ready and putting on and turning on the vest. Treatment time definitely was not dull and boring for me.

Matthew learning how to work the Vest machine

"Aunt Sara I'm a frog...ribbit, ribbit!"

My cute little buddy!!!

Spencer loves bulding with his Trio's so much, he even builds words with it

(thanks to Word World on PBS)

I LOVE this picture of Matthew. He is such a happy boy!!!

Uncle Curtis joined us Labor Day weekend to spend time with the famliy and also to bring me home. The boys were VERY excited to see Uncle Curtis. (Spencer immediately wanted to build with him when he first walked in the door) They also loved jumping, singing, and playing with their Uncle too. On Labor Day, we all went to the Hogle Zoo. It was lots of fun, but I think that Aunt Sara needed to be in the stroller too. Lets just say there are a lot of hills at this zoo and I was having a hard time walking around because of my lungs and oxygen level. We didn't get to see everything here, but we did see several animals and we also got to watch the "World of Flight Bird Show". Here are some more fun pictures.

Tigers

Penguins

Momma & Baby elephant

Shores' family enjoying the Zoo

This was a big bird (I think it was a type of Eagle, but I can't remember)

Hawk getting ready to fly

Flying over the audience

Aunt Sara & Uncle Curtis enjoying the show & our time with family