Tuesday, October 27, 2009
Monday, October 26, 2009
Thank Goodness for Janice
My little sister Janice was super sweet and dropped everything to come and help me while Nathan was in the hospital. She's a very go-getter kind of person and she helped get my house back in order along with doing some badly needed projects.
Here is what we did:
Finish putting together Nathan's room with the BYU banner, pictures, and a growth chart.




She also helped me redo the bar stools to add a better fabric and a protective cover to them. I loved the way they turned out!



We scrubbed the whole house, got all of the laundry done (the amount of laundry I had to do could have sent anyone into a serious depression), the bathrooms truly scrubbed like they should be, labeled my food storage, and installed a new dishwasher. Yeah, our junky cheap dishwasher quit working a couple of months ago and so Janice took me to get a new one and Tammy's sweet husband Ben installed it for us. Its amazing what a working dishwasher can do to help keep a kitchen clean.
I have the best little sister in the world. Thanks Janice for all of your help!
Here is what we did:
Finish putting together Nathan's room with the BYU banner, pictures, and a growth chart.




She also helped me redo the bar stools to add a better fabric and a protective cover to them. I loved the way they turned out!



We scrubbed the whole house, got all of the laundry done (the amount of laundry I had to do could have sent anyone into a serious depression), the bathrooms truly scrubbed like they should be, labeled my food storage, and installed a new dishwasher. Yeah, our junky cheap dishwasher quit working a couple of months ago and so Janice took me to get a new one and Tammy's sweet husband Ben installed it for us. Its amazing what a working dishwasher can do to help keep a kitchen clean.
I have the best little sister in the world. Thanks Janice for all of your help!
A Trip to FYZ (Forever Young Zone)
One of the best parts of Primary's is the Forever Young Zone. On Wednesday, Janice & I took Nathan for a little trip in a wagon over there to play. He loved the Thomas the Train and also loved just riding around in the wagon. When Nathan first got up to walk he looked as if he had never taken a step before. Shaky as he was he got right back up and tried again. That is very symoblic of Nathan's attitude/approach to life thus far. I realize he doesn't know life any differently, but I could never have endured what this little guy has had to suffer through.




Nathan's Coping Mechanism in the PICU



If I had to sit in my bed all day long being poked and prodded, I'd try to find something that I liked to pass the time too. Thankfully I'm past my thumb sucking stage, but from this picture I'm guessing that Nathan will keep this up until at least 4th grade. These pictures were taken the day after his surgery last week. He's such a cutie!
If you look closely you'll see that Nathan had his IV in his right thumb. The IV went bad later that evening and they had to stick it in his left thumb instead. It was hard to see him screaming for an hour signing "ALL DONE" frantically with his free left hand. He was pretty upset that they took his favorite thumb to suck on too!
Friday, October 23, 2009
We're Home!
What a crazy couple of days in the hospital! Nathan has done really well this time, and the best part is that the doctor DID NOT have to redo his nissen! He told me that this has happened only a couple of times (2) in the past 5 years with patients like Nathan and that he has had do a couple of hundred of them.
Anyway, Nathan is home and doing well. We got home yesterday afternoon and as soon as Ellie got home from preschool, Nathan was SO EXCITED to see her. He was happy to see Dad, but Ellie is the main focus in his little world. He kissed her several times and giggled as he tried to chase her. I don't know if we'll have more children or not, but there is a pretty special bond between Ellie & Nathan. Nathan just adores his sister.
As far as the echo went, it did get done and the results were read to me yesterday. Nathan's heart has gotten a little bit bigger than last time in the right ventricle, the pulmonary valve is pretty leaky, and now his tricuspid valve is also leaking. The tricsupid valve is likely leaking with the change in pressures from the right ventricle. The tricupsid valve issue is not an original defect in his heart and has been added to the Tetralogy of Fallot issue. The echo report stated that Nathan has severe pulmonary insufficiency.
Cardiology said that I have to remember that Nathan's heart is "fixed" to the extend that they are able. This does not mean that problems don't exist anymore. Its just going to be a life long issue that is not going to magically go away (as much as I would like to). Still, its hard to read those words: SEVERE PULMONARY INSUFFICIENCY.
I need to make a call to the sleep doctor's department (Dr. Daftery) to see if there is anything in addition to the oxygen that should be done for Nathan. I'm a little nervous to make the call because the doctor's always seem to find just ONE MORE THING.
We appreciate the thoughts and prayers for Nathan this week. This has been one of his best surgeries to recover from. In the next day or two I'll have to download the pictures showing Nathan's coping mechanisms in the PICU and the cute puppy that came to visit him again the in the hospital.
Anyway, Nathan is home and doing well. We got home yesterday afternoon and as soon as Ellie got home from preschool, Nathan was SO EXCITED to see her. He was happy to see Dad, but Ellie is the main focus in his little world. He kissed her several times and giggled as he tried to chase her. I don't know if we'll have more children or not, but there is a pretty special bond between Ellie & Nathan. Nathan just adores his sister.
As far as the echo went, it did get done and the results were read to me yesterday. Nathan's heart has gotten a little bit bigger than last time in the right ventricle, the pulmonary valve is pretty leaky, and now his tricuspid valve is also leaking. The tricsupid valve is likely leaking with the change in pressures from the right ventricle. The tricupsid valve issue is not an original defect in his heart and has been added to the Tetralogy of Fallot issue. The echo report stated that Nathan has severe pulmonary insufficiency.
Cardiology said that I have to remember that Nathan's heart is "fixed" to the extend that they are able. This does not mean that problems don't exist anymore. Its just going to be a life long issue that is not going to magically go away (as much as I would like to). Still, its hard to read those words: SEVERE PULMONARY INSUFFICIENCY.
I need to make a call to the sleep doctor's department (Dr. Daftery) to see if there is anything in addition to the oxygen that should be done for Nathan. I'm a little nervous to make the call because the doctor's always seem to find just ONE MORE THING.
We appreciate the thoughts and prayers for Nathan this week. This has been one of his best surgeries to recover from. In the next day or two I'll have to download the pictures showing Nathan's coping mechanisms in the PICU and the cute puppy that came to visit him again the in the hospital.
Monday, October 19, 2009
Wouldn't An Uneventful Surgery Have Been Nice?
Kath & I decided to go get some lunch at the University Cafeteria instead of the good ol' Rainbow Cafe. While we were gone, I got a call from the cardiology receptionist saying that they hadn't received the orders for Nathan's echo and so they wouldn't be doing it today.
WHAT THE !*%@#$
Kath & I ditched our lunches and raced back to Primary's to go talk to the right department. I called the ENT first whose nurse said it was the sleep doctor who was supposed to send the order. I went to them and then they said they couldn't find that he ever needed one. I told them our plight and that Nathan was almost done in the OR. They called the charge nurse for the hospital and she then went with me to talk to the underpaid and under appreciated receptionist in cardiology. The receptionist was very MATTER OF FACT. That's when the charge nurse went and paged Dr. Park in the ER. Dr. Park came right down to talk to the nurse and gave the verbal go ahead for Nathan's echo.
The sleep doctor's department said it was cardiology's fault, ENT's nurse said it was the sleep doc's fault. Dr. Downey's office set up the echo, but said it was the ENT's job to send the echo order.
Do you see a pattern of pointing fingers and not taking responsibility?
I can't believe that someone in the chain dropped the ball and that Nathan almost got a separate trip to the OR just for a sedated echo. Everyone at Primary's works as a team, but no one wants to fill out the right paperwork. Good grief.
And the thing that made me the most upset? While I was downstairs chasing down the right people to get the echo done, Dr. Downey came searching for me in the surgical waiting area and I wasn't there. The receptionist assured me that Dr. Downey would come and look for me, but I want to know what happened now instead of in 3-4 hours when the doctor is done with a different surgery.
I have never been so infuriated at this hospital in the last 21 months as I have been today.
WHAT THE !*%@#$
Kath & I ditched our lunches and raced back to Primary's to go talk to the right department. I called the ENT first whose nurse said it was the sleep doctor who was supposed to send the order. I went to them and then they said they couldn't find that he ever needed one. I told them our plight and that Nathan was almost done in the OR. They called the charge nurse for the hospital and she then went with me to talk to the underpaid and under appreciated receptionist in cardiology. The receptionist was very MATTER OF FACT. That's when the charge nurse went and paged Dr. Park in the ER. Dr. Park came right down to talk to the nurse and gave the verbal go ahead for Nathan's echo.
The sleep doctor's department said it was cardiology's fault, ENT's nurse said it was the sleep doc's fault. Dr. Downey's office set up the echo, but said it was the ENT's job to send the echo order.
Do you see a pattern of pointing fingers and not taking responsibility?
I can't believe that someone in the chain dropped the ball and that Nathan almost got a separate trip to the OR just for a sedated echo. Everyone at Primary's works as a team, but no one wants to fill out the right paperwork. Good grief.
And the thing that made me the most upset? While I was downstairs chasing down the right people to get the echo done, Dr. Downey came searching for me in the surgical waiting area and I wasn't there. The receptionist assured me that Dr. Downey would come and look for me, but I want to know what happened now instead of in 3-4 hours when the doctor is done with a different surgery.
I have never been so infuriated at this hospital in the last 21 months as I have been today.
Pre Op 10/19/2009
This morning Nathan went in for his hernia repair and to have his nissen redone. He's always such a happy baby when he goes in for surgery which I've decided makes it almost harder to hand him over. A dose of versed in the nose made him extremely happy go lucky and loopy. He only cried a little when he was handed over to the anesthesiologist. I was VERY impressed with the anesthesiologist who took time to go over Nathan's very lengthy history and to tell me her plan of helping Nathan get the breathing tube out easier. Nathan's sleep study was rushed for this surgery and the results showed that Nathan's severe obstructive sleep apnea was worse than at this time last year. That was very disturbing to Jake and I, especially as the ENT and sleep doctor were concerned that Nathan may have possibly developed pulmonary hypertension. After a lot of phone calls on Friday, it was decided that while Nathan was already in surgery a sedated echo would be performed to check on his heart. One thing that I appreciate about Nathan's doctors at Primary's is that they are open about speaking with us (Dr. Park called my cell phone twice last week to speak with me concerning Nathan's apnea instead of Nathan going in for the doctor visit) and that they work well with each other in determining what is best for Nathan. It is a team approach and no one does anything to Nathan without consulting cardiology and the ENT. Did I mention that I Dr. Park is my favorite doctor of Nathan's?
Since Jake had very little sick leave after his tumor surgery, Kathleen, Jake's older sister, took time off to come and sit with me in the waiting area. She's such a great sister in law and Nathan loves her. Every child needs an Aunt Kath.
I'll post more as the surgery progresses. Nathan is an extremely hard poke and even though he went into surgery at 9:45 a.m., the surgery didn't start until 10:40 a.m. I'm glad that they wait to put the IV in after he's asleep! Poor little guy!




Since Jake had very little sick leave after his tumor surgery, Kathleen, Jake's older sister, took time off to come and sit with me in the waiting area. She's such a great sister in law and Nathan loves her. Every child needs an Aunt Kath.
I'll post more as the surgery progresses. Nathan is an extremely hard poke and even though he went into surgery at 9:45 a.m., the surgery didn't start until 10:40 a.m. I'm glad that they wait to put the IV in after he's asleep! Poor little guy!




Mischief in the making
I shouldn't have given Elisabeth the middle name of Louise. Mischief or even Messy would have had more application to her personality. Don't get me wrong. I love her dearly, but sometimes she tries Jake and my patience to the core. Yesterday was one of those days.
I came home with the kids yesterday afternoon after spending the morning at Primary's to get Nathan's necessary lab work done. I was tired and so I put Nathan in his crib to eat and have a nap (a few plush benefits to a G-tube) and then I went downstairs to sit and rest on the couch. Nathan was quiet and I thought Elisabeth was working on a coloring project or playing Barbies. I think it was only about a half an hour before I went to check on the kids. Ellie was laughing hysterically and Nathan was screeching at his sister. I walked in and Nathan's hair was covered with Aquaphor and baby lotion. Ellie was no where to be found. She had ran and hid in the bathroom closet. She knew she was in trouble. She had covered herself from head to toe with baby powder. The bathroom was COVERED in baby powder too. I don't get why she feels the need to do this kind of stuff. Ugh.
I put both kids in the bath and had to use adult clarifying shampoo to get it out. I bought a bottle of the salon strength kind last year after Ellie aquaphored herself. Are you noticing a trend?
Nathan wasn't terribly happy about what his sister had done and Ellie got to spend 45 minutes on her bed thinking about what she had done. It would have been longer if I hadn't needed to go to choir and conduct.
If she's pulling these kind of stunts at 4, what is she going to do at 16? The thought makes me shutter.


I came home with the kids yesterday afternoon after spending the morning at Primary's to get Nathan's necessary lab work done. I was tired and so I put Nathan in his crib to eat and have a nap (a few plush benefits to a G-tube) and then I went downstairs to sit and rest on the couch. Nathan was quiet and I thought Elisabeth was working on a coloring project or playing Barbies. I think it was only about a half an hour before I went to check on the kids. Ellie was laughing hysterically and Nathan was screeching at his sister. I walked in and Nathan's hair was covered with Aquaphor and baby lotion. Ellie was no where to be found. She had ran and hid in the bathroom closet. She knew she was in trouble. She had covered herself from head to toe with baby powder. The bathroom was COVERED in baby powder too. I don't get why she feels the need to do this kind of stuff. Ugh.
I put both kids in the bath and had to use adult clarifying shampoo to get it out. I bought a bottle of the salon strength kind last year after Ellie aquaphored herself. Are you noticing a trend?
Nathan wasn't terribly happy about what his sister had done and Ellie got to spend 45 minutes on her bed thinking about what she had done. It would have been longer if I hadn't needed to go to choir and conduct.
If she's pulling these kind of stunts at 4, what is she going to do at 16? The thought makes me shutter.


Ellinger Halloween Party 2009
We had the Ellinger Family Halloween party on the 17th and had such a great time! The costumes were awesome (leave it to Dan & Calli to come up with such fun costumes year after year!), and the kids loved the different activities. The kids decorated some Halloween masks, had a cake walk that Nathan won, and played Bingo. The adults had a competition of trying to eat the donuts off the string the fastest. I won with Kath coming in a VERY CLOSE second. We look forward to this party every year.
Grandma also took a "teaching moment" and talked with the kids about washing their hands. Now I have an OCD child who thinks that she has to wash her hands every couple of minutes. Poor Mallory was afraid of the germs after Grandma told her that children were dying from the H1N1 flu for not washing their hands! There are certainly worse things that a child could be OCD over than washing hands:).
Elisabeth and Libby both dressed as Snow White, Nathan as Nemo, Mallory as Cinderella, Keaton was Luke Skywalker, Kierra as Princess Leah, and Kylan as Yoda. Nathan didn't like the head of his costume, but he was VERY PROUD of being Nemo!





Grandma also took a "teaching moment" and talked with the kids about washing their hands. Now I have an OCD child who thinks that she has to wash her hands every couple of minutes. Poor Mallory was afraid of the germs after Grandma told her that children were dying from the H1N1 flu for not washing their hands! There are certainly worse things that a child could be OCD over than washing hands:).
Elisabeth and Libby both dressed as Snow White, Nathan as Nemo, Mallory as Cinderella, Keaton was Luke Skywalker, Kierra as Princess Leah, and Kylan as Yoda. Nathan didn't like the head of his costume, but he was VERY PROUD of being Nemo!





Thursday, October 15, 2009
A Quick Little Update
On Tuesday I took Nathan to see Dr. Downey, a surgeon in the General Pediatric Surgery Department, to have another look at his paresphogeal hernia. The doctor talked with me about Nathan's symptoms and about what my thoughts were on having this operation done. We sat down together and reviewed the upper GI test on the computer. Dr. Downey thought very carefully about it for a couple of minutes, found the upper GI down in January last year, and then said, "I don't like it, but this has got to be fixed. The hernia is much to large and the opening is too tight." A complication of this surgery is that he has to have his nissen redone because that is where the hernia is. I was sick about this because the nissen was one of Nathan's harder surgeries for him. I trust Dr. Downey though. When I had talked to Nathan's pediatrician who had done his residency at Primary's, he commented that Dr. Downey was one of the most conservative surgeons at Primary's and that he would tell me what would need to be done with Nathan's hernia and I should trust him. Both Jake and I really like Dr. Downey and his team of nurses, but this is going to be Nathan's 17th surgery and he'll be a couple of days shy of 21 months when he has this done.
Due to the doctor's schedule, Nathan is going to be having surgery again on Monday. After this last "incident" in the hospital Nathan will again get to spend some quality time in the intensive care unit. Knock on wood, but for being a heart baby, that seems to be the least of Nathan's problems. The surgery will be done laproscopically, but because of old scar tissue from both his heart surgery and nissen/g-tube surgery its going to be harder to recover from than last time.
Monday, the 19th, is the "Big Day" so to speak. It will be just 3 weeks shy of Jake having his bone tumor removed from his femur. The tumor was benign, but he is still on crutches and had his 27 staples removed from his leg last Tuesday. I'll be caring for two invalids which is why I am grateful that Janice is being extremely sweet and coming from Nashville to help me for a couple of days next week. I couldn't have been given a better little sister!
I hope that this will be Nathan's last surgery for a while and that life can resume to being somewhat normal, whatever that may be.
Due to the doctor's schedule, Nathan is going to be having surgery again on Monday. After this last "incident" in the hospital Nathan will again get to spend some quality time in the intensive care unit. Knock on wood, but for being a heart baby, that seems to be the least of Nathan's problems. The surgery will be done laproscopically, but because of old scar tissue from both his heart surgery and nissen/g-tube surgery its going to be harder to recover from than last time.
Monday, the 19th, is the "Big Day" so to speak. It will be just 3 weeks shy of Jake having his bone tumor removed from his femur. The tumor was benign, but he is still on crutches and had his 27 staples removed from his leg last Tuesday. I'll be caring for two invalids which is why I am grateful that Janice is being extremely sweet and coming from Nashville to help me for a couple of days next week. I couldn't have been given a better little sister!
I hope that this will be Nathan's last surgery for a while and that life can resume to being somewhat normal, whatever that may be.
Sunday, September 27, 2009
Oktoberfest 2009
"Roll out the barrel, we'll have a barrel of fun!" (Beer Barrel Polka)






As is a tradition that my mom and Brian started, we went to the Oktoberfest at Snowbird last weekend. Jake and I both LOVE the food, dancing, alpine slide, tram, German bands... what is there not to love about the Oktoberfest. We had such a good time and Ellie loved it! Especially the dancing, alpine slide, and the face painting. Doesn't she look great by the way? It is so beautiful up at Snowbird in September too. We couldn't have asked for nicer weather or for better kids.
They were pretty tired by the end of the afternoon but were troopers to go to the BYU game with us. Now, that wasn't quite as fun to watch your favorite team get slaughtered...






As is a tradition that my mom and Brian started, we went to the Oktoberfest at Snowbird last weekend. Jake and I both LOVE the food, dancing, alpine slide, tram, German bands... what is there not to love about the Oktoberfest. We had such a good time and Ellie loved it! Especially the dancing, alpine slide, and the face painting. Doesn't she look great by the way? It is so beautiful up at Snowbird in September too. We couldn't have asked for nicer weather or for better kids.
They were pretty tired by the end of the afternoon but were troopers to go to the BYU game with us. Now, that wasn't quite as fun to watch your favorite team get slaughtered...
Saturday, September 26, 2009
Its Already Started...


The following day after the Heart Walk, Nathan and Ellie both came down with a good cold and runny noses. By Monday Ellie was still the same, but Nathan really began to have a hard time breathing. He was coughing all night long and by Monday evening he was having a hard time catching his breath period. Jake took him to the Spanish Fork clinic where they took pictures of Nathan's lungs and determined he had croup. Fabulous. Jake came home with a new additional to our home health care stash; our friend The Nebulizer. The first night it frigtened Nathan so bad we had to hold his arms and legs down while the other gave him the treatment. That 15 minutes seemed like an eternity. By Wednesday Nathan was a champ at his breathing treatments. If it started to slide down his face he would push it up just like his glasses. I hope that Nathan won't have any lasting memories of this part of his life.
Did I mention its going to be a LONG WINTER?
Friday, September 25, 2009
Walk for Healing Hearts













On Saturday, September 12th, we attended the Intermountain Healing Hearts walk. This was the second year for the walk and is intended to raise money for the support group to families like us who have a child or family member affected by a congenital heart defect. I've said it over and over again on this blog, but I feel really grateful to be a part of this group. There is something about sharing such a difficult experience with people like you who understand the emotions of extreme sorrow, hope, and rejoicing. We've made life long friends and its really helped Jake and I to appreciate what we've got.
We're so glad that Kathleen, Kristin, Libby, Mallory, Mom, Dad, and Stephen were able to attend with us to support Nathan. I cannot believe how far Nathan has come since his birth. We've had many ups and downs in the last year and its been nice to have such a good family support system. From my understanding, I think it will be held again next year during the second weekend of September. We can't wait!
Thursday, September 24, 2009
First Day of Preschool



I can't believe that Ellie started preschool this year. Last year we intentionally kept her out of school because we were concerned about the germs that she would bring home to Nathan. We used preschool as a way to encourage her to not have anymore accidents and so far it has worked. She loves being able to go to school with her friend, Heidi, in our ward. We are carpooling with Heidi's mom and so Jake and I are responsible to take them to school 1 day a week. Ellie is attending the Raspberry Sawhorse Preschool in Mapleton with Ms. Jackie as her teacher.
I am very impressed with how the preschool is run and about what it being taught. Ellie came home and told us the other day that she was learning to share in preschool. She said, "I'm so good at it!" When Jake questioned her about sharing at home she responded, "Well, I don't know Dad. That seems a little too hard to share at home and at school!" What a little stinker!
All of that aside, she is having a good time and I can't believe that in a year she'll be going to school with Jake.
Wednesday, September 23, 2009
Dr. Park

(Isn't it cute that Nathan is signing "All Done" in the picture!) I love baby signing time!
Dr. Park is by far one of my very favorite doctors of Nathan's. I remember vividly the day after Nathan was born how I had gotten a call from Dr. Park saying that Nathan was struggling significantly to breath and it was due to his severely recessed jaw. He didn't mention to me that Nathan had a code blue call for him in the NICU at Primary's that day(nor did Jake bother to tell me till 2 weeks later!). He was very kind yet concerned that as his mother I had to make the decision whether to operate or not. I was so frightened having to make a decision for a baby I'd only held for 2 minutes on the day of his birth before they had transferred him to the NICU at Utah Valley Regional. In the middle of the night he was determined to be sick enough to warrant having the LIFE FLIGHT team transfer him to Primary's. I'd never seen this doctor's face or had a conversation like this before, but the distinct impression I had was to tell him yes, I would consent to him performing surgery in the morning on Nathan.
He did a fabulous job on him then. He's worked very closely with us to take care of Nathan's severe obstruction sleep apnea. Though I didn't choose him to repair Nathan's cleft, he didn't treat us differently because of it. He's always told us like it is and said what he would do if it were his child. When Nathan had his tonsilectomy, he told us that a small percentage of children don't tolerate the surgery well and what could possibly happen. He even had the forethought to say that he felt Nathan should be sent to the PICU just to be watched.
Nathan's tonsillectomy and appendectomy didn't go as planned. He was in that less than 1% of children group who don't tolerate that surgery. Yet, he always made sure we knew what was going on. We felt we were an equal team member with him in our son's care. Not a lot of doctors treat you that way.
At Nathan's 4 week check up he was a totally different little boy. Dr. Park walked in the room and without saying hi said, "I think you and your husband are the only parents that I've met that didn't flip out when your son had a code blue called on him." I smiled and replied that it certainly wasn't the first time and I'm sure its not going to be the last.
Dr. Park is such a sweet man with a good heart. He is an EXCELLENT children's doctor. We were very fortunate that he was on call when Nathan was transferred to Primary's. He has made a huge difference to Nathan.
Elisabeth's First Swimming Lessons





This summer Elisabeth took her first swimming lessons at the Spanish Fork pool with Kayden. She absolutely loved it! She is a little fish in the making and was very proud of her certificate of completion. Even as I write this, its still hanging on our fridge 2 months after the fact and she shows it off every chance that she gets. She knows that she had to work hard to earn it and it was good to recognize her little accomplishment.
She can hardly wait for next summer!
Wednesday, September 9, 2009
Friday, August 28, 2009
"Operation" Ellinger
I'm suddenly feeling like our life is a never ending game of operation (you know - the milton bradley game where you try to get the parts off the board without the game buzzing at you?) With Nathan it was always just ONE MORE operation. Now, we think that's finally true. So recap for my family for the last 3 years:
2006 - Mom has serious internal bleeding and admitted to UVRMC. Ends up spending 3 solid months in the hospital.
2007 - Mom has biopsy of strange lump in her thigh. 3 months later the doctors realize what the lump is. Mom passed away of calciphilaxis in June. Jake and I spent the last year of mom's life caring for her at the hospital and at home. We became home health care nurses, wound nurses, took her to dozens of doctor appointments etc. It was a break in period for what was to come.
2008 - Nathan born. From January 2008 - June 2009 Nathan endures 16 operations.
March 2009 - I have jaw surgery and spend 8 weeks "sipping cider through a straw".
August 2009 - Jake has been having pain in his right groin area for quite some time but decides its really starting to bother him. He goes to a pediatrist who says there is something wrong with his hip and refers him to an orthopedist. That doctor orders an x-ray. The diagnosis?
Jake has a bone tumor aproximately 2-3 inches below the right socket of the hip that adjoins to the femur. Its about five inches wide and 3 1/2 inches long. Roughly the size of a baseball. Its probably benign, but they can't be for sure about it. One thing that is for sure is that it HAS TO COME OUT. Jake is seeing a tumor specialist in Salt Lake in a week and a half.
Poor Ellie. I told her last night that Dad's body is sick and he will have to go to the hospital to have an operation. Her reply was (in a VERY CONCERNED TONE,"Does this mean that Dad won't be able to eat either?" All she has seen with operations is that Grandma Ellinger wouldn't eat for a long time, that Nathan doesn't eat orally, and that when I had my jaw surgery I didn't eat for a long time. She's a smart little kid to put that all together.
Please pray for Jake. I think he's deservedly a little more freaked out todey than he was yesterday when he found out. But he's a guy and won't let it out too much that he's nervous about this.
2006 - Mom has serious internal bleeding and admitted to UVRMC. Ends up spending 3 solid months in the hospital.
2007 - Mom has biopsy of strange lump in her thigh. 3 months later the doctors realize what the lump is. Mom passed away of calciphilaxis in June. Jake and I spent the last year of mom's life caring for her at the hospital and at home. We became home health care nurses, wound nurses, took her to dozens of doctor appointments etc. It was a break in period for what was to come.
2008 - Nathan born. From January 2008 - June 2009 Nathan endures 16 operations.
March 2009 - I have jaw surgery and spend 8 weeks "sipping cider through a straw".
August 2009 - Jake has been having pain in his right groin area for quite some time but decides its really starting to bother him. He goes to a pediatrist who says there is something wrong with his hip and refers him to an orthopedist. That doctor orders an x-ray. The diagnosis?
Jake has a bone tumor aproximately 2-3 inches below the right socket of the hip that adjoins to the femur. Its about five inches wide and 3 1/2 inches long. Roughly the size of a baseball. Its probably benign, but they can't be for sure about it. One thing that is for sure is that it HAS TO COME OUT. Jake is seeing a tumor specialist in Salt Lake in a week and a half.
Poor Ellie. I told her last night that Dad's body is sick and he will have to go to the hospital to have an operation. Her reply was (in a VERY CONCERNED TONE,"Does this mean that Dad won't be able to eat either?" All she has seen with operations is that Grandma Ellinger wouldn't eat for a long time, that Nathan doesn't eat orally, and that when I had my jaw surgery I didn't eat for a long time. She's a smart little kid to put that all together.
Please pray for Jake. I think he's deservedly a little more freaked out todey than he was yesterday when he found out. But he's a guy and won't let it out too much that he's nervous about this.
Wednesday, August 19, 2009
IHH Heart Walk

Its that time again! Intermountain Healing Hearts is holding their annual heart walk on September 12th. The donations for this go towards helping provide care packages to families and to help support a summer camp for heart families to attend. This group means the world to us!
Last year it was great to see Kristen, Shawn, Libby, Mallory, Kathleen, and Dad attend the walk with us. This year we are aiming for a better turnout! Mom, Dan & Calli, etc. this is your invite! I'm hoping that I can get Brandon, Jessica and Stephen (my nephews and niece attending BYU) to come too!
And maybe, just maybe, Nathan will be walking a little bit just in time for the heart walk. I guess what I'm trying to say is that not only do I view this as a great opportunity to do something enjoyable and to help other's out, but its in a small way a celebration of Nathan's accomplishments in the last year. That little guy is a fighter. 16 surgeries in 18 months. And its not just him, its so many other children and adults (like Kristin)just like him! Please come and join us for this event!
Wednesday, August 12, 2009
Notice the New Ticker -
No, I'm not pregnant and don't plan on becoming that way any time soon! However, after 3 YEARS of braces as an ADULT, I'm finally getting them off!!!
September 3, 2009 is the BIG DAY!
I deserve a little love here because it wasn't just wearing braces for three years, I now have 14 pins and 4 metal plates in my face that I will keep with me until I die. That doesn't count the permanent retainers that I'm asking to be placed so that after all of this misery and embarrassment as an adult that my teeth will be just as I need them to be.
22 more days till I can say, "BEEN THERE, DONE THAT!"
September 3, 2009 is the BIG DAY!
I deserve a little love here because it wasn't just wearing braces for three years, I now have 14 pins and 4 metal plates in my face that I will keep with me until I die. That doesn't count the permanent retainers that I'm asking to be placed so that after all of this misery and embarrassment as an adult that my teeth will be just as I need them to be.
22 more days till I can say, "BEEN THERE, DONE THAT!"
Wednesday, August 5, 2009
The Littlest Heroes Project
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Thanks to Nevaeh's Mom, we found out about the Littlest Heroes Project. I can't figure out how to get this to link properly, but this is where you go to find out about them: http://www.littlestheroesproject.org/
Basically they connect a photographer to a child who has a serious life long illness and Nathan's birth defects qualify him for this. We submitted an application for Nathan and were accepted! They matched us to Sara Boulter (www.saraboulterphotography.com) and she took pictures of not only Nathan, but of both kids and a good family photo of us. I am so excited to have these pictures since we haven't had a family picture since Elisabeth was a baby! The best part is that we didn't have to pay for these BEAUTIFUL pictures as this is not something that we would normally be able to afford.
What an AMAZING foundation and such a kind talented photographer!
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Monday, August 3, 2009
Bear Lake 2009
This weekend we went with Ben and Tammy, our good friends, to Bear Lake. We split the cost of renting a condo and played on the beach all day Saturday. We had such a good time! (I'm not sure how Ben and Tammy tolerated us, but we want to make this a yearly tradition!) Overall, I think the kids did very well playing together. Although we usually do this trip camping style, I'm a big fan of renting a condo now! Next year we're going to reserve it much earlier so that we can get a bigger condo to split (and one that doesn't have a wierd jungle theme going on with it).
The best part? The raspberry shakes! Yum, I can't get enough of those every year.
What I would do again? Not go during Raspberry Days! Ugh!!! It was so crowded this year!
Thanks Ben & Tammy for such a good time!
Besides renting a waverunner for a couple of hours and having fun with it, Jake was just content to sit and read a book for the afternoon and snooze away with Nathan. In this picture his knees and legs are white, but after a couple of hours in the sun without a reapplication of sunscreen, he looked like a lobster!

Kayden LOVED swimming in the water and playing in the dirt. This boy was in 7th heaven up there!

Tammy sat on the sand and played with Carlee for a while. That little girl is such a tomboy! Mud, mud, and mud was all it took for her to be happy the whole day!

Ellie had a great time playing in the mud too although she was just as happy to get in the water and to play. She LOVED having Tammy's kids there to play with.

Ben was the BIGGEST kid of them all. The whole day he sat and dug in the sand with the kids making huge sandcastles and then just a big whole in the ground. The kids loved it though. It was good to have Ben there to keep everyone entertained.

SAND + WATER = EUPHORIA for kids

This is the picture of Ellie with the look that says, "I can't believe you are taking a picture of me when I'd rather be playing!"

These next 2 pictures of Ben speak volumes about him!


Ellie and Chris playing in the water. One of the things I love about Bear Lake is that the kids have room to roam in the water without us feeling like they are going to drown.

Carlee in the ZONE!

Nathan is a rather odd child sometimes which in some ways make him such an easy baby. He REFUSED to let us put him on the sand to sit and play. This boy has serious texture issues. He happily sat in the stoller ALL DAY without whining or crying. He loved watching the other kids and taking a long nap on the beach. What a silly child!


Carlee making a sand castle. Did I mention how much that girl loves the dirt?
The best part? The raspberry shakes! Yum, I can't get enough of those every year.
What I would do again? Not go during Raspberry Days! Ugh!!! It was so crowded this year!
Thanks Ben & Tammy for such a good time!
Besides renting a waverunner for a couple of hours and having fun with it, Jake was just content to sit and read a book for the afternoon and snooze away with Nathan. In this picture his knees and legs are white, but after a couple of hours in the sun without a reapplication of sunscreen, he looked like a lobster!

Kayden LOVED swimming in the water and playing in the dirt. This boy was in 7th heaven up there!

Tammy sat on the sand and played with Carlee for a while. That little girl is such a tomboy! Mud, mud, and mud was all it took for her to be happy the whole day!

Ellie had a great time playing in the mud too although she was just as happy to get in the water and to play. She LOVED having Tammy's kids there to play with.

Ben was the BIGGEST kid of them all. The whole day he sat and dug in the sand with the kids making huge sandcastles and then just a big whole in the ground. The kids loved it though. It was good to have Ben there to keep everyone entertained.

SAND + WATER = EUPHORIA for kids

This is the picture of Ellie with the look that says, "I can't believe you are taking a picture of me when I'd rather be playing!"

These next 2 pictures of Ben speak volumes about him!


Ellie and Chris playing in the water. One of the things I love about Bear Lake is that the kids have room to roam in the water without us feeling like they are going to drown.

Carlee in the ZONE!

Nathan is a rather odd child sometimes which in some ways make him such an easy baby. He REFUSED to let us put him on the sand to sit and play. This boy has serious texture issues. He happily sat in the stoller ALL DAY without whining or crying. He loved watching the other kids and taking a long nap on the beach. What a silly child!


Carlee making a sand castle. Did I mention how much that girl loves the dirt?
Thursday, July 30, 2009
Daddy Daughter Dance
Since I didn't have a camera with batteries that would function properly, I had to swipe these off of Calli's blog! (Thanks Calli for putting them up!)
My mother in law has ambition. She decided for our family reunion this year that she wanted to hold a Daddy-Daughter Dance and that she would sew each one of her five granddaughters a play dress and a princess dress. The dresses turned out perfect! Before the dance she had the little girls go to the MATC college (where Nicole, our babysitter, goes to school) to get their hair done, a little bit of makeup put on, and to have their finger nails painted. The little girls ATE IT UP! It was so fun watching them get ready and to feel so grown up.
My mother in law didn't stop there though. Before the dance we met at her house and had a lesson on modesty. My cute little nephew, Keaton, made us all die of laughter. You have to keep in mind that he is 5 1/2 years old. This is Calli's (his mother's) account of what happened:
Grandma wanted to teach her grandchildren about
modesty. She had the children tell her what dresses
were and weren't modest. Grandma then asked, "What
if you can see her belly button?" Keaton replied, "Well
then you could see all the way down to her ninnies!"
Everyone about fell off their chairs laughing, guess I
should have just told him what the real name for them was!
You know something though? Each of of those children older than 2 understood what Grandma was telling them and several times Elisabeth has pointed out to me people in magazines or even at the grocery store who aren't modest. She has also been a little more careful about wearing shirts under dresses and other outfits that aren't quite as modest as they should be. I think its a lesson that will stick with her.
The dance was wonderful! We waltzed, did the tango, the Bunny-hop, swing, you name it! It was just fun to get up and move with the family where no one cares what you did. My mother is law also had each of the dads get up with their children individually and tell everyone why that child was special to the family. Ellie ate it up that her daddy had good things to say about her. A couple of weeks later Ellie said to Jake, "Next year at our dance, you should tell everyone that I'm a good swimmer and that I can be helpful sometimes too!" Ah kids!
We all had a good time! (Although now that Grandma has done so much sewing for the girls, Ellie wants Grandma to make MORE dresses for her!) I married in to a great family!
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