Our Christmas Adventure (or misadventure...)

"Christmas Eve in our hotel at the Marriott"

On Tuesday morning, I put in a load of laundry and left the house for an appointment. Jason and Connor both stayed home in bed because they weren't feeling well. About 30 minutes later, I got a phone call from Jason saying we had a big problem at the house. He said the washer had overflowed and our hallway upstairs was flooded and the water was going through the floor to the kitchen ceiling! The water had reached the fire alarm in the kitchen, which alerted Jason to what was going on. But, by that time, gallons and gallons of water had already flooded the second level laundry room and hallway of our house. Jason tried to "mop up" the water with towels, but that was a losing battle. He also put down buckets and towels in the kitchen downstairs to catch the water leaking through the ceiling, all the while feeling as sick as a dog!

A couple of hours later, a team of workers from a disaster aid company arrived on the scene. They got right down to business sucking up the water, pulling up the wet carpet and removing the pad, and tearing up the vinyl underneath the washer and dryer. After they had finished with that, they set up several machines to dry and de-humidify the wet wood, carpet and ceiling. The equipment had to run continuously for 3 days. So, with the second level of our house torn up, and very loud machines everywhere, we had to stay at a hotel. Christmas in a hotel. Not exactly what we had in mind for our Christmas celebration! Of course, the kids' first concern was Santa Claus--we assured them that he would still find us, even in a hotel.

We packed up some clothes, Parker's medications, oxygen concentrator, and medical supplies (a daunting task...), and the laundry that was never finished and checked in at the Residence Inn Marriott. At least it was a nice place to stay! The kids liked it immediately because there was a TV in every room with Disney and Nickelodeon channels AND a fireplace for Santa.

The next day was Christmas Eve. We had KFC for dinner (about the best we could do...) and then had our special advent tradition (reading the Christmas story from the scriptures and having treats with hot chocolate) and Christmas Eve presents for the kids (always PJs). Kelsey still left out a letter with milk and cookies for Santa and some reindeer food and we all went to bed.

Christmas morning was filled with excitement as the kids each discovered the gifts Santa had brought for them. Connor exclaimed, "This was the best Christmas EVER!!!" and Kelsey said, "Santa must have known we were having a hard time at a hotel because we got extra presents." and Parker said, "Wuff, wuff!!!" (he got a rocking puppy). Santa even remembered the oranges for the stockings.

Needless to say, Christmas this year was different than we had planned or expected, but it was still Chirstmas--a time to be together with those we love most and celebrate the birth and life of our Savior, Jesus Christ. We are so grateful for Him and the sacrifice He made for all of us. It is because of Him that we can still keep going, even after a rough year of trials that seem like they will never end. He continues to give us the strength we need to make it through and helps us do the best we can do.

So, It's a few days late, but we still wanted to say Merry Christmas to all of you. We hope you all had a wonderful Christmas filled with good food, presents and love and not a flooded house....

Kelsey's Piano Recital

Kelsey had her first piano recital last week. She did great!

Our 10th Anniversary!

Today is our 10 year wedding anniversary! It is hard to believe that Jason and I have been married for a decade, but it has been the best years of my life. Happy Anniversary, Jason! I love you!!!

Baby Steps

Parker took his first steps this week. He is still a bit unsteady, but he is getting more confident every day! I think he's going to beat our goal of walking with his backpack by his birthday-way to go, Parker!!!

Sick of being sick!!!

Connor and Parker are both sick AGAIN!!!

Connor has really been having a hard time this season with his asthma--it has gotten to the point that he can't even run or play without coughing. So, we took him in to the doctor this week and the doctor said his asthma has gotten worse. He switched his medicine to something a little stronger. Hopefully, it will make a difference so he will feel like he can play again. He also has a cold on top of that, so he's been feeling pretty crumby. 

Parker got over his sickness from last week and did great all weekend, but on Tuesday night he spiked a fever of 103.5! Because it came on so suddenly and it was so high, we were worried that it might be an infection in his IV catheter, which is very serious. We called the cardiologist on-call at 3:00am and she said to just get the fever down and see our pediatrician in the morning. Fevers are extremely hard on Parker, because fevers make your heart rate go up--his heart rate was in the 180's! Poor little guy. So, yesterday we went back to our doctor for the second day in a row. They checked Parker's ears, throat, and nose and they did tests for the flu and RSV. They also did a CBC and everything came back perfect. So, just a virus, I guess. Parker also had his monthly cardiology appointment today (I think we live at the doctor's office...) and everything was just fine. Dr. Williams did some blood cultures just to make sure there isn't an infection in Parker's IV line. He also said that at our next visit in January, it will be time to discuss doing another heart catheterization. We are certainly NOT looking forward to that.

Anyway, we hope the boys will recover quickly and that the rest of us will be able to stay healthy!!!

A Bump in the Road

We are finally home after spending a very long day in the hospital--Parker was admitted to the hospital yesterday because he was having trouble breathing. He started out with a little cough last Friday. On Saturday, he was up all night with croup. It was very scary and we almost took him in then, but knowing they would admit him as soon as we walked through the door, we decided to wait it out at home. On Sunday morning, I took Parker to see his on-call pediatrician. She said that he did have croup and prescribed some oral steroids. The croup seemed to loosen up just a few hours after his first dose and it turned into a very wet cough instead. Yesterday afternoon, Parker took a turn for the worse. He was upset all afternoon, having trouble breathing, and his heart rate was very high. I tried everything I could think of to help him feel better, but by the time Jason got home from work, he hadn't improved at all. We knew that taking him to the hospital was about our only option. So at 7:30 last night, we arrived at the ER. They saw Parker relatively quickly for a busy ER, and they determined within an hour or so that he needed to be admitted--we knew that would happen. Unfortunately, then we had to wait 2 and 1/2 hours in the ER for them to move us to a room. It was very frustrating. Parker was finally able to go to sleep around 2:00am. But, being in an unfamiliar and scary place, neither of us slept good. Today was just a day of waiting and monitoring. Parker did much better today so we were hoping to go home. Dr. Williams came to see him around 2:00pm and said he was comfortable with us going home, if we were. We didn't have to think very long about that--we packed up our stuff and came home! Parker was exhausted and we really felt that it would be best to take him home. Because Parker has a rare lung condition and is on several uncommon medicines, it will always be tricky when Parker gets sick. Most doctors are clearly uncomfortable in caring for him. This will probably always be something we struggle with. But for now we are extremely grateful that he is OK and that it was just one day in the hospital--hopefully just a little bump in the road.

Grandma and Grandpa Come for a Visit

Grandma and Grandpa Wardle came to North Carolina to visit us for a few days. It is always so much fun to have our family come! They decided to come see us before they headed back to Utah since they just finished serving a 18 month long LDS church mission in Cleveland, Ohio. While they were here we went to the Festival of Trees, Tanglewood Park's Festival of Lights, and we saw "Bolt" at the movie theater. Jason and I even got to go on a date!!! Grandma and Grandpa Wardle were also here for Thanksgiving, which was great. We are very grateful for the example they have set for us and our children by serving a mission and we wish them the best as they move on to a new phase in their lives.

PH Awareness Day--Parker's Story

November is Pulmonary Hypertension Awareness month and today is Pulmonary Hypertension Blogging day--just a small way to get the word out on the world wide web about PH. People all over the world are sharing their stories, hoping to help people understand and become aware of PH. You can check out these stories by going to phawareness.blogspot.com. We also wanted to share our story...

“Parker has a condition called pulmonary hypertension. That means the blood pressure in his lungs is too high. His heart has to work really hard to get the blood to his lungs and that’s why his heart is enlarged. Now, there’s all sorts of tests we will need to do to see if we can find a cause for the pulmonary hypertension and he’s going to need to stay on oxygen, so you’ll be here for a few days while we figure everything out. And, stay away from the internet because if you read some of the stuff that’s out there it will scare the H-E- double hockey-sticks out of you…”

On February 29, 2008, my baby boy, Parker, was diagnosed with pulmonary hypertension, a rare lung disease. As the doctor at Brenner Children’s Hospital explained his new diagnosis to me, I actually felt a bit of relief to finally know what was going on with him, but I had no idea how my life would be turned upside down as I began this journey with Parker.

Parker was born on April 30, 2007 after a long day of waiting. He weighed 8 pounds, 9 ounces and measured 21 inches long. He was healthy and beautiful. We were overjoyed to be blessed with this sweet baby boy. As the weeks passed, Parker seemed to be fine. He wasn’t a very good eater and he wasn’t as big as my other two babies had been, but he was happy, easy going and content. By the time Parker was 8 months old, he still couldn’t sit up by himself, he wasn’t gaining weight like he should, he had a random cough and wheeze and I had a nagging feeling deep inside that something just wasn’t right.

On February 26, 2008, after a month of high calorie formula, Parker had only gained 5 ounces. Our pediatrician finally heard Parker cough and wheeze while we were there and I saw a look of concern on his face as we discussed a few common things that could cause Parker’s symptoms. He recommended treating Parker for asthma and reflux and he also agreed to order a chest x-ray at my request, even though he really felt that it would be normal. It wasn’t normal--it showed an enlarged heart, something none of us were expecting. That led to an EKG, which was also abnormal, and that led to a hospital admission and an echocardiogram that diagnosed Parker with PH. Parker had every test you can imagine while he was in the hospital, as his cardiology team tried to find a reason for his PH. All the tests came back normal. He was scheduled several weeks later to have a heart catheterization, the only test available to accurately measure the blood pressure in the lungs.

On April 8, 2008 I took Parker to Brenner Children’s Hospital for the heart catheterization, expecting to only be there overnight, and to come home with some answers. Instead, Parker ended up in the ICU, after having what the doctors called a pulmonary hypertensive crisis. I left my sweet baby boy that morning smiling and playing and saw him at the end of the day lifeless and white with countless tubes and IV’s hooked up to him. He was on a ventilator and he was completely sedated. It was hard for me to comprehend how this had happened. I was completely overwhelmed; all I wanted to do was take my baby in my arms and rock him, and I couldn’t even do that.

Because of complications with the breathing tube, Parker stayed on a ventilator for 18 days. My husband and I stayed with Parker constantly. We prayed for him to pull through this terrible ordeal and come home with us, but we also tried to prepare for the worst. Finally, 4 days before his first birthday, Parker came off the ventilator and he celebrated his birthday in the ICU. 13 days later, we brought him home--this time with oxygen, a permanent IV in his chest and several oral medications. 

6 months later, Parker is like a new baby! He finally weighs 20 pounds, he crawls, climbs, and gets into everything like most 18 month olds. But unlike most 18 month olds, he wears a little backpack wherever he goes that holds his IV pump, he is continuously hooked up to oxygen, and he maintains a strict medication schedule. Despite all of this and all that he has been through, Parker is still as happy, easy going and content as he was when he was born. We are so grateful for the progress he has made in the last 6 months and we are so grateful to be part of his life. We may never know why Parker has this terrible disease and we may never find a cure for him, but there’s always hope and we can never give up on that.

If you would like to post Parker's story on your blog today in honor of Pulmonary Hypertension Awareness day, that would be great! Just e-mail me at jen@cd-romney.com. Thanks for all of your continued love, prayers and support. For more information about pulmonary hypertension, got to www.phassociation.org.

Peek-A-Boo

Parker Update

Today I took Parker to his cardiologist for an echocardiogram and his monthly appointment and we received some wonderful and very encouraging news... According to his echocardiogram results from today, his pulmonary pressures have dropped!!! His pressures have been around 130 for about the last 6 months (ever since we left the hospital in May) and today his pressures were down to the low 90's! This is incredible progress!!! Pulmonary pressures in the 90s are still not "good" (normal pressures are around 25), but for Parker, it is great! We are so excited for the progress he is making and we know that Heavenly Father is giving him the strength he needs to fight this disease. We are also so grateful to each of you who continue to pray on Parker's behalf--it's working!!! Now if we can just make it through the winter cold and flu season without Parker having to be hospitalized...

Unfortunately, we are all sick right now. Kelsey is getting over bronchitis, Connor has something similar and is on anitbiotics and oral steroids, Jason and I caught a little of something too, and Parker has croup! So, we are just a bunch of sickos, but hopefully we'll get better soon.

Halloween Fun!!!

3 Little Indians, a storybook princess, and a knight left our house last night to attend our ward Halloween party. We arrived on the scene with some pretty hot chili and treat buckets ready for some Halloween fun. We ate chili, played a few games, and then headed outside for the "trunk-or-treat".  The kids had a great time "trunk-or-treating" from car to car. Even Parker joined in on the fun--once he realized people were giving out candy, he started shaking his bag, bouncing his legs up and down, and saying some kind of jibberish unitl he got some candy too! He thought it was great! Of course, Jason won the "hottest chili" contest for the 4th year in a row. We all had a lot of fun. When we were driving home, Connor said , "I LOOOOVVVVE Halloween!!!"

Our Jack-O-Lanterns!

Singing Angels

Yesterday was the annual Primary Presentation in our ward and it was wonderful! The children singing the primary songs always touches me spiritually--they are like little angels testifying of Jesus Christ. My favorite song was a combination of Called to Serve and We'll Bring the World His Truth, which they sang with the piano and the organ together. During that song, the spirit in the room was so strong--it was awesome! It was Connor's first year to be apart of the program and he did great. He sang most of the songs and said his part loud and clear (...and waved at me about 10 times and only made a few faces when he started to get bored:). Unfortunately, Kelsey has bronchitis, so she had to stay home. While I was sitting there listening to their sweet voices, I realized that this was the first year in 7 years that I was part of the audience and not up with the children as a primary teacher or pianist--that was really nice, I thoroughly enjoyed it.

To the pumpkin patch we go!

Today Connor, Parker, and I got to go on a hayride at Tanglewood Park with Connor's Preschool. It was a beautiful day to ride through the park and enjoy the changing leaves and crisp morning air. The hayride took us to a pumpkin patch where we were able to pick out two pumpkins to take home. Connor ran to the first lumpy, bumpy one he could find and declared it his (he has been wanting a lumpy, bumpy pumpkin this year since we read the book "The Littlest Pumpkin"). He helped me pick out my pumpkin too. We can't wait to carve them!

The Dixie Classic Fair

On Saturday, we headed to the Dixie Classic Fair to enjoy rides, games, and fried food. We also wanted to go because Kelsey's art teacher had entered some of her work from last year in the fair. It has been absolutely beautiful in North Carolina lately, so it was a great day to be outside. First, we found Kelsey's painting, which was excellent--she was entered with just a handful of kids from her school, so we thought that was pretty cool! Then Kelsey and Connor got to ride a couple of rides and we ate lunch. After that, we headed off to see the animals. They had goats, rabbits, horses, cows, lamas, and even a camel! The kids really enjoyed feeding carrots to the animals in the petting zoo. We also saw all the vegetables and fruit that people had entered. The first place pumpkin was over 600 pounds--It was huge!!! Then we let Kelsey and Connor each play one game, but they didn't win anything, so they were both disappointed and upset on our way home. Connor said he wanted a prize without a game...All in all it was an enjoyable afternoon.

Parker Update

We have a great reason to celebrate! Parker FINALLY made it to 20 pounds!!! Today Parker had his monthly visit with Dr. Williams, his cardiologist, and we were pleasantly surprised with his weight of 20 pounds 1 ounce. Parker continues to do well and is still stable. He will have another echocardiogram in November to see if there are any changes (good or bad) in his lung pressures. Eventually, Parker will have to have another cardiac catheterization because this test is the ONLY way to accurately measure the blood pressure in the lungs--the echocardiogram is only an estimate. But for now, Dr. Williams has promised us that he won't do it until he has very convincing positive changes from an echocardiogram. Naturally, we are not anxious to repeat the catheterization because of what happened in April. (For those who are unaware...Parker ended up in the hospital for 36 days, the majority in the ICU where we weren't sure if he was going to make it...) We only want to do what is best for Parker and we hope the next time around, things will go much smoother. But until then, we will continue to enjoy every minute we have with each of our children, especially Parker. We are so incredibly blessed to be a part of their lives and we love each of them dearly. One thing I have learned on this journey with Parker is that life does not always turn out the way you want it to or think that it should but life is a gift and we should live it that way!

Physical Therapy or Fun?

Parker started in-home physical therapy 3 weeks ago and he loves it! His physical therapist, Emmie, comes to our house once a week and brings a big bag of toys for him to play with while she is here--or at least he thinks he's playing... He reaches on his tip toes for a couple of balls that she places out of reach, he cruises along the couch, he climbs over her feet, he stands and plays with beads and a bottle, and he bends down for toys on the floor, which are just a few of the things that Emmie helps Parker do to build his strength and endurance. It might not sound like therapy, but believe me, Parker is working hard and by the end of the session he is completely exhausted! Emmie says Parker is an extremely hard worker and he doesn't give up easily. Although, he usually has to stop about 3 or 4 times during the session to check in with me and lay his head on my shoulder--so sweet:), especially after doing something that is really hard for him, but it only lasts for a few seconds before he is off again to "play" with Emmie. We are in the process of getting orthotics for his little feet so he will stand correctly. Because he has such low muscle tone, he is extremely flexible and the ligaments in his feet have stretched so he actually doesn't even stand on his feet (see picture)! So, until the orthotics come, he just wears his shoes all the time which helps a little bit to keep his feet flat on the floor. Anyway, if you asked Parker, I think he would say physical therapy is fun!

Cookies with a kick!

Today it was Connor's turn to pick the treat for family home evening, so he helped me make chocolate chip cookies. Butter, sugar, brown sugar, vanilla, eggs, flour, salt baking soda, chocolate chips and hot nuts. What--Hot nuts?!? Well, Jason made HOT chili for his students last week and used the chopper for A LOT of habanero peppers--apparently, there was some of the "hot chili pepper residue" left over in our chopper and it mixed in with the nuts...The cookies actually turned out pretty good--there was just this strange flavor in the background that kind of made your tongue tingle a little bit. Just call it "cookies with a kick"!!!

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Baptism Day

On Saturday, September 13th Kelsey was baptized as a member of The Church of Jesus Christ of Latter-day Saints. Our family, Grandma and Grandpa Romney, Aunt Mindy, the Pence's, and a few other members of our ward were able to be there with her. It was a very special day. While she was changing her clothes after she was baptized she said, "I think Heavenly Father is proud of me today." I told her that I knew he was and we are too. We are so grateful for Kelsey and her sweet spirit and simple faith. She is an example to all of us. We love you, Kelsey!!!

Happy Birthday, Kelsey!!!

Eight years ago today we had our first child--a beautiful baby girl. We were so excited to be parents and watch our daughter learn and grow. Eight years later, Kelsey has grown into a sweet and special girl. She is very loving and compassionate and easily makes friends with all around her. She is very smart and creative and we enjoy all she does to make everyone happy. She was able to celebrate her birthday today with her Grandma and Grandpa Romney and Aunt Mindy (who all came from Utah to be here this week) and our best friends, the Pence family. We had pizza, balloons, presents, and a pink butterfly cake. She received many wonderful presents--even a telescope that she can't wait to try out. We love you so much, Kelsey, and we hope you had a wonderful birthday!!!

Parker Update

Parker had his first cold this past weekend and he made it through without having to go to the hospital! We are so grateful that he was able to push through it. It was a bit scary for all of us--but as Parker has proven time and time again, he is a tough little guy. He also had his monthly cardiology appointment yesterday. It was pretty routine--Dr. Williams said he sounds and looks great, so that is encouraging. He has really made a lot of progress in the last several weeks. It has been 6 months since his diagnosis of Pulmonary Hypertension--what a crazy 6 months it has been! But, as we have said before, we can't complain. Parker is still here with us, he is happy, gaining weight, and getting stronger every day. We don't know what the future holds for our sweet little Parker, but we are incredibly grateful for him and the opportunity we have to raise him.

Stronger Every Day!

Parker started physical therapy today and he did great. The therapist felt that he is doing extremely well and the only things he really needs to work on are strength and endurance. That makes a lot of sense in relation to his Pulmonary Hypertension--he doesn't lack the ability he just doesn't have the energy and strength that most kids his age have. But he has improved dramatically in his strength in the last month. We feel like he actually gets stronger every day. He now can wear his backpack (which holds his IV pump--probably about 1 -2 pounds) and crawl around and play for at least 30 minutes at a time. This is wonderful progress! Our goal is for him to be able to carry his backpack all day and still be able to crawl, play, and eventually walk. The physical therapist felt like this was a worthy goal that he could definitely reach with regular strength and endurance training. Way to go, Parker! We are so proud of him. He also had his first haircut--a buzz. It looks so cute:)

First Day of Preschool

Today Connor started preschool at Hopewell Moravian Preschool. He had a great time. He got to paint, play outside, and have goldfish and apple juice for a snack. He said he wants to go back tomorrow, so that's a good sign! He will be going to preschool on Tuesday, Wednesday and Thursday mornings. It will be a much needed change for him and a little break for Mommy! 

Mystery Diagnosis Episode

Jen's parents called last night to tell us they saw an episode of Mystery Diagnosis on the Discovery Channel that profiled one girl's story in finding a diagnosis for Pulmonary Hypertension. We had heard of the episode but hadn't made an effort to watch yet. Fortunately, it didn't take us 15 years to get an accurate diagnosis for Parker (I don't understand how this girl survived that long without treatment) but much of this girl's experience is similar to our experience with trying to figure out what was going on with Parker. I've posted the episode online if you want to watch:

Mystery Diagnosis - The Girl Nobody Believed

First Day of School

Kelsey started second grade today at Ward Elementary School. She was pretty excited to go back to school. The first thing she said to me as soon as she got off the bus was, "It's going to be the best year EVER!!!" We know she will do great!

Parker Crawling!!!

Our Summer Day Trips

This week we had planned some family day trips--or a family vacation where we could go somewhere fun for the day but still come home and sleep at our own house at night. We thought this was something we could reasonably do with Parker. So, on Wednesday we drove to Raleigh, NC for our first day trip. We started out at Kazoom, a children’s puppet show, which the kids loved. Then we ate PBJ sandwiches in the van (one of Connor’s favorite parts of the day...) before heading into the NC Museum of Natural History. We saw everything from real butterflies to dinosaur bones and everything in between. The kids really enjoyed it! We spent about 3 hours there and then drove home and went to Chuck E. Cheese pizza for dinner. We ate pizza and played games until we had 400 tickets and then it was time to go home and go to bed. On Thursday, we drove to Blowing Rock, NC to visit Tweetsie Railroad, NC’s first amusement park. They have an old-fashioned steam engine that rides around the mountain, several rides, shows, and stores. It was a beautiful day to spend in the mountains riding the ferris wheel, the carousel, and the tilt-a-whirl. Parker was even able to ride some of the rides too. We left the park at 4:00 and ate dinner at Golden Corral and then drove back home again. Today, we slept in and then went to breakfast at IHOP. To end our day trips, we went miniature golfing. Kelsey scored the only hole-in-one! Although it was a pretty exhausting couple of days, we all had a great time being together and we were glad that we were able to pull off some “normal” family activities and still take care of Parker. Oh, and one more thing...Drum roll, please...Today Parker CRAWLED!!! It was only a few feet, but he actually did it! We are so proud of him.

Parker Update

It's time to celebrate! Parker has FINALLY passed 17 pounds--he now weighs 18 pounds 10.9 ounces!!! We are so proud of him. Yesterday he saw Dr. Williams, his cardiologist, for his monthly appointment. His vital signs were all great, as usual. He also had an echocardiogram (basically an ultrasound of his heart). It didn't show any improvement, but it also wasn't worse than a few months ago, so essentially that means he is stable. We can't complain about that! Today he saw his pediatrician, Dr. Satterwhite, for his 15 month check-up. He is still in the less than 3% for his weight, but he is gaining weight now, so that's what counts. We all know that Parker is much smaller than most kids his age and behind in his gross motor skills (crawling, walking, etc...), but we know that he will eventually catch up. For now, we are just incredibly grateful for the progress that he has made and the great blessing we have of being part of his life.

Let's Swim

Last week Kelsey and Connor went swimming with their friends, Rylie and Corteney. Other than getting a bit sunburned, they all had a great time!

Parker Update

Today Parker had his physical therapy evaluation with the Children's Developmental Services Agency of NC--a program that provides early intervention services for young children who have special needs. Mostly they just watched him play to see the things that he could do like sit up, reach for things, stand holding on to something, etc. They scored him based on each skill that he could or could not do and that gives them a general idea of how far behind he is. They think he is at the physical level of a typical 9 month old--so he's about 5 - 6 months behind. But given his medical condition and 5 weeks in the hospital, they don't feel that's too bad. And Parker is getting stronger every day and he is definitely motivated to move so we have no doubt that he will catch up eventually. They recommended in-home physical therapy 2 - 4 times a month and we will be very involved with the therapy--they will teach us what to do so we can practice with Parker on a daily basis...just one more job title we can add to our list:)

Pulmonary Hypertension Podcasts

As many of you know, Parker was recently diagnosed with Pulmonary Hypertension. This is a rare, life-threatening, and currently incurable disease. An independent film company "Periwinkle Films" is producing a biweekly video podcast about pulmonary hypertension in an effort to raise awareness for the disease and provide support for patients and caregivers. The first episode dated July 14, 2008 is great. It includes a discussion with one of the leading doctors in the field and a compelling patient story. For all of you who are curious about what we're going through and what this disease is all about, we highly recommend these videos.

www.phodcast.org/phodcast/

Camping--What were we thinking???

Last night we tried to go camping with our ward for a Pioneer Day Celebration and we failed miserably!!! So much at an attempt to do something "normal" as a family... We lasted until about 10:30pm and then decided it would probably be best to pack everything up and go home. Unfortunately, camping was a bit too ambitious of an activity for us with Parker and all of his special needs. Oh well, at least the tinfoil dinners were good!

New Tricks

This past week Parker has learned several new tricks. We can tell that he is getting stronger everyday and he seems to be growing right before our eyes! He finally learned how to sit up from laying down (a really big step!!!), he is playing peek-a-boo with his hands--most of the time his hands miss his eyes, but he gets the basic idea:), rotating around in a circle on his bottom, and he has even started scooting on his belly, another really big step for him. However, being mobile means more work for us--we have to constantly follow him around and keep him untangled from all his tubes, but the tubes don't seem to bother him! We are so proud of his progress!!!

Bite apple, lose tooth!

Yesterday one of Kelsey's teeth came out in the apple she was eating. It was pretty funny. She was very excited because that meant the tooth fairy would come last night--which she did, leaving Kelsey 75 cents!

Parker Update

Today Parker saw his cardiologist, Dr. Williams, for his monthly visit. He gained another 6 ounces (yeah!!!) and all his vital signs were perfect. After answering our long list of questions and examining Parker, Dr. Williams said Parker is doing great. We will continue all of his medicines and oxygen as they are now. Parker will have another echocardiogram at his next visit--hopefully there will be some positive changes. He is also going to see a developmental specialist to see if he needs any physical therapy since he is quite a bit behind most 14 month olds (he is not crawling or walking yet, just rolling) and he will have another swallowing study to see if he is still aspirating. Even though we really don't know if any of the medicines are working, Jason and I are optimistic--Parker is eating better than ever and finally gaining weight, he is sleeping much better at night (thank goodness :), and he gets stronger everyday. We are so grateful for Parker. He has gone through so much, but he is so brave. We hope and pray that he continues to do well!!!

Our 4th of July Celebration!

Yesterday we celebrated Independence Day with our friends, The Pence's, at Tanglewood Park. Going to the park to watch the fireworks has become a tradition in our family. We try to get to the park a few hours before the show so we can get a good spot. We bring a lot of games and treats and enjoy some time together while we wait for it to get dark. Every year it has been a great fireworks show, and we were not disappointed last night! Connor and Kelsey kept "ooooing and aaawwing" while Parker and Mommy watched the show from inside the van. Unfortunately, Parker was terrified of the loud booms and he cried the entire time... But we still had a great time and can't wait to go back again next year!!!

Thanks, Grandma & Grandpa Romney!!!

Yesterday the kids received a package from Grandma and Grandpa Romney. They sent some souvenirs from their trip to Mexico. Here is a little clip from the kids...

Daylily

Today my first daylily bloomed! It is my favorite flower in my garden. It is absolutely beautiful!!!

Working in the Yard

Some of Jason's colleagues, Martha and Howard, came over this week and weeded our flower beds and garden and planted some tomatoes, watermelon, hot peppers and flowers. That was so nice of them--yard work has not been a top priority lately!!! They did a great job and I think it motivated us to get going. Jason finally mowed and trimmed the grass (it's been a while..) and then we decided to get a few more vegetables for the garden and some more flowers. The kids also wanted to pick out their own flower/plant to take care of. So off to Lowe's we went. Connor came home with a Venus Flytrap and Kelsey came home with some pretty pink flowers. We planted our flowers and vegetables and when we were all done Kelsey said she was glad we did it because it all looked beautiful. It was a good day.