Dancing Shepherd

Merry Christmas!!!

Christmas morning was fun and relaxing. The kids were so excited with the gifts they each received and we all had fun playing and being together all day. Kelsey was VERY happy to receive her first sewing machine and several projects to keep her busy for a while (with Mom's help). Connor was happy to get a Darth Vader costume and a red light saber--he had the costume on within minutes of coming downstairs and he wore it most of the day. Parker was just excited to finally be able to open the presents that he's had his eye on for the last few weeks. It was a nice day spent together, definitely an improvement from last year's Christmas (click here to read about our 2008 Christmas adventure). We are so grateful for the many blessing we have received, for wonderful family and friends, and most importantly, for our Savior, Jesus Christ--the true reason for the season.

Christmas Eve 2009

On Christmas Eve we had our last advent of this Christmas season which included reading in the Bible the story of the Savior's birth, singing Christmas carols and having hot chocolate and treats. The kids dressed up as Mary (Kelsey), Joseph (Connor), and a shepherd (Parker)--this is a tradition going back to when Jen was a kid and the kids LOVE doing this each year.

Another Christmas Eve tradition we started when Kelsey was a baby is opening new pajamas. The kids always look forward to opening that one special present marked "EVE". This year even Jason and Jen got new PJs!

Snow in December!!!

In the 8 years we have lived in North Carolina, we have never had snow in December! In fact, this was the most snow we have EVER had since we've lived here (only about 4 -5 inches...). The kids LOVED it!!!

We tried to build a snowman, but it had rained on top of the snow and it was pretty frozen, so we gave up on that idea. We decided it was good packing snow. Perfect for building a fort--that took too long, so we gave up on that too. In the end, we just stacked up the buckets of snow until it fell over. We also had a pretty good snowball fight ( I didn't have to teach the kids how to make snowballs this time--they remembered from the snow day we had last winter). Somehow, Mommy seemed to be the target for most of the snowballs. Yea for snow!!!

Eleven Years and Counting

Today Jason and I celebrate our 11th wedding anniversary. It seems crazy that it has been that long! Our married life has had some unexpected twists and turns with a lot of pretty great moments too--I'm so grateful to have him to share it with. Happy anniversary, Jason. I love you--Always and Forever!!!

Hooray for Parker!!!

We just had to announce that Parker FINALLY hit the big two five--meaning he now weighs 25 pounds!!! We are so proud of him and are so grateful he is growing and getting bigger and stronger every day. He's still below the 5% (meaning out of 100 children his same age more than 95 of them weigh more than Parker does), but that's OK. He's got his own curve going up on the growth chart and that's all that matters. We just hope and pray that it continues! Way to go, Parker!!!

Parker also saw his cardiologist this week for his routine exam (he's only going every other month now instead of every month!). His doctor feels like he is doing great and to just continue everything as is. He also had an echocardiogram (basically an ultrasound of the heart) and it was about the same as his last echo which was back in April or May. So, not any better, but not any worse either--that's good news as far as we're concerned! We are continually grateful for all the progress he has made, especially in the last year. He is an amazing miracle that we are so blessed to have in our lives.

Myrtle Beach!

We had a great Thanksgiving weekend in Myrtle Beach, South Carolina. We played in the sand and the waves, collected seashells, swam (in the indoor heated pool--NOT the ocean!!!), and enjoyed being together. My Mom and Dad were even able to join us on Friday night--it was great to have them with us too. It was a wonderful mini-vacation--we are so lucky to live just a few hours from the beach. We can't wait to visit again!!!

My Experience as a Caregiver

As I mentioned in a previous post, November is Pulmonary Hypertension Awareness month and today is Pulmonary Hypertension “Blogging Day”--people all over the world are blogging about their experiences with PH. Last year on “Blogging Day” we posted Parker’s Story--you can click here to read it. This year I thought I would talk about my experience as a caregiver.

Parker was diagnosed with Pulmonary Hypertension in February 2008 when he was just 10 months old. It is hard to express in words how it felt to be told that my baby had something terribly wrong with him, but the best way that I can describe it was an odd mixture of relief (to finally know what was going on) and a real physical feeling of my world being turned completely upside down. The first few weeks after Parker’s diagnosis I tried to learn and understand as much as possible about PH. Many of the things I read pretty much scared me to death! But, being Parker’s caregiver and advocate, I knew that I had to be as informed as possible so that he could receive the best care possible.

After Parker’s traumatic heart catheterization in April 2008, we were faced with the very real possibility that he was going to die. Once again, it is hard to express in words how that felt. I was overwhelmed with sadness and a general feeling of helplessness. Fortunately, my faith in the Lord, Jesus Christ, my strong relationship with my husband, Jason, and the support of many family members and friends gave me the extra strength that I needed to make it through that very difficult time. Miraculously, Parker pulled through and we prepared to bring him back home and somehow try to turn our world right side up again.

Parker would be coming home with an IV medication called Remodulin and several oral medications, including supplemental oxygen 24 hours a day. We were given in-depth instruction from the doctors and nurses so that we would feel as comfortable and confident as possible in caring for Parker once we were back home again. As you can imagine, I was completely overwhelmed with all of these new responsibilities. Jason and I literally felt like we had been trained to be Parker’s nurse, respiratory therapist, and pharmacy technician!

The first few months I did my best to keep up with all of Parker’s special needs and try to make it become part of our daily routine. I had to give him 9 oral doses of medication at different times throughout the day, keep his oxygen tubes in his nose, monitor his oxygen saturation (the amount of oxygen in his blood), care for and change his IV dressing at least once a week, mix and administer his IV medication, change his IV pump every other day, keep his IV dressing clean and dry (even at bath time), order his IV medication and supplies and keep him under constant supervision. I realized very quickly that I needed help keeping track of all these responsibilities so I made charts and schedules and even bought a kitchen timer so I wouldn’t forget his afternoon dose of medication. Believe it or not, over time, all these things did manage to become part of our daily routine.

It’s been nearly 2 years since Parker was diagnosed with PH and he has improved dramatically in that time. So, is my life right side up yet? Probably not. But, somehow I have learned to deal with the ups and downs and the stress of taking care of a child with a chronic illness. I don’t think I could ever call my life normal even now when he has made so much progress because there is still that constant fear and concern in the back of my mind that his condition could worsen at any second. Sometimes, it is really hard to think about Parker’s future--like how we will deal with Parker going to school with an IV pump or the possibility of Parker needing a double-lung & heart transplant... So, Jason and I have learned that we have to take it one day at a time. And each day that comes is one more day that we have to spend with Parker. He is such a special little boy and even though caring for him has been very challenging, I wouldn’t change it. I am a better and stronger person because of it.

Pulmonary Hypertension Awareness Month

November is Pulmonary Hypertension Awareness month, so there are many things going on right now to raise money and awareness for PH. You can help raise $50,000 for PH just by taking this brief online quiz. You'll test your knowledge about PH and secure a $10 donation to the Pulmonary Hypertension Association from Gilead. Go here to take the quiz:

www.pahconnect.com

Click on the button for "patients" to take a 6 question quiz about PH. When you finish, just fill in your name and e-mail, agree to the terms, and hit the "submit" button. When you've completed this, Gilead will donate $10 for your entry to the Pulmonary Hypertension Association. Only 1 entry per person is allowed. If you did it right, you should receive an e-mail from PAH Connect. Pretty simple thing to do for such a great cause!

Stay tuned this month for more blog posts about PH Awareness...

Parker Update

I realized that it has been a while since I posted a update about Parker. He is doing great! He now weighs 24.5 pounds and runs non-stop. He is getting stronger and stronger every day--he can even walk down the stairs by himself-- a BIG accomplishment! He still has physical therapy twice a month, and his therapist continues to be impressed by the progress he makes each visit. He is also talking, talking, talking! He can even say his name. We thought for a while he was going to need help with speech because he had a small delay, but now we feel he is doing just fine (one less thing to worry about!!!). He also loves to sing--some of his favorites are "The Alphabet song", "Row Row Row your Boat", and of course all the "Baby Signing Time" songs (which he also does the sign language to while singing--SO cute!) His CAP-C nurse, Lula, has been coming 3 days a week for 2 months now and it has really made a difference in our lives. Some days life almost seems normal! (or as close to normal as we can be...) Parker loves Lula and the time she devotes just to him each time she comes. Other than a few colds already this season, he is doing so good. He continues to amaze us each and every day and we are incredibly blessed to have him in our family.

Happy Halloween!

Fall Fun

I LOVE the fall in North Carolina! The crisp mornings and warm afternoons combined with the gorgeous, colorful leaves are things I really enjoy about living in the south. Over the weekend we took advantage of the nice weather and ate dinner outside a few times, played outside, and the kids rode their bikes. Even Parker has finally learned to ride his little motorized bike and he loves it!!! We also took the kids to pick out their pumpkins for Halloween--Kelsey always picks the biggest one :) They can hardly wait to carve them!

Sick already???

It is not even the middle of October yet and Connor, Jason, Parker and I have all been sick already! Is it just us or is everyone else getting sick too? We were really hoping for a "less sick" season this fall (compared to last year), but we're not off to a very good start. Poor Connor has actually been sick for an entire month--we have been to the doctor 5 times and he has missed 8 days of Kindergarten! I have even been contacted by the social worker at the school because he has missed so many days. Well, to top it all off, he was diagnosed with pneumonia today! He started his antibiotics as soon as we got home from the doctor's office--we hope they start working immediately. I just cringe every time I hear him cough because he sounds so bad. I hate it when my kids are sick and I can't fix the problem right away. I hope he gets feeling better SOON!!! And, I hope this is the beginning and the end of our sicknesses this fall/winter...

2009 Cure PH Golf Tournament

Yesterday was the 2009 Cure Pulmonary Hypertension Golf Tournament in Mocksville , NC. This year our own little Parker was asked to be the special honoree. All the donations made to this charity event were made in his name. Parker's name was embroidered on the golf shirts that were given to all the participants and a special T-shirt was made just for him. It was a unique opportunity for us to be part of this great effort to raise awareness and needed research funds for PH. We were overwhelmed with the generosity and support this event was given. 72 golfers showed up even though it was raining and played golf (in the rain) for 4 1/2 hours! When the golfers were finished (they were all soaked), we had dinner in the clubhouse where they had everything decorated in periwinkle (PH's color) and white. They also had a board with Parker's name as the honoree and a little slideshow of him. Parker thought it was pretty cool when everyone in the room clapped for him, even though he had no idea why! We haven't heard the final word on the amount that was donated, but I think it will be pretty close to the goal of $20,000. Thanks again to all of you who donated money to this event. We believe that someday there will be a cure for Pulmonary Hypertension and it is through your donations and events like this that we become closer to that cure. For more information about PH or to make a donation, visit www.phassociation.org.

There's Still Time!

The 2009 NC Cure Pulmonary Hypertension Golf Tournament is tomorrow and there's still time to make a donation. Parker is the special honoree this year, so all the donations for the tournament are made in his name. So far, $11,940 has been raised, but the goal is $20,000. If you can, please donate something for this very worthwhile cause. All proceeds from this event will be allocated by PHA to benefit efforts to find a cure for pulmonary hypertension. You can donate online here:

www.firstgiving.com/2009ncphgolf

Or you can donate by mail. Just send a check payable to "Pulmonary Hypertension Association" with a note on the memo line "2009 NC Cure PH Golf" to:

Pulmonary Hypertension Association (PHA)

801 Roeder Road, Suite 400

Silver Spring, MD 20910

Together, we CAN find a cure!

Extreme Makeover: Kelsey's Room Edition

Our birthday gift for Kelsey this year was a "makeover" of her room. She has had the same room since she was 2 years old, so we figured it was time for a new look! I wrote this really cheesy poem and tied it to a balloon:

Today is your birthday, turning 9 from 8,

So it’s a good time to redecorate!

New covers with stripes and polka dots,

We’re pretty sure you’ll like it a lot!

New pictures and paint for your wall,

Just might require a trip to the mall!

More space for your books and other stuff,

Will help keep your room clean enough.

A mirror and a lamp are accessories,

You can put them wherever you please!

This fun “make-over” of your room,

Is something you’ll like, we presume.

Now there is just one thing left to say,

We hope you have the best ever birthday!!!!

We have finished most of the makeover and it looks great! Kelsey loves it! The walls are a very pretty light yellow called "coconut scent". We still have a few things to add--a new headboard that we need to paint, curtains to make, and pictures for the wall--we'll get to those things eventually! Here are some pictures of her new room.

Pucker Up 4 PH

Recently our family was able to participate in a global campaign to boost awareness for Pulmonary Hypertension, called "Pucker Up 4 PH". Blue lips are a symptom experienced by some patients with PH as a result of low levels of oxygen in their blood. Many people with PH don't exhibit any outward signs of the disease, so the Blue kiss Logo was developed in 2007 to try and help improve awareness of the condition. So, we each painted our lips blue and then puckered up for the camera. Our pictures were submitted to www.puckerup4ph.com--check it out and see if you can find us! You can also submit your own "Pucker Up" picture to show your support. What a fun way to raise awareness for PH!

Birthday Wishes

Today is Kelsey's 9th birthday! We are so excited to celebrate this special day with her. Kelsey is a wonderful daughter and sister--we are so happy she is part of our family. We hope you have a great day, Kelsey! We love you!!!

A Nurse for Parker!

Parker recently qualified for some nursing and financial assistance through the state of North Carolina because of his pulmonary hypertension. We have been working on getting this assistance for the last 15 months. Parker will now have his very own private duty nurse coming 3 days a week for 4 hours each time to help care for him. This has been something we've been anticipating and dreading. It will be wonderful to have a small break from all the care that Parker requires, but at the same time, it is incredibly hard to turn over all that care that we have strictly been doing by ourselves for the last 18 months to a stranger with a nursing degree! We are hoping as we adjust to this, that it will be a good thing for all of us. Some of you may be wondering why we would even need a nurse, especially when we have managed without one for so long. Basically, Parker requires constant medical care and supervision. He takes 9 doses of medication at different times throughout each day. He has a central line IV in his chest that is connected to an infusion pump that he wears in a backpack--he must either wear the backpack or we have to hold it and follow him around. His IV medication has to be mixed and his pump changed every other day. His central line dressing has to be maintained and changed at least once a week. His oxygen saturation (the amount of oxygen in his blood) must be monitored daily. And he's 2! So, basically we rarely have any relief from his care. As one of the the case manager's we are working with said, "You are living in a pressure cooker; you won't realize this fully until you start to have some relief." So we are looking forward to that relief! Having nursing assistance is a HUGE blessing for us. We are so grateful for our Heavenly Father who is mindful of our needs and helps us get through each and every day. Parker's new nurse started on Tuesday--her name is Lula. Parker didn't want much to do with her the fisrt day until she sang the "Blue's Clues" song and then I think he figured she must be OK. They played with his toys and watched his favorite movies and when it was time for her to go, he said "Bye-Bye" and blew her a kiss--a good sign :) (I didn't dare leave the house yet...) On Wednesday, Parker was still a bit apprehensive about his new nurse, but he did let her give him 1 of his 4 medications (progress...), but he would NOT let her change his diaper and he had quite a tantrum about that. (I left for half an hour!) On Friday, Parker let Lula give him all 4 medications! I decided that I wasn't really ready to "leave" the house for the entire 4 hours, but I did tackle a big project (cleaning out our storage) so that I was still home, but Parker was in the nurse's care. They had a great time playing outside, going for a walk, having a snack, and watching movies. Lula didn't attempt a diaper change... All in good time, I suppose! So far, we really like nurse Lula. Hopefully Parker will become more comfortable with her being here to care for him (and hopefully I will too!!!). Maybe Jason and I will actually be able to go on a date once in a while since we now have a nurse that can care for Parker!

From Sidekick to Kindergartner!

My almost constant companion and sidekick for the last 5 years started Kindergarten today...sniff, sniff :( Connor has been SO excited to start Kindergarten and ride the bus--he has been asking me "Is it Friday yet?" for the last 2 weeks! Last night we read the book "The Night Before Kindergarten" and at the end it talks about how all the parents were crying. So I told Connor I might cry too. He seemed puzzled about that so I explained how much I was going to miss having him here with me all day. I'm not sure Connor had put starting Kindergarten and being away from Mom all day together, because he suddenly got very sad and he hugged me for about 5 minutes and said that he was going to miss me too. I told him everything would be great, though, because he was going to Kindergarten--it would be so cool and so much fun that he would forget all about me. As he climbed into bed, he was still frowning, so I asked him if he was sad and he threw himself into my shoulder and said "YES!!!" and started to cry, but just for a few seconds, because I reminded him once again how great school would be. He woke up this morning and was dressed and ready to go in record time. Then he said to me, "When I was in my bed last night, I was worried about you." (How cute is that?) I assured him that I would be just fine, even if I cried a little bit.  We are so proud and excited for him and we know that he is going to love Kindergarten.