Happy 2nd Birthday, Jacob!

I can't believe our little Jacob is already two! He's turning into such a big boy. Here are a few shots from his two-year-old photo shoot, birthday party, and a bonus picture from Father's Day. We love Jacob so much!

Art Fair, Park, Play, & Oak Glen

I have a few things to catch up from the past couple of weeks. First of all, I want to show off Ethan's artwork from the art fair at his preschool. Along the top row of the collage from left to right: Ethan's gold star and a picture of him holding his puppet that he made of Bruce from Finding Nemo, Ethan posing in front of his easel painting with the green handprint, Ethan pointing to his square on his class quilt (Grandma Judy would be proud!). Along the bottom row: Ethan showing us his Bruce puppet, a picture of Ethan working on his easel painting, and the last picture is of Josh, Jacob and Ethan creating a piece of art.

 

This next collage includes some pictures taken from the park. Ethan and Josh were there, too. Josh was the cameraman and Ethan was always on the go and too hard to catch on camera.

 

Here are some shots of the boys playing out on the porch together.

Here is a cute shot I took with my phone camera of Jacob at our favorite park. We spend a lot of time at parks, since Jacob cannot safely play at the playground right in front of our house due to the wood chip ground. The mold that grows in wood chips is very dangerous for CGD patients. Unfortunately, Redlands' parks and schools all use them. Loma Linda, however, uses the rubber ground, which is safer for Jacob.

This last batch of pictures and the video below are from Ethan's preschool field trip to Riley's Farm in Oak Glen yesterday.  I signed up to be a driver and got a feel for what it must be like to be a bus driver.  I had six preschoolers (with their carseats) squished into the Pilot and another mom as my navigator.  Ethan was certainly by far the loudest voice in the car, but the noise of the other kids just added to the chaos.  Somehow we managed the trip safely and the kids had a lot of fun.  Top row from left to right: kids sanitizing their hands to get ready for making apple cider, the kids sitting in front of a log cabin after exploring the inside, the kids getting loaded for their hayride.  They learned to shout "wagons ho" to get the horses to start walking.  Along the bottom: a close up of Ethan on the wagon, Ethan with a few of his classmates, and lastly, Ethan getting ready to throw his apple into the apple cider press.

Here is Ethan tossing his apple in.  Each child got about 4 or 5 turns. 

Happy Easter 2010

 

I know it's a miracle that I'm actually updating our blog. I almost wrote it off as a lost cause, but found a little motivation to add something to it tonight. My motivation? My boys are just so stinkin' adorable! Hey, whatever works! Anyway, here is a collage of decorating eggs and doing an egg hunt at my parents' house last weekend. The weather was perfect and the boys had a blast!

Yes, I do love dressing my boys in matching outfits, and what's even better is that they love wearing matching outfits!  I figure I may as well take advantage of their compliance while they think it is cool.  These are their Easter shirts.  They just LOVE saying cheese for the camera!  So cute!

My Handsome Boys

The other day I was looking at Ethan's preschool picture and I had one of those moments when I realized how fast he is growing up. The thought tugged on my tender mother heart, and I realized how quickly these moments are going to pass. I vowed to appreciate each day and each experience with my sons to the fullest. I feel so blessed to have these two precious boys in my life.

Merry Christmas

 

This year Santa left the boys a train table and a drawing easel, among other things. The kids were so excited to see what they got and Santa was really feeling good about the decisions on which toys he gave them. Now, Santa's starting to wonder if these large toys were a bit too large for our small house. Where to store them when not in use? Oh well, they're only kids once, might as well enjoy, right? I mean, just look at those cute faces!

Christmas Eve Dinner at In-N-Out

These pictures were just so cute I couldn't pass up this chance to share them.

Ethan's Preschool Christmas Show

Ethan was so adorable! He knew his song really well and was close to a microphone so his voice stood out from the other children. There is a part of the song that says "Jesus is coming, open your heart," and if you listen carefully to the video around 40 seconds in, you can hear him say "Jesus is coming, open your silly heart." He's such a little jokester! (Lyrics below... or at least what we think they were singing.)

Jesus Is Coming

[Unintelligible]

Time to get ready

I'll do my part

Jesus is coming

Open your heart

Sing Hosanna

Jesus is coming

Time to get ready

Open your heart

[Unintelligible]

Someone is coming

Wait and see

[Unintelligible]

I'll do my part

Jesus is coming

Open your [silly] heart

Sing Hosanna

Jesus is coming

Time to get ready

Open your heart

Josh's Birthday and Stocking Stuffers

We had an enjoyable birthday dinner at Josh's parents house to celebrate his special day. It's hard to believe I've known Josh for almost 12 years now. Time has flown by so fast. After Josh's birthday dinner, we opened our stocking stuffers with his family. As you can see from the collage, it's all about the kids at Christmas. Josh teased that they were breaking into their stocking stuffers before he had even finished reading his birthday card. Sorry, honey! It was a really fun night for all.

Christmas Photo Shoot at the Redlands Temple

As always, you can double click the image to see the smaller pictures in more detail.

Thanksgiving

Our boys love their cousins.

At Grandma & Grandpa Long's House

Best Friends

These two little guys are so cute! I love catching these moments when they are truly enjoying playing together.

Sharing the iPod

Jacob recently discovered my iPod, and since he and Ethan love music, they insist on listening to mommy's playlist any time they find the iPod laying around. Cute boys!

Cute Jacob

Boating on Bountiful

Today was my first time out on my dad's recently purchased boat. He named it Bountiful, after the hometown of his childhood. It really is a beautiful boat and it's so relaxing to go out into the ocean. Included in the collage are photos of my gorgeous mother, my beautiful sister Alyse, my cute little seafaring Ethan, my dad the captain, the backside of Spencer (lol, sorry Spencer!), silly sea lions squished onto a buoy, a sailboat, the Queen Mary, and a lighthouse that marks the edge of the harbor. It was such an amazing day! Thanks to my parents for the invitation, to Spencer and Alyse for driving us, and to my eternal sweetheart, Josh, for taking such good care of Jacob at home. Love you guys!

Halloween

Thanks to my wonderful in-laws for babysitting Jacob, Josh and I were able to take Ethan to our church's trunk or treat party this year. He dressed in his favorite Mater the Tow Truck costume and got tons of sugary goodness. A lot of my pictures are of Jacob and Ethan admiring their spoils after we got home. It was so funny to watch them sorting through all the candy. Jacob didn't even realize what it was at first, he was just having fun squishing and crunching all the wrappers. Ethan, however, was shoveling it in his little mouth as fast as he could. Our jack-o-lantern may need an explanation for most people. It's a character from the internet cartoon Homestar Runner named Strong Mad... did I get that right, honey? Josh did a great job and received the award for the most intricately carved pumpkin at the trunk or treat. We had a great time together. My sisters Alyse and Mackenzy were even able to come out to join us for the evening. We are seriously blessed with amazing family members. I have no idea where I'd be without such loving people in my life.

Ethan's Big Day

It has taken me quite some time to get this posted because of everything that has happened recently with Jacob. We had a really fun celebration for Ethan's birthday shortly before Jacob was admitted to the hospital. Ethan had so much fun being with his beloved extended family. This year I asked him if he wanted to have a family party or a friends party. He chose a family party. We did, however, invite his favorite neighbor friend to join in the fun as well. The two of them kept the guests quite entertained as they ran excitedly around the house and played wild games with the balloons. I had no need to lead our guests in any games since everyone seemed content with watching Ethan and his buddy play. They were so delighted with everything! Such sweet kids. I feel so blessed to be Ethan and Jacob's mommy. Ethan is growing up into such a loving and happy little guy. He is a wonderful big brother and such a delight to have in our family. His energy keeps daily life interesting for all of us and we love him so much! Happy Birthday to our first born!

Before and After Shots

Just wanted to share the amazing transformation in our little Jacob from the beginning of his hospital stay to when he first arrived home.

Before

After: so plump and happy, with color in his cheeks!

Recovery

Sorry to have taken a while to include this update; we have been enjoying being home together again. Jacob was discharged from the hospital last week, making his stay a total of four weeks. We have been busy with follow up appointments, which will become normal for our family now since Jacob's condition is chronic. In a few weeks we have an appointment with a specialist at Children's Hospital in L.A. It will be nice to talk to a doctor who actually has experience working with CGD patients.

Thanks again to everyone for being so supportive of our family. We feel blessed to have such wonderful family and friends.

Seeing the Light

Jacob got his PICC line in on Monday after a very emotional day of not allowing him to eat. There are only two nurses at Kaiser Fontana certified in PICC insertion, so we had to wait all day before the team of doctors and nurses could assemble for the procedure. In the mean time, Jacob couldn't eat because he had to go 6 hours without food or drink prior to sedation, and we were told they would try to do the procedure yesterday morning, not evening. Poor Jacob had to go without food or drink for nearly 24 hours.

Last Sunday, a blood test for IBDs (inflammatory bowel diseases, including Crohn's disease and ulcerative colitis) came back negative. However, the test for CGD came back positive.

Now that Jacob has been properly diagnosed, he is receiving the best care the doctors can provide. He received a blood transfusion Wednesday night after finding out that his hemoglobin was at a shockingly low 7.4. Thursday morning, Jacob was a new baby! He was so happy and playful. The transfusion was a success, bringing his hemoglobin level up to 11. Thursday night he began receiving his TPN (a nutritional supplement) through his PICC line. A healthy person's nutritional level is supposed to be between a 20-40; Jacob was at an 8. Yesterday I noticed a definite increase in appetite and I hope that he quickly regains a healthy nutritional level. Jacob has been on a mild dose of steriods for the past three days to help calm down the colitis. We should know by next week or so if the treatment is enough to cure the colitis. Once his diarrhea is gone and he is steadily gaining weight back, we will be discharged from the hospital. Jacob is also taking an iron supplement to maintain a healthy hemoglobin level; and a sulpha drug, and an antifungal drug twice a day to help prevent any future infections that could land us back in the hospital. (As a reminder, Jacob doesn't have the specific disease ulcerative colitis, but colitis is a term that accurately describes his gastrointestinal problems.) CGD is a hereditary white blood cell defect which means Jacob is more prone to infections.

Josh and I have both sent in blood to be tested to see who is the carrier of CGD. The doctors also want to test Ethan for CGD because it is more common in boys.

According to one report, CGD affects only 1 in 200,000 people in the United States with only 20 cases diagnosed each year. Another source says that as few as 1 in 1,000,000 people has CGD.

Here's some reading material on CGD:
http://children.webmd.com/granulomatous-disease-chronic-10639
http://www.nlm.nih.gov/medlineplus/ency/article/001239.htm
http://en.wikipedia.org/wiki/Chronic_granulomatous_disease

Thank you for your earnest prayers in our behalf. Although Jacob's diagnosis was a devastating shock to us all, we have been strengthened and uplifted by everyone's prayers, love, and support. Jacob is looking better everyday. Now we're just hoping for the very best results with the steroid treatment so we can get our little angel home.

Here is a meal calendar for anyone who is interested: https://spreadsheets.google.com/ccc?key=tAAegH4xOzJJ6wWljCxIz0Q