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

Update on Jacob

Thank you to everyone who has been so supportive during this difficult time for our family. I'm so grateful for the many many words of encouragement and support, and to know of all the prayers being offered in Jacob's behalf. He is now on his 12th day in the hospital with no end in sight. He seems to be running into one complication after another and just when I think we've hit the bottom, I find out it can get worse. Right now they're suspecting he may have picked up the flu at the hospital (most likely, swine flu) because of his spiking fevers the past three days, and last night be began vomiting. They did a swab last night and will know the results in a few days. Once he recovers from this virus and the pneumonia (which was confirmed positive in a chest x-ray yesterday), they will decide what treatment will be best to treat the Crohn's flare up. On a positive note, last they checked, his red blood cell count was up from 8.4 to 8.6. Normal range is between 10-14. It's good to see it coming up because if it dips into the 7's, he would need a blood transfusion. We are anxiously awaiting the PICC line because his weight continues to decline. WIth a PICC line in place, he can be nourished through it. Despite the heavy weight of this trial, we truly feel of your love and feel so blessed to have such wonderful friends and family to buoy us up along the way.

Our Little Patient

Hang in there, little guy!

Grandpa Taylor & Jacob

Big brother, Ethan, comes to visit.

Finally on his 5th day, he is allowed in the play room.

Last Tuesday our little Jacob was admitted to the hospital. He has been quite sick for some time and has not been able to recover on his own. He stopped gaining weight back in April because his body was focusing all of its energy on fighting the ulcers and inflammation lining his large intestine. A colonoscopy revealed that he most likely has ulcerative colitis, a disease that generally affects older teenagers and adults. Jacob has been the most patient little patient. He has endured more than any small child should ever have to go through. He had an IV in his right hand for the first 5 days of his stay, and then they transfered it to his foot yesterday. He is happy to use both hands, but has a hard time walking around with a big board on his foot. I can't handle getting into specifics of other tests and procedures they have done to him because it makes me feel too depressed. Thank you to everyone who is praying for our little Jacob and our family. This has been the most trying experience of our lives and we wouldn't be able to endure it without the support of our family and friends. Jacob is still in the hospital as of today. He has a CT scan scheduled for tomorrow. I hope he is well enough to return home this week. Please keep him in your prayers.

Syvanah's 3rd Birthday Party

My mom, Ethan, Jacob, and I drove out to Mesa to celebrate my niece's 3rd birthday. She had a Hawaiian themed birthday party which turned out really fun.

Jacob's Walking!

Ethan's First Day of Preschool

Our handsome big boy! You can see a picture of me on the collage in the background. That's funny, I just noticed that! :)

Ethan just started preschool today and loves it! It's so nice to have an activity for him to look forward to twice a week. He's such a ball of energy and thrives when he has somewhere to expend it. I didn't get emotional dropping him off and he didn't seem to care when I left. I guess we were both very ready for him to start school. It sounds like he got along with his classmates today and had fun participating in the different activities his teachers shared. He said his teacher told him all about ladybugs and he seemed really excited about it.

Jacob and I dropping Ethan off in his classroom

The rainbow classroom. Ethan has four girls and eight boys in his class!

Great Times With The Longs

We recently had our annual Long gathering at Tom and Jeannette's and thoroughly enjoyed catching up with everyone. Our kids had a blast connecting with their (2nd?) cousins and Ethan insisted that we have to go back to Tom and Jeannette's house again really soon. We feel blessed to be a part of such a great family!