Grammy Came to Visit

Danny's mom came to visit for two days. It was so fun to have her in town. Scott loves to play with Grammy and Tyler loves to be held by her. It was great having her here to help with Scott and Tyler. Danny was able to work on his motorcycle and I had a much easier time going to Dr. appointments on Wednesday and Thursday. We miss you Grammy! Whenever we talk about Grammy coming Scott gets a sad face and says "bye-bye" while waving. We have to remind him she'll be back soon for Tyler's surgery.

Dance Dance Dance

We went to the Perry's house for the superbowl and Scott, Will, Ben and Elli had so much fun dancing while Danny played the piano. Scott also liked to break dance at times. Although I have no pictures from Sunday, Luke came over and danced with Scott on Tuesday. This picture doesn't do a very good job showing off their jam session. Scott loves playing with Luke.

UCSF Liver Appt

Saw Dr. Rosenthal today who thinks Tyler looks SOOO much better. The nurse said he looks like a totally different baby than how Susan explained him to be. Dr. Rosenthal said that he would be surprised if his bili counts were over 2, even though the labs might take a while to come down. He matched the lab the first week he guessed. He said to tell the cardiology people to make sure they knew who fixed up Tyler before his surgery. So that was good news. They are concerned about his weight gain and entertaining a feeding tube at night that we could take out during the day. We shall see. We saw Jolene, a baby, who had the norwood the same week as Tyler. She has the Glenn tomorrow and we pray for the McMullens and baby Jolene. She looks great and I know she will do fine. They told her that the surgery is usually much easier than the Norwood and if all goes well she could be in the ICU for 1 day and step-down for 1 week...that is in a perfect world and we all know Tyler likes to have us ride a few rollercoasters and take us on some joy rides along the way. I am planning that we will have a longer stay. A lot depends on what he needs fixed as well. So things are going well. He is still sleeping quite a bit and much happier than the first 4 months of his life.

Tyler

Weight gain = 0 oz. Total = 11 lbs. Same weight for 4 weeks. He isn't gaining weight since his heart is working so hard and using calories to pump. This past week he has been sleeping more and more. When he cried all the time, we wished he would just sleep. Now that he is sleeping all the time we wish he were up. The doctor said to expect him to sleep more and more as the weeks go on prior to his surgery. He said he is very sick, his heart is tired and he needs his surgery. When he is up he sure is cute and smiling. We love him so very much!! I guess I will enjoy these next couple of weeks of relaxation and sleep. He is 25% for height and his head growth is doing well which is great news. They said weight is the first to decline. His color is getting back to normal, which is also great news and he isn't in the GI distress he has been in since he was a baby. I think his bile/liver issues are finally getting better. 3 more weeks until the Glenn. It is funny how we are looking forward to his heart surgery. Insurance didn't cover his formula, but thanks to Brynn, we got it off Ebay. Thanks for the tip!!

Is this normal??

Scott applying gloss... Eyeshadow...I was a little worried about him poking my eye out.
And the final result... I am glad that he cares about our appearance.

Thank You!!

I am reading Glimpes Into the Life and Heart of Marjorie Hinckley. She says, "When you finally develop a little gratitude in your heart, make up your mind to express it. Appreciation unexpressed insn't appreciation. If you can't find someone to say thank you to for something, just take a look at your toothbrush and say, 'thank you for being. You are a wonderful little gadget." I feel fortunate that I have so many people to say thank and congratulate.

Thank you JANINE & GLEN on your willingness to fly all the way to California to give us a break.

MELISSA...getting into MIT for your MBA. Incredible!!

EMILY..you are getting married! Congrats!

Thank you DAYNA for being willing to watch Tyler from 9-12 midnight. Even though we got stuck in the ER, you came to the hospital with great food & arms to hold our little guy so we could eat.

Thank you DANNY for being a great husband and the best dad to Tyler and Scott.

Congratulations CHASE on getting into Georgetown for your JD/LLM!

Congrats VICTORY & DAN! Quinn is so cute and you have taught me the importance of patience these past 9 months of pregnancy.

Thanks MOM & DAD. You cook us great food, are shoulders to lean on and you love our kids unconditionally.

Thank you DENAE for sharing your story about why we don't always receive our righteous desires. I have a better understanding of a loving Heavenly Father because of you

Thank you BEAU. We talked about reference in church this month. Beau taught Luke about sitting still in church. He probably thought he was just teaching Luke, his 2 year old, but it was a great lesson for me as well.

Thank you BOGNERS. You are always willing to help with the kids and fill us with wisdom!

Congratulations JENNY & KEITH...Little Neil is adorable!!

Thank you LAUREL for your friendship, always checking in on Tyler and making me laugh.

TYLER...he reminds me not to complain and be grateful for all I have.

Congratulations on turning 1. Happy Birthday SIENA!!

Thank you BRYNN...you are such a great heart mommy. I look up to you and your patience prior to the Glenn as we face a surgery set-back.

Congrats KRISTIN & JEREMY! Audrey is beautiful and I am soo impressed with your attitute towards needing a C-section. You were full of gratitude and looked at the positives in a situation that most would have dwelt on the negative.

Thank you SCOTT! You remind me to laugh and love.

Thank you Susan, Anne, Dr. Rosenthal, Dr. Cooper, Dr. Hahn and so many who have helped Tyler. What would we do without you?

Thank you KRISTY! You are always so positive. I admire how you somehow found time to check on little Tyler on a day that you had every right to just think about what you were going through.

Thank you HEATHER! You have dealt with so many health issues this past year and never once complained or asked "why me?" I admire and look up to you so much. You give me strength and constanlty teach me to keep a positive attitude. I love you and feel so lucky to have you as my sister

Thank you KELLI. I was held up at the doctors and couldn't watch a friends baby. You came to my rescue!

Congratulations PARIS, ALIX, ANNIE, ELENORE, ELAINA, NOR, LISA, MARDEE and KATIE on your bumps.

EVERYONE who has thought and prayed for Tyler and our family. Thank you!

"Thank you" is a wonderful phrase. Use it. It will add stature to your soul. Never let a day go by without saying thank you to someone for something--and especially to your Heavenly Father.

Lab Results

Tyler's AST, ALT, GGT have all come down nicely which is a good sign. It may take a few weeks for his bilirubin to trend downward which is currently at 11. They will continue to monitor his liver once a week at UCSF until his heart surgery. He was up about every 1.5 hours last night which was a good thing so he could eat. He wasn't crying that much which makes night feedings fine. The pregestimil seems to give a better result with the color and consistency of his poop. Hopefully it will help him absorb some fat. It took him a while yesterday to start eating it which they say is normal This is Scott 1 year ago discovering his tongue. I imagine this is what Tyler feels like with his new formula.