Summer is officially here and it started off with a bang. The last day of school was also Dylan's 6th birthday. He spent the day with all of his friends and "graduated" from kindergarten. He loved every minute of it. After school was over we met up at the park with Dylan's friend Daniel for some extended fun. It is so wonderful to watch my little guy be normal and enjoy his birthday like any other kid. Dylan had wanted a guitar-shaped birthday cake and thanks to a cake decorating kit by Duff, from Ace of Cakes, it was possible. I am not a professional baker by any stretch of the imagination, but it turned out okay and Dylan loved it which is all that matters. After the cake was made we headed out for dinner. Dylan had his favorite meal, sushi! The kid just gobbles up his carburetor rolls, edemame, and cucumber salad everytime. I truly believe if he could have it everyday he would.
This year Father's day meant even more to us. I feel so blessed to have such an amazing man as the father of my children. Noah truly made the ultimate sacrifice. He laid his life on the line to ensure his child would continue his own. There is no better way for a father to confess his love and now we have another one on the way that will make a wonderful addition to this family. I could not think of a better man to raise another child with. To celebrate the day we were given wonderful tickets to the A's vs. Giants game. It was just another wonderful gift given to Dylan and again we are reminded how fortunate we are to have caring people in our lives. We met up early with our
very close friends the Keegan's and Dylan's future wife, Rylie. We tailgated for a little while before the game and ate some hotdogs. The tickets we had were amazing. We were only two rows up from home plate and were right in the action. While there Dylan got a signed ball from, Grant Balfour, one of the players from the A's team. Later while Dylan and Noah were walking around they met Sergio Romo from the Giants. He was climbing down the stairs with Dylan following every step Dylan took. Dylan thought it was really funny and he got a good laugh out of it. Sergio then wished Noah a happy father's day and went back to the game. To say the least it was a great day.
This year Father's day meant even more to us. I feel so blessed to have such an amazing man as the father of my children. Noah truly made the ultimate sacrifice. He laid his life on the line to ensure his child would continue his own. There is no better way for a father to confess his love and now we have another one on the way that will make a wonderful addition to this family. I could not think of a better man to raise another child with. To celebrate the day we were given wonderful tickets to the A's vs. Giants game. It was just another wonderful gift given to Dylan and again we are reminded how fortunate we are to have caring people in our lives. We met up early with our
very close friends the Keegan's and Dylan's future wife, Rylie. We tailgated for a little while before the game and ate some hotdogs. The tickets we had were amazing. We were only two rows up from home plate and were right in the action. While there Dylan got a signed ball from, Grant Balfour, one of the players from the A's team. Later while Dylan and Noah were walking around they met Sergio Romo from the Giants. He was climbing down the stairs with Dylan following every step Dylan took. Dylan thought it was really funny and he got a good laugh out of it. Sergio then wished Noah a happy father's day and went back to the game. To say the least it was a great day.
Dylan's health has been very stable since his last bout with pneumonia. It took a very long time for it to go completely away but his system is pretty strong considering the medication he takes. I am so glad the warm weather is here and hoping the flus and colds stay away for a long time. Dylan has gotten his labs done every two weeks since April and they are consistently good. His liver is happy and thriving and our only issue thus far is the nasty, persistent EBV. His levels are pretty low, but higher than we want so we are cautiously watching and adjusting medications as needed. He was seen at Stanford yesterday for his first visit there since April. The doctors are very pleased with his lab work. All his liver function tests are well within normal range and he continues to grow like a weed. All of this makes for a very happy mommy. The doctors also told Dylan he no longer has to take his magnesium supplement and this makes for a very happy Dylan. The medication list is dwindling down. He is only on Prograf, Valcyte, Zyrtec and a multivitamin. It is crazy to think he is doing so well only four months out from transplant. I hold my breath a little when I think these thoughts. I don't want to jinx anything. For now Dylan is being moved to labs once a month and clinic appointments will still be every other month alternating between Kaiser and Stanford. So it seems for Dylan summer is a break from school and doctors.
As some of you may know last week Dylan's cousin showed everyone what this family is made of again. Natalie
was born with a rare congenital defect of the heart, Hypoplastic Left Heart Syndrome. She underwent two separate surgeries by the time she was two months old. Last week was her third and hopefully last surgery in the
series of three needed. After our visit at Stanford we made a stop at UCSF to visit the brave little girl. With Hello Kitty gear in hand Dylan tried to help cheer her up as she is still not feeling up to par. Although she is stable it is still
uncertain how much longer she will be staying inpatient. If possible please say a little prayer that Nat is out of there soon and feeling better even faster.
-Amber
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