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.

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

Yesterday we learned the true meaning of having an immunosuppressed child. Dylan had a little bit of a cold about two weeks ago and had some croup with it. We treated the croup with a single dose of Dexamethasone (a steroid used to treat inflammation in the airway). I thought we had escaped anything serious and went on about our usual business. Dylan returned to school and seemed to be doing okay. During the weekend Dylan continued to cough and started complaining that "stuff" was coming up when he did. My first thought was just something post nasal and it was not a big deal. We have always been told that coughs can last for weeks after a cold and not to be worried. However, Monday night things took a turn in the wrong direction. 

There is something to be said about a parent's intuition. Noah and I are not doctors and only know Dylan, but over the years we have learned to read this child like a book. With Dylan's anti-rejection medication his body responds differently to illness. Most children get a high fever when they are fighting something serious off. With Dylan though this is not always the case. His system is so suppressed that his body can't even produce a fever. We noticed his cough was getting worse. It was wet, hacking and causing him to go into coughing fits to the point of gagging. I listened to his lungs with a stethoscope and heard no wheezing so I knew it was not his asthma. After about 4 hours of on and off coughing Monday night I made the decision that Dylan would be visiting the doctor and not attending school. Given Dylan's current medical status he is highly prone to developing pneumonia which can be life threatening. So first thing in the morning I called to make an appointment. To my disappointment Dylan's regular doctor was out for the week.

Having a kid like Dylan you form bonds with the doctors who care for him. We have friendships with these people and we trust in them. Every time Dylan sees a new doctor I  have a bit of a panic attack. There is NOTHING simple about my child. There never has been and unfortunately there never will be. Yes, Dylan will get normal kid stuff and every time he gets sick it is not necessarily an emergency, but it CAN be. So when I see an new doctor with him I am on defense mode. Don't get me wrong I know they are doctors and they went to med school too, but they don't know Dylan. Dylan's regular doctor, Dr. Morales, can look at Dylan and know if something is wrong or not. He has cared for my little guy since he was just about one. I have had confrontations with doctors in the past. The arrogant doctors who feel they know my child better than I do because they went to school and I didn't. While they learn quickly who the boss is it is still an unnerving place to be in when you are worried for your child's well being. 

I was pleasantly surprised yesterday. This doctor put my worries at ease right away. He told me that we would be making all decisions together and that what ever it was it would be treated aggressively given Dylan's medical history. He heard some popping and crackling in Dylan's lower left lobe and suggested we do a chest x-ray to see how bad things looked inside. The verdict...pneumonia. His x-ray looked clear which means we caught this in the very early stages. Dylan was put on a 5 day course of Zithromax. This particular antibiotic works very well at fighting pneumonia, but there is a side affect. It can raise levels of Dylan's Prograf. The anti-rejection medication that got us here in the first place. With a raise the level of this medication it makes his body's immune system even weaker. In situations like this though you have to out weigh the risk versus benefit. 

On top of all of this Dylan's EBV is positive again. It is not terribly high, only at about 600 copies, but still positive. Dylan is back on the anti-viral medication twice a day. We will repeat the labs tomorrow to check the levels as well as the Prograf levels. I am really hoping that everything looks good, but I am also expecting things to be off. I guess we will wait and see. 

-Amber