Ooops.

Carver likes to kick the water with his feet when he takes a bath, but he's certainly not big enough to splash it all over his face! He says, "Geewiz" I hate getting my face washed anyway...now I have to get cleaned all over again!"

Goodmorning All

The kids and I did have a great time at the Sprint Center Arena last night thanks to the Ronald McDonald House. The "Elmo Makes Music" musical featured Elmo, Abby Cadabby, Zoe, Rosita, Bert, Ernie, Telly, a Honker Monster, The Count, Oscar the Grouch, Oscar's relative, Baby Bear and a lead singer named Jenni. I think that was all. The life-sized characters looked exactly like the puppets on Sesame Street...colors, fur and all! The mouths even moved in time which I am still facinated by (kid at heart). Kaylynn needed a drink during the break and I explained that the cast needed a rest too. Then, during the second half she asked where all the characters were--only two were on stage. She said, "Are they getting a drink?" Granton was also excited and stayed glued to the performance like a statue for the first half.

Anyway, the real reason I wanted to post was to say that I heard a special word today for the moment we are in. First, I relearned that God uses family, pastors, and other christians to deliver messages that we need to hear, but mostly he speaks to me through his word. Somrtimes, I get mad because I can't hear Him only to discover I'm not listening to His word. With our anxious thoughts toward the future, He reminded me that God will supply all your needs according to his riches in glory. As long as Granton needs his medecine I can trust that promise that he will provide it for him. We are continuing to trust in Him through our journey and to help our kids see where our trust lies, as well. Also, I have thought about several people in my family or community who have had to deal with cancer or illness that requires sleepless nights, hospital visits and "the yuckies" all around.  I am sorry for what you have had to go through and pray that God makes you stronger each day.

Love,
Jenni

Jenni and the kids are at the Sprint Center watching Elmo and all his friends. We got free tickets from the Ronny Mac House. This is a wonderful place. So Carver and I are geting some bonding time that he is sleeping through. He and Granton both had a lot of appointments on Thursday. Carver's went great. Actually, I don't know if I have ever herd the doctors act so positive. He still has a lot that could go wrong but things are looking good. As for Granton, we did not really find out anything we did not already know. Basicly, his B cells are not doing what they should and they don't think this will change. Granton gets IVIG to make up for this. We basicly have two paths we can go down at this time. We can continue to give Granton IVIG and he can rely on it for the rest of his life or we can attempt another transplant. This is not a decision we need to make right now. However, the older Granton gets the more complications he could have with a transplant. Right now he is doing great and we are going to leave things alone, at least for a while, but there are things to think about down the road. What if Granton's first transplant fades? Will he want to work in a country some day that does not have his meds? Also, the doctors fear he will choose to stop taking IVIG when he is 18, 19 or something and on his own. They see kids do this all the time as most young men think they are bulletproof and don't need anything. That is not one of my main concerns but I do know he could be limited to needing a medication for the rest of his life and I don't take that lightly. Additionally, as he gets older Granton will have more and more say as to these decisions. Another, thing to consider is there could be a new advancement in gene therapy in the future and we would have an additional option. This is just the tip of the isberg of things Jenni and I have concidered. I would like to add that I know God is in control and my ways are not his ways. I can't pretend to act like I know or even understand his plans. That being said, I have learned more now than ever before that Granton is a walking miracle and I just can't see God doing anything halfway. Anyway, that is the latest. The bottom line is Jenni and I have three wonderful kids who feel great and are very happy. We are living in a place that blesses us by showing us how luckly we are. There are so many very very hard situations all around us here. I am constantly reminded of how much better things are now as apposed to almost four years ago when we were constantly given no hope. We are a long, long way from that place and I can't think the Lord enough. Thanks for following our story and thank you, thank you, thank you for the continued prayers. The kids are back from visiting Elmo so I will get back to play time.

B Cell Report

I received a letter and spoke with a doctor from Seattle concerning Granton's bcell test. It turns out that his b cells are not responding to the T cells--as we guessed. He will either stay on IVIG the rest of his life or get another transplant. Daniel and I have talked about waiting until Granton is old enough to have some input of his own before we decide to get another transplant. In fact, we learned of a family in Florida with a very similar case to ours. They even had a second baby with SCID. Anyway, the doctor said that when their first son turned 7 or 8 he agreed to be transplanted again. Actually, his graft was starting to fade, as well, due to the lower conditioning (chemotherapy) he received like Granton. I asked the doctor if she expected the second graft to fade over time, too. She didn't know. I'm guessing that the amount of conditioning for the transplant has a lot to do with it's lifespan.

Also, when I asked about Granton's b cells coming back on their own she said that it is not likely, especially this late in the game. That is actually a relief for me to know since I've been thinking that they possibly could. The bacteria phage is confirmation of this. And, she said that hospitals are starting to screen more babies for SCID...pretty soon every state will legally have to. In California 1 in 50,000 babies are diagnosed with SCID and the disease is not as rare as it used to be.

So, we definitely got some good answers and will keep doing what we've been doing...trusting in God and in the great doctors he's provided for our family.

Jenni

Appointment

Carver had a good appointment today. His platelets are now going up on their own! They are at 50, 000. Doctors like to see them above 20. His ANC was above 1000 and his hgb was 10.4 up from 7...he received blood on monday. His donor blood type AB is showing up now.

Also, we will find out tomorrow what Granton's test results are on his b cells...this is the bacteria phage that he took two trips to Seattle for.

I am still trying to find the best recipe for Mississippi Mud Cake. The lady who made it for the house gave me the directions and ingredients off the top of her head but not the measurements. My computer keeps freezing about the time I find a good one...maybe this is a sign. ; )  

Chocolate cake in a baking dish with a layer of cream cheese, cocoa, sugar and real whipping cream mixed together on top. Then, pour a layer of melted chocolate chips and whipping cream on top of that. Last, she had whipped cream and chocolate shavings. I can't think of a dessert that tastes much better than this!

We are still praying for Paxten and her family, as well.

Jenni

The 99%

I just wanted to pass on a quick report. Carver is doing well in the Ronny Mac house. Jenni says he is enjoying long naps with no one waking him up for his blood pressure check. We are still trying to get his tac. level to stay consistant but it does not seem to be any big deal. The big deal is that his test showed 99% engraftment. He still does not have a normal immune system but what he has is 99% from the donor so it is working at 99%. Good news. Please keep praying because we are not all the way out of the woods yet. However, we are on our way. Also, keep the little baby Jenni told you about in the last post in your prayers as well. The child is stable and showing slow improvment but is still on an oscillator in the PICU. Very hard stuff for that family. But it is not something to worry about, it is something to pray about.

Prayer Alert

Our neighbor has leukemia. She is only a year and a half old. She had a relapse this year during a chemotherapy treatment. She has been in a painful battle with her cancer. Her parents never leave her side. They have been faithful to stay during many horrific moments. Tonight they are in the picu. Their daughter coded. Please lift her up in prayer. Her name is Paxten Pearson. You can visit her website on Caringbridge.org.

All Smiles and Thank Yous

We are sending smiles with lots of love and appreciation!! Carver is a happy boy tonight watching football with Mom. He's also enjoyed his swing today as we pack our bags. Hope to have a smooth transition to Ronnie Mac waiting for his immune system to stabilize. Thank You.

Jenni

We Did It!

The doctors came in with no gowns or masks this morning on rounds! Carver will get to go to the Ronald McDonald House on Wednesday! He does not have to wear a mask, but he will need to be covered with a blanket. Carver will still be immune suppressed until day 100. So, we have to be extra careful by washing hands and staying healthy. After day 100 (sometime in March) he won't be taking the immune suppression and he can get out more. We will probably expose him to normal life sparingly and cautiously until he is two. But, he definitely will be out from under isolation. Three Cheers for Carver!

Jenni

Getting better day by day

Mr. Carver just finished his bath and as you may have noticed from his last picture these things make him ticked.  However, Jenni is calming him down and he will be a happy man before we know it.  I know it has been a week since the last post.  Fortunately, not much is changing very fast.  Carver, is getting better a little every day.  His bottom is where I can see the biggest improvement.  It does not bleed anymore and he does not start crying as soon as he poops anymore either.  Carver does still need to get different types of blood boosters but he does not seem to need them as often. Of course we just keep praying that his numbers get to the places the doctors want them. Another, improvement is the little man is not plugged up the the pump tower.  It is so nice to hold him and not have to worry about any tubes.  This is also good because his Hickman line is just barely in far enough.  We are babying that thing as much as we can because we don't want him to have to get pokes, which will happen if it slides out any more.  I could go in to detail about each kind of number the are tracking about his blood but that gets confusing.  The main thing to remember about that is the doctors don't seem to be alarmed about anything and they are the first ones to worry about that kind of stuff.  We let them watch it and we enjoy the baby.  I am usually the one to give a more technical report, but this time I want to point out that Carver just looks better.  He seems more alert and happy then last week.  He feels stronger when I try to get him to sit up and he is putting more weight on his legs when I balance him in a standing position.  He looks less and less like a sick kid and looks more and more like a normal kid.  God has been so good to bless us with this little man.  We are so thankful and hopeful for the time when we get to bring him home.  Speaking of that, Carver might get to move to the Ronny Mac house this week.  We will wait and pray and see.