Update

Well we are still praying very hard about many decisions that we are facing.  We know God will open and close the doors and lead us down his path.  We think we have everything lined out for the Carver's Cord blood banking.  We are still going over with our selves and the doctors the best plan for when he arrives.  Jenni was scheduled to have amniocentesis tomorrow (Friday) but it has been called off for now at least.  We still don't know if we will do it or not.  Cord blood testing can determine H.L.A. but this is not as important as we thought earlier.  We are just praying Carver is SCICs free.  We have a place for Granton and Kaylynn to stay as long as they need to be separated from Carver.  Of course this means they will be separated from their Mama as well.  That is something we would love prayer support for because I know it is going to be very hard on Jenni.  However, if the baby does not have SCIDs be can all be together much sooner.  This is our prayer.  We have had another prayer answered and on September 5th Granton and I Fly to Seattle.  He gets his procedure and we will fly back on the next day.  He is looking forward to the plane ride but not very excited about more pokes.  Please keep praying for this little man.  If he gets good test results from this procedure, he will not have to get many pokes anymore.  Thank you all for keeping up with everything going on.  We are always looking up and thankful for all your prayers.  I will try to keep everyone posted to all the developments.

Lots of things to pray about

Jenni and I have been communicating with several doctors, counselors and coordinators concerning our new baby's testing, cord blood banking and hospitalization. We are also considering testing in Seattle for Granton as soon as possible.  We would appreciate your prayers for the complicated decisions we have to make including: amniocentesis for H.L.A. donor testing and care for Granton and Kaylynn (away from Mom) if the baby has SKIDs.  We are also praying about the delivery location of Carver if he has SCIDs.  We are especially praying for the baby to not have SCIDs and strength and wisdom to handle the details we are weighing. 

Summer Pictures

The kids had fun camping over the fourth and swimming in Branson! We have postponed our trip to Seattle until next summer for Granton's b-cell testing.  Right now we are praying about testing for new baby Carver and the details of where the delivery will take place. We are hoping to deliver in Bolivar and are communicating with doctors in Kansas City about the process.

Happy Transplant Birthday Granton

Today is Granton's transplant birthday!  I can't believe it was only three years ago we stood in his PICU room and all the Doctors and Nurses were quiet as I prayed for the new lifeblood Granton was receiving and that it would be used to save his body and make him healthy.  I have since been told that his chances were not much better than 0% at that time.  However, the little guy runs all over the place now and is walking proof of answered prayer.  As for his possible trip to Seattle, we still don't have any new news.  I think we are still waiting for some things on the Seattle end.  Of course we are still praying about this and we still have all the options I discussed in the last post.  However, for the other big news from the last post, baby # 3, we have big news.  Bayless baby # 3 is a boy!  We can't wait to see him in person.  Of course this makes SKIDs a bigger factor.  I can tell when people find out we are having another boy they have questions but most of the time are embarrassed to ask.  Don't be, we are totally fine and open to discussing this kind of thing.  Living in fear of what the future could be does not make the present any better.  It does not make the future better either for that matter. That is something God taught us with Granton and we have not forgot it.  Fear looks behind, worry looks around, but faith looks up.  We always want to look up.   Ok so here is the deal, the new baby has a 50% of having SKIDS.  I have to admit that every time I say this I remember the day one of the first SKID's survivors came to visit us in Children's Mercy.  He said he would like some kind of study done on this half chance of having it.  Because he said everyone in his family and extended family that had any chance of getting SKID's got SKID's.  Anyway, according to science, the chance is 50/50.  Keep in mind that if he has it, it would be different from Granton because then we did not know until it was about too late.  But this time we would be more prepared.  Here is how.  We will do a test at birth.  Babies get all their immune system from their mother's for the first few months if they are breast fed.  Obviously, he will be.  If the test is positive, we will look for a match and give him a transplant while he is still using Jenni's immune system through the milk.  Their is a 25% that he will match Kaylynn's cord blood which we have saved just for this kind of thing.  However, we have not had Kaylynn tested yet to see if she is a carrier.  This is something we will be talking to the Doctors about very soon.  I do not know for sure but I think her cord blood would not be useful if she is a carrier.  We will find all of this out on our next visit as it has become more important now that we just found out we are having another boy.  Of course, we ask for and appreciate all your prayers over Granton and the new baby.  The other big question about the new addition is much more fun.  What will we name him?  The first name is a done deal.  We have been saving it for a while and if Kaylynn was a boy we would have used the name on her, in fact, we probably would have used it on Granton had we thouht of it back then.  He will either be Carver Luke Bayless or Carver James Bayless.  As long as I can remember, George Washington Carver has been one of my biggest American heroes.  People, always say, oh yea, the guy who made peanut butter!  Peanut butter is not even the tip of the iceberg on what this man accomplished.  If I explained everything he did, you could still be reading this post tomorrow.  The thing that is most fascinating to me is not only his accomplishments but how he overcame so many things to do what he did.  He started as a poor, sick (actually he never was in good health) orphan slave with no education.  As a kid he taught himself to read by staring at a Bible and the rest is history.  Anyway, he was an amazing man and has always been one of my hero's.  We are still up in the air on the middle name.  I would like it to be a biblical name and we have always liked the sound of Carver Luke.  My brother Dustin's middle name is Luke and he is pulling for this name.  However, I have been reading in James lately and I commented to Jenni how much I like that book.  She said, maybe we should name the baby Carver James.  I really like this name also, it is a biblical name and one of my biggest personal hero's is the pastor I had growing up, Bro Jim.  His actual name is James Hardin.  One way or another, the kid is going to have a cool name. Wow, I wrote more than most attention span's can handle.  Thank you for still following the blog and all the prayers.  I hope you enjoyed the picture and videos.

Thank you Lord for Small decisions instead of big ones

As you can see the kids are doing very well. We are very busy in track season. In fact the sports reporter took this snapshot of kids playing in the sand pit at the end of the long jump runway after the event was over. Jenni and I were very appreciative of all the publicity Granton got. But it is nice that he made the front page of paper for just being a kid this time. We also have other big news; Bayless baby # 3 is on the way. Surprised? We were too! We love a good surprise and this one will be great. We are, of course praying for the babies health. SKID’s is a factor in our prayers and we would love for people to join us in prayer for our next little one. To the people who still read this blog – you will never know how much comfort we have received from your never ending prayers.

Ok, the update on Granton. If you have been reading and you remember, Granton’s T cells (the hardest fighting troops) are from this donor but a high percentage of his B cells are still his. We have been boosting his immune system by giving him IVIG. Last year we weaned him off of it. A few months later he got pneumonia and he and Jenni spent a little time back at Children’s Mercy. He has recovered and is great. But the question remains. Did he get sick because his B cells don’t work and we weaned him off the IVIG or did he get sick because kids just get sick? A few months ago we drew blood to make sure most of the B cells are still his. This week we got the results back. They are. So next question, do they work? We don’t know. In the past, people must be off IVIG, and risk getting sick, before a test could be given but now there is a new “experimental” test that can be given while he is on IVIG and he won’t have to risk being taken off of it to find out if his B cells can fight. This is good. However, the test is only being done in Seattle. I would have to take Granton there for a day or two visit twice this summer. Also, since it is an “experimental” test there is a very good chance insurance will not pay for it. Right now, I don’t know how I would pay for the plane tickets. We don’t even know what the test will cost, but I doubt it will be cheep. However, this is not a killer decision. We had to face too many of those three years ago. Here are our options:

1. Take him of IVIG and test the B cells a few months later

2. Give him the test in Seattle

3. Just continue to give him a “poke” or shot for a few hours every week by keeping him on IVIG

I don’t know what we will do. We will just pray about it. My mind is pretty logical and the logical choice is to combine the second and third option. We probably can’t afford the test this summer but we can save up for it and do it next year. This is all new to us. We are just in the prayer stage. We have always trusted the Lord with Granton. Actually, now that has grown to trusting the Lord with our whole family;-) I have always found peace with our decisions, event the big life and death ones, and I am sure God will give us direction here as well. I would appreciate your prayers for us on this decision just like you have prayed for us on so many others. Thank you and God bless you and your families.

All good news so far and still waiting for the big news.

Many people still keep up with Granton's progress but we normally do not have any new news.  However, he did have a check-up over spring break and we did learn a little.  First of all, they have not found anything bad.  His height, weight, heart rate and oxygen saturation level are all fine.  The main thing that we have been waiting of for the last year is his doner B cells.  We found out that he does have the right precentage of B cells but we are waiting on the test results to see if the B cells are his or the doners.  We need them to be the donors because those are the ones that do what they are suppost to.  If they are the donor's, we will start the process of weening him off his IVIG.  This has been my prayer for a while as it will be a compleatly functioning imune system.  Granton will be happy with this for another reason because he does not like geeting his weekly two hour shot.  If the B cells are Granton's, we have to go to Seattle this summer for another test.  Please pray for good news on the rusults.  What a blessing a compleate immune system would be.  Thank you so much for being faithful in praying for our boy.