Keeping things in prospective

I have no idea if anyone still looks at this blog.  But I am sending out a Praise the Lord into cyberspace if nothing else.  So many people prayed for my little boy at death's door for so long.  We were told he would not make it, and even if he did would be on a ventilator for the rest of his life.  We all know our Savior had different plans.  This is a picture we took last week of Granton.  He is the one in blue and gold on the left.  He wrestled at rookie state and took 6th out of a 14 man bracket.  It was a good day, we have had many, and we pray for many more.  I just like to keep things in prospective.  I am so blessed the can breath on his own, but we have been given so much more!  This kid is wrestling and starting to win matches!  Anyway, I am very thankful and just wanted to share.

Long time in-between.

Well more and more time seems to be in-between each post.  Actually, this is a good thing.  We are very blessed with the health of our kids.  I would describe our children and "normal" kids today.  Although, the boys do require a little extra attention and Kaylynn has not yet been tested to see if she is a carrier of SKIDs.  I pray she is not even though I know God will see her through motherhood if she is.


In my last post, I was excited and overwhelmed to report the Doctors told us Granton's B cells were working.  Well, it seems as if that was an error.  We did take him off his IVIG and over time his numbers became low enough that the Doctors decided to put him back on it.  I gave him an infusion last night.  He gets one a week and it is no big deal.  I am thankful Granton did not get sick while he was off IVIG.  In fact, Granton does not get sick much at all.  He has dealt with an ear infection a little but nothing big.  Actually, he earned a trophy at the end of the school year for attendance.  Granton did not miss one day of his 1st grade year due to being sick.  That is actually a bid deal for a little guy who's parents were told at best he would live on a ventilator the rest of his life.  I can't say enough how happy we are to have him in the health he is in.  Yesterday, I watched him practice his cartwheels and round-offs from his gymnastics class.  He also pulled the swing over to the slid and jumped of the slid while in the swing and ejected himself at the top of swing on the other end of the swing set.  By the way I made this swing set for them and it is about 15 feet tall so he was air born for quite a while.  A little scary for the parent but pretty cool at the same time!  Also, along the lines of athletics, Granton wrestled last winter.  Actually, he mainly goofed around in practice which drove his wrestling coach father crazy.  But he did get third place at the only tournament he went to.  Problem was there were only two other wrestlers.  I do have to admit he has really improved since then and I think he will win some matches next year if he decides to do it again.  He is just a normal boy.  He, and his buddy, got in trouble for shooting a window out of the tree house last week.  He drives me crazy sometimes but I am lucky because I welcome these "trials of parenting" since I can remember hoping and praying to have a boy like he is turning out to be.


Carver, AKA "Ham Bone" is also a wonderful blessing.  His immune system works just fine.  He is a type one diabetic, we think from the stress his little body went through with the transplant, however, that does not slow him down at all.  He is the most outgoing happy little boy I have ever seen.  We got him an insulin pump and it has been useful to keep his blood sugar a lot closer to where I should be. Sure, it is nerve racking sometimes but Jenni reminded me the other day that we CAN get the treatment or medicine they need.  We DO have answers for their problems and there are so many people who are still searching for what we have. 


I don't know who still reads this blog.  But I know some people do.  I hope to keep having long spans of time between each post because that means everything is okay.  If we are ever in trouble I will make a post, because I know there are some great prayer warriors who read this and I am happy to have people who have my back.  Thank you and thank the Lord for all he has done for us.

Yet another answered prayer and miracle

As you know we have been praying for great news with Granton's B cells.  WE RECEIVED IT TODAY!  We just found out they are working.  The doctors new plan of action is to take him off of the IVIG immediately and test his IGG(I think that is the right acronym) each month for the next three months.  After that, he gets one more test and then, we pray, he is cleared!  When Jenni got the call from Children's Mercy (actually they called her three times in just a few minutes which never happens and shows they were very excited) they told her "this is great news."  This is big to me because the doctors are very cautious not to give false hope.  In fact, this is very big news on so many levels.  Granton was not supposed to live through the transplant originally and we have been so thankful for his recovery, but we never thought God was done.  Many of the best Doctors in the world have told us he would have to be on IVIG for the rest of his life and there was no hope of him ever getting off it. We have even been asked if we wanted to try another transplant in the future to see if it works 100%.  We did not have a peace with going through it a second time.  I don't think the Doctors thought it was the best choice ether at the time.  Anyway, no one in the medical field thought this could happen and it did.  If you know Granton's story, my last sentence has been typed more time than I can count.  Now, as usual, there is more to the story!  Granton's responding B cells ARE HIS!!!  That's right I said HIS.  These are the cells that did not work at birth.  These are the cells that we tried to kill before the transplant because they were worthless and the donors need to take their place.  How are they working?  Don't know and to be honest I don't care.  We have learned not to trust in that stuff, we just trust in the Lord.  After we brought Granton home he got anemia and we gave him a medication called Rituximab which killed his donor's B cells.  Thankfully, his T cells still worked so he had some immune system and his body used the IVIG for the rest of its defense, but now, it seams, his body is using it's own B cells to defend itself.  I am not a doctor but everything I have been taught about SCIDs is that this is impossible.  But we know with God all things are possible.  We have prayed so many prayers that have been answered for Granton, however, they are never answered in the way I thought God would work.  The crazy thing is I have sent up thousands of short little prayers saying, "God please make Granton's B cells work."  I was thinking DONOR B cells because I knew his were worthless.  God has answered my prayer literally because these are GRANTON's B cells!  I never would have expected that!  Our God is an awesome God, not a predicable one.  On that note GET THIS!  In our Sunday school class we have been going through the book of John for at least the last year.  Sunday we made it to John 11. Eleven was my high school football number and has always been significant to me which makes this even more cool!  This passage covers the death and resurrection of Lazarus.  Our teacher made it a point that Jesus waited days before he went to Bethany.  By that time, everyone knew Lazarus was dead.  People lost hope that they would ever see him alive again.  They had had hoped that Jesus would make him better, but after his death it seemed impossible.  Our teacher said God does things for his glory in his own timing and in ways people never expect.  When he said that, I thought about Granton and it hit me hard.  We have been waiting on this test result, praying for working B cells.  However, this is not about Granton, it is about bring glory to God.  He raised a dead man in his own timing.  He healed Lazarus in his own way on his own terms.  He has also healed Granton on his own terms.  I want to give all the glory to him and keep trusting in him every day.  Please keep praying with me over Granton's next three months (or however long God decides) as he keeps getting tests to check his immune system.  We look to Jesus for answers and give all the glory to God when we get them.

Big News and God's not done!

Wow!  I have done a terrible job of managing this blog.  For those of you who still check in on Granton and our bunch.  I want to share a few things.  First of all, Granton has prayed with our Lord  and he told God that he wanted to be on his "list."  In other words He, along with his little sister, has asked Jesus in his heart!  I got to baptize them both.  I was happy to share with our church that I always knew Granton would make this decision some day.  It happened a little sooner than I thought but, of course, I am not complaining.  I shard when Granton's Meme was staying with him in the hospital, her prayer for him was a little different than most.  She prayed he would die then and there if he was not going ask for Jesus to save him later.  It made no since for him to endure all the pain in that hospital room if he would end up spending eternity in anguish.  We know Granton's survival was a miracle and I never believed God would save his body then without saving his soul later.  After that, everything seems so small.  Nevertheless, I would like to ask for prayer.  In our last post we explained that there was a "glimmer of hope" that Granton's  B cells could be working again.  We have started the process of testing this.  We are not testing like I thought we would be.  He was given the first part of his rabies vaccine yesterday.  He has to get more shots and then the doctors will observe how his system reacts to the vaccine.  I don't know exactly why it has to be rabies, but whatever, I trust them to take care of the technical stuff.  I just pray.  I appreciate your prayers also.  I would love to find the day where he is completely 100% free of any immune problems.  We are so thankful of everything God has done with Granton; I know he is not done yet.

A Glimmer of Hope

I think we are overdue to share a few pictures.  I hope you enjoy them but this post is not about the pictures.  We have a BIG prayer request.  As many of you already know Granton's B cells have not worked.  To compensate for this he has received IVIG every basically every Sunday since he came home from the hospital.  Doctors have offered the choice of going through another transplant.  There are many risks and a lot of pain, physical for Granton and emotional for everyone, involved with another transplant.  Granton does not want another transplant and we have chosen against it unless something changes.  Granton still has to have test done periodically.  On his test, the results showed higher than expected levels of immunoglobulins.  This may not mean anything but more test or, as the doctor said, "there's a glimmer of hope" that it means his B cells are starting to work!  Doctors are very quick to say this is a slim chance.  But in the past we have been told there is no chance of this.  Most anyone who reads this blog knows the unbelievable walking, and running, miracle Granton.  We know God can make another miracle happen with the B cells.  He is in total control and we are trusting in him.  Once again I am asking for prayer for my son.  Please join us with this request when you talk to our Father.  Thank you so much for all the support you have given our family.  Also, I hope you enjoy the pictures.  

Getting Older

 

Jenni got a new phone that takes pictures.  We have been trying to post pictures directly from it to the blog.  We still haven't figured out how.  However, today I figured out that she can e-mail pictures to me and then I can get them on the blog.  A lot of people have requested pictures and now I think we can do that.  As for the for the Bayless family, we are enjoying God's blessings everyday and we remember that everyday is a blessing.  Granton is doing very well at school.  Last week he was given the MVP award.  I don't know what that means but it is a big deal because he got a free crazy bread at Little Creasers and that kid loves crazy bread.  He is now six.  The picture above was taken a day after his birthday.  He had a big birthday party.  After everyone went home and he had stuffed himself with cake right before bedtime he said, "Dad! my tooth is loose?!"  I told him he was growing up and it would fall out sooner or later.  He decided sooner was better and worked on it hard that night and all the next day until he got it out.  He was very proud to get it out quickly and get money from the tooth fairy.  Life is great.  I try to thank God every day for this little man and his brother and sister.  Thank you all for praying for this guy and all of us.

Always Hope in Jesus

This post is mainly for all the people who still check up on and pray for Granton and our family but who don't really have any contact with other than this blog.  I really want to put some family pictures on this blog but, right now we don't have the right hook up to do it.  I know it is not that hard for most, but we don't have a home computer and that makes it a little tougher.  We are still doing well and pretty much living like a normal busy family with three little ones.  I am mainly reporting that Granton is attending school now.  It is really cool because many of his teachers recognized his name or actually bought a "Don't Worry, PRAY" Granton shirt that was such a popular thing to have five and a half years ago.  Do you remember those shirts?  Do you remember the story behind them.  Do you remember those months when we were posting two or three times a day with the new dilemma that doctors found that was going to be the final straw and take Granton's life? They are memories burned into my heart forever, but praise the Lord they are only MEMORIES and no longer realities. It is really a blessing.  I still remember hoping against all hope that I would get to see him go to school.  I remember, being told so many times how unlikely it would be for him to leave the PICU alive and how even if this happened, he would always have extreme limitations on his development and not live a full life.  He still does have to have a shot every week but other than that, he has NO limitations! He was reading before the first day of school started, he is one of the tallest kids in his class, and many people have remarked that he is very athletic.  Also, Granton LOVES school.  He comes to the high school weight room with me every morning before school and from there gets on a bus for the short trip to the primary building.  He is always urging me to hurry up and finish my workout because he can't wait to get on the bus.  This sounds like I am bragging, and actually I am a little, but I wanted to remind all of you that prayed and still pray for us that God has answered our prayers.  Many teachers have stated that they just can't believe that this is the same kid who had such a hopeless future.  I am here to say "BELIEVE IT BABY!"  there is always hope in our Lord and Savior JESUS CHRIST.