Big brother's little army men

Here is the latest news on the Bayless Bunch. Kaylynn is sick. She had a fever of 101.5 last night. She has a real bad cough and Jenni is going to take her to the doctor today. We are so thankful that Granton does not seem to be sick. Jenni really has her hands full with a sick baby and a little boy with a compromised immune system. She is doing her best to keep the two separated but that means She is with Kaylynn all the time and Granton has to stay in the other room. Jenni can’t hug and kiss the little man because she has Sister Sue’s germs all over her. Granton feels neglected and he is not very happy about it. I want to help more but I have a lot of responsibilities at school right now. So please keep us in your prayers. Also, there is a big “Thank You Lord” in that Granton did not get what ever his sister did. He must have some little army men fight off the germs and that is a welcome change.

A Mouth Full

We have good news from Granton's last appointment. He no longer has to have his meds! They stopped his acylovir--the last medication he was on (for viruses). Also, Granton has made some b-cells. We will find out officially in two weeks if they are functioning, but so far we suspect they are because he has not been sick and his lab tests have been good. The lab will soon test to see whether or not the b-cells are donor or his own, as well. We continue to pray that the donor cells come back. The doctors seem positive that they will come back, eventually, with time. So, Granton should not have to expect to receive ivig for the rest of his life! Another positive thing is that he finished his last dose of pentamadine for pcp (pneumonia) this past week which means one less hour of being hooked up to iv meds. Speaking of which, we have the option to give him a shot once a week in the stomach just under the skin, so we are considering this, especially during winter weather...we would not have to drive to KC or contain him for three hours with an iv. And, actually, before considering the option they will try to wean him from ig (immune globulin) support first. As of last week he did not have to have the ivig, but we will check his levels next week to make sure he is staying above where he needs to be. If needed, we might be able to get ivig at home.

After such a great report, Granton decided to be "all boy" again and give us a slight scare. He had been anticipating his arrival to the farm for weeks. (By the way I'm typing this as he shuts his finger in a door somewhere in the house). Not five minutes after we parked the car his face found a bucket and started pouring out blood. We couldn't see inside his mouth for a while, and when we looked there didn't seem to be a tooth where it should have been. We searched for the missing tooth and couldn't find it anywhere. Then, as the bleeding slowed down we discovered his tooth was, in fact, still there but jammed straight up into his gums. His cosmetic injury did not slow him down a bit. As soon as I had him calmed down he was up and running around trying to bite toys. His swollen lip was the worst part and the most painful (it reminded me of a "who" from Dr. Suess). Anyway, we will probably have his mouth checked out--just in case--for infection. But, despite his hillbilly grin, Granton's look hasn't changed much and certainly doesn't compare to his head looking like a blown up balloon when his lungs were leaking air all over his body. We are still reminded to be thankful from day to day raising this little dude.

Have a fine Labor Day,

Jenni

It has been too long since we had some pictures on here. The one on the tractor was taken this week. The one with the ropes was when he was "working out" with me at the farm. The rest of Granton were at Aunt Shanna and Uncle Neal's wedding. As you can see he loved hammering the ivories and then taking his shirt off and dancing with the older women. We had to put one of Sister Buttercup in there also. Thanks for the prayers.

New report

Well, once again I am short on time, but I need to tell you about the B-cells. They were not able to test for them and Granton’s number was low enough that he needed IVIG. However, the doctor told me that Granton is still well within the normal parameters of recovery. I had been under the impression that they were more concerned about the B cell count. She told me that the B cells are tied to the T cells. Granton’s T cell count is great and it is 97% donor cells. She did not seemed concerned about the B cells catching up. T and B cells are main parts of an immune system. Right now Granton does have an immune system but it is compromised. She said it is like fight with only one arm. It can be done but not as well as if you had two. However as I understand it T cells are a little more important. So since Granton’s immune system has them he at least gets to fight sickness with his dominate hand. As always, Granton does not care. He is very happy and has started enjoying making his sister laugh. I will try to post pictures later. Thank you for your continued prayers.

Making up for lost time

Man, it has been way too long since I wrote a blog. We don’t have internet at home so we typically use three computers. One is at my classroom at school and the school has been closed where I can’t use my room. The second is at Jenni’s parents and it broke. The third is in Kansas on the farm and it has been off line due to remodeling. That is one reason I haven’t posted for so long. The second is much better; we have been having too much fun. As you know, we spent ALL of last summer in the hospital room with Granton, but now we are making up for lost time. It has been great. I normally work construction jobs for our school in the summer, however; this year the school could not afford to do any projects so I have not had any extra work. At first this was really bothering me because I like to work and of course we like the extra money. Now I look at it differently. We did not get summer last year so this year we are going to get to pack two summers into one. It has been great. We have spent as much time on the farm as we can. I think this is Granton’s favorite place in the world. He loves his Me Me and Pa Pa and his best friend, Cousin Addison is there also. He also likes all the animals. Since our last post, we have also spent time in Oklahoma, and Branson. I have also spent time at a few different churches charring our testimony with the SCID’s adventure. I typically talk for thirty-five minutes and I still have not been able to finish without crying. At least I am not alone because I see a lot of people wiping there eyes before I am done too. Today is also a big day for Granton because he gets to be the ring barrer in Aunt Shanna and soon to be Uncle Neil’s wedding. He practiced last night and did fine. However, he decided this is exciting an event to walk with his pillow and rings. He thinks it is much more appropriate to spring and then he would like everyone to clap and yell “yea” when he gives the rings to the right person. It should be fun to see what happens today. All right, I guess I will change the subject to Granton’s B cells. We still have no news. The Doctors are staying positive and hoping that the cells are just taking a long time to come back. They will be much more concerned after six months. Next week is month five and Granton will have a check up on Thursday. I don’t think anything could make me more happy then his number being high enough that they will be able to test t he B cell. This is something we have been praying and I know many of you have been praying as well. I am still reminding my self the words of the lady who grabbed my heart in the waiting room of the PICU over a year ago. “Don’t worry, pray.” So that is what we do and that is how we try to live our life. I know the Lord has everything under control and I very interested to see how God takes care of Granton. So just keep praying and keep checking the blog for updates. School will start soon so I plan of posting more. Thanks for being so patient and keeping us in your prayers.

Hanging our

I know I have not posted anything in a while but we have been away on the farm and at the lake. We had a great time. On the 4th last year we were taking Granton off the ventilator. I think that post is recent enough that people can actually go back and reminisce. As most of you have noticed all the old post when things were bad are not on the blog anymore but this one is new enough. This year was much more calm. Taking him off the vent is one of my best memories but this was probably more enjoyable this year with out all the "excitement." Anyway the little man goes in for a check-up on Wednesday. They might finally test those B cells so pray for to have a bunch of the right ones. Thank you so much and enjoy the pictures and video.