Christmas in Kansas

While we were in Kansas, Daniel fulfilled his daily workout plan by building this snow tunnel for Granton. He and I both had fun crawling through, only I had to army crawl. Also, Daniel and Derek made a small cave in the ditch. We were impressed with how warm and quiet it was. Granton and I tried to make a "Stowman" but the sNow was not packing all that well. We put mini clumps of snow together and he still enjoyed that. Kaylynn got all bundled up and decided to take a nap before we even made it out the door. She is having a blast with her cousins, just like her brother. Hope everyone had a very Merry Christmas and Happy New Year to you!

Jenni

I posted several new pictures. Click on old posts to see them all.

Jenni

I had to add this picture; we have one of me in the dryer when I was his age and we both have the same expression. I have have seen that picture of me for the past 30 years. That is probably why I see so much of me in the little man when I look at this one. Thanks again for all your prayers and happy Thanksgiving. By this way this is our one year anniversary for having Granton out of the hospital and home with us. God has given us so much to be thankful for!

Our Two Babies

Potty Training

On Monday, Granton went peepee in the potty and received a sticker for his Elmo potty chart. Today, Wednesday, Granton went poopy on the potty and received two stickers for his Elmo potty chart. We are working toward filling it up and earning some big boy underwear. We have a stack of books now by the potty. Actually, the kiddos have brought about new homes for lots of items that I would have been more particular about in the past. Like, lets say all or anything decorative. But, I will admit I have enjoyed a more clutter-free life with less junk.

Kaylynn, now has her first two teeth. She climbed the stairs the other day and sent her mom sprinting to catch her wobbly body before it tumbled down from the fourth wooden step. She had slippery socks on, too. She loves her Grammie's cats. She was chasing one the other night and just laughing and laughing. I love how happy she is! She and Granton have become good buddies...when he's not bossing her to share or telling her "no. no. Kaynee."

That's all the excitment for now. Kaylynn says hello with a snort and a grin at my feet. I think Daniel has officially nick named her "snorts."

jenni

Just checking in

I know we haven’t checked in for quite a long time. Well, in this case no news is good news. Not much has happened with the G man. He has been doing very well. He spends most of his day playing and showing off for his little sister. She thinks he is about the coolest kid around which is true because he is the only kid around. They do really well together. Kaylynn fist tooth popped out yesterday and this is just one more sign of her growing up. She crawls all over the place mostly following her big brother. They are both well and have stayed healthy through this flu season. We are very excited about this. We have had to shelter them some. Granton is not aloud in public building during the winter. Since he can’t be in them we keep her out also. This makes things like grocery shopping pretty hard for Jenni but we manage. I am one of these people who never seems to get sick. This has not been the case this year. I have already been very sick twice; although, one time I may have been food poisoned. Anyway, the kids and Jenni did not get it. It was no fun, basically locking myself in one wing of the house and being shut of from the rest of the family. However, it was worth it since they stayed healthy. Granton is really talking a lot now. He is putting small sentences together and it is pretty cute what he says. Yesterday, he went on a walk with Jenni. He ran up a hill and when Jenni got to the top he smiled and yelled “Good job Mom!” He has also started telling knock knick jokes. This is getting pretty old because they usually go like this:
Granton- Knock knock
Me or Jenni – Who’s there?
Granton- Knock knock
Me or Jenni – Who’s there?
Granton- Knock knock
Me or Jenni – Who’s there?
Granton- Knock knock
Me or Jenni – Who’s there?
And so own and so own… Anyway, I hope he dose not end up with Pa Pa’s joke telling skills (sorry Dad, but it is true)

I really don’t have any new medical news. Please keep praying for the little guy. I will try to get some pictures on here some time. Thank you for still checking the sight even if it is not updated very often like it used to be.

B cells...

Well we finally got a report on Granton’s B cells today. The news was not exactly what we were looking for. He only had 16% donor B cells. We were really looking for more. From what I can understand, his B cells only work a little bit. This means we will still have to give him IVIG. We will keep praying for this part of his immune system to work better. He does have a much better immune system than before but it is still compromised. We will be careful with him especially in the winter time with H1N1 and everything else drifting around. On a brighter note, Jenni tried to explain some other numbers that were new to me were not great were not bad either. I know that does not help much, but I could not process the new information over the phone with everything going on. They did notice how good he looked and he was very excited to get a birthday cake and balloon from all his friends at the hospital. Jenni did scare me after she was sharing all the med. stuff on Granton. She said, “Daniel, I have some more bad news.” To which my hart sank, then she told me that she accidentally erased all the pictures on our camera. It is amazing how a medical checkup with Granton can put things in perspective. At that point, I couldn’t care less about some pictures. What I am focusing on now is a little boy who feels and looks great and has parents who love him very much. We will keep doing all we can to keep him safe and trust in the Lord for his well being.

She is better

Just wanted to drop a quick note, I know many of you have been praying Kaylynn and that Granton not to get what she had. She is better and he did not catch what ever she had. Thank you and God Bless.

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.

Fun at the Pool

Well, as you all know we did not have a summer last year because we lived in the PICU. In fact, Granton had never been in water deeper than 5 inches until today. He did pretty well and we are all trying to make up for lost time. It was a lot of fun.

B-cells?

Some people have been asking me about Granton's B cells. Trust me, I want to know also. I thought we were going to have some test done at his last check-up. However, one of his numbers was a little low. I forgot what this one is called but when it drops under 400 he needs IVIG. It was at 453 I think. It will be awhile before Granton goes back to the hospital so they gave him IVIG to be on the safe side and they are planning on doing the tests next month. We will keep you posted and keep praying for the right B-cells to come back.

Happy Birthday Granton! Kinda :-)

One year ago today we took a big leap of faith. We went for the last chance one in a million Hail Mary touchdown pass. It wasn’t expected to work and even if it did we were prepared to have a little frail boy on a ventilator for the rest of his life. However, after much crying out to God in prayer we felt, as bad as it was, it was Granton’s best chance. Actually, this was the first time since March when our boy was admitted into the hospital that I felt a peace. I knew it was what God was telling us to do so we did it. Granton was the first ever child to receive a transplant of this kind in the PICU at Children’s Mercy. The transplant team and the PICU team even had to have meetings just to figure out how to work together because they never had before. They had never attempted anything like this on a kid as frail as Granton. We knew his lungs were already wasted and we were told the treatment involved in the transplant would make them even worse. It would most likely kill him. But again, we also knew eventually we had to try something. We had a peace from above about this decision. I will never forget all the doctors and nurses bowing their heads as Jenni and I prayed for the new blood as we watched it enter his body. We asked that it would be his life blood. Jenni noted that Granton was admitted into the hospital on Easter, the day celebrating how Jesus paid for our sins and saved us with his blood. Now we were praying for our little boy’s life to be spared through this new “life blood.” That was a year ago today and we have a happy little man who is not enslaved by a ventilator. He doesn’t even require extra oxygen; instead our son breaths just like a normal boy. He runs all over our house and smiles all the time. He is constantly getting into trouble, turning everything upside down like a little tornado. He is a whirlwind of blessings and we love him so much. We are so thankful for all the blessings our Lord and Savior has poured out on us pressed down shaken together and running over. We are so thankful for the doctors and nurses who God used as tools to save our little boy. We are so thankful for the countless people who constantly prayed for Granton and still pray all the time for our little boy and our family. Thank You. You are all a part of Granton’s “Birthday” calibration.

Well, I finnaly got around to posting some pictures without technical difficulties. I know that most of the people who read this blog only know about Granton, but I did not want his sister to feel left out so we are showing her off too. Granton has an appointment on Thursday. Please pray for good news from that. Also, thanks for the prayers and advice about the puking. We have cut out about the rich food and milk products. Actually, we did cheat once and give him a little ice cream with his strawberries as you can see in the picture on the right. Anyway, we have not had any throwing up episodes lately and we are praying it stays that way. I don't have much else to report. Take care and God bless

Happy Man

Well we had to go back to the drawing board with Granton's throwing up problem. We don't know what is going on. But he had another puking session the other night. The good news is he felt great yesterday. We made sure he ate healthy food and he ate like a horse. The guy has been in a real good mood lately. He helped me clean out my truck and work on our drive way. He likes to "work" with his dad and I love that. Please keep praying for the little guy. Thanks.

Some of you know we have sporadically had trouble with Granton throwing up all night. We have not put it on the blog too much because he always seems fine in the morning and it seems like such a little thing after all the stuff many of you are used to reading about with the little man. Also, I am more focused on praying for the correct B cells to come back then a little throw-up. Even though when he does this, it is a lot of throw-up. In addition to that, my last blog was about not sweating the small stuff. I must admit I joked with Jenni about being put to the test on that post. In the evening of the very day I posted that blog, I was taking a shower, completely covered in soap suds, and the water shut off. On top of that, we had family in who I hardly ever get to see and not being able to flush the toilets was kind of a downer. Things got worse at about 1:00 a.m. when Granton started his puke fest that lasted until morning. That little story kind of got me off track. In short we got the water flowing again and we are still working on not sweating the small stuff. But back to the throwing up, last week my grandma noticed the little beggar was continually chowing down on some cookies Jenni made. We ruled out the cookies a wile back because he has eaten them before and not thrown up. In fact Jenni has a list of everything he would eat the day before his all night throwing up events. We could not find a pattern. Nothing added up. However, grandmas have been around the block on this parenting thing so I paid close attention. Grandma was not talking as much about WHAT he ate but HOW MUCH he ate. I have watched Granton eat more then me and be fine, but it is always healthy food. We don’t let him have very much junk food. Also, I assumed if his stomach was too full he would throw up once and be fine. When Granton does this he keeps on throwing up and has the dry heaves real bad by the morning before he finishes. However, I did take note of what Grandma said. Well, yesterday our Track and Field team had a BBQ to celebrate this season. Granton loves the track kids and they love him. Some of the track kids fed him and I watched the little begger go around sweet talk kids out of cookies and chips. One girl made him eat grapes. I am proud of her and she will be one of the first I call for a baby sitter. On the way home I thought about all the Oreos and Doritos this kid consumed. If he puked that night, we would know why. Well, I think we have figured out the puking problem. It was not fun sitting up all night with a kid who throws up all over everything but at least now we know why. Granton can eat a lot of food and be fine. Granton can eat junk food and be fine. But, Granton can not eat a lot of junk food and be fine. Hopefully, now we can keep him from throwing up at night. I think we over fed him through his G tube back when he was staying in KC because, he would puke all the time and had real bad diarrhea. Oh yea, I forgot to mention Granton always had bad diarrhea when he pukes all night. Anyway, I think his body simply learned to say ENOUGH! When it feels overloaded it gets everything out, literally. Now we will just try to keep him from overloading his system. That is about all for now. We are still are praying for the correct B cells to come back and we appreciate you joining us in this prayer. Thank you so much for the love you have shown Granton and our family.

What a difference a year makes

Well our lives must be getting normal because we have been in such a whirlwind I haven’t had time to blog. I a not complaining; I like to be busy. I always say the alternative is boredom. Our experience last year has taught me to enjoy the little thing in life and not to sweat the small stuff. Here is an example, On Monday Granton had an appointment in KC and a friend watched Kaylynn for us. I left practice a little early to get her. As soon as I got home Jenni’s sister came out to tell me Granton was having trouble with his IV and they would get back latter. She knew I wanted to cut the grass which was at least a foot high so she offered to take a baby to her friends house to watch her as they studied. Great I finally get to work on the yard. Five minutes on the lawn mower and I had a broken belt. I knew I was short on time because I need to go get Kaylynn about two hours after her aunt took her. I raced back to town and barely got the new belt before they closed. Actually, they were closed and let me in anyway. I raced back home to work on the mower. Of course there were a bunch of safety guards on the mower deck so I took a long time to put the new belt on. I got it going and went back to mowing. The new belt broke after ten minutes and I noticed a bearing was now out on the mower. No problem I have another mower that just doesn’t cut the grass as nice and as fast but I works. Well it only works when it has gas and I put all my gas in the first mower. By now it is obvious I won’t get the grass cut so I drive back into town to get Kaylynn only to find out she is not there because Jenni’s sister had brought her back to me and we missed each other on the road. This kind of thing used to tick me off but I didn’t seem to mind because I kept thinking this is nothing compared what we were dealing with this time last year. Jenni didn’t get back with Granton until about 10:00. I was starting to get a little worried and said a prayer for them on the road and I actually herd the garage door open five seconds after I finished. However, the day ended on a good note. Granton was taken off one of his meds and will probably be taken off another one next time. This will only leave his hydrocortisone and he is being weaned from it. So we can actually look forward to a time when he doesn’t need any meds. He is so much fun and has turned into a ham. He loves to joke around. We enjoy playing every night. We have come so far. I actually cried the other day in front of the track team. The girls won their first ever district championship. As we presented the plaque, we told the kids how proud we are of what they have done, where they came from, and what they have been through. As I was standing in front of them I remembered Granton seemed to be slipping away this time last year and I could not even be at the district meet. What a change our lives have taken. I was so overcome with emotion I actually cried. God has showed me my life is a blessing. He is so good. By the way I did get the yard mowed.

Fun On The Farm

This Mother's Day has been very special for our family. We got to spend time at Mimi and Papa's farm with Granton and Kaylynn. Daniel and I have not been to the farm together since Granton was taken to the hospital over a year ago in March. And, amazingly, this weekend all 12 family members were together again including the 5 grandchildren for a total of 17 today at the dinner table. The babies gathered near in their bouncer seats on the floor. So, of course, we got our family picture worked in, as well.

Granton got to ride Mingo the Paint horse with his cousin Addison yesterday. Then, I wheeled him around in a wagon for the first time, and Uncle Dave took him for a ride on the four wheeler. He has definitely enjoyed the farm! When we showed him the baby puppies he treated them about like he would Kaylynn. He gave them a three second pat and then pushed them away. Besides seeing all the animals I think he has enjoyed all the people and his buddy Addison even more. They really liked the slide and swings out back and they played with the blocks inside that Uncle Dustin made. Granton also cooked in the play kitchen this morning.

As for Kaylynn, she tried her hand at making my first Mother's Day card. Daniel had her handprint made inside with Granton's scribbles. He said they both used different art forms...watercolor and pastels. :)

Here's wishing all the Mom's and Grandma's reading a Happy Mother's Day! We love you.

Jenni and the Gang

I know a lot of you must be wondering about Granton’s B cells. Well the new news is that we don’t have any news. We got a call that the last test they did on Granton’s blood did not work for some reason. No big deal, we are just going to do it again. In fact Granton got blood work done today. He has already finished. He is having fun today. Jenni has all of them outside on a blanket. She and Granton are soaking up some sun. Granton is also chowing down on pizza. I guess two big jet bombers just flew over. They were probably from Whiteman AFB they fly down here sometimes. Anyway, they were flying pretty low and he and his mom thought they were amazing. Actually, his mom thought they were a little scary. Well, I haven’t posted anything in awhile. I have been so busy with the new baby and the Track and Field (the ladies are conference champs this year) team on top of my normal teaching job I let this get behind. I just want everyone who reads this to know we are doing well and, as always, we appreciate your prayers.

Granton had his check up yesterday. It all seemed like good news. His blood count was 11.1, holding steady. Other than a nasty diaper rash, nothing seems to be bothering him. As you know, we are praying for the return of the donor’s B cells and not his. They did a test to see if any B cells (the donor’s or his) are coming back. We don’t have the results of that yet. Of course, this means nothing to Granton. He has been more concerned about playing with cousins who came to see him. They came to see his little sister too, but; Granton doesn’t acknowledge this fact. It is nice to see him finally get to be around kids his own age. This is the first time in over a year he has had any real exposure to his peers because it was simply too dangerous before. It is great to give him more freedoms and he loved it. Outside of trying to knock his cousin upside the head with his guitar after a disagreement they got along great. His little sister is getting along great also. She had her first checkup today and has already gained a pound. Thank you so much for praying for us.

Finally, some pictures

I know it took awhile but I finally have some new pictures on here. I'm sorry I can't seem to turn that one the right way so I guess you will just have to look at is sideways. They are all going great. Granton has an appointment next week. Please pray for the right B cells. I will give more updates later.