Carver's One Year Anniversary

Yesterday Carver celebrated his happy transplant birthday.  It was especially happy for us for a few reasons.  First of all, Carver is a very healthy boy.  Outside of the Type 1 diabetes, he is much better off one year out than Granton was at that time.  Both boys are very healthy and active.  Another reason yo celebrate is last week Carver spent the night in KC and had a little surgery to remove his port.  He made it through just fine.  It in nice to pick him up now and not feel it under his skin.  He is a happy boy who is quite a chunk.  Kaylynn was always so little and Granton was ill when he was Carver's age so it is nice to have a filled out guy.  He is very happy and starting to make sounds that he thinks are words.  Anyway, we know what he means.  It mostly involves food.  Thanks for praying for the little pork chop and his brother also.  We are still praying healing of Granton's B cells and Carver's diabetes, but we are spending more time thanking God for the miracles he have us and enjoying them.

I am happy to report that I have nothing to report.  All the kids are doing just as well as they were in the last post I made.  I know many people still check in on us from time to time through this blog so I will just give a little update.  Granton just turned five.  He loved all his presents.  So did I.  He is old enough that he is finally starting to get cool stuff like GI Joes and Transformers.  We are playing together more than ever.  Kaylynn loves to dress up.  She wears one of her two Snow White dresses six days out of every seven.  Little Carver is not little.  In fact, he has earned the name Thunderbutt.  He is by far thicker than the other kids and eats anything, ANYTHING, he can get his hands on.  We really have to watch him very closely and make sure the others don't leave any food laying around.  He will eat it and spike his blood sugar the second he gets a chance.  He has been walking for at least a month now which mean he can get into a lot more trouble.  It is funny to watch him lumber around.  As for Jenni and I, we have have learned take one day at a time.  We are learning that the closer we walk with God, the easier the journey is.  Our life is not the easiest but it is by far not the hardest ether.  We know we are blessed.  After a few talks with doctors this summer, I don't think we will ever understand how blessed we are to have Granton with us as healthy as he is.  Oh yea, he and a bunch of kids his age raced the other day.  Granton won; he won big!  The track coach in me has already noticed this kid is fast and he hates to get beat at anything!

  Thank You God so much for your grace and countless blessings.

New Responsibility

Well, we have a new responsibility with Carver.  It looks like he has type 1 diabetes.  Jenni and I are dealing with this as best as we can.  We have learned how to count carbs like pros.  We have to be very careful because he is so little that he is VERY sensitive and his numbers swing around a lot.  He is happy and does not mind the constant poking.  This has been very hard for us to swallow.  Carver had been the one with the home run transplant.  Now it looks like the transplant or at least his donor was the cause for this condition.  I am still praying for Carver to be healed of this.  God has seen us through so much and I know he will carry us through this also.  On an up note his IGG numbers are doing very well and the little man stands on his own when he does not know we are watching and he is about to walk.  Thank you for continued prayers. 

Say a Prayer for Carver

Granton and Kaylynn are busy playing on 6 Henson in their favorite hospital. Carver, unfortunately, is waiting in a room for a couple days to determine whether or not he has diabetes. His glucose level was checked three times so far, and the doctors here are treating him as a diabetic patient and giving him insulin. The last glucose test was as high as 455 from 466. Actually, Granton came in for a routine check-up and a yearly endocrine appointment. He is growing very well at an average of 3 inches a year. He's fine. I am thanking the Lord that we checked Carver's labs today as we weren't expecting anything to be alarming. We were admitted right away which is also nice. I am going to find out his igg level soon. Hopefully, he won't require ivig at this time.

Jenni

Rash is gone

I just noticed I have not given an update on Carver's rash.  It is gone!  This is great because that can be a sign of Graft vs. Host disease of which he has now signs of.  They are all doing well and be are working hard to make sure they don't get sun burns.  God Bless,

Daniel

Humming along

Well, we have been just humming along this summer.  Spent some time with family in Iowa and Kansas last week after a few days of checkups at Children's mercy.  We got good reports on the boys.  They had no big worries with Carver and we learned a little more about Granton.  First, his eye is getting better, patch only four hours a day now, but we were never really concerned about that.  We have been more focused on his B cells that are not doing there job.  We spoke with a new doctor and he explained it like this:  If the common cold came around and Granton and Kaylynn both got it, they would both get over it.  However, The B cells kind of work like memory cells so if the same strand of cold came around two weeks later Kaylynn would not be affected by it (her B cells work fine) and Granton would get it all over again.  The good news is Granton's IVIG infusions make his immune system normal.  Right now, we are planning on sticking to the IVIG treatments and we hope there will be some new technology down the road that will make his B cells work on there own.  We will just keep praying and trusting in the Lord for both boys.  Actually, Carver just had a rash pop up and we are praying and trusting in the Lord about that right now because we are always aware of graft vs. host disease.  We will keep everyone posted.  Thank you for continuing to pray for the boys. 

My Bathing Beauty in Branson. A week of swimming and sun tanning was vacation indeed! The weather was a perfect treat for the springtime. 

We celebrated Granton's transplant day on Sunday June 10 at McDonald's. He and Kaylynn made a serious mess with their dip cones. It gets worse!

Carver is enjoying life at home. His labs look good and his immune globulin level has been in the normal range for his size. So, he hasn't had to receive any ivig immune booster. He is starting to eat solids now and moving everywhere. Officially rough and tumble, Carver decided to roll himself down a flight of stairs. We are thankful he did not end up in the ER like his big brother. And, Mom is still sane. What can I say God is truly merciful and kind.

HAPPY FATHER'S DAY!!!

Thankfully little to report.

It is really great to not have much to report.  Carver had his blood drawn here in Bolivar to see if he would need IVIG tomorrow in KC and he won't.  So Jenni will just take him up for a regular check-up.  Other than that, not much is happening.  Carver looks great.  He did catch a little cold but seems to be coming out of it.  We still have the same questions about decisions down the road for Granton but he is a very happy and very healthy boy.  All three of them are running circles around Jenni and I which is just fine.  We are a happy family.  We have to get some pictures on this blog to show these kids off.  Thanks for all the prayers.

Well we have been home for a month and have established routine now. I am so grateful to have my family back together. Carver went to church for the first time today at lone cherry. He was a happy boy. Our appointments and trips are starting to space further out which is also nice. I Will publish pictures soon. I have a new camera now and I'm excited to use it. Jenni

First Family Outing

The other day someone who we don't know very well asked me if Carver was home yet.  She reads the blog a lot and did not know.  Well, I thought Jenni had made a post and she thought I had made a post.  I am sorry we have not kept this blog updated.  So here is the update.  Carver did get the port with no trouble.  It seems to do just what it was intended to do.  Carver is home and has been for a few weeks.  He loves his new home and being with the family.  He is starting to crawl but it is more of an army crawl on his belly right now.  Yesterday we went out to eat as a family with the baby for the first time.  Grandma Ball is here and wanted to take us out.  We found a restaurant in town that has outdoor seating so we could bring Carver.  He loved it.  We all did.  It was a beautiful day and the weather felt amazing but not as good as we felt to be together for our first family outing.  Thank you for your continued prayers and please don't stop.

Close to Home

I had an appointment today with a surgeon who says he can remove Carver's Hickman Line and replace it with a port at the same time. This makes me less scared about having a surgery again. Carver will have a wire threaded through the existing Hickman line. Then, the Hickman line will be removed and the vein will be held open by the wire. The catheter attached to the port will slide over the wire. In this way, there should be less bleeding because the surgeon will not have to cut open another vein. He will probably cut and sew a spot in his skin where the port sits. Since the port is just under the skin it is less of an infection risk than the Hickman line with an open cite. I feel better knowing that this surgery should be less invasive than the one before...we're using the same incision and vein that goes to his heart. Also, the port stick will hurt less even though it is still a stick. We can use numbing cream like we do for Granton. And, our appointments should run more smoothly with less stress on Carver or me with the quick access. Plus, ultimately, the quick access provides a safety net if Carver gets sick and has to go to the ER. And, the surgeon will consider Carver's clotting factors before surgery. And, we can take it out as soon as we don't need it anymore. Not long-term. I think that's all.

The surgery to remove Hickman Line, Replace with Port, and Circumcision will be on Monday all while Carver is under anesthesia. We are probably going home sometime next week!

Jenni

Fun and Frazzled Moments

We have had one big adrenaline rush for the past three days here together! I can only imagine life at home with these little rug rats. Yesterday or today I stopped giving a bath long enough to go to the bathroom while nursing! I thought wiping a two year old and nursing was bad enough. No, motherhood keeps marching on. I've even been caffeine free for several weeks. Maybe I need to work on sugar now. Anyway, we have been outside to play at least two of the three days that seem like five. My adventurous babies have been burning lots of calories running, jumping, swinging and climbing. Oh yeah, dancing and yelling too. Speaking of  yelling, I was cleaning up lunch downstairs in the kitchen today when I hear this voice echo from down the hall and around the corner for the whole house to hear, "NEED SOME WIPES!" My kids are truly nuts! Carver was somewhere in a wagon under his tent and Kaylynn was hopefully in one of the play areas when I went to rescue Granton. But, my sweet baby boy told me a bedtime story tonight. Here it is...

Once upon a time there were three baby calves. One was Granton. One was Kaylynn and the other was Carver. The farmer loved to come and pet his baby calves. One day the farmer was eating his lunch. The baby calves got lost. The baby calf Granton said, "lets go this way." Then, the baby calf Carver said, "no, lets go this way." Then, the other calf Kaylynn said, "Well, OK." They looked and looked until they found a house and Kaylynn said, "no that's not the farm." Then, they saw red and they saw white and they said, "there it is, that's the farm!" The End.

He also told one about four turtles and a pond quite similar to the one I told last night. ; ) But, the baby calf story was all his own. : )

It was great to see them again.

Jenni

Happy Leap Day and Update

My little spitfire decided to just roll over without me last night! I totally missed the show. But, I got to see his determined little self this morning, anyway.

We have been able to space our appointments out to once a week which is a step toward home. We hope to keep this trend up. Also, we are praying about whether or not to place a port inside Carver's chest for easy blood access. The Hickman line he has now is more of an infection risk because it hangs outside his body. Plus, he likes to tug on the lines a lot and the thought of him pulling it out horrifies me. I handled the bloody surgery just about as well as our last dog Capone in a thunderstorm! Needless to say, Carver will have labs drawn at least once a month if not every other week for awhile. So, it would be nice if he wasn't the walking pin cushion his big brother is (I'm so proud of Granton). We just don't want the port in his body longer than necessary.

Counting down the days is at a standstill right now. Sometimes its just easier that way. But, I got more answers from our last appointment that gives me hope we are headed in the right direction. His last ivig will be March 29. His Hickman line will come out around that time because we are stopping the fungal medication infusion. And, we will be weaning the immune suppressant which is all but weaned now...a whopping .05ml.
Encouragement and prayers are still welcome! Love you all.

Jenni

From Eye Patching to Eye Catching...Can't Help But Notice Art

On a lighter note, I had the privilege of meeting a Hallmark artist the other day! He built all the fancy designs in our artsy Ronnie Mac House, as well as, the huge mirrored birds you probably noticed hanging from the ceiling at Children's Mercy. I compared his latest project "Doors of Hope" to a Crossfit athlete trained to be ready for any challenge, because he simply uses every material under the sun including cool stuff I've never even heard of. The installation will be made up of 80 unique doors displayed in downtown Chicago at their upcoming Ronald McDonald House location. You can see his fun work when you visit the Chris Duh Creative Woop website. Since meeting him I can't help but notice more people that stop to admire his donor wall. I had to scold my son for trying to climb it the other day! Always nice to be surrounded by creativity in times like these. :o)

Jenni

Eye Report and Update

Granton had a good report at the eye doctor today. He has been such a big boy to wear the patch and it has paid off! He even has a routine for taking it off himself at night I discovered. Both eyes have equal vision now. Instead of wearing a patch all day he only will wear one half a day. He will put it on in the morning and take it off at lunch for up to three months. Granton will probably have to be a pirate for at least a couple more years, but the patching will become less and less--down to once a week even. Hopefully, during kindergarten we can patch on the weekends. We'll see.

It was great to see them for even a brief evening and morning. They miss me so much. They are tired and on the mend, but still not able to be around the baby. Grammy is taking care of them for me. I cradled Kaylynn in my arms today while we loaded up in the parking lot. It was all I could do to sing "You are my Sunshine" without crying. But, I thought she needed to hear it. Granton got in his fair share of hair and snuggles too. We are hoping to be together again at the end of March, but I've been learning not to hold my breath these days. Carver will still need immune suppressant 20 days after the 100 day mark we were anticipating. The doctor is concerned about his central line being an infection risk, as well. This means we should ideally be in a location where he can get ivig quickly. But, they have not concluded their plans yet.

Good news. Daniel's fever of 104 finally broke, and no doubt he will bend over backwards to get a flu shot next year!

Jenni

Carver is doing great and is happily scooting around on his back. He also has a cute high step walk where I help him climb my lap and belly. The crawling stage will definitely be short lived with him.

The last time his big brother was here, Carver let out a huge belch. Granton said (in Jungle Book fashion), "That's a pretty big burp little britches!" I thought it was cute.

We had an interesting visitor to the RMH yesterday. A beagle dog came by to see if our suite had any bed bugs. She was trained to find them and place her paw on any contaminated areas. She is invited to avoid chemicals that the patient residents can't be around. Thought that was neat.

Gotta Go. Little Guy waking up.

Jenni

Counting Chocolates, Oh, I Mean Blessings!

My Sweetie bought me a box of chocolates from Chip's Chocolate Factory at Crown Center for Valentine's Day! They were hiding in the freezer behind Carver's liquid gold. Move over Russell Stovers!! Plus, my baby girl called me yesterday, and I got to hear her adorably sweet voice say "Happy Valentine's Day, Mommy!" She and Granton mailed homemade cards to the RMH that are now hanging on the bathroom door. Thanks Guys.:o)

With Love,
Jenni

Granton is feeling his normal, energetic, climbing self again. And, so is the rest of the Bayless family who ALL got sick after him...including his uncle Derek who had to wrestle sick and helped lead his team to win conference. While he is beating all his opponents his big brother Daniel keeps beating me in table tennis. In fact, he still managed to beat me when I came back to tie a game from a 17-6 lead. Our closest game yet has been 25-23, but I just happened to win two games today so I'm happy. We're a pretty good match up and getting better every time. We still talk about Granton and Kaylynn no matter what we're doing...we miss them. Sometimes, we reinact their funny quirks.

Carver is doing great and has not gotten the flu which is a huge praise! The House served heart-shaped pizzas today that I have seen on commercials. They were yummy. Hope you have a Happy Valentine's Day!

We have enjoyed an uneventful stretch for a while. Praise the Lord. Carver is doing very well. All his numbers are doing what they should and many of them are now in normal zones. Granton's blood work was messed up some how so we had to do it again. They took a lot of blood and they had to take a special way where unfortunately a lot was lost on the ground. He did great and did not shed a tear. However, he did breath kind of hard and clench his teeth. I think all the blood loss knocked his defense down because he got a bad case of the pukes last night and this morning. Mom and dad came and got the little man and his sister and took them home. The poor guy still had the dry heaves in the car. However, by the afternoon mom said he held down some water, then juice, then crackers. She even got him to hold down crackers with peanut butter. He ate that and went to sleep. When he got up she said he looked better and walked around a some. He says he feels fine, but he has never really complained about being sick. Anyway, it sounds like he is getting better. Please remember to pray for the little man, and his brother, all of us for that matter. We hope to all be home together in just seven more weeks.

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.