New Year's Eve Party

Well we are not at a masquerade but we are wearing mask at this party.  There really has not been much change.  We feel like we are making slow hard progress.  However, the doctors say the little man is ahead of schedule.  Carver did not get the drug that helps his white blood cell count so the number went down a little but that was to be expected.  It is 1980 as of last count. The order on the blood cells goes like this: white blood cells, which he is already making, first, then come the platelets, and the red blood cells are last.  He is not making platelets yet and that is why he has to keep getting them.  Red blood cells live longer than platelets so he doesn't get them as often but we don't think he is making them right now.  Of course we are praying for Carver to start making the other cells on his own. We are also praying about a few other things.  First, Carver's back side is a mess.  His little bottom has sores that haven't gone away.  He has some pretty nasty poop due to all the drugs that need to be pushed through his body.  This make his sores worse.  Jenni and the wound care team are doing all they can but every time he is changed there is poop and blood mixed together and it really hurts the little guy.  He is also puking a lot.  The puking does not seem to bother him at all or slow his eating much, but it would make us feel better if it went away.  Those are the main things we are looking for in the new year.  I hope this post did not come off negatively.  We are very happy and encouraged on Carver's progress.  We are still looking up for comfort and we are still being blessed from above.  It has been a great year and we are looking forward to the next.  Thank you for your prayers and God bless you. 
Happy new year.

New Year for Baby Carver

Carver's bottom got better overnight with the new cream and his own cell counts rising to 2160! In fact, today they talked for the first time about discharging Carver from the hospital. We think he still has 7-10 days here before then, but he gave me a big smile today when we talked about leaving. Also, we are done with the medicine that boosts his cells or helps him to engraft. Yesterday was Carver's last dose, so hopefully he will be less sore and achy now. Overall, I feel like we are on the mend and able to relax more and console Carver less. His pain level seems to be better, too. If you get a chance check out his article at http://www.kansascitystar.com/. Happy New Year!

Jenni

Engrafting

Carver's cells are coming in rapidly and starting to do their job! His counts are at 1400 and they have to be consistently above 500 before he's considered engrafted. So far they have doubled in number each day since Christmas. Roughly, those numbers were 0, 130, 420, 720, 1400. Above 1000 is where they like to see them. We see signs that they're working because his bottom showed an inflammatory response. In other words, it looks terribly sore with open skin areas and a little bleeding. But, he's followed by wound care and they let us know what to do every time he gets a flare up. Changing his diaper is more of a treatment process...you have to be prepared and take your time. Also, his skin got splotchy red and puffy again so the doctors are holding his tacro for the time being. His tacro level was 26 and supposed to be between 7 and 10. Those are the only two concerns so far. We scheduled his pain med again until his bottom clears up. But, praise the Lord for White Blood Cells that know what they're doing!

Jenni

Merry Christmas!

I know a lot of you check this blog all the time and I will just have to thank you for your patience.  We have been busy chasing Carver's crazy brother and sister around.  We have been enjoying our time with them.  They have enjoyed our company and we are overflowing with things to do.  We may be spending lots of time with them but Carver is getting attention also.  If you know my sister, Denise, you know she is about as loyal, hard working and diligent as they come.  She is takes care of Carver when Jenni is busy with the other two.  Carver seemed to get better just about the same time Granton and Kaylynn got here.  He pulled out his NG tube a couple of times and since he was eating on his own the doctors and nurses just decided to give him his way and left it out.  He has kept up his end of the deal by eating on his own.  He still has some mucus but not near what it was.  He is doing very well.  We hope he starts showing engraftment pretty soon.  What a great Christmas present that would be.  We hope everyone is enjoying our savior's birthday as much as we are.  Thanks for the continued prayers and Merry Christmas

Up swing?

We have not posted in a while because there has not been much to post, which is a good thing.  The doctors made rounds today and the hope he is starting the up swing.  We think he might be.  Carver slept most of the day yesterday but he did eat much.  However, he had a good meal last night and has picked up his eating since.  He does not seem to be in as much pain and we have even cut back his pain meds.  Hid did puke a couple of times yesterday but this is not really alarming because it was just a bunch of mucus.  We hope he is starting to get that stuff out of his system.  His bottom is not so great but Jenni and the Doctors think it is improving.  His tac. level is still proving but I think the doctors are starting to get it under control.  By just looking at the guy, I think he is a little more alert and in a little less pain.  We hope this keeps up and now we are praying for growing bone marrow.  On a different note, Jenni and I are excited because Granton and Kaylynn are on the the way up right now.  Can't wait to see them and we are happy that Carver is getting good enough that Jenni should be able to spend a little more time with the other kids.  She has not seen them in close to three weeks.  I hear they are pumped too.  Thanks for continually praying. 

TLC

Carver is holding his own. He has required extra mommy time, TLC, and rest. We are doing our best to keep him as comfortable as possible. Last night he showed some true signs of pain. Typically, nursing has served as his comfort from feeling icky. Now he is struggling with it. He wants to eat, but his mucuscitis from mouth to bottom and all the way through has hindered his eating. Basically, he gags and chokes easily and shows discomfort with swallowing. Also, his bones are weak and hurting. All of this is due to the chemotherapy necessary to fix him. We are staying strong though and have even seen a smile squeak out of Carver today. The pain meds are working in his favor. He can at least be awake without crying as much. The good news is that his internal organs, kidneys and liver are all fine. The culture did not grow anything and he does not have a virus. His hgb is 9.1 after the blood transfusion. And, we will still be able to give him my milk as needed through a nose tube to keep his tummy satisfied. So far, he looks like a three month old as opposed to a 7 week old and his weight is steady...we have a little window of wiggle room. I can nurse him at anytime and hope to keep his interest as much as possible, especially with the pain and nausea medicine right before hand. Our plan is to use his tube before bed and first thing in the morning. We'll see how this works and always one day at a time.

I have found encouragement in the the fact that God will give me the wisdom to make the right decisions if I stay focused on him. I have to remember his help and presence whenever frustration, anger, or a stream of profanity fires through my head. He has given me peace despite the mental battle, and I have the future to fix my eyes on. An inspiring mom gave me these words of wisdom last night..."You can't fight darkness with darkness only with light." And, singing hymns to my baby has been an inspiration, as well. The verses bring lots of comfort. Some of my favorite encouraging lines include: 1.Marvelous, infinite, matchless grace, Freely bestowed on all who believe! You that are longing to see His face, Will you this moment his grace receive..Grace, grace, God's grace. 2. For Jesus shed his precious blood, Rich blessings to bestow; Plunge now into the crimson flood That washes white as snow...Only Trust Him. 3. O holy Child of Bethlehem! Descend to us, we pray; Cast out our sin, and enter in; Be born in us today. We hear the Christmas angels The great glad tidings tell; O come to us, abide with us, Our Lord Emmanuel. Love every word in that line!

I could go on and on so I'll wrap it up! I have been a little obsessed with hymns for a while and am now starting to memorize more of them. Thanks to a member of our care team I have a song book in my room. Occasionally, I hear a hymn in my head in the moments I might consider the hardest. I think to myself I should really be mad right now and instead a tune is playing in the back of my mind. Its exciting to realize that something I might not have handled so well in the past has suddenly become easier to deal with. I can only hope that I grow up even more whether I hear a hymn or not and with lots and lots of God's good grace.

Jenni

Hard Day

I don't have much time so this will be quick.  The doctors originally thought the 19 would be his worst day.  So far it is today.  Carver is in pain.  He wants to eat but it hurts and he has a lot of mucus in his mouth.  His nurse wants to put a tube down his nose but we want to talk to the doctors first.  His weight is good and holding steady.  He and Jenni are both very tired and not getting any good sleep.  Please pray.

WANTED: Eating and Sleeping

I have some good things to report and also some things to pray about.  First of all, Carver's white blood cell count has dropped and nothing has grown in the cultures they took yesterday which is good.  On top of that his temperature is normal again so also a big praise.  I do have some specific prayer request.  Carver ate well at 10:30 but ever since then he starts and gets a few swallows but then cryes and quits.  Jenni thinks he is having trouble swallowing and that is why he is not eating like he should.  As most of you know, we are really praying that he keeps eating so please pray that he gets over this quickly and starts eating again.  Also,  Jenni and Carver need some good sleep.  Everyone is watching Carver so closely that he is not getting much sleep and in turn Jenni is not getting much sleep eather.  It seems like everytime Jenni gets him to sleep and lays down for her own rest some reading or blood sample or something is needed and this wakes the little man up.  This does not make him happy and of corse if baby is awake, Mama is right there too.  They need a good nap and a good night's sleep.  Please pray for these things.  Carver needs lots of energy and so does his mom.  Food and rest are very important.  Jenni and I were talking about this and I told her I would put it on the blog.  I said, "As soon as I post this, people will pray." 
So there you go, I posted it.  Now, get to it. :-)

Sticking to the Game Plan

Today ended up being pretty calm. Carver did get 50mls of new blood and we did not seem to have any trouble with it. His temp. has been a little warm but not like the reading we got this morning. So now we are getting ready for "day 3" which is the day a doctor said wold be the hardest on him with the kemo from last week. By now I am sure everyone knows our game plan for this - PRAY PRAY PRAY!

Good Morning Smile

First of all, Carver just smiled at Jenni so he gave him about a dozen back.  This morning his temp. his 101.5 but he was bundled up quite a bit.  We unwrapped him and it came back down but he is still pretty warm and his white blood cell count went up a bunch so they went ahead and drew blood for cultures to see if anything grows.  He is still eating pretty good, actually he is eating right now, so they are going to turn of his fluids.  They don't think he really needs them and his heart rate has been a little on the high side.  Carver's hemoglobin level is at 7.1 and he automatically would get a transfusion if it dropped below 7.  They are going to draw a lot more blood so they decided to go ahead with a transfusion which should help his heart rate to come down as well. The doctor said they would probably have to give him more blood later anyway with all that they need to draw.  We are waiting to see what his tacrolimis level is.  If it is under 10 they will restart a bunch of drugs to protect him from graft vs. host disease.  On another note, Granton and Kaylynn are playing the part of Mary and Joseph at Lone Cherry Church Christmas Service.  Hopefully the don't get any stage fright.  I will give another report on how they did and how their little brother is doing later.  Thank you, Thank you, Thank you for all the prayers.  

"Day 1" in one day at a time

Today the plan has been to take it easy.  The doctors decided to give Carver a rest after his blood pressure and heart rate got so high yesterday.  His tacrolimis level is on it's way down.  Its highest reading was 51 and it was last checked at 18.  They want it to between 5 and 10.  It will probably be low enough tomorrow that they will start everything back up.  But today they gave his liver a rest and he did not hardly give him any drugs.  So we just have taken it easy.  Carver's great grandma and great aunt came to visit and it was good to see them.  Carver is still eating and we are praying he keeps this up.  Day one is wrapping up and we are gearing up for day two.  Knowing that people are lifting us up in prayer makes every day easier. Thank you!

Well I just left Carver, his mom, and his Grammy all sleeping in his room for the night. They are resting up for a new day tomorrow, which will be "DAY 1." "DAY 0" went pretty well. Carver did let his blood pressure get too high. In fact we almost moved to the PICU, but it went down just in time. A drug that fights graft vs. host disease called tacrolimes or FK506 (can't rember if that is the correct spelling, or number for that matter) gave him the high blood pressure but they gave him other drugs to bring it back down. He won't get as much FK506 tomorrow but it is hard to get the right amount with little kids. His heat rate went up after his blood pressure went down, but it was trending back down when I left. Anyway, he is doing very well. We are still praying that he will keep eating and all his numbers do what they need to do. Thank you for praying and I will try to give an update tomorrow. As for now I plan on a good nights rest.

POWER IN THE BLOOD!

I am sitting here in Carver's room and he is getting his new blood right now!  It is very exciting!  I keep hearing my dad, the church song leader, saying "There's power in the Blood!"  Everything is going well so far.  He does have a rash but it is nothing that is causing much alarm.  Carver has been very peaceful today.  He is still eating and it is our prayer that he keeps this up and won't have to get a tube to his stomach where he could forget how to eat.  Anyway, keep sending those prayers!  We are so thankful for them.  I am sure Carver's Grandpa will sing it out loud, very loud and I am praying that song holds true and there is "POWER! POWER! WONDER WORKING POWER" in this precious blood for our little man.

Hgb

So, his hemoglobin went up a little from 7.2 to 7.5. Still no transfusion yet.

Last Day for Chemo

O happy day, Carver is doing well with his chemo so far! Today is our last day, tomorrow is a rest day, and the transplant is on Friday! He has been playful and happy during the day and sometimes fussy at night with tummy aches. But, last night our time passed by quickly thanks to texting. Carver's hemoglobin level was at 7 last night so if it goes below that he needs a transfusion. This morning it was 13 which is unusual. So, they are checking again for accuracy. Since he's getting chemo it shouldn't have gone up that much so quickly. Oh, and baby Carver is starting to look like Mama now! At least my baby pictures anyway. Just cool.

Jenni

My Babies

Hello to Granton Lee and Kaylynn Sue today! We miss you very much and can't wait for you to see us and your baby brother again. We Love You.

Granton, who came to visit Mary to tell her she was going to have baby Jesus? Did Mary go to Bethlehem in a car and have her baby in a hospital? Kaylynn, Did Jesus have a crib like baby Carver? Where did Mary put baby Jesus when he was born?

Love,
Mom

Baby Talk

Today Carver and I have been interacting more. He gave me his first real grins and some sort of gasping noises. I wouldn't call it a coo but he was definitely trying to say something. He is now grinning at his toys under the jungle gym or play yard...whatever you want to call it. He's quite the mover. Oh, he just made a shrill noise. Most of the time he snorts, breathes fast or grunts like a pig. I mean when he's happy. :0)

Chemo

Carver and I need some sleep. Pray that I can think clearly. We are having trouble adjusting to the chemo schedule. The next three days should have the most interruptions at night. Thank you.

Jenni

Hickman Line In

So Daniel is right. Carver's little leak is not as bad as it sounds. The bleeding is at the site where the Hickman line enters the skin. The surgeon told me he added some powder to help the blood clot and stop the bleeding. That is why the procedure took longer than expected. So, my mind thought the problem was solved and the bleeding had stopped when they were done with him. But, when we arrived at our room I noticed the gauze around the site absorbing very quickly and I immediately called for the nurse to check it. They put pressure on the site and redressed it with some pressure gauze all while reassuring me that this can be taken care of. The doctor later told me that sometimes the fresh stitches can irritate the skin around site causing more bleeding. Also, that the heparin used during surgery helps to open the vein and thins out the blood. This made sense to me as I recalled the heparin filled tubes that lab uses to keep blood draws from clotting. Anyway, all that to say Carver is resting easy with his Giraffe friend and a nice dose of pain medication. If he lays still without crying the site should stop bleeding soon. We are continuing to watch it. The Hickman line itself is usable and draws fine.

Granton was real sweet today. He has been praying for his little brother every morning with the family. His Meme told me that he asked about Carver at lunch. He wanted to know the plan for the Hickman line. She said she would have to call and ask me. He told her to go get her phone. When she called I told her the surgery was scheduled at 4 and to pray that Carver would nap until then. She relayed the message to Granton and he told her he would just stay and watch the clock until 4 then! (He's starting to sound real familiar.) His Daddy said, "He's growing up!"  By the way, Carver did nap well today and has eaten since surgery.

Jenni

Post Hickman Surgery

I just spoke with Jenni and she was calm.  She told me Carver has nursed some after the surgery.  He is bleeding a little more than they anticipated.  It seems like everything is under control and and they have special prepared blood ready should Carver need it.  She did say that they have put a powder on him to help the blood clot and his bleeding seem to be slowing.  His nurse told Jenni that it looks worse than it is.  Anyway, I just wanted to keep everyone in the loop as to how they can pray.  Please pray for him to stop bleeding out of his opening for the Hickman line.  I plan on posting again in the morning with a new report.  We are trusting in the Lord with this and everything else.

Almost Go Time

Carver gets a Hickman line placed at 4 tomorrow. He will stop eating at 11 and only clear liquids until 1.

Transplant Plan

Carver's kidneys and heart look normal. He will receive surgery on Tuesday for the placement of a Hickman line. We pray that the timing will work out so that he is not waiting too long on an empty tummy. Also, that the operation runs smooth. Then, on Thursday he starts his chemotherapy and Friday, Dec.16th is transplant day! We are praying that Carver can remain comfortable through December even after the transplant. Some of the chemotherapy drugs might show side effects like nausea, mouth sores, and rash. The Hickman line should eliminate all the pokes he has endured up to now. Hopefully, this central line will remain infection free. That's all for now. Carver is still showing great weight gain. He's over 11 lbs!

Jenni

Kidney Test

Carver has an important test tomorrow. The doctors will examine his kidney function to determine the amount of chemotherapy he can handle. We pray that everything goes smooth with this test and the results are accurate. This will be done by a special x ray technique through his blood stream. He will only need an iv with this test as opposed to a urine catheter or a large amount of blood drawn (60 ml).

Jenni

Time of Thanksgiving

Jenni and I have enjoyed five days with Granton and Kaylynn here in Kansas City.  Their Aunt Neesie brought them up and then helped out by watching the baby when Jenni was with me and the kids.  It was so good to see them.  We miss them every minute they are gone.  However, we know they are having a great time while while they are on are on the farm.  While they were staying with us, I told Granton, "Meme and Papa are working cows today"  He said, "What? Without me!?"  Looks like he is turning into a cowboy and Kaylynn is getting more ornery by the day.  They are are so much fun.  As for Carver, he is getting bigger by the day.  He is up over ten and a half pounds now.  He loves to eat and sleep, he especially likes sleeping on his mom's chest. 

We have made a decision on his transplant.  There are a lot of details that I won't get into but we have chose to use cord blood.  This means we will probably start the kemo around the 7th or 8th and the day of transplant will be around the 16th.  If all goes well, Carver can leave Kansas City a hundred days later.  Obviously, we are praying for all to go well.  As for now all is well.  Jenni and I are watching a movie together in Carver's room while Carver is sleeping on On Jenni's chest.  We have have a lot to be thankful for, including all your prayers.  Thank you.

Two Donor Choices

As you know, writing blogs is beneficial for our family and friends to stay informed. But, it also helps to organize information and thoughts on our end, as well. I will do my best to explain what I understood from the meeting. Then, Daniel will probably write his perspective, also. Here's the bottom line. We met with our team yesterday afternoon for at least two hours to discuss Carver's transplant options. Daniel and I are both leaning toward the same match. However, we are still taking time to pray and process all the details. We want to choose the right match for Carver, of course, and our dilema is fortunate. Instead of just one good possibility, there are two. This is what we learned about both.

The female bone marrow donor is one choice. She is a 10/10 match that we considered for Granton three and a half years ago. She might still be a consideration for Granton in the future, actually. This bone marrow donor has a non-engraphtment (rejection) risk less than 5%. Also, the risk for future immune boosters (ivig) is less. This is what Granton takes now because of his b-cell setback. By the way, Granton's b-cell condition is likely the result of his fatal circumstances. We had to give him lower doses of chemotherapy treatment and infuse his transplant quickly so he could survive. The cord blood transplant was available right away. You might recall that scids babies typically don't live past their first birthday. Granton was already 8 mo.and super sick. Anyway, back to the donor option. This match could take a longer amount of time to set up--maybe 4-6 weeks from now. And, has a higher risk for GVHD.

So, we learned new information about the GVHD (graft versus host disease) in connection to unrelated bone marrow donors. Remember, GVHD occurs when the donor cells recognize that the recipient's body is different. The new cells start attacking the body like your immune system would attack an infection. Well, with the female choice Carver will have a 50-60% chance of Accute GVHD. Accute means during the first 100 days after transplant. Also, Carver will have a 20-25% risk of  Chronic GVHD which can occur anytime in life after 100 days post-transplant. Furthermore, because she is a female who has had children there is a higher chance for GVHD. Her cells are less forgiving. They have more experience detecting differences and might not recognize Carver's body as her own. Treatments like steroids would be used to correct the GVHD at different levels.

The next choice is a cord blood with a 6/8 match. Again, if we choose the cord blood match Carver will have less risk for b-cell complications than Granton because he will receive more chemotherapy treatment than Granton received. The cord blood has a 25- 30% Accute GVHD risk and even less for Chronic GVHD. A mismatch is more forgiving of GVHD because the cells are naive/babies. Other factors to consider are that the non-engraphtment (rejection) risk is 10 % and the cord blood can be available sooner. Also, we learned that other transplant hospitals are now only considering cord blood transplants. And, more cord blood transplants are being done rather than bone marrow, especially with unrelated donors.

Please understand that this is all very complicated to me. I try to explain it without confusion, but sometimes I confuse myself. And, on top of that I am a visual learner. Again, writing it out helps, too.

Daniel and I are praying and will make our decision tomorrow when we are both here at the hospital. I am also praying that Carver will keep nursing through the chemotherapy and after transplant. So far he is gaining weight and eating great. I am feeding on demand so that he will have enough practice and show interest in nursing when he doesn't feel well. This way we do not have to undergo alternative methods to feeding him.

Jenni

Bubble Boy 2 Moves In

We are officially settled in the BMT (Bone Marrow Transplant) Center now. We have moved from the NICU to another cozy room with more space. Our friend and child life coordinator decorated the walls with "Cars" characters. Lightning McQueen and Tow Mator are smiling above Carver's crib. His "bubble" also includes a bathroom, bed, recliner, and tv making a nice little living space. Daniel, Carver and I have been watching movies and soaking up a relaxing, quiet day. We are looking forward to our kid's company soon for Thanksgiving. Tomorrow, we meet to discuss our donor options.

Jenni

Possible Match

Before Granton received his cord blood transplant we were weighing our donor options. One of those options was a female bone marrow donor with a 6/6, 10/10 match. The option we chose for Granton was a 5/6 male cord blood. This was the right choice for Granton because he was so sick and still had RSV. We thought the bone marrow match would aggressively attack the RSV (something his body couldn't handle). So, today we learned that the female bone marrow donor is still in the registry. Our doctor already contacted the National Bone Marrow Registry to try to locate her. We are waiting to hear if she is willing to donate for Carver's transplant. Carver will receive a stronger dose of chemotherapy than Granton had, as well. When he is a month old his kidneys will be more developed. Then, we can proceed with the chemotherapy process  (approximately 1 week) followed by the transplant.

Jenni

Latest Family Picture

Carver's Medicine

I just wanted to clarify the medicines Carver is taking. He receives acyclovir for viral infections, fluconozole for yeast infections/thrush, and bactrum for bacterial infections. They probably sound familiar because Granton was taking them at some point, as well. Now, Granton takes a sub q medicine called hyzentra. It is like ivig only made so that he can receive it once a week instead of once every three weeks. And, as you know Mom or Dad can give it to him without supervision or in-home healthcare. Carver will also receive at least one more ivig treatment before his transplant. There is a risk that he might receive immune boost treatments at home like Granton. This trend is more common with the non-related cordblood transplants such as Granton had. Anyway, I thought that might be a question on some of your minds. But, this is not a concern we need to have right now. We are focused on the more important matters: healthy baby, the best donor match, and timely transplant.

This is my favorite swaddling picture. Carver gave me a cute smile this morning with eyes open!

Jenni

Weekend With Kids

Carver is doing well this week about eating and growing. He has a handsome/beautiful complexion and loves to listen to people talk. He is good natured most of the time. But, his red-headed temper comes out occasionally during bathtime or diaper change when he is hungry. Yes, he has soft red hair. Granton had blond hair as a newborn and Kaylynn had dark hair as a newborn. While their hair was different colors their features were a lot the same. You can definitely tell they come from the same mold. But, Granton and Kaylynn NEVER cried as LOUD as their new baby brother. He almost just yells at you and then calms back down quickly. The whole nursery hears him when he's mad, though.

Today, Granton and Kaylynn visited the NICU while riding in a hospital wagon. We let them look through the window at baby Carver. They wanted to see him and I wanted them to see why we here. We had a great visit this weekend. They played at three different parks and Granton got to play at his "favorite" hospital. That is his version of Children's Mercy. Carver is now wide awake soaking up time with his Dad. Dad was keeping brother and sister occupied and missed holding him.

Soon, sometime this week, we will find out the official result of SCIDS. Carver has another CBC lab tomorrow. Otherwise, we are enjoying our time in the NICU waiting for the transplant. I stay busy nursing, pumping, eating, napping or reading a book. I also have a DVD player now for movies and this computer to help with the updates. I have not been bored yet. One day I was anxious to go out doors. But, our room is isolated and quiet. I have big windows to let in sunlight. And, I love to cuddle Carver. He can pretty much stay attached to my lap no matter what I choose to do. Also, he loves to take his medicine. He nurses them right down from the syringe like Granton used to. It's cute.

A verse I have chosen to memorize specific for this time and the holiday approaching says: Be joyful always, pray continually, give thanks in all circumstances for this is God's will for you. 1 thess. 5:16-18. I feel fortunate to be on the flip side of things now compared to our last stay at Children's Mercy. I am more aware of hurting people around me. I have been able to pray with two other moms in the nursery. And, have had many conversations with other nurses about hard circumstances they have gone through. This makes me thankful to know that I am not alone in my struggles and again allows me to see a positive perspective. We are grateful for your prayers.

Jenni

Granton and Carver are the same in more ways than one

We got a little more news on Carver yesterday.  He does not match Kaylynn so she will not be his donor.  However, he is a perfect match to Granton.  Now Granton can't be a donor; in fact, we are still trying to get Granton's B cells to come back and we should get some test results in January on that.  Even though Granton can't donate bone marrow, this is still a helpful because the doctors found a match for Granton three and a half years ago.  I am sure they are looking her up right not.  I hope she is still around and willing to donate.  They will do a compleat search for Carver anyway but it is good to know someone was found over three years who would match Carver.  Also, our Dr. told us there a lot more people in the donor bank then there were when we were searching for Granton.  Anyway, I am on to wrestling practice.  Please keep praying.

More Good than Bad

Thanks Denise for updating everyone.  Well, the last few days have been a bit crazy.  On Thursday I left wrestling practice to bring home a healthy and happy mom and baby, but one phone call from K.C. changed all that.  In less than one hour things changed from "everything is fine" to "Carver has SCIDs." Let me take a quick time out to explain how this was confused.  Carver had a CBC test that showed all his blood count numbers were normal.  He had white blood cells so it was assumed he had an immune system.  However, a more detailed test was done that took longer and it showed he was missing the exact same T cells that Granton was missing.  So anyway, Jenni and I rushed home to pack a few items and then we put on our masks and brought Carver to Children's Mercy.  Obviously, this hit us very hard.  I had stayed up most of the night with Carver the day before to make sure Jenni could sleep. So I was very tired when we found out.  I learned with Granton that we have to get our sleep or emotions get us.  However,  Jenni and I had a good drive to K.C. as Carver slept.  This was not what I had expected an hour or so before, but the Lord has brought us through much harder things then this before.  This is obviously similar to what we went through with Granton but there are some very big differences. Let me break down the "good" and "bad" with the bad first because I like to end things on "good" notes.

BAD-
I think the thing that is heaviest on our hearts, especially Jenni's is separation.  Granton and Kaylynn are as happy as can be but they can't be with us.  Carver requires all of Jenni's time and energy and kids are obviously not allowed around him.  We are all going to spend a lot of time apart.  Jenni has never been away from the kids like this, not even close, and I am a family man.  Outside of exercise, I don't have any hobbies. I love family time.  So this will be hard.  On the bright side, Granton and Kaylynn will have each other and always be with people who they love very much and love them very much.  Jenni will have Carver to hold and care for and Carver will have Jenni.  I will stay very busy with teaching and coaching and Jenni and I have set aside time for a phone date everyday so you can expect the phone to be busy after 6:45.   I will also call the farm a bunch but the kids are usually to busy having fun to talk to dad and that is a good thing.

The other main head of this multi headed monster is Time.  Carver will be in the NICU for about a week or so and then move to the floor.  Jenni will then move into his room with him as no one is allowed to sleep in Carver's NICU room but Carver.  He does enough of that for two people :) Hopefully, we will find a donor; there is a 25% chance it will be Kaylynn.  If we find a donor quickly, Carver will go through a week of anit-rejection drugs.  If I remember correctly, this is a kind of kemo.  Then at six weeks, he gets a transplant.  He will have to stay here for a minimum of 100 days after the transplant.  However, he may be allowed to live in the Ronny Mac house for the end of that.  If so, the kids and I may move in the Mac house and we will all be together again.  We haven't figured that out yet.  But I am going back to work next week to save my sick days for living here in the Mac house post transplant in case it is an option for us to all live here together. 

Of course there are many other little things but time and separation, or perhaps I should say time of separation are our biggest challenges right now.

GOOD-
Carver is healthy.  It is so nice to hear the Dr. say after rounds.  Well, everything looks good, we are just going to keep doing what we are doing.  This is mmusic to my ears.  I hated rounds before because we would have to hear about bad results and numbers that would likely result in Granton's death every time after rounds before.  Once again our kid does not match the other kids in the ICU but this time is because he is so HEALTHY.  On top of that he is a big baby so he even looks different.  You may remember I felt shell shocked after watching Granton crash so many times and bells and dinging in a hospital room just set me on edge.  Well, Carver has a very slow resting heart rate and it causes the monitor to ding.  I still jump and look at it, but now I find good numbers.  He is relaxed and his heart does not have to beat many times and his breath rate is normal and he keeps a high oxygen saturation level.  So in stead of my heart dropping and my muscles tensing and eyes tearing when I see the monitor, my response is "Oh, cool." 

We also have more knowledge then before and we have it sooner then before.  It is so nice to know what is wrong and have a plan to keep it form getting worse.  I will say it is a bit daunting because we KNOW what is ahead and it is not easy.  However, I would choose this way every time.  I hated sitting in the conference room for day after day going over hard things to swallow.  This time we understand what should be ahead and the doctors understand what we understand. 

The biggest comfort is knowledge that our God is an awesome God and he will see us through.  Jenni and I always said we want to honor him in everything and to God be the glory.  This is no different.  Also, we take comfort in knowing there are many people praying for us.  I immediately teared up when I saw a little text message yesterday that said the FCA got together and prayed for you this morning."  Things like that are so wonderful.  So keep praying.  If you read this blog back when it was made for Granton, you know that regret looks back, worry looks around but faith looks up.  Lets all keep praying and keep looking up.

His Strength

Well, it is Denise again sending everyone an update. We don't have a great deal of news but I know that everyone wants to know any news we get.
Carver is in the NICU for the next 2 weeks, they have him on several antibiotics to prevent any infection as well as IGIV to give him an immune boost. We know he is getting great care there the only problem is that Jenni is not able to stay the night there with him, so she is staying at the Ronald McDonald house for now. In about 2 weeks he will move to another wing where Jenni will be able to stay all night with him.

It never ceases to amaze me how well Daniel and Jenni handle these difficult times. When I talked to them earlier they sounded good, and were getting a plan in place to take care of all the kids. Do continue to pray for their strength as it is very difficult not having the family all in one place for a while. I know without a doubt they would tell you that it is not their own strength but God pouring his strength into them.


2 Corinthians 12:9  And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

Baby Carver

There is a lot to update everyone on so I will do the best I can. Just so you know this is Denise (Daniel's sister) doing the best I can to relay the information.
Baby Carver arrived on Tuesday at 5:30 pm. He weighed 9 pounds and is about 22 inches, I am not for sure about the length. But ten fingers, and ten toes, and a head full of hair.
Of course they started testing right away for SCID's and they found out today that he is positive for SCID's. Carver has been taken to Children's Mercy in Kansas City so they can look for a donor and begin the process for a transplant. We are thankful that we know what to look for early instead of after he is sick like it was with Granton.
Granton and Kaylynn are in Kansas with my parents for now. Right now this arrangement is indefinite as Carver will have a minimum of 140 days in the hospital. They are doing well playing on the farm and getting lots of attention.
Please be in prayer for the whole family. Carver is doing great right now but we know there are some rough days ahead. Granton and Kaylynn are having a blast but I am sure this will not be so easy on them either. Jenni is in Kansas City with Carver, she has just had a baby and is now seperated from her family. Daniel is doing everything he can to work and take care of his family that is scattered for the time being.
We have seen God work so many miracles in our lives and we trust that He is coniniuing to work. We know that we were never promised a life of ease on this earth that is cursed by sin, however we are promised that He will never leave us or forsake us and He will never give us more than we can bare.
I was talking to Jenni several months ago and we were talking about all of the people in the bible who we look at with such adomration. But none of those people had an easy life. It is through their trials that we see God work, and what a great work He does. While I have so many prayers for my brother and sister and kiddos, my number one prayer is that people will see God and his greatness through these struggles.

Thankful for "Friends"

Granton and I are going back to Seattle on Oct. 17th for the second part of his procedure and we should have results about eight weeks or so after that.  He is not as excited this time but said it will be fun if we eat pizza again when we get there.  So I think I can handle that.  He is doing great.  We are praying a lot for his little brother, Carver, who is just about here.  If he has SCIDs, the kids will have to move to Kansas with Me Me and Papa for a while while Jenni and Carver will live in KC where I will be most of the time.  Once Carver's liver is ready for chemo, he will have a week of it and then a transplant.  Best case scenario is that he gets out of the hospital 100 days later.  If Carver is SCIDs free we will just keep him here and have a "normal" baby and take care of him like any other kid.  Obviously, we are doing A LOT of praying about this.  We know many people are and this is very comforting.  I have past student who is a solder in Afghanistan and has been and is in a lot of very dangerous situations.  His mom keeps me, and many others, updated about what we can pray for.  Her last e-mail had a quote from Todd Burpo, author of Heaven is for Real  It really touched me after everything we went through with Granton and everything we are praying about for Carver.  The quote is, "I thought of the times where the Scripture says that God answered the prayers, not of the sick or dying, but of the FRIENDS of the sick or dying--the paralytic, for example. It was when Jesus saw the faith of the man's friends that he told the paralytic, 'Get up, and take your mat and go home.'"  We know we have many friends praying.  Thank you all.

We're Back

I don't have much time to write.  Just want everybody to know Granton and I are back from Seattle and everything went without a hitch.  Beautiful city and good experience.  We will not get any results back for quite some time.  Jenni is doing well with the pregnancy.  She says Carver is by far the most active baby she has had.

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. 

Goodmorning. Here are some current pictures of Granton and Kaylynn. They have been having a good year so far. Granton is officially potty trained now (accomplished in 2010), and Kaylynn is trying to potty train herself. So, far I have not been real urgent about completing the task. They started learning some hymns and verses in January. Their favorites include Stand up Stand up for Jesus, Standing on the Promises, Nothing but the Blood of Jesus, and Victory in Jesus. Granton and Kaylynn both like to use our fireplace as their stage. Also, Granton can sign a few easy verses like Honor your father and mother, Love one another and God is love.

A few of their favorite things to do include: playing matching games, playing in the chicken coup, jumping on the neighbor's trampoline, and shower or bathtime. Recently, they discovered the rope and rings at the weight room which they love to swing on. Granton thinks he's Buzz Lightyear. And, something funny...Granton and his buddy Avery found a bag of yarn in the closet and built their own "instalation." They called it a kite. The yarn was thrown off the balcony and wrapped up and down the stairway so that you could see string above your head. It was quite creative and they had fun. I told myself to let them do it and just throw the yarn away later to make it simple. I wasn't about to unwind the tangled mess so scissors came in handy after a few days of enjoying the hard work. Daniel asked me what I was doing the whole time this was going on and I said, "just watching."

Happy to brag

We haven't posted anything on here for a while which is a good thing because Granton has been doing very well.  This has not changed.  I just want to brag on him a little bit.  He does still get his IVIG once a week and he is getting more "brave" with the needle.  But I am not posting about his medical stuff.  This guy loves letters and books.  He knows all the sounds letters make and he can read some words.  We think this is pretty cool since he is only three, but we have not gotten too excited because all the words he reads are words that he has been taught.  He knows what sound the D makes and and what sound the A makes but people have shown him the word "DAD" so it is not that big a deal that he can read this word and others he has been taught.  Last week he went to Kansas with his mom and sister.  My sister caught him staring at her sweatshirt and making sounds:  "Gu...Gu... Gu...  AAAAA...  PPP...  Gu...AAAA....PPPP  GAP.  That says Gap!"  I think this is the first word he has sounded out and read without any coaching.  Smart little guy!  Also, this morning his sister was fussy and he gave her his teddy bear and sit with her in the recliner and put his arm around her.  It worked and she settled down.  He is such a blessing.  We can never thank everyone enough for all the prayers for all the times it looked like we were loosing him.  Thank You and God Bless.