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.