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.