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