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.