We are a month out from Transplant and both Zeke and Katie are doing great! and there is so much to share so hang in there.

Zeke has had more energy than ever before and is babbling non-stop with new words everyday.  We are settling into a new routine with all new medications.  We started out with 12 new medications to learn, but will slowly get rid of them over time.  We have already gotten rid of 3 medications so far on this new journey.  He will end up on 2 of these medications for the rest of his life, which are his immunosuppressant drugs.  For all of you wondering what those are called they are Prograf (Tacrolimus) and CellCept (mycophenolate mofetil).  He takes them twice a day and his blood levels determine the dose for the Prograf.  Zeke is such a big help too, he loves to try and connect his G-Tube by himself and helps push is medications into his tummy.

He has developed so much in just this last month too.  He’s almost walking by himself, he just needs to hold on to 1 finger and even with that we are not really helping him, and started exploring new foods.  We are filling out a food journal this weekend to give to our dietitian so his calories can be counted in hopes to decrease the amount of PediaSure we give him. Unfortunately he does not like the taste of the PediaSure so we have been using his G-tube a lot lately.  We have tried all the different flavors and even a different brand thinking he might like the taste better but hasn’t worked yet.   But the more he eats the less PediaSure we will have to give him so hopefully he just keep eating more and more.  

This last Tuesday Zeke had surgery to get a Mediport placed and a stent removed in the ureter of his new kidney.  Both the surgeons said he did great. The Mediport will be used to draw labs for easier access. Poor buddy inherited mommy’s veins that are hard to stick for blood draws.   It ended up being around a 2 hour surgery, and I (Katie) am so thankful for my parents who came and stayed with me this week and sat with me while I waited.  They were a tremendous help and support.

David was able to travel back to Peoria for the week to be with the girls.  So glad he was able to get work done and he was able to be home with Addilyn for her first day of First Grade!  She had a great day, there were a few hiccups that morning, David said, but overall she had a great day.  Eleanor will get to start 4 year old preschool next week as well.  They had such a fun filled week with their dad, they rode their bikes everyday, got ice cream, and even went to the Uthgroop’s JrHi Dart Wars night.  

This weekend David and the girls were able to drive to Cincinnati to see us.  Words can not express how happy I was to be able to see the girls again.  Four weeks without being able to hug them and hold them was way to long! Thank goodness for FaceTime, I don’t know what we would do without technology!  Zeke was so happy to see his sisters too!  It’s so fun to see them play together, you can tell they all missed each other.  Zeke showed them all his new toys and all around the apartment.  It was so fun to be a family of 5 again.  All we need to be complete is our dog, Tucker.  

Now it’s time for me to travel back to Peoria with the girls, and David will stay with Zeke for couple weeks.  Pray for us as we travel and get settled into our new routines.