It’s been awhile since we have wrote, sorry for that, time has definitely gotten away from us. We are enjoying the milestones that Ezekiel is hitting every week but also readjusting to a new rhythm of life in which our last rhythm took us 2.5 years to develop.
Before his kidney transplant, we had to stick with a strict morning/bedtime routine. We had to start our routine by 6 pm every night so we were able to hook him up to dialysis by 6:30pm. It ran for 12 hours at the beginning and then towards the end of our dialysis journey it ran for 13 hours. Thirteen hours every night Zeke had to be in his crib, or right by it. He couldn’t go into his sister’s rooms and play, he couldn’t go anywhere once he was connected. But now, NOW he gets that freedom! NO MORE DIALYSIS! He has been loving every minute of bedtime routine, he’s even able to go to bed at the same time his sisters do! They all brush their teeth together and get to read books together in their beds.
Even though we don’t have a strict bedtime anymore, we still have quite a heavy schedule of things we must do before he goes to bed and throughout the day. Zeke has a fluid goal that he must meet every day so he doesn’t get dehydrated, so timing of water/PediaSure boluses are a must. We make sure he has his last bottle before 7pm so that he can have his immunosuppressant drug at 8pm which we can’t give within an hour of him drinking a bottle. We also have to irrigate his vesicostomy (the opening into the bladder from the outside of the body to allow urine to drain) with antibiotic solution every night, connect him to to oxygen, and his continuous feedings through his G-Tube at 9pm. We are very fortunate that he still cooperates in the midst of his new found freedom.
Zeke has been amazing throughout this whole journey. I know they say kids bounce back from surgery faster but man, he has done amazing. It didn’t take him long after his last major surgery at the beginning of October to regain the strength he had. He is walking, running and even jumping! Things that all almost 3 year olds should be doing but Zeke was unable to. He even climbs the ladder to the girls bunk beds, YIKES! The girls are really good about helping him and getting him down from things he’s not supposed to be doing 🙂
Also, since transplant Zeke’s vocabulary has expanded tremendously and is actually taking in short sentences! AND…he’s eating real food! You guys….it’s incredible! I mean it truly is…he’s still not up to “normal” but he went from eating maybe 5 bites of pureed foods with gagging to being able to chew and eat chicken nuggets, mac and cheese, pizza, and anything his sisters are eating, in small pieces of course and not much but he’s working so hard at it!
Its amazing how far he as come in a short 5 months. He’s getting taller and gaining weight every day too! It’s amazing to watch him sprout up like a weed. All the doctors told us he would excel and catch up with his peers in the months following transplant but never realized it would actually happen. He still has a long way to go but he’s doing an amazing job and will continue to have all of our therapies to help him out. We are so incredibly proud of him.
As for me, Katie, I recovered well and am now trying to get back into the swing of going to the gym, working full time, and keeping track of all 3 kiddos.
Overall, we are super busy with life! Trying to keep Zeke healthy is a challenge. He seems to be getting snotty noses, and coughs left and right. We still don’t bring Zeke out in public, and it has been a challenge to figure out timing of everything so we can avoid taking Zeke. Thank goodness for family who is always willing to watch the little man while we take the big girls to their activities or just run simple errands to get milk and eggs.
We continue to have followup doctor appointments every 2 weeks in Cincinnati, OH. One of us will drive up with Zeke on a Sunday morning and be back around dinnertime the next day, and then the other will stay home with the girls. There has been talk about being able to switch to monthly doctors appointments in January so we are keeping our fingers crossed!
We hope everyone had a wonderful Thanksgiving! We are so very thankful for each and every one of you! We are also wishing everyone a MERRY CHRISTMAS!!!! This is our favorite time of year!
