Day 319: Roll with life...
A beautiful Memorial Day weekend with tons of sun and heat. Our weekend was a little all over the place, but that is our new normal. Plans were cancelled, changed, and just plain "fluid!" The rain Thursday and Friday, family being sick, and just life kept us from some festivities, but we still had an awesome weekend.
We had our first movie night in the basement Saturday evening. It was just nice being home with all three of our babies! Sunday evening our family was split apart. Madison woke up from her nap with 101.9 temperature so I took her to STL while Ryan took Harrison and Mae to a family event.
They wanted to keep Madison, but thankfully they let us go after a dose of iv rocephin. Cultures so far have not grown so I'm assuming she has another UTI. I will be taking a urine sample in tomorrow.
Yesterday, I spoke to the children at Christ's Church (Clay Co. Campus). I wonderful time sharing the importance of prayer, making prayer bracelets, and just having fun!
Today was spent resting and just being togethrt! Harrison's first t-ball game is Thursday so we spent most of the morning practicing. This evening our Sidwell family came over! Just love hearing all the laughs.
May is coming to a close! Over the course of the week I'm going to be sharing the "cleaning out the barn" process that started last week. What is an area in your life that you need to deal with??? I thought I was dealing with barn cleanup, but in reality it had little to do with the barn! To be continued...
Day 317: Purpose.
I pray daily for God to heal all the sick! I pray daily for peace and comfort for caregivers. In the last 24 hours, God has placed four different families in my path. All of them are medically different, but there prayers are the same.
Whether you are holding your husband's, dad's, grandfather's, or child's hand the grieve, the fight, and the love is the same.
God I ask that your will be done. God please wrap your arms around the questions, the hurt, the tears, and the pain.
God, I know we all have a purpose! I know you have a plan. Please use me! I will BE what you call me to BE!
Day 315: Exhaustion
Clinic days for us and all of our friends is exhausting. Many of us travel 45+ miles one way to STL, spend 4+ hours in clinic, and then travel home. It should be no surprise Madison fell asleep at 6 and I'm heading to bed at 7:30.
We love our Glennon family! Please continue to pray for all of them! Please pray specifically for the following: Gabriel will be heading to CHOP next week to begin t-cell therapy, Fallon has strep throat, Declan's parents car broke down, and Madison's kidneys.
Madison had an ultrasound of her kidneys and seen the urologist today. She will have a renal arteriography next week and will see a nephrologist June 24th.
Overall Madison is doing awesome!!! She looks great and has officially gone one week with no cyclosporine (anti-rejection medicine). She did have a skin flare up on her eyes at the beginning of the week, but as of this evening all gvh rashes have been responding to creams! We are praying the broviac line is out by July. Madison still has HHV6 in her gut so some IV meds are still needed. Praying that with no cyclosporine the new immune system will help get rid of the virus.
Bubble Time! This is a fun and easy way for me to keep Madison happy while in clinic!❤️❤️ We are still collecting the following items for Madison's birthday! The items are going towards "Toys on a Mission!"
Here is is a note from Rachel who has organized this mission----"
~ ToYs On A MiSsiOn ~
We are collecting toys for St. Louis' children's hospital - Cardinal Glennon until May 31 in honor of Madison Lash's 2nd Birthday.
Madison received a bone marrow transplant on July 16, 2015 and lived in St. Louis through the end of January 2016. The Lash family made a lot of friends there and continue to build on those relationships. Madison goes to the clinic at Cardinal Glennon twice a week.
On June 14, Madison turns 2!! Help us celebrate by donating toys for children who may have short or long stays in the hospital.
Thank you to those who have already donated!!
DASH FOR LASH GLOW RUN!!!!
THE RACE ON JULY 16TH AT ROGIER PARK IN VANDALIA IL WILL BE A GLOW RUN! REGISTRATION BEGINS AT 7PM AND RACE BEGINS AT 8PM!!!!!!
Day 314: Amazing Weather!
The amazing weather mixed with all the outside fun we've missed out on the last year = over doing it! We just love to be outside so naps will have to wait! I've been working on cleaning out the barn! 6 years of just throwing and running= mess! Yesterday was the unload process and today was putting away and selling what we no longer need.
We love to swim! After lots of conversations we decided not to put our pool in this year! Madison can't swim with her broviac in and honestly anything we can't do together isn't worth doing! Several of our family members and close friends have pools so occasionally I will take Harrison and Mae on pool dates! I just can't even process Madison standing at the door screaming because she wants to swim!
In Kenya, painted tires were all over the place so decided to clean-up a few tires! I have more if you like the idea! Free of charge! Harrison and Mae had a blast with this project and even picked out the colors!
Praying you all are having a wonderful week! Madison has a full day in St.Louis tomorrow! EKG, ultrasound of her kidneys, visit with urologist, visit with Bhatla, and labs! Please pray for only good news!!!