Well, my first afternoon/evening with all three of the kiddos since Madison had her g-button placed.... Needless to say I still have a full sink of dishes, laundry all over the floor, and two kids still awake! Mornings and evenings are insane for Madison. In the morning, I administer three oral meds through her g-button, 5 meds through her broviac lines, a feed through her g-button, apply three meds to her bottom, and three to her body...... In the evening, I do all of that plus two more oral meds through her g-button, one more IV med, a g-button dressing change, and hook her up to TPN that runs throughout the night. In the midst of all of that, I'm bathing all three kids.....and getting their pjs on.
Thankfully, I didn't lose a kid in the apartment and they are all clean! Last year at this time I would never go to bed with dishes in the sink or dirty laundry on the floor, but life has changed! The dishes will be there tomorrow and the laundry too! Finishing our busy evening reading our verse of the day, the Christmas story, and praying for Kayley and all of our other friends that are sick. My grandpa has always said, "Sis, my cup is running over and I'm drinking out of the saucer." Today I fully understood that saying! So blessed!
Madison's liver numbers are still really high so more will be done on Thursday. As we are very concerned we know God is in control. Please continue to pray for a calm rest of our year.
Isaiah 9:6-76 For to us a child is born,
to us a son is given,
and the government will be on his shoulders.
And he will be called
Wonderful Counselor, Mighty God,
Everlasting Father, Prince of Peace.
7 Of the greatness of his government and peace
there will be no end.
He will reign on David’s throne
and over his kingdom,
establishing and upholding it
with justice and righteousness
from that time on and forever.
The zeal of the Lord Almighty
will accomplish this
We had a wonderful weekend! We had much needed family time and rest! We are now energized and focused on finishing out the 2015 year.
Ryan will spend the upcoming weeks finishing our house projects, deep cleaning the house, sanitizing all of our personal belonging, and getting them put away in our home. We are praying for calmness the last weeks of 2015 and praying to be home mid-January.
Madison will continue with her bi-weekly clinic visits, labs, and we will begin the process of switching IV meds to me giving them through her g-button. Madison's liver has caused a concern so I'm sure more test will be done on that in the upcoming week. In addition, we are praying for some more answers on this horrible disease from St.Jude.
Harrison and Maebry will be adjusting to city/isolation life in the upcoming weeks. They will have blood work done on Tuesday to check counts. We plan to begin our home school curriculum and also a schedule. I'm so excited to have Harrison and Mae here! I'm excited to see the improvements Madison makes in the upcoming weeks.
The kids and I have started this scripture challenge. I have read to them the scripture and will be writing and posting the verses throughout the apartment. My kids are watching me as yours are you... Our kids seeing us in God's word is important. Our kids need to know where we turn to in all seasons of our life. Please consider joining me in this challenge.
“How do I help?” I have heard this question several times and truthfully if I had a loved one going through something similar I would ask the same question. Having a child with immunosuppression or immunodeficiency makes some ways people are used to helping impossible. For example, no buying them flowers, making them dinner, coming over to visit (especially during flu season), etc. See what I mean “How do I help?” Since I’ve been in this season God has given us not only people who want to help, but also families that are in our current situation. Here is a quick list I have come up with to answer that “How do/can I help?” I pray this helps all the families that are in similar situations as ours.
Usually, we are at Hoover farms the day after Thanksgiving. We always pick the biggest and fullest tree they have! Since we can only have an artificial tree this year we had to change our tradition.
So... I went to Target and found the cheapest tree I could find! We aim to have a real tree next year! Needless, to say Ryan and I were laughing as we were putting up the tree. We again were reminded that the tree doesn't make or break the holiday season. We celebrate Jesus being born and focus on the relationship we have with him.
We enjoyed making the apartment "Beautiful" while listening to some Elvis Christmas Music! We plan on taking the kids to look at Christmas lights this evening and watching old Christmas movies!
Madison had blood work this morning so we were on the 4th floor for a couple of hours... Her liver enzymes are high so we will be looking more into that on Monday. I had a wonderful conversation with Dr. Bhatla and she has already sent an email to one of the doctors at St.Jude's hospital she knows... Harrison and Mae will go to clinic on Tuesday for their monthly labs.
Madison's viral labs came back from the biopsies done last week and the HHV6 is now in her colon, esophagus, and gut. We have decided to decrease her anti-rejection meds in thinking her body will be able to fight off the virus. We have to be careful when doing this that the GVHD stays at bay. Madison was swabbed for the rhino virus (common cold) this morning.. Since Maebry is positive we have to closely keep an eye on Madison! As of this morning she is still negative!!!! We will continue to be crazy about washing hands!!!!!!
I'm beyond enjoying Ryan and the kids here! The last two days have been filled with QUALITY time that we have desperately needed! The rain makes it even more awesome as we all snuggle underneath blankets!