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Prayers for Nephew

Waiting Game​


Journal entry by Patrick Schaller — 3 hours ago

Just wanted to let everyone know how he’s doing, which is great.
The doctors have been surprised that he hasn’t started to feel worse yet but then again Jedi has never presented as typical!
We just keep enjoying each day and thanking God for his many blessings. We will continue to wait until his counts go up signaling that his new bone marrow is on the job.
We fill the days with lots of snuggling, Xbox, playing in our little hallway and ice cream!

Thank you all for your continued prayers and support. The many cards and gifts help break up each day and bring a smile to his face.

This week, with his birthday on Tuesday, we pray that the Lord continues to strengthen Jedidiah’s body and spirit. That he continues to witness through his work in Jedi. That Jedi’s body moves into the next stage of engraftment successfully and that the Lord makes it obvious to all that he has worked great things in Jedi’s body.
 
Today we celebrated Jedi’s 11th birthday and what a great day it was!
He woke up in a good mood and quickly told me there was something “weird” in his mouth. I checked it out with a flashlight and it appeared to be a blood blister on his cheek. He said it was a little tender but not too bad. Shortly after he said it popped and hurt a little more. The doctors took a look at it and said it could be the start of some mucositis. Between that and his sore throat Jedi decided to start taking his medicines through his NG tube. He’s still eating fairly decent by mouth. At first he felt like he was not being strong enough by using the tube, but daddy was able to convince him that he is super strong and smart to use his resources It is no fun to take medicine, so this will give Jedi’s mouth and throat a break, so he can still eat something and not be in a lot of pain. This is just a temporary thing until his numbers come back up and the sores go away. Wow, we didn’t realize how much time in our day was actually devoted to taking pills one at a time! This will be a break for all of us, so we are thankful
Other than the sores Jedi is physically doing well. His white count continues to jump around (all neutrophils and they said this can happen) and his platelets are declining (expected); all other labs are pretty stable. We continue to pray that his body is moving in the right direction and accepting the donor cells
So onto the celebration: Jedi was definitely feeling the love today and wanted me to thank everyone on CaringBridge who made his birthday special in so many ways. Window visits, singing to him, cards, gifts, balloons, signs, cakes, oh my! The staff here is absolutely amazing. The doctors sang to him, the nurses sang to him, they made him signs, gave him gifts and even got him a cake! (He can’t have outside food unless it’s prepackaged snacks) He’s also quickly wallpapering his room with the cards and pictures from you all! The nurses have said they have never seen so many cards for one kid! What an absolute blessing to be loved and thought about by so many truly....thank you so much
Today we praise and thank God for blessing us with our sweet Jedi for 11 years! God started a good work in him all those years ago, and He will continue to do that through this whole journey!
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”
‭‭Psalms‬ ‭139:13-14‬
 
Happy birthday little trooper ! As the dad of an 11 year old daughter my prayers are with you , each and every one of you! I have witnessed the power of prayer personally when my son had a wreck, we have One who will intercede on our behalf , through our prayers mighty things are possible. I can do all things through Christ who strengthens me. My prayers are for a full recovery , peace through Jesus Christ who ensures our hope. To you Jedi, Happy birthday , and wishing you many many more !
 

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