I should probably explain the strange picture in today’s post. Many parents will tell you, one of the greatest desires we have for our kids, other than their relationship with God, is that they would get along… in fact, I’ve spoken to many parents who dream of the day when their kids would be great friends as adults. We’re certainly no different. We would rather have never met Doernbecher Children’s Hospital, though we loved the care our grandson received there. My life would have felt totally complete had we never found ourselves a part of Randall Children’s Hospital, even though they’ve been amazing with Justus. But over the last 71 days there have been many bright spots and highlights. One of those for us has been the way our kids (there are some young adults we call our kids whose last name is not Pritchard) have rallied together around their sister’s family. Last night, four of my kids went to Portland to offer some support to Justus’ parents. The result was Jason and Alyse going home with Amaya and leaving the four aunties and uncles with the little ninja! But not before Alyse (you gotta love her) handed over 2 pages of notes and directions! Hence, the picture. The good news is, Alyse literally spent all day with her daughter only returning to Randall for dinner. What a sweet day for her and Amaya. In case you missed it, yesterday’s update was all about rest, specifically resting in the Lord: Day 70-18 – Resting in the Lord.
Here is a little journal of Marisa, Tana, Jonathan, and Dani’s day with Justus!
Last night and today we had the privilege of serving our sister and her family by staying with Justus at the hospital over night while Alyse and Jason went home with Amaya to sleep in their own bed. You thought RT stood for respiratory therapy, well you’re wrong. RT stands for Reinforcement Team, and our RT was made up of, Tana (brother) Danielle (sister) Jonathan (brother in law) and Marisa (surrogate sister).
We arrived at Randall around 5pm and said our hellos to Justus and the family. We spent the next couple hours being taught to care for Justus… how the feedings work, when to give him water, when to have everything ready for PT the next morning. As soon as we felt comfortable (or when Alyse felt comfortable), we kicked Jason, Alyse, and Amaya out of the hospital and sent them home. That night we split into two shifts; two of us awake until 4 am, the other two awake from 4am until Justus woke up around 7am. Around 730 we were all awake and ready to experience what our strong boy goes through every day. 8am he had the other RT come to see him. Then we gave him his delicious breakfast prepared by his mom (through his g-tube of course) and not too long after we had him dressed and in his chair to start his day with speech therapy.
There were four of us escorting Justus to his different therapy sessions. I’m sure it looked like Justus and his little entourage! He must have been showing off because three different therapists made multiple comments on his improvement since the last time they saw him. The ST (speech therapist) played a game with him to affirm his actions. He would press a button to make his favorite song come on. The more he touched the button the more he heard his favorite song. Then we practiced giving him choices and to try to communicate what he wanted, for example bubbles or music. We would take any indication he was trying to tell us he wanted one or the other. So we asked, “Justus do you want bubbles or music?” and he would let out a little groan and move his hand towards the music. So we’d say again, “Okay Justus, you want music?” He would groan again so we would blast the song and sing and dance with him.
With no breaks in between we went straight to OT (Occupational Therapy) and PT (Physical Therapy), which right now look very similar. We went outside to get some fresh air and practice rolling a ball down a hill. Remember, each of these sessions are only 30 minutes, so by the time we get to one place and get Justus comfortable and happy doing his exercises, its time to move to the next session. We moved back into the gym where we got Justus in his braces to practice some crawling and walking motions. Then she had him work his left side a little bit by leaning on his left arm, making him hold himself up. She kept having to smack both his uncles hands away. They kept trying to help him do his exercises. It was hard for them to watch him grunt in discomfort, trying so hard to do the exercise.
So after the stress (put on his uncles) we were off to speech again!! This was a highlight as we saw the coolest machine. We can’t possibly do it justice (no pun intended!), but the purpose of this contraption (and a very expensive contraption at that) is to help train Justus’ eyes to track. So literally somehow it can tell when he is look at the right place on a screen and the game rewards him for it. Pretty amazing stuff! Finally it was back upstairs for more RT and then lunch before round two of his therapy sessions. Of course, since it was spoil you rotten day (Every Friday is spoil you rotten day or Robin day as Justus calls it), we squeezed in a little movie while they gave him his breathing treatment.
Justus then took an unusual nap. As his aunties and uncles, it was our duty to fight to let him have his little power nap and maybe push back his exercises back a little ☺. We won the fight and Justus got a quick power nap! The second his eyes were opened, we wondered if they had us on camera, because they were in the room ready to load him up and take him to his last session for the day (Whew! Cause we were exhausted). During this PT/OT we worked on crawling and walking motions. Then she had him on his back stretching to each side and practicing rolling over (the uncles might have given him a little help). Then some more strengthening of his left side and we ended with a scooter exercise. Uncle Tana supported his back, while Justus sat on top and the therapist guided his feet to scoot forward and backwards. He started to feel the motion and push very slightly on his feet. This ended our day of sessions. We headed upstairs for some dinner and hangout time before bath and lights out ☺. As we write this, we are settling down, reading with him, until he falls asleep. Believe it or not, mom and dad are heading out again with Amaya to sleep in their own bed. Meanwhile, we get to do another shift with Justus. We so excited because Alyse only had to leave one page of notes… of course we think we’re experts ☺! Thank you for your prayers for Justus. He really is a warrior.
So there you have it… please keep praying for Justus as well as the other prayer needs. We updated the#TeamJustus Prayer page on AxisMinistries.org. We’ll try to do a better job of keeping that updated. Please pray for me as I am preaching this weekend, the first time doing so, since all of this with Justus. I’m telling some of the story, so pray that my emotions are where the Lord would want them to be.