I can’t even find the words to explain how grateful our family is to know that you continue to follow this journey with us and the confidence you give us knowing we can always count on you to intercede in prayer for our every need and even those we don’t know we need prayers for. You are truly one of God’s greatest blessings in our lives. Many people have told me that somehow they’ve fallen off the notification list with Caringbridge that they’re not receiving e-mails to tell them that an update has been posted. If you know anyone that that might have happened to please tell them that they can re-sign up on the Caringbridge website. They way you find Joseph’s page is by entering “Thomasjosephstanton” all run together. Know that we treasure every single prayer warrior on our team!!!
I have to tell you I went back to skim over the last update I wrote to see where to pick back up with Joseph’s happenings and was appalled with the typos. I’m so sorry! I’ve been guilty of trying to “voice text” directly to the site from my phone. It’s usually around midnight after a very long day while laying in bed dosing off. As you can tell voice text and auto correct can leave the reader very confused if the writer doesn’t go back and proof read. I’m so sorry; I’ll try to be better. I’m actually on the other side of Houston at a handicapped van repair center because the “kneeler” motor on his van broke. This is the feature where I derived the name “Joseph’s Tricked Out Ride”. When you press the key fob to open the doors on the van literally leans over to the side to decrease the angle of the ramp that we have to try to push my big ol’ strappin’ buck up the ramp! I’ll be here for a long time so brought Joseph’s laptop to work on an update without having to voice text. The only problem is that it was always a disaster trying to cut and paste from Word onto the Caring Bridge website when I used to do that as it messes up the entire format. I’m hoping that problem has been corrected since I last tried to do that. Otherwise I’ll be inundated with editing issues again. So we shall see!
I can hardly wait to share something with you about Joseph’s AWESOME day yesterday. As Katy and I were dressing him he began vocalizing. We were having a tough time keeping up with the documentation for his log that we turn into insurance to help show his progress with speech therapy so he can continue to receive services. As Katy started doing some brain stimulating activities (BSA) with him he was communicating very well with her using eye blinks and even the “big red button” that we attach to his wheelchair during speech therapy and BSA. She had an educational video running when she left the room to get something quickly but he started pushing the button and vocalizing. I think he was trying to say “hey, y’all left me alone in here!” LOL He continued “talking to us” all morning. Kristen, Joseph’s occupational therapist came to do OT with Joseph and talked NON-STOP! She had swimming news for him as one of her girls swims and he’s always interested to here the “scoop”. She told some stories about a mutual acquaintance and that REALLY got his attention so he continued to vocalize non-stop! He was not posturing at all, his heart rate was perfect, he just wanted to express his feelings. He continued to have a fantastic day and was looking forward to 2 old friends that were coming to “workout” with him late that afternoon. I had been telling him since the day before that they were coming. One of them he hadn’t seen for 4 ½ years that were both swim buddies. I had planned to use these young men to help us get him on the tilt table. One of them had come a few times to help us stand Joseph when he was able to do dependent standing with all the therapy angels who came to help us before he was diagnosed with osteoporosis. Joseph has been doing very well acclimating back into standing keeping his blood pressure and heart rate in check. We love the tilt table as it works great because it immobilizes his sacrum and spine so there is a very low fracture risk when he’s strapped to aboard. It was so much fun to have the boys here to hang out with Joseph. With Hernan only here 3 days/week now there is a deficiency of testosterone at the SHOR LOL! The boys started recounting great stories of their swim days, dual meets, championship meets, shenanigans that Joseph was probably the ringleader of too. Joseph continued to be the “talking machine” that he had been all day long. I honestly couldn’t even keep up with it. Joseph did well on the tilt table so I kind of pushed the envelope and accelerated his ascension. We start at 0 with 80 degrees being full extension and full weight-bearing. My goal is to have him at 80 degrees for 1 hour/day. The majority of his days have been filled with storming so we haven’t been able to stand him too often. When he’s doing well, standing becomes the priority. Joseph had been at 80 degrees for about 45 minutes and all of a sudden his heart rate was 149/129 and his HR was 113! The strange thing was that he didn’t LOOK like those were his vitals so I kept him standing. He continued to vocalize like a crazy man so I climbed up on a stool to get eye-to-eye with him, patted him on the chest and said,“what’s a matter buddy?”. He immediately SAID (not just vocalize!) “I don’t know!” I think my heart skipped a few beats and I’m sure my OWN oxygen saturation dropped significantly before I could even look at everyone else and see if they heard what I thought I just heard or if I was dreaming! There were5 of us standing there watching Joseph and one of his friends repeated “I don’t know?” with a question in his voice. Then Lindsey and Katy just laughed and smiled huge as they had heard it too!!! We took Joseph down right at about the hour mark. I leaned over him as he was completely reclined and said, “wow, wasn’t that fun Bubba?” and he immediately said, “NO”. Ha, ha….. The cognitive function Joseph exhibited the entire day was phenomenal! He has not said 3 words together in 4 ¾years!!! He has said 2 words together as we’ve heard him say “I know” and “I love” but he’s not connected 3 words together. It was the most glorious day we’ve had in a VERY, VERY long time! Please join Rob and I as we " Shout for joy to the Lord, with all the earth and worship the Lord with gladness as we come before Him with joyful songs." (adapted fromPsalm 100:1-2)
The next bit of good news is that Joseph will receive the ventilator and we will be doing our training late this afternoon. I have been praying that it is going to solve the storming issues by insuring Joseph is breathing and not causing him to become oxygen deprived thus causing the tachycardia and elevated blood pressure. Please help us pray that the ventilator will be the great answer to our prayers!!!
Lastly, I wanted to thank you for your prayers for Gabrielle and Lexie. I traveled to Austin late Thursday and was able to cheer on Lexie in pre-lims on Friday morning before I made a flying tip to College Station to cheer on Gabrielle in her 2nd Playoff game. The day netted Lexie taking first in pre-lims in the 50-Freestyle breaking the state record but having 2 other competitors within .10 seconds of her time. I knew it was going to be a dogfight on Saturday but also knew Lexie had worked hard and done everything possible in and out of the pool to ensure her best swims. She also placed 2nd in the 100-Freestye and had great performances in both of her relays too. However, I’ve always said pre-lims is just “buying a ticket” to finals. They erase the boards and everyone has 1 chance to place well and when you’re at the top they ALL want YOUR spot! The Lady Mustangs arrived at College Station High School about the same time Rob and I met there too. The girls played an awesome game being up by 9 points immediately as their McDonald’s All-American was having a really difficult time shooting. We were missing our star forward who's out with an ACL injury but the girls were ready for that so they came out fighting. The other team started battling back and never stopped. The best news is that Gabrielle nor any of her teammates got hurt. The bad news is that we came up short 5 points at the buzzer. So Gabrielle's high school career is over. It was cute because at the end of the game the Rice coach who was at game said to Gabrielle, "now you're ours" with a huge smile on her face......and I was so thankful that she was still in one piece! Please pray for Gabrielle's teammate, Charlotte, who will be having surgery on Friday. They know she's torn her ACL however it's possible that there are meniscal tears and/or fractures on top of her femur. Please pray that it's a very simple repair that there is no other damaged tissues or bone. As we learned with Gabrielle the emotional healing can be as difficult as the physical healing so please pray for the LORD to hold Charlotte in the palm of His hand and tend to her every need physically, emotionally and spiritually. Gabrielle traveled back to Austin with me to cheer on her best bud from her toddler days at Good Shepherd Preschool in her final swim as a Kingwood Mustang too. I am so grateful to be able to report that Lex came out on top again in the 50-Freestyle holding on to the State Record she set in pre-lims and brought home a silver medal in the 100-Freestyle! God is sooooo good to our girls! Thank you Jesus for your provisions!!!
Well, I didn't get this posted as early as I thought. I got in from the van repair and a trip to the medical center only to have the respiratory therapist waiting at our front door to do the ventilator training that lasted until almost 9:30 tonight. We didn't even get dinner until after 10 PM. I'll have to share our experiences with the ventilator another time as I am pooped and have to be up and out the door very early in the morning for another doctor's appointment.
My love and thanks to all of Joseph's prayer warriors!