I'm so sorry it's been so VERY long since I've been able to write. The conclusion to Gabrielle's senior year has been overwhelming with commitments for special events and getting her ready to start college in just a few weeks. I actually had an update started that was saved as a draft but it's been so long I guess Caring Bridge purged it. I have received so many sweet heartwarming texts and e-mails from so many of you concerned about Joseph and our family because you haven't seen an update. Many I haven't even been able to respond too and I'm so sorry about that. I have been brought to tears many times reading the sweet messages but just still haven't been able to dedicate the time needed to post an update. Be assured this mama has NOT lost hope, it was the "fighting spirit" my mama instilled in all of her girls that will NEVER allow me to throw in the towel. I'm not sure who pulls more teeth on a daily basis, Rob or I, sometimes. I battle on every front you can imagine trying to bring my prince the best of everything my own brain can imagine to help him progress. Yes, some of the things I battle daily get very old but there's no one else to do the dirty work so it falls on me. THOSE are parts of my job I wish I could escape from.
Today, June 3rd, is the 5th anniversary of his accident. He's actually suffered now for a half of a decade. While it is beyond painful to even let my mind go there, I do still give thanks for his life that was spared 5 long years ago. It's not much of a life for Joseph but we cherish every day that we have him and pray that he is nourished by the love that surrounds him. My prince continues to live on the same roller coaster he's been on for the past 5 years but the storming episodes are come closer together and last longer. The ventilator hasn't helped the storming at all. He's had seizures while on the ventilator but strangely enough the number he's had the last 2 months have been great. He went from having 6-8 to 2&3 the last 2 months. The only thing that has really changed is that we took him off of cranberry tablets (for UTI prevention) and changed his formula to one that was created for patients with SIADH (Syndrome of Inappropriate Anti diuretic Hormone). We changed the formula thinking that was going to cure his GI upset that we've had enormous problems with and had to get 2 doctor's (GI and endocrinologist) involved to approve the change. Every single thing we do for my prince is so complicated because he can't help us with any degree of certainty with communications for something as serious as medical issues. The new formula worked for a very short time or it wasn't the change in formula at all that caused his GI tract to settle down for a couple of weeks. Over the last several weeks he has displayed horrific responses when getting most all of his peg feedings, medication administrations that are also done by peg tube, and sometimes when drawing out the residuals. I was able to get in touch with Joseph's awesome GI doctor in the medical center. He made the mistake of giving me his e-mail address so I e-mailed him over the weekend and we exchanged several e-mails even though he was out of the country. He was so incredibly kind that he contacted his nurse and told him to make a place on the schedule for Joseph next week when he's back. He doesn't even have clinic hours to offer but he is going to come over from the hospital to see Joseph. We are blessed! Rob thinks he might have IBS (irritable bowel syndrome) for which there aren't a lot of good solutions that he's been able to find. We're hoping Dr. Quigley has some good ideas.
On a good note, we began moving Joseph back to the PT table for occupational and physical therapy several weeks ago. We hadn't done that in a year due to the fractures in his back and the potential for more fractures with the osteoporosis. It'll have been a year in July some time since he had the bone scan. I'm anxious to have another one or some other test/image done to see if there has been any improvement in his bone status. Not sure if the doctor will allow us to do that or not.
We've been able to get Joseph up on the new tilt table a 2-3 times a week. The only thing that prevents us from getting him standing is all the storming he's been suffering. We tilt him up to 80 degrees then it's full weight bearing. He needs a LOT more standing than we can give him but we can only do it when he's stable and with him storming so much we just can't do it. He used to stand 5-6 times for an hour each stand every single week with our beloved therapy angels who made if fun for ALL of us. It kills me that he's not even getting that therapy. We've literally lost almost all of the incredible therapies we provided outside of the professional home health therapists over the past year. We used to have crawling therapy, mandarin language lessons, back extension records every time the PT came, push-up records, fort building therapy, pet therapy, trigonometry, art therapy, pool therapy, smelling therapy to stimulate his sense of smell, music therapy and the list could go on and on. The biggest problem now is that Hernan is literally the only staff member still here that has assisted with all of those physical feats and he's only here on a limited basis. I want to start trying to get Joseph back into all of these things again soon.
My beloved father-in-law called last night and told Rob that I REALLY needed to post an update or we might loose some prayer warriors. Well I NEVER want that to happen so a CaringBridge update has been moved to the very top of the "To-Do" list TODAY! I'm sad to realize it's been more than 3 months since you've gotten an update from me. Thankfully Rob wrote on Easter and I honestly started updates twice in the interim but they must have gotten purged because I didn't sign on to CB in so long. All I can say is "I'm sorry." We were inundated with Gabrielle's senior events this spring. I was in tears months before trying to figure out how on earth we were going to pull off her National Charity League Senior Salute that was more than an hour away from home because Gabrielle insisted that Joseph be there with her to celebrate her 6 years of service to the organization. He even worked at one of her philanthropies a couple of times by himself and was as proud as a peacock for all the neat things he got to do for the less fortunate. We were blessed to have Hernan help us pull off this feat not just by being Gabrielle's special guest and 2nd brother but by his coming to help us physically make it happen. Even after all these years he's the only one that can do every single thing Joseph needs while reading his every move and knowing what he needs. He's thrown his body to the floor before when Joseph slid out of his wheelchair to keep him from hitting the floor. We could not have had Joseph at the event if it wasn't for Hernan's efforts so we are overwhelmingly appreciative. Besides Madeleine and Audrea, my sister, Aunt Sheri and her husband Jim flew in for it in addition to our beloved Father T.J. making the trek from downtown and the Rohn family drove in from Ft. Worth. Gabrielle looked beautiful in her gown and her sisters played make-up artist to dust off the "Jeff" and renew the gorgeous girl underneath all the rough edges. When she was little she really wanted to be a boy so she tucked her ponytail underneath her baseball cap and told everyone her name was "Jeff" LOL!. The very next weekend was prom so we only had a few days to pull all of those plans together but it was a very special event too thanks to good friends who went to a lot of work to get all of the details worked out. The next senior event that occupied our lives was a "Tailgate" graduation party for Gabrielle and her best friend since preschool, Lexie, who you'll remember is the swimming star and will swim at Texas A&M next year. Lexie's mom, Anita, helped put on quite a shindig as they say in Texas. After that it was Gabrielle's actual graduation with her sisters flying in again. Then 11 days after that I took Gabrielle on her senior trip to Australia. Rob and I have always taken the graduating senior on a special trip just the 3 of us. Rob and I have been so sad for the past 2 years as time grew closer and closer realizing Joseph was not going to recover and that it was going to be impossible to continue the tradition that we have with the others. Then at the beginning of April he came to me and said "you know Gabrielle has made tremendous sacrifices for the past almost 5 years because we can't do for her like we have the other kids. I worry that she'll never forgive us if we don't take her on a senior trip." He went on to say that he was going to take vacation and stay home to take care of Joseph and wanted me to take her on a trip. So, we told her that it had to be an English speaking country since I am not fluent in any other language and I wanted to make sure we were safe traveling alone. She's always wanted to go to Australia so it was a perfect destination. The only problem was that I had absolutely NO TIME to plan ANY of it. I drive most people crazy because I plan our entire trips to the 15 minute mark every day that we're gone. Let alone was I not able to do that I had no idea what we were going to do once we got there. Thankfully I have a few Facebook friends who live there, 2 of them for decades who gave me some generalities like what cities to go to. Rob cashed in a years worth of mileage points from a charge card to buy plane tickets and booked hotels with a time share that we've not been able to use for the past 5 years. We chose Sydney and Melbourne and just visited with the concierge once we arrived to make plans. In the end we had a delightful time exploring a country we'd never visited. I got to see an old junior high friend I hadn't seen in 38 years who moved to Sydney after graduating college and marrying an Aussie. The really cool part was that she had a daughter exactly Gabrielle's age that had just graduated too. They picked us up at the airport in Sydney, took us sight seeing and to their beautiful home on the beach. We met her husband and son too. Before we left they insisted we try Vegemite so we video taped the adventure and sent it home. We also went to Melbourne to see the sites and got together with old swim friends who went back to their home of Australia about 15-16 years ago. The daughter, Ellen, was one of Audrea's best friends in elementary school but moved back to Australia when she was 8 years old. She is all grown up, was incredibly helpful with everything about our trip and just finished law school! We met up with she and her mother whom was a dear friend of mine when Joseph was a toddler and Gabrielle was a newborn baby. She used to take care of ME at the swim meets when I had Madeleine and Audrea in the water competing and was trying to corral Joseph and nurse Gabrielle in a corner of the hot natatorium. Ellen took us to a fabulous little restaurant we would have never heard of on our own. Gabrielle nor I recognized a single thing on the menu so I politely asked Ellen if she would just order for us and everything was spectacular! We had a great time in Melbourne and surrounding areas as we went to the Yarra Valley to check out some of the vineyards of Australia that get distroyed by kangaroos sometimes believe it or not! We fell in love with the Healsville Sanctuary where we got to see all of the native Australian animals in their natural habitat. It was actually a little unnerving because the animals were not really locked up. We finally asked the staff if it was safe and they explained how it was even though the fences and ropes were very, very low or non-existent Gabrielle got to stand beneath a koala sleeping in a tree about 18 inches above her head. We also did a 13 hour tour of the Great Ocean Road that was breathtaking and took in an Australian football league game that Gabrielle really enjoyed of course! We visited the Twelve Apostles a couple of hours outside of Melbourne on the Southern Ocean. It is a collection of phenomenal limestone stacks
off the shore of the Port Campbell National Park
, by the Great Ocean Road
, The sights were truly breathtaking and I couldn't help but to think of Joseph and the fact that he'll probably never get to see them in person. It made me really sad and it was hard to hide from Gabrielle. The next morning I received a text from Rob with a video of a Joseph in a beach-style wheelchair riding the waves in the Gulf of Mexico on Galveston Island about an hour from our home. Gabrielle was still asleep so I hid out in the bathroom and just bawled watching Hernan and Rob take Joseph on a VERY fun beach trip where he even got to get in the water and ride the waves!!! It has been Rob's dream for many years to take Joseph back to the beach. I have to give a HUGE shout out to Stewart Beach that gives free admission to handicapped patients and lends them their amazing sea-going "beach buggy wheelchairs". I'm hoping I can download the video for everyone to see. I haven't figured it out yet but will certainly notify you if i can figure it out. I know God timed that all out perfectly to take away my sorrow and I was so grateful!
Rob took Joseph to see Dr. Quigley while we were gone and he agreed with Rob's thought that Joseph has IBS (irritable bowel syndrome). So far the only treatment that he's prescribed is over the counter Imodium along with the Carafate that he was already taking exactly 1 hour before he gets fed. So far it's working very well. Praise be to God!
We have had some staffing changes at the SHOR I need to update you on. Hernan has been an angel to stay to get our first new team member trained to a certain degree and had planned to be gone the week I was gone but work the one last day which was the day before I returned since Rob had to return to work. I had begun planning his going away party but was blindsighted to receive a letter of resignation on my desk 3 days before I left giving only a 2 week notice. I only got a total of 12 hours sleep in 4 days that week trying to get 3 weeks worth of work done so I could take Gabrielle on her trip so to add this stress almost pushed me over the edge. No one else does the tasks that I do so I had to do 3 weeks worth of work in advance when I don't have any spare time in a day to begin with. To have a team member give me 3 days notice to advertise, interview, hire and train all while I was trying to make some semblance of a trip for Gabrielle was very upsetting to say the least as she was gone when I came back. Even with 2 months notice we can't find and properly train a team member to safely care for Joseph. The worst part was that we had put Joseph through a surgery to put P.E. tubes back in his ears so could begin going to HBO diving again just a few weeks earlier. This gave us no time to find another staff member that we could send to the training in San Antonio that's only offered once a month so Joseph could continue diving. It was just extremely inconsiderate and shocking because she'd been such a good team member. Thankfully in my very frantic state Rob came to my rescue. There had been a young woman who had just graduated from Texas A&M who wasn't sure what she wanted to do that came in to his office for an interview. Someone else with a lot of experience was hired but he was impressed with the young woman so gave me her resume. I called her to see if she'd be interested. She came and spent some time with us at the SHOR and thought she'd like to join the team. However told me she couldn't commit to a year of service which is the minimum service I ask of all of our team members . It takes us so long to properly train caregivers so that we can safely leave Joseph alone with them that we ask that they commit to us for at least a year. It's very stressful trying to do all of our jobs AND train on very little sleep so we feel like it's only fair. The young woman who only gave a 2 week notice didn't stay a year so I made sure to reiterate that point. I was thankful that this young woman was honest enough to tell me that she may be going to graduate school in January but that she could commit at least 6 months to the SHOR. Her name is Sarah and she has turned out to be absolutely delightful with a very upbeat, positive attitude, smile on her face at all times, takes instruction VERY well and anxious to learn. We couldn't feel more blessed! Speaking of "blessed", Hernan also came to our rescue by offering to stay on until we got the new person trained too. That was the only reason I could even sleep while in Australia with Gabrielle. The young man that is going to take Hernan's place was one of Joseph's good friends from high school football that has been one of his most loyal friends as a therapy angel and just coming to visit when he's been home from college. His name is Matt and one time he drove in all the way from Virginia to see Joseph even BEFORE he went home!!! He's a great young man! Joseph swam in high school with his older brother too. Matt is doing a great job and always has a cheerful spirit even during his sometimes 11 hour shifts! He was supposed to be our muscle man that we need on the day shift when we have to dress Joseph and reposition him in his wheelchair but he hurt his back when he was hit by a car walking across the street at school in Virginia right before he came home. So please pray for Matt and his back to be completely healed. Matt started a really cool activity with Joseph yesterday where he had him set goals for the week and select a memory verse to focus on. Joseph demonstrated great cognitive function in making very clear choices which thrilled all of us. Matt read him a short story too about a man who always thought positively and was in the end shot but survived. The story had a very sweet ending and Matt discovered that Joseph had tears running down his cheek. I know Matt and Sarah will be great blessings for Joseph and we couldn't be more thankful they've joined our team.
Before I fall asleep at the keyboard I better sign off before this update gets pushed aside as a draft too. We couldn't be more grateful that you continue to walk this journey with us. You are a tremendous blessing to Joseph and our entire family. I give thanks for you every day and ask the LORD to return the blessings to you and your families 100-fold!
Blessings of abundance to you and your always,