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12/27/2016 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
As many of you know my 14 year-old nephew, Ramon, recently had surgery to install a baclofen pump in to his body. Ramon suffers from chronic spasticity in his legs. His condition has progressed so much that he lost his mobility in the last year. He has gone from using a walker to having to use a wheelchair. In addition to the loss of mobility the spasticity can be very painful. The surgery that Ramon received last Tuesday was pretty invasive. The pump is installed under the skin near the side abdomen area and then connected to his spine. This pump releases baclofen into his body so that his leg muscles can relax.
This journey has been enlightening. When I made my initial prayer request, many people asked if they could help. This initial support was very much appreciated, however I was unable to accept assistance because I was really unsure of what was going to be needed. All I knew is that my mother was going to need support. My wife, Grace, joined Ramon and my mother in Houston for the first two days of after surgery while I finished work in Austin. I joined my mother in Houston on Thursday, and Grace went to Alabama and Tennessee to celebrate Christmas with her family. Now that I have been in the hospital for a handful of days, I now understand what will be needed moving forward.
My mom is the primary caretaker of Ramon and my sister (Ramon's biological mother). My sister has her own physical and mental disabilities that have left my mom as Ramon's adopted mother. This process is both emotionally and physically exhausting. My mom and I have been taking shifts sleeping and staying at the hospital or in the hotel. My mom lives in Harlingen and we don't have family in Houston so we don't have many resources here.
The good news is that the surgery was a success, however there is a long road to recovery for this type of surgery. He will be in the hospital for a minimum of 4 weeks. There is a great team of therapists working with him in rehab. The doctors have given Ramon some physical restrictions. He is not allowed to twist his body, bend down or lift his legs higher than 90 degrees. This means that he needs a lot of assistance dressing, showering and going to the bathroom. Ramon also struggles with anxiety. This causes him to panic and get frustrated throughout the day. This means that he needs 24 hour supervision from someone he trusts like a family member.
Ramon is also learning to use his muscles in their new relaxed state. He is learning to stand and hopefully walk. He has made a lot of progress in one week. He went from not being able to really move his legs after the surgery to being able to lift his legs a couple of inches while he is seated. He can support his weight with his arms and his legs for a bout 25 seconds. He still doesn't have the ability to take a step. Ramon is a hefty teenager so he will need a lot of work to fully learn to support his weight. This also means he usually needs two or three people to help him get into his shower chair.
The last five days have been exhausting but there has been a lot of positive takeaways. Spending Christmas in the hospital is a unique experience. I found myself incredibly grateful to have the nurses and doctors on staff over the holidays. I slept in the hospital room with Ramon on Christmas Eve and woke up with a headache after a rough night's sleep. We had a busy morning taking a shower and going through therapy. When my mom finally arrived she had two bags full of presents, one for Ramon, and one for me. More impressive than the gifts was the message she left from "Santa." It was both a powerful message of encouragement and a faithful reminder of the hope that Jesus brings. As I sat next to her listening to the loving message she had for Ramon. It took all of me not to breakdown in tears. Here I was fighting back screams of frustration and trying not to be a total jerk while I was fighting off my headache. Then my mother comes in, fighting past her own exhaustion, found some last minute treasures and ensured her children were filled with love and the mercy of Jesus Christ.
This moment wasn't an accident, it was 40 years of parenting and a lifetime of faith in the making. The love my mom shared this Christmas is the same love she has been joyfully pouring out to me and my sibling for so many years. There was a Christmas Mass at noon in the hospital that we weren't able to make because Ramon needed some attention at that time. In place of Mass we read the readings for the day. This is the first time I can remember missing Christmas Mass. We still found a way to celebrate the birth of our Lord Jesus Christ. I can say with great certainty that I will not forget Christmas 2016.
As mentioned before my mother works hard to care for to people with disabilities and many medical expenses. Right now the expenses are even more exceptional than usual. To add insult to injury my mom has a counseling private practice, and this has limited her ability to see many of her clients. She is trying to see as many as she can through tele-counseling but she is having difficulty scheduling clients due to Ramon's changing schedule of therapy.
For those of you looking to support my mother and Ramon here is how you can help:
The hotel and parking are expensive. We have a hotel with discounted rates about 20 minutes from the hospital.
We have met with the social worker here at the hospital and she has been helpful but we still can't eliminate all of our costs.
The Ronald McDonald house has been mentioned by some friends but my mother has tried it before and found it to be chore heavy. When I give my mother a break I want her to relax not be a maid.
Food is also very expensive. I am trying to make sure my mom eats healthy meals not just microwaveable food and fast food.
All together these costs are over $100 a day not to mention the income my mother is losing from not being able to see her clients.
As I mentioned we don't have a lot of support here in Houston because it is not home for either of us. Prayers are greatly appreciated!
If you would like to contribute click here copy this link: www.gofundme.com/ramons-return If you would like to sign-up for a prayer-time copy this link: www.caringbridge.org/visit/ramonsreturn/planner