Little things continue to improve since the placement of the shunt. Benjamin is in a much better mood, smiling more, and is more interactive. He is performing much better in speech with increased swallowing and a crazy increase in tongue movement (not always appropriate for swallowing). Benjamin is back to playing with toys, especially loving my iPad. The iPad is such an amazing tool to use with Benjamin since most toys are too hard for him to activate. On the other hand, I don’t feel like he is quite as active as he was immediately after surgery, which makes me continuously wonder if there is something else that I am missing. Benjamin is just not waving or puckering his lips as much as he did in the hospital. I continue to struggle with what is best for Benjamin medically. Benjamin is on many supplements, all of which have no adverse effects. Creatine, though, is a little more controversial, and has not always shown positive results with MTM kiddos. This week I decided to take Benjamin off the creatine. Creatine does make the cells retain water, and since we really don’t know a lot about his diagnosis and how the cell works, I am afraid that it might just makes him feel heavier. If he could only tell me. Either way, we won’t know until we try. I also discussed another possible drug treatment with his neurologist Wednesday. Mestinon is used for the treatment of Myasthenia Gravis, but has had some positive results with MTM. She is very willing to try it, but KC and I want to do a little more research first. If we do decide to go through with it, we will wait until after the holidays, since Benjamin will have to be readmitted into the hospital for monitoring to start the drug.
Wednesday, Benjamin received his new ride, a stroller style wheelchair. The wheelchair makes him look like such a big boy. He is definitely going to need a bit of an adjustment period, but I think Benjamin will grow to love it. Mom the PT did spend 3 hours making adjustments. I just couldn’t stop until it was perfect. I was so excited to have the chair for Halloween. Unfortunately, the dinosaur-sized mosquitoes kept Benjamin and me inside. His outfit was adorable, but it was way too hot to wear it, so we used it for pictures only. He doesn’t look overly excited in the pictures. Benjamin was supposed to be Sebastian from the Little Mermaid, but his Ariel (Isla) kept losing pieces of her outfit…intentionally. 🙂
The only problem with the chair is transferring it and Benjamin in and out of the car. I have started to contact more resources for possible funding options for a wheelchair lift for the van. Hopefully, it won’t take long. Until then, I do not feel guilty about missing out on workout opportunities. As a friend today watched me transfer Benjamin, his equipment, and then breakdown the wheelchair, she said that was the hardest Crossfit workout she had ever seen.
The past week has been a little difficult for me. I am not exactly sure why, but I have had a few moments of feeling overwhelmed not so much because of Benjamin, but because of trying to juggle time between all three kiddos. It really hit hard when we showed up at dance to take Lennon on Tuesday, and she was the only little girl without a Halloween costume. I had somehow missed the memo. Watching Lennon dance, while she glanced over at the other little girls’ costumes broke my heart and put tears in my eyes. I did make sure that every time she looked over at me, I had the biggest, cheesiest, proudest mom smile ever. Isla on the other hand has her ups and downs, a typical two-year old. She has been fighting with nightmares, which makes her a beast in the morning. I am so afraid that one day when they are much older, they will tell their new therapist that their mother didn’t spend enough time with them. 🙂 For now, I pray that Lennon and Isla will be well rounded and more compassionate because of their childhood. What mom doesn’t get overwhelmed at times?! I have been working hard on pushing my selfish feelings aside and focusing on my wonderful (and interesting) family.
Today was another Mommy Milestone. . . I made it to church for the first time alone with all three kids. Whoo Hoo! I am so glad I did. Church is such a wonderful way to start the week, clear my head, and refocus on my purpose in life. I know God understands when we can’t make it, but I NEED to be there for my well being.
After a rough week, I received a wonderful note today from a high school friend. God must have pushed her to send it, because I really needed it. Occasionally, I have moments where I feel like there is no need to continue Benjamin’s blog, but the input I receive from friends and family is overwhelming. When I was a kid in junior high, I looked over at my mom in the car one day and said, “Mom, I think I might be famous one day.” I just felt like I really had a purpose and that I would connect with people somehow, not necessarily famous. Mom nodded, but did make sure I knew that singing would not be my ticket to fame. I spent many days mad at her for not taking me to the Mickey Mouse Club Auditions. 🙂 Now I know that Benjamin is what connects me to people. My purpose is to share his story, to give as many people as possible the opportunity to be touched by Benjamin, hopefully giving others hope, faith, and sometimes a little laughter. My sister-in-law and brother-in-law shared a story that they heard in Mass today. Mother Teresa had met a family with a child with severe disabilities. When she asked the mother the child’s name, the mother replied, “Professor of Love. Because this child is teaching us the whole time how to love in action.” It was so touching that they had thought of Benjamin. I know that he is that for us, but the thought that Benjamin can do this for others is amazing.