Today I read about the loss of a sweet boy who I have followed online. He showed more courage on any one day than most adults do in a lifetime. I can only imagine the pain this family is feeling to say goodbye. His pain is over and I hope the family can find peace in that he touched so many lives with his warm smile. This family is in my prayers.
I began this post earlier today, amidst chaos of meeting the needs of my 4 kiddos on a busy saturday morning. I was feeling the weight of my worries today for Sammy which often comes and goes on a daily basis. I was originally writing about the hills and valleys of our life lately and how I wish I could stop focusing on the potential threats ahead. I then came back to my post after absorbing the news of this mother's loss. How can I live in fear of future hills ahead for Sam to climb when I see that so many other children's life journeys are cut short so early? God has given us a finite time on this earth but an eternity in Heaven. I really have no business worrying over the hills and valleys ahead for this earthly life. It is more important that we focus on the life thereafter and the steps we are taking now that will lead us all to that happy journey. Every day is precious with the ones we love and it is best to focus on what is in our current path.
This week we began the 30 day halter monitering with hopes of recording Sammy's symptomatic events again for the cardiologist so maybe we can further confirm his understanding of the dysautonomic crash of sorts that leads to his bradycardic and, in turn, hypoxic events. His Dr is concerned less about slowing heart rates but about his heart stopping for these periods, as he has had in the past. At the same time, we have increased his dose of the medicine he takes to counteract this problem and we hope it is the best solution. If not, we need to consider the pacemaker again. I just don't know if he could make it through the open chest surgery with his prior track record and I fear the regressions that always come with procedures.
Sam has been playful and happy this week, although more floppy in his walking. He has been moving much faster in exploring his world. He has taken more advances with his sipping of fluids as well. He still sounds somewhat wet with it, but far less choking behavior and less aversion. I am trying to weigh out more outside exposure to public settings as we did take him with us to the final cheerleading functions for the girls last month and he did well. Our worries primarily surround that bad combination of the risk of illness and the taxing of his system with exhaustion and stress.
In therapy, my main current focus is on his speech development. I have asked his therapist if we should try to increase speech sessions from once a week to at least twice as he is not moving far forward in this area. I fear the prospect of him remaining largely nonverbal if there is something we can do to push it forward. He is so quiet much of the time and then has days where he seems to be really trying to find his voice with the sweet sounds of babbling. The other day, I responded to his call for "mommy, mommy" which is a quite rare use of this word and I was ready to hear what else he had to ask of me..holding him and trying to understand.. he was unable to tell me and began a tantrum, banging his head against the crib in frustration. He signs for many things and we are working on expanding this but it is just not enough right now. He loves the ipad tools but our therapist does not want to try too many different communication avenues away from verbalization as he clearly knows what he wants to say.. just not how to do it. I am sure it will come in time. Meanwhile, he only gets OT on consult and greatly needs more as he still can't stack blocks or color or feed himself with a spoon. His PT has been wonderful for movement but recently has had personal issues and keeps canceling his weekly sessions. So I have to get involved now with that on a more aggressive, advocating level.
In 6 months, Sam will start the IEP process, preparing to exit the early intervention program and enter the school system with VPK-D (developmental PreK). This is something I know little about and need some help navigating.. so that will be my next hill to educating myself about how to best advocate for his needs.
Sam will be 2 years old in one week and I can hardly believe it.. this is such a joyful milestone for us all! Bella will be 7 the day before and I want to celebrate both of these special events but right now a big party does not seem possible. I want Sam to know how loved he is and how proud we are of all he has done this year. I think it is almost too emotional for me to even share how special this 2nd year was as we watched him make such strides in so many areas.
We also have the sleep study/ continuous EEG this next week so, it should be a pretty busy week for us. At least cheerleading has wrapped up for the girls so our schedule will be calmer than it was over the last few months. Spring Break is right around the corner and I look forward to some fun outings as a family.
Probably my greatest prayer for this coming week surrounds the approval of the nursing to continue. That would be the best birthday gift God could give to Sammy. The approval required renewal review is this week and
I can't think of a single more important thing that contributed to Sam's health and wellbeing this year. I just don't know what it would mean for him or frankly, our family, if he loses this coverage. I don't know where I could even begin to fight for this again.. where I would draw the strength. It feels like when that happened last year it was God reaching down and holding Sam in his hands. He knew we were at a breaking point and Sammy was fading fast. And then our prayers were answered.
I am also praying about a special project for Sammy and I that has been on my heart for some time. I am wanting to start up a music therapy foundation, bringing the joy and love of music to touch and help local children with challenges. I think it would be something I could do to give back what has been given to me. I am just working out a plan on how I want to develop it. I pray for guidance on how to begin bringing this dream to reality.
My final prayers are surrounding a friend of mine's family during a difficult time. My friend's husband is undergoing radiation this month and it will be a difficult time as they all go to be with him through this trial. He seems to be doing well after a surgery to remove cancerous tissue in his throat. They have so much faith and I am sure he will persevere through this time swiftly. I hope God helps them to cope and brings to close this scare with a disease that is hitting far too many families. I wish I could understand why cancer and other deadly diseases touch so many people nowadays.. indiscriminate threats that you can't see coming. Thankfully, this family is well supported by our church and community, with an army of prayer-warriers pulling for them.