Bad Case of the Mondays

Benjamin’s follow-up appointment at the ENT resulted in a dose of amoxicillin for bilateral ear infections. Poor Benjamin had a weekend of relaxing, suctioning, and CPT. I am sure he wasn’t too disappointed he missed his sister’s dance recital. πŸ™‚

Sunday he was finally starting to look like he felt better, but by Monday morning, it was evident that the left lung had collapsed. This is usually managed at home, and by later on that afternoon he looked fine. That night around 10:30, I started Benjamin’s nighttime ritual. When I thought he was resting comfortably, I sat at the computer to do some work. After a few minutes, I noticed that his breathing was very loud and the vent sounded even louder. When I rolled Benjamin over, I noticed that his chest wall was not moving. The only movement I could see was at his stomach. I began suctioning and after no change, I decided to change the trach. When that didn’t help, I start to get a little panicky and began bagging. There was still no chest rise with the bagging. His sats were dropping but nothing lower than the high 80s, and his color never changed, but it was obvious he wasn’t getting enough oxygen. I called over my next door neighbor to help me listen to his lungs. I couldn’t tell if the trach was placed wrong, if there was a plug… I had no idea what was going on. After about five minutes I took the CPT cup and started working on his back and chest. After about five minutes, his sats began to rise and the chest wall began to move.

At that point, I could not go to sleep. I avoided another close call, but I couldn’t help but sit and think what all I could’ve done better. I finally went to sleep but woke up around 1 AM to turn and suction Benjamin when it all happened again. This time I knew what to do and started CPT and suctioning. A few long minutes later the chest wall began to move…AGAIN. Benjamin, of course, handles these moments much better than I do. Afterwards, Benjamin was clapping and blowing kisses as if to say, “thanks mom!”

The next day I went ahead and took Benjamin into the doctor. His breathing was still a little faster than normal and the ventilator didn’t sound right. The physician decided that something was not reading correctly with the vent so I called the company. They came to the office and switched out ventilators. Benjamin’s breathing rate immediately dropped from 58 to 35.

Benjamin quickly fell asleep on the new vent, and he slept the rest of the afternoon and all night. We are pretty sure that Benjamin had mucous plugs that blocked some of the already floppy airways to the lungs, but we are not sure what exactly was going on with the ventilator.

He continues to be on oxygen, but Benjamin is starting to look much happier. We were able to get out today and have lunch under the trees at the planned location for the new playground. Benjamin will not be sitting on the side too much longer.

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Budget Passed

After a great showing from LACAN and many testimonies from families, the Senate Finance Committee passed the budget with the 125 additional NOW slots. I encourage all families to become more involved in advocacy for your little ones. With a medical diagnosis that can make you feel so helpless, it is wonderful to find something where you feel like you can really make a difference.

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This is an article that was in the Baton Rouge advocate concerning the Senate Finance Committee meeting.

http://theadvocate.com/home/6061624-125/senate-finance-will-hear-from

Senate Finance Committee

Today we woke up extra early to load Benjamin in the van and drive to Baton Rouge to the State Capital. I had been asked to speak by LACAN at the Senate Finance Committee. I nervously agreed, knowing it was time for me to step out of my comfort zone to speak for not only Benjamin, but for all children and adults with disabilities. LACAN asked me to try to memorize my speech, and not read from the paper, but after a week at home alone with the kiddos and no nurse, this wasn’t an option. To make things more interesting, Benjamin decided to have fever and a high heart rate last night that lasted through the night and has continued today.

We arrived early, hoping to speak early, since we had appointments to keep for Benjamin, but as soon as they started calling names, I kept praying I wasn’t next. I was so afraid they would ask me a question about the bill I didn’t know. Believe me, I was ready to defer to someone else. I don’t think I have been this nervous to talk since the high school science fair. πŸ™‚

They called my name, I sat at a table facing 12 Senators, ready to give them a small window into our world. This is what I said (sort of):

Good morning Chairman and Committee Members. My name is Hillary Sirmon, and I am here to ask for your support for the funding of 200 additional NOW slots.

I have a beautiful, bright, and delightful one year old son named Benjamin. Benjamin is diagnosed with Myotubular myopathy, a muscle disease that has a survival rate of 60% past the age of 1 and 10% past the age of 10. He is able to live at home, but not without an extensive supply of medical equipment and nursing. (Multiple pieces of equipment in our home cost more than my college tuition) Though Benjamin lives on a ventilator and has limited movement, he is able to touch hearts and change lives.

“Benjamin is currently covered by private insurance and Medicaid, but there are expenses that can cripple any family financially that are not covered by insurances. Since having Benjamin, I am no longer able to work, and since I made most of the money for our family, these times have been difficult. My daily walk to the mailbox is painful, and gives me great anxiety, wondering whether there is a bill or more paperwork I have to sort through. This is time I should be spending with my son.

Benjamin has been on the NOW waiting list since May 2012. At this time, the waiting period for a waiver exceeds my son’s medical life expectancy. A waiver could provide our family with home and car modifications as well as additional equipment needs that could assist us in taking care of Benjamin. Without appropriate funds, I am afraid that Benjamin, as well as his older sisters, will be negatively affected by the stress that our family must endure concerning financial, mobility, and home limitations.

Before Benjamin came into our lives, I worked as a pediatric physical therapist. I thought I had an idea of what the families I worked with went through, but I was wrong. You can’t quite understand until you walk in our shoes…until you have a year without a full night’s sleep, until you feel like your closest friends are medical professionals, and until you realize every decision you make can literally mean life or death. I am not here to complain, I am here to make changes. I am not looking for pity, I am here to open your eyes and offer a voice for those who may not have one. I tell my family and friends that for me, I wouldn’t change a thing about Benjamin. He has taught me so much and made me who I am today. For him, I would and will do everything I can to make him comfortable, happy, and a participating member of our society. With or without your help, I will make this happen for my son. We are only requesting the benefits of a system that our families have paid into for so many years. I want to spend more time being a mom for my children, instead of constantly fighting for them.

You can help Benjamin, our family, and 10,000 other families across our state by funding 200 additional NOW slots. Thank you for your help in ending the wait.”

I hope I left an impression. I did hear quite a gasp when I mentioned that the waiting list is longer than Benjamin’s life expectancy. This definitely needed to be emphasized.

Unfortunately, we weren’t able to hang around to listen to the other parents. We rushed out to make Benjamin’s appointments, but were stopped by a newspaper reporter for a few questions. I think she was most impressed by the 4 and 3 year old sisters. If she could only have met them. πŸ™‚

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Miracles to Milestones Playground (unofficial name)

It is with great excitement that we are ready to share what we have been working on for months now.

After Benjamin was able to come home from the NICU, and was a little less “fragile,” I started to imagine his future and his place in our family, in our community, and in this world. At some point I imagined Benjamin around three years old, asking me if he could go play with his sisters at the park. (Lennon and Isla LOVE the park.) Of course he can go to the park, but I asked myself, “What can he do there?” Right then, I knew something had to be done. We needed a place, other than home, where Benjamin and his sisters could play together. We are so lucky to have such wonderful places for our children to play here in St. Charles Parish, but I wanted a place where Benjamin could be involved… not just sit on the side and watch.

I was worried how I could convey this vision to others, but luckily, I found a parish and community that were able to see it with me. At one point, a few of us met with a builder to assess the area for the playground. Outside that day was a special education class from a near by school. I stood there with tears in my eyes as some of the higher level physically functioning children were able to maneuver the equipment with help, but there sat a child in a wheelchair watching her classmates. This was a perfect demonstration for our meeting. I couldn’t have asked for better timing, but it broke my heart and I refuse to let Benjamin sit by and have him watch the world happen around him.

We have worked with the parish, and have been given a location for a new handicap accessible playground at the East Bank Bridge Park. So at this time, we are working on the logistics of raising money for the park and will have an account set up soon. For now, updates can be found on “The Playground” tab on the Miracles to Milestones blog. I know that this community will step up as they always do to help us raise the money to have this dream become a reality. πŸ™‚IMG_1300

“Pray, Have Faith, Then Trust”

Saturday, I attended a local Women’s Morning of Prayer and Inspiration led by Lorraine Hess with the theme of “Pray, Have Faith, Then Trust.” We read over verses about Martha and Mary discussing moments in which their faith was tested with the death of their brother Lazarus. Mary was upset with Jesus for not helping Lazarus sooner, but Martha had faith that through God, her brother could live…and he did.

We talked about Mary and Martha, and Lorraine wanted us to take a moment, alone, to see in what ways we are like Mary and in what ways we are like Martha from this verse in the bible. I get very uncomfortable with “work” at conferences. I don’t like to fill out questions about myself. I don’t like to share what I learned. So, when we were asked to spend a few moments reading over the bible verses to see how it can relate to our lives, I was a little less than thrilled. I decided to go sit out in my car alone. My car is really the only place where I am alone, and I feel like I have more “ah-ha” moments there. I sat, reading the verses at least three times, and had almost decided I wasn’t getting anything out of this until… “ah-ha.”

There are three things that I really stress about on a daily basis, one of which is how to make sure that Lennon and Isla become loving, caring, and spiritual adults. When it comes to Benjamin, I have fully put my fears about his future into God’s hands and have FAITH in him like Martha did. I don’t worry about who he will become, what he will do, how he will live, because I have faith that God will take care of him. So…why do I not feel the same way about Lennon and Isla. Yes, Isla and Lennon will be exposed to more social challenges than Benjamin, but at some point I need to have faith that God will take care of them. I worry how we discipline them (is it too much, is it too little), I worry about what they are exposed to, I worry if we are good role models, I worry do we give them enough attention or too much, I just pretty much hope that we don’t do anything to screw them up. πŸ™‚ I know I can’t be the only parent that feels this way. So this is where I am like Mary. It was almost like someone slapped me in the face. Why haven’t I realized this sooner?! We must “Pray, Have Faith, Then Trust.”

We also read a verse from Luke 10:38-42.
As they continued their journey he entered a village where a woman whose name was Martha welcomed him. She had a sister named Mary who sat beside the Lord at his feet listening to him speak. Martha, burdened with much serving, came to him and said, “Lord, do you not care that my sister has left me by myself to do the serving? Tell her to help me.” The Lord said to her in reply,”Martha, Martha, you are anxious and worried about many things. There is need of only one thing. Mary has chosen the better part and it will not be taken from her.”

These two exerts from the bible helped me realize that I have been too busy worrying and “serving” my children to really enjoy who they are now and who they are becoming. We as parents work so hard to make our children happy and try to do the right things that we don’t take a moment to step back and enjoy watching them grow with God. We must remember that God has them…all we can do is lead by example. We must “Pray, Have Faith, Then Trust.”

The following picture was one of my Mother’s Day gifts. This was by far the best Mother’s Day yet.

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Benjamin the Advocate

Benjamin recovered wonderfully from his surgeries. He has been healthy, happy, and turning into a true toddler. He likes to shake his head no, and he throws down any toy you give him so you will have to pick it back up. (All with a big smile on his face) He is consistently swallowing with facilitation now, but it is still not strong enough to clear all the secretions. He is continuing to improve, and it was definitely the right choice to have his tonsils removed. (Sigh of relief)

I continue with the same minor battles with insurance, vendors, and pharmacies, but overall, things have been great. I have considered getting Benjamin his own phone, and I have realized that if companies will do what they are supposed to do, then our job as parents would be so much easier. One battle at a time. πŸ™‚

Lennon and Isla have been pretty amazing too. I woke up last week to the sound of the suction machine, just to run in the room to find Isla suctioning Benjamin’s “sneezes.” Lennon frequently does Benjamin’s arm and leg exercises. They make sure to include him in their play, and even set up a third tent with a bed for a sleepover in the living room. I have been blessed with the most amazing kiddos. πŸ™‚

Next week is Bridgette’s last week (nurse M-F). She will be impossible to replace, and I am very sad to see her go. I really don’t think Benjamin would be doing as well as he is if it wasn’t for Bridgette. We haven’t had any luck finding new nurses. We had another nurse stop by for a day, but she made it pretty clear she wasn’t returning. Really?! Oh and she nonchalantly made a comment about “if someone does on my watch, then it was their time to go.” Seriously?! I swear, sometimes I feel like we are in a reality show, but no one jumped out with a camera crew.

Wednesday May 1st, Benjamin, nurse Bridgette, and I attended the Disability Rights Rally in Baton Rouge at the state capital. We drove to Baton Rouge in the rain and drove home in the rain, but the heavens held an umbrella over the hundreds of yellow t-shirts that day. And thank goodness, because, Bridgette and I had to carry Benjamin and his chair up the steps of the capital (the middle levels are not accessible to wheelchairs), and I didn’t want to repeat this rushed and in the rain. It was a risk worth taking.

This was an amazing experience. It was definitely hard to hold back the tears as I listened to the inspirational young adults living with disabilities. They were truly “living.” Our local LACAN asked if I would approach a representative. (Not our local representative) This is definitely out of my comfort zone, but after seeing how these young adults were able to step out of their comfort zones, I took a deep breath and agreed.

To approach a representative, you write a note, send it by a messenger, and the representative decides whether or not they come to talk. So, you stand at the door, wait to approach someone that you don’t know, not sure of what they look like (thank goodness for Google Images), and pray you say the right thing. Thankfully, I stood next to a mom with many years of experience and a bit of an aggressive bone in her body. πŸ™‚
After twenty minutes of waiting, our window of visiting with representatives was starting to close. I happened to spot who I thought I was looking for, and anxiously waited for him to come out. Waiting… waiting… well he didn’t come out so the mom next to me walked right onto the floor, spotted him, and scooted me on in to approach him. We wheeled Benjamin on up, introduced them, and quickly discussed the need for more wavers for our kiddos. Who knows if we were able to make a difference, but all we can do is try. If Benjamin’s sweet face can’t persuade you, then nothing will. πŸ™‚

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