Kissy Faces

We have had a great week here at the Sirmons. Benjamin continues to perfect his Pat-a-Cake, and he is officially making kissy faces without any prompting. He is just so happy and loves the attention. 🙂

I continue to work on getting our van altered to accommodate Benjamin’s wheelchair. We had a small set back today, but hopefully soon the plan will be put into action. I don’t want to jinx it, so once it is completed, I will give the details. Like I said previously, I have met some wonderful, caring, and giving people since having Benjamin.

Well, we are all decorated and ready for Christmas here. I know this will be our best Christmas yet.

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THANKSgiving

Today and everyday, we have so much to be thankful for. Faith, family, and friends top my list, but at this moment, I am so thankful to be able to watch my three kiddos grow to be bright, happy, and compassionate individuals. They are all so different, but so wonderful.

I am thankful for Benjamin’s continued improvement. I owe his improvements to our faith, family, and friends, but also to physicians, nurses, therapists, research, technology, and an unbelievable community of mom’s and dad’s going through a similar journey.

Milestone of the week: Benjamin has started assisting with patty-cake. As soon as you start singing, he starts clapping (a modified clapping, usually hitting the vent circuit), and then moves his hands together back and forth to mimic the rolling. This is absolutely adorable, and he gets the biggest smile on his face. He has also started kissing again. He needs a tiny bit of help at times at his chin, but we are almost there.

K.C. And I are so thankful for our blessed life and all the people in it.

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Humor In A Difficult Situation

Today, I woke up early to travel to New Orleans to see one of my kiddos for work. With Benjamin’s schedule, seeing the three kids I kept through Early Steps is not always easy, but I love working with them and their families, so I do my best. I was approaching Causeway exit (past the area where you are supposed to exit), and I received a frantic call from Mom stating that something was wrong with Benjamin and his vent. I calmly asked Mom to put Benjamin’s nurse on the phone and her only reply was, “Come home now!” I am not a very aggressive driver, but I managed to cross five lanes of traffic with less than 20 feet of forward progression. I turned on the flashers, and started waving my arms. In less than 20 minutes with 8:30 traffic, I made it home. Not fully knowing what to expect, I was relieved to drive up without an ambulance in my driveway. By the time I made it into Benjamin’s room, he looked fantastic, and was smiling. Mom and the nurse, on the other hand, were not.

Apparently, a routine suctioning must have moved a plug. The vent tried to push through the plug, but then stopped pumping air when the pressure reached a higher level. After multiple suction attempts and bagging that did not help his chest rise, his nurse told mom to grab the new trach to change it. While getting the trach, Benjamin started turning blue and became lethargic. Our nurse immediately started mouth to mouth with successful chest rise. This must have moved the plug further along to where Benjamin’s nurse was able to suction it out. With the help of a little oxygen, Benjamin was then able to recover.

As the day went on, Benjamin continued to look great. Later in the afternoon, one of his lungs sounded pretty junky, so we took him in just to be checked out and we left with a good report.

Tonight, Benjamin thought he might want to have a repeat performance. This time, after about fifteen minutes of suctioning and bagging, I was able to suction enough to clear his airways. His lips started to turn blue only for a second, and his sats never dropped too low. All the secretions were sitting right below the trach, so a trach change would not have been helpful. All I can guess is that since Benjamin is starting to swallow more and aspirate less, his secretions in his trach are thicker with less saliva. Positive thoughts!

I have thought a lot about today and what happened, how we handled it, what could we do better, and can I ever get more than five minutes away from Benjamin? It is weird how numb you can get to difficult situations. Don’t get me wrong, in situations like this, I feel sick, nervous, sad, mad, and the list goes on, but these feelings must be put aside to prepare yourself for the next “incident.” While most parents would be sitting in the ER after their child had a “blue episode,” I was on my way to the grocery store to plan for dinner. A friend of mine who also has a child with special needs, said she went home to take a shower after her child had a similar incident in the hospital. It is not that we love our children any less. On the contrary, we love them so much that we have to pull ourselves back together to be ready to handle the next hurdle. God made us all strong women (and men), who can have a moment for ourselves, but then we are able to move on.

On a great note, Benjamin did really well in therapy Monday. After weaning down on the creatine, Friday we completely stop giving it to Benjamin. Since then, it seems that he has started to move more. Since Benjamin’s diagnosis is pretty rare, most things we do for Benjamin are trial-and-error. We also stopped the levocarnatine to see if that is what is making Benjamin a little smelly. In PT Monday, Benjamin grasped a ring on his own and started to bring it up towards his mouth. whoohooo! He would use his little fingers to scrape the floor, trying to find the ring when he dropped it since he can’t move his head to find it. We have also been suspending his arm and leg in an arch made by his OT using ace bandages and PVC pipe to help remove some of the pull from gravity. In sidelying, Benjamin was able to bring his knee towards his chest bending his hip 90 degrees. He is able to play using both hands together, and he is able to activate more toys while the arm is suspended. Benjamin is looking like his old self again.

This afternoon, while waiting on Lennon, I heard a comment that I had heard a hundred times before, but this time it sounded completely different to me. A woman was insinuating to a man that he would prefer his pregnant wife.to have a boy instead of a girl. He stated “no, I just want a healthy baby.” This reminded me of a comment I read written by a mom of a kid with special needs. She stated that for her son, she wished he would have been healthy, but for her, she wouldn’t change a thing. She loved him just the way he was, and he made her who she was today. I completely understand. I feel blessed to have been given such an amazing child. I always wanted a boy, and I feel so lucky to have such an awesome “un-healthy” little boy. He has taught me so much, and has made me appreciate not only every minute I have with him, but also every minute I have with Lennon and Isla. Benjamin has opened my eyes to our world and my faith. For this, I owe him my life, not the wishes that he was someone else. Even after everything Benjamin has been through, he always ends with a smile. You just can’t say that for all children. 🙂
This sums up my day, puts things into perspective, and is a much more light hearted way to end the day…On my way to the grocery today, I stopped to get Benjamin’s nurse a small birthday present. The girl wrapping the gift asked if it was for Christmas. I told her no then mumbled to a friend, “Do you think they have ‘Thank you for saving my child’ paper.” I might need to invest in that. 🙂 Every time you are able to find some humor in a difficult situation, you win.

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Professor of Love

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.

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