Two For The Price Of One

What happens when you over plan for a trip? … You miss hearing the alarm, wake up 45 minutes late, and turn a relaxing planned out morning to a morning of rushing, running, and no coffee. We walked up to the desk right on time, and I glanced down to my precious angel in his batman pj’s covered in morning slobber and drool. Oh well, we made it. 🙂

They took us back around 6:30, and surgery started at 7:30. Watching them roll him away never gets easier, it actually gets harder. Benjamin, on the other hand, was just fine. He is so trusting and comfortable around others. The doctors said when they brought him back, Benjamin was waving and mouthing “dada.”

At 8:30, the orchiopexy was finished and the first physician came to tell us everything went as planned. (Small sigh of relief) Around 9:30, the tonsillectomy was finished, and they brought us back to recovery. (Big sigh of relief) Both surgeries went well, with no major surprises. Benjamin was a little upset, whimpering quietly, but after a dose of pain meds, he drifted back to sleep. Both physicians agreed that if we were comfortable with Benjamin’s recovery, we could take him home. Around 11:30, we loaded him up and headed home. Benjamin spent his day napping on and off and playing with some of his new toys he received in a gift basket yesterday. (His cousin sent him a gift basket full of various types and sizes of balls. She says it was only coincidental, but it was humorous how very appropriate it was for the surgery.) 🙂

Before today, I was pretty comfortable with Benjamin having these two surgeries, or so I thought. I must have been a little more worried, because when we arrived home, I crawled in the bed with Benjamin and fell asleep. (I rarely take naps) It’s amazing how when you put your faith in God, your mind can focus on what is important (Benjamin), allowing me not to be weighed down by worries. I know I couldn’t get through it without Him!

Philippians 4:6-7
“Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.”

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“NO” Cavities

Yesterday was Benjamin’s first dentist appointment. I had already rescheduled the first appointment so when the secretary mentioned 9 am, I gritted my teeth and agreed.

At 8:45, we drove up, pulled in, stared at the second floor entrance, and prayed there was a hidden elevator somewhere. I ran inside, inquired about the location of the elevator, and realized a new game plan had to be made. Luckily, Benjamin is light and not too difficult to carry, so we loaded up our arms with baby, vent, suction, go bag, and purse.

Benjamin wasn’t too crazy about being held in the office. Making sure Benjamin is comfortable while being held can be difficult. It takes some careful juggling to manage Benjamin’s floppy head and limbs with the vent and trach. (But I do enjoy every minute of it) As soon as we walked to the back and placed Benjamin on the table, a huge smile emerged and the flirting began. While I talked to the dentist, Benjamin waved, blew kisses, played peek-a-boo, and smiled to the dental hygienist. By the time we finished talking, his teeth were all clean without a bit of fussing. The dentist thought his teeth looked great. She said we should expect some delays in the teeth emerging, but so far so good. 🙂

Last week we had another huge milestone…Benjamin’s first spoken word. In speech last week, his therapist decided to try a Popsicle. First she let him touch the Popsicle, and he quickly let go. Tooo Cold. She then brought the Popsicle to his mouth, and Benjamin immediately shook his head and in a raspy little whisper said “NO.” He repeated this every time she brought the Popsicle to his mouth, but kept signing “more” to try to hold the Popsicle. Today we returned to speech, he said no again for us, but eventually enjoyed the Popsicle managing his secretions pretty well. We have yet to suction purple out of his trach, so hopefully his swallowing was relatively effective.

From the desk of Benjamin’s personal assistant, we did get the ok from our insurance for four trachs a month. This might be the easiest resolved problem we have had. It’s about time.

Thursday, Benjamin has his surgery, and we should be there around 23 hours. I expect a quick recovery. I am trying not to get my hopes up, but I pray this will help Benjamin’s swallowing and vocalizing. Pray, Pray, Pray!!!

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God Is The Reason

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In 2002, I started working at a pediatric clinic in college. In these eleven years, I have worked with so many unbelievably wonderful kids, and I have also heard comments, noticed looks, and listened to experiences from parents of insensitive people. Knowing what a blessing all these kiddos have been to not only their families, but also to me, makes it very hard for me to understand what prompts people to be so mean. Most times, I truly believe that people don’t intend to say evil things, but I just don’t think they know how to react or treat someone that may be different from what they are comfortable with.

We get our share of looks, smiles that scream “uncomfortable!,” and “poor baby,” but even after eleven years of stories, today tops the list. I was pushing Benjamin out of the elevator today, when a women stopped and said, “Is THAT your baby?!” Thinking she had seen him somewhere or knew someone who knew us, I responded with a smile, “yes he is.” As I walked away from the elevator, the woman continued with, “You must be pretty pissed off at God for this.”

“No, not at all,” is all I could reply. Angry, shocked, and with my heart breaking, I took a few steps away from where she was, looked at Benjamin’s nurse, and burst into tears. (I rarely cry for sadness, but anger makes me cry like a baby.) The woman apparently stood at the elevator and made no comments. I stood there crying in Bridgette’s arms with the feeling of wanting to punch the woman. (Not a feeling I am very comfortable with.)

After calming down, I am still in awe of how hateful someone could be. Hate God? How could I?! God is the reason I was blessed with Benjamin, Lennon, Isla, and KC. God is the reason I am able to spend everyday with Benjamin. God is the reason I am not angry. God is the reason I love my life. God is the reason I am able find silver linings, and God is the reason I know we will be just fine. Most important for her, God is the reason I didn’t hit her. 🙂

On my way home, all I could do is think of what I should have said. (Some of it was not very nice.) I now know that probably nothing I could have said would have had a positive impact on her life. She didn’t seem ready to listen at how much I thank God for what he has given us. All I could do is pray for her. I can’t imagine how sad and bitter she must be. I truly feel bad for those who don’t open their hearts, and let God take control. The phrase that kept ringing in my head was, “forgive them, for they know not what they do.”

My sister-in-law sent the daily meditation she had for today which is included below. You can’t tell me God doesn’t have a plan. This was written for me to see. 🙂
Today’s picture is of Benjamin’s first time painting. God is who gives me that smile.

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“The Lucky One”

It was another busy weekend for the Sirmons. In 2009, I took Lennon to French Quarter Fest for her first time. In 2010, I made a special trip with just Isla for her first FQF. As the tradition continued, Friday, Benjamin was taken on his own to FQF. It has become a tradition, a right if passage, to take each child alone to the festival after their birth. I am sure it means so much more to me than it does to them, but in true New Orleans fashion, I want my children to be “baptized” by the sounds of jazz, horns, and a community that can’t be replicated anywhere else. To no surprise, Benjamin loved the music. Even though he fought the fussiness of fatigue and sunscreen, he paused to clap with the rest of the crowds on cue.

Saturday, we did leave Benjamin for a bit so we could spend some special time with the girls. It is so weird not having him with me, but Lennon and Isla need a little one on one time every once in a while. I am also not quite ready yet to take Benjamin in a boat. I have ran through emergency situations over water in my head, but I am just not quite ready for that. It was such a beautiful day, and apparently, Benjamin had lots of snuggle time with his nurse.

Tonight, I took Benjamin, Lennon, and Isla to a local pageant to watch a close friend of ours. (Way to go Anna!! We are so proud!!) I am not sure why I was so surprised, but Benjamin smiled so big every time a girl walked out in a pretty dress. Our children LOVE attention, and the three of them demanded it. Lennon kindly notifies one of the women in charge that she would be in the pageant next year. We are in trouble. 🙂

Benjamin has been able to have more life experiences than most one year olds. Maybe I am crazy, maybe I am naive, or maybe I am full of faith, but I don’t live in fear for Benjamin. I am here to teach him, to love him, and to have him teach others to love. This can only happen by having him meet others, and having others meet him.

This past week, a young girl passed away from battling cancer for many years. Her friend, Jordan, wrote a beautiful song in her honor called “The Lucky One.” I try to teach Lennon and Isla not to fear death, and I think this song puts all those feelings into words. Jordan’s lyrics include “‘Cause I know your up there away from home, wrapped up in our Father’s arms, smiling down with joy in your eyes, I bet your up there taking the big Man’s hand, and strolling through the Promise Land, so live it up…, go have you some fun, because to me you are the Lucky One.”

Yes, most people may think we are crazy for bringing Benjamin out as much as we do, but keeping him locked inside is, in my opinion, selfish. When I look at him, all I see is “The Lucky One.”

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The Busy Life of Benjamin

Easter is a very busy time of year for our family, and the kids stayed with us for every festivity. From a Spring Crawfish Boil, Sirmon Family Easter, Easter egg hunting, birthday party, and an Easter Day full of activities including a beautiful day at the Horse Races, Benjamin, Lennon, and Isla had such an eventful and fun weekend. The kids had so much fun, especially seeing the horses, but maybe too much excitement led up to last week. (This was the first time we had to camp out at the hostess stand so we could charge Benjamin’s batteries)

Benjamin was a little under the weather last week, but after bloodwork, urine analysis, respiratory swabs, and a CT Scan, he was diagnosed with tracheitis and given antibiotics. The trach we put in Monday was one I had to clean since we are only receiving one a month now. This illness may help us get a few more. On a positive note, Benjamin’s CT Scan was much improved from December. His continued progress is a sign of that.

I was extremely worried though when he started to get sick since his left eye was starting to turn out on some, and this hasn’t happened since the shunt placement. This isn’t happening as often now, so hopefully it was just from fatigue from being sick. It was mentioned that we should monitor for possible seizures, but I just don’t feel like that is the cause.

I know taking Benjamin out puts him at more risk for illness, but I refuse to leave him at home. He is a part of our family, and will participate in activities with us…within reason. His face just lights up every time we transfer him into his wheelchair. He likes to go just like his momma.

This week we received a stander to try with Benjamin and he loved it…for short periods. 🙂 Lennon and Isla loved seeing their brother “standing.” Lennon was ready to push him around the neighborhood. Now we will start the process to try to get his own stander. This can take a while, so we must be patient. Hopefully, insurance will push it through without a fight.

Benjamin continues to do new things every day. He is signing ball, more, and all done, more consistently now and has started nodding yes a little. (Nodding no is still his favorite.) We have been playing ball. Benjamin is able to grab the ball with two hands, and he rolls it back on his legs. When he is supported in sitting, he likes to kick the ball. I would definitely say the ball is his favorite toy right now. Benjamin is also moving his mouth more trying to bite on pretzels and fruit loops, and can click his tongue on the roof of his mouth. He frequently makes kisses with his mouth, but on occasion, he will kiss the back of his hand to blow kisses. Benjamin also started coloring this week. He tends to make dots with his left hand and scribbles with his right. I am so proud of his ability to grip the crayon. Benjamin has also discovered the girls’ princess microphone. He makes cooing sounds so he can hear himself louder. We have to wait until the girls are gone to do this since they aren’t the best about sharing stage time. 🙂

Thanks for all your prayers about nursing. One of our two nurses was able to come daily. This will work until she moves out of state in May, but hopefully by then, we will have someone trained and ready to fill in. We will be so sad to see her go.

Please keep Benjamin in your prayers in two weeks. April 25, Benjamin is having his tonsils removed and a few “other items” descended. We are taking out his tonsils with the hopes of improved swallowing, but there is no guarantee. If he didn’t have to be put under for his other surgery, we wouldn’t have risked putting him under for the tonsils. After lots of thinking and praying, we decided to go for it. We know there is no guarantee that it will help with his swallowing, but when I think about what I would want for myself, I would want to be given the opportunity to possibly eat, drink, or even sit without being covered in drool. We don’t plan Benjamin’s care expecting a short life expectancy, we plan his care giving him the best chance for a great (not just good) quality of life.

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