First Trip to the Country

After three days of packing and a four and a half hour car ride, we have made it to Nana’s and PawPaw’s. The car ride was relatively smooth, with only one incident of Isla screaming (just for fun) at the top of her lungs until everyone in the car was awake. She doesn’t like to be alone. 🙂 Benjamin napped on and off and enjoyed being entertained by Lennon and Isla behind him. Before leaving, I had to sign a paper stating that there is no one to help us with his ventilator if we should have trouble, and that we are leaving against their recommendations. Hilarious. I had to contact two other people just to leave town with Benjamin, and I was suppose to give 2 weeks notice. I am sorry, but this was decided Saturday, and we may just pick up and go at any moment. This ventilator will not hold us back. This has been a great week at the Sirmon’s. Benjamin and Isla had their first haircuts. It was time to get rid of Benjamin’s mullet, or what we called a nullet (neo-mullet). This was a difficult choice since Benjamin loves to twirl his hair in the back, but it was getting a little out of control. He is really starting to look like a big boy and not just a baby. Benjamin had another great week of therapy. He is keeping his mouth closed more frequently, moving his arms and legs, and even using his trunk a little more when we sit him up. Monday, we go to Tulane for his speaking valve. This valve will force air to move out through his mouth instead of through the circuits connected to the vent. I pray that Benjamin will be able to tolerate this, and that we will soon be able to hear his sweet voice. Benjamin is also requiring less supplemental oxygen. Upon discharge from the hospital, Benjamin required one liter. Over the past week, he has been on 1/4 liter and I have even turned the oxygen off completely for 30-40 min without any problems. (Thank you God and Sister Dolce) In the afternoons, Benjamin has enjoyed spending time with his sisters and watching the Olympics. I know this sounds crazy, but he loves female water polo. I am not sure if it is the blue water, fast movements, or ladies in bathing suits, but he smiles when it is on. We might have to DVR some matches for future enjoyment. Benjamin also had his first sibling injury this week. He was quietly resting in his lounger on the floor watching Lennon and Isla practice their floor routines on our furniture. Their floor routines involve props with ramps and pillows. As Isla was performing a tumble off the couch onto a group of pillows, in what seemed to be slow motion, her foot came out of the roll and landed right on Benjamin’s head. Now, I have always been very relaxed about minor bumps and falls, but everyone in the house jumped and yelled as I quickly scooped Benjamin up to comfort him. He cried (silently) for just a moment before I was able to calm him. On the positive side, it was so great to see Benjamin react so quickly. He has come such a long way from when he showed no emotion at all. This was the silver lining. 🙂 I know our life may be a little crazy, but I feel so lucky to have these three amazing kiddos. Another mom of a child with MTM posted a message stating how blessed she felt to have been given such an amazing child. Agreed! I thank Benjamin everyday for what he has given and taught me. He has changed my life forever.



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