Jayden is undeniably my favourite person in the whole world. I am so proud of my gorgeous son. His character is so strong, his spirit is so pure, his heart is so loving and his emotions are so exceptionally well developed and mature. Yesterday was a really exciting day. We ventured out of the house for the first time. Jayden’s Baclofen pump needed a refill, which meant a long car trip through to Sunninghill hospital. I have to admit, I was quite nervous about it and wasn’t sure how we would manage with him in the car, the suctioning outside of the house etc. Jayden was incredibly happy to be leaving the house. He sat so beautifully in the front seat of my car (yes this is his spot, now that he has grown so much – I have checked airbag specifications and its safe, don’t worry – I was). Jayden LOVES the front seat. He sits up straight and takes in the whole world. He loves being able to see out of the windshield and side window at the same time. He sits up unassisted. In the early days he slouched a little and I told him that if he didn’t up nice and straight he was going back to the back seat. Well that clinched it. He immediately sat up straight and continues to do so. It was all smiles and staring out the windows in wonder yesterday. Sophy and Elisabeth were in the back seat with the suction machine, which we only needed twice on the way there and 4 times on the way back. When I told Jayden that he was Prince Jayden the 1st (he loves the cartoon Sophia the 1st) and we were his entourage he laughed at me. Jay’s neurologist was really impressed with his progress. She also commented on how much weight he has picked up and how good he is looking. He has gotten nice and stocky, built like my family on my dad’s side. We are built strong, muscular and to last. Not a skinny supermodel amongst us … lol. At our best, we have toned body-builder strong bodies … at our worst … we can jump-start Boeing 747s. So yes, Jay is nice and stocky … not as toned as usual and I guess it’s time to watch out that he doesn’t go over to the chubby side. But he is looking so good and the tiny little roll on his tummy is adorably cute! Jays secretions have really come down significantly and its only in the late afternoons that we tend to have to suction a lot as they seem to increase at that time of day. The other amazing thing is that the Doctor is now comfortable with prescribing Valegan for Jayden to sleep, as he is on a very low dose and she has agreed to prescribe the Valegan continuously now … YAY! This is a huge weight of my mind and it’s so wonderful, because Jayden is sleeping so well with the Valegan and has been resting beautifully every night. It was a big day and both Jayden and I were absolutely knackered after our excursion. Jayden recognised the hospital and got a nervous look on his face when we arrived. I told him not to worry as we were just going to show his doctor how well he was doing and we were going to put in more baclofen so that his muscles will stay nice and relaxed. He looked at me wide-eyed, but trusting and was really happy when we were leaving the hospital. The smiles returned. So it’s time to get social again. Weather permitting – stay away rain and wind - we will be going to visit my buddy and her family this weekend and will go off to church for the first time, with Adelaide, our other amazing nurse, escourting us. I have an overwhelming excitement about Jay’s progress now … the dark days are gone!
Posted on: Fri, 17 Oct 2014 05:45:40 +0000
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