Jude was so smiley yesterday when I got home that it literally made my entire day. He was smiling so big that his little dimple on the left cheek was showing brightly. However he was also having such an issue maintaining his oxygen levels that we eventually just turned off the monitor. About an hour after being home Jude started whimpering again so I took him out of his bed to sit him up on my lap. He loves his lap time and will just sit and babble to everyone that will listen. He is so heavy now that I end up having to lay him across my lap but he loves being held.
Jude's Scoliosis has gotten so much worse. This week we noted a remarkable change and that his spine is almost completely to the left side of his body now. I am no doubt this is responsible for a lot of his pain. The nurses do their best to keep Jude in his wheelchair sitting up straight for several hours a day but he can barely tolerate it anymore. Therefore, we are researching a new wheelchair and will be working on obtaining one. Jude does not tolerate the stander at all. I am sure it's a combination of his feet and the inability for his lungs to function properly. I feel terrible for him and I am sure it's causing a lot of pain. I hate seeing his little body twisted and his feet turning in. It's amazing how our bodies react when we don't walk or sit up on a consistent basis.
Hospice came by and checked on Jude twice this week. He still runs an intermittent fever occasionally and has been crying out in pain. It's always been a battle with Jude trying to figure out the source. I do think it's partially neurological but we have also seen an influx in recent seizure activity. This generally means Jude is getting sick but the sickness hasn't reared it's head in a way that we can pin point it yet. The good news is Jude has hours where he is still very happy and that's good.