Sunday morning we went to our "613 & me" program for the kids B'nei Mitzvahs. They got to do a little bit of service, while meeting local organizations they could do service for. One of the cool parts about this is they get to share in this experience with each other but also with their cousin Devin who will have is Bar Mitzvah 6 months before the twins. Now it will be time to figure out what they kids want to do....the little bit of talking we have done, Becca wants to do something for Make a Wish or Give Kids the World, while Ian wants to do something for Camp Simcha Special.
Ian was given the opportunity to fire a paintball gun from our back deck into the backyard as some brave Chai Lifeline volunteers. And yes they were moving targets. Last night one of the guys from Chai Lifeline came over for Ian to do something you would never think he would be able to do but just knew he would love to do...shoot paint balls...yup. They brought the guns, the paint pellets, some protective gear and 3 of them were the moving targets. We went out onto our back porch while they ran around the back yard and shoot....got them in the head, in the back, in the butt, on the leg....Tzvi was smart and has gotten to know our family over the years..he did not tell me what was going on until 20 minutes before hand for fear I would say "NO". Wise move Tzvi.
On a different note...the past few times we have been out of the house with Ian, he has required oxygen. His oxygen levels have not dropped but his breathing has become labored. We think that this maybe his new normal. The HME (in line humidification system we use when out of the house) is just not doing it for him without the oxygen anymore. In addition, at least 10 of the past 14 nights we have had to give Ian his PRN pain medicine (motrin). He has not been able to get comfortable which is requiring a lot of re-positioning. After talking with Erin ( his Gilchrist nurse), and her reporting to his team at their weekly meeting this morning we are going to be working on changing his pain management. We will be increasing his methadone to 2.5ml, while this is not a huge jump we are hoping it will help him. In addition. Dr. Hutton does not want him to use the mortin as the PRN pain medicine any more as it is a non-steroidal which can take a toll on his body. So we will be starting him on oxycodone as his first line of PRN pain meds.
This has hit us a little hard, as we knew it would happen and we know Ian's comfort and quality are what is most important but as with any "new normal"....it just is....our "normal".