It is so hard to believe it has been over a week since Daniel’s surgery. These last 10 days have seemed surreal in many ways. It has been hard to believe we are actually at this point. After over a year of considering SDR for Daniel, then months of deliberate focus on applying for the surgery, being evaluated and then actually preparing for it, it feels strange that we are on the other side of it now.
Things in the hospital went exactly as we were told they would. Aside from minor things like failed IV’s there were no surprises. Dr. Park’s team really knows their stuff, and have done this so many times they know just what to expect. They have done a great job of communicating these expectations to parents as well, so in spite of the challenge of going through the surgery and subsequent hospitalization, we were very well informed and things were very predictable.
Since we have been home things have been very hard and hence the lack of many posts. I have posted videos on Facebook of clips from therapy sessions, but otherwise have not had time to write about how things are going. Our nights have been very hard, with pain, discomfort in his bed, medication reactions, it seems. Last night we got a few uninterrupted hours of sleep, and are hopeful for more good nights to come.
Daniel is very weak, and this is hard for us to see and process. This weekend he cannot stand up at all, even holding on to something. Therapy is going to be hard, hard work. He has done well in therapy so far, and his therapist has said he is doing better than she expected at this point, so that is good news. We were able to get him in the pool today and will try to have him swim some each day this coming week, as it is expected to be hot. In the past swimming has really helped him, and we are hopeful that it will continue to help him build strength. He has been unwilling to eat or drink very much and so has been having some headaches as well. He is easily agitated and very uncooperative at this point. We are desperate for your prayers for our family.
We are so grateful for the help we have received with meals, and so touched by the cards and notes many of you have sent to Daniel. I had arranged for mail to be forwarded to the house from his mailbox, but we hadn’t received any forwarded mail, so I stopped by the box later last week and was so tickled to find it just full of special things. Thank you so very much!