Yesterday was a day in which we could smile. My dear sister came with her children to help us out around the house. It's always nice to spend a day with family (even if that means work.) The yard looks in tip top shape again:) Spending time with our other children, nieces and a nephew sure add joy to any day. Marije (our respite worker) came to watch Jacob, so we could get more work done. She is one who truthfully thinks outside the box!
|Marije experimenting with an inflatable pool tube. |
Jacob spends time in that tube every day - he really enjoys it!!
Once Denise and Marije were gone, it was back to caring for Jacob. He loves it when we hold him. So, I was doing what I do for many hours most days - holding him. All of a sudden I saw a smile, something which we hardly see any more! It used to be a common occurrence - not any more. He was full of smiles, so Breanne quickly got the camera. She captured a video of him smiling and giggling (I tried to upload it, but it didn't work. I'll try again later.) It added so much joy, considering the days in which we've been living.
To summarize our meeting, we are going to continue with his feeding tube, only making slight changes to his current meds and feeds. We are adding a different medication to help with is unexplained irritable periods. He seems to have more fussy periods, where it is much harder to comfort him. He will stay on oxygen to help him with the times in which his oxygen saturation drops drastically. For the most part though, he doesn't need oxygen anymore:)
As a whole, things are not really going in the direction we would like to see them go. Our goal is to keep him comfortable as possible. Hopefully with the Lords blessing the new med will help out.
After the meeting, our dear case manager, Becky, stayed to talk with just Paul and I. She puts into place most medical things that happen in our home. She oversees a lot, and we are so thankful to have her as part of our team:) She has a heart of gold!! She said something that really struck me. We were talking about Jacob's care and condition when she said, 'Sometimes instead of speed bumps, we have speed mountains.' So true. It seems like in Jacob's life, we've experienced few speed bumps, but many speed mountains!
Jacob responds very well to Caleb. Truthfully, I'm not sure why, because Caleb is not always the most calm and loving three year old!! I love to watch the two in their own world communicating!!
Here's the two of them:)