When Jacob was just a couple weeks old, we had a meeting with Lisa, the Palliative Care Nurse Practitioner (her actual title is Symptom Management and Supportive Care.) I had little understanding why we needed to meet with someone in symptom management and supportive care. It was told us from the Medical Team that it would be beneficial for us. Wow, were they ever right. She drew the following diagram during that first meeting.
There sure seems to be no light at the end of the tunnel if we keep our focus on Jacob and his condition. What a sad lot. Yet, there is a bright side. Oh, for him to see His Maker in perfection. To be rid of all his weaknesses and pains. Forever!
This past Saturday we were privileged to have Jacob's pictures taken by a photographer who is affiliated with Helping Hearts. It is an organization which captures the precious moments with special needs children and their families. The photographer was simply amazing. I'll post some pictures once we have them :) Yes, I'm super eager to see them. What a blessing to be able to take 2 year pictures!
Here's some odds and ends from the past 2 weeks.
|Julie, one of Jacob's snuggle partners at the respite home!|
|What a unique way to sleep. That would be our Jacob :) Super fussy one minute, then all slumped over and fast asleep. I love his red hair!|
|Exploring in the high chair. It's super fun to have him as part of the family during meal times.|
|The end result of happy stimulation.|