It’s been a little while since I’ve done a Rose update and that’s because we’ve been so busy living very full lives! I know some people worry when they don’t see updates for a while and I try to be mindful of that. I’m so thankful to have people that deeply care about Rose, me and our family and how we are doing.

I only have good updates and a progress report to share! Ever since Rose’s major surgery back in September to cut out the stricture in her intestines, it has essentially fixed her issue with food passing and she has been able to eat without restriction, vomiting and things getting backed up. Since then we have been working for several weeks to increase her feed volume (through the tube in her nose) and decrease the TPN. The TPN is what she has been on since December when she got very sick and it’s really not good to be on long-term and goes through the central line in a vein in Rose’s heart.
This is different than the NG tube that is in her nose. which she’ll need to have for a while longer until she can learn to eat and drink all of her calories. I know it can be confusing.
I’m so happy to tell you all that on 10/11, Rose had a surgery to remove the line from the vein in her heart & is now officially DONE with TPN!!! This means she no longer is at a daily risk for sepsis, doesn’t have to get 2 shots a day to prevent blood clots (and we don’t have to GIVE them to her which has been so sad), she doesn’t have to be hooked up 12-20 hours a day to machines, no more emergency room trips because her line has broken, no more weekly dressing changes from a home health nurse and blood work, etc.

Rose was able to take her FIRST REAL BATH and we were able to get down to the beach where she very happily played in the ocean and pool and Michael and I were overjoyed and (almost) worry free. We are so thankful and cautiously optimistic about the direction that Rose’s health and health care is moving!