Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, October 12, 2015

Our lives are centered around food

Physically Angela is doing as well as can be expected. Her system is adjusting to her new way of eating as well as her new diet. (gluten free, dairy free, casiene free) Never before has it been more apparent to me how much our lives our centered around food. Every major holiday is scheduled around the meal, family reunions we discuss what dish we're bringing to pass, mother/daughter dates a dinner out, or starbucks, or some other food related item always seems to be included. Class parties at school are about pizza or cake.

And then there is Angela.

One week ago tonight was the last time she had anything by mouth. I know the cravings are driving her crazy! Of course she has done better than I thought she would, but we're still putting locks on the kitchen pantry (It started out as a necessity for Audrey but now we have Angela in the mix too) In the beginning when we were discussing the tube we thought maybe she could have a pudding or jello at lunch with her friends or when eating with family. Unfortunately after surgery we were told no because her airway is so inflamed due to severe irritation due to chronic aspiration. Finally, for the first time in months, Angela does not have a horrible cough and we don't want to push her back over that edge.

Today we went to visit her transition program. She has missed a lot of school and really misses her friends. It was great to witness their warm welcome when she entered the room. Then I met with her program case manager and the school nurses to discuss Angela's new plan of care. After a bit Angela joined us and she was already pale and tired looking. Clearly she is not yet ready for full days. She will attend half day Tuesday and Weds, then there is a statewide school break until Monday. I think by then she'll be ready to return to full days.

I cannot tell you how hard it is to tell my child she cannot have french fries or pizza, ice cream or waffles, pop or juice. She has even requested milk and eggs, both things that she dislikes I am praying her cravings go away sooner than later as she forgets what food tastes like.

This past week has been exhausting. Combining all the things affecting my health has wiped me out, and Dean is feeling it too. We started out the school year with Angela in the hospital and have yet to find our morning routine. We hope that next week we can find the calm, peaceful mornings we cherish with our kids. 


Stacy Hanzely said...

Looking forward to reading your post on finding that calm, peaceful morning in the near future. Keep on keeping on, you guys are an inspiration!!!

Heather said...

How is Angela doing now, a week or so after her procedure?