We’ve mentioned in a previous post that Callie is underweight for her age. She’s so light that she can no longer be plotted on a growth chart and she’s still losing weight. An occupational therapist has recommended a high-calorie, high-fat diet to help her gain a few pounds.
After thinking about this for several days, we’ve decided not to implement her advice right away, but to keep an open mind as we learn more about other alternatives that aren’t as dangerous to her heart, circulation and digestion.
One alternative that seems drastic but that we’re considering is a feeding tube. We know that many children with SMA have a feeding tube surgically placed in their stomachs to help with nutrition or safety if they have swallowing problems.
We’ve talked with many SMA parents, and most of them have recommended that we not wait until Callie is sick to get the tube, since her health would already be compromised. Even a teenage girl with SMA told us that getting a feeding tube was one of the best decisions her parents made for her.
We’ve known for awhile that getting a tube was a possibility. We always want to stay ahead of problems and are hoping that this might be a solution to Callie’s nutritional needs. We will post more as we learn more.
We again want to thank everyone for their heartfelt concern and prayers.
Christy, it is so good to hear from you. We had heard about your sweet little girl and our thoughts and prayers were with you, but now we have this new reminder and will be praying God’s wisdom for you in your choices. Christ’s love will be your rock.
Christy, it was so good to meet you in person yesterday at Jack’s dinner. I had already heard Callie was there and got to go see her in the nursery before I went to Sunday School. I am so thankful that you were able to come see your Grandpa in spite of all you have going on. I know he will always treasure having his family surrounding him. We have offered many prayers for YOU and Callie over the past year. May God’s richest blessings and wisdom be yours as you face each day.
I really enjoyed seeing Callie Saturday! She is so sweet & I am very glad that I got to spend some quality time with her! I think Callie is very blessed to have parents who are ready to stay ahead of the game!
Much love,
Lindsay
Thinking about you as you navigate these difficult decisions. If you want to talk, I am here for you. Hugs, Victoria
So sorry that you are having to make this difficult decision. I know that you both will make the right choices for Callie, she is so lucky to have you as her parents. All of my kids had so much fun the other day getting to spend time with Peter and Callie. Hope we can do it again soon. Much Love, Kathy
sorry…Never FORGET the love of your Father!
I hesitate to remark b/c I don’t want to say all the “right” Christian things. Just know that your little girl is being prayed for and never forge the LOVE of your Father. The cross is the never ending reminder of how far He has gone to prove His love for us. I all of our trials, this truth will sustain you.
Much love to your and your precious family.
Lori