Caden is doing great. He was weighed on Thursday by the nutritionist at 10 pounds 7 ounces. That is a gain of 13 ounces in one week. Caden continues to have periods where he can go days without any reflux. He can also have days where he will reflux several times in a 24 hour period. We have not been able to find any predictability in what causes the reflux. He will sometimes reflux 5 minutes before a feeding and other times he will reflux when he is almost finished with a feeding. We still have a nurse monitor him at night since there is absolutely no predictability to his reflux and he still is showing no significant signs of swallowing. There is still a high risk of aspiration or drowning if he refluxes without being able to swallow.
Caden was also switched to a new formula over the past week. He is now completely transitioned to a 50/50 mixture of the new formula (Similac 60/40 PM) and Mom’s milk. It entire mixture is still fortified to 24 calories. The new formula was introduced primarily due to the results of some blood and urine tests that the endocrinologist had run to determine Caden’s Calcium levels. The new formula has done wonders for Caden’s diarrhea. We also have Caden tested for milk allergies this week due to the GA doctor insisting that Caden’s diarrhea was probably due to a milk allergy. We knew better, and nipped that in the bud real quick by having Caden tested for the milk allergy. We felt that a little prick on the skin was much better than weeks or months of experimentation with formulas to see what Caden’s reaction would be to the milk proteins.
The nutritionist previously mentioned is part of a group of therapists and specialists that visit Caden at home. These services are provided through a program called BabyNet. BabyNet brings services to the home of special needs children from ages birth to three years. The program provides services at no cost to the family. BabyNet bills our insurance and Medicaid first and then they have funds to pay any outstanding balances left over. Caden gets a physical, speech, and occupational therapy along with the nutritionist and early interventionist through this program. These folks all have come to evaluate Caden so that they can work with Sherry and me to come up with a plan for Caden’s growth. This plan called an IFSP (not sure exactly what the acronym means) and includes general short and long-term goals for Caden’s progress in all the areas covered by the therapists. The nutritionist was very pleased with out progress on Caden’s feeding. Sherry had gathered some information (growth charts and mathematical formulas) from a friend who has a child with similar feeding problems. I used this information to build a spreadsheet to calculate the daily volume that we should be feeding Caden to get him up to “normal” weight for his age. The nutritionist gave us results from her calculations that were within 1% of what I had calculated. She was very pleased with our interest and attention to detail in regards to making sure Caden gets the proper amount of food each day. She will come a weigh Caden and make sure we are on track with his feeding volumes on a weekly basis.
I hope this posting is exciting to you as it was for me. Things have really been going good for Caden and the rest of the family. We are a bit unhappy that I will be departing on travel tomorrow for over a week. I will be in New England all the way through Easter weekend. We have verified that Sherry will have a nurse here every night that I am gone. My Mom will be in town to help out through the Easter weekend.
I would like to ask you continue to pray for all of us. Sherry needs to have a peaceful and stress free week. I ask for traveling graces. My Mom had some outpatient procedures yesterday and needs comfort and healing. Our dear friend Robin is having several issues in her family that she needs wisdom to deal with. Our friends who have gave us the feeding calculations are taking their son in to get a g-tube this week. Their little boy is very near to Caden’s age and they need peace of mind that they are making the right decision to get this procedure done. We need to continue to thank God for the blessings that we have already received through Caden’s healing and for the support from you our family and friends.
Please don’t forget what the coming week celebrates.
“For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.” John 3:16 KJV
Blessing to you all,
Hank O