Most of Avery's updates and entries are written by her mother, Marissa.

Venting... February 11, 2011
I'm at the hospital once again with Avery while she does dialysis. So sick of being here 4 days a week already. Takes up my whole day and it's boring. I'm complaining but I can't imagine how my Avery must feel. Now I feel bad for complaining or venting lol.
Dancing machine... February 08, 2011
Watching Avery do the Cha Cha Slide!!! She's so adorable. Avery loves to dance!!!  Makes me happy to see her happy and moving around!
Back to school... February 08, 2011
Avery went back to school on Monday!!!  Her class and teacher were happy to have her back. Deer Park Elementary sent "Welcome Back" flowers to the house for Avery!!  Soooooooo SWEET!  She was very happy!



Poor growth and weight gain are two major problems for children with kidney failure, so diet is usually not restricted unless needed. Children grow fastest during the first two years of life. Therefore, the earlier the age at which kidney failure occurs, the more likely growth will be affected. The goals in feeding a child with kidney failure are to promote normal growth and protect his/her health as much as possible. When the kidneys are not working well, they may not be able to get rid of waste products from foods in the diet. The doctor and dietitian will watch for signs of problems and suggest a diet if needed.

Does my child need to be on a special diet ?

The diet must meet your child’s nutritional needs. Your renal dietitian has been trained to help you make meal plans to meet your child’s needs. She will provide individual counseling and offer helpful suggestions, which take into account your child’s food likes and dislikes. Your child’s diet may need to be changed depending on:

  • how well his/her kidneys work
  • if he/she is on dialysis and what kind of dialysis (hemodialysis or peritoneal dialysis)
  • if he/she has had a kidney transplant.

Your dietitian will help you and your child understand why changes are needed and how to make the changes. It is important to work closely with your child’s dietitian. Because your child’s appetite may change throughout the course of kidney failure, it is important to remember that understanding and patience provide the best chance of success at meal time.

The nutrients most often affected in kidney disease are:

sodium potassium
phosphorus protein
calories fluid

Balancing these nutrients in a healthy diet can be confusing at first. Not all nutrients need to be changed at once. As kidney function decreases, the diet may need to be changed further.

What diet changes are needed before dialysis ?

Before dialysis, few diet changes may be needed. Phosphorus usually is limited at this time, which means less dairy products. Often your child’s appetite may begin to decrease, making it important to encourage him/her to eat. Infants will probably need a special formula to increase calories. Sometimes the amount of fluid your child may have is limited. Despite your best efforts at helping your child meet his/her nutritional needs within necessary diet restrictions, it may be necessary to start supplemental enteral feedings or “tube feedings” to help your child with chronic kidney disease grow and gain weight appropriately. Don’t be discouraged if this happens to your child; it does not mean you are a “bad” parent or can’t provide your child with an appropriate diet. It is just sometimes very difficult for children with chronic kidney disease to find enough foods they are allowed to eat that they actually like. Oftentimes, once tube feedings are started, some of the conflict that may occur between a parent and a child related to diet is decreased. As kidney function decreases prior to starting dialysis, nausea and vomiting may become more common. Mention this to your doctor and dietitian when your child is seen in clinic.

Although your child may be meeting his/her nutritional needs adequately, it is not uncommon for children with chronic kidney disease to be much smaller than other children of the same age. Therefore, it is sometimes necessary to consider the use of recombinant growth hormone to optimize your child’s growth. This requires a shot daily or weekly to stimulate improved growth. Talk with your child’s doctor and/or renal dietitian about any concerns you may have about your child’s height.

Prior to starting dialysis, your child with kidney disease may also need extra iron and erythropoietin (or EPO) to treat the anemia frequently seen in patients with chronic kidney disease. When children are anemic or have “low blood counts,” this can affect their energy level and appetite. It is important to treat the anemia, so that your child will have more interest in eating.

What diet should be followed with peritoneal dialysis?

With peritoneal dialysis, your child needs to eat more protein and limit some high phosphorus foods. Since most high-protein foods (dairy products and meats) are also high in phosphorus, your dietitian will help in choosing foods to use. Usually, there is no need to limit potassium, sodium, or fluid. A special vitamin supplement made for people on dialysis is needed. Infant formula may need to have extra protein or calories added to it.

Children on peritoneal dialysis may not have a good appetite. The extra fluid in the abdomens can make them feel full. Your dietitian may suggest high protein, high calorie supplements and frequent, small meals.

What restrictions are needed on hemodialysis?

The following are usually restricted on hemodialysis:

  • sodium (canned, processed and packaged foods and table salt)
  • potassium (found in many vegetables and fruits)
  • fluid (anything that is liquid at room temperature)
  • phosphorus (found in dairy products and meats)

Protein may also be limited, depending on your child’s appetite. It is important that your child takes in enough, but not too much protein in his/her diet. Your dietitian will tell you what to feed your child based on his/her needs and laboratory values. A special vitamin supplement made for dialysis patients will be needed. Your child’s appetite may vary. Regular eating times and snacks are needed so your child will eat enough calories.

Strict Diet February 02, 2011
Well we got in trouble with the Nutritionist. The hardest part about Avery being on dialysis is that she has to be on a strict diet. She can't have anything that she likes (cheese, milk, pizza, chocolate, chips, yogurt, bananas, etc). It's a challenge because she's young and doesn't understand so she gets upset.... but we will get this under control.  It's a learning process for our whole family.