Fourteen Pounds!

Since moving to his isolation room in March, Parker has remained infection free. As a result of feeling better, he has been eating up a storm. When Parker was born, he was in the 25th percentile for his weight. This means that at birth he weighs more than 25% of all babies born. Babies weights are charted on a standard graph against average weights of babies for specific ages. By looking at the chart you will notice that there are lines that display the average weight for babies through the first three years at a specific percentile. Parker was born at 6 pounds and 13 ounces. That places him around the 25th percentile. Generally, a baby should gain weight at a rate that keeps them at the percentile in which they were born, assuming everything else is normal.

Generally, SCIDs have difficulty gaining weight since they spend a good portion of their time dealing with an infection and not feeling very well. As you can imagine, when a baby does not feel well, they do not want to eat very much. For Parker's form of SCID, ADA deficiency, the primary problem is an enzyme not functioning and as a result a toxin dATP accumulates in the body. Those of you that remember high school biology will remember that ATP has to do with energy. The toxins in Parker's body cause his metabolism to increase. This means that he burns calories at a greater rate than the average baby. A test was done on Parker when he first came to isolation that showed he burned calories at a rate of 1.3 times greater than the average child his age. That said, he needs more calories in his diet to gain weight at a rate that would keep him at the 25th percentile that he was born at.

Without knowing that Parker had ADA deficiency for the first six weeks of his life, he was not getting enough calories to gain weight. When we came to isolation, Parker had dropped to the from the 25th percentile to the 3rd percentile for his weight, a drop of 22%.

After helping Parker fight the bacteria they found in his lungs after completing his lavage in early March, he began to feel and eat better. We then changed Parker's formula to Nestle Good Start which seemed to look alot more like milk and as a result, he began to devour his formula. Lastly, his dietician changed the concentration of his formula to reflect the fact that he was burning calories at a much quicker rate. His formula was changed from 2900 KJ/L to 3800 KJ/L. The formula was slightly thicker but Parker did not seem to mind one bit.

Since coming to isolation Parker's daily weigh-ins have been recorded. Parker has been gaining weight at just over an ounce each day. I have been plotting the data in Excel so that I could obtain a linear regression since we began keeping track of his weight.

Parker weighed in at 14 pounds yesterday. This places him just over the 25th percentile. We are so happy that all of the work we have been doing with Parker here at the hospital has continued to pay off. The nurses and doctors do an amazing job keeping him healthy. The PSAs (cleaners) do a spectacular job cleaning his room each morning, sanitizing every last inch. Thank you to everone who has helped Parker finally reach his goal weight. As a result of reaching the 25th percentile, and so that he does not continue to gain weight so quickly (babies generally gain weight at a lesser rate once they reach four months) his formula is now concentrated at 3300 KJ/L.

My wife and I would like to thank everyone at CHUM and CityTV for doing an excellent story on Parker last night on CityPulse at 6 and 11. You can check out their website here. There is a link to the actual interview that City did on that page. Thank you to everyone who has visited our site in the past couple of days. Please come back regularly to see how our little boy is doing.