Skip to main content

Highway to the safe zone

Very happy to report that Lucas has safe zone levels (finally!). As of Fridays blood spot he was 252 which is my personal favorite area for him to be in at, as it means we have some "wiggle room" on each side if his numbers start to vary again.

For this to be considered balanced we would like to see three consecutive safe zone numbers. Why? That would mean we have found a tolerance that his body is able to keep up with.

The good news too is that he is tracking just fine on the weight charts and we can stop worrying quite so much about his weight gain. Before it was once a week weighing him and measuring him, now we are down to every 2 weeks!!

Hope everyone is having a great July!!

Comments

Popular posts from this blog

Toughest Kid Around

Today was such a busy but great day for the three of us. Luke, Jeff and I headed to the Stollery at 9am to meet with his metabolic team.  The appointment  The dietitians always start things off with weighing and measuring Luke to see how well he is growing and if you have been following the blog you may know Luke has kinda been a bit light on the scale. However today we were happy to find out he is doing really well both height and weight wise! He is in the 50th percentile for both!! Then we talked about his diet some, touched on his formula intake and got the green light to try him with a new juice type formula (which will be good for summer holidays) Then in came Dr. S, she is his pediatrician/metabolic doctor. I love this lady! She is great at offering guidance and suggestions that will make things easier for us as he gets older, things like having him help us make his formula, help us weigh and measure his foods, those sorts of things. The exci...

14 days and counting...

Fourteen days of safe zone levels for Lucas! What a fantastic feeling &  along with the great feeling of safe zone levels we also have the great news that we still have  no diet changes in over  2 weeks ! I am very relieved that we appear to have found a good place with Lucas' diet, it means he is getting all the protein he needs; whole protein from breast milk and the Similac formula and also the phe free protein from his PKU formula. We have a "big" appointment with his Metabolic team of doctors and dietitians on Wednesday next week and there is talk of us learning about his current tolerance, which I look forward to hearing and sharing! I have to admit that the day leading up to a phone call from the dietitians I tend to start feeling anxious, wondering if his levels have changed despite no changes in diet and just a general worry. This makes me remember what fellow PKU parents have told me; "don't let the numbers control you". I have also had p...

Anger. Frustration. Advocacy.

Anger & Frustration Well the good news I posted about here  was that we were thrilled to find out that Luke's food was now going to be fully covered by Alberta Health Services. I placed a large-ish order of new foods for Luke but held myself back from "going crazy" with the order. Turns out this was a mistake.  The foods that were listed were never meant to be free... meaning there never was a change in coverage. I am not 100% sure on the details as to how this mistake happened, it sounds like an error with the metabolic food distributor.  They have not sent an invoice for the cost of the foods I ordered, and honestly I cannot imagine how they could. However foods that are very pricey are ones that Lucas loves, including the animal pasta that we tried for the first time from the free order.  I have known of this for a awhile now, as the website was corrected not long after I received our order. I struggled to find a way to post about this in a way tha...