We had been blessed with some very stable safe numbers for Lucas for a nice while, it was glorious and I actually did not mind hearing from the dietitians on a weekly basis. However Luke had a sharp dip in his levels at the end of May. So we upped his phe intake and waited for the response to that hike. Well it wasn't enough so we increased again and waited. Bingo. Got the number!
Nope, the next spot came back higher then expected so we dropped his intake and waited to see the response. Nope now his level was too low again (not the normal response) so we kind of scratched our chins but made a new change and waited again.
Nope, still too low! What the heck is this baby doing to us?!?
The problem is how "far behind" we are once we get his levels, anywhere from 3-6 days behind to be honest (Canada Day added an extra day of course). We do a heel cut, take the sample, send it in...then wait.
I actually have not the foggiest idea what this next blood spot level will be. I would expect it to be low low however if he zeroed out before we adjusted then I guess there is a chance we could see very high numbers which would freak me out as I have yet to go through that with Lucas.
I want to share a few examples of what Lucas' tolerance looks like in terms that make a little bit of sense. Bottles are measured in milliliters and food is in grams.
Food/Bottle Serving phe per total running Type size gr/ml phe total
| similac sensitive | 170 | 0.72 | 122.4 | 122.4 |
| gerber organic brown rice cereal | 5 | 4 | 20 | 142.4 |
| similac sensitive | 50 | 0.72 | 36 | 178.4 |
| phenyl-free 1 | 100 | 0 | 0 | 178.4 |
| baby mum-mum apple flavor | 0.75 | 6 | 4.5 | 182.9 |
| Heinz, Prune & Pears | 20 | 0.31 | 6.2 | 189.1 |
| gerber organic brown rice cereal | 1 | 4 | 4 | 193.1 |
| skim milk powder, instant | 1 | 17 | 17 | 210.1 |
| similac sensitive | 90 | 0.72 | 64.8 | 274.9 |
| sweet potatoes | 21 | 0.78 | 16.38 | 291.28 |
| gerber organic brown rice cereal | 6 | 4 | 24 | 315.28 |
| Heinz, Prune & Pears | 20 | 0.31 | 6.2 | 321.48 |
| similac sensitive | 130 | 0.72 | 93.6 | 415.08 |
| skim milk powder, instant | 5 | 17 | 85 | 500.08 |
This is his feed diary from today.
As you can see in blue those are his bottle of regular infant formula *normally this is breast milk however with the higher phe needed I used a high phe formula*
Then you can see his cereal amounts in green are really low. Most babies would get a few tablespoons of cereal but that is not the smartest move with Lucas - I could if I wanted to cut back on regular formula however I would prefer he gets more regular formula.
The yellow is his phe free formula which, as you can see, does not have any effect on his phe intake. So in theory I could stack his phe intake as all fruit, veggies and cereal and only give him the phe free formula to drink however it is not how I want him in-taking his phe and I much prefer breast milk bottles on days when I can make that work.
My goal tomorrow is to take a few photos of what each number up there looks like... and what an adult portion of certain foods adds up to!!!
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