Congrats on the arrival of the new lil one!!
Our son will be two in May. I completely understand being stressed about the lil one, and this being an additional worry. Jacob was born at 28 weeks gestation, and already causing us incredible stress, when the news of PKU was delivered.
Although Jacob is doing extremely well, I cant say we have hit the remarkable milestones that Clenk has achieved (Kudos!!) Jacob is right on track for being a micro premie. In some areas, he is exceeding expectations. PKU has not affected him negatively in this regard.
There was a couple weeks where Jacob didn't seem to learn anything new. His levels returned slightly higher during this time. We were assured by the clinic that they were likely unrelated. They did however adjust his diet to compensate for the increase in levels, and he continued on with development just fine. The paranoid parent in me often wonders if they were related, however, the optomistic side, the blood levels quickly told us, the adjustment was made, and there was no lasting effects….even if it was related. (Hmm, that was meant to not stress you, not saying he was affected, I have been assured he wasnt, but even if it was, they easily intervened and corrected whatever may not have been affecting him) The point of it is to say, you're not alone. The medical teams are wonderful!!
We have two older children (non pku — previous relationship) aged 12 and 13. I cannot count how many times I have said he is just like the oldest…and how she behaved. So, I think he is doing just fine
Cost. Agreed, different by country / state/province. We are in Ontario. Formula and select (large list) of food covered by a program here. Many more available for a fee. (Im jealous Clenk, we have to buy the hot dog mix, its about 13$ I think for the make your own package. And he loves hot dogs) Chicken Nuggets are covered thou, and he loves those too.. they seem harder to make, so I will shut up and buy our hotdogs! haha
We have talked about Kuvan too. Jacob completed a test which says he will respond, however, I want him to be older before I look for that. As long as we can manage his diet, I prefer that option.
Enjoy your new bundle!! In no time, PKU will seem much less than it is right now. All of our family has adjusted well, including the extended family of grandparents, aunts and uncles who can manage to feed him a meal without us or them worrying about something going wrong. He goes to a daycare (where we provide pre-made meals and portions including snacks) but his diet and safety is not a concern.