Catch up…

20161127_162924-01I’m playing the game of catch up on blogging. Wow, this past week has just been so busy! It’s got to be the holidays. Thanksgiving break was so nice. Now that it’s over we have our Christmas tree put up and cinnamon candles burning. Too early? Never.

So I know I said I would be making a PKU friendly recipe for Thanksgiving. Well….I failed. Tip: don’t use Tapioca Flour in place of All Purpose Flour. It won’t hold together and you won’t be able to make a dough out of it. I was trying to make a vegan sweet potato cinnamon roll recipe, which by the way looked SO GOOD. It just didn’t work out. For those of you that don’t know, if you have PKU then flour is something you can’t have. Normally, you would make this mixture here for baking purposes to substitute the flour, but I literally could not find wheat starch anywhere. Does anyone know where I could get some? Or where the best place online is to order some wheat starch?

Anyway, what we ended up doing was making some brownies. Not PKU friendly ones sadly. We were running late though and I was so frustrated from not being able to make the cinnamon rolls. Maybe when I find wheat starch then I can make the baking mixture and try again! Thanksgiving turned out great regardless of me failing at baking.

Jump to last Sunday…20161127_210840-01

We normally take Ezra’s blood on Sundays. Blah. I’m not sure why we chose Sunday nights to take blood work because of how stressful it is sometimes. Not a good thing to go to bed tense before a work week. I took a few pictures show you how we do this process. We start off by warming his foot up. We used to warm his foot up with just a warm wash cloth, but I ordered this one here and it has been a life-saver. It warms the foot up faster and makes the blood flow much easier!

So while we are warming his foot up, we start to get the supplies ready.20161129_110011

Pictured here is the card we send in to the lab, which is how we get PHE levels back. A lancet which pricks his foot. Obviously a cool Star Wars Band-Aid, that Dustin picked out of course, for after we get done drawing the blood.

 

We have to fill in 4 circles completely. Like this:

20161127_211642-01

Ezra used to cry every time we did this. Now we give him a toy for distraction and it’s rare if he cries now. The stressful part is when the blood flow will stop before we’re done filling in all 4 circles. We sometimes have to prick him twice, which is not fun. We used to have to take Ezra to Children’s Hospital weekly for blood tests. Now since we do it ourselves, it’s much easier! My tip for any new parents with a PKU child having to do this: distraction, distraction, distraction. Stay calm and try not to get frustrated. It does get easier as they get older. I remember when Ezra was a newborn and had that newborn loud cry…whew. That was hard to deal with along with the wiggling while trying to take the blood.

Alright. Time to get ready for the next holiday. Christmas!!! Maybe I’ll be able to make a PKU friendly recipe then. Not making any promises. Thank goodness Ezra isn’t eating table foods yet like those cinnamon rolls!

Let me know if you have any questions!

xoxo, Sky

 

 

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