Wednesday, April 3, 2019

Here we go again!

So it has been 3 weeks since our last appointment. 3 weeks of dosing daily at home and a small bump in the road. Patrick came with us for today's appointment. I was happy to have him there after the panic and stress of the last one.
Today we were updosed to 50mg/5ml of wheat. So double what we have been doing. Mason handled it great and passed the rest period in the office and we were on our way!
The next step from here, once doubled is 100mg/5ml. This is an amount measurable in SOLIDS, so we will be moving on to Goldfish when we return. GOLDFISH! Do I even need to mention how stoked Carter is that we will have this in the house now?! No more liquid syringe doses. Mason was really nervous to hear this news and I think that may be when he second guesses all of this the most. I may need a small army to escort us for support for that one. (Figuratively of course...because the rooms are small and it's hot in there! I already know some of you are jumping at the chance to come! 😂😂😂 I digress.)
The next appointment is a little iffy on the date though due to Milestone testing at school, and the dr office not having afternoon appointments. So we may be extending doses and updosing at home instead of going to the office in 2 weeks. If that's the case, it will be 4 more weeks until solids (they don't want you switching to solids on your own at home and we are totally good with that.) He will just be getting 200mg in a syringe at that point. Will know more next week about the schedule, either way, next time we go into the office it will be to eat Goldfish.

Getting super thick now. 😳

Gritty and awful but he got it down

Champ

Distracting himself with a reading challenge from school.

1 comment:

  1. Such an amazing journey! A brave boy, our grandson. The encouragement from you and Patrick, really fuels Mason’s motivation! Mom

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