A lot of our fears were relieved when we spoke to an expert from the PKU Clinic at UW. She has been looking at Grace's reports and has worked in this specialized field for over 20 years. She told us several things to keep in mind:
1. Don't worry. Our baby is perfectly fine--enjoy her!
2. Her levels are very low and have remained low. We can continue feeding her as we are!
3. Best case scenario: Her level of 3 declines over time. 2nd best case scenario: Her levels stay at 3 and she just may not be able to eat as much protein as the average person. Other possibilities: Her levels may go up as she starts to eat solids...we'll just have to keep an eye on her levels in the years to come.
4. More tests are being examined--we'll know more specifics in the weeks to come. We will probably go to Seattle to meet with the people at the PKU Clinic sometime after that.
Thank you all so much for your prayers. We really do think that this could all disappear with time, but know that if it doesn't disappear it is definitely manageable.
On a fun note, the lab at Sacred Heart felt badly that she had to go in twice on Thursday for different tests--blood draw, foot prick, urine sample--so they called us yesterday and said they had a little present for her because she did so well (she almost fell asleep during the blood draw!). Jeff stopped by the lab and came home with a teddy bear that is twice her size! She's pretty amazing! :) -LE
1 comment:
So happy to read this update and for the peace of mind this must have added to you all. Love, Heather
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