Well, it has been another busy week for the Frazier Frontier, we left on Monday to check into the “kid hotel” as Novella calls it, (the Ronald McDonald House {rmh}) we checked in, and spent the afternoon playing, and catching up with our rmh family.

Tuesday we got up early (Aveline, Novella and I were up at 5am!) and headed over to Children’s around 7:30. Aveline got checked in, got vitals and they took her back for her Brain MRI. We went down to a little cafe for breakfast with Novella, then dropped her off at sibling care, and went to sit with Aveline while she woke up. She woke up super loopy, but happy. It was a super silly side of her while she tried to blow kisses to the nurses while she could hardly sit up! Lol she is super funny on meds we have learned over the past few months! She was discharged and we got to go pick up Novella.

You would never know that Aveline had been sedated and doped up on loopy sleepy meds. We headed back to the rmh, and our friends Ms. Stacy, Caroline, Eleanor and Charlotte, had just arrived and visited with us, played and had lunch together. We had such a fun time, as we always do! Also two of our favorite therapy dogs came that day as well, so that of course was a much enjoyed part of the day as well!

Wednesday we got up and played for the morning, went over to Children’s visited the gift shop and found some shirts, and balloons for the girls. Grabbed a bite at subway, then headed to our three hour appointment with the feeding team, we left feeling confident about their plan and ideas for her. We headed back to the house and ate a bite and played played, then got to go to movie night and late bed.

Got up on Thursday morning, cleaned, packed, checked out and hit the road. We are home now, and I spent the afternoon on the phone while Ryan entertained the girls. So here is the run down of everything we found out this week with our appointments….

Avelines brain MRI came back normal with no abnormalities! Yaaayyy! But boo in the same breath, because still no answers, but we can check more off the list, so that is good. She does have a small cyst in the middle of the brain but it is benign and should not grow or be an issue ever. We got a referral to genetics as the next step in discovery for her healthcare. We have heard that the waitlist is long so we may have to wait until we get moved to get in to see them. They are not happy that the small ankle braces are not correcting the problem, so she has a new script in to get the braces that go up her calves. We should get the call to schedule casting in the next few days.

As far as feeding, she gained TOO much weight, so we get to back off of pushing so many calories through her tube. We are also starting a new medicine called, cyproheptadine that should help her with stomach compliance and hunger. The hope is that we can pump her feeds in at a faster rate and that she will be hungrier so she will try to eat more table foods. So all in all lots of good and encouraging news and help. We will just keep trekking forward! Our doctors are fantastic, and working to help us to find doctors in the Seattle, WA area. They have reassured us that the doctors are suburb in that area and that we will be in great hands!

She is one brave little girl! We are so grateful for answered prayers, and God carrying us through this journey.