hello friends!

we can’t believe it’s been almost three months since Lewis’ last mri, and over half a year since his surgery! time is flying & we are loving every minute. emmett is a constant reminder of how much time has gone by, he has two teeth & is back-up scooting around our house everywhere - crawling is just around the corner.

every day since Lewis’ surgery has been such a blessing & it’s hard to remember the weight we carried with us before surgery. we were reading through our pre-op notes and WOW, so painful. there was so many heavy, dark unknowns that were on the table & it is so crazy that we don’t have to face those things anymore. praise god!

our amazing surgeon, Dr. Fernandez-Miranda posted the sweetest instagram post at the end of the year that made me cry buckets. (warning: last slide of his post has actual brain surgery footage). it is incredibly meaningful to know that Lewis’ case was significant to our surgeon. one of our greatest hopes is that Lewis’ experience & surgery will help & inspire other young kids who are diagnosed with craniopharygiomas.

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A post shared by Juan Fernandez-Miranda MD (@dr.jfm)

our story was also featured on the Candlelighter’s blog + mailer recently. Candlelighters is a national organization with a local chapter that we’ve been involved with. they provided financial assistance for us and have thrown lots of fun activities for Lewis to go, like the pumpkin patch & OMSI visits. you can check them out + support them here!

we also were able to share our testimony on stage at our church in october. it was surreal & meant a lot to celebrate God’s miracle with everyone. Lewis got to tell the whole church his “brain tumor was out!” one of our worship leaders wrote a song inspired by when she prayed for Lewis’ healing, & it was so special to sing that after we shared. it’s one of Lewis’ favorite songs now!

we have been working the past few months to get Lewis on growth hormone and we finally received the medication today. this is a big deal! we have also known that Lewis will need growth hormone supplement, but we were not able to start giving him this until after surgery. he basically hasn’t grown for over a year, so he definitely needs this, but we are just as nervous as we are excited. we are nervous about the weekly shot — the shot takes more than minute to give, like it has to be injected under the skin for more than a full minute. it will be painful & hard for Lewis to get used to. he is excited to start growing, but we are worried about how hard this will be every week & about any potential pain/side effects he might experience from the shot.

some praises we’d like to share: while it took us a long time to coordinate doses/pharmacy/payment, we did not have to battle with insurance to get this med eligible for coverage, we are eligible to receive financial assistance for this, and we were able to get on the weekly shot, rather than the daily shot. yay!

we have a busy week ahead: an eye appointment on monday, an MRI + follow-up appt on wednesday, and his first growth hormone shot on thursday!

here are our prayer requests:

8 month post surgery MRI on 2/7: Lewis goes in at 7:30am and he “does not want to do this”. we will speak with our neuro-oncologist right after to go over the scans. we know Lewis has been healed, but it is still nerve wracking every time he have to take a look inside. please be praying for clear scans once again! also, Lewis has a runny nose + cough that need to be completely gone by tues in order for this not to get rescheduled.
growth hormone: we are giving Lewis his first shot on 2/8 at 5pm. please pray this is a good experience for him & an easy adjustment with no side effects. when he was a baby, he wouldn’t even cry or flinch when they accessed his port, but now he’s very bothered by needles (understandably!).

thank you for following along with us & for your prayers! we are so grateful.