laser treatment

hi everyone!

hope you are all doing well. just wanted to do a quick update on lewis!

from our last MRI, it looks like the “new cyst” (not the craniopharyngioma) resolved - so it’s not there anymore. praise jesus! that is great news. lewis’ original cyst grew 1mm from the last MRI, so it seems to be pretty stable, which is such an answer to prayer. we continue to pray for it to be gone & lewis to be healed.

also, lewis was able to get his infusion last time & his numbers were the best they had been in a long time - wow! that was a nice surprise. behaviorally, lewis has been doing great at his infusion appointments - we have figured out what works best for him. he loves the staff & they love him! it’s great to see. we are going in for another infusion on wednesday, 2/2 - hopefully all goes well!

we would like to ask for prayer for tomorrow morning, monday 1/31. lewis is going to have laser treatment on his right wrist/arm where the accident was. this is to hopefully help it heal in the best way for him to grow with the scars & revise some issues. it sounds like the procedure itself will be straightforward & there is basically no recovery. we are most concerned about the anesthesia he will have to undergo. last time he had anesthesia for his port surgery, lewis developed emergent delirium when he was coming out of it & that was really hard for everyone. please pray against that & for an overall smooth procedure with no complications - thank you!

lewis is scheduled to have a full MRI early next month, & we are also looking to get botox injected into his eyes to help temporarily (or permanently!) relieve his eyes crossing. we just need to the logistics for when they have an opening to get the MRI + injection at the same time. can you pray something within the next three weeks opens up?

we are going to a little town around here for a mini staycation after his infusion wednesday. it will be nice to get out of house & get a change of scenery. we are excited to have some fun!

thank you for praying for us & lifting us up! we are grateful for your support & for how close the lord is to us. hope you have a great week!!

happy new year!

happy 2022! we hope everyone had a wonderful christmas & new year’s & holiday with loved ones.

it’s been another roller coaster of MRIs and infusions — but we do have some good news to share. lewis’ 2nd surgery (the one before thanksgiving) decompressed the cyst a lot (it was almost unrecognizable!) & today, it’s around the same size & has remained fairly stable. we got a quick MRI last week that suggests that the cyst shrunk compared to the time before! that alone is such an answer to prayer. we never could have imagined that his cyst would be this size over a month and a half away from his last surgery. praise god!

however, that last MRI on 1/5 also suggested that there could be a second cyst that has developed near the catheter. the doctors are pretty unsure of what it could be, but it’s possible that it’s something temporary (like fluid) that could go away. we are concerned that it could be an indication that something has gone wrong with the catheter, which would require another surgery to take out. we will continue to watch it. please pray that there is NO new cyst & it is nothing more than some built-up fluid!! that will easily go away & not cause any problems. & that it will be gone at our next MRI, thursday, 1/20 at 9am.

but also, we have been praying that god would drain the cyst out of the brain through the catheter & are hoping that what we are seeing is God in Action!

the second big request for prayer is around lewis’ infusions. he has had 3 infusions so far. his white blood cell count has dropped significantly each time and has prevented us from getting infusions every other week like we’d planned to. our doctor lowered the dosage last time, so please pray that this lower dose allows for his body (specifically his bone marrow) to recuperate faster so that we can continue the medication + that it would shrink/stabilize the cyst. our next infusion is scheduled for friday, 1/21!

and of course, we still pray every day that the cyst and tumor we continue to shrink and disappear entirely! we’ve been given so much hope over these past couple of months, and we are trying to cling to that as we move forward. we are stepping into our inheritance & asking for healing with the authority that god has given us as his children.

thank you for carrying this with us! in turn, you are actually carrying us. we can feel it & are so thankful. we love you all & will keep you posted! may we all have a wonderful rest of this week.

-luke + rachel

kaela mey photography

another mri tomorrow

hi everyone!!

thank you for praying for us! after our first MRI since the last surgery, we finally have some encouraging news to share: we saw the cyst & it was almost unrecognizable! :O wow. it is much smaller than it was before thanks to surgery (and is far smaller than the result of even the first surgery). it hasn’t grown much in those first two weeks post-op either. YAY! praise the lord.

as a result, lewis’ eyes have improved a lot too. his dominant eye switches between his right & left frequently enough that we don’t have to patch, and his eye shakiness is almost entirely gone. no one knew how much of his vision problems would be recoverable even with surgery, so it’s so encouraging to see how much vision he’s been able to gain back.

all this has been such a relief to us, whoohee! we are thankful that is has stabilized for even this short amount of time, we feel like we can finally take a breath - and it has helped us lean into this holiday season even more.

we still continue to ask for our christmas miracle! for full healing & complete shrinkage / disappearance of the cyst/tumor! we have a rapid MRI tomorrow morning & then lewis’ 3rd infusion on wednesday. (P.S. i learned that his medication should be called infusions, not chemo - oops!)

please be praying for us on tuesday morning for the rapid MR & wednesday morning for the infusion session. we are a little worried about lewis’ behavioral reactions after hospital visits. it really upsets him to lean backwards or not be in control of his body especially after these visits. his behavior was much more affected after our last infusion visit, even more than our last hospital stay! so please be praying that we can figure out a good way to communicate to him & that it wouldn’t be causing any behavioral/emotional damage. please reach out to me if you have any ideas of what to do! i think i am going to reach out to an occupational therapist & early intervention, and i should probably try to work in some baby massage.

thank you for supporting us through this wild ride. we are hoping that you are all having a wonderful time enjoying the holiday with family & friends! merry christmas!!!

quick mri tmrw

hello christmas friends!

we have our first post-surgery mri tomorrow morning at 7:45a! please be praying for slow growth & even shrinkage. if necessary, we will drain the cyst on friday when we go in for lewis’ chemo appointment.

thank you!

home sweet home!

hi guys!

we have been having so much fun being back at home that we forgot to update & say: we’re home!!

lewis has been soooo much happier being at home, it’s been great. he is recovering well & back to his old self. his incision looks like it is healing well & his eyes seem to be improving, even if its not as much as we were hoping for. please continue to pray that his incision heals well with no infection + that his eyes continue to improve to 100%!

we were all so happy that we got to come home a whole day early! we got a christmas tree & enjoyed a slow sunday before getting back into things.

we have a week off & then are getting a quick MRI next week to see the state of the cyst/tumor. if it has gotten large enough, we will drain it the next day before a round of chemo. we are hoping to establish some baseline & get a sense of how quickly the cyst is refilling over these next few weeks. please be praying that lewis’ numbers are in a good place for him to receive his next round of chemo (our last round got canceled bc of low #s). & also for all of our emotions that will come with getting new scans & seeing the cyst refill.

between the chemo and the drains, we’re hoping to keep this cyst small for as long as possible. please pray that god would use these methods to do a radical work of healing!

thank you for covering us in prayer this last trip! we felt your prayers. we were sad to see that god did not shrink the cyst before surgery & we barely have the strength to keep asking him to remove the cyst, but we try. hope you all had a wonderful thanksgiving & we love you!

going home

happy thanksgiving, our turkey friends!

we are happy to say that we have been discharged from the hospital & are flying home tomorrow. we made it out of the hospital in time to catch the tail end of our cousin’s thanksgiving dinner! it was such a treat to see loved ones & eat some really good food at the same time. they are just a few blocks away from where we are staying, so honestly there couldn’t be a more perfect set-up. we are very grateful.

unlike last time, lewis’ fluid input/output has been stable ever since surgery, which is a huge blessing and allowed us to be discharged earlier. we are just monitoring his pain levels & his incision healing. he has been such a tough guy & is back to his happy self. he was verrrry happy to get out of the hospital today! since then, we have been at the campus housing & they have been taking great care of us. we are planning on enjoying a walk around the mission bay area tomorrow morning & then heading home.

it is tough to see the incision on lewis’ head. prayer request for now would be that it heals well, fluids stay stable, & no complications with lewis’ recovery. we hope that he has a smooth recovery, even better than last time. his incision healed beautifully last time! we will keep an eye on how he is doing & then restart his chemo treatment this next week when we get home.

we hope you all had a lovely thanksgiving! thank you all for supporting us through this surgery - it has been so exhausting & we are looking forward to getting back home.

day two

happy thanksgiving, everyone!

we were all able to get some good sleep last night - wohoo! today was a lot easier than yesterday. i always forgot how hard the initial recovery is - coming out of sedation, the swelling, everything. we are glad to be past that for now.

we had a great nurse & were lucky to have him for two days in a row. this was a huge blessing! lewis’ numbers have been stable - so great! he is doing so well that we just moved out of the ICU this evening. we are hoping that we will be discharged tomorrow & catch some of our cousin’s thanksgiving dinner. and then fly home early the hen to day. that would be so great!

there was lots of good thanksgiving food that we had in the hospital. we were sad to miss out on getting together with family this year, but we are thankful that we can all three be together. we are also thankful for all of you for continuing to support us during this hard & long season. thank you!! it means more than you’ll ever know.

hope you had a wonderful thanksgiving with you & yours!

we made it

hi team lewis!

we made it. lewis’ neurosurgeon did a great job & was able to successfully drain lewis’ cyst + place the catheter/reservoir. it was a hard day. recovery has been a bit more intense than last time, which caught us off guard. but lewis is such a tough guy! he is hanging in there & was able to eat a HUGE dinner tonight. 

please be praying that his liquid input/output remains stable (that was what kept us in the hospital longer last time) and that he continues to recover well. luke is staying with lewis tonight & please say some extra prayers that they will both get great sleep tonight!

thank you for all the love & support today!

surgery #2 tmrw

hi everyone!

we made it to SF for surgery. the prayer meeting on sunday was a huge blessing to us and gave us such peace + comfort. thank you for those who prayed for us - near & far!

surgery is tomorrow, wednesday 11/24 and starts at 8:30am. it should go until around noon-ish. please continue to pray for a smooth procedure with no complications with good results & a quick, easy recovery after. it’s a similar surgery to the initial drain, except that this time the doctor will leave behind a catheter for easy drains in the future. we hope and pray this catheter will be successfully placed and remain functioning for a long time so that we can keep this cyst under control.

of course, we are still praying & hoping that the lord is healing lewis right now as we speak and that the pre-op MRI tomorrow comes back clear!

we have been encouraged to hear so many stories about healing from others, especially the ones about brain tumors being cured. our friend told us about someone with a brain tumor who they prayed for on a sunday night & had a clear MRI come back the next day! we hold onto these miracles & hope that jesus will it again for lewis.

thank you for praying for & believing this with us!

prayer gathering this sunday

hey friends!!

life is such a whirlwind. lately, we just feel like we can’t catch a break. we just had a scary run-in, where it looked like our medication approval was going to be reversed & denied (again). but, we talked to someone at insurance & they decided to reaffirm their original authorization! PRAISE GOD. a very emotionally exhausting 24 hours, but just happy that nothing in our coverage will be changed. we are waiting to receive written confirmation of the approval again today, please be praying that this approval remains the case & that lewis can continue to get his medication treatment. we are scheduled to go back in tomorrow morning for treatment.

we are going to have a prayer gathering for lewis at bridgetown this sunday, nov. 21st. we would love for you to come! we will be asking for ultimate healing for lewis, that the lord would shrink his tumor & that it would be gone with the first mri he has done in SF. & for lots of other things! if you aren’t available to come, we would still love for you to join with us in prayer at the same time.

sunday, november 21st
1:30pm
bridgetown church
2120 NE Tillamook St.
Portland, OR 97212

we will be meeting in the chapel, masks required.

we ask that you please bring your biggest belief & your biggest prayer energy. we are asking for god’s greatest miracles for his sweet baby boy Lewis.

ivy & gold photography

two surgeries coming up

hi everyone!

this has been a hard week! we were able to start our infusions on wednesday! yay! but also very hard. it is on the cancer/chemo floor. while lewis’ diagnosis isn’t technically a cancer, it is basically considered a cancer that is not cancerous (it doesn’t spread). it has been hard to make that mental adjustment.

lewis was able to start his treatment after they got his IV in after the FIFTH try. those five tries were really horrible! lewis was a very tough guy. after his IV was in, lewis was back to his smiling self. the infusion itself went well, it took around an hour & a half and lewis even fell asleep while he was receiving it. the staff there is incredibly nice, which is great as we will be there every other week for the foreseeable future.

lewis with rosie the therapy dog at his first infusion appointment

we were planning on getting a port put in after a few months of treatment to make sure it went okay/was worth, but we had to move things up. so lewis will be getting surgery to put his port in tomorrow, monday nov 8th. while we have only heard good stories about how much people love their ports, it is hard for us to have another surgery & another scar for lewis. it is going to be hard for us to see the port with him everyday, he is chunky but he is still so little! please be praying that surgery goes perfectly with no complications & a quick recovery. & that luke & i have lots of peace tonight & tomorrow.

our surgery at UCSF is scheduled for wednesday, nov 24th - the day before thanksgiving. lewis will be having a cyst drainage (same as last surgery) + a catheter put in for monthly drainages at home at OHSU. we feel confident with the UCSF team performing the procedure again, it definitely helps knowing how well last time went. it will be tricky for us to learn how to manage the cyst drainage & timing, but we are thankful for our team at OHSU & how they will help us. hopefully, this surgery will relieve the pressure & the catheter + infusions will maintain it & prevent the cyst from creating new symptoms (like his dancing eyes) + further vision loss. we are hopeful that draining the cyst & relieving the pressure will reduce his dancing eyes & increase his vision again, please be praying for this!

our church has been doing a series on the power of the Holy Spirit. today’s sermon was about healing! it was very timely. we are still yearning & begging god to heal lewis by his mighty strength, without medical intervention. we are in the middle of 40 days of prayer for lewis (please join us!), which will end on thanksgiving. it seems like a god thing that our surgery got scheduled the day before the end of the 40 days of prayer. it would be SO amazing for god to heal our precious lewis right before the end of the 40 days. we would just LOVE for the pre-op scans to reveal NO tumor + god’s healing power! please join us in asking for this.

in the meantime, we are planning for our SF trip. like last time, we created a list of meals/things that would bless us while we’re down there if you’d like to support us. we always appreciate these ways of staying connecting. it helps us through the long days, especially we’ll be spending the holiday at the hospital. it’s as close to a hospital visit from you as we’re able to have! :)

great news!

hi! we have some great news to share!!

insurance has approved our medication request for lewis!! wohoo! thank you so much for praying. it feels too good to be true — it sure is nice to get great news every once in a while! this was such a big answer to prayer.

we received verbal confirmation on friday that they approved it - but i had to call back just to hear them say it again because i’m not used to hearing good news anymore! we finally got written confirmation today & we felt up to sharing it with everyone. it’s in writing!! we are very thankful for the kind, thoughtful doctor who overturned the initial denial & all of our doctors who helped us present our case.

we are hoping to start treatment this week, you can pray that that goes through! it will be hard to go in for treatment. i think infusions will take a couple of hours every other week. our first visit will take around 5-6 hours & lewis will have to get an IV every time! and everyone knows how much we love ivs. :) send all the prayers. we are hoping that this medication will prevent lewis’ tumor from growing & that it would eventually start shrinking it! the medication will take a few months to start working, but it is our best hope for a few years until lewis is able to receive other treatment.

we are also hoping to go down to san francisco for another surgery. we need to get this one scheduled & then also approved by insurance. currently it is looking like we could be there for thanksgiving week.

we are pretty anxious about lewis’ eyes getting damaged further while we wait for surgery. he is still cross-eyed & has the dancing eyes. he doesn’t make eye contact like he used to. one good thing is that his dominant eye switched from his left eye to his right - so the vision was good enough in his right eye that his dominant eye could switch. but other than that, we really don’t know much about what he can or can’t see. it is pretty nerve wracking for us & something that we see everyday all day.

we had enjoyed this past halloween weekend! lewis dressed up as a giraffe, deer, skeleton, & pumpkin! we are going all out these days. we hope you had a fun weekend as well with friends + fam!! xo

let's go!

it’s time to go! everyone hop on board, it is time to do this thing called “get insurance to approve the medication” lol.

we submitted our final appeal to the insurance company regarding approval for this medication we are requesting. we should hear back by thursday night at the latest, so pleaaase keep your prayers coming for that to be approved.

we had some encouraging visits with doctors last week - praise the lord! we are so thankful for all of the doctors who have come around us to help us through this time & share their wisdom + expertise. as much as we can be, we are at peace with our plan moving forward. we are just waiting on insurance at this point, so we hope that will move quickly.

it is likely that plan will involve going down to SF again for another surgery. even as we make plans to move forward, we are desperately hoping that god will bring miraculous healing to lewis before this second surgery. if you could please join us in prayer whenever you think, we would love that. we know that it takes a village to take care of everything, and especially for miraculous healing to come through. one of our sweet friends suggested that we start praying for lewis at the time of his birthdate, so we have been praying at 9:28am & 9:28pm. please join us if you’d like!

we are praying for big things to happen. it is scary, because it is always devastating when our prayers aren’t answered the way we like (which is a lot haha). but we pray with full, expectant hearts, ready + willing + scared to take on the disappointment that might come because we know that god’s miracles are bright + big + things we don’t understand. it is a tough race that we all must run, but here we are.

we love you all & thank you for supporting + praying for us! xo

hard news

hi everyone,

we got some hard news last week. we found out that lewis’ cyst has regrown to its original size. we have been really discouraged since hearing this on wednesday, it has been a very hard week for us. if you could please keep us in your prayers, we need all the encouragement, hope, healing, love, & support that we can get. we have some next steps in mind, but are talking to a few more people this week before we move forward.

it is hard, but we continue to hope for healing even in the face of disappointment. we want more of god’s goodness & righteousness in our lives & in lewis’ life.

eye + insurance update

hi everyone!

we got some hard news today. in the past week or so, lewis has developed an eye condition where his eyes jitter (or “dance”) involuntary when he’s looking at things. we saw our eye doctor today and it seems to be untreatable and permanent for the most part, like maybe the jittering can lessen but it will still be there. we don’t know all the details, but it is disheartening to hear.

we are also dealing with some insurance problems. we were supposed to start a new medication at the beginning of the month, but we have had appointments get pushed back two times due to insurance coverage. insurance is looking at it this week & we are supposed to have an answer regarding coverage by the end of this week. PLEASE be praying for coverage! we are wanting to do a treatment that will prevent his cyst from growing and will hopefully shrink it. it is one of the only things we can do outside of the surgery, which we are trying to wait until he is older to do.

i started reading a book on healing, and how it can & should be an ordinary experience to experience god’s extraordinary power. this is something that i would love to see for lewis! if you could please be praying for god to heal him in so many ways.

please be praying for this insurance & his new eye development. please please! & please be thinking of us this week & shoot us a text or anything to encourage when you do, we would love it!

thank you all for the support! xo

somebody turned one!

hi everyone!

someone turned one this past week and we have had a LOT of fun celebrating! we are being pretty extra & going all out in our celebrations, it is like a double celebration for us in a way - we are so happy that our baby boy is ONE! & that we are done with surgery & at home. we weren’t sure if we would be home or if lewis would be feeling well enough for a first birthday party, so we were extra glad that he was.

lewis has been recovering well. his eyes are continuing to improve, we are doing the eye patch for two hours everyday, & that with the surgery has helped his eyes improve. please pray for continued improvement in his eyes!

lewis will also be starting medication this week to hopefully reduce the size of his tumor, or at least keep it from growing bigger. we will be dealing with unknowns with this medication & a lot of time at the hospital, so please be praying for good results, comfort, no bad side effects, that lewis does okay at the hospital, & all the other things.

to get started with treatment, we have to do some tests this week to establish his baseline, including a quick MRI. this will be the first MRI post-surgery, so we have all sorts of feels - hope / fear/ anxiety / we feel it all. if you could be please praying for us & that god would show his healing power through the size of the cyst on the scans we would appreciate that so much!

thank you to everyone for showering us with love when we got home & for all the birthday love that you showed us & lewis this past week. it’s been so exciting to celebrate his one year, but also pretty hard to look back & see all the pains that happened - we are some place i never ever imaged we could be.

some things are weird. just the other day we got rid of a bag of potatoes that we have had since before lewis was diagnosed. we were going to cook them the day that we ended up having to go into the hospital & found his tumor. and the other day we just finished his thing of baby wipes that they gave us when we were at the hospital in SF. all of these time markers hit me weird, i’m not really sure what it is - i think it’s just something to do with how life continues to go on even when devastating things like this happen — which i am thankful for, but also kind of can’t believe.

anyways! lewis is also back to exercising his strong-willed nature (he is truly my son lol) and i am a little worried about our hospital visit this week, so if you could say another prayer that he would be comfortable & understanding at the hospital, everyone involved will appreciate that!

thank you so much for your prayers & thinking of us! we are thankful for this community and are praying god’s peace & love over all of you as well.

back at home!

wow! we are so happy to be back at home — and lewis is especially happy!! he has been busy doing all his favorite things: crawling around the house like nobody’s business, eating so many solid foods, and dancing along to music.

we got back home on sunday afternoon. great flight home! lewis slept the whole way in my lap & woke up ten minutes before we landed. our little perfect boy! we were so blessed to have seen family & friends who took GREAT care of us while we were in SF, we feel so lucky & grateful for how they supported us.

it seems like lewis is dealing with the opposite of diabetes insipidus, where he isn’t peeing enough. we are going to get his levels checked tomorrow, but since he still has some lingering cold symptoms, we have to get another negative covid test (he has had 3 in the past 11 days) so we can be allowed in the hospital. covid has been making everything so much harder.

other than that, lewis is in good shape & in good spirits. he is pretty much sleeping through the night again & is his normal, happy self. we are still waiting for his eye to get better. the doctor said that it will take up to 4 weeks for us to know if the procedure relieved any optic pressure for lewis. in the meantime, we are patching his right eye for at least an hour everyday so he can maintain his vision in that eye.

things have kind of turned into a waiting game, which is what i think a lot of this journey will feel like. we are having a hard time celebrating us completing his first procedure or the first step, because it feels like we are waiting for the other shoe to fall. there are so many things we can only hope for, but we are just waiting until symptoms get bad enough that we have to do something - like if his optic nerve still doesn’t improve after the procedure or if the cyst starts regrowing. i know we should be celebrating making that first step towards healing or at least deciding on a care plan & team — we are thankful for are those things, but it doesn’t feel like we can step back and take a breath yet. but we will, eventually.

if you could pray that we could feel god’s hope in the next bit, we would be very thankful. i think that we both felt god’s peace during these past few weeks, we are very grateful for that. we are so thankful for the community, all of you, that have risen up around us to carry us through this in the past week - so very thankful. i could use a bit more of god’s hope to hang on to.

our prayer request is still for complete healing of lewis’ body - the healing of the new incision, his diabetes insipidus to fully resolve, the tumor & cyst to shrink, for pituitary restoration, for his optic nerve to be relieved & vision to be corrected, & everything else.

thank you so much for praying that with us, and for all the gifts, encouragements, cards, generosity, and love!

recovery

hi everyone!

thank you all of your prayers, texts, & messages that you sent us these past few days - they each mean so much to us & we are so thankful!! we feel so supported & not alone through all of this.

yesterday had some complications, but overall went well. the cyst did not pop on the first go around, so they were almost done with the procedure when they realized that - but they were able to go back in while lewis was still sedated & puncture the cyst wall with something more pointed. that was very stressful for us, faced with the possibility that the goal for this procedure couldn’t be obtained… VERY stressful & considering our options and what that would mean going forward. but god really showed up in that final hour and helped the procedure go successfully & overall smooth.

we are currently in the ICU for lewis’ recovery. there was a small chance of him developing diabetes insipidus, a hormonal condition that can be triggered where it is difficult to maintain hydration levels (ie. too much/too little peeing & being thirsty). unfortunately, lewis has developed this. please be praying that is just temporary & will resolve itself within the next few hours. we will stay longer in the ICU so they can closely monitor these symptoms.

he had some sudden swelling after we go to our room yesterday, which was scary, but it has gone down & seems to be doing better.

recovery is HARD. it is hard to see our little boy being so tough. he isn’t getting much sleep as they have to check his vitals every few hours (he is currently napping now - yay!). we brought a LOT of toys from home & it has made his room a lot brighter, along with a balloon & cards from friends. they also brought out a play mat for lewis to sit on, we just have to manage all the cords that he is connected to while he is moving around.

thank you for supporting us & please continue to pray for our sweet little boy as he recovers. for swelling to stay down, his diabetes insipidus to resolve, his optic nerve to relieve itself, & for great healing for everything else. we love you all! xo

surgery tomorrow

our first surgery for lewis’ craniopharyngioma is tomorrow morning, wednesday september 1st. we arrive at 6:30 & surgery starts at 8:30am. it should be done around 1pm or so. please be praying for god’s miracles!, our surgeon + team to be super blessed with god’s presence, everything to go better than expected, & a smooth recovery for our sweet little boy. thank you for lifting us up during this time, we are very thankful.

last minute concerns

hi everyone on Team Lewis!

we are coming in hot with some prayer requests. :) lewis woke up with a runny nose today, which sent me into a spiral of anxiety. fortunately, lewis can still have surgery with a runny nose, as long as he doesn’t have covid! we are getting a covid test tmrw evening (hopefully we can sneak one in earlier) and hopefully it will be negative & we can have some peace of mind. & we hope it doesn’t develop into something worse.

it’s things like getting a runny nose a week before his brain surgery that send me to the depths of despair (along with his initial diagnosis at 10 months, his arm mishap….). and then luke and i were really not communicating earlier this week, plus some other smaller things with that just made me feel like that things were really not going our way. i was starting to believe that things haven’t gone our way since this journey really got going in the middle of july, and if there is a chance for things to go wrong, they will with us. i didn’t realize i believed that, until i almost said that out loud to our neurosurgeon today.

but then i came here to ask for everyone’s prayers for protection & support, and to update y’all with what’s happened since last time and i realized that there are so many good things that i am not paying enough attention to:

• surgery got pre-authorized by insurance

• we were super blessed with housing in a dream location, within walking distance to the hospital & a dream in-person support team

• great meeting with lewis’ neurosurgeon today whose approach totally aligns with ours, we feel so confident in him & great about our procedure

• arm is still healing, but looking better

• our friend taught us how to use infant massage to relax lewis (for in the hospital)

• we have met with people who experienced god’s healing & have prayed over lewis

• we are so well supported in every possible way, it’s insane - by the people we are closest to & the people we would least it expect it, we are so thankful

so after looking at that list, i know that “if there’s a chance for things to go wrong, they will” is a lie that i believe. it is an easy lie to fall for & one that takes a lot of effort for me to fight off consistently. so, please pray that luke & i can fight it and hold onto the goodness of god. please pray for more protection over us from any more lies, protection over our health & that we can make it to surgery, through surgery, & out of surgery in good emotional/physical/all-sorts-of health. and prayers that lewis’ runny nose goes away, symptoms don’t get worse or develop, and that he is covid negative! we are so close to surgery, but i am also just one step away from losing my mind about anything going wrong lol. thank you all for praying for us.

in other news, lewis is developing SO quickly & learning so much so fast! on monday he started pulling himself up to stand. & yesterday, he started crawling on his knees & he learned how to sit down from standing. he has also started waving & is really into dancing with his arms. he also loves kissing the bunnies in the book we read every night & today he kissed the bears for the first time. our sweet little boy is learning so quickly. he is going to be 11 months this saturday! i can’t snuggle him enough.

thank you so much for thinking of us & all your prayers! it truly means the world to us. we love you so much!

from our goumi kids photoshoot - we LOVE the goumi team & they love lewis!