a couple days ago, i posted to instagram sharing our daily “schedule” during this interesting time we are living in. surprisingly, i got a lot of responses and “thanks” for sharing what is working in our home. i thought it might be best to let this live on the internet forever on the blog. nothing directly brady related or down syndrome related, but related to CAMPIRR life these days…
full disclosure, we do not follow this strictly. sometimes the tv time category is doubled or tripled in any given day (keeping real people), but this gives us/me a good framework to keep things interesting and different when we are stuck within the four walls of our homes and yards. also, if you have toddlers, you know how laughable a “schedule of activities” really is… unless you see them at school, and then you wonder, “how do they get him to sit still and listen like that?” i swear they must put something in the water 😉
please leave a comment with other fun activities that are a hit with your kids! we are always looking for something new to incorporate into the day to break up the monotony!
another LONG overdue post. brady is officially 13 months old, so what better time than now to share his nursery ha!
brady’s room was one of the very first rooms completed in our new home when we moved to georgia. it was a fun project and labor of love (just ask my mom how the wallpaper hanging went)! i am incredibly proud of it and really feel like this room can grow with him for years to come.
my inspiration was this dresser from crate and kids, but in an effort to not break the bank, i refinished an ikea dresser and the room just blossomed from there. listen, don’t get me wrong, i like expensive things. i do. i have a knack of picking the more expensive option if given the choice between two similar items. however, i LOVE a good deal and getting the same look for less and spend where it makes the most sense.
note: the curtains are a dark, deep green not black (it’s hard to get the true color in the pictures).
if you care to know where things are from, i added sources at the end of the post.
here are some cute little details around his room. ps i couldn’t let his adorable helmet go to waste! good thing it matched the color scheme perfectly!
in typical fashion, i have neglected the blog posts. between mike’s travel schedule, brady’s appointments, landon’s most epic 4 month long sleep regression, and the holidays, i just couldn’t get myself to stay up to write posts. not kidding, we were going to sleep at 9 every night….
here i am at 7:30 pm writing brady’s one year update almost a month late. whoop whoop!
first, let’s just get this out of the way – BRADY IS ONE YEAR OLD. how????? i don’t know, but mike would say it’s felt every bit of one year, ha!
in the last few months, brady has changed a lot. physically, he has gone from just starting to push up to sitting, to CONSTANTLY pushing up to sitting. it’s both adorable and frustrating when you are trying to change diapers, get him dressed or work on trying to crawl. the kid wants nothing to do with being on his tummy anymore! he’s started to army crawl and can pretty much get anywhere he wants to go with a lot of rolling involved!
if you follow us on instagram, then you know the rollercoaster that is brady’s feeding journey. brady has feeding therapy once a week and it’s by far our biggest challenge. we take a few steps forward and a few back. feeding is more challenging to see progress and sometimes this momma needs that progress to keep it up. however, he has definitely made progress in the last few months. brady is moving on from purees to soft solids. he’s showing interest and is not gagging or choking as often as he was before. this is huge! i pray he can continue to make strides in the right direction with this all.
speech is also a major challenge for brady. speech therapy is something that will be in his life forever. brady is not babbling much and does not have any words just yet, but he’s vocal, loves to “talk” and makes his voice heard when he wants to.
in other news, i officially sent in brady’s katie beckett (medicaid) application and we are praying and praying for an approval soon. we hit a small bump in the road and the medical review team requested more paperwork. our hope is the updated paperwork is the final piece to the puzzle and we can get an approval! this is incredible important for this calendar year because the number of therapy visits brady gets per year, will not be enough. after those visits are used, it will be up to us to pay for everything totally out-of-pocket. with katie beckett, medicaid will take over those overages when we reach our private insurance limit.
i’m back with another gift guide, this time with ideas of what to buy for the young babies and toddlers that are both fun, but also strategic. i say strategic because they are fun enough that they won’t know they are actually working on their fine motor or gross motor development. most of these are based off of recommendations from our PT and OT…
fisher price laugh & learn piggy bank: i will start by saying, we do not have this (yet), but brady AND landon love to play with it when our OT comes to the house. there are two versions and this is the one she recommends most. the reason being is that this one is less complicated for the littlest of hands and minds, yet open ended enough that it will grow with your baby into toddlerhood. initially you are developing fine motor skills and an understanding of cause and effect. then as they master entering the coins into the piggy bank, you can work on counting, color matching, sorting, etc. see how it can work for years with your kids?
fisher price sit-me-up: we have this one in the owl theme for brady and it has been my new favorite seat. this seat isn’t as long lasting BUT it works early when you are working on head and neck control. ever have the baby that is sick of tummy time or lying on their back, yet can sit totally unsupported? we did! and i wish we had it with landon too. it’s more supportive, comfortable and entertaining for the babes!
kinetic sand: i love the idea of a sensory bin, yet hate the idea of the clean up and managing that comes with it until they learn the “rules.” if you want to start easy, this one is a good option. kinetic sand is a breeze to clean up, fun to play with, and provides tons of sensory input. landon can sit and roll balls or make shapes without much need for intervention. most of the time i plop a gathre mat under the bin just in case, but 99% of the time i can easily clean up the spilt chunks off the carpet.
peg board: this one is another OT favorite for fine motor development and open ended toy. this is a great tool for brady at the current moment in his development, but it’s a fun toy for landon too. he loves building the towers with the pegs and doesn’t know he is actually mastering some fine motor skills without knowing it.
the nugget: before i get started on this one, let me preface this with saying you will NOT have it in time for christmas. the demand is so high right now and they are completely out-of-stock. we are still waiting to snag one (i should have ordered it a month ago, but hesitated because i didn’t want to store it for that long and now i am kicking myself. as soon as it is back in stock, you better believe this is coming to our house. this is the big gift for both boys. why? for brady, he needs different surfaces to encourage crawling and to help with that gross motor development. for landon, he LOVES to crash and burn. now he can have a safe place to do it. this will grow with them for YEARS. forts, imaginative play, jungle gym, flips, etc. and when not in play time use, it’s a couch for reading, movies, homework and more. catch my drift here? we cannot wait to have this!
i get messages all the time asking where i found this or that. or saying, “wow, that’s something i could really use!” so i thought, why not share with you my most used and loved items as gift guides. with black friday around the corner, it’s the perfect time to pick up a few gifts for the ones you love. full disclosure, i do not get paid for any of this, just sharing things i love, use daily and truly believe in.
let’s start with 5 gifts for the expectant mom. my hope is that you might find something for an expectant mom or new mom that she might not have thought of before!
gathre mat: if you follow my instagram then you know i am pretty obsessed with these. we have one in the car for on the go, two for under the high chair or playing with messy things in the playroom, and one that can double as both a placemat or changing mat. the mats are made of bonded leather, fold pretty small, wipe clean with soap and water, and are BEAUTIFUL. wins all around. use at the park, under painting, playdough, kids eating, etc. the uses are endless! their black friday sale is live now until 11/25 so GO NOW!
summer infant my bath seat: okay, this is a recent purchase of mine. when mike is traveling and i am solo with both kids for nighttime routine, this is my lifesaver. i can bathe both boys at the same time (which they love) and not be a nervous wreck about someone getting hurt while in the tub. it’s also perfect for the kiddos that are not quite stable enough to sit in the tub solo but has outgrown the baby bath tub. scoop one up at buybuybaby with a 20% off coupon!
lou lou and company: anything from here is amazing! our BIL and SIL gifted brady with the sweetest blanket, newborn gown, hat and mittens. the fabric is like BUTTER. it was by far one of my favorite things to put him in during those early weeks. and the hat actually fit his tiny head! mittens that actually stay on are hard to find and these were so cozy and did the job. they have new deals daily for black friday, so sign up for their emails!
hatch baby rest +: this is a game changer. sound machine, okay to wake light, night light, clock AND audio monitor in one. that’s crazy! we have original model and i wish we had the plus so we could get rid of one more gadget in landon’s room. the custom colors and sounds are awesome. landon is also waiting until his light turns green to get out of his bed which is a major win these days.
hatch baby grow: i know i said the hatch baby rest is a game changer, but so is the hatch baby grow. with a new baby comes the pressure to gain weight. it doesn’t matter how you choose to feed your baby, pediatricians want to see that number on the scale go up. enter the need for the hatch baby grow. skip the co-pay and germy doctor office for a weight check and do it at home with this changing pad/scale all in one. for the nursing moms, you can do “weighted feeds” to track how many ounces they are taking at the breast. that is HUGE. no more renting a scale from the hospital or seeing LC for weighted feeds, you can now do it all in the comfort of your home. bonus, the changing pad is wipe clean (hello less laundry). the app that accompanies the scale is great for tracking feeds, diapers, weight, naps, etc. and easily shared between you and your partner. i wish i had this with landon.
my other online/holiday shopping tip – use Rakuten (formerly ebates). i do all of my online shopping through Rakuten and earn cash back on things i am already buying. they send your cash back through paypal quarterly. it’s legit and money back on stuff i was already buying.
questions about any of these products? leave a comment or come visit my instagram to see them in use.
up next – holiday gift guide for the developing baby
brady is officially eight months old (plus eleven days, because life) and i am starting to freak out. we are closer to him turning one than him being born and it’s really starting to hit me. this month was a big one in some ways (heart surgery), but also a slow one because we were waiting for surgery, had surgery and were recovering from surgery.
brady started sitting up unsupported (he still splats occasionally) and more importantly, he had his heart repaired!!!! he has a WHOLE heart and my heart couldn’t be happier for him.
heart surgery was a big hurdle and one we are happy to have behind us. i can’t wait to share that story with you soon. brady rocked it and rebounded even stronger than he was before.
during this month, brady found his feet and cannot stop playing with them all the time. it might be the cutest thing ever. he also expanded his solids palate and likes mostly everything. we should have feeding therapy set up within the next month and see how he continues to progress in the solids world.
landon and brady continue to be best buds. seeing landon love on brady and miss him when he’s napping is the sweetest. to think i was so worried about their bond before brady was born…. silly me.
the biggest milestone for me during brady’s eighth month…i stopped pumping so much. heck yes!! stay tuned for more of this in his nine month update.
hey y’all. i’m back. after a 2ish month hiatus from the blog (aka summer break), i thought it was time to give it some love. this post is all about months 5, 6 and 7 – the months i am calling the waiting months. the months we spent waiting for brady’s heart surgery to come, attempting to keep him healthy, failing at that, getting surgery postponed 9 more weeks, struggling with bottles, feeding and weight gain, and finally ending with surgery (and summer).
month 5: brady celebrated landon’s second birthday and my first mother’s day with my two nuggets. he started giggling more, smiling with his entire body and getting stronger and stronger in PT. we took his first trip to the beach (and really first trip anywhere). we attempted to keep him healthy and ready for surgery that lingered just on the horizon. month 5 was a big one, but we knew (or thought) month 6 would be even bigger.
month 6: heart surgery month. not exactly. i know i mentioned it on instagram, but we were prepped and ready for brady’s surgery. we planned a last minute baptism, attempting to fit it into the schedule with most of our family. we had family lined up to come in town and help with landon while we would be in the hopsital with brady. then boom, no surgery. i knew brady had caught a cold the week before. i was emailing with his cardiologist wondering if i needed to speak up to the surgical team or not. we decided to wait it out and see if his body could clear it before surgery. no dice. one nose swab test later and positive for rhino/entrovirus. no surgery. what we thought would be a 6 week bump, turned into 9 weeks thanks to school aged kids planning elective surgeries during the summer months. after this, we decided we wanted to live a little bit. we continued to struggle with bottles, so one day we tried to nurse and he took to it! we went from exclusively bottle-feeding/pumping to nursing after a 5.5 month struggle. things were looking up a bit, until we learned he was not gaining weight. between brady’s heart condition and the calories he burned nursing, he just couldn’t keep the weight on. back to bottles….
month 7: living a little bit meant we were finally going to take the trip this summer that we missed out on before surgery. so we went to connecticut to visit mike’s family, have brady meet one of his great-grandmas and his great-aunts. he took his first plunge in the pool and officially became a rolypoly. he would literally roll straight across a room if you put him down! we also started brady on solids! month 7 was a big month for him. solids started off okay, he pushed out more than he was taking in, but he didn’t hate it which was huge! brady also finally got fitted for his helmet to correct his plagiocephaly (this will be a separate post) and took to it just fine. it’s a little hot and sweaty in the georgia heat, but like everything else he encounters, just smiled his whole way through it. he looks cute as ever in his helmet too. as we continued to live life and move through more weeks of waiting, brady continued to get stronger. he started to prop sit and impressed his pediatrician with where he was at developmentally.
month 8 update is just around the corner! this little bug of ours is truly amazing and continues to surprise us with his strength, love and smiles everyday!
i distinctly remember my mom telling me this. i was in college and my grandparents had been in the hospital (separate occasions). i remember all the things she said about them missing medications, doctors and nurses not reading notes or the charts thoroughly. i remember her saying she (and my aunt) had to tell THEM what was going on and correct their mistakes. i kept thinking, “wow. can it really be that bad?” and “how scary? i am glad they have you to be there with them.”
fast forward to today and i can 100% understand the “you have to be your own doctor” sentiment. to the best of my ability, i have to the biggest advocate for my children. i know this. i do this already in a number of ways, but preparing for brady’s heart surgery was the first time i had to really “fight for him.”
the healthcare system is all kinds of messed up. not getting into politics here because it really doesn’t have much to do with that. but i really think a lot of people don’t understand that you have choices. you don’t have to take what the doctor, nurse, scheduler or insurance company says as “fact.” truthfully, you shouldn’t. you should question them, research things on your, present your findings if they differ from your doctor’s perspective, request second opinions, etc. when it makes sense.
you should feel 100% confident in your doctor’s plans, approach, care, etc. we were NOT feeling this way after meeting with brady’s cardiothoracic (CT) surgeon for our consult. i will get to why in little bit, but i want to ask you a few questions first:
if you, or your child, needed surgery, would you feel comfortable waiting until pre-op day to meet the surgeon? (note: pre-op is generally the day before surgery)
if while performing the surgery, the surgeon had to remove a part of your (or your child’s) anatomy considered “non-essential” to successfully complete the surgery, would you want to know? or do you need to know?
noodle on these questions as i tell you our story and experience advocating for what we believe is best for brady and his health as it pertains to his heart surgery.
our cardiologist gave us the heads up – brady’s case had been reviewed and deemed ready/necessary to have surgery. we should be hearing from the scheduler to get something on the books in the coming months (this was april). right on cue, the scheduler calls to get brady’s heart surgery scheduled. i had done some research on the 3 CT surgeons at CHOA and had my heart set on one of them, but would have been comfortable with 2 of the 3. of course, as our luck would have it, we can only be scheduled with the one CT surgeon i know least about – dr. shaw. here is how that conversation went:
“are all of the dates you offered to us with dr. shaw?”
“are dr. kanter or dr. subi available at all?”
“okay then. looks like we are going to have to go with dr. shaw.”
“great.” (lots of details said) “you will get to meet with dr. shaw on brady’s pre-op day to have any questions you might have answered. since brady’s surgery is on a monday, his pre-op day will be on the friday before. if his surgery date changes, his new pre-op will be the day before surgery.”
i’m sorry. HOLD THE PHONE. you want me to ask any questions i might have for the surgeon on the DAY BEFORE my son’s open heart surgery?? no. that’s not how this is going to work. it will NOT work for me. honestly, how could it work for anyone? if we are not comfortable with the surgeon, we need to have time to find one. the day before surgery does not give us enough time to adequately prepare and feel comfortable. back to the conversation.
“meeting with dr. shaw the day before surgery will not work for me. can we schedule a consultation with him as soon as possible?”
scheduler says, “oh yes of course! you can meet with him whenever you want. he does all consultations on tuesdays. let me pull up his schedule to see when we have his next available.”
why would they not offer this information to everyone? why do i have to ask? i can’t possibly be the only parent who feels this way, yet i bet most parents take the “day before” option because it’s the only thing mentioned or offered. this is one example of how the healthcare system is flawed.
side story: one of the many ways the down syndrome diagnosis network supports parents is with facebook groups specific to your child’s needs. enter in the most valuable group to date – DSDN heart heroes. this facebook support group is only for parents of children with down syndrome and a heart defect. i had just seen a post from another mom asking for good questions to ask your baby’s CT surgeon. i read the thread and hundreds of comments. one comment kept popping up on the post “ask the surgeon to keep the thymus.” i took anatomy in high school. i have no idea what the thymus is or what it does. so i google. here is what you need to know (Wikipedia explains it best:
the thymus is a specialized primary lymphoid organ of the immune system. Within the thymus, T cells mature. T cells are critical to the adaptive immune system, where the body adapts specifically to foreign invaders. … the thymus is largest and most active during the neonatal and pre-adolescent periods. by the early teens, the thymus begins to atrophy and thymic stroma is mostly replaced by adipose (fat) tissue.
sounds pretty important to me. especially with brady already having a weaker immune system. of course we want the surgeon to keep his thymus. duh! so glad i saw this and looked it up.
fast-forward a couple weeks later and we are at the consultation appointment with brady’s surgeon. i was armed with questions, but the most important question “can you leave his thymus?” dr. shaw plainly states, “i routinely remove it. in order for me to get the best view on the heart, i need to remove it.” we asked if he could leave part of it and he said he would “try.” red flag.
within 24 hours, we pretty much decided this guy was not going to be brady’s surgeon. i had read a hundred of parental anecdotes stating their child still has some or all of their thymus. they found surgeons who were skilled enough to keep it, so we would too. in the meantime, we had to do more research. we wanted to know if we were being crazy in wanting to fight for keeping his thymus. was there research to support its importance? do the other surgeons in atlanta practice the same way?
so it began. the research. the back-and-forth. the “fighting.” research will tell you just what wikipedia did. it will say that once removed, your body’s immune system basically compensates for the loss of the thymus (thus it being “non-essential”). however, there is no research on this topic specific to the down syndrome community. for us, if it is possible to be kept, then we want it kept. we called two different adult cardiologists for 2nd and 3rd opinions. called our own cardiologist and explained to him that we were not happy with dr. shaw’s answers or confident in his ability to perform the surgery the way we wanted it done. i explained to him that there were mothers in atlanta who had their child’s surgery done here and the thymus was left 100% intact. how could they have it done, but we couldn’t? someone was lying to us – the surgeon or these parents. we told our cardiologist, if it’s not done the way we want, then we are willing to travel to another facility to find a surgeon who can. end of rant.
our cardiologist is amazing. he came from boston children’s – the number 2 hospital in the US for pediatric cardiology & heart surgery. he called old colleagues, spoke to every surgeon in atlanta, reviewed cases claiming to have the thymus kept, reviewed research on the importance of the thymus and the immune system. within 48 hours of our complaint, we had all the answers.
it is standard practice to remove partial or all of the thymus during open heart surgery. this is what surgeons in boston, atlanta, texas, etc. all subscribe to.
it is important for immune development and should be kept intact as much as possible, especially for brady.
our surgeon is capable of performing a partial thymectomy and will do so. it is in his notes, it has been said face-to-face to us and our cardiologist. they understand we are not messing around about this.
at the end of all of this, we felt the confidence we needed to feel in dr. shaw to move forward as planned for brady’s surgery. we won our battle. but this brings me back to my second question:
if while performing the surgery, the surgeon had to remove a part of your (or your child’s) anatomy considered “non-essential” to successfully complete the surgery, would you want to know? or do you need to know?
the answer to this question should be yes. but what i have learned in my experience is that it is actually no.
if we didn’t specifically ask about the thymus, no one would have mentioned to us that they remove it. they don’t mention it even after surgery. the CT surgeon’s goal is to successfully repair the heart, so they don’t talk about the thymus. this is why parents think their child has their thymus. parents think that because the surgeon never mentioned the removal of anything, it must still be there. wrong.
after messaging with a few other moms, they were horrified to learn when they went back to the surgical notes and records that their child’s thymus was removed. they had NO idea. a few of these moms don’t have to worry about the immune issues because their kids don’t have down syndrome, but it would still haunt me knowing it was never discussed or seemed important enough to do so. another example of the flaws in our healthcare system.
advocating is hard work, but you have to stand firm in what you believe. “you have to be your own doctor.” (i am becoming my mother ha!)
my first baby is officially no longer a baby. landon turned two last weekend! i still can’t believe i have a two year old (and two kids…), but this age has been one of my favorites yet – despite the tantrums. we decided we were not going to do a party and just do cake with my family. then i ended up extending an invitation to a few friends and their kids half expecting them to be busy. nope. they were all free and able to attend, so we ended up having a real party!
we had to have a baby shark themed party. i mean, landon is OBSESSED. the weather held off and landon had the BEST day! baby shark everywhere and pretty much on repeat. if i can give one tip: pre-naptime birthday parties are the best. no after nap grumps to worry about and everyone will need to leave to get their kiddos down for their own naps. WIN WIN. here’s a look into our day and all the details.
note: i enjoy doing this sort of thing when i have the time and extra hands. shout out to my mom who helped during nap times, mike and my FIL for making the underwater scene a reality (after an impromptu decision to keep the party outside) and everyone for celebrating our little dude ❤
brady bug is officially FOUR months old. i can’t get over how fast time is going. i need it to slow down for a minute for my heart to catch up.
brady is a lean (not really), mean (definitely not), growing machine (this is accurate!). officially twelve and half pounds and thriving! he has been even more alert, smiling and even laughing a little. we love watching him work so hard to get stronger everyday.
he took his first vacation and beach trip this month. a few days to hilton head, south carolina. he was the cutest little beach bum and snoozed most of the afternoons on the beach. man, but packing up the car for this trip was a task. not sure we will be doing that again anytime soon. OR we have to go and stay for a week to make it worth it!
as for milestones, brady is pretty on track with a typical baby his age. i know this will change, but for now, we are appreciating every little win. his PT is very impressed with his work ethic and strength. my hope is he continues this progress to make recovery from heart surgery a little bit better.
speaking of heart surgery, we officially have a date. june 10th. we are both excited, anxious, and nervous for this day to come. excited to see him thrive and be free of the daily struggle to eat and breath. anxious and nervous for all of the reasons you would expect. in this last month, we have started brady on a diuretic to manage his heart failure symptoms, so we know it’s time. we will continue to pray for peace and strength as we prepare for one of the toughest days of our (and his) lives.
medically, everything else is status quo. still exclusively pumping. still thickening feeds. we hope after surgery, these things might change for the better as well. only time will tell!
landon continues to be the sweetest big brother (most of the time). he loves holding brady, helping him with tummy time, cleaning up his bottles, and “playing” catch. we are still working on landon understanding brady is little ha! landon also thinks it is hysterical when brady has the hiccups. it’s the small things, people.
we are loving this stage of life, though exhausted, and can’t wait to see what this next month brings.