one YEAR update

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!

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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.

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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.

three month update

hooray! today is the day our little brady bug turns THREE months old. how? i’m not really sure, but time is moving both at warp-speed and slow (hello long days). it has been a big month for brady and i am excited to share with you all where we are at!

new this month in terms of milestones – brady is SMILING! i pretty much spend all day trying to get those sweet little gummy smiles out of my little man. he spends more time awake during the day, which i love, and he has started to coo. my heart can’t handle it. these are little newborn things i never new i missed until now.

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landon is still adjusting. most days he’s great with brady. he will want to help hold brady’s bottle and give him kisses. every morning, i can hear the pitter-patter of landon’s feet running to our room to find brady in his bassinet. sweetness. other days, however, it’s a smack to the face, poke in the eye, and whine kind of day. you win some and lose some. we are working on big brother skills, but happy to report we haveΒ mostly good days.

other things that are new this month have more to do with the medical side of life with brady. we had a slew of appointments and new doctors to visit. here’s the skinny on it all:

  • eyes: check. we are grateful we only have to go back for annual eye checks
  • ENT: check. ears look good, we will go back at 6 months for another hearing screen. we did do a scope to check on Laryngomalacia (aka floppy airway) which is very common in all babies. structurally all looks well, but we did see signs of irritation from reflux. this is something we are keeping an eye on.
  • swallow study/feeding therapy: we learned through a swallow study that brady has a risk of aspirating thin liquids 100% of his swallows. the barium test showed deep penetration into the airway with every swallow. when we moved to “nectar” consistency, we saw improvement with every swallow. currently, we are thickening feeds to nectar consistency and will re-test in 2-3 months. i’ll do a separate post on this process.
  • cardiology: this was the big one. brady has been doing so well and still is doing well. however, we have started to see all the signs and changes that we were warned about. brady is in the early stages of heart failure, but we are still able to manage it and schedule surgery “electively.” we started him on Lasix to help take some pressure off his lungs and heart. this should help with his feeding and overall well being. we also saw a small dip in his weight gain. he is still gaining, but not on his curve he had been on. we have 2 weeks until his next appointment to turn it around before we start talking about fortifying his feedings. i think we can do it! we are seeing some positive changes since thickening. his most recent echo showed everything exactly as it has been. the hole is still very large (almost 1 cm) and not getting any smaller. surgery is tentatively “scheduled” for July.
  • PT: brady started PT and we are working on neck control and range of motion. just in a few days of directed play and proper holding techniques, we have seen improvements. we are battling a flat head (his left side) because he favors looking left. odds are brady will need a helmet, but we are doing everything we can to fix it before we get to that point. he’s a strong little dude!

most importantly this month, he is still as cute as can be, sleeping like a champ (PRAISE), and stealing hearts everywhere!

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