#costellosyndrome

MOST RECENT

Hadley had OT today. We have been working on her upper body strength so she can learn to get to sitting position by herself. Becky her therapist brought this wedge to try something new. It worked great. #occupationaltherapy #ot #upperbodystrength #workinghard #specialneeds #costellosyndrome #hadleymarie #hadleystrong #shewillconquer

So proud of this sweet girl today! She has been really under the weather and struggling to fight this cold, but was determined to make it to her Pre-K Celebration today! We are so blessed by this little lady! She received the award for “Most Outspoken and for a child that should be struggling to learn to use words... that is a huge accomplishment! So thankful for her amazing teachers and the progress she has made this year! Off to Kindergarten we go! #teamkatibug #costellosyndrome #rarediseaseawareness #blessedbeyondmeasure #thankfulforthejourney

She’s so serious this morning! Finally wearing this dress from the baby shower. #cutestbaby #trachbaby #juicycouture #tinyproblems #hadleymarie #hadleystrong #costellosyndrome #littlepoppybows #specialneeds

Ulysses 16 and dad #costellosyndrome

Yesterday since it was such a beautiful day I took Hadley outside. Attempted her pool. She wasn’t having it. I was surprised bc she loves tubby time. Hadley kinda liked after a while. I guess we will have to keep trying to see if she will eventually like it. Then in the evening we went to her brothers baseball game. She was so cute when she heard the others clapping she would look at me then smile & clap. #easingintosummerfun #babypool #beautifuldays #carters #cartersbaby #hadleymarie #hadleystrong #costellosyndrome #littlepoppyco #littlepoppybows

It took long enough but that first line is so worth the wait! Thankful for the “all clear” each and every time! Thank you for all the prayers and all the people that that checked in on us! #teamkatibug #costellosyndrome #rarediseaseawareness #blessedbeyondmeasure #thankfulforthejourney

On our way to the first appointment of this trip. Wish us luck #joeycsjourney #teamjoeydavid #costellosyndrome #arnoldpalmerhospital #neurosurgery #wevegotthis #disneysprings

9:30am and someone is still sleeping. So much for morning adventures before our appointment #teamjoeydavid #joeycsjourney #costellosyndrome #vacationofsorts #comfortablebed #sleepyhead #dontwakeasleepingbear

When you have to start off your Friday with a quarterly cancer screening that you will not know the results of until at least Monday... you spend the rest of the weekend making memories! Duck Donuts with Granny to watch them make her fancy donuts, late dinner date at her favorite restaurant with mommy and daddy, water gun fights in the front yard with her bestie, picnic dinners at the hunting club with all her “friends”, sleepovers in her zebra tent, church on Sunday morning, and relaxing Sunday afternoon naps! This weekend has been so refreshing and fun! #teamkatibug #costellosyndrome #rarediseaseawareness #adventuresofkatiandjudson #blessedbeyondmeasure #thankfulforthejourney #makingmemories

Day 2 of having no nurse. Unless you live this life you truly don’t understand how nice it is to not have them here. We can do our own thing when we want and no one to interfere. We spent this rainy morning sleeping in, tubby time, & reading books. Hadley LOVED to be read to. She turns each page and is so engaged. I love that all three of my babies love reading. #lazysundays #nonursedaysarebest #reading #books #gymboree #pandastyle #gymboreebaby #hadleymarie #hadleystrong #costellosyndrome #trachbaby #cutestbaby #sweetestgirl

Peter RepostBy @pfroehlich93: "Here’s a better pic of me in my new @theincredibles t-shirt." (via #Quick reposter @AppsKottage) #costellosyndrome

Off to Duke for out quarterly cancer screening! Please pray for safe travels, empty bellies and great results today! #teamkatibug #rarediseaseawareness #costellosyndrome #blessedbeyondmeasure #thankfulforthejourney

Man måste ha hjälp när man riggar sin lilla båt. Lasta det viktigaste i skottkärran.
Got help when putting on the sails on my small boat. Load everything that is important. ❤
#costellosyndrome #costellokids #wooden_boat #träbåt #påmastning #skottkärra #barfota #jagrud #björkö

Every year I seem to reflect on this day a little more... 6-5-14.... diagnosis day! This day is best described as the most life altering moment of my life outside of giving birth to this tiny miracle! 4 years have come and gone and in those 4 years we have reached milestones we were told we may never achieve! We have set goals and met them, created IEPs and revised them, learned life skills and learned how to help others, but most importantly we have stopped taking moments for granted and instead made memories!The journey has not been without rough spots, but for the most part we have been exceedingly blessed with “unremarkable” results in the eyes of her specialists. Prayers for many more “unremarkable” years to come and many more memories to be made! #teamkatibug #diagnosisday #rarediseaseawareness #costellosyndrome #blessedbeyondmeasure #thankfulforthejourney #specialneeds #makingmemories

Advantage to staying tiny? You can wear last years summer clothes! Tomorrow we head to Delaware again to see a new endocrinologist who also specializes in Costello’s. We will determine if Hadley needs growth hormones. #oshkoshbgosh #lastyeargains #summeroutfit #picnicplaid #daddypickeditout #lovehersmile #costellosyndrome #hadleymarie #hadleystrong #imrare #oshkoshbaby #eyeletshorts

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