New modification!! A pouch can now be attached to our Medi-Care Pocket. 🙌🏻👏🏻🙌🏻👏🏻. My biggest hurtle with creating adaptable clothing is imagining the world the you live in. Imagining your struggles. Imagining your pain. Imagining your life! And then finding way to make that life just a tiny bit easier. You all are rock stars! And I thank you for allowing me to see a glimpse of your life with your little tyke!
Conner 2 years ago today just minutes after his first emergency surgery that saved his life vs. today! I’m constantly in awe of this kid and his strength! 💪🏼
So this happened today in speech therapy.
Lip rounding with the straw AND sucking AND swallowing without a single problem. In fact, there were smiles and giggles nearly the entire time.
Conner hasn’t willingly drank out of anything on his own like this since his bottle days which was over a year ago. And even with the bottle, it was a struggle. Conner had a very strong oral aversion and is 100% tube fed. Days like today remind me that he will get there at his own pace. So proud of this kid!
First attempt at batch blending Conner’s food...made possible by nap time and Red Bull.
Costco run made easy with the @swingthingofficial
! We are still working on Conner’s trunk control and sitting on his own, but in the meantime this is 🙌🏽
She dropped almost a pound, has another lung infection, we are up to 2.5 hours a day of chest therapy and breathing treatments-- and I'm trying to find something uplifting to say... Meanwhile she just smiles through it!
Talk about the lemonade 😢😍
#sheliftsme #inspiresme #callierae #cysticfibrosissucks #gtubelife
Pretending this is chocolate ice cream 😔🤦🏽♀️🤮🍫🍦
New blend...increasing carbs in hopes he will gain like me when I eat carbs! Conner has been stuck in the 21lb range for months...he gets longer, but not wider. It’s a problem many people would wish for, but we need this boy gaining! I am hoping this is the right combo for him!
And just like that, we start the day all over again. •
They say that kids thrive on routines but quite frankly, as a special needs mama who juggles EVERYTHING in order to keep my child alive, keep my job, and try to keep making healthy meals and normal life chores going... routines help me thrive too. Many thanks to @katiewilsonphoto
for capturing my “before Lorelei wakes up” routine of drawing meds for a couple of days. It’s so much easier to grab and go during the day this way! •
What routines help you get through your day? This is one I picked up along the way... always looking for new special needs mom hacks!
💜Today is Epilepsy Awareness Day.💜 💜I HATE watching this video. This is the video I took to show Conner’s neurologist. He was diagnosed with a rare form of epilepsy called infantile spasms. 💜His spasms did not present as spasms often do (startle or head drops). I share this video in hopes that it helps someone spot spasms sooner. His were subtle, but the damage done to him and babies with infantile spasms is devastating. The longer the spasms go uncontrolled, the more the child can digress. Conner stopped chatting and smiling in a very short time. His vision got noticeably bad and he had terrible nystagmus. 💜The worst part about spasms? Not every child responds to treatment and there’s no set treatment that is used. All treatments are give and take. We treated Conner with a high dose steroid called ACTH. During treatment, Conner started vomiting daily, he began refusing to eat and ultimately ended up with a gtube. 💜I am beyond grateful that it stopped his spasms and he has been seizure free for just over a year.
Happy Monday from this kid. At least one of us thinks it’s funny that he threw up all over the wall (vomiting is normal in this house). Not pictured: Conner laughing as I clean it up.
Also not pictured: vomit that made it all the way down the wall and into a puddle on the floor 🤦🏽♀️
"Some days, she has no idea how she'll do it. But every single day, it still gets done"
This! I feel this way on a daily. The overwhelming feeling of is there enough time in the day, did I forget something, is there a doctors appointment today, or therapy session, are my bills paid, what about his meds did I miss one, or is it time to pump again or have I eaten today?... not only was I a new mom a year ago I got the added challenges of being a mom to a medically complex heart baby, who lived 6 months inpatient and fought several battles to stay alive. Even though it's definitely a stressful, tough, tiring, and eventful life I wouldn't trade it for anything in this world. Because those good days, hours, minutes even seconds make it all worth it! Liam has been a true inspiration and has changed me for the better. My little hero I hope you know what you mean to me and how much you are loved 😍❤
#chdsucks #chdlife #chdwarrior #CHDAWARENESS #heartwarrior #heartbaby #hearthero #hlhswarrior #hlhs #hlhssurvivor #tubie #gtubebaby #gtubelife #tubielife #tubiemom #heartmom #heartmomlife #alwaysmybaby
Food prep for Mila. She’s starting to eat more textured food. Don’t have to purée as much anymore. Woohoo Mila!!!! Way to go. #gtubelife #specialneedsmom
Balloon check today. Under the tube holding it in place is what we call a balloon. Like a water balloon. Its filled with water that blows it up to allow the tube to stay in place. So I’m doing a water check today. In Boston I’d have my tube changed every 3 months but in the Uk it’s every 6 months. I’m going on 6 months now. Because I’m so used to it being changed every 3 months I’m doing the balloon checks more often just to be precautious. That’s all there is to it. But definitely time for a new tube. 😊😊#gtube #gtubelife #cysticfibrosis #cfrd #diabetic #diabetes