Oh this crazy hair boy! My love for you grows by the second and even more when you show me your strength! Today was a very long day all because of one doctors appointment that wasn’t scheduled by me! I always schedule Uriah’s doctors appointments before noon because Uriah does better in the morning, but his pediatricians office schedule his appointment today with the airway clinic at 3:30... Then we get there at 3 and aren’t taking back till 4 and leave at 5:30 with maybe 25 minutes of actual dr/nurse interaction the rest being waiting... And to top it all off Uriah has been super fussy the past two days due to teething so he was not having it and just wanted to run free and then the scoped his airway which put him over the edge! But once again he cried for a minute after the scope finished (yea he screamed the whole time they were doing it) and then he was back to being his fun loving inquisitive self. He gives me strength! #tubie#tubiebaby#tubielife#tubieboy#tubiemom#gtube#gtubebaby#gtubelife#gtubefed#gtubeawareness#gtubekid#gtubeboy#geneticdisorder#genedeletion
As a child me and my siblings would always hit my dads belly as he laid on the floor, we thought it was so funny and made for hours of entertainment.
Watching my son hit his pappy’s belly this weekend and the smile it put on his face made my heart full! Then to see Uriah stop hitting pappy’s belly and lay his head down as if to say “i love you pappy”made my heart explode. Uriah’s personality is slowly showing itself and he is such a loving little boy! #gtubebaby#tubielife#tubiemom#gtube#gtubekid#gtubeboy#tubiebaby#tubielove
My daughter is 100% gtube fed! Apparently because she can walk and talk people even in the medical community think this is weird!! It's not when it comes to extremely premature birth... feeding doesn't come easy to her. It never has. She stopped eating by mouth at age 2. Up until that point she was bottle fed.. at 2 she was less than 20 pounds.. and we fed her every two hours it was exhausting... she vomited everyday of her life for 4 years!!!! 4 times or more 😭so there you get oral trauma. Which is only experiencing negative things happening with your mouth. She is scared of things in her mouth and when stuff comes out. She can't chew. She just doesn't understand that concept. Making a bolus with your mouth requires rolling the food with your tongue and making a ball while you chew .. breath and swallow. Her brain just can't comprehend all these steps. People take eating for granted. It's seriously not a simple task. Babies are born knowing how to suck. Prematurity makes it different. Suck- swallow and breath is the last step that will keep many preemies in the NICU an extra month or more!! Gabriella likes to lick the chocolate off the 🍩 then she uses her hands to crumble it up like teeth do in her opinion 🤣... this is how she learns! She's NEVER eaten one birthday cake yet. I'm hoping age 9/10 she will enjoy cake. This is a life long battle for her! We love our Gtube and I teach her to love it because it's not going anywhere! . . . . . #gtubekid#gtubefedkids#specialneeds#awareness#beyondthewanderlust #momtogs #cm_prep #atdiff_kids #pocket_sweetness #redtricycle
Lucas: Mom, I'm so tired!! Me: I know buddy. Me too. We are working hard with the drs to help you be able to sleep at night. Lucas: the last 2 times (2 nights) I didn't have seizures so that's good, right. Me: sure is!! ❤️ Once again Lucas has shared such a valuable lesson. He found something good out of a negative. Most nights he doesn't sleep. He wakes up at 3ish and stays awake. Wide awake. While it's exhausting for all of us I'm thankful that it's not seizures waking us all up. Figuring out his meds is like playing Russian roulette. I'm going to keep playing until we win. It's going to be a great day and much to be grateful for. #myboy#tsc#nosleep#coffeeivneeded#epilepsy#medicallycomplex#medicalmomma#gtubekid#perspective#myhero#grateful#itsgonnabeagreatday