I am starting this RU-vid channel to encourage other parents with children who have hypertonia. I will also have updates on Tucker and give recipes for feeding tubes.
Hello my name is Tiffany Fitzsimmons. I am married and we have three wonderful boys. Our youngest was born in November 2018. He was born with Pierre Robin Syndrome. We spent 32 days in the NICU. He had to undergo a major jaw surgery at just 7 months old. At 8 months old we found out that he had a muscle condition hypertonia. With the combination of Pierre Robin Syndrome and hypertonia. Tucker had a G-tube inserted at two weeks old. He still relies 100% on a G-tube to his nutrition.
My baby is also having hypotonia,my son is 15 months old now he always bends his head(most of the time) ,he is having difficult to drink liquid items,any idea madam whom to check with ,i mean which specialist
Hello mam . My son is 12 moth old . He have some developmental delay . Doctor said he was affected may be hypotonia . Doctor give some medicine for him. Can we take the medicine? Plz reply. Thank you
👏👏👏 Well done little man !! Hope he's still doing better!! He's a handsome little guy. I saw another video, more recent. I know he's nonverbal and uses a speech device to communicate. My little cousin is nonverbal autistic and also uses a very similar if not the same device. Is your boy autistic ?
He is almost 5 years old and June he said his 1st 4 word. His issues is mostly in his face and swallowing now. He is getting there. How old is your son ?
@@tiffanyfitzsimmons7376 As a mom of a non verbal 3 year old, I see you strengthen his mouth with your hand massaging. Can you make a game out of this? Have you ever placed your hand on and off his mouth to try to teach him Wa Wa Wa Indian sound?
Thank you for sharing. What is his feeding schedule and diet consumption. How thick do you blend his foods to go through the extension? Sorry for so many questions.
Can you show his feeding tube and how it’s connected? What size tube do you use? What syringe and extension set do you use. Can you also show how you mix his foods and a better picture of the actual feeding please?
Hello ❤ we also have the same problem: pier Robben ,traheostomy hyptonia. I see U are best and your little boy fantastic. My boys now is 1.8 year , if u don’t matter I ll write u here some questions🙌🏻 we from Ukraine 🇺🇦 by the way my name Dima ,sons Damir
@@tiffanyfitzsimmons7376 I am sorry to ask a lot of questions but today I just found out that my daughter have the same condition. And I am so confused about what I should do and what is the best treatment
It can be alot of different things. With my son they have done mri genetic and alot of test. He has Pierre robin syndrome as well and they think that could be part of it. What testing has been done ? Yes don't lose hope 🙏
Please guide my son also start scooting how long it will take him to walk after scooting he is two year old now gradually improving he also have hypotonia
Well they told us on day 2 of birth that he was flobby baby but i didnt undestand what that meant till they told me so he had hypertone whn he was about 9 months
Hi.. At wt age your child start his milestone like rolling, crawling, sitting and walking. My baby is 11 month old and have hypotonia. Still not roll over. We started physiotherapy. At 7 month he control his neck little bit.. Am so scared about his.. Some doctor said it may be a change of cerebal palsy and it's very scary.. Plz advice me
My did not roll over till about 9 months. And started sitting up then as well. He did crawl till 14 months old. My son did not walk till he was 2 and that was just a few steps. I know it is hard My son still has issues with his face. Still on a feeding tube. He will get there in his own time. . Keep up the exercises and faith. Praying 🙏
