Nayana turned two last week! Time really does fly! I decided it was time for an update.I also have a few questions for my fellow WHS parents.It has been a while since I posted an a lot has happened.Nayana has since had her cleft lip repaired and last April she joined the g-tube club. In July she had her cleft palette repaired ( not fun).She currently takes two different medicines for her seizures which are still not controlled.Nayana throws up atleast 2-3 times a day, we don’t seem to be getting anywhere with her GI doctor.She was switched from pediasure w/ fiber to peptamen jr with the hope that she would stop throwing up.She didn’t. I was hoping if anyone who has dealt with this problem and has found a solution could let me kno.Since Nayana was a baby she’s loved getting her head rubbed and her hair played with.she eventually started running her own hands
through her hair, but maybe last month she started pulling her hair, yanking really,to the point where she started pulling out her hair.Now we have to keep a hat on her all the time.Shes still managed to pulled out her hair on the one side of her head ,now it looks like she has a chic little Mohawk. 🙂 She’s the sweetest. She can roll and twist her body around to get where she wants.She can’t sit or stand yet but she will hold her weight when put in a standing position ( only for a little).Shes very social and loves when people talk to her. She LOVES her brothers.We had another baby in November .his name is Noah , and she such a good big sister.i had them both on the floor, she loves it he hated it ,so when he would start crying she rolled over to him and started rubbing his head.:). So right now she weighs 15 pounds and isn’t gaining.hopefully once we figure out how to get her to stop throwing up that will change….Some days are hard but the goods days make it all worth it.
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Hi, I was wondering if she had a fundoplication done at the time of her g-tube placement? My son didn’t have it done, but that’s only because his was an emergency placement and luckily, hasn’t been an issue. But, the fundo is to help prevent vomiting. I’m not sure if it can still be done in her case if it wasn’t, but it couldn’t hurt to ask. He also has a history of seizures. His first one was at 10 months and he spent the rest of the year in PICU every month after that…if not once, twice for weeks at a time. He was there so much that the doctors and nurses knew us by name and his meds by heart. Two years ago, his Neurologist put him on the KETOGENIC DIET and his seizures stopped instantly! He went from every month to months, 10 to be exact the first time. He has had other episodes, but months is way better than every month. I don’t think the diet is used enough. It can do one of three things (1)Stop them all together (2)Reduce the number of seizures (3)Nothing. He still takes 2 meds for his seizures and the only time he has an episode is when he’s had a growth spurt and needs his meds adjusted. And don’t be too concerned about the fact that she’s just rolling around to get where she wants. My son is 3 and just started sitting about a year ago, and crawling/hopping about 3-4 months ago. It’ll happen. I hope this helps. Good luck to you’ll!
Also, congratulations on your Noah. We had another baby in November and also named him Noah!!! Too funny. Just had to throw that in there 🙂
Hi Letty! She did not have that done when she had her g tube placed.her GI doctor was suggesting a jg tube.or gj tube .either way thats not something we want to do,considering that they told us she would have to be hooked up to it pretty much all day.We’re trying to explore other options..I was wondering what kind of seizures does your son have? Nayana has absence seizures so shes having them up to 50 times a day,but they’re very quick.i definitely will bring up that special diet at her next appointment.thank you! And concrats to you ad well on your Noah.
Hello! Congrats on your new baby Noah! My baby Kaitlyn is 2 y/o as well. She used to spit up a lot, then she took Zantac and Omeprazole. She is better now. Hope this helps. Good luck!:)