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Specially Haniya
Приєднався 26 лис 2017
Hello beautiful people! I am Haniya's Mom and welcome to Specially Haniya! (pronounced 'Ha-knee-yeah!', which means Joy).
This channel is dedicated to empowering parents with medically fragile children. Follow the journey of my special needs daughter as we navigate through unknown waters! I hope to share with you tips, how-to's, and general information I pick up along the way. We are all in this together. I hope you find these videos informative and inspiring!
This channel is dedicated to empowering parents with medically fragile children. Follow the journey of my special needs daughter as we navigate through unknown waters! I hope to share with you tips, how-to's, and general information I pick up along the way. We are all in this together. I hope you find these videos informative and inspiring!
What I Pack in my Special Needs Diaper Bag | Specially Haniya
Hello beautiful people! Each special needs child has different needs and this video is a peek into my everyday needs when traveling with a special needs child. For many special needs families, the diaper bag not only handles basic baby needs, but also functions as a medical house. To someone not familiar with the 'special’ requirements of our children, this bag may seem like a standard travel accessory. However, it is more than that. Sometimes, there is life-saving equipment packed into this innocuous bag. And sometimes, it houses the treatment to all the emergency scenarios we play in our heads before we muster up the courage to step outside the house. I keep it organized in a way that will make it easier for me to access crucial items. I found this system works best for me. I am curious though. What do you keep in your diaper bag?
Items:
- Skip Hop Diaper bag: unfortunately unable to now find the exact one but the Skip Hop Forma Diaper Bag Backpack is similar with the two compartments
- Pen
- Wallet
- Phone
- Diapers and wipes
- Napkins and burp cloths
- Ambu bag
- Extra change of clothing
- Changing pad
- Disposable changing pad
- Toiletry bag: face lotion, body lotion, lip balm, mini hand sanitizer, nasal sucker, diaper rash cream, thermometer
- Syringes of various sizes for various purposes
- Emergency g-tube kit: tegederm, paper tape, 60 ml syringe, extra g-tube, 2x2 gauze, 4x4 gauze, petroleum jelly, 5 ml syringe
- Insulated bag with 60 ml syringe and on the go ready made formula, pre-measured powder formula with containers, sterile water
- Extra kangaroo bag for the pump
- Medications needed with mixing containers and syringes with caps
- Occupational therapy nipples and pacifier: haberman nipple
- Extra hand sanitizer
Disclaimer: This video is NOT sponsored. This video is not intended to substitute the advice or instructions of a doctor or other medical professional. Always work with a health professional to ensure the product is right for your child.
#travel #baby #organize
Items:
- Skip Hop Diaper bag: unfortunately unable to now find the exact one but the Skip Hop Forma Diaper Bag Backpack is similar with the two compartments
- Pen
- Wallet
- Phone
- Diapers and wipes
- Napkins and burp cloths
- Ambu bag
- Extra change of clothing
- Changing pad
- Disposable changing pad
- Toiletry bag: face lotion, body lotion, lip balm, mini hand sanitizer, nasal sucker, diaper rash cream, thermometer
- Syringes of various sizes for various purposes
- Emergency g-tube kit: tegederm, paper tape, 60 ml syringe, extra g-tube, 2x2 gauze, 4x4 gauze, petroleum jelly, 5 ml syringe
- Insulated bag with 60 ml syringe and on the go ready made formula, pre-measured powder formula with containers, sterile water
- Extra kangaroo bag for the pump
- Medications needed with mixing containers and syringes with caps
- Occupational therapy nipples and pacifier: haberman nipple
- Extra hand sanitizer
Disclaimer: This video is NOT sponsored. This video is not intended to substitute the advice or instructions of a doctor or other medical professional. Always work with a health professional to ensure the product is right for your child.
#travel #baby #organize
Переглядів: 4 460
Відео
Organizing Special Needs Medical Closet | Specially Haniya
Переглядів 1,8 тис.4 роки тому
Hello beautiful people! I'm doing a tour of Haniya's medical supplies and talking about how I label, organize, and store her various supplies. As always, items that are not used are donated. I try and keep everyday items next to each other, like her g-tube extensions, tape, gauze, and feeding bags. I grouped her oxygen supplies from pulse ox probes to nasal cannulas in one box. I have the emerg...
Special Needs Bathchair: Reviewing the Rifton Wave and the Otter | Specially Haniya
Переглядів 8 тис.5 років тому
Hello beautiful people! As our children grow older and can no longer fit into the conventional baby bath tubs, it is important to know of the bathtub/bath chair options available for safety purposes-for both you and your child. There are several brands that make bath chairs for growing kids but the two most popular ones are the Rifton Wave bath chair and the Wenzelite Otter bath chair. I decide...
Packing Respiratory Equipment + Portable Oxygen Concentrator | Specially Haniya
Переглядів 6165 років тому
Hello beautiful people! Traveling by air with respiratory equipment requires some pre-planning. Not only do you have to be sure to follow any airplane regulations, but you need to remember to pack all possible respiratory items you might need during the flight. The most important thing making sure you have an approved portable oxygen concentrator (POCs) and learning how to master it before leav...
Kangaroo Joey Pump: All the Essentials | Specially Haniya
Переглядів 44 тис.5 років тому
Hello beautiful people! There are different brands of tube feeding pumps for G-tube, NG tube, or JG tube fed children. I’ve made a super detailed video on the Covidien Kangaroo Joey pump everything from information on the bags, their installation, storage, and disposal to understanding hold errors, calculating feeding rates, and traveling with the pump. We’ve been using the same pump for two ye...
Using a Pediatric Pulse Oximeter | Specially Haniya
Переглядів 13 тис.6 років тому
Hello beautiful people! Haniya started having trouble maintaining her oxygen levels at night and was also on the Trilogy Ventilator (also a CPAP or a BiPAP depending on the settings). To monitor her oxygen levels effectively, we were given the Masimo pulse oximeter machine to use. It took some time for us to figure out what all the buttons meant and how to place the probe or sensor. This device...
Rhino Brace for Treatment of Hip Dysplasia | Specially Haniya
Переглядів 31 тис.6 років тому
Hello beautiful people! Hip dysplasia is a condition where the ball of the femur does not fully remain in the socket of the pelvis. This can be due to a variety of reasons. Haniya has low tone (hypotonia) and subluxation in one of her legs. The ligaments that would normally hold up the femur into the pelvic joint are lax. This resulted in the underdevelopment of the socket, where it was not dee...
What to Pack when Flying with a Feeding Tube: Ultimate List! | Specially Haniya
Переглядів 3,9 тис.6 років тому
Flying with children is never easy. Flying with children with feeding tubes (aka tubies!) adds to the stress. I hope this video eases some of your worries. We've flown many times over the past year, and each time we make and follow this list. I've tried to be as inclusive as I possibly could and showed you how I pack for the backpack carry-on with an emergency g-tube kit as well as the checked ...
POSITIVE RESULTS | Benik Vests (including G-tube) and Hand/Wrist Splints | Specially Haniya
Переглядів 4,7 тис.6 років тому
Hello beautiful people! My daughter's medical needs require her to wear orthotics, specifically the truncal orthosis and the hand and wrist splints. We've seen improvement in some of the negative changes that were occurring prior to ordering these. It's important to detect any abnormalities in your child's skeletal system early in order to slow down the progression, especially in children diagn...
Toddler Girl Carter's Haul for the Summer! | Specially Haniya
Переглядів 1526 років тому
Hello beautiful people! I love Carter's clothing and I am super excited about sharing some of the clothes I picked up from their recent summer line! Let me know which one was your favorite! :) Thank you all for your support. I hope my videos continue to help! :) This video was NOT sponsored. #carters #clothinghaul #babyclothes
LOOKBOOK: Eid Outfit Ideas for Kids | Pepperland clothes
Переглядів 4266 років тому
Hello beautiful people! I bought a couple of outfits from a new Pakistani company for the first time and loved everything about them so I decided to share it! This is my daughter's first shalwar kameez with dupatta. The tiny kurtas are adorable! The footwear (khussay) and bracelets (churian) were bought from local shops in Pakistan. I hope you enjoy and comment what your kids will wear on Eid! ...
Top 3 Diaper Creams for Stubborn Rashes | LIFE-CHANGING | Specially Haniya
Переглядів 6236 років тому
Hello beautiful people! These are my top three recommended diaper creams that I stand by. Do you ever feel that some rashes take so long to go away? I think I might have found an answer for you! Being in and out of hospitals opens up a greater chance of diaper rashes, and through trial and error, I've found that these three are the only ones that seem to work for us! Give it a try and let me kn...
Tube Feeding Options for Infants and Toddlers | Specially Haniya
Переглядів 3,3 тис.6 років тому
Hello beautiful people! This video narrows down the many options that are out there in the market. This is by no means the full list of formulas. These are just some types that I have become familiar with over the years and the recommendations through nurses, doctors, and nutritionists. Children with G-tubes or NG tubes (aka Tubies!) have different nutritional requirements. Hope this video make...
Intro to Seating for Special Needs Kids | Special Tomato
Переглядів 17 тис.6 років тому
Hello beautiful people! Special needs children require multiple adaptive equipment to suit their various medical needs. If your child is hypotonic, this chair is especially useful in keeping him/her in a more upright position. Feeding in a more upright position is good for digestion. Also weight bearing on the joints is achievable in this position. The Special Tomato soft touch sitter can be at...
Tips on a Pediatric Holter monitor | Specially Haniya
Переглядів 3,2 тис.6 років тому
Hello beautiful people! My daughter, Haniya, had to wear the heart monitor for 30 days. This particular one is by CardioNet and is mobile. A Holter monitor records and monitors heart activity. There are many reasons why a cardiac monitor is prescribed. Haniya had episodes of bradycardia, or slow heart rates. I made a video explaining how to use one, where to place leads on the chest, and some g...
Cleaning an Infant G-tube | Tips and How to | Specially Haniya
Переглядів 3,4 тис.6 років тому
Cleaning an Infant G-tube | Tips and How to | Specially Haniya
How to give an ACTH injection in an Infant | ACTHAR | Specially Haniya
Переглядів 10 тис.7 років тому
How to give an ACTH injection in an Infant | ACTHAR | Specially Haniya
Can't understand her, talks way to fast ! !
How about 250ml how many ml/hour to be consumed in one hour
Hi!!! Could you please share the link for the bag? I just received my kangaroo pumpb for my baby.. i usually use infinity
The Rifton is much higher quality than Otter. The value ratio for the difference in quality is better as well. I have had several Otters and a couple Riftons over the years (my girl is 22 now) and the otter is more affordable if paying out of pocket but there are some significant safety issues that one should be aware of with Otter. They use the cheapest of materials and so there is no grip to the feet or the wheels so it slides all over the place during use, very unsafe for caregiver and user. I added rubber feet to mine. Also, the plastic parts break easily. My daughter fell backwards when something broke during positioning the back bar. The latches in the height extender also break easily. It’s just inferior quality. BUT, it is much lighter to use if you like to store when not in use, or for transporting for trips etc. so as long as you are aware of the dangers of inferior quality and keep that in mind then the otter is ok.
Hi! I work in a group home and have an individual with this exact pump, I'm currently having an issue where all of the buttons except for the power button are not responding.
Hi! I would reach out to the DME company to replace it or troubleshoot with the Kangaroo company's customer service! Hope that helps!
The otter comes with a base as well and the same head straps and wast strap
Ik its been a while since u posted this but by any chance do u remember which one dried faster? Did your daughter seem more comfortable with the softer fabric?
Hi! I am not entirely sure if she found the softer fabric better, but I felt like it would be more comfortable. In terms of drying time, there was honestly no significant difference I found between the two. I hope that helps! 😊
We just got the rifton bath chair, and your video was super helpful!!!!! Thank you so much for taking the time to make it and post it :)
You are so welcome! I am glad it was helpful!☺️
My 3 year old justed started wearing her brace today and she isn't liking it
I am sorry to hear that! Hopefully she will be done with the treatment soon❤️
Does it need to be by feeding tube? Can’t be drinker only like that?
Some, but not all, of the options I mentioned can be drank without the need of a tube! However, all these are appropriate choices for feeding tubes ☺️
Hi, thanks for this video. my son has a special tomato chair. I am interested in finding out more about the companies that loan it out to see if we can borrow one when when we go out of state.
Hi! I am glad you found the video helpful! Unfortunately, I am unaware of any companies. Try reaching out to the Durable Medical Equipment companies or local Occupational Therapists to ask about rentals! ☺️
This brace can use hip can be corrected but muscle atrophy can affected.2 Year old
Holaaa, yo tengo una pregunta porfa si pongo en velocidad de flujo 100, quiere decir que el alimento Pasara en una hora ??
¡Hola! Sí, si establece el caudal en 100 ml, funcionará durante una hora.¡Espero que esto haya ayudado!😊
Perfect video that i needed, have a 2 month old, i was concerned about the oxymeter levels but i realized age difference matters and the correct oxymeter peds chart showed my baby has normal levels! So ready to get this freaking oxygen tank out of my home, just looking at it gives me anxeity. Im debating on dressing it up and putting a hat on it but at night thatd be even more scary. One victory at a time! 🎉
I am so glad this helped! Congrats on another milestone! ☺️
Is these available in the philippines?
Sorry, I am not sure. Please check with local medical equipment companies!
Thank you for providing this. I am a disabled veteran 52 yo with my wife fighting her second battle of breast cancer. My mind can only absorb so much. Did I mention I have Parkinson’s Lewy body? So videos like this are wonderful for people like me and my hospice help. God bless, best wishes for you and your little angel.
You're welcome! I am so glad this helped! I wish you peace and blessings.
Hi, how is your daughter now. Is she completely fine
Mine is showing clog error even when I'm doing water
Hello! Check for kinks in the tubing as you set up the bag into the pump and re-prime it. I hope that helps!☺️
Is your daughter cured of dysplasia?? Length of both legs are equal now??
You are a blessing thank you for helping me figure out how to get my pump off the damn clamp😂
Hi how r U& haniya.how is her hip.normal
Hi, I just stumbled upon your channel.. My son is also a special needs child.. Would love to know more about Haniya. Do upload videos .. Or May be I can follow you up through Instagram?
Hello! Sorry, I do not have an instagram account. Thank you for following!
Ethra month kond shari avum
Hey! Just a quick suggestion could you show how to deal with errors of the pump? Like flow error and feed error?
Hi Morgan! For those errors, I would replace the entire pump bag. It usually means that either the bag is empty or there is an occlusion somewhere in the tubing. Hope that helps!
I'm getting clog error even on water
Hi, what size are you showing in the video (the Otter)? Because there are 3 : small medium and large
Hi Rihan! They are both size medium.
Love to hear about it
thank you so much for this video - very clear and had loads of info. :) Bathing is one of our son's favourite parts of the day, so this video was very helpful. xox
I'm so glad it was helpful! ☺️
Which skip hop diaper bag is this? My son has airway & severe feeding issues so I’ve been looking for the best bag to organize all his medical stuff & extra g-tube supplies 💕 your video is SO helpful
Hi! I am unable to unfortunately find the exact one in the video but the Skip Hop Forma Diaper Bag Backpack is similar in that it has the two separate bags included! ❤️
so helpful.Thanks again for sharing.keep up the good work!!
Thank you!❤️
Have you seen where there is still meds in the needle part once you started to taper? Like .06 isn't that much on the syringe so to me it appears most of meds drawn was in the top of blue tip
Hi Ashley! You can draw up the medication, pull back, and then switch out for other syringe for injection.
Thank you for these videos. There so helpful.
You are welcome! ☺️
Aww Haniya is such a sweetie pie. New subscribers here from Ontario, CANADA. Love Maddi and I ❤️😘
Welcome to the channel! ❤️
@@speciallyhaniya5757 aww np
This was SO helpful!!!!!!!
Thank you, I'm glad you found us!☺️❤️
Baby
13
Baby
19
External tubes
I bought such a thing and put it on for my child, it is very satisfied and it is very helpful
Hi Anna, that's great! Glad it helped!☺️
Order Karne Ka Tarika bata do
Hi! Please check out the description!
My son has a G-tube and I'm confident in everything except calculating whenever we change the amount. Lol. Thank you so much!
You are so welcome!☺️
My bbys left bar turns all the way red when he’s moving or angry his oxygen goes down to 80s sometimes 70s but once he stops moving and calm it goes right back up to 97 his norm his nurse said maybe the signal also is weak???
Hi April! It could be a true reading or a weak signal. It would be hard to tell which one unless a physician was present.
@@speciallyhaniya5757n V
I wonder what it would be like to sit in it
Why this baby didn't Cry? I must be doing it wrong
My daughter does not cry in response to the needle prick, but shows other pain behaviors.
@@speciallyhaniya5757 my needle is 23 gauge
What if the sig is red and green at the same time? Is this reading accurate? If the signal is red all the way Is this a accurate reading ?
Hi Trelle! Which signals are you referring to? The bar on the left shows the quality of the signal; the higher the bar, the better the signal. It also rises and falls with the pulse. The bar on the right determines how much perfusion is at that site; the higher the bar, the better the quality. Hope that helps 🙂
@@speciallyhaniya5757 so the bar on the left turns red when my baby is crying or moving around. I wanted to know if those reading were accurate readings, if the bar is red. Thank you so much.
That could be an accurate reading. Movement can cause an inaccurate measurement. When there is low oxygen available, it will turn red as well. So it's important to assess your child if it is alarming. Have your doctor take a look to make sure the readings are correct! ❤️
@@speciallyhaniya5757 Thank you.
My angry that they charge so much for seating for special needs.
Hi Julie! There are several resources available to assist in receiving medical equipment if you are in the US. Please reach out to a social worker who would be able to link you!❤️
Hello beautiful people! I hope this helped you out! What else do you add to your diaper bag?
Hi please help me from where I get this injection for my 2 years old daughter , she is suffering from infertile spasms... She can't talk, walk etc ...
Hi! Unfortunately, I do not know where else to find this medication outside of the U.S.. Please talk to a pediatric neurologist in India because they would be better able to help you!❤️
Hi I need this injection for my baby but not available in india. We're we get the same products?? Pls let me know
HI Kiruthika! Unfortunately, I don't know where this medication can be found outside of the U.S. You can try reaching out to a neurologist in India who would be better able to help!
@@speciallyhaniya5757 india neuro also tried not available last 3 month in india. Alternative injection is available synacthen and acton prolangatum. I don't know which one is best and also I'm scared and worried about my baby
Kiruthika, the medications you listed are both ACTH which is the hormone ACTHAR also contains. Unfortunately, I do not know much about either one of them and their efficacies, so I cannot tell you which one is best. Whatever decision you chose to make, is the best choice for your child because you are doing it out of love with the best intentions. You are the best mother for your baby!❤️
Can I apply on the foot instead of the nails?
Hi Truc Vu! Yes, you can apply to the toes as well.