Before I had children I would think of what kind of child I would have. I imagined her beautiful beyond compare, she would be so sweet and k...
Hear from real parents, a physician and a respiratory therapist on how caring for a child with a trach simply becomes part of everyday life.
In Brookshire, Texas, west of Houston, lies the Brookwood Community for Adults with Special Needs — a "joyful place" that grew from the seeds of one woman's tragedy to become a home for many.
Though my medically fragile child could become sick doing "normal" things like school and having friends, she has to live her life not in captivity.
A Vendor Turns Out to be a Loyal EZCare Customer Neotech, makers of EZCare Softouch, is well established in the NICU… We also have a loyal customer base
Support Trach Life with this Trach Mama T Shirt Looking good on both men and women, this soft jersey tee is comfortable enough to wear all day long. High quality print will make it an instant favorite in every wardrobe. .: 100% Airlume combed and ring-spun cotton (fiber content may vary for different colors) .: Light fabric (4.2 oz/yd² (142 g/m²)) .: Retail fit .: Tear away label .: Runs true to size
Suffocating. Intense physical and emotional pain. All-encompassing. Debilitating. Cannot sleep, cannot focus. So sick to my stomach that the thought of food is sickening. Absolute terror running through my veins. Time is non-existent. Sounds like a horror movie, like a movie thriller. It was my life for the first 11 months of my son’s cancer
"I hope things will change."
I recently filled an order for a childrens hospital in North Carolina for 6 dolls with specific special needs.. Thought I'd add some pics in case anyone is wondering if a doll could be made for your own special angel with one of these special needs... This doll has an omphalocele... An omphalocele is a birth defect in which the infant's intestine or other abdominal organs stick out of the belly button (navel) Her omphalocele is securely sewn in place. If could actually be removed at a later date is desired... This doll has a feeding tube as well as a trach tube... I can insert either, but customers will need to send me one to use, as I have no way of getting them myself... I can also make "pretend" ones using craft foam if you don't want the real thing added to your doll... I sew around the "incision" really well in order to keep the feeding tube in place.. Rather than fill the bulb with water, I fill it with air, so there's no chance of the doll's stuffing getting wet... You can easily add more air if ever necessary... This sweetie is a Down Syndrome doll with hearing aids in both ears..Her eyes are a little slanted and oval shaped, her face is a little rounder than the other dolls and a bit flatter from the side... Hearing aids are attached with velcro and can be removed if wanted for bedtime :o) The dolls don't normally have ears, but if you want your doll to have ears to go along with the hearing aids, I'm glad to add them.. This baby doll is a little boy doll with hydrochephalus, a shunt and a much larger than normal head... His shunt is located at the top of his head along with his scar, and his tubing runs down the side of his chest and tummy, ending at the scar point... The shunt and tubing can be felt under his "skin"... This cutie patutie has one shorter than normal leg.. His foot is located just beneath his knee on one leg... And last, another hydro boy, this one with a just slightly larger than normal head.. I thought I had taken a picture of his tummy tube, but can't locate it.. But he has a tube running down his chest and tummy ending at the scar location.. His shunt and horeshoe scar is located on the back of his head and can be felt through his hair... I'm always willing to try to recreate any special needs your child may have.. If you are wondering if a special need you would like added to a doll can be incorporated, please email me at karen @ karenskids.net (no spaces) and ask.. Pictures always help me to visualize what I'd need to do, so feel free to send me pics! You can read more about my Special Angel dolls at www.specialangeldolls.com or go to Custom Ordered Special Angel Dolls. Dolls are available in either 16" or 20" sizes..
When you bring home your trach baby you also bring with you a nursing staff and a full hospital supply closet. Luckily for us our house has a giant sunken living room complete with a wet bar. We decided that this space would be perfect for Jack so we arranged it to fit his needs, our needs and the n
A letter of intent is a future planning document that a parent can prepare for a child with special needs. The goal of a letter of intent is to assist your
A delightful, award-winning, animated short film that speaks to the power of a special "present" given with sensitivity, love and courage.
Free and Funny Family Ecard: Don't fuck with me... I have special needs kids. You have NO IDEA how strong I am. Or how determined. Create and send your own custom Family ecard.
Welcoming special needs in the church doesn’t begin with parking spaces, programs, or pews. It begins with eager love and compassion.
A while back I started talking about life with a trach, from a parent's perspective. This is a continuation of those thoughts - life with...
Seriously, who wants to thing about wrapping your kid in arm restraints? For what ever reason. But the fact is, for her own safety and my...
Microsoft CEO Satya Nadella and his wife Anu Nadella, photographed with their son, Zain. (Photo courtesy Microsoft and Seattle Children's) Zain Nadella,
Disclaimer: This post is mostly targeted for parents of trach/vent babies. Feel free to keep reading if you are not a medically comple...
Complex Child is an online monthly magazine about caring for a child with complex medical needs or a disability.
18 hacks for life with a tube fed kid.
Handmade Dolls
Complex Child is an online monthly magazine about caring for a child with complex medical needs or a disability.
I can hardly believe that 3 years ago today my little boy started breathing without the assistance of a hole in his neck. It was a big step that hardly seemed to phase him and today he knows why he has the scar on his neck but doesn't really remember having the trach. He has been very interested in what he did as a baby though so we have been talking about how he was born and he was very sick and he stayed in the hospital for a long time. For many parents a trach is something that is feared, a last resort. To me the trach was a life saver because without Milo would not have survived. I welcomed it into our lives (I pushed the doctors to do it sooner rather than later) and was a bit apprehensive when it went away. Life has been a little simpler for the last 3 years but I cherish this piece life saving medical technology. I wanted to find a way to "honor" Milo's trach. On the day his trach was removed one of the respiratory therapists at the hospital said I should bronze one of his trachs and honestly I looked into that but at $120 is was a bit cost prohibitive. For a long time I pondered how to creativly and stylishly display a trach. ***For those who are not familiar with trached kids I thought I should explain how I ended up with multiple trachs to use. Tracheostomy tubes (trachs) are removed and replaced (very quickly) every week or two. The old trach can be cleaned and sterilized. We reuse the sterilized trachs a couple of times then I saved some for crafting later.*** Christmas 2009 I turned one of his old trachs into a Christmas ornament for a favorite nurse who was moving away. While it turned out cute I wanted something I could display year round. About a year and a half ago I finally came up a great idea. I incorporated an old trach and a trach chain (that was never successful in keeping Milo's trach in) along with some charms, beads, and personalized charms. I ended up with two different treasures. Milo Trach Treasure: I selected silver square alphabet beads, a blue ball chain (like dog tags use) and colored metallic beads. I found all of these at Hobby Lobby. I cut the chain to an 8 inch length and layed out the design I wanted to use. I then slid the beads onto the chain and threaded the chain through the flanges of the trach(where the trach ties go). The tricky part is balancing the weight of the beads to keep the trach from tipping forward. I tried gluing the chain to the cannula but hot glue wouldn't stick to the trach. I ended up using a piece of thread to tie the chain to the cannula. If you look close you can see the knot beside the clasp. The finished product hanging on an ornament stand. Placed on a bookshelf with the photo albums for all to see. Believe Trach Treasure I wanted this one to be a little more elaborate. I used the trach chain that we tried to use with Milo's trach but it just couldn't keep the trach in my active boy. The balls on this chain are bigger than the store bought one I used for the other treasure so I had a harder time finding beads but I ended up discovering the blue beads at Hobby Lobby, since then I have seen this style of bead at many different stores. I also wanted to incorporate the date that he got the trach and the date his trach was removed. I found an Etsy store that would custom make these rectangular pendants for a reasonable price. I also got a round pendant with Milo's name from a different Etsy store. I found a package of charms with a little boy and the word "Believe" that I knew I had to incorporate. I decided to use the chain in the same length my son wore it and it turned out perfectly. I chose a layout for all the beads and charms then threaded the chain through the trach's flanges. To balance this one I found that if I placed one of the balls from the chain in the end of the cannula things balanced out just right. You might have to play around with the chain to find the right balance based on what chain, beads, charms, etc you use. To hang put sewing thread or fishing line through the flanges and tie together. The finished product: This treasure is hanging in my bedroom. I had a set of cubes on the wall just waiting for something to fill them. I attached a little clear Command to the inside top of the cube to suspend the trach in it's own little cubby. I just love how both of these turned out. Crafting with unusual items is always a challenge but the result can be extraordinary. What unusual items have you turned into treasures?
From foundations and grants to books, bikes and benefits - a big list of places that can help out with free stuff for kids with disabilities
The one thing you are never told when you receive a life changing diagnosis for your child; is that everything will change. Nothing will...
