Hi everyone! I've created a list full of all the gear, products, and toys we have found so helpful and useful for Luna on her healing and recovery journey! As we find more over time, I will update this list :o)
$ Love Luna and Robyn
Air conditioner extender: Noggle
This is a must have for any family with kiddos in the back seats. Even though we have rear AC vents in our SUV, it gets SO HOT in Las Vegas that these are amazing to flow the AC right to Luna and Atlas. Seriously, I want my own to cool my seat down in the summer lol We have the 8 foot ones in the kaleidoscope print.
This chair has been so wonderful for Luna to be able to sit up right with support as well as being able to recline back for naps. It allows her to be up in a comfy, seated position and be more a part of everyday life with our family. It also opens up to a full sized bed (just a bonus lol)! We have the full size in the charcoal (light grey) color in chenille.
Nest topper: This is a new cover we just ordered for Luna. Now that she's grown so much and is becoming a bigger girl, she needs more support than just the beanbag provides her. This new topper creates more of a chair like functioning and were so excited about it! We have the full sized, charcoal (light grey) color.
Car seat: Clek Fllo
So this was a really big challenge for us to find a carseat that would work for Luna. Through medical/equipment supplies company, we had no luck as there are not special carseats made for rear facing needs, only a flat bassinet type carseat (which she was much too big for) and front facing carseats. We chose this carseat for Luna based off its ability to remove the top head rest portion and that it was wide enough at the head to accommodate her. The company was also extremely helpful and worked with us, sending customized inserts to help her fit even better in the carseat and were even willing to customize the head rest portion for her (though we ended up not needing that). We also chose this carseat in the style made of their wool as it is free of brominated flame retardant, which was super important to us! It also is big enough that it allows Luna to remain rear facing and at a recline for much longer than other carseats. We have the Mammoth color in the flame retardant free wool.
We also use the Clek Infant Thinggy in the matching Mammoth flame retardant free wool and the Clek Mat Thinggy to make sure Luna's fitting perfectly in her carseat as well as the carseat being extra secure on our leather seats with the mat thinggy.
Floor seat: Upseat brand
This is like an upgraded, more ergonomically correct bumbo seat. It puts Lunas hips into a better position to help assist her body to sit up properly. The tray is very easy to get on and off and the back is a bit higher than the jumbo seat.
Free Arm tube feeding assistant:
For all our fellow tubie families out there THIS IS A GAME CHANGER!! Honestly this is probably on of our favorite pieces of equipment. After getting Lunas g tube this past September, we were sent home from the hospital (as I imagine many other tubie families are) with no supplies other than the instruction to use a shoelace or string to tether up Lunas gravity feeds with. This is a ridiculous method and I knew there HAD to be something better out there... in come the Free Arm! The Free Arm was created by tubie parents for tubie families after their own journey with their son Freeman. Luna has the Free Arm Muscle and we are able to bring her feedings everywhere with us! In the car, in the stroller, to doctors appointments, when we eat out, at the zoo, at the beach, I mean you name it and the Free Arm is there to bring tubie feedings on the go or to make feedings much more simple at home.
The owners of Free Arm have provided our Insta family with a special code to receive 20% off the purchase of a Free Arm! Use the code LUNA20 for 20% off!!
This is a product we have used with Luna for her whole life. Grounding provides so many benefits for the body and for healing/recovery. We use the band around her belly or the smaller band (which I couldn't find the link for) around her thigh.
This highchair is perfect for differently abled little ones! It functions as a high low chair, is able to recline fully, is foldable (so great for storage), and pretty light so we are able to bring it with us when we travel and have used it even on the beach!
This is the blue Olof pillow you see Luna using in the Heao highchair. Honestly these are so perfect for little ones with hydrocephalus, the neck bend is thin enough for little ones and we use the wings behind her arms to get her sitting up better and have more control over her head and limbs while in the seats.
This is the red light therapy lamp that we use for near infrared therapy for Luna and for the whole family. This was recommend to us by patients of Hope 4 Cancer Treatment Centers. We love it because it is easy to roll from room to room so we use it much more often then if it was stationary. It also has a remote control and a timer as well as a dial that allows you to control the intensity of the bulb. The bulb is also safe behind a wire protective cage so there's less of a chance for injuries.
We also use these feeders for Luna to try more solid foods in. We like these specific ones because the handles are thin enough for her to grasp herself and they come in different sizes within the same pack so that she can grown with them.
Spoons: First/Pre Spoons
These are the spoons we use when feeding Luna purees and in speech therapy.
Stroller: UppaBaby Vista
We LOVE our UppaBaby Vista. I know the price tag is INSANE, but there are so many gentled loved ones out there that you can grab for a fraction of the cost of a new one (or possibly purchase the Mockingbird, which is very similar .Though I have not used this stroller so I am just going off of their claims about it being very similar). We were gifted ours by our wonderful friends in Indy before moving back to Vegas. For Luna we originally used the bassinet attachment with the stroller but as she got bigger, we switched to the toddler seat. The seat is so customizable that it honestly works so well for Luna and her specific needs. The leg/foot rest is adjustable and so is the back/head rest area so you can fully recline or fully sit up and everything in between. We used this stroller, lined with all Luna's feather pillows before and after her shunt surgery. Now we use it with a plush stroller liner as she no longer need the extra support of her pillows. The carriage basket at the bottom is big enough and sturdy enough to have held an oxygen tank, a duffle bag for hospital stays and the stroller itself is sturdy enough to also hold a big and very full diaper bag over the handle bar. It's also very easy to get in and out of the car and folds up very nice. One other very nice thing about this stroller is its ability to very easily turn into a double stroller!
Or for a cheaper knockoff version I’ve heard wonderful things about is Mockingbird.
This is what we now use to cushion Lunas stroller and give her a bit more support and comfort!
This is the blue bench you see Luna using in physical therapy. Though we do not own it ourselves, it would be a wonderful addition to our gear someday.
Tubie pads (search this on Etsy)
We have purchased from a handful of shops on Etsy. They're so personalized I'll let you guys find the company you love! Just search "tubie pads" or "g tube pads".
This is the sensory tool we use during speech therapy!
Toys for Therapeutic Play/Fun:
Magic Touch Toys by Baby Einstein
- We love these because you only need a very light touch to engage with the toy, so its perfect for many differently abled kiddos!
Toys We Use in Therapy
This is one of Luna's favorite toys! It has wonderful classical music and is one touch, easy to engage and interactive.
Other Favorites of Luna's
A completely non toxic paint we use for finger painting!
Another very light touch toy that Luna is able to use all on her own.
A great sensory book series
One of the first toys Luna really engaged with after her shunt surgery. It's easily positionable in bed for children with mobility limitations.
- Leefy Organics Turmeric Tincture
This company is kind enough to provide our Insta family with a discount code! Use the code "LunasMama" for 15% off first order!
- Probiotics (for breastmilk fed babies only):
Evivo brand (click the link to get $10 off your first purchase)