Can't Live Without

We did a "can't live without" post last year, and it was such a hit that we had to do it again. Here are all the items that the kidz krew just couldn't do without!....

From April:

Caleb and I love his stroller from adaptive mall. His wheelchair is so heavy and difficult to get in and out of the car, but our nifty stroller has made it a lot easier for us to be out and about!

We also love his new swing from the make a wish foundation! Caleb doesn't have a lot of head or trunk control, but we're able to tilt it back so it can give him all of the support he needs. I'm not sure where they got it, but if you're interested, let me know and I'll find out!

Caleb was approved for a sleep safe bed about 9 months ago. It has been a big blessing to us. The top and bottom of the the bed will raise and lower for better positioning. I love being able to get Caleb elevated to help him be more comfortable with his continuous feedings and his ventilator at night. The see- through guard rails also make it easy to keep an eye on him even when they're up!

And last but not least, my favorite item is my cozy rocking chair. Caleb and I have had some great "heart to heart" conversations when we rock together.

From Brandi:

It took me a while to come up with three "must haves" for special needs children/moms. I wanted it to be perfect. I wanted it to be inspiring.

I settled on real!

For Matthew one of our favorite "must haves" is our Water Way Babies.

http://www.waterwaybabies.com/

This thing is AMAZING. It has allowed our sweet guy that has NO head control to feel free in the water. He loves it. We actually heard of this product through our therapists. They gave us the website, and after watching the video we were SOLD. Matthew has never been so free and mobile then when using this product. It was such an amazing experience to watch our little guy "swim" with freedom!

For Mommy, my must have is "Chicken Soup for the Soul: Children with Special Needs."

http://www.chickensoup.com/default.asp

This amazing book will help get past those bad days and start each new morning with a refreshed sense of spirit. I have read, reread, and reread this again. It always comforts me when my world seems to fall apart. It is definitely the equivalent of chicken soup on a cold rainy day.

For Autumn our favorite thing is the Wingbo. She loves this swing. It is intended for children to be able to swing themselves while in a prone position. It really helped Autumn gain control of her trunk muscles.

http://wingbousa.com/

From Erin:



The Angel with the Golden Glow
A Family's journey through loss and healing
by Elissa Al-Chokhachy Illustrated by Ulrike Graf


This book was suggested to me shortly after Charlotte passed away and I ordered it online without really knowing anything about it. As you can probably guess, it is most appropriate for those who have lost a special child, but is also good for siblings or families dealing with the inevitability of loss. Without giving too much away it tells the story of a special spirit chosen to be born into a family who discover soon after that he will not be with them very long. He is confused at the sadness of his family as he knows he was born for this purpose. The hardest thing for him was leaving his best friend behind in heaven when he was born. This is my favorite part--of him watching from above as his family and friends release balloons in remembrance of him.



It has a wonderful, comforting ending and teaches that everyone has a purpose and families are eternal in a nondenominational way. (it is not written from any particular religious point of view but of course is about "angels" and God and our purpose in life.) We have used it in family nights and with our children but I still can't get through it without crying.
Because most of us with special needs children know lots of other families with special needs children, we almost always are faced with the issue of loss and heaven either within our families or with our friends. I'm grateful my kids will be familiar with this book growing up to help them remember their sister(s) and recognize their special connection to them.



From Janet:

One of the most regularly used piece of equipment is the Manatee Bath Seat here It is light weight and can be easily lifted in and out of the tub.



Another can't live without piece of equipment is Hailey's Kid Kart Xpress this site doesn't have images but my son and daughter in law get alot of Hailey's equipment here to see images you can also go here. This is easily used for a high chair as well as a stroller.





From Jenny:

1) Avent Sippy Cup: Sammy can't drink well from any other cup. The soft spout, the handles...it's all good for her and the one thing she can independently drink from.

2) Electric Toothbrush: It doesn't matter what brand you have, but I get one with a smaller head to fit in her small mouth. Brushing her teeth has always been a chore. She bites the toothbrush, so we don't get much brushing done. I want to keep her whites pearly if I can. So, her OT suggested an electric toothbrush. She loves it. She'll open her mouth for me while I work in there. The vibration really makes a difference.

3) Chewy Tube/Chewy Necklace: Yes, sometimes these can be disgusting because they are collectors of saliva. BUT, sometimes she just needs to chew, and I'd rather have her chew this than her fingers which are perma-RED from her biting them. It also keeps her from chewing her clothes, which is a bonus. I have found good prices at this site.

From Kristina:


1.) Child Rite seat. www.childrite.com. We use this everyday at home, bring it out with us for library story time, and Emma is also using it at circle time at school. It puts her on the same level as the kids when sitting on the floor and she doesn't have to have Mom or Dad sitting right next to her so she won't tip over (she can't sit independently yet).



2.) The iPad. www.apple.com Emma needs someone to help her play with her toys, but sometimes she has to play independently. We have loaded the iPad with lots of stories and games and Emma can play with them on her own. We are also using the augmentative communication program Proloquo2go on the iPad to give Emma more access to expressive language.



3.) Kids Up FAST adaptive stroller. http://www.kidsupco.com/FAST.html This stroller is a breeze to push, gives Emma enough support to sit comfortably for extended periods of time, and is easy to adjust.


From Melissa:

One thing that has been a necessity in our family is the jogging stroller. We live next to a trail and couldn't go as a family because Brody always got to tired. But with our jogger we can run and he can come. It is great. We have been able to do active things together that we never thought were possible. He has to be able to rest when he feels exerted, so this is definitely a must have.

Another must have is the doctor binder. I can't tell you how many times the doctor has asked for a record and I happened to have it on hand. It has sped things up so much, especially when we see genetics and they order tests. I have multiple tabs, questions, notes, cardiology records, primary care records, and genetics. I have even used it for his school purposes.

From Tara:

Without question, this space blanket that was less than $2 on ebay was one of the very best investments I've ever made. Chloe LOVES that it's reflective and noisy. It is sensory input heaven, folds up tiny and is easy to take around.... We love it!


I don't know how much money I've spent trying to find toys that will help entertain Chloe, but I've found that stuffing regular things around the house into decorative wicker baskets works just as good as almost anything else. It looks cute when I don't get a chance to actually put it away in a closet where it belongs, which makes it easily accessible. In the basket you'll find things ranging from hair bows, make-up, plastic spoons, crayons, curly ribbon, tissue paper, water bottles, TV remote, keys, etc. It's so simple, but this is truly Chloe's favorite thing! She gets so happy when I ask if she wants me to get her basket. What can I say -- I live to make her happy, so she gets the basket quite a bit!!!...


By now, you may have picked up on the fact that Chloe LOVES (and needs!) sensory input. And one toy that she simply can't live without is a clacker. We have many clackers, lots of colors and sizes. We have a fun one for Halloween that is eyeballs! lol! But our favorite one is Ollie the Octopus. He's just plain cute!....



We like to be outside as much as possible. We love vitamin D! But poor Chloe has a hard time keeping most sunglasses on. These sunglasses with Velcro straps are heaven sent! I used to get them at Target, but haven't seen them there for awhile, so I recently got a pair for a decent price at Play Outdoors online.

Last but not least, we couldn't live without our Ninja food processor. I get to take my Weight Watchers recipes that are low-fat and blend them up with added oils and butter to make them high-fat and high-calorie for Chloe. We have to make every bite count for miss skinny pants! I love this thing because it is versatile, easy to clean, and just all around cool. It is very user friendly and makes it easy to get food to the exact consistency that is easiest for Chloe. It's a definite must-have item for us!




So, readers, what are your "can't live without" items???

Please share, we need Christmas gift ideas! ;)