Over the last two years, I've spent much of my time (after Conner goes to sleep) researching his diagnoses, therapy options, toys, diets - you name it. This is a compilation of items that have worked for him.
Disclaimer: Please note that these items are ones that work well for Conner. This is strictly my opinions based on Conner's needs. These are links to where I purchased the items and I do not receive any commission if you purchase from these links.
Cuevas MEDEK Exercises (CME)
Cuevas MEDEK Exercises (CME/MEDEK) is a form of physical therapy used to treat children with motor delay. Children whose birth history may place them at risk for motor delay (premature birth) or children diagnosed with down syndrome, cerebral palsy, global developmental delay, hypotonia, chromosomal abnormalities, spinal cord lesions or acquired brain injury may benefit from this form of therapy.
Ramon Cuevas (creator) -Ramon is located in Chile and does CME/MEDEK intensives
The Canadian MEDEK Centre - Conner has seen Ester twice. She is very knowledgeable and so good with Conner.
S.M.I.L.E. Therapy for Kids - Jo-Anne and her team are awesome. Another great MEDEK source in Toronto!
Simona Demarchi - Simona I located in the Toronto area and is Level IV trained. She works closely with the creator, Ramon. We have not been lucky enough to see her yet, but we hope to in the near future.
Locations: Los Angeles, Boston and Sydney
NAPA Center offers intensive programs that may include combinations of occupational, physical and speech therapy. Each intensive is customized for each child based on their needs and goals. NAPA Center offers CME/MEDEK at all locations. In addition to MEDEK, they have neurosuit therapy and Universal Exercise Units. Conner has done one NAPA intensive. We plan to do a few in 2019.
Cortical Visual Impairment (CVI)
Little Bear Sees - This is the first site I found shortly after Conner's diagnosis. This is where I found hope for kids with CVI.
Little Bear Sees book - I strongly recommend parents, family, therapists, etc. to read this.
Elmo and Big Bird Stuffed Animals - You'll quickly learn that it is good to have the same item with your child throughout the day...Something that they are able to see, so that they always have an opportunity to work on vision. We started out with Elmo and Big Bird stuffed animals.
Black Mats - Used to simplify therapy and play area
Vtech Snail toy - Conner loves this and he uses his right hand (weak side) with ease
Fisher Price Bright Beats 3-in-1 Bright Pods - Conner has been playing with these since he was first diagnosed. They know encourage to lift his head up during tummy time and give him something to play with while he works on sitting up.
How Big is Baby Elmo book - This is the first book Conner truly saw. It is also a good book to teach your child to turn the page.
Bubbles - Conner loves bubbles and they provide a reflective quality that many CVI kids need
Multifunctional edge and corner guard coverage - can be used for a variety of things, but we use it to draw Conner's attention to his parallel bars, so that he knows where to place his hands
Clip Lights - these are very bright and helpful when trying to highlight a toy or other item you're encouraging your child to look at
Jingle bell hangers - reflective bells were one of Conner's favorite things early on in his CVI journey
Reflective cat toys - reflective property and small and light enough to pick up for children with physical challenges
Therapy brush - This brush encourages Conner to open his right hand (weaker hand)
EasyStand Zing Stander - Conner tried this stander out first. We liked it, but it was higher up, more medical looking and has a small tray. We found that the Jenx Multistand is a better fit for him overall.
Jenx Multistand - This is the second stander Conner has trialed. We like it better than the first (EasyStand Zing) for a few reasons. First, it is lower to the ground and more at the level Conner would be if he was standing on his own. Second, it is easier to use and the tray is much bigger (allowing more space to play). He handles G-Tube feedings well in it and he actually enjoys being in it. We've seen him strength improve and he is now weight bearing outside of his stander (with balancing assistance from us or his parallel bars).
Leg immobilizers - We use leg immobilizers on Conner's arms instead of his legs. We use them in a couple different ways. First, for weight bearing through his arms. He often does not want to straighten both arms, so these keep his arms in a straight position while weight bearing. Second, we use one to immobilize his left arm to force him to use his right arm (weaker size) more (also known as constraint therapy).
Ankle Foot Orthotics (AFOs)
Grapple - If your child's favorite game involves chucking their toys on the floor, do yourself a favor and buy a Grapple - you can thank me later! This little thing sticks to high chair tables and then you can attach three toys to it. The only issue is that it doesn't stick as well to textured services.
Piano - this piano is red (for you CVI parents) and plays upbeat tunes - Conner loves to play his piano and dance!
Squigs - Conner LOVES these! They make a fun popping sound and it encourages him to use both hands to pull them apart.
G-Tube and Blenderized Diet
G-Tube Babies (G/J), (J), (N/G) and (N/J) group on Facebook
Tubie Pockets - these are a must have if you or your child has an NG tube! The little pocket clips on to your shirt and you can wrap up the NG tube and place it in the pocket. It keeps it from getting caught which can lead to the NG tube being pulled out. It was also really helpful during Conner's therapy and playtime - one less thing to worry about when working with him.
Joseph's Genetic Journey group on facebook - Joseph's Genetic Journey is a non-profit started by a family to "pay-it-forward." They make g-tube pads and belts and send them to rubies across the country FREE OF CHARGE. All you do is fill out a quick form - it does take some time to receive them (They are in high demand and doing all of this for free).
Vitamix - Medical discount available - I love our Vitamix and would recommend it to anyone wanting to transition to a blenderized diet.
Blendtec - Medical discount available - I went with the Vitamix instead because I read that the Blendtec is louder than the Vitamix. Conner is a little sensitive to loud noises, so it was an easy decision for me.
Squeasy Sport Silicone Collapsible Bottle by Squeasy Gear - Conner's blend for the day gets stored in these. The miracle syringes we use (see below) fit perfectly in the top of the bottle resulting in ZERO mess and ZERO wasted blended food. They are a must have for anyone doing a blenderized diet.
O-Ring Miracle Syringe from The Squirrel Store - Yes, this is literally a store with supplies to rehab squirrels, but these syringes in conjunction with the Squeasy Bottle (listed above) are a game changer in the BD world.
G-Tube holder - these toothbrush holders are perfect to hold G-Tubes up to dry between uses.
Calmoseptine Ointment - 2 for 1 deal - helps with diaper rash AND granulation tissue. This can grow around a G-Tube site or really any injury/wound. Granulation tissue is raised higher than the surrounding skin and it is the body's way of trying to heal the wound or injury.
Real Food Blends - We have used these a few times and thankfully insurance covers them for Conner. We have a small supply on hand for back-up and just in case purposes. They did not work well through a feeding pump - it may require watering down some to thin it out. I have not tried them with a syringe, but I imagine it would work great.
Nourish Real Food Blends - I have not tried this blend for Conner, but it is another real food blend option.
Blenderized RN Group on Facebook - This is where I started my research and learned about all of the other items I've listed in this section.
BlenderizedRN - I watched the Blenderized RN's YouTube videos to educate myself on some transition options. There are many ways to make the switch and it just depends on what works for your kiddo (trial and error).
Crunchy Tubie Mom - This is a mom with all kinds of experience that has found some great options for her son. Some of her blogs were very encouraging for me when I started to transition to a BD and when researching SIBO.
Triad - This helped with Conner's diaper rash after his ostomy was reversed
Infantile Spasms Community Discussion Group (on facebook)- This helped me early on in Conner's diagnosis. It is a good resource of information from a parent's perspective.
NICU Milestone cards - I wish I had known about these when Conner was in the NICU. There are many options, so just Google "NICU milestone cards." These milestone cards are guarded towards things your child may accomplish while inpatient (i.e. breatihtng on their own, feeding tube removed, etc.).
Cerebral Palsy Group - Cerebral Palsy Group is an online resource for anyone who has been affected by cerebral palsy, birth injuries, or brain injuries. Their team was created so they can provide answers and all types of assistance needed to help improve the quality of life for loved ones and family members with cerebral palsy.
Disclaimer: Please note that these items are ones that work well for Conner. These are strictly links to where I purchased the items and I do not receive any commission if you purchase from these links. Thank you