Declan's Toys

Declan with his care package we received from FSMA

You may think regular baby toys would work just fine for babies with a neuro-muscular problem but you would be wrong.  A lot of those toys are too heavy for babies with SMA or SMARD or a neuro-muscular disease.  These babies usually have what is called hypotonic. Which means they have less than normal tone or tension in their muscles.  If they are like my son they can't lift a heavy rattle, it's got to be light weight and thin so it can fit into his small palm.  So I wanted to give families a list they can use for their child with this (bleep bleep) disease.
      Thanks to Families of SMA they sent a care package full of fun goodies for our son.  Tons of stuff that will help with Declan's development.  Remember if you are newly diagnosed with SMA you can go to families of SMA and they have tons of info about this disease, and will help with any decision you make. Oh did I mention they also take donations to help find a cure...  Just in case you weren't listening before.  I should mention that FSMA got a lot of their donations for these care packages from families that have or had a child with SMA.  You can read about one such family here.
      SO!  Don't be discouraged of all the daunting tasks that will come your way, just take one day at a time, or in some cases one hour at a time, and remember to breathe.  After all, toys are not going to be your child's favorite thing in the world.. you are!  They will love you and all you have to do is love them too.  But since I haven't figured out to have 10 arms yet I am guessing neither have you.  Yes, back to this list that I never seem to write about.
     (1) These babies love mirrors!  Yes, they love to see things behind them, and love to look at themselves.  Yeah, a little vain but can you blame them they are beautiful! 
     (2) Anything with texture.  Not just soft things either, and since you don't have to worry about the baby putting things right into their mouth you can use things around the house.  Tissue paper or cellophane work great.  Just put it under their hands so they can "rake" their fingers across it. You use texture to stimulate your baby since they can't find these things on their own you need to be the one that shows them.
     (3) Fisher Price projector, you can find some that play music or nature sounds, but it helps children that can't sit up be able to lay down and look on the ceiling.
     (4) Little foil balloons, you can get them at walmart for a couple of bucks.  EZ to fill no helium required, and the straw makes a great handle and is light enough for them to hold on to.  Regular balloons would work also just be careful of it popping in their face.
     (5) Pinwheels,  they shine in the light and spin in the wind, what more could you ask for.
     (6) Fisher Price Swing for infant/toddlers, it reclines enough so your baby doesn't get that pressure on their belly.  You can put it right on your swing set like us or a tall tree or even make something with wood to use it inside. (I am thinking that will be our next project so Declan can use it inside for the winter.)
     (7) Bubbles!! I mean get real what kid doesn't like bubbles.  But go the easy route and get a bubble machine, easier on you. 
     (8) Oball (you can look it up on google)  This little ball is very light weight and has holes all over so my son can grab on to it.  He is already loving this toy FSMA sent to us in the care package. 
     (9) Links.  They are great to link things low enough to tug on.  Can be used to attach various toys to swings, car seats, etc.  Also can be used as teethers, as regular teethers may be too heavy.
    (10) Finger puppets,  lets not forget we need to keep those minds sharp and what better way then to play.  You can use these finger puppets to tell stories or sing songs with your baby.  They will love the interaction.
    (11) Feathers, they are light weight and the babies can grab onto them.  Not to mention it is another texture that I am sure the babies will love.
    (12) Baby print molds.  Ok so this isn't really for your baby but more for you.  For those long lasting keepsakes that you will cherish.
    (13) Cat toys.  Yes you heard me cat toys are small, light weight, and they have bells inside.  They fit right in the palm and some even are crunchy to give them that texture.
    (14) Baby Einstein DVD, Books, & CD collection.  That's right these babies are already Einsteins but why not add to their knowledge with these cute little characters.
    (15)   Beanie Babies.  I say "finally these things come in handy."  You can use them to prop up your babies arms so they can use them and also to prop up any other part of their little bodies.
    (16) Light weight rattles.  Make sure they are skinny enough around too so they are able to clasp on.  Most baby rattles now are too fat around, so one of my helpers from early intervention found this mini maracas at a party store.  You can go to this link to look at them mini maraca.
    (17) Silkie blankets are soft and warm and again adds another texture to their list.
    (18) ABC Painting Sponges.  Super light weight, they are washable, and you can use them with paints, or flour, anything really.  It helps their development to get down and dirty.
    (19)  Sheep Skin Blankets.  Example Bowron Sheepskins (google it) The sheepskin blankets have been found to help with preventing tissue breakdown and to reduce the need for turning children that cannot turn themselves.  These blankets can make it more comfortable for any kind of prolonged positioning. In cold weather, the sheepskin blanket will help keep your child warm and in hot climates, the wool absorbs moisture leaving your child drier and more comfortable.  (My son loves his)
    (20)  Baby plastic spoons may be light enough for your child to bring it to their mouth.
    (21) Little flags, they have a small handle and are light weight and your child can watch it wave in the air.
    (22) Bumbo with tray.  I know recently these were put on a recall, but with SMA/SMARD babies I don't think we need to worry, our babies can't move anyway.  So I don't think they would be falling over.  Just remember to do as it says on that back sticker and not put your child up on a table or counter, cause yes they can fall.
Oh and don't use it in the bath tub, I heard one person did this and I thought it was the dumbest thing in the world to do, the bumbo floats you doof. 
     (23) A Little ball or even a yoga ball.  If your baby is like mine they don't like tummy time.  By having these you can use them with your physical therapy time.  I suggest you have your OT (occupational therapist) show you exercises you can do that will stretch their bodies and hopefully gain strength in their trunks.  Sometimes gravity is your friend and will help you with your exercises.  (picture below)
     (24) Boppy pillows are great for tummy time, and to get them to work on their head control.  Hopefully yours like it more than mine does.
     (25) Baby toys that vibrate.  There are quite a few out there and I am sure any of them will work.  We have some that you pull a string and also ones that are kind of like a ball, but it is a little heavy so you have to push the button but he careful those things are kind of slippery... Let just say Declan is a little weary of that toy now...
     (26) Glow worms.  My son loves his.  They light up and play music, it is a perfect comfort doll for you baby.
     (27) Pedi-wrap braces. If your baby has contractors like mine then you are probably working on his legs and arms by stretching.  Talk with your PT (physical therapist) about getting these braces for your child.  Hopefully your insurance will cover them.  They have helped my child.
      (28) Water Noodles, you can normally get them at walmart during the summer for under $2.00.  Stock up because you can't get them in the winter.  You can use them for bracing your baby in things like chairs or toys, like the saucers.  You can cut them and mold them around your baby to get that extra pressure off of their stomachs, and give them the support they need.
      (29) Baby swim neck collar.  Yeah they look funny but for babies with this disease they are great to use in the water.  Water therapy provides zero gravity exercises for you baby.  You may have to use weights on their ankles so the legs don't float to the top.  You want to use warm water 90 degrees - 100 degrees.  But for babies that aren't able to move their limbs the water soothes them and helps them work in a zero gravity environment to build up their muscles.  The hard part is finding a pool were it isn't public (germs) and it is warm.  Wish list for our next house is to have a heated pool.  Hot tub could work just watch the temperature. 
       (30) Bouncer and Saucers.  The bouncers vibrate and play music, they recline enough for your baby.  Saucers let your child be in the standing position. Even though they can't stand it is still good to put them in those positions.  You will most likely have to use the water noodle so they are stable in it.
       (31) Swing and Playmat.  Swings you probably get, a lot of babies like swings, ones that play music are great.  There are tons of playmat on the market now.  If you can find one with an attachable mirror that would be useful, and don't worry if the toys are too high you can use your "links" to give them more length. 
       (32) Body Pillow.  Of course you can't use the adult size pillows but you can make them if you are handy with a sewing machine.  They are used to help prop up your baby on their sides or under the legs.  Make them small about infant length (24" +/-) and fill with stuffing to make them soft but not to hard. (please note: these pillows are meant for positioning purposes only and not meant to be used as an actual pillow for under your child's head.)
       (33) Radio Flyer Wagon.  Once the babies lose muscle tone and cannot adequately support themselves or lose their swallow and must remain horizontal, the wagons are beneficial for transporting them around the house, yard, doctors' offices, etc.  The babies love to be pulled around in the wagons and seem to me more comfortable to them rather than being picked up and carried.  Particularly after they become more hypotonic.  Attachments can be added to the wagon like favorite toys, tie balloons, or feeding bags.  For comfort, you could use egg-crate foam, memory foam, or the sheepskin blanket.
        (34) Latex nipple tops.  If you find your baby having trouble latching on to the silicone nipple tops or binkies. Try latex tops.  We had gone through so many tops trying to find the perfect one for our son.  It was by chance that I tried latex and he finally drank a whole bottle.  The silicone became too slippery and was hard for him to latch onto.  Latex has texture that is easier for them to latch onto.  He started doing better with his feedings.  His favorite is the Enfamil standard flow nipples.  Hopefully your baby isn't as picky as mine, it took a lot of trial and errors to find the right one.
        (35) Wind Chimes can be hung outside on a swing to be played by the wind.  Your child could also use other toys such as the balloon on a stick to make the wind chimes move and play music. 
        (36) Put stickers on your nose and have your baby pull them off.
        (37) Car beds make traveling more safe and comfortable.  Car beds are very important for transporting Type 1 infants.  The FSMA Equipment pool may have some available so please contact Colleen at equipment@fsma.org for more information.
        (38) PVC play gym.  Since most SMA type 1 babies need to lie on their backs, it can sometimes be hard to adapt toys to suit your child's needs.  One way to help entertain your child while they lie on their back is to build a PVC Play Gym which will allow you to hang toys and objects directly above your child and will help them play independently.  This PVC play gym can be completed in well under 2 hours and costs less than $30 using basic items you can find at your local hardware store.  I will add the "how to" in a later post.
        (39) MUSIC!  You can go to www.playlist.com and make a playlist for free.  Of course you can make one just for you with your favorite music, but I suggest making one for your baby too. With calm, soft, inspiring music. I made one for us called Baby Calm you can go HERE to listen to it. 

I am sure I can go on and on about these things.  Believe it or not I received most of these items through Familes of SMA so again if you are newly diagnosed with SMA/ SMARD you can go to families of SMA   you can receive an information packet and a care package. DO IT!
If you have anymore suggestions or know things that you have found to be useful go ahead and comment, and good luck to you all.  May we find a cure soon!

therapy time using the ball and a mirror.