Adventures of an almost spica cast

So Elijah had his surgery a little over 3 weeks ago and as you can see he has been casted from the top of his thigh to his toes with a bar that connects to both legs.  Well, things got pretty interesting before we even left the hospital.  We waited all day for the special wheelchair to be delivered to the hospital so we could take Elijah home.  It turns out there was a miscommunication somewhere and the wheelchair was actually deliver to our house instead of the hospital.  Thank God my mother in law was there when it arrived.  So we decided to go home without it and just carry Elijah to and from the car and house.  They sent us home with a special spica cast car seat so Elijah would fit in the car.  Oh my gosh this seat is huge!  The seat doesn't have raised sides on it or arm rests so Elijah could fit into it (his legs are in a wide spread position).  We had to push the passenger front seat all the way forward because Elijah's legs stick straight out.  Luckily the seat is very padded and looks very comfortable for him.  The hard part is actually getting him in the car or through doors without smashing his toes.  We have to angle him sideways.
    We had to get a little creative with keeping him entertained because for the first 2 weeks he did not move around very much.  We got him some new movies, a baby gym to place him under, and some new toys to hang from it.  After 2 weeks of resting and constant repositioning he was able to move around much more and sit up, even roll to where he wanted to go.  We started taking him outside for a change of scenery.  We take him on walks and swing on the porch swing.  He really enjoys it.  We found that it is much easier taking him around in the wagon rather then the wheelchair.  Since we weren't here for the delivery we pretty much had to figure out how to use it on our own.  It wasn't very kid-friendly.  There wasn't any kind of guard on the wheels that would keep Elijah from sticking his hand through them.  He actually got his elbow stuck in the wheel and it scraped it up pretty good. 
     So eating, sleeping, and bathing are all a little bit different right now.  He can't fit in his highchair right now so we have started pureeing his meals again for now.  It is easier for him and keeps his casts pretty clean.  (he is a very messy eater)  At first we had Elijah's mattress on the floor next to our bed and he would sleep there.  We would change his positioning every 4 hours.  After he started to be able to move around more I would wake up and find him stunk in between the mattress and the wall and buried on pillows so we had to move him to our bed to be safe for now.  Of course we have to sponge bathe him.  He doesn't mind so much.  He gets just as excited as if it were a regular bath!  He loves the water! 
     We decided to let him go back to school this week.  I really struggled with deciding whether or not to take him with such big casts.  I now realize it was the best decision.  After 3 weeks of being stuck at home Elijah was so happy to go back to school and see his friends again!  And it is so nice for me to be out of the house again too.  We did have to get creative with figuring out pants that would work with his casts.  I didn't want to send him to school without pants.  So I took some gym shorts and ripped out the seam in between the legs and put snaps there so we could get them on.  We haven't run into any rain yet but they said if it does rain we can put his legs in a trash bag and tie it at the waist.

      Anyways, so far so good.  I guess the only part that was really hard for us was not being able to explain to Elijah that this is only temporary and that his legs won't be this way for ever.  Over all he has been very accepting.  He has his cranky moments but this really shows how brave he is.  We are so proud of Elijah!

I took this picture of Elijah last spring!

         I took this one this spring!  I can't believe how much he has grown!

My Mom has superpowers?

Maybe some of you that have special needs children can relate.  So I was taking Elijah to school today, Elijah has his cast on still so I had him propped up with pillows in his wagon and I had Madeleine strapped to my chest.  As we are walking up to the school one of the teacher says, "Here comes wonder woman!"  I started thinking how many times I have heard this.  I have been called "super-human," "super mom," or that I have "super powers."  How wrong everyone is.  I am just like other moms.  I get overwhelmed, stressed,  and angry just like everyone else.  I do just what other moms do.  I provide for my children.  My children's needs may be a little different then most but it is kind of the same.  Some have more needs then others.  If my child needs something, I do my best to provide it.  I think we really have it backwards.  I think my son, Elijah, is the real super hero.  He has the real challenges and the obstacles.  He is so determined and strives to achieve his goals everyday.  Maybe I give him some of the tools to get there but isn't that what parents do?  But the truth is I am guilty of the doing this too.  The chances are I am probably looking at you thinking the very same thing.  That mother is a rock star!

A little bit about our bear

Elijah is 5 years old.  He has microcephaly, cerebral palsy, swallowing issues, global delay, seizures, and is deaf.  He has bilateral cochlear implants.  Elijah's cerebral palsy is worse on the right side of his body, particularly the right arm and hand.  He uses a removable cast on his left arm that forces him to use his right.  He is able to sit, crawl, and cruise.  He uses a stander and kid walk daily.  Elijah cannot speak but he is learning to use an eye gaze communication device!  He can eat solids but they have to be soft.  Liquids have to be thickened to chocolate milk consistency.  Elijah is very happy and LOVES to laugh!  He goes to a PPCD program for 3 hours a day and really enjoys it.  He is very social and loves to be around people.  He loves to be in the car and on the go!  He does occupational, physical, speech, and music therapies.  He does swim therapy during the summer and has done hippo therapy in the past.  He enjoys playing baseball and finger painting!   Elijah has overcome so much and we are so proud of him! 

3 weeks ago Elijah had surgery on the tendons on his inner thighs.  They were pulling too tight causing his hip to start coming out of socket. 
They released the tension and casted both legs and placed a bar in between to keep the correct position.  He is doing really well and learned how to sit himself up and is now even rolling around!  He does get very frustrated and bang the casts on the floor trying to knock them off but for the most part has been very accepting.  He only has 2 more weeks in the casts and then he will wear a brace for a few months!  I can't wait to see if this will improve his walking, along with the new AFOs they have ordered him! 

Our son Elijah

This is our son, Elijah, we have called him Bear Bear every since we left the hospital with him when he was born.  Elijah was born with congenital CMV.  This is a common virus that I caught while I was pregnant.  It has very little symptoms so I didn't even know that I had it.  It you have never had this virus before and you catch it for the very first time while pregnant it can pass to your unborn child.  This is what happened to Elijah.  The virus attacked Elijah's brain and nervous system.  We didn't know any of this until he was born and he started showing symptoms.  His blood sugar was off, he had enlarged liver and spleen, very jaundice, failed his newborn hearing test, his head measured small.  He stayed in the NICU for a week and a half until we could finally come home.  We are now parents of a 5 year old with disabilities but with a huge heart and bright spirit!  We wanted to make this blog to share all of our experiences with Dr appointments, therapies, and everyday challenges or triumphs!