Elijah update

I just wanted to give an update on Elijah because I haven't written in so long. We are still having his vitamin D levels checked every couple months and he will see the endocrinologist in August. His levels are still low. Elijah has been having some kind of pain for months now and he is constantly reaching around to the back of his head. He has had a few seizures, his sleeping patterns have been off, he is off balance, and doesn't move around as much as he used to. So we have been referred to many different specialists to try and pinpoint the problem. First we saw the ENT to make sure his ears were okay. Everything was normal so we saw the eye dr. next. He did have irritation in both eyes. The dr. told us he basically has "acne" of the eye. So we gave Elijah eye drops for a week and we were told to wash his eyelids with baby shampoo everyday and it should make a big difference. The next stop was neurology. The neurologist ordered a 48 hour in home EEG. This will happen in a little over a week. If it shows anything we may need to do a CT scan of the brain. Swim therapy has started again and Elijah was so happy to be back! This year we bought a waterway babies neck tube. It has made a huge difference in what he is able to do in the water. He actually tried to get around on his own! It gave him more freedom.

Physical therapy update

   Elijah has been seeing a new physical therapist for a few weeks and things have been going great!  The therapist has 25+ years experience and she worked for united cerebral palsy for 10 so she is really knowledgeable.  She really knows how to get Elijah moving and he responds really well to her!
   Last week she showed me a really cool way to get him to practice his standing and do good weight bearing.  She had him stand in a corner and she sat cris cross apple sauce style right in front of him so they were face to face.  That way he couldn't escape.  She let him stand in the corner while she played patty cake games with him with songs.  He loved it!  It got him using his hands and arms too!  She also worked on trying to get him to crawl one leg at a time instead of doing the bunny hop that he has been doing.  So she would follow behind him and hold one foot down at a time and keep switching off that way he would really do the motions of one leg at a time.  He did really well.
  Today she took him into the big gym!  He worked on crawling up steps and backing down them properly instead of trying to leap head first to get down.  He did a lot of cruising between furnitures and walking with assistance.  He actually got to walk on the treadmill for the very first time today!  It took him a minute to figure it out but after he did he did a really good job!  She told us that he should walk one day!  (best news!)  That based on what she has seen there is no reason why he wouldn't!  It was a really good day!

They Will Skate Again 5/5/2012 Irving, TX

On Saturday the fifth we took Elijah to an event called They Will Skate Again.  It is hosted by Life Rolls On and was organized and presented in part by Rise Adventures. The event happened at the skate park at Lively Pointe Youth Center.

Here is the bear being fitted with helmet and pads to prepare for a fun day! Today's event centers entirely around skating. LRO also holds watersports events that feature water skiing, kayaking and many other activities!

An amazing group of volunteers included local teens, corporate volunteers, and local skaters. They guided participants up and down ramps, and those more independently mobile got chances to handle the park on their own!

                                                                                                                               

Elijah got to meet Aaron Fotheringham, Pro wheelchair skater!

Bear had the best time! We'll definitely catch this next time!

Special needs poem inspired by our bear

You say I'm outside of the picture frame and you are all in

You say that I am different but you don't know the person within

People look at me and may think I am broken

I can't walk, cannot hear, no words have I spoken

You point and you whisper, you laugh and you stare

Sometimes you pretend that I'm not even there

But what you do not understand

Is I am perfect just as God planned

My smile is the sun on a cloudy day

I'm stronger than you think in every way

I try to speak no one understands

I make loud noises and shake my hands

Some people get scared and others turn to see

But that's how I talk that is just me

I may act different than the average bear

But I'm in the picture frame I'm definitely there

I work hard every day to complete just one task

Even if I need help I cannot ask

Sometimes it’s a struggle its hard and unfair

Don't say I'm not in the picture frame that I'm not there

I may not be the same as you

And do all the things that you can do

I have a purpose much bigger than being inside the picture frame

I am the wood, I am the grain

I give the world something not many people give

I give hope and courage in the way that I live

I hold it together, I'm beautiful and strong

I'm the frame not just the picture, I definitely belong

Written by:  Karen Grinstead and Julie Cantu

Orthopedic follow up

Today Elijah had a follow up appointment with the orthopedic Dr. to look and see how his hips are looking after the surgery.  He also wanted to take a look at Elijah's brace that he has been wearing for bedtime.  The assistant took an x-ray with the brace on with his legs in the frog position to check and see if the brace is doing it's job.  She also took an x-ray with his legs straight to check if the hips are still uncovered.  The x-ray with the brace showed that both hips were in socket so it is doing it's job by keeping them in place.  The x-ray with his legs straight showed that the left hip is in socket and that the right one is still uncovered.  Which I didn't expect because the left leg was worse before the surgery.  So basically he said that it is very likely that Elijah will need a bony surgery in the future.  He said that the surgery he just had would probably give him a couple years before the bony is needed.  He also told us that the brace will help and that the more he walks the better.  It will help shape the hip into the cup shape to help keep the ball in socket. 

We also heard from the pediatrician.  He spoke to an endocrinologist and they scheduled a bone density test for Elijah because his vitamin D is so low.

Back to speech therapy

   Today was Elijah's first day back to speech therapy since his tension release surgery.  It has been over a month!  I really thought Elijah was going to have a rough day, it being the 1st time back in so long, but he ROCKED it!  He always amazes me!
   Of course he worked with his eyemax.  If you don't know what that is I will explain really quick that way it isn't confusing.  The eyemax is an eye gaze communication device.  It calibrates your eyes and lets you make choices depending on what you look at.  It is kind of like an i pad but bigger.  It has buttons on the screen that you choose with your eye gaze.  Basically your eyes are the computer mouse.  You stare at what ever button you want to choose and it slowly fills red from the bottom to the top.  When it fills all the way to the top it selects the button and says the word for you.  It is really cool!  But you do have to keep your eyes in a window for the device to read them properly.  It tells you if you are in the window by 2 little lights on the bottom.  If they are both green you are in the right position.

   Elijah was a little cranky at first but I brought some new toys for him to choose with his box.  So after he saw the new buttons for the toys he perked up.  He went through all of the buttons and played with all of the toys.  We added the pinwheel button last.  That is his favorite toy.  We showed him the pinwheel first.  He reached for it but the therapist told him, "no, you have to tell me first."  He immediately looked at the device and found the pinwheel button.  He stared at it, the button filled red, and it said, "pinwheel."  So she gave him the pinwheel.  After letting Elijah play with it for a while she took it back.  He got a little mad and started banging the table.  The therapist decided to change the positioning of the buttons to make sure he would really look at the button of the toy he was wanting to play with.  He looked and once again found the pinwheel button even though it was in a different spot.  We cheered and gave him back the pinwheel!  He smiled and clapped his hands!  He also did very well with keeping his eyes in the window for the device to read them.  He really didn't make the connection before but today!  He was really concentrating on holding his head very still to make his selection.  So he had a very good day!  It is so good to be back! 
  

Tooth fairy

   Elijah lost his first baby tooth yesterday!  It was loose for a while.  We actually had to pull it because it was leaning all the way over and Elijah, being special needs, could have choked on it or swallowed it.  He did really will though!  We told him it was okay because the tooth fairy was going to come get his tooth and leave him some money.  We decided it probably wasn't the best idea to leave it under his pillow so we made him a special box to put on his night stand.

So we showed him where his tooth goes and we left it there over night.  In the morning we took him over to his box and opened it and he found 2 dollars!  He was very excited!  We let him put it in his piggy bank.