EEG Results

  We got the results for Elijah's EEG and it didn't show any changes.  It didn't show any seizure activity.  It did show abnormal activity on the side of the brain that was more affected by the virus.  So the next step is to have a CT scan done of the brain.  The only problem is that he has so many "artifacts" in the brain that it will be hard to see anything.  It also doesn't show the back of the head as well and this is where he seems to have the pain.  So hopefully that will be enough.  If it doesn't show anything he will get with our ENT and schedule to have his magnets removed from his head and do an MRI.

48 hour study/ in home EEG

  This morning they came to hook Elijah up for his 48 hour study.  The whole process took almost 2 hours.   First they set up 2 video cameras.   One where he will spend most of the day and one in the bedroom where he will be sleeping.   It took 3 of us working together to get all of the electrodes on his head.   Elijah didn't like it at all.   They used a special glue and taped them onto his head.  They wrapped it up but I know it will be a struggle to keep it on. They put 2 electrodes on his back.  (They really go on your chest but they decided to put them where it would be harder for him to reach. Well, he already pulled one off before they left so we will see how that goes.)   They put a protector over the wires because Elijah likes to chew things.   Everything else goes in a backpack that he wears on his back.   So now I just have to try and keep him in front of the video camera.   I have to keep a log of everything he does.   Tonight at bedtime we have to dress him warm because he can't sleep with any blankets.

  He did really well the first day and night.  It was a little challenging keeping him in front of the camera but he got to watch movies all day so it kept him pretty busy.  The second day Elijah decided he had had enough.  He was very angry that he still had his head wrapped and had to carry a heavy backpack.  He kept pulling the wrap off and I had to keep putting it back on.  It became too hard to do by myself so my mom and my oma came to help.  He was happy to see them!  

     That night he pulled 3 of the electrodes off of his head.  I had to call the tech's cell phone and she had to come and put them back on.  This was after 10:00 p.m.  We were so tired.  He slept through the night but he woke up before I did and pulled the wrap off again!  Luckily all of the electrodes were still in place.  The tech came that morning to take everything off. 

     I put a lot of conditioner in Elijah's hair and let it sit for 10 minutes.  Then I washed his hair 4 times.  He still has some glue in it but it looks a lot better.  So glad it is all over with.  Now we wait 2 weeks for results.

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.

Lab results/OT evaluation

   We got Elijah's lab results and he has low trileptal levels so the Dr.  increased his morning dose.  Hopefully this will control the seizures.  The blood work also showed that his vitamin D is still low.  He will be referred to an endocrinologist.  We are just waiting on a call.

  We had Elijah's occupational therapy evaluation today and we are really excited to get started!  They went over what he could do and what we expect him to learn with the therapy.  The therapist is going to look into getting him a soft splint cast to use for his restraint therapy instead of his hard cast.  She is also going to check with our insurance and see if we can get him a seat like the one above for eating.  It would come with a tray.  He is getting too big for his highchair.  We also discussed working with his communication device.  We would like for him to get better with controlling his hand so he can go back to using the buttons instead of eye gaze device.  It would be so much easier for him to carry his ipad around with him.  The eye gaze device is too big and heavy.  We also need to watch his right hand and see if it is a fist when he is sleeping (I don't think it is).  If it is we need to get him a splint to sleep in that will keep it open so it doesn't cause other problems.

Hip brace to wear at night

   This morning we had an orthotic appointment and they delivered Elijah's hip brace.  It was a very long appointment.  We were there for 6 hours.  They had to make a couple of adjustments while we were there.
   We have to slowly introduce the brace it to Elijah.  30 minutes on 30 minuted off, 1 hour on 30 minutes off, 2 hours on and 30 minutes off, and so on.  Each time we take it off we have to look for red marks.  If the red marks last for more then 30 minutes we have to go back and get it adjusted.
    He will wear the brace only at night to keep the tendon stretched while he is still healing.  He will do this for a few months.  So far we have seen no red marks and it doesn't seem to bother him too much!  

Labs

   This morning we took Elijah to the lab to get his blood work done.  They are checking his trileptal levels they would like them to be in the 20s.  They are also checking his vitamin D level.  He has had low vitamin D the last 2 times he had labs done so we started him on vitamin D3 drops to try and help it go up.  The Dr. told us that sometimes if you have seizures it affects the way your body absorbs vitamin D but we will see. 
   Elijah did a really good job this time!  It can be very difficult to draw his blood because of his cerebral palsy and he tightens up even more when he is scared.  2 ladies actually worked together this time.  He sat in my lap while one held his arm straight and the other drew the blood.  His blood usually stops coming out before they can fill all of the tubes so they normally have to try both arms.  This time it almost stopped but the phlebotomist somehow managed to get it all from just one arm so we were both much happier after the visit.  The phlebotomist said that maybe the blood stops coming out because he hold his breath when they take his blood.  But it went really well!  We took Elijah to the park after because he was such a good boy! 

Neurology appointment

Elijah had a neurology appointment today.  The Dr.  told us that Elijah seemed more active today then he had ever seen him.  We told him that Elijah wakes up around 1-3 a.m. every morning and he told us that we could try giving him melatonin before we lay him down for bed.  He did tell us that a few parents have said that their children have had seizures the nights that they give them melatonin so that worries me a little.  We also discussed Elijah's recent seizures.  Elijah will go to get bloodwork done tomorrow to check his trileptal levels to see if the medicine needs to be increased.  They may increase it and if he continues to have break through seizures they will add a different medicine.  He also decided that it would be best to prescribe him diastat to keep at home.  That way if he has anymore seizures that last more then 5 minutes we can go ahead and give him that and it should stop the seizure in about a minute or 2.  (It is basically valium given rectally) It would probably save us a hospital trip.  I was hoping that he would order an EEG but he said he doesn't need one right now.

Evaluation for PT

  Today Elijah had his evaluation for a new physical therapist.  We decided to switch after the surgery to give him a fresh start!  It is a lot closer to our house too.  The rehab was really nice.  They had really neat equipment.  Some I have never seen before.  This one in the picture was really cool.  You can make it different levels and positions depending on what you are doing.  The therapist tried to get Elijah to crawl across from one end to the other but he got too scared because it was up so high.  Maybe next time!  He really enjoyed looking in the different gyms though and he responded really well to the therapist.  You could tell she has worked with a lot of children she really knew how to make him comfortable.
    They also make orthodics in the office!  Next week the therapist is going to show me some of the AFO styles they do and maybe when Elijah needs new ones we can try them out. They will also be able to make his arm cast he uses for restraint therapy as he grows out of his old ones.
   Elijah's first goal is to get back to the point he was before the surgery.  To crawl, stand, and cruise.  Hopefully it won't take too long.  I can tell he is still sore because he keeps his legs balled up close to his body to protect himself.  But we are very excited!  Next week he has his evaluation for occupational therapy!

AFOs

 Today we went to orthodics and they delivered Elijah's AFOs!  This is his first pair.  He was wearing the SMOs but the physical therapist wanted him to have more support so maybe he won't crouch down as much.  Elijah picked the construction pattern!  So cute!  Of course I picked the wrong socks.  The Dr.  said that he prefers the kind that come under the knee and that don't have a heel.  Sometimes the heel can come up too high and bunch up in the brace.  The braces were quite a bit bigger then his old ones so we got to go shoe shopping!!!  We always go to Stride Rite because they have extra wide shoes that Velcro.  He ended up getting 2x wide!  We got them just in time for baseball season (which starts this weekend).  And they will even match his uniform!   

While we were there they also took measurements for Elijah's hip brace that he will be wearing at night.  He was too sore still to take a mold so hopefully the measurements will be enough to make a good brace.  We should get it early next week.  That one will have space aliens!

Bye bye spica cast!!!!

Elijah finally got his casts off!  The Dr.  kept telling me how much Elijah was not going to like it and how it would probably scare him.  Nope, Elijah was smiling and laughing the entire time!  The Dr.  also told us that he will be very sore after removing the cast.  So we gave Elijah a dose of Tylenol before the appointment and it really helped.  He even let the Dr.  move his legs around and do the exam that you normally have to go back to get!  He was very lucky he did not have many sores under the casts.  Only on his heels.  He does have very dry and scaly skin so we have to put a lot of lotion on him.   I was so surprised to see how spread apart his legs can be now when he is sitting!  Normally they are knees inward and overlapped.  Now it is the opposite.  He looks like a little frog!  He got to soak in the tub for the first time in 5 weeks and he really enjoyed that!  I haven't seen him so happy in so long.  He was also very thrilled to be back in his high chair and be able to feed himself his own food again.  When we got home from the Dr.  office he ate 2 hot dogs and a lunchable!!!  He is a little sore.  Mainly during the night.  He is trying to get into the crawling position but is not ready to stand yet. He kept his casts as souvenir and we will go to orthodics to have a brace made for him to wear during the night.  I really can't wait to see what kind of improvements this surgery will make!

Baby sister Madeleine

So when we first brought Madeleine home Elijah behaved like any child would.  He was jealous and cranky. He really didn't want to have much to do with her.  Every evening I would let Elijah hold Madeleine for cuddle time.  (In the evenings he has less energy so I know this is the best time for him to hold her, he is less likely to get overstimulated and accidentally hurt her.)  Sometimes he is happy to hold her and sometimes he will just look the other way.  Now that Madeleine is 3 months old she is able to sit in a bumbo seat.  So during the day I will sit her in her bumbo and put a tray on it. I sit Elijah next to her (I make sure his good hand is closest to her) and I put her toys on her tray.  Elijah is really interested in Madeleine's toys so he will dig through them and take them one by one off of her tray.  Madeleine just watches him with her eyes so wide as he shakes the toys in front of her!  It keeps them both busy and happy!  It is their own little game.  Now every time I bring Madeleine to Elijah he smiles and claps his hands, squealing with excitement!  I can't wait to see them grow and play together.  I just know they will be best buddies!

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!