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!