He's on a roll

Ilan played backgammon three times this week.  He is able to comfortably lift both dice, throw them and then move each of the pieces by himself to the right (count) spot, all with his left hand. Tonight he completed a whole game, and won!!

Ilan is now using his hand to direct traffic by telling/reminding us what to do.  For example, when he is being changed and we have not yet finished pulling his shirt over his head/arms, he already points to his feet to remind us to (get our act together and hurry up) to put on his shoes! 

Last evening he had another first.  He has refused to be fed by mouth with the delicious purees

(apple, peach, etc.) that his bubbe and mum make for him.  Well last night we gave him chocolate pudding and he ate 4-5 times more than he has ever eaten thus far.  We are not sure if it was the taste or the texture that spurred him to eat so much.

This afternoon mum took him after therapy and they had lunch together with dad in the park as it was a beautiful day.  In the evening, Ilan and dad went to a Sinai family's house as a visitor/healer from Israel, that has prayed daily for Ilan's recovery since the accident, was in town and wanted to meet Ilan.  He feels that Ilan will recover almost completely but it will take some time?!  

Late this evening Ilan showered his affection to his sister (when she wished him goodnight) by hugging her tightly and also caressing/stroking her head and hair!!

 

Additional Progress

Ilan has had quite an exciting week.  He did his regular physical and occupational therapy classes during the week where he sometimes chose not to participate - he came home and showed us where it was bothering him (his cheekbone) and that is why he would not participate! However, he did very well when he did participate.  So much so that the therapist is looking to add a piece of equipment to their inventory that will assist Ilan in learning to walk again.

Ilan excelled with multiple flash cards in Math, English, and general logic type items scoring 100% in most everything.  He seems to be unsure of himself in spelling. Also, he has agreed to play backgammon and chess when time permits?! 

One of the Milken parents, Susan Kaye, who has so kindly come regularly to help Ilan with therapy since his accident, came on Saturday morning and she mentioned that she found Ilan helping her quite a bit with his "lazy" right arm.   

On Saturday late evening we took Ilan to drive his sister to a Bat Mitzvah in Westlake; we decided to stay in the vicinity till we picked her up.  We asked him if he would join us for dinner at BJ's restaurant and we were overjoyed when he responded yes.  After we were seated, he had a very interested and excited look on his face - he looked around a lot, "conversed" with us a lot, and checked out the TV screens.  This lasted for about 20 mins and then he got a bit restless. As soon as we left the restaurant he perked up again.

On Sunday Jarone was home and exercised him a lot.  We stood him up and tried shifting his legs alternately to duplicate walking.  It did not go very well as Ilan favored only his left leg since his right leg is still quite stiff and immobile.  The good news is that while Ilan was standing we asked him to give us the victory sign and he did.  We got a great picture of this and will try to post same in the near future.

This afternoon (Monday 2/23) Estelle said that she worked with Ilan in the transfer of tennis balls from one basket to another.    She asked him to use his "lazy" right hand to do this exercise and was happily surprised to see that he did this exercise four times with his right hand for the 1st time since the accident!!!   

Good results

Last Monday, we took Ilan to Casa Colina Hospital in Pomona for his evaluation.  Ilan was quite shy of the doctor at first but came on strong in the latter part of the checkup (after he was prompted by phone by his older brother David!).  The result of the evaluation was that they were quite pleased with Ilan's progress and felt that he is a good candidate for a stay at their hospital to help and teach him with his recovery; they suggested various additional meds that could also help him with specific needs.  The holdup at this point is getting approval from our health insurance, HealthNet.

Later in the week Ilan went to the school district for a speech evaluation.  This entailed asking him many different questions using flash cards; he managed to correctly point to 9 out of 1o!

Ilan continues to have a smile on his face thruout the day like a newborn child discovering his surroundings.  He accomplishes all his tasks with twinkly excited eyes, even when he does not like what he is doing or is in discomfort.  He amazes us with his tenacity to try new things.  He utilizes his left arm and leg to maximum benefit.   Jarone has him doing 'circles' by holding his hand out wide and moving his hand in circles (similar to what is done in aerobics).  Ilan manages to do so by himself with his left hand and Jarone helps him with his right arm.  

His right arm and leg are currently immobile and relatively stiff, similar to how his right arm and leg were prior to him achieving controlled movement.  We asked the doctor about this and he confirmed that the stiffness could be a prelude to his developing control of his right side?!

The other day he looked quite tired and looked at me like he was trying to communicate with me - I asked him many different items he wished to to tell me.  Turned out that he wanted the TV turned off and for me to leave the room.  Well I told him he needs to use his hand to tell me this. So he pointed to me and then pointed to the door, for me to leave!!!!   

Ilan has also been trying to speak.  He realizes that this is not yet going very well but upon a little coaxing agrees to try.  We try to break down the words into only  2 syllables.  For instance, we say 'la' and he responds the best he can and then 'ni' and he responds.  We do this several times and sometimes he will combine both syllables with a tone inflexion, and then smiles extremely proud of his accomplishment.  When he does combine the 2 syllables we ask him if he said 'lani', he nods emphatically and gives us a shy yet proud smile.  

This weekend we took him to the Westside Pavilion for a brief visit, against his complaints.  Once there he was cheerfully looking around at the stores and the people.  We took him to the puppy store on the 3rd floor and he was totally absorbed in watching the puppies playfully rolling around with each other.  When we returned home and asked him about the trip, his observations were that he was disappointed he did not meet any of his friends and also he did not see any pretty girls there!!!

Ilan is making strides

Since the last posting Ilan has made many strides forward in his desire to improve.  He is moving his left leg and hand on request; with his left hand he shakes hands, he grips a ball and places the ball from one spot to another,  he stacks cups (in color order repeatedly), he reaches and points to his shirt selection for the day.  On request by his brother he now lifts his head high off the pillow.  His right hand and leg are making slight improvement so far.  Also, Michal taught him to shake and nod his head for no and yes and he will very often give us 'no' in answer to everything and then laugh. 

This has led Ilan to a lot of mischief.  He throws the covers off him in the middle of the night even though it is cold and then loudly calls out "Ma" for Estelle to replace it;  while he is in the van he lifts off the safety hat restraint  from his head even though he is requested not to do so; he refused to swallow during a recent crucial swallow test and laughed when the doctor gave up and said to reschedule; and last weekend he pulled out his feeding tube in the middle of the night which later caused him a lot of pain and discomfort when the doctors took a while replacing same the next day.  This led us to make Ilan start to eat "foods" and have started him on a daily routine of a small amount of pureed fruits - he puts up a fuss but gives in and eats his alotted share!

Last week, Ms. Greene and Mr. Pennay from Sinai Akiba visited with Ilan one evening after school.  They are Ilan's favorite teachers.  Even though Ilan later said that he enjoyed their visit, apparently he was very quiet during their visit not making much eye contact.     

Just a few days ago Ilan went to see his  neurologist who he had not seen in 2 months.  She was amazed and excited at the improvement in all arenas that Ilan showed her.  Ilan confidently shook her hand and nodded to many of the questions she asked him.  She was very glad to learn that Ilan will be going next week for a rehab evaluation and, like all of us in the family, she is anxious to learn the results which could put Ilan on a faster track to better recovery.  She also suggested that, due to his recent progress, she would check into a new program for Ilan of magnetic brain stimulation at USC Medical Center.

Please do us a favor and inform us if you know of, or can suggest, any new exercises or routines that will help Ilan in his recovery. 

Sinai Friends Come for a Visit

When we told Ilan that some more of his friends were coming to visit last weekend he became very excited.  He helped select the chips and sodas that he wanted served to his friends and had a smile on his face all afternoon before they arrived.  He was a little shy when they did come but he managed a few smiles and furtive glances at them.  The girls that visited were all classmates from Sinai Akiba and also from Milken.  He really enjoyed their company, their smiling faces and discussions with him.  He actually played a joke on them because when they asked him if he remembered them he responded with a "no" using his eyes.  Yet after that when we gave him the wrong names for each of the girls and asked him if that was their name, he shrugged his shoulders and laughed!  When they left Ilan grew quite sad - we asked him why he was sad and we were able to find out later it was because he was not able to speak with them! 

Ilan is looking his best in a long time and has an interested look on his face at all times - he is also becoming very keen on improving his ability to move and communicate.  Just this weekend he learned how to shake his head to respond "no" and nod his head for "yes".   He hasn't lost his humor - he has played a few pranks on us by giving the wrong answers on purpose and chuckling loudly when we look at him with a perplexed look.   Also, now that he has better control of his left arm he is able to shake hands well and give and receive a ball; these are huge steps for Ilan!! 

Ilan goes for an evaluation in February to determine if he is able to proceed to the next stage of his rehab - we believe that he is now ready and hope that the doctors feel the same way.  

Dad-Brian

Hannukah Party

Last Saturday, a bunch of Ilan's friends came over to spend time with him. The highlight of the day was a video they put together just for Ilan, which had friends and teachers from Milken wishing him a happy Hannukah. Ilan really enjoyed watching the video, but I think his favorite part was seeing familiar faces and being a part of the excitement. I'm attaching a few pictures of the fun day.


I figured now might be a good time to update on Ilan's progress, as it has been pretty amazing. Ilan's control of the left side of his body is getting better every day. He can move his arm pretty much on his own (into shirt holes and to arm wrestle with one of us), and he can bend and move his leg with ease. As some of you may remember, we used to communicate with him with blinks. Now, he has incredible control of his head in moving it from side to side so we try to use that instead. For example, instead of asking Ilan to blink twice if he wants to watch the Laker game, we now ask him to look at Michal. It makes it easier for us to understand what Ilan is saying, and also gives him good practice working out his neck muscles.

Ilan has some pretty amazing therapists working with him (some of whom might even be reading this). The big exercises for Ilan in physical therapy right now are sitting holding himself up on his own with his arms, and rolling his upper body over. He is also working on holding his head up on his own and doing more things with the right side of his body.

Thanks for reading and Shabbat Shalom!

- David

Trip to Milken

Sorry nothing has been posted for a while, but we'll hopefully be writing more especially over the next few days. Ilan has been pretty busy lately, hustling around for appointments around town. More importantly, he looks great. Ilan is smiling and laughing, and goofing off at every opportunity. He is moving his head on his own and loves being the center of attention.

Ilan and I have been arm wrestling on a fairly regular basis, and the strength in his left arm surprises me every time we battle. Lately he's been a little shy in doing it, but he might also be bored with beating me every time.

On New Year's Eve, the whole family went up to Milken so Ilan could hang out at his old high school. He really enjoyed being up there, especially when we stopped by a few of his hang out spots. I'm attaching some pictures, of us in the amphitheater and Ilan making note of his trip on a whiteboard. More to come in the next day or two, so keep an eye out.

- David