humble beginnings.

this is zaavan's tray for his wheelchair. as you can see, it has two pictures taped on it. on the left is "no." on the right is "yes." this is the beginnings of teaching him cause and effect and choice making and the little things that we take for granted that go into communication with one another. when a choice is presented to him, he is supposed to use "eye gaze", meaning that he is to look at the choice he is making and then make eye contact with the person who is giving the choice. and it is from this setup that i offer you a story.

last thursday night, i walked into zaavan's room around 2am to check on him while he was sleeping. i found him quite awake. he greeted me with a smile as per usual. then i relfexively asked him what was to me a rhetorical question. (rhetorical in the sense that i was not expecting a response) i asked, "do you have a wet diaper that you need changed?" as soon as i asked this, he flicked his head to the right and looked me in the eye. it took me a second. then i realized he was answering my question. he had turned his head to the side of "yes" and looked at me. to reinforce this choice making process, we give him his choice immediately so that he can learn cause and effect. so, trusting his answer and asking no more, i checked. the diaper was loaded with wetness.

i took it off and before i put on the new diaper, i was going to give him a wipe with a wet one to freshen him up a little. but then i stopped. would i want a cold wet cloth on my privates when i had been all warm and snug under the covers not but a minute ago? so i asked, "zaavan, do you want me to wipe you off?" he turned his head to the right (i was standing on his right) but he screwed his face up, furrowed his brow and grunted. i took this as a "no", but i wanted to reinforce the system we have been going with. so i asked, "zaavan, do you want me to wipe you off? yes or no." this time he flicked his head to the left. so i did not.

"do you want me to stay for a little bit?" he flicked his head to the right. so, instead of leaving right away, i rubbed his chest softly and hummed for a bit. he fell back asleep within minutes. and it was then that i determined i would take his speech therapy upon myself. to go with him to the sessions and help communicate the progress to everyone else. and i thought this would make a special "father and son" time that we don't really have as pertains his therapies. AND i do know that communication is not only a passion of mine, but a gift. and i thought i would start putting this gift to good use for my son.

pray for growth in this area. i am quite sure one of the most frustating things for him must be being trapped inside of a body that he cannot control and needing to communicate and interact with the world around him, but being unsure of how to do this and many times unable to do this most effectively. pray that he would be able to do this more and more, and that we would be given ears to hear him when he does "speak".

pictures

thought i would share a couple of pictures taken today. the first one is exceptionally important. i know how important it is to zaavan to feel like a big boy. i was able to leave him in daddy's chair with no harnesses and no repositioning for over a half hour today. and he sat just like that. not only did he not fall over, but he also was able to sit forward and hold his head up all on his own. this is a huge step for him!!! way to go buddy!!!

something old...something new

zaavan has contracted a bad cold or something of the like. it has come with coughing, congestion and an outrageous fever. in the past when he had a fever, his seizures would go out of control. this time it has been a different story. even at its highest, 104, he still has not had any seizure activity. praise god!

little by little he's changing me

i took zaavan to speech therapy alone for the first time today. after last week's underwhelming performance, today's was nothing short of spectacular.
after a few tries with different switches, we decided to try a "head switch". which was a little switch button that i held close to the side of his head for him to push using his head. it was connected to another recording device that used two phrases for our purposes today. one phrase was, "i want more bubbles". the other was, "turn the page."

to begin helping zaavan to communicate with the world around him, we are beginning by teaching him cause and effect. the trouble has been finding a "cause" that he can actually cause by himself. the head switch seems to be the answer as his neck is one of the few muscles he has fairly good conscious control of.

though some hits were questionable as to their intentionality, as things went on, it was clear that he was getting a good grasp of this and enacting it over and over again. even to the point of asking the therapist to begin turning the pages of the book at "t.v." speed. pray that this will continue. jON

feelin' the flow....workin' it...

this week zaavan had his first suplemental therapies at the courage center! it has literally taken me months to orchestrate these appointments because of all the procedural hoopla i had to deal with, so now that it's finally happening i'm very excited to see how zaavan will respond. he will have speech, physical and occupational therapy each once a week above and beyond what he already gets at his school. tuesday was his first speech session and honestly it did not impress me. zaavan wasn't really into the new speech pathologist,(he'll just have to get to know her)so he was distracted. he didn't want to make choices for activities and wasn't activating his switch purposefully. on top of that i had to feed him during his session in order to keep to his strict schedule and that was a huge inconvenience! i'm going to have to think of a better way. we all have our off days so i'm hopeful that next weeks session goes better.
on thursday he had his first PT/OT sessions back to back and i'm delighted to say that it was a raging success! zaavan had the best PT ever! he was so on it was amazing. he was completely focused, making eye contact, making choices clearly and consistently, reaching for and grasping objects with real purpose. his therapist brought out a toy called a "bumble ball" which is a ball that vibrates and bounces around independently when turned on. zaavan loved it! the vibration was actually making him smile when typically he isn't interested at all. he was attempting to turn the ball on and off by himself, and when he got it on he was grasping it so tightly that is was vibrating his whole body! his little arms were shaking and he was just smiling big and having fun. a particularly amazing thing that he did was try to taste the ball while it was on. he was opening his mouth and bringing the ball up to his face! he got it on his lips and held it there for a few seconds. tears came to my eyes, because that is HUGE! a little background: zaavan has an extreme oral aversion. he doesn't like anything (with the exception of his own thumb or fist) even coming near his mouth, or face for that matter. he only just recently started letting me brush his teeth by opening slightly. so watching him show interest in a toy enough to try to taste it was awesome! typically abled children explore and learn about the world around them by putting everything into their mouths. not so with zaavan. another really cool thing was his choice making. he actually shook his head "no" when he didn't want to stand and play! we asked him 3 different times to be sure he was understanding us and also to make sure our eyes weren't decieving us. each time we asked, "zaavan do you want to stand up and play?", and with only a slight delay, he shook his head "no" violently! we then asked him if he wanted to play with the bumble ball more (something we knew he wanted) and asked him "do you want to play with the ball more, yes or no?" he promptly looked at the ball and looked at his PT signaling a definite yes! i gotta tell ya, as a mother i was so proud i was beaming! something that might seem small and insignificant is seen as a mountain of an accomplishment to me. maybe i'm lucky to take complete joy in even the tiniest amount of progress. parents of "normal" kids take joy in the first word, first step, first time they tie their shoes. i'm taking joy in something as basic as my son making eye contact with me. how many parents get to be excited by saying "my kid put a toy in his mouth today, yeah!". i guess big miracles come in small packages. if you are a parent, don't forget to praise your children for their accomplishments, big or small. and don't forget to praise the giver of the best gift you'll ever get. peace.

i don't even kow what to say....

ok... zaavan has been on the ketogenic diet for exactly a month now and so far so good! we have had to completely rearrange our schedule, his feedings have become a science experiment, hell, our lives have become one big science experiment. after one month, he has had 7 days seizure free which is a lifelong record for him! it might not sound like that big of a deal, but if you consider that zaavan has been having seizures since approx. 12 hrs. after birth and multiple episodes per minute since then at the worst, then those words ring music to your ears. even on 4 anti-convulsants he was only having partial seizure coverage. on his best day we would observe 4-5 seizures. going 7 days without his typical episodes has been an answer to prayer. but not only that, it has been a complete surprise.sometimes we don't ask the lord for what we really want because we don't think we'll ever see eye to eye, at least when i pray, i take it as sacred time of communication with the lord, that awakens me from the normal push and pull of day to day existence, and somehow that enables me to step outside myself and appreciate what is going on around me and in me and everywhere. but when i praise the lord and am reminded of all the prayers that are sent up for zaavan, it breaks my heart. not in that bad, unrequited way, but the way that humbles and opens eyes and hearts and is completely fulfilling like the holy spirit is. i can't really explain it better than that. sorry. i am jumping out of my skin because god is good! can you even understand? i love my son. i love that he isn't having seizures right now, and i love our god no matter what happens....stay tuned.

mission

this is a space to keep everyone updated on all things zaavan. pictures, triumphs, failings, joys, and sufferings. the chronicles of zaavan, a child of light to pierce the darkness.