zaavan co. and beepBo

i'm a dragon

2008-10-28T14:49:00.003-05:00

sorry for the delays in posting. i set this up for eirn to have a cathartic place to post pictures and talk about being a special needs mom. it has never quite gelled into tat. but, i DID have some super cool pictures of zaavan in his halloween costume this year that i wanted to share so here they are. tessa bought him a dragon costume. i LOVE dragons and i thought it was super cool to put him in it, cut off the tail, and then velcro it onto the back of the chair!

the evolution of brother and sister

2008-04-17T00:27:00.047-05:00

a bone. thrown.

2007-12-12T00:29:00.000-06:00

(i'm no good for the story side. erin would be the one to lay out in nuanced detail the amazing journey the kids are on. these are simply a few meaty photos i'm tossing out to help keep the wolves at bay.)

Wiggly tooth!

2007-08-11T20:23:00.000-05:00

i have a wiggly tooth! my bottom front right tooth is loose so my mom and my PCA's have to keep checking it so i won't swallow it and choke. when it gets loose enough my mom or dad are gonna have to pull it out! i can't wait for a visit from the tooth fairy!

she ain't heavy, she's my sister

2007-08-11T20:03:00.000-05:00

this summer i got a new baby sister! her name is Rowyn Alyse and she is kinda cute. mom and dad let us lie on the floor and play together, but sometimes she gets in my way of the t.v. i don't know what to think of her just yet, she doesn't bug me too much. she just moved into my room last week so now i have to get used listening to her cry at night. the best thing so far about having a baby sister is that now my mom doesn't bug me as much as she used to! my mom and dad seem to like her so i guess i better get used to her!

without further adieu

2007-03-07T17:06:00.000-06:00

what a long strange trip it's been. so much goes on and there's no way to catch you up on all of it right away.

zaavan continues seizure free and we are now in the process of tapering him off his last anti-seizure medication. as a result, he continues to be more alert and interactive with the world around him.

he is still learning how to communicate with us by using 'eye-gaze' and turning his head from one side to the other to indicate 'yes' or 'no'. he is continuing to be more 'vocal' all the time, although he still does not use words. he is still using a head switch with a 'dynavox' to speak for him and make choices, and continues to make progress in this vein.

we do have a major fight on our hands right now with the state goverment over a program that they hyped up to us to help provide funds for zaavan and theraputic equipment and accessibility equipment. but, since we have been approved, it has been nothing but a huge misleading headache. basically, the message is, "funds are available for use! but whatever you want to use them for will not be approved!" in fact, it is as a result of this program and the workers associated with it that we have doubled our debt in the past year. the message was, "get a van, we'll put a lift in it." over and over they gave us that message. we got a van. they then told us they wouldn't put a lift in it. but far too late for us to return it within the 48 hour window we had. and in order to get it we had to consolidate the van into an already existing loan and now the 'negative equity' in the van is so great, we can't sell it back. just one example of the types of headaches we are having with the program right now. the story is much deeper, but i don't have enough knowledge to wax eloquent. we'll have to wait for erin to do that.

and last, but not least, here are some pictures.

prayer, please.

2006-08-13T01:42:00.000-05:00

i have contracted a nasty fungal rash in all of this heat and humidity. i am on cream and antibiotics, but i would like some more of the REAL powerful stuff if i could get it from all of you dear brothers and sisters, please.

thanks. z

2006-06-09T13:00:00.000-05:00

i'm a walkin' fool!

2006-06-06T14:46:00.000-05:00

every thursday zaavan goes to the courage center in stillwater for physical and occupational therapy. this is him with his PT jessica. last week we put zaavan in a contraption called a gait-trainer. it is intended to help him "walk" by giving him support in the areas he can't control himself. the idea is to get zaavan to lift his legs and push himself forward. zaavan has been using a gait-trainer off and on at school and home for over a year with......less than successful results. ok, i'll be honest, he seems to hate it and has never even tried to push himself forward or backwards! until last week. i don't know for sure how, why, or what happened, but he was actually making attempts to push himself. it was all i could do to keep from breaking out into tears and looking like a blathering idiot in front of complete strangers. i could barely hold it together enough to snap a few photos. anyway....he tired of the gait-trainer fairly quickly (after about 15 min.) and there was no recovering once he started whining. but for a few brief minutes he actually tried to do it! he was trying to walk! and he was excited about it! i started clapping for him saying "yay zaavan! you can do it! go go go! you're walking!" and he looked at me with a big smile on his face that was full of pride, as if to say "i knew i could do it!" it was only a few small steps, pushes really, but each one was a giant leap for zaavan. my cup overflows with joy and anticipation of what his future holds.

This little pill

2006-06-06T14:03:00.000-05:00

this little pill is called Dilantin (dye-LAN-tin). it is an anti-convulsant that zaavan has been taking in one form or another, pretty much since he was born(except for a short period of time before he got his g-tube when we were experimenting with a different med.) this little pill is one of four anti-seizure meds that zaavan takes daily. since the induction of the ketogenic diet, he has taken this little pill 3 times a day. this little pill is a BIG PAIN!! in order to administer it, we have to carefully break it open with a pill cutter, which is very difficult because it is secured with a pink band intended to keep people from opening it, and gently tap the contents into a medicine cup being cautious not to spill any. we then, with a syringe, measure out the exact amount of water needed to disolve the precious powder after it is released from it's gelatin capsule. sounds like a piece of cake so far right? well now we must stir the contents gently until completely dissolved and draw it into the syringe to administer it through zaavan's g-tube. sounds easy? IT IS NOT! for some reason the contents of this little pill are almost impossible to dissolve, do not incorporate well with water, and stick to absolutely every surface making it extremely difficult to get an accurate dose. not to mention, taking a painfully long time. jon, myself, and zaavan's PCA's have spent upwards of 10 minutes, 3 times a day, just trying to accurately and correctly administer this one little pill!
6 weeks ago we started to gradually taper down the dilantin. zaavan has been nearly 3 months completely seizure free! his neurologist gave the OK to get rid of dialntin, as tolerated. if successful, we can move on to getting him off of one of his other anti-convulsants.
i'm very happy to say that we have succesfully weaned zaavan off of this little pill with no breakthrough seizure activity, and as of now, he has gone over a week without it! still no seizures! this little pill is going bye-bye. hopefully forever. and we are not going to miss it one little bit.

speech therapy

2006-05-05T12:44:00.000-05:00

this is zaavan at speech therapy working with the dynavox and playing with the bubbles! his therapist likes to make him "kiss" the bubbles to work on pursing his lips together, in order to improve mouth and jaw function. the little green alligator is a device that vibrates and is used for muscle stimualtion to improve oral motor skills. zaavan isn't thrilled, but at least he tolerates it, which is a far cry from where he was two months ago. he has always had a pretty significant aversion to anything even coming near his face, let alone in his mouth! i'm sooooo proud of my little guy!!

it's about time!!

2006-05-05T11:25:00.000-05:00

ok, i know this has been a long overdue update! sorry for keeping you all on the edge of your seats waiting for a progress report. thanks for your patience, and for harassing me into action!
zaavan continues to amaze us all...it seems that almost daily he is doing something new or different. his teacher called me at home last week just to gush over his progress! every week at PT/OT, his therapists are noticing an improvement in his alertness and abilities. zaavan is quickly mastering a communication device called a "dynavox" which is a portable electronic screen that displays images for him to choose (or not) what he wants. with the help of a push button switch that he uses by moving his head left (no) or right (yes), he is making clear and consistent choices.
so far bubbles seem to be his fave as he chooses them almost immediately every time, and then after he pushes the switch, the image on the screen gets bigger and says "i want more bubbles", and he promptly looks right at the bubbles and smiles BIG as if to say "make with the bubbles!"
i am elated to say that zaavan continues to be seizure free!!! it has been over a month since we have seen anything resembling his typical seizure activity, and because his little brain is relieved, he is literally "waking up". before the ketogenic diet, i was often unsure if zaavan even knew where he was, what he was doing, or who was with him at any given moment. i was convinced that he probably didn't even register who i was. now however, he seems to know his routine, he anticipates what is coming next, he pays close attention to whoever is with him by following them with his eye gaze, and his focus and eye contact continue to improve!
wowser! i feel like i better quit while i'm ahead. 'nuff said for now. keep on prayin' and giving glory and honor to the Father, without whom none of this would be possible.

you got somethin' to say.....why don't you say it to my face?

2006-04-13T16:34:00.000-05:00

good news for all of you who have been wanting to leave a comment but have not been able to because of the silly block on anonymous people: i have removed the block, (which i never really wanted) so feel free to comment yourself senseless! come on. don't be shy. i really want to know what you have to say. yes. do it. do it now. i'm waiting....

Apple of my eye

2006-04-05T23:52:00.000-05:00

this is him. this is my baby boy. well...he's not a baby any more, but he'll always be my sweet baby boy. i'll be real open here and say that jon and i have recently come to the discussion of having more children. i mean really talking about it. poring over the finer details. remembering the sacrifices. reveling in victory yet, in a way, declining to engage in battle a second time. part of me is more than justified in this decision taking into consideraton my (our) circumstances, and yet there is a part that wonders if we are giving up too soon. i don't know what i mean by giving up....ok....i guess i do know. would i be giving up on jon and i getting the chance to be "typical" parents?
i can't explain quite the conundrum that we are in. maybe opening the topic up for discussion will bring a point of view not yet discussed, or at least you can tell us we're stupid and shouldn't worry so much because we already have a beautiful, delicious little boy that is more than worth whatever pitiful sacrifices we feel sorry for ourselves for making.

humble beginnings.

2006-03-30T12:52:00.000-06:00

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

2006-03-26T23:55:00.000-06:00

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

2006-03-20T18:21:00.000-06:00

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

2006-03-14T20:57:00.000-06:00

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...

2006-03-11T13:01:00.000-06:00

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....

2006-03-08T01:17:00.000-06:00

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

2006-03-02T15:45:00.000-06:00

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.