| November, 2007 |
 |
 |
 |
|
Nov 3, 2007 Hi all - I've had a bad cold and have been going to bed early rather than entering in the blog. Please bear with me. Please pray Cody doesn't get this cold -- a cold for him usually means a trip to the E.R. and 2 weeks of horrible seizures. Thanks! Shawna Nov 5,2007 (p.s.) I'm adding to lots of the sections on this site. There are more items on the left hand menu...including a "father's perspective" which will feature reflections from Don on this journey. He will post the first one soon! Hi there - still sniffling and sneezing but wanted to get back in the swing of things. We have been laying low most of the week - we had 42 trick or treaters!!! wow! Here's a photo of Casey in his pumpkin hat. The last 2 Halloweens I've dressed Cody up and gone out but I just didn't have the mojo this year. He usually hates it and the whole hassle only gets us a cute photo and that's it. So this year I went easy on myself and we just stayed at home and handed out candy. I have to say it was nice not to feel obligated to "give Cody all the experiences normal kids get." The simple fact is, he's not "normal" and trick or treating -- and getting into a costume -- do nothing but frustrate him. So for this holiday, we opted out. But I did get the super cute photo of casey as a pumpkin at least! :)
My mom was here the last 5 days to help with Cody as his behaviors have been simply out of control. I believe it's from raising the Lamictal dose so our neuro advised to stay at this dose for awhile and move up the dose time to afternoon to help with night time sleep. But despite his negative behaviors flaring, he's been doing great cognitively! He's still working with PECS but he's graduated to a picture board! We're teaching him to walk to the board and choose a photo of what he wants to request. He's still a bit fuzzy on the idea that each picture "means" something different. Instead, he's thinking he should hand us any picture and we should read his mind. Today at autism class he was a snack time and there was a photo of a small ball....and a photo of a granola bar (his favorite.) He kept choosing the photo of the ball but when it was handed to him, he'd hand it back. haha. He wanted the bar but he just hasn't made the connection yet. The speech therapist says it will probably happen within a couple of weeks. Should be exciting! Mom and I went to Craft Day at our church. I actually put make up on and fixed my hair! It felt so good to get out and feel normal for a bit. We made a bookmark, a teacup bird feeder, a bracelet, and more. Quite fun. I'm still trying my hardest to nurse Casey - I've made it 4 months on breast milk alone! Yay! It's still a struggle. (for those of you who don't care or who are male...skip this part). I got lots of great advice last time I posted about this - here's the latest - feel free to email with any input: I pump 4-5 times a day to keep my supply up since he "snacks" all day long and only take about 1/2 the milk out each feeding. He'll only feed lying down - in fact the last 2 days at kindering center i've had to find a private room where i can lay on the floor with him! He needs 1 bottle before bed cuz my supply just dips too low right around dinner time (which is common.) I'm on domperidone - a gastro drug that's side effect is lactation -- plus i take "more mothers' milk" 3 times a day which has fenugreek & other herbs for lactation support. casey sleeps from about 7:30p - 3 or 4am --- then wakes up to be fed. and his naps he constantly wakes up wanting to eat. so his "1/2 meals" affect his sleep I think. he's now (since i went to just 1 bottle a day) not gaining quite enough - only 2 oz. this whole week. so i'm going to need to add 1 more bottle i think. I have this vision of what i want - a simple, organic feeding session where he lays across my lap and sucks - looking up at me with wide beautiful eyes. instead, we're laying down on the bed and i have one arm compressing under me - practically a contortionist - and he falls asleep and i have to run back in 15 minutes and drop what i'm doing to feed him again. and he's never super full. do you think i'm hanging on to a fantasy i'll never reach? or do you think with time, this could become more fluid (no pun intended) and he'll get better and better? The lactation consultant said by the 4th month, things are pretty much written in stone. i know i could pump-only and provide him with breastmilk for at least a couple more months by bottle. but i'm just hanging on and hoping that the breastfeeding sessions improve. am i nuts???? One person wrote me that maybe this is a pride issue - but I assure you it's not. I want to breastfeed to give him the best health and immune system possible - especially since seizures and autism run in our family. I could pump and give him breastmilk by bottle - but that will shorten the life of my milk production most likely. Thanks - any input appreciated, Shawna Noc 6, 2007 Am I living someone else's life? Is this a dream? This has been the best morning in a YEAR! Casey woke up at 4am (typical) but went back to sleep at 6am. So I put him in his swing and crawled into bed with Cody expecting him to toss and turn and get up at 6:15 sharp (his wake time every single morning.) But no - I fell asleep next to him and he slept in till 8:30 AM!!!!! And so did Casey! They both woke up at the same time and we all hung out in the living room. Then had breakfast. All calm and no freaking out. Then at 10am, they BOTH FELL ASLEEP AT THE SAME TIME and here I sit SIPPING A CUP OF TEA! Who am I?????? This is INSANE! I know these are small pleasures - but in my world - when something good happens you CELEBRATE! So for this beautiful morning, and for this moment as I sip a steaming hot mug of tea....thank you Lord. Thank you for the silence. For this moment to myself. For no seizures yet today. For Cody sleeping IN! Mornings are so stressful around my house and my mom's been here for 5 days so I was dreading tackling the morning alone after all that help. I appreciate every single second of this. I take none of it for granted. It may end at any minute and we may return to our chaos, seizures, trials, insanity....but right now....I soak this up. and I'm grateful. Shawna Okay, the dream ended and both boys woke up at the same time - but still a decent day all in all! I'm still updating the new links on the home page - I will add to "cool stuff I like" as I find things that are appropriate throughout the year. Don's getting ready to write his "father's perspective" too. Thanks for checking in - have a great night! Shawna Nov 7,2007 Cody's had 3 huge seizures today - such a bummer. Prior to that he'd gone 3 days seizure free. I think he may have caught my cold but we just haven't seen the obvious symptoms yet? Usually a big seizure blitz means an illness. We'll see. Poor little guy. He had two of them back to back as I drove on the freeway - I had to pull over to make sure he was okay. We were on our way to Childrens to meet with our Neurodevelopmental Pediatrician (longest job title in the world, dontcha think?) Oh wait, I think we've seen someone with a longer title - Cody saw Dr. Weleber who was a "neurogenetic pediatric opthamologist" - I think that one takes the cake. We discussed the merits of Resperidol (sp?) A medicine used to quell out of control behaviors in autistic kids (mostly.) He recommended trying it purely for quality of life issues. We may...we need to pray about it and discuss some more. An internet mom says it made her daughters behaviors (and consequently their family's life) much better...calmer. It's even supposed to help with sleep! The LAST thing I want to do is shove one more drug down him. But if it helped his development and helped him feel better about living in his own skin, it would be worth it. We got back his evaluation for the school district - they bring you into a tiny little room where 3 examiners watch him and interact with him and ask you questions. Then there's a separate physcial therapy evaluation on another date. I dread these things because the feedback is always so depressing. However, I decided to look on the bright side this time. I just got the report back and there are quite a few funny lines in it amidst the "very very delayed" comments. Here are some of the quirky quotes that make me laugh (cuz ya gotta laugh or you'll cry!) My comments are in italics and follow their quotes. "When another child cries, Cody covers his ears. (no doubt a skill perfected with the help of his little brother!) Cody was a lot of fun to work with. (Duh!) Cody did not say any sounds beyond repeatedly blowing raspberries. (This cracks me up.) Cody climbs on top of furniture. (Those poor evaluators - he climbed on furniture, on them, on tables, on chairs...practically on the ceiling!) He also mouths most objects and he is able to put even medium sized things into his mouth that one would not expect might fit. (Maybe he could enter "America's Got Talent?") Cody did not vocalize, but he constantly blew raspberries (Yeah...we knew that already...) He licked the occupational therapist's face. (That's my boy!) On occasion, Cody will hit others, and attempted to hit the examiner today (again....That's my boy!) His walking is generally non-purposeful, in that he tends to zig-zag around the room, and literally bump into objects. Further, he does not appear to change his behavior when this happens, or be bothered by this. (Might have been the shot of tequila I gave him before we had the evaluation...just to loosen him up...) HAHAHAHAHA. Actual quotes. Ya gotta love it. Shawna Nov 10, 2007 Oh brother - yesterday I went to check my emails and phhhhhhhhtttttttttttttt. Nothing. Nada. Not even a red light on my computer. Completely dead. I HATE inconveniences like this! I am lost without my computer. After 24 hours of trying to make it work and calling every computer whiz I know - my husband spoke the grim reality that I knew I was facing. We need to buy a new computer. Oh the drama. Will we be able to extricate anything off our old hard drive? Who knows - we'll have to see this coming week. So off we went to Costco and spent the money --- UGH! Course then you realize you also need Microsoft Office...a wireless thingie...new anti-virus stuff. Not the way I envisioned spending my entire weekend! But my husband - the king of the sunny disposition - kept saying "I'll have you online by tonight!" and "This will be NO problem!" and "I know how much your computer means to you -- I'll make this work!" Can I tell you how much God knew what He was doing to give me Mr. Sunshine for a husband?!? I countered all his sunny-ness with "this is NEVER that easy" "there will be a million glitches" "I'll believe it when I see it!" It must be such a drag to be married to me! hahaha. I am the ying to his yang. Granted, sometimes he can be too "sunny" and needs a reality check. I like to think we compliment each other but in truth - I have a much better deal! I get his sweet, positivity and he gets my negative grumpiness. And guess what? I'm online by tonight! He was right. He spent ALL day putting this computer together - with no vested interest of his own. He rarely gets online at home. He just wanted me to be happy. I cooked him a nice dinner - thanked him profusely - and confessed that I am the Grinch. :) Course we've yet to do all the other "stuff" -- like seeing if the old hard drive can be salvaged. So my Grinchy-ness may come in handy yet! Just makes you realize how much I take my comforts for granted. Can I go on record to say - I don't take my computer for granted today? And I don't take my husband for granted either!!! I have been blessed with someone who truly cares. He genuinely demonstrates other-centeredness on a daily basis. A young guy rang our doorbell tonight and while I always just open the door and when confronted with a solicitor, say "this isn't a good time" while I smile very nicely and wish them a great day. But the truth is, it never IS a good time! I have a baby and a disabled child! But my husband, bless his heart, hears the doorbell and as I whisper "don't answer it!" (no one who knows us rings the door bell because they know either of the boys might be sleeping) - he bounds to the door to find a young man named Tyrone who was selling magazines. In typical Don fashion, he knew the kids life story by the time Tyrone went back down our driveway. I said, "did you buy any mazagines?" Don said, "no...but we talked about the Lord. He's a neat kid. Really articulate...really trying hard. And he has had a really tough life. He already has a child." That's my husband. He has the time of day for everyone. Later he went on an errand and saw Tyrone out knocking on other doors and he stopped the car and chatted some more. He's calling Tyrone tomorrow to order some magazines he doesn't need. And no doubt Tyrone will never forget the nice young father in the Sunrise Vue subdivision who took an interest in him. That's my husband. I still have a cold but it seems Cody may not have gotten it. He definitely had a spike in seizures this week but no more signs of a cold so I don't know what happened. Yesterday only 1 seizures and today none again! Weird. We've raised the lamictal today after holding off for 12 days at the prior dose. That means a peak in mania and behaviors till he gets used to this dose. But I'm thinking the lamictal is doing something because in between horrible seizure days he keeps racking up seizure free days. We have our 6 day video EEG set up at Children's in January and my fantasy is that he's seizure free by then so he doesn't have to go through it. The EEG is to determine whether he's a surgical candidate and as the neuros tell me, going seizure free on a drug is FAR preferable (for Cody) than brain surgery. Would you care to join me in a fleece before the Lord that Cody is seizure free by Jan. 14th? Thank you SO much to those who responded to my plea for breastfeeding advice! It's going so much better! I got a lot of the same comments...."follow your child's lead and let it be natural instead of trying to control it" which I've done and I think it's made a difference. Instead of freaking out and trying to feed him every 4 hours, I fed him when he showed me he needed to be fed. It wasn't as often as I thought he "should" eat but he still gained weight so he must know what he's doing! I think his suck is improving as he matures which also helps my milk supply. And he's starting to feed with me sitting up instead of lying down the whole time. So far, so good. Thank you for your advice, mothers! You know it best! Well I must go - time for bed. Love to all, Shawna Nov 11, 2007 Here's a newsflash to those whose children are treated at a Children's Hospital (esp. those in Seattle at Children's Hospital of Seattle.) I just found out through a fluke conversation with the billing department that they (and most hospitals) have what's called a "catastrophic clause" regarding billing! If your child has a catastrophic illness - or one that affects your finances catastrophically - Children's will write off all hospital bills after a set amount of money. For instance, based on our income and the number of children we have (family of 4)...once we hit the $9,000.00 out of pocket amount at Children's they will absorb all bills past that point per year. We spend SO much more than $9,000 a year there so for us, it's HUGE news! I asked the gal if many people know about this and she said "no - but we wish they did!" Apparently it's something they want people to take advantage of but they have trouble getting the word out (acc. to them.) Seems (to me) that it would be easy to just go thru the database and call people who are wracking up huge bills...but that's just my thought. :) So if you (or anyone you know) is a frequent flyer at the Children's Hospital -- you could tell them about this great help! We probably spend at least $20,000.00 a year on medical bills and that's not including equipment, supplements, housing modifications, helmets, leg braces, naturopaths, etc. So this, for us, is a huge blessing. That's it for now - 3 seizures today but otherwise a great day. Great church service and fun seeing all of our friends as usual. love, Shawna Nov 14, 2007 Hi there - What a morning! Cody woke up at 4:30am and that's when our day began! Because when Cody's up..........EVERYONE'S up! He makes enough noise with his raspberries, sputters, shrieks and squeals - you'd think a troup of kids was in our living room! Don and I sat in the living room staring at each other for the umpteenth time that we've gotten up at this hour. Then at 5 he got ready for work as he always does. Which left me - tackling two boys all morning till we left for therapy class. It went smoothly all things considered - esp. since Cody didn't have a seizure this morning! Whew! He had a great day at autism class - even sat ALONE during circle time! Usually it takes a therapist sitting behind him, a weighted pillow on his lap, while sitting in a chair with high sides, and with a toy on his lap to keep him happy! Today the therapist sat away from him and he DIDN'T GET UP! Usually he bolts the minute anyone tries to get him to sit down but perhaps he's learning? yahoo! Course it still took the chair with high sides, the weighted pillow...and a few other tricks to get him to sit. But he sat! Speaking of sensory issues - check this out! Dim lights Embed Embed this video on your site It took me a long time to figure out what he needs to sleep - and it's a lot! But hey.....he slept!!!! As always, I try to appreciate and celebrate anything I can. Trying to have a grateful heart. Trying to practice the sacrifice of praise. trying trying trying. Have you read this article by Jay Leno? I heard it quoted on KMPS this morning (my fave country radio station). Worth the read - it will certainly tweak your perspective! ----------------------------------------------------------------- "The other day I was reading Newsweek magazine and came across some poll data I found rather hard to believe. It must be true given the source, right? The Newsweek poll alleges that 67 percent of Americans are unhappy with the direction the country is headed and 69 percent of the country is unhappy with the performance of the president. In essence 2/3s of the citizenry just ain't happy and want a change. So being the knuckle dragger I am, I started thinking, ''What we are so unhappy about?'' Is it that we have electricity and running water 24 hours a day, 7 days a week? Is our unhappiness the result of having air conditioning in the summer and heating in the winter? Could it be that 95.4 percent of these unhappy folks have a job? Maybe it is the ability to walk into a grocery store at any time and see more food in moments than Darfur has seen in the last year? Maybe it is the ability to drive from the Pacific Ocean to the Atlantic Ocean without having to present identification papers as we move through each state? Or possibly the hundreds of clean and safe motels we would find along the way that can provide temporary shelter? I guess having thousands of restaurants with varying cuisine from around the world is just not good enough. Or could it be that when we wreck our car, emergency workers show up and provide services to help all and even send a helicopter to take you to the hospital. Perhaps you are one of the 70 percent of Americans who own a home. You may be upset with knowing that in the unfortunate case of a fire, a group of trained firefighters will appear in moments and use top notch equipment to extinguish the flames thus saving you, your family and your belongings. Or if, while at home watching one of your many flat screen TVs, a burglar or prowler intrudes , an officer equipped with a gun and a bullet-proof vest will come to defend you and your family against attack or loss. This all in the backdrop of a neighborhood free of bombs or militias raping and pillaging the residents. Neighborhoods where 90 percent of teenagers own cell phones and computers. How about the complete religious, social and political freedoms we enjoy that are the envy of everyone in the world? Maybe that is what has 67 percent of you folks unhappy. Fact is, we are the largest group of ungrateful, spoiled brats the world has ever seen. No wonder the world loves the U.S. , yet has a great disdain for its citizens. They see us for what we are. The most blessed people in the world who do nothing but complain about what we don't have , and what we hate about the country instead of thanking the good Lord we live here. I know, I know. What about the President who took us into war and has no plan to get us out? The President who has a measly 31 percent approval rating? Is this the same President who guided the nation in the dark days after 9/11? The president that cut taxes to bring an economy out of recession? Could this be the same guy who has been called every name in the book for succeeding in keeping all the spoiled ungrateful brats safe from terrorist attacks? The commander in chief of an all-volunteer army that is out there defending you and me? Did you hear how bad the President is on the news or talk show? Did this news affect you so much, make you so unhappy you couldn't take a look around for yourself and see all the good things and be glad? Think about it -- are you upset at the President because he actually caused you personal pain OR is it because the "Media" told you he was failing to kiss your sorry ungrateful behind every day. Make no mistake about it. The troops in Iraq and Afghanistan have volunteered to serve, and in many cases may have died for your freedom. There is currently no draft in this country. They didn't have to go. They are able to refuse to go and end up with either a ''general'' discharge, an ''other than honorable'' discharge or, worst case scenario, a ''dishonorable'' discharge after a few days in the brig. So why then the flat-out discontentment in the minds of 69 percent of Americans? Say what you want but I blame it on the media. If it bleeds it leads and they specialize in bad news. Everybody will watch a car crash with blood and guts. How many will watch kids selling lemonade at the corner? The media knows this and media outlets are for-profit corporations. They offer what sells, and when criticized, try to defend their actions by "justifying" them in one way or another. Just ask why they tried to allow a murderer like O.J. Simpson to write a book about how he didn't kill his wife, but if he did he would have done it this way -- Insane! Stop buying the negativism you are fed everyday by the media. Shut off the TV, burn Newsweek, and use the New York Times for the bottom of your bird cage. Then start being grateful for all we have as a country. There is exponentially more good than bad. We are among the most blessed people on Earth and should thank God several times a day, or at least be thankful and appreciative. "With hurricanes, tornados, fires out of control, mud slides, flooding, severe thunderstorms tearing up the country from one end to another, and with the threat of bird flu and terrorist attacks, "Are we sure this is a good time to take God out of the Pledge of Allegiance?" Jay Leno -------------------------------------------------------------------- Love, Shawna Nov 17,2007 Hi all, well we had another string of seizure free days. Three in a row! Today, though, Cody had a big one. But I like the fact that he's having some free days in between. I'm still praying for seizure freedom by Jan. 14th so we don't have to do that dreaded 6 day EEG at Childrens! We started therapeutic listening therapy recently plus brushing therapy. I won't go into too much detail, you can email me if you want to know more. But the listening therapy is supposed to help with his sensory needs - he wears headphones and listens to a specially modulated CD for 1/2 hour twice a day. It is supposed to "make the ear work" and reach for the high and low tones -- thereby giving his inner ear - which controls his vestibular system -- a work out. That, in turn, is supposed to help him feel more calm, more organized, sleep better, etc. I must say it seems to maybe be helping. But the jury is out till we do it for longer. The brushing just involves a little white surgical brush and I brush his arms, legs & back whenever I can. I follow that up with joint compressions. The brushing & joint compressions help him maintain calm as well - offering lots and lots of sensory stimulation and grounding at the same time. I'm trying to shower him with sensory experiences to fill his tank -- however he's proven in the past that his tank is never full. We'll see. Time will tell. He's such a little puzzle and sometimes trying to figure him out is exhausting. I'm finding I need big breaks from him (and the intensity of him) every so often. Don took him to Salem for the weekend to see his parents which gives me some down time. I think once a month I'm going to take a day off and either go somewhere or have Don take him somewhere. I find that a few hours isn't enough - it has to be a substantial amount of time for me to re-charge and feel like I've truly gotten a break. I wish I was robo-mom and didn't need the breaks because they mean Don has to do double-duty with him...but being with him all day every day is just too intense for me. So I've come up with this plan which will hopefully give me a chance to be a better mom by taking care of myself in this. And this weekend has been great so far. I've done some cleaning, gotten groceries, spent some time tuning in to Casey...his rhythm is something I haven't even been able to tap into because I'm constantly juggling him with Cody. But this weekend I"m really trying to listen to Casey and see what his little temperment is without big brother around dictating it. By the way, breastfeeding is going AWESOME! I got such great advice and took lots of it to heart! I let things happen more naturally instead of laboring over feeding him every 3 hours and trying to "create" a schedule. Instead I threw out the clock and just tried to follow his lead. That really changed things. Now he's willing to nurse with me sitting up instead of laying down! Yay! My next goal is to get him to be willing to take a nap and/or sleep at night without nursing himself to sleep and needing me to continue to nurse him on and off whenever he wakes up. This is a horrible habit we've developed. After that, I'm going to try to work on getting him to sleep by himself all night instead of coming into bed with me at 3am. I will nurse him then, and put him back into his own bed space. And last, I will work on having him feed every 4 hours instead of snacking all day. His temperment is just so casual - he would prefer to snack all day - and he'd prefer to take catnaps all day. He's just not a big eater or long time napper. I think he need for social interaction keeps him wanting to make the naps & eating sessions shorter. He's so cute. I love his little personality. One other thing I've done during this weekend time alone is watch a Beth Moore DVD. It's from her series on "Patriarchs" of the Bible. This was given to me by a friend (thanks Loretta!) who is doing this Beth Moore series in her local Bible Study. Some great thoughts from Beth about Abraham and Isaac (a father in the Bible who had to literally learn to sacrifice his son to the Lord.) Some great quotes: "We'll give Him most of what we love, but we won't give Him what we love most." "Our tests have OUR names on them" "Our hardest tests involve our deepest loves" "When the Lord asked Abraham for Isaac...his beloved son...Abraham replied "Here I Am." "We tend to say, 'I will share my child with you...' but the Lord says, "I want ALL of him." "When God is up to something hard, God is up to something Big." Once again I highly recommend the book, "When I Lay My Isaac Down" by Carol Kent. If you are experiencing any kind of pain over a sick child, or over something you are grieving and/or having to let go of....it's a must read. She drives home the point that our children (or whatever we are grieving) are the Lords. We aren't sharing them with Him. They are His. We can/must trust Him with them. We must let go, "sacrifice" them on the altar, and in doing so, give them back to the One who created them...who knows them best...and in whose keeping they are safest. To do anyting else is to make an idol of them - to cling to the illusion of "control" - instead of surrendering and in doing so, freeing ourselves from the bondage of trying to control this. I have come to the point that I am ready to give up 'fixing' Cody. Don't think, though, that I will fight any less tirelessly to get him well. But I am/have let go of my need to control his future. It's probably called "acceptance" in the grieving process. I've been obsessed for 3 years with fixing Cody. I've had tunnel vision. I've been single minded. I've probably given so LITTLE credit to God in this process -- I've probably relied on Him so little -- because I was SO busy fixing, controlling, freaking out. I just can't do it anymore. It's exhausting. It's pointless. I can't fix him. God can...if He so chooses. I truly believe that. God can heal him in a snap. If He doesn't, so be it. but He can. God's way better at fixing him that I will ever be. I will keep researching, choosing medicines, managing seizures. But I can't keep carrying this whole burden on my shoulders. I must relinquish this job to the Lord - to fix or heal or tend to Cody as He sees fit. I surrender my beloved back to the One who gave him life. Back to the One who chose to allow these seizures. Back to the Great Physician by whose hand healing will - or won't - occur. It is up to Him....not me. Whew. What a relief. Now I can just be his mom. I can just love him, take care of him, and do my best to follow the Lord's lead regarding Dr's, medicines, treatments, etc. But I firmly and happily hand the "God" baton back to God. He's way better at being God than me! I tried - I stink at it. :) As I've said many times, Cody wont' have 1 more or 1 less seizure than God allows. Easier to write all this than to do it....that's for sure. I take back control all the time. But at least I'm in a place where I recognize when I'm striving again. And I begrudgingly hand the reigns back over to the Lord and remind myself that He is in control, not me. Sigh. So hard being a mom, dontcha think? love, Shawna Nov 19, 2007 Darn - Cody had his worst seizure day in quite awhile while he was away with daddy at his grandparents in Oregon. They came back home early Sunday. My poor little guy. We had to dope him up on tranquilizers which always kills me because he turns into a zombie. So hard. Kind of drives home the point of my last entry, though. I can't fix him. This keeps happening. He'll have some seizure free days then in a flash, things turn and he's seizing all day again. I got some wonderful feedback from my last post from some moms with kids who also have seizures. Here are portions of their thoughts on "acceptance." ---------------------------------------------------- Shawna, Your latest post was very encouraging to me for your sake....you're getting to a really healthy place! If you can keep the attitude of not "fixing" Cody, you will find your stress level decrease immensely! ---------------------------------------------------- Shawna, This has been my prayer for you and I’m just so thankful that you’ve hit that “place.” As a fellow mom of a special needs child, I too had to find it. No one can explain it to you, or reason it out for you, even others in the same situation. It’s simply somewhere you hopefully (and prayerfully J) go. I remember so vividly our son and his IS history. You remind me SO much of myself. The beans, brushing, swings, joint compressions, music therapy, vibration. I remember being almost constantly in a panic stage trying to get my son better. I couldn’t will him better, and a large part of this was in God’s hands. You know, there was no moment of enlightenment that this occurred to me. I guess it was after my daughter was born when my son was 4 years old. I think it took me having to be somewhat distracted by her to step back and see the big picture. And what a blessing that was to our family. Anyway, the statement you made “Now I can just be his mom.” Oh my gosh, that just hit the nail on the head. That’s how I feel now as well. I can be informed, articulate, know the latest therapies and still be comfortable with letting him be who he is at the moment and understanding that God has ownership in this. He made my beautiful son, He has a path for him that I do not know completely and that’s ok, and I’m a mom that will love him until the end of time. Shawna, I’m so thankful that God has given you that peace. What a blessing! --------------------------------------- Oh the blessing to know I'm not in this alone. Others have gone before and survived! Acceptance...so hard but so important. love, Shawna Nov 21, 2007 Hi there. Another horrible seizure day - he had a huge one at 4a, 5a, & 6a. Had to give him the diastat rescue med again. I have no idea why this spike but it sure stinks. Please pray for him to kick this pattern if you can. I had Cody's IEP meeting this week (the meeting between me and the school board to discuss his upcoming entry into public school Jan. 3rd!) Oh man, it was emoational. I had prepared with writing down all my questions and requests ahead of time. I showered, put on make-up and even did the hot roller thing in my hair! For me, quite an effort! But I didn't want those school boarders to think I was just another crazy frantic mom. Not sure if it worked but hey, at least I tried! :) I pulled up to the school and boy I got hit with such emotion unexpectedly. There it was - Cody's school. My little 3 year old will be walking through that huge door so very soon. I have to trust this village of people to help him through seizures, teach him, and love him. As I sat in the parking lot, school let out and I saw all the other parents drive up and their kids run into their arms and jump into the car. I instantly started weeping at the sight. Normal kids jumping into a car to go home and do normal stuff. I can't imagine. I was sad and jealous at the same time. Whereas my little "un-normal" angel will walk into that school with all those other kids...will they be nice to him? Will they make fun of him? I know he won't notice or care but Don has already planned to have a talk with each and every child at the elementary school to tell them that if they even think a bad thought about Cody, he'd personally show up to smack 'em upside the head! Haha. I gathered myself together, though, and went inside. Luckily two brilliant and wonderful teachers from the Kindering Center came with me to help me advocate and they were such a blessing. The meeting went fantastic. I couldn't have been more pleased. I met Cody's teacher who is warm and sunny...young and excited to meet him. I loved his team. I was listened to and honored. I went out on a limb and requested some things and got a "yes" to every one of them. I was so afraid (I told them) that the teacher or aides might be too stern...I pictured the old school marms I had in grade school. But these women are the opposite - each one is enthusiastic and caring - sensitive and compassionate. Just what I know Cody deserves. He'll go to pre-school in the morning and autism class in the afternoon 3 days a week. After the meeting, I feel excited at the growth he may make in that stimulating environment. That same day, the occupational therapist at Children's hospital called to check in. I had gone to meet with her twice with all my breastfeeding woes. The last meeting I had decided I would probably need to give it up - it was just causing too much stress. But I was happy to report to her that I hadn't given up and that things were going GREAT! Casey is breastfeeding with no problems - doesn't need to lay down anymore to do it - and is more efficiently eating so I'm not spending the whole day feeding him. Such a great turnaround. She told me she had never met anyone who had tried harder than me - and pulled it off! That made me feel good. After trying to hard to affect change with Cody and never getting anywhere....here's one area where I received a huge pay off for my efforts! I am now a normal breastfeeding mom! Yippee! So it was a good day and I felt very supported as a mom...both by the people in the school district...by Beth-Ann and Jill (Cody's therapist and teacher at Kindering)...and by the OT at Children's. Good day. love, Shawna Nov 24, 2007 Hi all - please pray for cody. He had seizures all day yesterday. We went to our friends home and and then came home - and he had 8 of them between 10am - 4pm. These are the hard core ones that last up to 2.5 minutes. We gave rectal diastat (valium....a rescue medicine) at 7pm. He was fine until midnight and between midnight and 2am he had 3 of them so we just gave him diastat again at 2:30am. If they continue we're off to the E.R. If you happen to be logged on, please send up a prayer for him/us. This is crazy. He's done so horribly lately and we have no idea why. We were so excited to have a 4 day weekend and we've spent the whole thing panicking and managing seizures. No sleep, no fun, and especially for Cody - lots of suffering. "Please, Lord...in Your soverignty...please see fit to give our dear Codybug a rest from these horrible seizures. Please give us a rest from watching them. We are undone by them. We cannot watch another one. Please stop these, we beg you. Please prevent a trip to the Emergency Room and let us manage these at home. We so looked forward to these 4 days together as a family and we have been robbed of any time together that's enjoyable. We are sleep deprived, crazed, sad, and feel helpless. We leave Cody in Your hands tonight. Have Your way in him. Amen." Shawna thanks so much for the prayers if you were able. cody hasn't had a seizure since 2:30am which is when I last posted. the diastat is active up to 10 hours so i'm waiting on pins and needles to see what happens next. he seems fine - just drowsy. I talked to the neurologsit on call at Children's and he recommended just treating him at home unless the seizures go longer than 4 minutes - then call an ambulance. so that's the plan. he prescribed more rectal diastat plus valium tablets to keep him on until this passes. can i tell you how counter intuitive it is to put valium into your little baby? so horrendous. still coveting your prayers. love, shawna Nov 25, 2007 Birtday Boy! Today was MUCH better - thank you for the emails and concern to those who wrote. We never did have to go to the hospital - thank you LORD! We just managed the seizures from home with some well timed valium and lots of naps. He only had a handful of smaller seizures today...and the valium has worn off so I'm thrilled he didn't go right back into huge seizure mode. Sometimes the valium (in the whopper rectal rescue dose) sort of "re-sets" their seizures back to what was "normal" before. At least that's sometimes what happens with Cody. I got an interesting note from another mom who reads this site - she says that lamictal always caused her son to have bigger, harder seizures every time they increased the dose! So now I'm going to try to corelate the two and see if this is happening with Cody too. Tomorrow is his birthday - 3 years old! We already celebrated with cake and such at my sister's over T-giving weekend. That's all I'm going to do. He's completely oblivious - has no conception of a birthday. And to be honest, I'm too tired to plan a party! :) Three years old - 2.5 of those years filled with seizures. The little baby I held in my arms 3 years ago - is now deemed "mentally retarded." I was so happy that day. And I am so happy now - today I choose to be happy he's alive. Many children with i.s. don't make it to their 3rd birthday. Today I consider myself the luckiest mom on earth that my little one is still with me. That he can walk, smile, hug. He fills our life with joy.
3 years ago, on this day at 5:30pm, I heard the words... "you have a healthy, perfect baby boy!" That's what they told me. They told me you were healthy - there was nothing to fear. That's what they told me. --------------------------------------------- What they didn't tell me.... was that 6 months later my world would topple they didn't tell me...they didn't know... that you weren't healthy They didn't tell me I'd never stop crying ---------------------------------------------- They also didn't tell me... I'd given birth to a hero They didn't tell me... God created a warrior in my womb That every day of your life you would put on your armor and fight a battle no human should have to fight and that you'd do it with bravery unlike this world has ever seen They didn't tell me. They didn't tell me. -------------------------------------------------- If I'd have known who I would meet on this day 3 years ago I would have shrunk from the duty. Not because I didn't want the pain. Not because I didn't want you. But because I'd have know how unworthy I was of you. And still am. They didn't tell me that you'd raise me - not the other way around. That all of life's lessons are hidden in your embrace. 3 years old. Yet you've lived more life, lived more pain, than most would know in a lifetime. They didn't tell me how much I could love. How small I could feel. How your illness has healed me. Of selfishness, pride, fear. You - perfect you. They didn't tell me.... I'd given birth to a minister who preaches a sermon with his smile who lives in hospital rooms and in Doctors offices... yet who still, after hours of having wires glued to your little head and monitors attached to your body... after being poked, prodded, tied down - unable to move an inch, for the umpteenth time... that you would manage the sweetest, purest, most innocent smile. A sermon in your smile. Oh, Happy Birthday, my darling one!
love, mommy
Nov 26, 2007 Just a short note - Cody spent his entire birthday seizing. He got up at 5am and had 8 total seizures today. We almost took him to the E.R. twice because he had 4 of them in 1 hour! He got oral valium, tranxene, and finally diastat which (I pray) will get him thru the night. So he's spent the day either seizing or recovering. I'm MAD - yet I have no one to be mad AT! That's the frustrating part. Just plain mad. At the wind. I was on the phone back and forth with Children's Hospital all day today and had my hospital bags packed planning on going in. Luckily he had a break for 3 hours but then they ramped up again so we're waiting overnight to see if he's okay. If he seizes again, we're going to the E.R. Please pray - yet again if you can. love, Shawna Nov 28, 2007 Hi all, just a quick update.... Yesterday was a nightmare - he had 7 hard core seizures. Last night at about 8 the pediatric nurse (who checked in with me 4 times yesterday, bless her heart!) told me we should bring him into the E.R. since he's had so many seizures in the last few days. He's lethargic, not eating, not drinking....just a zombie. She was worried about dehydration, seizures, etc. I begged for one more chance to avoid the E.R. and so we waited just awhile longer and to our shock and amazement...he slept like a rock thru the night and is STILL asleep at 7am this morning! Whew. One more day avoiding the E.R. He must have just been exhausted by all the seizure activity. So we'd LOVE your prayers for a good morning as it is morning time that most of his seizures occur. My friend Carolyn is over in the early morning 3 days this week to help - can you imagine? Losing an extra hour and a half of sleep at night and showing up on my doorstep at 6:45am each day to lend a hand during this heavy seizure time - then going to put in a full day's work at her job? When she shows up, I feel like God Himself has walked thru the door - it's such a relief! Together, we manage both boys and their craziness. What a dear friend!!! Well gotta run, lots to do. I just have to give a standing ovation to Children's - the nurse has been dilligent in calling multpile times every day the last few days - then she goes to our neuro and confers and gets back to me with instructions. And the neuro is very available and ready to answer any questions during this crisis. It's awesome to have the hospital call YOU when you're freaking out - not the other way around. We pray this will pass...I can't take much more of it. Too many seizures and too much stress. Thanks for checking in. Back to my boys.. Shawna Hi all - Cody's doing much better (so far....I'm on pins & needles.) He slept a ton last night and slept like a rock till 7:30am! He usually gets up around 5:30! So no trip to the E.R. I'm grateful I keep getting to dodge that bullet! I even took him to autism class today and he did pretty well all things considered. So big sigh of relief for now. I pray it contines. Check out this video - it's of the guy "Rain Man" is based on. his father was told he'd never walk - and that he should not only be institutionalized, but also have a lobotomy! Wow. Amazing story. http://www.vidmax.com/index.php/videos/view/3672 Love, Shawna Nov 29, 2007 Hello - still hanging on with no seizures. Cody had a decent night's sleep again last night. Of course that's the night Casey chose to be up all night. But at least Don got some sleep because he was on Cody duty. I was feeding both boys this morning...sitting in front of Cody's high chair while having Casey on his bumbo seat on the table right next to me. It occurred to me so strongly how similar these two boys are. Feeding them was almost identical! I'd give both of them a bite (Casey is just starting rice cereal) and I'd have to simultaneously wipe both their chins - wipe the food/slobber off their hands. Anything within their reach, they'd both grab and put in their and try to chew on it (example, a towel...a roll of paper towels...a box of wet wipes...a stuffed animal...a candle.) So everything has to be removed from both their reaches. Both of them get impatient and scream if the food doesn't come quick enough. Lots of similarities. Both are fascinated by shiny things and instantly mouth them. Neither can be alone for long. Only difference is...Cody is like a 5month old WHO CAN WALK! Who knows no danger, doesn't understand "no", doesn't respond to his name. Yet all his impulses are that of a 5 month old - bite, chew, scream, grab. While I am thankful every day for the gift of walking for Cody - it does make life pretty complicated since he pretty much doesn't understand anything. If he were left alone to walk in our house, he'd tip over the garbage cans (his favorite activity) and grab whatever was inside and put it in his mouth. He'd grab the computer and anything else on the table and fling it on the floor. He'd slam doors, drawers, etc open and closed to hear the noise. He'd stick his hand inside the toilet bowl. In short, anything that's not nailed down will be thrown to the floor and chewed on or eaten. Any change in flooring (carpet to hardwoods) would make him fall. Any shoes left by the door would trip him. Throw rugs are for chewing. Windows are for banging. Pictures are for tearing off the wall. Even in his "safe room" (our living room that has been "Cody'proofed) his agenda is: eat the TV remote. Then throw it against the window. Grab all the spongy child-proof stuff off the TV stand and chew on it. Pound on the TV screen. Bite the couch - tear a hole in the upholstry. Lay down and bit a hole in the carpet. Bite own arms. Make himself throw up by sticking his hand down his throat. Try to climb under the couch and get stuck. Poke eyes. Trip on own feet and fall. Trip on any miniscule toy on the floor and fall. This is our life. :) Yet in the midst of the craziness God continues to show me how to have a grateful heart. Today Cody got up at 5:30am. I had given both boys breakfast and after a few hours of craziness, both boys settled and fell asleep at the exact same moment! Casey was on my lap and Cody was on his flat swing. While my instnct was to put Casey down and jump up and get busy...I was prompted to just sit there and enjoy the quiet. I had a moment with the Lord where I got to say, "Thank You for this. For the quiet. For the calm. For this sliver of a moment that will probably change any second. I thank You for it and relish it. My house is quiet. My boys are alive and okay. Daddys at work so that we can live in this house. I can enjoy this for what it is - and for how long it lasts." The secret to contentment, I think, is pausing in the day and noticing. Realizing what's happening AS it's happening. Being thankful for the small moments. Sinking into them. Breathing. For me, connecting to the Lord in those moments and saying thank You. Life flies by so fast. Casey is already almost 5 months old! When did that happen? I remember when Cody was a baby - an elderly man stopped me and Don and said, "enjoy this time. it passes so quickly." I took that to heart. I can always clean. I can always pay bills. But those moments when I can just watch Casey sleep are so rare - when I'm not flying to attend to Cody. So I looked at Casey's little face and hands. Absorbed his sweetness. Prayed for him. And I looked at Cody on his swing from a distance - asleep. I looked at his 10 little toes and thanked God for them. I thanked God for his pale, gorgeous skin...and his long eyelashes that I could even see in a fringe over his eyes from my chair. Gratefullness - I think it may be my ticket to survival. Sure enough, Cody awoke less than a half hour later - but that brief half hour of peace and calm was bliss. Life is what you make it, isn't it? love, Shawna Nov 30, 2007 They're baaaaaaaaaaaaack. Last night Cody had a cluster of 4 seizures and overnight he had them 4 times. I literally did not sleep 1 single minute. so tired. He had another one during autism class. and another one when we got home. so basically, he's spent the last 2 days passed out. ARRRRGH!!! This whole week I've felt SO MAD! So angry! FUMING. Yet no one to lash out at - no one to vent my anger toward. But as usual....God provides....for instance: Here's a funny story - this morning Cody got up at 5am. TORTURE. I sat on the couch nursing Casey (half asleep) while Cody played near the stairs in the living room. I thought I saw some movement out of the corner of my eye. My heart dropped as I saw a HUGE black, creepy crawly spider making a bee-line for Cody as he stood there! As many know, I literally have a spider phobia. Can't even think about one. Can't talk about one. Totally undone by spiders. And this ugly black thing had the NERVE to invade my son's playroom and charge toward him? I DON'T THINK SO! Suddenly I felt the surge - the adrenalin - FINALLY a target for all my unexpressed anger!!!! I flailed to put Casey in a safe place on the couch - I threw the boppy down - I ran and grabbed Cody away from the clutches of the evil one - and I put Cody in his high chair. NOW it was time for me to have my moment with this creature who dared to mock me. I grabbed my jumbo can of Raid and walked down those stairs and there he was. It was as if we were in the Old West and were in a showdown - he on one end of the playroom and me on the other. Me with my can of Raid in my holster and he with....his hairy spider legs ready to run. And - can you believe this - he CHARGED ME! The nerve! RAN STRAIGHT TOWARD ME AT LIGHTENING SPEED! I admit, I screamed and freaked out. I jumped up and ran. I was a coward for a minute but as soon as I tapped into my inner rage....this spider hubris only fueled my fire. I screamed "NOT TODAY SUCKER!" and ran toward him with my finger on the trigger - trying to douse him with a dollup of Raid. I missed and he scurried under the couch. NOW who's the coward!?! With Herculean strength born of a week of watching my son seize and no one to yell at - I lifted the couch off the floor and hurled it a few feet away. And there was my target - scampering for safety under the stairs. I gave my best warrior shriek "AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH" and got within inches and BLASTED him with practically the entire can. No spider has ever been "Raided" so much. He was dead within seconds. I felt the release I'd needed all week! My anger had an outlet. Little did this spider know when he happened into our premesis...that he had ventured into the territory of one MAD mommy looking for someone or something to vent on! Sorry for those who love spiders and do all they can to save them -- I'm just NOT that person. This spiders death did nothing but thrill me. His dark spider presence was an afront to our comfy, beige play room. And I am happy to say that my friend Carolyn (who came by later) smushed him into a paper towel and threw him away. By them my rage was vented and I was back to being petrified of him. Little did I know that the drama of the day had only begun. For the last week or so I've been having some pretty significant heart palpitations. Today I called to make a Dr. appt. and they told me I needed to go to the E.R. - and luckily my friend Kerry was here to accompany me. We decided to leave Casey and Cody both here with a sitter until she said, "casey feels kind of hot" and wouldn't ya know - 101 degree temperature! Does life ever get any easier???!!! So I hauled him into the E.R. with me since I was going anyway. His turned out to be either viral -- or something not too big. We gave him motrin and will continue. I got hooked up to an EKG machine, X-rays, blood work, heart monitors - they really take it seriously when you have a heart palp. Kind of made me nervous. Turns out all the tests were normal and they said it was stress-related. The Dr. told me to "get tons of sleep and avoid stressors." HAHAHAHAHA. Pardon me while I fall off this hospital bed from laughter. I think the last week of constant seizures just got to me - just too much stress. It's amazing how your body can only take so much. They sent me home eventually -- with directions to de-stress -- which I'm not sure how to do. Gotta think on that one. Definitely need to try to work some kind of exercise into my day to release some of the tension. Not sure when to find the time, tho. And sleep....if Cody keeps seizing that's just not gonna happen. We'll see. I'm just glad there were no structural defects or blockages. Just plain old stress. Speaking of sleep - I'm going to go try to get to bed early tonight. Long day! Love to all - Shawna
|
