| December 2006 "No more Keto!" |
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Wow - December already. Where does time go?? I haven't posted in awhile cuz I've taken every spare moment to lay down. Boy does making a baby take it out of you. Every smell is making me nauseous...every thought of food....today all I could get down was sweet pickles (my beloved snack) and cheese. Good thing I'm taking lots of vitamins! Cody's had an interesting week. Most of the days we see 1-2 seizures that were very small. Seemed to be really turning a corner. Then on Thurs. all came to and end and he began his big seizures again - had 6 that day. Since then he's still having the big ones, altho not turning blue (since a week ago thankfully). I can only guess that his reflux or his molar are spiking things. Such a crazy life. He's also found his nose - and finds it quite enjoyable to put his finger up it as far as it will go. So every time I turn around he's got a bloody nose. One more new area where he feels no pain, so there is little stopping him. Now, along with eye poking, 'nose monitoring' will be my new hobby. If ONLY he understood "no" but he does not. For those who have asked about my friend in Germany with an i.s. child, "Timo"...he has made a turnaround! He's still in the hospital (in Germany they keep them hospitalized much longer - for them it's going on months). But the ACTH seems to have worked and his seizures are gone! To boot, his EEG looks normal. Quite fantastic news. I'm so happy for them. That's it for now - happy Christmas shopping! Love, Shawna Dec. 8 Wow - long time since I posted last. To be honest, I'm just SO tired and barfy...I have no mojo to sit down at the computer! All I do is try to get thru the day with Cody and collapse at the end. All typical 1st trimester stuff - and will go away within weeks luckily! Speaking of which, I heard the baby's heartbeat for the first time today! It was fun. Very strong, the O.B. said. Of course, she says my uterus seems larger than it should at this point and that the heartbeat was unusually easy to find...leading her to think I may have been wrong about how far along I am. I told her I'm positive about the dates. I'm almost 10 weeks. So, ladies and gentlemen, looks like we are on our way to another huge baby! With Cody at 11 lbs, she had prepared me for another big one...that's just the way it usually goes. And here we go again! I could care less if the baby is mutantly huge as long as he or she is HEALTHY!! She's having me take the gestational diabetes screening early just in case that has something to do with it. That's a fun test - you drink a jug of sugar water and have your blood taken every hour for 3 hours! Last time I got so naseous and dizzy I had to lay down. Yikes. So we'd love continued prayer for a healthy baby and mommy if you can spare some prayer moments. Also, I found out that I have 3 nodules on my thyroid that need to be biopsied. I'm told there a 90% chance they're benign (yay!) and 10% chance they are malignant. If malignant, I'll have to face the dicey decision of major surgery while pregnant to remove my thyroid. Please pray against any of that. I'm sure it'll be in the benign catagory and odds are greatly in my favor! I'm trying to stay completely medicine free during this pregnancy and an operation definitely would crush my chances of that. Cody's doing much much better. Only 1-4 smaller seizures per day for the last few days. No turning blue since Thanksgiving weekend, thankfully. Whew. We needed that break. I pray he's turning a corner. That's it for now - love to all! Shawna Dec. 9 So much for hoping Cody's turned a corner. Today he turned blue 4 times. Long, gruesome seizures. One even at Costco. What a miserable day. There is just no rhyme or reason to this child. His reflux is going crazy. His molar's coming in. And wouldn't you know...Don and I had his company's big Christmas party tonight. We had his family on slate to babysit - I bought a pretty velvet outfit and we were looking forward to getting out together for a fancy evening. I turned to Don about a week ago and said, "well...if fate is consistent...Cody will take a turn for the worse on the day of your company party." Literally EVERY time we plan to go out together and get a sitter lined up, Cody has his worst day ever. We'd just never even contemplate leaving him on a day when he's turned blue 4 times. So one more occasion missed. One more night where we just manage his seizures and his behaviors. Life is just so dang hard. And it's been so hard for so long. One big blessing in the midst of a crummy day, tho, was some dear friends who stopped by on their way to through town from Bellevue (my old home). Not only did they stop, they put on grubbies and weeded and cleaned up my entire garden patch out front. I was getting so embarrassed - it was about 3 feet tall black sticks left over from the summer's past blooms. I just haven't had a second to tend to it. And these servants stood out there in the freezing cold (despite my protestations!) and dug up weeds, chopped down dead plants, chatted, bagged all the debris, and then off they went! It was an oasis of good in an otherwise horrid day. Thanks Darcy, Delmar, Linda and Cheyanne! Also this past week, another dear friend Terry from Bellevue who has my old job in our church office did the sweetest thing. When I passed the baton on to her, I told her how much I'd miss working in the office at Christmas cuz there is a huge holly berry tree right outside and people could come and snip branches off to decorate with! I loved grabbing a bundle of holly berry branches and decorating my apartment with them. Well she remembered me this Christmas by cutting tons of holly berry for me and boxing it up -- and her husband happened to be driving to Portland one day -- so she had him go out of his way to drop it off at my doorstep! What a nice treat from home! I immediately spread it across our fireplace mantle and everywhere else. It's our only Christmas decoration this year - we are just too darn tired and stretched to put up a tree and such. Oh, I forgot my other decoration...a Homer Simpson singing Santa Claus. You push a button and he swings his hips and says "Merry Christmas and all that crap!" Haha. He kills me. He has about 10 things he says, each one funnier than the next. My favorite is his song, "Deck the halls with Buddy Holly....tra la la la la, la la la Doh!" In the midst of the gruesome world of seizures - my friends provide the bright spots that remind me that God is near. He is tending to my spirits though my church family. It is up to me to look for Him amid the ruin. And He always appears when I do. It's when I focus on me and our plight that I get down. All I have to do is look at my holly berry to remember that we are loved and thought of. God is good. It is a fact. No matter what the world hands us...I trust in the One who came to earth as a little baby and sacrificed all for me. I'm so reminded this time of year how crazy it must have been for Mary to be pregnant (as I am) and give birth to this One who was her child....and her Savior. These are the words to my all time favorite Christmas song. SO profound. Especially the line that says "the Son that you delivered...will soon deliver you." It's called "Mary did you know?" Love Shawna
Mary did you know? That your baby boy would one day walk on water? Dec. 12 Well, I have oficially stopped the ketogenic diet. After such a harrowing seizure weekend, and after Cody throwing up over 20 times yesterday from reflux, I've decided to pull the plug. There may be a time to pick it back up...after this final molar is in...but for now we are taking a break. I'm easing him off of it, not piling on too many carbs at once. I pray for a smooth transition. As we pull him off, we started him on a drug called Topamax to give him some support in case the seizure spike from the change. Our next move is up in the air. Yesterday ha had a much better day - only 2 small seizures. Today only 1 small one so far. I'm hoping and praying that after this molar is through, we will turn a corner. May be wishful thinking. We'll see. I can't tell you how much I hated that diet. Our dietician was WONDERFUL and often let me call her at home even on the weekends! I believe in the diet. But for Cody, it was a nightmare. The dietician even said he's one of her 2 toughest clients ever. She said she's never seen a child reflux so much on the diet. He was constantly constipated. Constantly starving (which kids aren't supposed to be when they're in ketosis.) And being pregnant, fixing the mayo, oil, butter with every meal made me SO nauseous. I even feel sick just writing about it. I can't even imagine the treat of giving him a cookie. Or feeding him until he's full. That's our big news. I have a migraine so I'm not going to post much more - those seizures where he turns blue give me a headache! :) love, Shawna Dec. 17 Darn. The turnaround I'd hoped for is still elusive. Cody had two 2 minute seizures today where he turned blue plus 4 (so far) others. We gave him some valium as a rescue med to try to break the cycle. At least I can say he's not doing worse since we stopped the diet. He's doing about the same. The only saving grace is that for about 4 days after we quit the diet, he only had about 2 small seizures a day. Then boom - these hard core ones the last couple days. Usually - that means he's either got bad teething, reflux or something else stressing his system. I pray it's teething and we can get back on track once this 4th molar is all the way thru. I am LOVING being able to feed him normally. When he went on the diet 4 months ago, he was still eating mostly pureed foods. And on the diet he never got to taste carbs. So the last week he's gotten to eat "firsts" like a cookie, an apple, an m&m...SO fun. And he can pretty much eat anything now! That's a good developmental milestone - he can chew rather than needing everything to be pureed. Thanks God for that! I've gotten so many lovely Christmas photos and cards. It's interesting...reading everyone's "year in review" does get kind of sad. Hearing accounts of families who've been on vacations...whose kids are on soccar teams....who are doing great in school, etc. is tough. Am I jealous? I guess so. I think that's okay, isn't it? I don't resent anyone. It's just a reminder of what we don't have. What we so desperately want. My "year in review" consists of Dr. appts, hospitals, and seizures. Boo hoo...poor me, right? I try to look on the bright side as much as possible. But I am amazed at the sheer statistics. Most all my friends have 'normal' kids. How did we get zapped? How'd it happen to us? How did everyone else avoid the bullet? Questions I'll never have answered. I keep looking for ways God is working this for good - because I know He is. It's a fact. And I do see major blessings as a result of Cody's illness. People I would never have met otherwise. The compassion I feel for others with special needs kids. The courage and bravery I see as Cody fights these seizures. And, of course, my own internal strength and character (I hope) is developing through this adversity. Ultimately, if it brings me closer to the Lord, then it is for my benefit, right? These are the things that keep me afloat. But some days, it is hard not to compare our lives to those who seem to have it "easier." I guess "easier" doesn't mean better. Just....easier. God owns tomorrow. He knows we can handle this - by drawing on His strength. But if you are one of the lucky ones who have typically developing children....I do envy you. I admit it. And yet I receive our lot in life...and look for the good. I don't have to look far. Just into Cody's eyes as he is currently peering at me over his play yard. He is hungry for some more of that yummy new food he gets to experience! His valium has worn off and he's ready to party tonight. And party we will! with love, Shawna Dec. 20 "AHHHHHHHHHHHHHHHHHHHHHHHH"....that is the sound of someone who has just finished all her Christmas shopping! What bliss. Course I did about 1/2 online this year which I highly recommend! Delivered right to your door and most places (like Amazon) offer free shipping. I had to laugh today - did anyone watch Oprah? After my last post admitting I was envious of those who have normal kids....I watched an amazing story on her show. It was a gal who loved skydiving and went time and time again with her husband. He had a videocamera on his helmet and taped them jumping out of the plane all the way to the ground. Well, one fateful time, they both jumped out and you see the camera searching for her in the sky. Suddenly the camera points down and you see her crashing toward the ground with a failed parachute! You hear her husband screaming her name. Well she landed on the ground...flat on her face and stomach. The fall shattered every bone in her face, her legs, ribs, etc. You can imagine. Yet here she sat on Oprah to tell the story. Somehow she survived and was pieced back together. But here's the kicker, when she fell, she was pregnant and didn't know it! So this baby in her womb endured MRI's, Catscans, X-rays, countless surgeries, pain killers, medicines...not to mention the stress of her fall! And he was born....PERFECT. I had to just sit there in my chair and shake my head. At first it just made me mad..."OF COURSE her baby is perfect" I thought sarcastically. Then I thought about it more and it did help me get some perspective. Here her baby survives such an ordeal unscathed. And my baby who was tenderly protected and secure his 9 months of gestation...emerges with a catastrophic illness. That to say, if it were meant to be that Cody be "normal" - heaven and earth couldn't have stopped it. Just like no matter what happened to this sky diver, it didn't affect her baby in the least. Her baby went thru all the "don'ts" of pregnancies...radiation, x-rays, medication...and yet turned out fine. heaven and earth couldn't have stopped that either. Seems each child was just meant to be the way they are....regardless of who they were born to or what the extenuating circumstance was. It's just so hard to imagine that Cody was "meant to be" this way. I still feel like he was meant to be "normal" and something went terribly wrong. I pray God will show me His truth about it. It would be an easier cross to bear if I could really believe that this is exactly how God wanted Cody. But I buck it - and try to fix him - and pray for restoration of his little brain. All those things are okay...but ultimately...I have to come to an understanding that God won't allow 1 more seizure than He wants. God won't allow one skill to be lost that shouldn't be. If God wants him to talk, he will. If not, he won't. It's just so hard leaving it there. Trusting that Cody is under God's control and safe. Instead I feel like he's in constant peril and it's a race against time to stop the seizures and preserve as much of his brain as possible. The truth I want to believe is this: today...Cody is who God wants him to be. Tomorrow or someday, the seizures may stop. And Cody will be who God wants him to be then. But for today - this is who he is - and I need to rest in that. God's not asleep - he didn't lose our address. He knows what's going on. He formed Cody and is in control of his little loved one's brain. Why is that so hard to even write? Because I still don't believe it, I guess. It's a process...a journey...coming to grips with a sick child. But He died for Cody. And He chose to give him life despite what He knew this little warrior would have to endure. Do I trust that master plan - or do I keep striving - fearing - dreading? I'm not there today, but I will be there sometime. Sooner, I hope, than later! Thanks for letting me be real. Shawna Dec. 21 Well we saw Cody's neuro today. Suggestion? More drugs. Ugh. I knew it was coming. There are many many more drugs to try - each with it's own gross side effects. The one common factor for all anti seizure drugs is that they keep Cody up all night. That's the worst. But with the diet in the past - we must do something. The neuro said to give it 2 weeks till his molar was all the way in before we started anything. My dear friend and across the street neighbor Judy was kind enough to spend 3 hours at OHSU with us - helping wrangle Cody so I could give the Dr. my undivided attention. And....I hate to even write this cuz it makes me cringe...Cody bit her on the forearm! Poor Judy - she was so sweet about it. But the little shark put a slice in her skin and actually drew blood. I was MORTIFIED. He just does NOT understand much and tries to bite anything he can...toys, people, himself. Judy, you are such a dear. And I'm sure you're on your way as I write this to the Dr. to get stitches or a shot. So crazy. I'm so sorry. The neuro also prescribed oxygen + mask for Cody's seizures when he turns blue. He said he doesn't think it will do much as it's the seizure that controls his breathing so he won't breathe till it stops. But at least it's a safeguard. He seemed kind of unphased by my statement that Cody turns blue daily. So I looked at him and said, "DO YOU UNDERSTAND ME? I MEAN HE TURNS B-L-U-E!" Still...kind of blase! Unbelievable. So that's our big news of the day. Altho personally, my big news is that I *think* the nausea from the 1st trimester is going away! I do feel better. And I think I'm 11'ish weeks so that would be the right timing. Oh please...let it be so! :) I have an "old lady" ultrasound (as I call it) next week. At my age (42) they like to do an "ultra screen" early on to rule out any genetic abnormalities. On one hand, I'd have the baby either way (of course.) So I'm tempted not to do it. But on the other hand, what a relief it would be to rule out some of the genetic issues that come along with my age. So I think we'll give it a go. That's it for now - love to you all! Shawna Christmas Eve! Merry Christmas everyone! We are just heading out for 2.5 days in Gig Harbor to visit my family. We are staying in a hotel and if you know me at all, you know what visions are dancing in my head. No, not sugar plums....visions of CABLE TV! Haha. We're so cable deprived. We only get a few channels at our house. So yes, I will be enjoying my dose of Cable this weekend! I'm also looking forward to seeing my best friend since I was 13, Mike, who will be in town. My sis has 4 kids, 5 dogs, 2 horses, and a bunch of baby kittens so it is quite the extravaganza! We'll see how Cody takes to all the animals! We started him on Keppra yesterday after 2 horrible seizures. It'll supposedly take 2 weeks to become effective. Last year on Christmas day...Cody became seizure free for 3 months. I will never forget that Christmas gift. I pray for the same present this Christmas. If we get that gift, I won't need another gift the rest of my life! If you get this post in time, please join us in prayer for a Christmas miracle - that our dear little Codybug will be free of these life robbing seizures. Love to you all - we are blessed to remember Jesus' birth - and how it made all the difference. Shawna Dec. 27 Happy post-Christmas! We just got home last night after two night at a hotel near my sister's house which is 2.5 hours away. We always sweat when we leave town - never goes well. This time....it had it's good and bad moments. On Christmas Eve, Cody woke up at 4am for the day. Picture one room, 1 king size bed, Cody ready to party...and Don and I just staring at each other in a haze. We weren't due at my sister's till 10am so we just looked at each other and said, "what do we do for the next 6 hours?" Well, Cody showed us what we would be doing. He found a valet cart in the hallway and laid down on it and started whacking it with his hands (his way of saying "go!") So we took turns pushing him up and down the hotel corridor while he lay there staring at the lights on the ceiling go by - and he draped his hand over the side to be able to touch the carpet as he was pushed. That's my boy - needs constant movement. He was mesmerized and we were just happy he was finally being still! We did get away a couple of times - my family watched him and we went to a movie one night even! Had a great Christmas day (despite the bags under our eyes) and exchanged some fun gifts and had a great dinner. Poor Cody had about 4 horrible seizures per day which was no fun. He seems to fancy holidays for turning blue. But that night, thankfully, he slept thru the night in bed with us. We brought a playpen, but he has seizures during the night and always winds up in bed with one or both of us! But he was a trooper overall, I have to say. He got to see his 4 cousins, aunt & uncle, and grandma...and was sufficiently doted on and loved. We also discovered mashed potatoes and gravy is his new favorite! His new drug, Keppra, isn't having any side effects yet - almost a week on it. Seizures aren't any better but it's supposedly not effective for 2 weeks so we'll see! That's our news - we survived! Hope you had a wonderful holiday - here's to a smooth 2007! love, Shawna Dec. 30 Wow - Cody had a seizure free day yesterday!!!! Not sure where it came from - the day before he'd been up all night (literally) having seizures constantly. We had to give him valium to calm down his system. The valium could have influenced his day and helped with seizures. We'll see how today goes. I've learned not to get too excited or too down on a daily basis - things change on a dime with seizures. But for yesterday, we are grateful. For one day without watching Cody lapse into those horrible things, we say Yay Cody! Yay God! I had my 1st ultrasound yesterday - and the Dr. said the baby looks absolutely perfect! Course they ran a blood test and did some measurements to determine whether there may be any chromosonal abnormalities (Down's syndrome, trisomy 18, etc.) which is standard procedure. I find out about those in 1 week. But Don and I got to see the little critter and what a cutie! It was moving around a ton - very active! We saw it's arms, legs...little backbone...face. It's about 4 inches long they said. No telling gender, tho, darn it! Too early - I'm only 12 weeks along. What fun. Now we are enjoying a 4 day weekend and are actually going on a date tonight! We got a gift certificate to the local theatre for Christmas and our dear friend Kristen offered to babysit tonight....so off we go! We're also treating ourselves to back massages today. Cody, at 40 lbs and needing to be carried much of the time, is KILLING our backs! Add a pregnancy to that and you've got one sorry customer! So that will be wonderful. As the new year sneaks in upon us, I found this writing by Hannah Whitall Smith that I am making my goal: "It is a simple fact that we see what we look at and cannot see what we look away from. We cannot look to Jesus while we are looking at ourselves. The power for victory and the power for endurance are to come from looking to Jesus and considering him, not from looking to or considering ourselves, our circumstances, our sins, or our temptation. All looking at ourselves causes weakness and defeat. The reason for this is that when we look at ourselves, we see nothing but ourselves, and our own weakness, and poverty, and sin; and we do not, and cannot, see the remedy and the supply for these, and as a matter of course we are defeated. The remedy and the supply are there all the time, but they are not to be found in the place we are looking, for they are not in self, but in Christ; and we cannot be looking at ourselves and looking at Christ at the same time. It is a simple question of choice for us, whether it shall be I or Christ; whether we shall turn our backs on Christ and look at ourselves, or whether we shall turn our backs on self and look at Christ." Cool, huh? Shawna
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