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Aug. 1
Well, I finally got to speak to my unreachable neuro today. He had the nerve to call and say "I've received all these messages from you - did you need to speak with me?" I let him have it about 3 weeks and no EEG results, etc. He apologized and said their office is just overloaded and can't keep up with patients properly, etc. He actually took responsibility and said I should have received better care. So that's that...and that's the end of him. We will start Cody on Vigabatrin in about 3 days - for about a 2 week trial run. That's all the new news for now! cody had a rough day - 11 seizures. Yet he smiled in and through each one. The little guy amazes me.
Thanks for checking in.
with love,
Shawna
Aug. 3
Hey there folks,
Tomorrow we start a brand new drug, Vigabatrin. This is the one not often used in the U.S. because of a chance of peripheral retinal damage in 30% of patients. Would you please pray 1) That it would STOP these horrific seizures! 2) That Cody would be protected from retinal damage and any other side effects (sleeplessness, irritability, etc.) This is a huge step and has been approached with much prayer, thought, and advice. Also, prayer for SLEEP for all of us - Cody is up all night still - either from drug side effects or teething on top of it all. I'm going on 2 months of about 3 hours of sleep a night and it is taking it's toll.
I FINALLY talked with the neuro yesterday - the one who has been stonewalling me (soon to be known as our "former" neuro!) He shockingly admitted that it's been their fault - that they are just too solidly booked for a case as dramatic as Cody's - and that we need to see someone with a private practice to give Cody the kind of monitoring he deserves. That is what I had already decided to do - but it was nice NOT to have them blame their negligence on me being too demanding or high maintenance! Cody does deserve and need more close attention - and we're going to get it by switching to Dr. Pohowalla as of this Monday! Prayer for that appt. would be great - for a good relationship to develop and most of all, for this neuro and his staff to develop a heart for Cody and to have wisdom in how to treat our superhero (formerly known as "hero" but now bumped up to "superhero" status!)
The EEG showed great normal brain activity in between seizures with some slight abnormalities during sleep. The Dr. doesn't think this this is infantile spasms anymore - but maybe "I.S. with a twist." The twist meaning it has morphed into a different seizure disorder that has "tonic" elements (means stiffening of the body when seizing and a specific type of brain wave associated.) He has no more of the classic I.S. "hyppsarythmia" (crazy, chaotic brain waves) on his EEG. The Dr. feels the keto diet is our best shot (we start in 1 month) but that trying Vigab in the meantime is a worthwhile idea. He says Cody still doesn't fit nicely into any seizure disorder and this is brand new ground Cody is breaking (we knew our boy would be a trail blazer!)
I've been worried that Cody seems to be more "floppy" and have less head control - sits up less often by himself, etc. The neuro chalked most of that up to depakote side effects because his dose is so high - and I hope he's right. My fear is that there is some delay setting in - and we just won't know until Cody is drug free how much or how little he may be delayed. He is still trying to crawl, and is pretty alert and happy most of the time so that's still good.
I had to leave the keyboard for a moment to check on him while he was napping and I walked in on him having a seizure - trembling and staring at me with this look of "what's happening to me?" Watching his little head and limbs jerk back and forth makes me want to say, for the 100th time, PLEASE GOD, MAKE THESE SEIZURES STOP. I just can't take them anymore. Lord, please answer this prayer.
Praises: We thought Cody's tummy pain seems to be lessening (we thought he was developing pancreatitis from the depakote but false alarm.) Our wedding anniv. is Aug. 10th - 3 YEARS! We will have someone watch Cody and take a much needed date night to celebrate and re-charge (can you fly to Hawaii and back in one night?!) Cody smiles more than any other human being on the planet - that's a praise! He survived a horribly decreased immune system with no colds, viruses, etc! He is losing his chubby steroid cheeks and is looking like our little boy again. Don LOVES his new job.
God is showing us lots of things to be grateful for in the midst of feeling glum about our "lot" in life.
That's our news for now. I will be adding to the "latest news" on our website every couple of days and will reserve these direct emails for bigger stuff. As always, thank you to our prayer warriors out there - what would we do without you? You are in our hearts and minds constantly. We remain hopeful and are ready to claim victory over this dark disease.
With love,
Shawna, Don and Cody
August 4
Well, we start Vigab tonight - please pray for an easy transition! I'm almost sick to my stomach thinking of starting Cody on yet another drug - putting it into his tiny little body. Breaks my heart. But I'm trying to focus on the drugs as "healers' rather than evil things! ANything that can stop these seizures will be celebrated in my book. His seizures have been pretty violent today - so scary and sad. He'd had 3 before we even got up today at 7am. Quite a cruddy way to start the day. I had someone come over today and took an hour and a half nap which was heavenly. We took our first "public outing" (other than to a dr. office) yesterday to Fred Meyer (of course to pick up a prescription!) It was so fun to ahve Cody out and about - I almost felt normal. Other kids were going by in their carts - people were stopping me to tell me how cute Cody is! Only bummer is that he has lost so much head control that I had to hold him up in the cart. He was strapped in but was pretty shakey. I need to find some contraption that makes those carts more do-able for us. We stocked up on plenty of his favorite food - squash! Believe it or not, he LOVES his veggies and won't have anything to do with fruit (usually the opposite way round!) It's because all his medicine is flavored like fruit. But I love it that he loves his veggies! That's all for now, thanks for checking in!
love shawna
Aug. 5
We waited to start the vigab till tonight rather than yesterday. When it came down to it, i just couldn't put a brand new toxic drug into him. I waited a day and prayed that God would take the seizures away so I wouldn't have to. Alas, it didn't happen. So tonight was his first dose. I pray it will help.
It was a tough day. Cody wasn't himself - he has 3 new teeth coming in. And he's just a lot more "floppy" and dazed than normal. We got the okay from our Dr. to allow him to see other kids since the steroids should be pretty well worked out of his system. So we went to my neighbor, Deb's house. She has 4 kids and also watches an 8 month old - same age as Cody. It was disconcerting to say the least. I wanted Cody to be around other kids, especially one his own age - since he's been stuck home with me for 3 months. Altho it was fun, it was painful seeing him compared to the little girl. Granted boys develop slower than girls, and she has kids around her all day giving her incentive. I know that every child develops differently as well. But 2 weeks ago Cody was sitting up and trying to crawl. Today, he just layed on the floor. When we tried to sit him up he kept tipping over. I pray that this is a side effect of the upped dose of Depakote of late. It was so very painful to watch him not even try to do what he was doing 2 short weeks ago. And to see this little healthy girl standing up on her own, crawling all over, talking...it made me sad, jealous, mad...and depressed. Babies with epilepsy often stop developing while on these severe drugs - only to regain what they lost when the drugs are finished. But once seizures are controlled, they keep them on that drug for at least 2 years. Luckily the depakote isn't working so he will be off it by month's end and we will see if this floppy stuff was from the drug, or from true regression. But I've heard that Vigabatrin does pretty much the same thing - stops them developing in their tracks. There's just no outcome that feels okay to me. Even if - by a miracle - the Vigab. works...we are looking at a high percentage of vision loss - and at least 2 years on the drug - potential developmental delay while on it...and we have no idea what this drug could do to him long term in his life. Tonight is rough and I feel depressed - I need to sleep badly. No sleep so exacerbates whatever I'm feeling. Don is taking Cody all night so I can sleep, thankfully. He is such a great partner. For our anniv. he bought me an afternoon at a Spa tomorrow. That will be nice...altho I can't imagine relaxing knowing Cody is home having seizures.
Thanks for reading - sorry I"m not more positive but I'm trying to stay real. This is just so heart wrenching. Cody had 10 seizures again today. If this vigab doesn't work - we will have no more high power options. I was so hoping God would remove these before I had to resort to Vigab. It's so hard to understand when He says no. That would be a good title of a book: "When God Says No."
With love,
Shawna
Aug. 7
Hello prayer warriors...
Just a preliminary report that after 2 days on Vigabatrin, Cody had 7 seizures yesterday (down from his usual 9-11) and only 4 so far today! Usually by this time of day he's had at least 7. We pray that it's the new drug kicking in and not some fluke. Vigab is unusual in that it usually begins to work to some degree immediately. And the good news is that he is on a low beginning dose and we still have lots of room to pump it up if we need to.
All that to say, we are requesting immediate prayer if you would, that this trend continues! The seizures he's had today have been very mild as well - much less jerking of his neck, arms & legs - kind of more subtle looks to the left and small body clenches.
He was doing so well we took him to church today - out in public and everything! We see our new neuro tomorrow so I'll send more then about that and whether his seizures are still getting fewer!
For now, PRAISE THE LORD! And keep praying, please - for seizure control and for protection for his eyes!
with lots of love,
Cody's mom!
Aug. 8
Well, today was not what we'd hoped for in so very many ways. Cody's seizures were back up to 8 which is the opposite of where we thought he was headed on this new drug. That doesn’t mean Vigabatrin isn't working - it just doesn't seem to be the instant fix we were fantasizing about after the last two days.
Our biggest concern is that Cody's limp as a noodle - barely able to hold his head up - and we don't know why. He's also groggy and sleeping excessively (that's normal due to a new med kicking in - but still so creepy to see him so lifeless. Today he sat for 45 minutes next to Don and never even looked his way - like he was in a stupor.) I've been complaining about his "floppiness" for the last 3 weeks...and today it's the worst yet. I think it could be the depakote. The neuro we saw today thinks it's the seizures getting to him (one of the first things to go is muscle tone.) We are freaking out as you can imagine. I'm not sure what to do with his meds - or what to think or feel. I’m calling all the Dr's tomorrow to see what they think we should do.
We had our first meeting with his new neuro today which was another disappointment. He seems like a competent and great guy - but having been on vacation all last week he hadn't even cracked Cody's file. So we spent the entire appt. going over family history, etc (which we've done a dozen times with other Dr's already!) We will meet with him next week after he's gone through Cody's file, his EEG reports, etc. All he did today was give us a weaning schedule for the depakote. So we got no new news.
Prayer requests:
For this scary floppy thing to go away and/or to hopefully be from the drugs and not developmental delay beginning. The big bummer with trying all these various drugs is that they all have such gross side effects that affect each child differently...there's no formula. Most of the time the Dr. just tells you to "ride it out." (Easy for them to say!)
For God to remove the seizures using Vigabatrin, a miracle, or whatever other means He chooses!!!
For protection of Cody's eyes while on Vigab...due to the 30% chance of retinal damage.
For wisdom for us as we continue to struggle with Dr's. I like this new guy but he's only treated one patient on Vigab. before because it's such a new drug in the U.S. We can still choose between him (Dr. Pohowalla) or the Neuro in charge of the keto diet (Dr. Schimschock). We will know more after we meet with Dr. P next week and hear his game plan on what he wants to do with Cody.
For our spirits as we continue to navigate all the hurdles of this dreaded disease. Don and I are struggling to stay positive with Cody changing so much. We were so excited because the Dr. lifted the ban on keeping Cody at home and this week I took him to Fred Meyer - we took him to church - I went to a friend's house. We were just beginning to feel somewhat normal after being shut in our home for 2 1/2 months. There just seems to be a new hazard around every corner. We are bone tired of worrying. I try to give this to the Lord, but I always manage to swipe it back! It's amazing how trusting God is so easy...as long as you get the outcome YOU want! This is such a long, hard battle...with endless twists and turns.
Thanks for your prayers as usual - I will keep you posted on Cody's condition.
with love,
Shawna
Aug. 9
Hello there,
Well, MUCH better day today. Cody had 6 seizures and 2 were almost undetectable. He's still very "floppy" but it's like he woke up overnight and his personality came back from "zone-out land." Yesterday was incredibly frightening - I almost took him to the E.R. He had no muscle tone whatsoever. A Dr. I spoke with today says he thinks it's from the two meds that Cody is on and how they combined.
And speaking of that Dr...we had a fantastic turn of events! Dr. Harry Chugani, who is described in newspapers, magazines, and by ABC news, as "one of the world's top pediatric neurologists" and "the world renowned pediatric neurologist" - called ME at home today and talked to me for a half hour about Cody! He is the head of neurology at Detroit Children's Hospital in Michigan. It's ranked at the top of all Children's Hospitals in the country. I belong to an online forum for parents of babies with infantile spasms who fly from all parts of the country to see Dr. Chugani.
He's written books, articles, and is responsible for much of the pioneering research done on infantile spasms and epilepsy. So I tracked him down and emailed him about Cody on a Sunday 3 weeks ago - never expecting an answer - and he responded to me that day! Since then we've emailed back and forth 10 times and I sent him to Cody's website. He is AMAZING! I told him he could charge me for all the help he's given and he said he wouldn't think of it. He seems to be fascinated that Cody is still developing so well.
He makes the Portland neuros sound like they've only made it through Jr. high by comparison. This guy invented a PET scan machine for infants this year - a first of it's kind. After reviewing Cody's case, he said Cody may have a focal point to the seizures caused by a lesion on his brain. If we came to Detroit for 3 days he'd like to do a PET scan (where they sedate him and inject a radioactive (ugh) element and see how his brain metabolizes it), another video EEG and a Dr. visit. So we are flying to Detroit at the end of this month. He said we would then visit every 2 months and in the interim he would work with our Portland neuro on Cody's case. It's ONLY the Lord who orchestrated this - and it is an answer to prayer. THE expert in the country wants to see Cody!! Yahoo! Now I have to work with insurance to hopefully get it paid for - although we are going either way.
What I REALLY liked about him is that he's not content to just treat the "symptoms" of epilepsy (seizures) with drugs. He wants to find the CAUSE. Every other Dr. just wants to drug him, quell the seizures, and call it good. I can't tell you how relieved I am that Cody will be in his hands soon. THANK you for praying through the barrier I've had with Dr's. I consider this a miracle.
Another miracle is Cody's website: www.crazyforcody.com It was meant as a simple way for all of you to check his progress without me bombarding your personal email boxes (which I'm still doing...whoops) And it has become such a blessing to me! The following is an example of the many emails I receive from total strangers:
Shawna,
I just happened on your website from a blog
I read on the Parentcenter. Your website
about Cody was mentioned there and I was just
drawn to it. I have just finished going over
the whole site (2 days), and I just wanted you
to know that you have another person praying
for your family now too. God bless you, Cody and
Don. You and your husband must be really special
people for the Lord to have sent Cody to you.
He is a beautiful, beautiful little boy.
I am very sincere when I tell you that I will
mention him every time in my nightly prayers.
Take Care and Godspeed...
(From Barbara Kaye - Massachusettes)
Another person emailed me: "Our JEHOVAH-NISSI, 'the Lord our Banner' is in front of your family leading the way. JEHOVAH-ROPHE, 'The Lord who heals' is your rear guard. His angels surround and minister to Cody at all times."
We are still living in fear and distress over Cody's seizures - but God is showing us what to do with that fear. Because I'm a control freak, I need for there to be an "end" to this trial. But I keep hearing: even IF Cody's seizures stop now - they may return later in life in another form - they may return next month. In other words, we will never be able to say "done." It's as if God is taking a scalpel and cutting into the very area in my life that is most cancerous...my need to control. It feels so unsafe, so uncertain. Yet my only choice is to surrender all to the One who made Cody - trusting that I may not know the future, but I know who holds Cody's future in His hands.
Can I just say I HATE this particular life lesson?
With lots of love,
Cody's mom
Aug. 12
Hi there - happy Friday!
To address Cody's "floppiness" this past week, our neuro dropped his depakote level to almost nothing and cranked up the Vigab. level - and as a result he's back to his old seizure tally of about 11 a day. But the neuro said not to panic because Cody has to adjust to all the different levels in his blood and to give it 3-5 days to even out. Easy for him to say! It was so nice to have only 5 seizures 3 days ago! We are praying that the Vigab kicks back in and begins to control the seizures once more. So for now, we're back to seizure-ville...and bummed...but hopeful. He's back to his non-floppy self - has good muscle tone and isn't as dazed as he was while on the high level of depakote and Vigabatrin together.
Now that the Depakote is leaving his system, we are also on the lookout for some developmental stuff to begin again...in the hopes that his lag is due to meds rather than the seizures beginning to delay him.
We're also hoping for some sleep! He wakes up at 4am on the dot every darn morning...after having woken up at least twice during the night...and Don and I are zombies...taking turns getting up with him and trying to make it through the day on no sleep.
On the upside, we had a great anniv. although we didn't go out on the date we planned because Cody was so floppy and "not himself" that we didn't feel comfortable leaving him. We ordered take out Thai and had a picnic on the floor and watched a movie...and took some time to re-connect as a couple. We started by saying, "who are you again?" Although Satan has tried to tear us apart during this trial, amazingly we are still stronger than ever as a couple and grow more in awe of each other as each day goes by. Don's ability to care for and worry about Cody - while attacking a new job and proving himself - is astounding. He says he's equally astounded by my ability to handle all this. We are each other's Rocks - and together we go to Jesus, our high tower - for strength for each day. One day at a time!
Our insurance will pay 70% for our trip to Detroit (thank you, Lord!) and I am appealing for a higher % which is taking many man hours of writing, calling, faxxing, etc!
With love,
Shawna
Aug. 14
What a cruddy turn of events. Cody's had 10 seizures and it's barely noon. We are so frustrated. Since taking the depakote down, we bumped up the Vigabatrin - and the seizures have increased greatly. Bless Dr. Chugani's heart (the big dog Dr. in Detroit) - he has emailed me 3 times over the weekend over this turn of events. Can you believe that I can't get my neuro on the phone HERE during the week, yet the country's top pediatric neurologist has emailed me 3 times over the weekend? It has saved my sanity. I heard from another of his patients who is also one of his good friends, and he says that Dr. C. and his wife just both have a huge heart for these kids. bless them!
Anyway, he says to wait another 4 days at this dosage and if it doesn't get better to bump it up another 250 mg. which will be the maximum dose. We had SUCH high hopes for this new drug. It is heartbreaking, maddening, and crazy to watch Cody have this many seizures when they had gotten down to 5 a day. Noone has told me yet why the Vigab. worked immediately, but once we removed the depakote, it didn't. Dr. C. said we may have to put him back on the Depakote which would be a nightmare because that's what made him so floppy and dazed. However, many kids like Cody wind up on a combo of 2 meds to get seizure control, then they stay on those 2 meds for at least 2 years. The thought of that makes me ill. I just HATE cramming these toxic drugs into his little body - not knowing what side effect to expect next or what they'll do to him long term. Yet we have no choice.
He's also up all night every night (don't know whether it's teething, drug related, or what.) So Don and I are still constantly sleep deprived which doesn't much help our ability to stay positive. I am just crushed...and frustrated. I feel such a sense of loss over so much. I never even got to nurse Cody due to his reflux in the beginning - and then when I finally had a good shot at it he got these seizures. Not being able to nurse him for more than the first couple of months is heart breaking to me.
Gotta go, he's waking up. Thank you for your prayers - I'll keep you posted on this new turn of events. We love you All!!
Shawna
Aug. 17
Hello there...
Poor Cody - not only is he cutting 4 TEETH on top and 3 TEETH on bottom at the same time...he has a horrible cold and can barely breathe. He is up and crying all night and having seizures all day. Please pray for him (and us!) Any cold or irritation like teething can lower the seizure threshold a ton making them double in number...and we are definitely seeing that. The last 2 days he's had nearly 20 seizures each day. He's just miserable on every level. The cold is very disturbing because his immune system is still so shot from the steroids so he is a risky candidate for pneumonia, etc. Prayers for protection would be awesome. And as always, for SLEEP for Cody - which means sleep for us!
Other disappointing news...we couldn't get in to see Dr. Chugani in Detroit until Oct. 12th! I guess we're super lucky for that date because his first opening isn't until December and he's gone half of September. He's "squeezing us in" as it is. So we'll bide our time until then, I guess. We met with our new neuro again today. He thinks Cody definitely has infantile spasms but that it has become a very mild version. He was impressed that Cody is still doing so well - said most kids at this point would be very delayed at the least. But Cody still can zone out for as long as 20 minutes - no eye contact - doesn't even blink. It's very disturbing. I think it's medicine related. Speaking of which, we're going to up the Vigabatrin one last time and up the depakote a little bit to try to get some seizure control. If the Vigab doesn't work in 1 more week, we're calling it quits. What a disappointment there too. We had such high hopes for that drug - it worked so well in the beginning and then just stopped. The teething is probably contributing to the seizure increase, but the Dr. said that this high of a spike in seizures can't all be teething related and thinks it's the vigabatrin not working.
Pretty tough day. This Dr. (unlike our previous one) is alarmed by Cody's seizures and the high number of them and wants to see us every week - and be as aggressive as possible - to get them under control. I'm blessed by that. Cody had one right in front on him (thank you, Lord!) and he was very sobered by watching it. He fears the Keto diet would take 2 months that we don't have. He thinks it would be better to keep attacking with meds until we get control of them. Especially since Cody's hit a plateau in development and we don't know if it's seizure related or medicine related. He has a huge amount of respect for Dr. Chugani in Detroit and said he would be happy to work with him for Cody's best (wow, a neurologist without an ego!) I really like this guy.
But I am heartbroken (once again) at MORE drugs - and MORE time waiting on those drugs while Cody has seizures every day. We begin developmental therapy at the hospital this month. So painful to even write that. I PRAY Cody's just doped up on meds and this isn't delay setting in. Whereas he once tried to crawl everywhere, now he just flips over on his back when put on the floor. He used to hold his own bottle and reach for the spoon - and now he just lets us feed him. He's still bright eyed, alert and happy a lot of the time - he just seems to have stopped trying for milestones like crawling and such. Is it the meds or delay setting in? We don't know and may not know till he's off meds completely. I'm just bereft over it all - and at my wits end. Thank you once again for caring enough to read this and lift us in prayer. The weight of decision making as well as drug and Dr. choosing is heavy.
Thanks so much for your prayers and concern. Life is painful, isn't it? And I know we're not the only ones being pierced by a trial right now. Praise God we have a home on the other side of this pain - a place where we will be pain-free, seizure free, whole and happy for all time. Till then, it's nice to press on knowing that you are all in our corner...loving Cody...and carrying this heavy burden with us.
Speaking of heavy, did you know that it is aerodynamically impossible for a bumble bee to fly - based on wing shape, weight and proportion? But fly they do! I suppose we could all take a lesson from the bumble bee -and trust we are able to rise above despite the laws of the world the are "supposed" to confine...and despite the heavy weight of our circumstances...FLYING even though it should be impossible!
"But those who hope in the Lord will renew their strength, they will soar on wings like eagles" (or bumble bees!) Isaiah 40:31
That's the "buzz" from Battle Ground!
with all our love,
Shawna
Aug. 18
Cody's seizures are down from 17 to 10 today - praise the Lord for that. Still a tough day with coughing, stuffy nose, etc. We visited our pediatrician today (Olivia Jones at Creekside Medical in Vancouver) and what a blessing they are. They truly love Cody and it touches my heart. They sent us a beautiful card of encouragement from their office staff - they are going to all stay after work and babysit Cody one night so Don and I can go on a date - they are the counterbalance to all the hassles, frustration and stress I've had with the medical system.
Dr. Jones grieves with us over Cody's diagnosis and has shed many tears for him...just as we have.
I've spent the evening preparing for my chance to speak tomorrow to a forum of Residents in training, med students, Dr's, etc at OHSU. I will be part of a panel discussing what's "right and wrong" with the medical system from a parents perspective. Oh, if you could all only be flys on the wall!
Aug. 19
Cody's Vigab was increased this morning and now he is a floppy guy again - very alarming. His legs are like spaghetti, he's distant...once again I am at a loss for what to do. One Dr says to increase the depakote, one says to decrease it...such a dilemma.
He's had 6 seizures since midnight. He was up ALL night from his stuffy nose. Just a crazy life.
I was up at 5:15am to leave at 6:15 for OHSU where I got to speak to a room full of Pediatricians, Dr's in training, Chiefs of staff, etc about "Parent Advocacy." What a blessing for me. I told our story - I expressed my frustrations with "the system" - I cried, they cried. It was very healing to be "heard." Many of them approached me afterward and said "thanks for reminding us to care more" "every doctor needs to hear what you said today" "you have reminded me to treat my patients with more humanity" etc.
I genuinely felt the Lord using this trial already to affect change -even if it's only in my tiny corner of the world. I talked of how Don and I used to go to OHSU to get Cody's reflux treated (when THAT was his only problem!) We felt so guilty being in the midst of other parents of children who were walking with chemo drips, wearing helmets, confined to wheelchairs...here we were strolling thru with our perfect chubby boy who's only problem was acid reflux. When we'd go past the waiting rooms for the specialists, I'd see parents with their children in various states of fragility...and I'd always tell Don, "those parents are HEROS. Noone knows it - they get no acknowledgement - but they are angels walking the earth for what they have to go through - watching their children suffer - living in dr's offices and hospitals."
Now...I am one of them. But when I go to the Dr, I don't feel like a hero. I feel like a number...who has exactly 45 minutes to cram my 100 questions into...who is at her wits end and no one cares. They all mentioned that they connected with that story especially. How wonderful it felt. Too bad none of my current Dr's were in the room, darn it!
The other mom who spoke has a son on a trach and a ventilator. She said that prior to inserting the trach permanently, she took photos of her son's neck "before" to remember...and she spent hours just kissing and nuzzling his little neck where she knew the tube would forever be. I bawled.
There is one very specific thing the Angel of Pain has given me through this ordeal - it is the gift of being emotionally "present" -in the moment - at all times. My empathy and tears are at the surface when encountered with anyone else's pain - or my own pain. It is a serene place to be, in a weird way. I feel very centered and grounded in the truth of what life is really about - and I live in the center of that every minute of every day. In the past, it was easy to be self involved, distracted, worried about things that didn't really matter. Now I feel intimately connected to my emotions and to the truth at all times. Connected to the fact that every second is precious - everyone is in some kind of pain - every moment with Cody is a blessing - and any time wasted on worrying about my yard, "what people think", etc... is precious wasted time. I am grateful for that gift and hope to always remember it.
with love,
Shawna
Aug. 20
Today Cody has had 7 seizures so far and it is 4:20pm. That will probably put us at about 10-15 for the entire day. So once again, no improvement. It's getting to the point where I just sit by him as he has them, hold his hand, and cry - feeling so helpless. They take so darn long - 3-5 minutes of about 25 spasms. Every time has one a little tear trickles out of his eye. It is simply heart breaking.
This marathon is really getting to me. Knowing that around the corner will be yet another drug with more weeks waiting for it to work or not -- all the while watching him seize every day. And all the while watching him get a bit less steady and sturdy every day that goes by. I want to scream to the Dr's "DO SOMETHING NOW!" But there's nothing to be done except try med after med and wait the allotted weeks for them to work or not.
It was especially disheartening today - I tried to feed him level 3 baby food (has little chunks of pasta or veggies in it) and he used to gobble it up. Now one little piece of food that's not pureed makes him throw up - which he did. Swallowing is the very first thing to go when you're dealing with a neurological disorder. It's just so unfair. We NEED to get seizure control before he loses any more of his abilities...but God just seems to keep saying "no." I don't understand why and He and I have had many conversations along those lines.
He is such a special boy and is trying to hard to be tough through this ordeal. I just love him more and more every day. I'm grateful for the weekend when Daddy's home. It helps relieve some of the sadness to have another person at least witness what is happening within our home...to cry with me. My little guy seems to be disappearing before my eyes. Please, Lord, repair his brain.
With love,
Shawna
Aug. 23
Our visit with the neuro yesterday convinced us that the keto diet will be next on our agenda. Both this neuro and our former one believe that is the best plan of attack. That starts within a couple of weeks. For now, we have upped the dose of Vigabatrin one final time to give it the best chance we can. Right now he's had 9 clusters of seizures the past two days - which is down from 10-17 clusters over the last 11 days. So we are grateful for things having stabilizezd a bit again. He continues to cut new teeth (or "saw blades" as Kim Case aptly named them.) But he's less conjested which may be helping the seizures come down.
The neuro visit was somewhat depressing - as he pointed out that for seizures to persist for 3 months with no success from the best 3 drugs out there - it does not bode well for ever getting seizure control. Not great news to hear. I asked if there's ever been any kids who have had seizures this often but continued to develop - he said "no." BUT he doesn't know the Amazing Cody Graves...OR the power of prayer...OR the might of the God we serve!
Some good news - as the depakote continues to diminish in his system, Cody continues to wake up a bit more every day. Today I took him to a neighbors where there was another 8 month old and whereas 3 weeks ago Cody just laid on the floor while she crawled in circles around him...today he tried to crawl too...tried to sit up from a laying down position...yelped and played with her. THAT was nice to see. So my intuition that his plateau is from drugs may just be the case (please, God!) We get him evaluated by the neurodevelopmental dept. at the hospital tomorrow - both physically and cognitively so that will be interesting.
Other good news - I emailed Dr. Chugani in Detroit and begged for a quicker appt. and he agreed to try to squeeze us in earlier - so prayer for our trip to Detroit to come quickly would be great.
We are hanging in there - but it is getting awfully depressing watching him continue to have these seizures despite all the best drugs out there.
We bought a video monitor so we can watch Cody sleep and catch any seizures as he's waking up. It's a blessing and a curse. It sits on my desk in our bonus room - and while I pay bills, talk on the phone, write emails...I watch the monitor at all times out of the corner of my eye when he is sleeping. At his slightest flinch, I stop what I'm doing and run into his room - ready to rub his back to help him back to sleep - or hold his hand if he's seizing - or pick him up if he's crying cause his teeth hurt. Sometimes I laugh at myself because after I bound in there - I find he's only rolled over in his sleep - and my frenzied sprint is met with his calm, steady snoring.
Every time I run to Cody, I think the same thing: when the Lord sees me (His child) flinch...He also runs to me...just like I run to Cody at the slightest indication he might be in pain or afraid. If I race to Cody's aid...how much more quickly does the Lord, who is perfect and all loving, race to me in my time of need? Just as I sprint to hold Cody's hand, so much more the Lord bounds to me to hold mine. I forget to remember Him in this way sometimes - to remember that He is a parent too. And as much as I adore my son, it doesn't scratch the surface of how much God loves me, his child. It reminds me of the scripture:
"As a mother comforts her child, so will I comfort you" Isaiah 66:13.
With love,
Shawna
Aug. 24
Today was tough...We had Cody evaluated at the hospital for developmental progress. Just entering the rehab area was gut wrenching. I saw was kids in walkers, helmets, retarded children, kids with cerebral palsy, etc... There was one 5 year old boy with the world's tiniest little walker with stickers all over it - who was lumbering along in 2 leg braces. I have never seen an angel on earth, but one may have crossed my path today. I've never seen a smile so bright or a eyes that danced so. When he was done with his physical therapy his brothers and sisters ran up to him and lifted him up and carried him on their shoulders. He squealed. Mom gave him a high five. I cried so much I was embarrassed. Although I can't imagine the sheer pain of watching your child in such a vulnerable state...it truly is a glimpse into the divine watching this little guy give it all he's got just to walk across the room. Altho I pray Cody doesn't wind up in that state...seeing this little trooper made me think "maybe I could do that" - it was a privilege to watch this little guy's bravery and spirit as he hobbled along trying to be like the other kids.
Then it was Cody's turn. We had just upped his Vigab dose this morning so he was reeling from that and was much less alert and much more floppy than normal...plus he was two hours overdue for a nap and fell asleep right on their floor mat. (Those are my caveats...) Nevertheless, they evaluated him and said that they could still do a baseline study. According to them, his mental level is that of a 4 month old and his motor skills are that of a 6 month old. He turns 9 months old this Friday. I am still crying. I knew that he had regressed somewhat the last month and a half, but I had no idea that much. They said his score may go up a bit next time when he's more used to the drug level, but that it probably wouldn't be significant. He still seems so normal to me - but maybe that's because we've been quarantined for 3 months and I've lost my perspective. They say we need to do therapy every week to stimulate mentally and build up arm & leg strength. As I left the hospital I said out loud: "what do YOU know?"
They said some or all of it could be drug related - and mentally they definitely saw him go in and out of being completely engaged which is a sign it's at least partially drugs. Trouble is, he's not getting off drugs anytime soon unless the keto diet works.
So our prayer requests are: seizure control! And preferably on the keto diet so that drugs will be a thing of the past. Also, please pray for his development. We are devastated, heart broken, and depressed over this latest bit of news. They were so serious at the hospital, and even called in a social worker to help connect me to support groups for parents of children with disabilities - as well as "grief counseling." I wanted to scream, "wait a minute...don't you know he's going to be fine? I don't need to grieve! We're not done yet...not even close! He'll be better next week when he's more awake, you'll see!" I just can't imagine him as anything but perfect - and maybe I'm just not ready to go there yet.
So that's the latest - sorry not more good news to report. Thanks again for prayers and all the lovely emails you all send my way...they are keeping us afloat.
With love,
Shawna, Don & Cody
Aug. 25
What a crazy day. Dr. Chugani's nurse called and said he can see us Monday. So we scrambled, took work off for Don, I started making plans for flights and accomodations...only to hear from Dr. Chugani that she hadn't booked any of our diagnostic tests...she thought it was only a Dr. visit. So we will get in sooner than October which was the original plan, but they aborted the Monday visit. Darn it.
Today I put Cody in his high chair and worked on his motor skills for about an hour. He is transferring (which he didn't do for the developmental people) and he is grabbing with his first three fingers (thumb, index & middle) which he didn't do for the dev. people either. I think he's come out of his drug haze a bit. That was encouraging. He is still delayed, absolutely, but I think they are at least 1 month off in their evaluation that he is a "4 month old" mentally.
His seizures are up today and the neuro said it might get worse before it gets better as we wean him completely off the depakote which may not be fun. But thankfully his congestion and such is gone so he is sleeping a bit better - and his teething seems a bit less painful.
That's it for now - he is sleeping but stirring. He is just so cute I want to gobble him up. He is such a bubbly, vivacious baby despite all the fireworks in his brain. How did we get so lucky?
with love,
Shawna
Aug. 27
Cody's still hovering around 10-13 seizure clusters a day. I've put him in his high chair every day and stimulate his little brain...but he kind of just stares off into the distance. He's happy, just in his own world. Even when I bounce a little red rubber ball right in front of his face - he doesn't even look it's way. I feel like he's disappearing. This is just so sad. How does a mother watch her child regress? Will he sometime not be able to reach out for me? Will the expressions that are meant just for me - disappear? Often he'll look at me and raise an eyebrow...just before reaching up to pull my hair. I pray that the things about him that are so specific to him won't get lost.
And God continues to say no. There are times that I put both my hands on Cody's little head and pray for him - begging God to take the seizures away - and right under my fingers I feel his head tilt -
and I sense him quiver - and I look down to see his eyes rolling back and a tear forming as he embarks on yet another 5 minute seizure.
"Are you just trying to torture me," I scream at God? It's so discouraging when the very thing I'm praying against...happens beneath my hands.
Yet we press on. When the seizure is over, we get up and play...we have a bottle...we move forward. I guess that is the evidence that God is in this. I don't stay curled up in the fetal position -- I stand up and pick up my baby and put one foot in front of another. God and only God is giving me the strength to do so - so although He isn't answering "yes" to my prayers - He is with us amidst the pain.
Sometimes I fear I will die in the night from the sheer pain of it all - yet every morning I awaken - my heart still beating and my lungs still breathing. Evidence again, that God exists.
Love, Shawna
Aug. 30
Today was a good day all things considered. Cody still had his regular 10 seizures...but during his "brain stimulation" time in his high chair - he was especially engaged and curious. He grabbed everything I put in front of him - was curious about the red ball, the race car - and even transferred stuff from hand to hand. Whereas the last few times I've tried this he just stares at the wall or the ceiling in a daze...not even acknowledging anything on the tray (almost autistic-like.)
Also, he's begun to make a consonant sound! "ah-gooooo" has been uttered about 8 times in the last 3 days! The development people made a very big deal out of the fact that Cody was only "shrieking" as they called it (I preferred to call it a "joyful noise.") So this is a NEW thing he's doing which is promising. Needless to say, Don and I walk around saying "ah goo" to each other all day to try to get Cody to follow suit! We sound like idiots but we don't care.
Cody's also drinking water out of a little cup and chewing on a teething biscuit. Those are both new things.
We saw the neurologist in charge of the keto diet today and will be starting as soon as he's completely weaned off the Vigabatrin (probably 3 weeks from now.) He said he's seen children like Cody blossom on the diet - and said it is especially effective for kids who didn't respond to conventional meds at all (that's Cody!)
So that's our news for now - wish I could report even greater progress but I'm grateful for the small things like "ah-goo" and teething biscuits.
With love,
Shawna
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