Oct. 3

A rough weekend. Cody is still having these crazy staring spells that are very disarming. His seizures are still severe and lingering at about 10 a day. I fear that soon, our dismal days will begin to drive people away from us. I feel like Eeyore...always down and sad. I try to put on the cheerful face - and often it's sincere. But I realize that people can only take so much doom and gloom -- and they kind of start to avoid you. Not that anyone is doing this...it's just my fear. After 4 months of being in crisis, it gets pretty old to be around. For those of you who have stuck in there, you are saints. I admit I'm not so much fun to be around - my poor husband. I just want this all to end. Every time I give Cody a bottle full of medicine, I secretly apologize to him in my mind. We have no idea what these medicines will do to him over time - none of them are meant for babies. And the side effects are so horrible. Tonight he cried all night - and had terrible pain and constipation. No doubt another medicine side effect. It seems every single day he has a new issue to work out. Yesterday it was the zombie staring, today it was the crying and pain. who knows what it will be tomorrow. I am weary beyond imagining. I can't believe this is my life. More, I can't believe it's Cody's life. Is there any other way to help him - than to give him these toxic medicines???? We pray the keto diet will prove successful.

So there you go - brutal honesty once again! Now I get to crawl into bed with my little angel...and snuggle up next to his warm little form. His breathing is labored from the medicine - but every breath he takes is a gift to me. Every time he rolls over I am grateful he's strong enough to do so. He can sit up in bed now - from a laying position - and he is so proud of himself. Sometimes I wake up at night and he's sitting up next to me with the funniest look on his face, like "look what I did!" Then he tips over and falls right back to sleep. He's such a snuggler - such a gift. We parents know, don't we, what it's like to see heaven here on earth! Just stare in your child's eyes! You know what I mean.

with love, Shawna

Oct. 4 

Finally, some good news. Cody went to physical therapy today and the therapist couldn't believe her eyes! She said, "Shawna, I can't believe you didn't call me this week to tell me he was doing this!" She was referring to cody being able to sit upright - and get there from a laying position. This is brand new. It's been a real concern that he hasn't been able to sit up - and that's why they deemed him so delayed physically. But now he pops up to a sitting position solid as a rock - and did it over and over for her! I was thrilled. She said she's never seen a child with such seizures continue to develop like he is. Go, Cody! Go, Cody!

Another fun bit of news is that I was eating a giant red crunchy apple today and he kept trying to get at it. So I held it up to him and he started gnawing on it and continued to do so till it was a big ball of drool! This is a kid who choked on anything but pureed baby food less than a month ago. (the inability to swallow is part of developmental delay and was heartbreaking). Not only is he chewing food now and swallowing it - he's reaching for it! Last night he had a bite of a tuna sandwich and this morning a bit of a breakfast bar. Brand new stuff. We're so grateful for progress - and in awe of what he's doing with all the seizures still cursing him!

So it was a great day. Still lots of seizures today - but so much else to be grateful they are overshadowed. We're focusing on what's good, not what's bad. Yippee!

love, Shawna

Oct. 8

We're off to Detroit tomorrow (Sun) a.m. to see the specialist & have Cody's tests! EVERYTHING that could've gone wrong reg. this trip HAS gone wrong. It's a miracle we're going. From the hospital forgetting to schedule his PET scan, to our flight being cancelled, to our accommodations falling through, to our insurance changing at the last minute - I don't think I've sat down for 2 weeks! On top of it all, Cody has a viral infection which makes the sedation a bit riskier & makes him overall more miserable for travel. Honestly, you couldn't believe all the fires I've put out. All I can think is that the devil REALLY doesn't want us on this trip - which means maybe something exciting is in store?!? I've never doubted that this trip is in God's plan for us.

Mon. is the 30 hour video EEG (yep - 29 more electrodes, glue gun, & air compressor on Cody's little head! I'm still picking the glue out from his EEG in July!) Please pray for the "gluing" process - it's painful and scary for him & takes 2 hours to boot. And for his ability to endure the 30 hours without pulling the electrodes out and/or going crazy. He's constant motion & I can't imagine him confined to his crib for so long.

Tues. is the PET scan when he'll be sedated. Please pray for safety - the last time he was sedated he required oxygen immediately, a chin guard, & an oral airway because he had trouble breathing. One of his "other' issues is laryngomalasia, an immature larynx, making sedation tough. He'll have an anesthesiologist to work one on one with him which they only do on very rare occasions. Usually they knock babies out with a sip of choral hydrate & that's it. But Cody has reflux, laryngomalasia & now a viral infection so he'll be a high risk case.

Wed. we meet with Dr. Chugani to discuss results & whether they found a focal point/brain lesion which would make Cody a surgical candidate. If not, we'll come back home & start the keto diet immediately.

Finally, Cody's now able to sit up from a laying down position which bumped him up to a 6-7 month old developmentally acc. to his therapist (he's now 10 mos. old) which we're thrilled about. He's also got a new favorite food - apples! I peel a whole one and he gnaws circles around it. This is a milestone for him because weeks ago he could only swallow pureed baby food and formula. So he continues to develop which continues to amaze the neurologists! However, he's still having 8-10 seizures a day which are more severe than ever & quite alarming to watch. We appreciate your prayers for travel safety, low stress for Cody, and for our frazzled nerves as we continue this odyssey of trying to heal our son! We'll give you a report when we return...until then...OFF WE GO!

love,
Shawna, Don and Cody

Oct. 13

(warning, this is long but the most important details are on top if you want to skip the rest!)

Well, we are back - exhausted, sad, happy, and mostly glad the trip is over! Cody MAY be a surgical candidate - in 6 months we will do this all over again to see if all the abnormalities have migrated to the left side of his brain as they seem to be doing now.

We will not be starting the keto diet, but will begin zonegran, a new drug which Dr. Chugani says has a better chance of working than the diet and he feels we need to be very aggressive.

Dr. Chugani said his PET scan showed that Cody has "bi-lateral temporal lobe abnormalities" with an autistic phenotype. That means that both sides of his brain are unable to function in places - altho the left side is much much worse than the right - hence the possibility of surgery on the left side if this asymmetry continues. He would remove the entire portion of the left side of Cody's brain that isn't functioning. Surgery isn't probable - but when he check Cody in 6 months, if he's even more left-sided in his abnormality, surgery is possible.

All children with his particular phenotype become autistic. HOWEVER, one look at Cody and Dr. C. said that he's very confused because in 500 cases of infantile spasms, he's NEVER seen a child like Cody. If Cody were to become autistic, Chugani says he should be showing dramatic signs already - but in his words, "Cody is lert, engaged, aware of his surroundings, and there is not one sign that he is fitting the autistic phenotype." In short, he is stumped. He thought for awhile and said, "I have seen this in ONE other child in my career, an Irish kid, who was just like Cody. Maybe this is a whole new syndrome we're dealing with." That was great news to hear because Dr. Chugani, the world's expert in infantile spasms, is very intrigued by Cody and is going to do some research on whether Cody may be a one of a kind case that doesn't fit any prior I.S. "type." He was dumbfounded that Cody is doing so well despite 4 months of seizures. He did some developmental tests and said Cody will walk (I guess I never questioned that...but maybe should have) because he exhibits the "parachute" reflex (when taken from a airborne position to the floor, Cody puts out both arms & legs to brace himself which is something only seen in kids who can walk.) He is less optimistic about speech - but added, "hey - WHO KNOWS - this child is breaking all the rules." He also took some blood to test Cody for "ARX" which is a genetic abnormality - but comes with 100% retardation rate - so we are PRAYING that test comes back negative.

Cody was a dream on the flights Sunday. One flight attendant said he was the best child she's ever flown with! The 24 EEG Monday was harrowing. They bundled him and taped him to a stretcher for 2 hours while applying electrodes and Cody screamed bloody murder the whole time. Don and I were climbing the walls. It seemed so barbaric - but they needed to keep him from pulling at the electrodes. Once again, I thought "no parent should have to see their child go through this." But we made it through and spent the next 24 hours with Cody confined to his hospital bed which was another challenge since he's trying to crawl and sit up all the time! He was on about a 2 foot tether with the electrodes so we were on constant watch. That first night, Cody did NOT sleep. Don and I were up ALL night - cursing our lives and our plight - begging God for Cody to just GET SOME SLEEP! If he had to endure all of this, couldn't God just let him sleep through part of it? Sleep just never happened for our little guy - and we all were frazzled and in horrible moods the next morning.

The next morning was the PET scan - which had taken me 2 months of organizing with the hospital. He is very high risk for sedation because he has laryngomalasia (immature larynx) and at his MRI in the past had to have immediate oxygen and emergency measures to keep him breathing. So there was an anesthesia team of 3 people ready to sedate him and I was panicked. They prepared to inject him and knock him out - but he fell asleep. So Don and I said, "would you consider seeing if he'd sleep through the PET scan instead of anesthetizing him?" They were highly skeptical - and with lots of other kids waiting - didn't want to wait to see if Cody would sleep - only to have to start all over again if he woke up. But they agreed and we prayed and prayed. Cody was sent into the little tube where the red lights made grids and danced on his little head - and for 45 minutes - he slept! He was so tuckered out from his sleepless night before! As we left, I asked the anesthesiologist how often children have slept through PET scans, avoiding sedation, and the guy said "to be honest, I've never seen it happen." A gift from the Lord from what "seemed" like an unfair night of no sleep the night before! I hope I'm slower to raise my fist when things don't seem to be going my way - knowing that God may be preparing the way for something I cannot see!

So that's our news. How do I feel? Depressed but hopeful. Despite a trip with many blessings, I was hoping for some magic news that would change our lives. Instead, we got more "I'm stumped" - and statements like "I'm not very optimistic about speech." We hope Cody continues to beat the odds - and count on it. But I will be looking over my shoulder every day waiting for Cody's condition to catch up with him. It's more of the unknown - no one able to tell us what will become of him because they've never seen anyone like him. I was just SO looking forward to taking him off meds and starting the keto diet. But Dr. C. feels that zonegran (a new drug that is now one of the top treatments for I.S.) needs to be tried. I am disappointed and HATE more drugs, but this Dr. was so impressive, I would fly to Mars on the next shuttle if he said it would help Cody. He's seen over 500 I.S. patients, compared to our local neuro's who average 5 new cases a year. Dr. C. gets the worst of the worst cases from around the world - they go to see him when their local neuro's have no more answers. There was a family from the Netherlands having the same things as Cody had done - who were paying completely out of pocket (probably $20,000 in just hospital bills.) People fly from all over the world to see Dr. C...and his knowledge about I.S. makes your jaw drop. He listed obscure infant epileptic syndromes that our local neuro's have never heard of. He instantly recalled the Irish kid who was just like Cody and clued in that this may be a new syndrome. So although I am dying to get Cody off drugs, I trust this Dr. and believe he really knows best. So we will try this drug for now. And pray pray pray for seizure control. If we get it, and IF Cody continues to develop, we stand a chance of avoiding autism and maybe, just maybe, having a child who can speak, learn, ride a bike and maybe even get married himself and have a child of his own. Only then will he know the depth and height of a parent's love for their child. A love that can move mountains, fill oceans, and soar above the clouds. As I watch Cody soar above his diagnosis - and fly above all that is supposed to tether him to a horrible prognosis - I am aware that all things are possible. If I had one ounce of the strength, courage and innocence I see in my child, I would be thrilled. God gave us a miracle man - who continues to defy the odds - and who will hopefully demonstrate to the medical community that a diagnosis and a prognosis are NOTHING when God, the Great Physician, is in charge. Perhaps the "new syndrome" that Dr. Chugani refers to is a syndrome called "the answered prayers of believers all over the world - who have united to lift up a very special little boy."

Would you continue to do so - now more than ever?

With oceans of love, shawna, don and Cody

Oct. 17

Cody has started on zonegran and a couple of days ago only had 4 seizures! Yesterday it was back up to 8. But we are always hopeful at the start of a new drug. The downside is that he can't sleep. He was up ALL day yesterday and didn't fall asleep until 11pm last night. Please pray for sleep for him (and us.) Sleep is still the most pressing need in our lives (other than Cody becoming seizure free!)

He's in a pretty good mood and loved having daddy home all weekend. I'm working on "mama" and teaching him how to clap! I got a new email from Dr. Chugani that said this:

"It was the bilateral hypometabolism in the temporal lobe (both sides) that clued me in as to some 'autisitc features'. Not necessarily full blown autism. If he is not autistic now, it is unlikely that he will become autistic. With speech, it is more difficult to predict. Certainly, if seizures do get controlled, we have a better chance at speech. I would push the speech therapy.
Harry Chugani"

Obviously I've been in denial - or have been uninformed because speech issues never even entered my mind. Cody babbles all the time and is very verbal - altho he's not making many consonant sounds or putting any words together. As each month ticks by, I'm aware of more and more milestones he isn't reaching...but we are grateful for the ones he is attaining. Please pray for his ability to talk - I will be heartbroken to never be able to have a conversation with my little boy!

As for autistic tendancies, I do notice a bit of hand flapping as they call it. He makes a fist with his hand and hits it on his other hand a few times a day. He also can stare at a ceiling fan for a half hour at a time. Both things could be signs of some autistic characteristics. He makes great eye contact, tho and is engaged most of the time. He's doing this "staring" thing now, tho, which we fear is a new type of seizure activity. He can lay in bed and stare at the wall for an hour straight - not moving - almost in a trance. I am going to talk to the Dr's about this. He's done this all along, but not to this level.

So we just continue to watch, wait and see. Seizures are simply a symptom of the problem - that his brain is functioning abnormally. That can affect speech, can lead to autism, can affect walking & development...and much more. So my focus has broadened, sadly, and I'm much more aware of the global issues we are facing. Before I thought if I just got the seizures under control we'd be home free - but now I realize that his little brain could still wreak havoc in other areas of his life. All the more reason to pray for all aspects of Cody's development - including seizure control. the good news is that IF we can eliminate seizures, there's a good chance his EEG would normalize and that would bode well for his brain allowing other areas to mature (like speech, etc.)

SUCH a crazy journey. thank you for joining us in it.

with love,
Shawna

Oct. 19

Tough day today. We upped the dose of zonegran and Cody's been basically staring like a zombie all day long. Good news is he's so doped up he's only had 3 seizures so far (it's 4p) and usually by now he's had at least 5 or 6. He had physical therapy at the hospital today and needless to say, it didn't go well.

I've had more coorespondence with Dr. Chugani and am understanding more of what we're dealing with. Even if/when we get these seizures under control, Cody will probably be facing many more setbacks developmentally due to his brain abnormalities. No one can predict for certain what he faces, but the more I talk to people, the more I am aware that his prognosis (at least unless God intervenes) is one of probable delay - difficulty with speech and walking - perhaps more. It's been a teary day as I begin to face these facts. But mind you, I know I serve an amazing, HUGE God who could reverse Cody's brain problems in an instant - and I cling to that hope and pray for it every minute of every day. It's just so hard.

I'm thinking about flying to Detroit alone - just to have another session with Dr. Chugani to get more insights into this. There are so many things I don't have answers to: What causes the brain to metabolize poorly? Is it reversable? If the seizures stop, does that help the brain to normalize? How did Cody develop perfectly up to 6 months of age with such abnormalities in his brain? What does it mean that his EEG is abnormal at all times? Are these staring spells seizures of some kind? etc etc etc. I could list 20 more questions...but ultimately I keep reminding myself that no matter the answers, my daily journey with Cody is the same. Watch him, love him, pray for him, and wait. All the answers in the world won't change that formula. I just crave more knowledge about this dreaded situation.

I hate to see him so zoned out on meds - but I have to remember that the seizures are doing far more damage to him than these medicines are. Please, Lord, heal our little one.

With love, Shawna

Oct. 22

Two more days of zombie-baby. I got so worried I called the neurologist on-call at the hospital and he said Cody may have drug toxicity so we took his zonegran level down. He was up until 2am last night - just staring straight ahead as he lay in bed beside me. It was horrible. Today he snapped out of it a bit - and hopefully tomorrow will be better. These meds are such a guessing game - the Dr's want to be aggressive, but every child responds differently to the med itself, and also to the way the med interacts with the other ones he's on. Don went on a 3 day business trip so it was good to get daddy back today. My awesome friend Kim and her daughter came down and gave me a hand - did our laundry - cooked meals - cleaned - listened while I cried - helped me sort out what to do about Cody's latest issues - and basically kept me sane!

Please pray that this zonegran will work for Cody - and that we can find a way to manage it that doesn't make him so spacey.

with love,
Shawna

Oct. 28

Cody is doing MUCH better on the zonegran. Yesterday he was happy, giggly and had a fantastic physical therapy session. His P.T. said it was HUGE that he was making such great eye contact and that she'd never seen him focus on one thing for so long (he was particularly fascinated with a towering brightly colored...ball thing.)

He is still having lots of seizures, but they seem to be milder on the whole...and perhaps they've gone from 10 a day to 8 a day. Sometimes instead of a full blown 5 minute cluster, we just see a single shoulder shrug - so I'm not sure whether to count those or not.

He turned 11 months old on the 26th of Oct. so we are counting down to his 1 year birthday! Please pray for this zonegran to continue to bring his seizure number down - and for him to continue to tolerate it.

with thanks and love,
Shawna

Oct. 30

Wow - just when he was his most alert and doing great - today he woke up a zombie again. Curse these drugs. We were thrilled because the last couple of days his seizures had gone down to 6 - a new all time low - then last night he woke up at 11p and had 3 in a row bringing yesterday's total up to 9 and today at 11am he's already had 4. It seems like it's so futile to get our hopes up. The day we think "maybe THIS is the drug...maybe there's a light at the end of this tunnel"...he instantly takes a turn for the worse. So tempting to just keep our expectations low so as not to be leveled when the seizures spike inevitably. I just went into check on his during his nap and wouldn't you know it, I caught him having a seizure in his sleep. Even his sleep time isn't peaceful. His little body jerks and wakes him up - it is so painful to watch him go through this. I keep thinking, "Lord, what are You WAITING for?" My hardest days (as you can tell) are those when he is a zombie - and I see no trace of his little personality. Please pray that we could - for once - have our hopes met with the reality of true seizure control.

With love,
Shawna