Sept. 1

Hello there, Well we had our 1st physical therapy appt. (since the dreaded evaluation last week that deemed him a "4 month old" vs his true age of 9 months) and after 10 minutes with Cody the therapist said "this is a new baby!" I was so excited. She said he's engaged, laughing with her, stronger legs, sitting better...she said he's reaching for things more specifically. So that was great news. He's still delayed, there's no doubt. But not to the degree they thought. Obviously the meds have a lot to do with it - which is good news. Especially since we're weaning him off vigabatrin beginning tonight. He's completely off depakote and has gained a lot of skills back in the last week that he's been off. Yesterday he used a sippy cup for the first time! And he's said "ah-goooo" a few times too which is new (using consonants.) He's also chewing on teething biscuits and is more interested in food in general.

I'm very nervous about the vigabatrin wean - mostly because both neuro's suggest not using any other drug to "bridge" him into the keto diet. He has to be off vigab. for 2 weeks before the diet which means 2 weeks with no anti-seizure drugs at all. They seem to think he'll be fine but I spend my life second guessing them! So prayer for him to remain stable and not have any crazy stuff happen during this time (grand mals, etc) would be great.

We're on for our Oct. 12th appt. with Dr. Chugani in Detroit and I'm working on plane reservations and all. And we're excited about the keto diet. The Dr. in charge (Dr. Schimschock) will be our new neuro for the duration of the diet (he says you can see results in 2-6 months...ugh) and he says he's seen babies bloom on this diet that haven't responded to any other therapies. Please please pray that this diet works for Cody. I would LOVE to have him off all meds and just on the diet. It's basically the Atkins for babies and supposedly works in 66% of cases where nothing else does. Please, God...please!!! I'm SO tired of this treadmill of meds, side effects and seizures! Next week we have a Dr. or hospital appt. every day of the week - so I'd love prayer for simple endurance for me.

Poor Cody - he's still having 10-12 seizures a day, and now that his 5 teeth have come in up top in front...I've noticed his little fingers jammed into the back of his mouth. And yes, now he's getting all his upper teeth on BOTH SIDES. He is a trooper but a lot of the time it's painful for him and makes his seizures go crazy. I just can't believe he's getting ALL his teeth at one time. Ouch.

That's the news from our little acre. We're so disappointed that yet another drug has proven ineffective. We've now gone through the top 3 meds for infantile spasms. That doesn't bode well. But we are still hopeful and we're still enjoying every minute with our little hero. Our love for him grows with each passing minute.

With love and thanks, Shawna

Sept. 3

So far Cody is handling the Vigabatrin wean okay - we started him on a lower dose on Thursday and he's not spiked in seizures or anything. If anything, as the drugs continue to clear his system, he's happier, more engaged, stronger, etc. I'm still nervous to take him off Vigab and leave him with nothing until the keto diet starts - but 3 neurologists seemed to think it was okay. He's still having 10 clusters a day, darn it. But yesterday he grabbed the spoon from my hand and crammed it into his mouth which is new! And he seems less wobbly on his legs every day too. Terri Festa came down for 3 days so Don and I got 2 full night's sleep going into the weekend - we feel like new people! It'll be interesting to see how Cody sleeps after the drugs are out of his system. Drugs - enemy or friend? That is the question!

I am spending the day organizing hospital and Dr. bills and feeling very lucky we have insurance! Even at that, the cost is exorbitant. But Cody is worth every penny! Then it's grocery shopping, diaper run, bank deposits, paying bills, and cleaning! Yikes. Because it's a 4 day weekend I have big plans to try to get lots done and feel somewhat organized. We'll see if it works!

That's it for now - please pray for Cody to do well off these meds - with no scary complications! Thank you so very much!!

Shawna

Sept. 4

Some disappointing news today - Dr. Chugani says we have to wait to start the keto diet until after the PET scan is done on Oct. 12th in Detroit. The diet affects glucose levels which the scan monitors. So we are left with a huge dilemma - what to do between now and Oct. 12th. I will make yet another valiant effort to reach my neurologist tomorrow (which I'm sure will be met with "the first opening is in December".) Ugh. I suppose they will want to put him on another drug for the next month and a half which is a huge bummer. He's so bright and vivacious these days - full of personality and squeals - giggles and expressions. I hate the thought of drugging him up yet again but a month and a half is a long time to have him dangle without one. I tried to get the appt. moved up with Chugani but they said there are hundreds of moms "just like me" waiting to get in and this was the best they could do.

This was tough news. I hope we find the right thing to do until the diet can start. And we are excited that our trip to Detroit is near - and that the country's leading expert in infantile spasms will take a good long look at Cody's brain and seizures and give his take on things.

We had a good weekend - Don took Cody much of the time so I could get caught up on errands, bills, etc. Don got a little golf in today too. Hope you all had a happy holiday - back to the grindstone! Cody goes to physical therapy again tomorrow - where I hope he knocks their socks off! All the therapists each claim him as their boyfriend...he is quite popular.

Today he took his first bites of "3" baby food - "pasta and chicken." This was the first time in months he was able to swallow the pasta without throwing up - another sign that the drugs were impairing his abilities. He can even swallow better now! We're grateful for so much.

with love,
Shawna

Sept. 7

Wow - yesterday Cody cried ALL day because of teething. I tried everything - motrin, naturopathic tablets, frozen rags, teething rings...to no avail. It was so frustrating, sad, and crazy!!!!!! He was up ALL night too. Please pray that his teething pain resolves soon - he is going through so much!

We had our 2nd round of physical therapy yesterday and he was crying so much it was pretty much a bust. Although she did say he seemed even stronger than last week.

We are praying about whether to leave him off vigab and have no meds - or use Keppra - a fast acting anti seizure drug. It will all depend on how he does with nothing.

can't write much more cause I need to tend to him - but thank you for praying for his little teeth.

with love,
Shawna

Sept. 8

Poor Cody is still teething like a madman...waking up every hour all night. But the good news is that every day that goes by as we wean these drugs, he is more awake, alive and progressing. Yesterday we had him evaluated again and they said he was up to a 6-7 month old. That was music to my ears!

But since we don't start the keto diet for a month, both of the neurologists I met with didn't feel comfortable with Cody on nothing - especially with traveling coming up. Any new things like airplanes, hotels, procedures...can trigger seizures so they want to make sure he doesn't have an attack out of state and are suggesting we keep him on his current dose of Vigabatrin and add one more named Keppra to try to gain more seizure control during this month. He's now up to 13 seizures a day because of teething and that's just too many. This trip is making me crazy because we wanted to start the keto diet and get him off of drugs so badly, but both my local neuros say that the trip is a good idea and will provide invaluable information about whether Cody's problems are caused by a brain lesion - which would mean he is a surgical candidate. There is a minute chance it's a lesion...but worth investigating. As I've said before, it gets crazy when your "best" hope is brain surgery!!

But hope we do! Cody just woke up and had another 5 minute seizure so I must go for now. Thanks for reading and praying!!

With love,
Shawna

Sept. 10

We got some bummer news that Cody can't start the keto diet until after the PET scan Oct. 12th in Detroit. The diet messes up the scan results so now we have had to decide what to do during this next month. The Vigabatrin wean is not going well - he's still having 10-13 seizures a day, much more severe (eye rolls, crying, sweating, bigger jerks.) Plus traveling can stress a baby out and lower their seizure threshold. So we will take the Vigab dose back up for stabilization and use this time to try a new drug as well. Keppra has very little side effects (so they say!) Then once we return from Detroit we'll start the keto diet. Reports say the diet is especially helpful with infantile spasms.

Reg. the PET scan: there's a super small chance Cody might have a brain lesion or focal point that can be fixed surgically - thus removing the need for meds forever. His EEG's don't indicate a focal point so it's highly doubtful - but our local neuros are supportive of this trip because lesions can be evasive. If not, we'll at least know we left no stone unturned - and we'll get Chugani's input on Cody's options & prognosis.

Now that he's completely off depakote he continues to blossom and last visit, the therapists bumped him up to a 6 or 7 month old physically and mentally (he's 9 mos. old.) Once we start the diet and hopefully get drug free, we may get a glimpse at who Cody REALLY is for the first time in months!

Teething continues to plague Cody (and us!) and sleep is nearly non-existent. But we made it through our week of 5 Dr. appts. and are looking at 4 more appts. this coming week! On a daily basis, when he's not seizing, he's still quite happy and giggly. For that, I am so grateful.

Prayer requests: That Cody will get seizure control!!!!!! Till then, that his seizures will be less severe and not damage his little brain. For ease in planning and executing this trip to Detroit - from insurance issues, hospital scheduling, lodging, etc. And for Cody to handle the traveling well. Prayer for wisdom for Dr. Chugani to find something new to help us. For Cody's horrible teething - they haven't even broken through yet! For our marriage to be guarded and protected - we are doing great but the enemy would love to divide Don and I, I'm sure! For SLEEP. And for hope. Every time a new drug fails, I am crushed anew. There are some very scary disorders that are preceded by uncontrolled infantile spasms (Lennox-Gastaut, for example, which has a horrific prognosis.) As each med is tried and failed, it takes a piece of my hope away with it. It is a terrible sign that nothing has even touched his seizures yet. We are running out of options. "They" say that if three anti-seizure meds have failed, your chance of ever getting seizure control is 5-10%. That scares me to death.

I've been studying Abraham and Isaac lately - when Abraham was asked by the Lord to sacrifice Isaac, his beloved only son. Abraham didn't have to ultimately, but I am moved by the footnotes in my Bible: "God did not want Isaac to die, but he wanted Abraham to relinquish Isaac in his heart." WOW. I often think, "there must be something I can do to spare my son, to spare my own heart this crushing grief!" And I realize that it's my own heart's desires I am being asked to sacrifice on the altar. Am I willing to lay my "Isaac" down and relinquish my expectations - my "right" to my dream for a "normal" life for my son? Will I honor God by continuing to love and trust Him in these utterly unthinkable circumstances?

In the book, "When I Lay My Isaac Down" Carol Kent says, "the key is to fully engage our hearts in understanding that God loves ME more than I love my Isaac." Not only that, God loves my son even MORE than I do. What a radical thought - and one I can't even wrap my brain around because my love for Cody would overflow all the oceans. But I keep reminding myself that my love for my child doesn't even scratch the surface of God's love for him.

Carol Kent continues, "true heart sacrifice involves letting go of our control over our "Isaac" and resting in the outcome, even if in this lifetime we are not allowed to understand the reason behind the pain. The high value of surrendering our Isaac is what makes the sacrifice so demanding, because we don't know ahead of time if we'll get our Isaac back! He lets me decide if I will make laying my Isaac on the altar an act of worship, where I lift up my heart in total trust in Him and release my grip on the object of my sacrifice."

Relinquishing my "right" to my dream for Cody's future is the most painful thing I will ever do. It goes against the grain of human self-reliance. Yet even if God heals Cody miraculously, the surrender still needs to happen. Cody's future is not mine to control - or to lay claim to. Every breath he takes is a gift from the Lord. Every beat of his heart is God's choosing. He belongs to God - and somehow in my surrendering him back to the Lord, there is a joy and release that transcends my heartache.

Thank you for taking the time to read my long winded revelations. I know you too probably have your "Isaac" to contend with - and I join you in the painful process. I pray for you steadily - and look forward to the day we can all look back on our current trials and see His fingerprints on them...and us.

Till then, thanks for your prayers and love,
Shawna

Sept. 11

Cody had a horrible day - he had 3 five minute seizures within the course of a half hour. Then a few hours later he did the same thing. We were ready to give him the valium but decided to wait to see if he could recover and he seemed to. But it was a really weird day for him altogether...lots of fussing which isn't like him...he woke up with night terrors a bit ago...lots of staring spells. I don't know if it's teething, the new drug, or a combo. Please pray for a better day for him tomorrow.

We are planning our trip to detroit and getting overwhelmed at the thought of lugging a stroller, car seat, diapers, formula, etc etc with us across the country. The plane ride is 4.5 hours going and 6 hours coming back! That won't be pretty either. But as usual, I was humbled by a response I got from another mom who I asked for some travel tips from:

Girl, if I can travel with a ventilator dependant child on an airplane from TN to CA, it should be a piece of cake for you!! I had to take a 27 lbs battery, oxygen tank, suction machine, ventilator, diaper bag, emergency supplies in a rolling suitcase and we made it with no problems! Love, Nikki

The sad truth is - there's always someone worse off than you, isn't there! Her email reminded me to be grateful we aren't in more dire straits - like other moms of babies who have i.s. But it also gave me a glimpse into what i pray is not our future. Scary and humbling.

with love,
Shawna

Sept. 15

Cody is still having seizures too close together - twice we've almost had to give him a valium suppository which basically makes unconscious. This is probably due to us weaning him off the vigabatrin - so we are raising the dose of that to maximum once again. We've added Keppra but haven't seen a change yet. Our current goal is just to get him stabalized for our trip on Oct. 9th to Detroit for the PET scan. His seizures are also still more severe than normal.

But we're thrilled that Miracle Flights is going to fly us to Detroit! They are a volunteer organization who flys sick children across the country for treatment. We'll be staying at Ronald McDonald house in Detroit too - which is right on campus.

Other than that, Cody's physical therapy appt. this week was awesome! They put him in an orthopedic walker so he could walk up and down the halls all by himself! He was the toast of the town. He thought he was such a big shot. For some reason, all he wants to do is stand and walk. He can't sit very well and that's what we want him to work on...but he won't stay sitting...he arches his back and goes stiff until he is put in a standing position. Too funny. They said despite the increase in meds again, he is still doing well developmentally and continues to make strides.

That's our news today - hope you are all well!

with love,
Shawna

Sept. 17

We are still struggling with more intense seizures that are coming closer together. Please pray for these to stop. We've had the diastat in our hand 3 times in the last 3 days (it's basically valium)...but he's stopped seizing just before we were going to use it. The neuro doesn't know if it's the new drug causing it, or if it's just a change, or what. We don't know whether to adjust his drugs or ride it out. Sometimes funky things happen when trying a new drug that will go away. We just don't know. So many huge decisions and so little wisdom to make them. We are definitely in over our heads!

We were looking forward to a morning and afterron respite - with a group called "Caring connections" who offered to take Cody for awhile so don and I could spend some alone time. But we had to cancel because Cody is so fragile right now. He's having 40+ spasms per seizure cluster - so he's jerking continually when they happen. It is horrifying to watch. Then other times, his cluster will consist of just two or three jerks and it's over. So crazy and impossible to understand.

Glad the weekend's here - Don took cody last night so I finally got a full night's sleep. We're taking Cody to a company picnic of Don's today and hope he will be okay. It's so sad to introduce him to people when he's so spacy and avoids eye contact (result of high meds). I want everyone to know the sweet giggly verbose little guy who's "in there"...but who seems to be in his own little world much of the time. Please continue to pray fervently. This is a hard time.

With love,
Shawna

Sept. 20

Gosh - I think I've hit a new low. The last few days Cody's seizures have been more violent than ever before. And he's had these strange crying jags. Night before last I got absolutely no sleep (had Cody by myself because Don had taken him overnight all weekend). So last night I slept in the spare room hoping to get a full night's sleep and my allergies were so bad I could barely sleep a wink. The one night I get to myself and it's spoiled by a stuffy runny nose. I need sleep so desperately. I think the enemy is on all out, full boar attack on our family.

This morning Don brought Cody in to me at 6am and said he'd had no seizure through the night which is rare. My heart skipped a beat. "Could this be the day he's free? Lord, let it be so!" I was so excited to get out of bed...we played and giggled...I watched the clock as the minutes ticked by. 7am and still no seizure. "Maybe this is the end." I dared to even say it out loud. Then one minute after seven...the most severe seizure he's ever had...eyes rolled back in his head and huge jerks to the left...tears rolling down his cheeks and out of breath. My heart sank. Then not a half hour later another one. And another one after that. There just seems no end in sight. And I feel desperately at the end of my ability to cope. One more new drug that isn't working. Three more weeks of just bearing through these seizures until we go to Detroit and start the keto diet. And if that fails...we will be pretty much out of things to try.

This is just a sad, bad day...and I covet your prayers. The greatest toll is watching him with these new, more dramatic seizures. I just can't bear to witness it 10 times a day - for five minutes a crack. I fear he'll pull a muscle or go into a full grand mal. Please pray for endurance for me and Cody today. My supply is low. He's taking his first nap of the day so I will open my Bible and have my cup of coffee and try to re-group. thanks for loving us...and for praying.

with love,
Shawna

Sept. 21

Hi there - Today we had to give Cody the dreaded "rescue" med, a suppository of Valium to quell his seizures. He'd had 10 seizures by 3pm and 3 of them within 1 hour...so we had no recourse. Obviously the new anti-seizure med isn't working. Please pray for relief for Cody - these seizures have gotten more violent involving stronger head & body jerks, gasping, crying, eyes rolling, etc. I have an appt. with his neuro in the morning to try to come up with a new plan.

Also, our trip to Detroit is being threatened by the hospital's mistake. They forgot to list Cody as high risk for sedation for the PET scan so they didn't schedule a one on one anesthesiologist and wanted us to re-schedule our trip. Obviously we don't want to and have made all the arrangements to go...so that's just not an option. Luckily they admit it's their mistake so I'm hoping they'll pull out all stops to line up an anesthesia team for the PET scan. Please pray for this trip to work out. It is so important to us. We've been delaying the keto diet for 2 months because of this trip and we need to get Cody on that diet...but can't until he has this PET scan.

Thanks so very much for prayers - this week has been incredibly difficult!
with love,
Shawna

Sept. 24

Just wanted to give you an update on the last email - our trip to Detroit is on - the hospital there got an anesthesiologist for Cody (total miracle - the person had only one slot open all week and it happened to be ther morning of Cody's PET scan! Thanks for praying!)

And we haven't had to use Diastat (Valium) again so far. His seizures have seemed to settle down - 8 yesterday and 9 so far today. And great news - today, for the very first time, he went from laying down to sitting up all by himself! He's done it twice now! That's a nice bit of progress - and hopeful for him developmentally to keep reaching new milestones in the midst of all this.

He's had a very happy and gurgly weekend - beginning to say ah-goo, daaaaaaaaaaaaaaaaa, and buh! He's even raising both arms to us when he wants to be picked up. Again, all great progress considering what his little brain is undergoing.

Thanks so much again for the prayers - we will keep you posted!

with lots of love,
Shawna

Sept. 27

We had a great physical therapy session today. The therapist bumped Cody up to a 6-7 month old both mentally and physically. Only one month ago she said he was 4 mos. mentally and 6 mos. physically. I was thrilled. He was especially alert and active - and he's getting better at sitting up although that's still his weakest point. He'll start PT twice a week this week so maybe we'll make even more progress. He just turned 10 months old yesterday - I can't believe how the time has flown. I'm grieving, however, because the Dr. had to cut some of his hair for a test to be run...and gone are his soft golden curls that wrapped around his neck. I am heartbroken. He's had those since he was born...his first haircut at a Dr's office. One more loss to add to my list. I'm shocked at how it hit me. Sometimes it feels like his baby-dom has been characterized by so much loss. I couldn't breast feed because of his reflux. The months lost to seizures. The loss of a perfect little baby's body - now stuffed full of medicine and chemicals. So many things to grieve. If only I had these 10 months to re-live with no medical issues. I can't imagine just being a mom with a baby and actually getting to enjoy him -- instead of dragging him to hospitals and Dr. offices, having him poked and prodded, taking care of him with no sleep and frayed nerves. Definitely not what I signed up for! But hey, I have gotten to see early on that he's a little miracle man! I'd never have gotten a glimpse into his character and fighting spirit like I have. And my love for him has deepened so very much as I've watched him suffer so bravely. So with the losses, there have been gains. Today is a good day and I'm grateful for that. Not trying to borrow trouble from tomorrow or get too wrapped up in the past. Just glad he was happy and active today and got an A+ in physical therapy!

love, Shawna

Sept. 30

Wow - what a week! Every time I turn around, our trip to detroit is trying to combust! From having to get a new insurance company at the last minute (don't ask) to our flight falling through, to the PET scan people saying they had no anesthesiaologist -- and the list goes ON and ON! Honestly, it seems this trip is doomed! EVERY DAY THIS WEEK there has been a new huge glitch. So far I've put out every fire...but I began wondering if God was closing so many doors for a reason. It seems more the case that the enemy is throwing as many monkey wrenches into my path as possible! Which makes me think...that maybe something GRAND will happen!!!! We are SO anxious to get this trip over with. We dread the flight (Cody HATES sitting down for some reason - wants to always be standing) so he will be tough on our laps on the plane. Staying in a foreign city with a sick child won't be easy. Watching cody endure another 24 hour EEG odyssey will be heart breaking. And having him sedated *again* will kill me. But it will be so nice to figure out if this is a brain lesion/focal point and if surgery is an option. And I'm anxious to get Dr. Chugani's take on what to do next. If he agrees that the keto diet is the ticket, we will start immediately and hopefully wean the meds soon thereafter.

Cody's having a great time developmentally (another great day of PT today! He LOVES swinging and they made him his own scooter! granted he lays down on it (it's flat and round) but he whizzes up and down the halls of the rehab center like a champ! But his seizures are worse than ever. They are so violent - I hate them. It's almost impossible to just watch them over and over and over every day with no change. We are at our wits end. The last two days something funky is going on and he woke up at 6am and didn't get any sleep until 7pm! He was so tired all day but just couldn't sleep...he'd just lay there and quiver and twitch. It's just mind bending to imagine what's going on in his brain and body.

Don and I got out tonight for a wedding and had a friend, Tina, watch Cody which was nice. I even put on make up (I'm sure Don was glad...) Haha.

that's it for now - happy weekend!
Shawna