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July 10
Hello,
Cody is still doing poorly. Thurs. he had 30 seizures, yesterday 20 and today he's had 11 so far since midnight (it is 1pm now). We met with his neuro yesterday and will be admitted to the hospital for 2 days at the beg. of this week for a 24-48 hour video EEG - plus an in-depth MRI Friday. The Dr. is concerned about this left-headed thing Cody has begun - and they *still* don't know what's going on. They say Cody is blazing a trail into the unknown. What used to be infantile spasms has evolved into a mystery syndrome. There's a chance that it is morphing into a less catastrophic form of epilepsy - which is our prayer. But there's a chance it's also morphing into something worse than "i.s." Hard to get much worse than 10-20% chance of being normal...but many infantile syndromes have even worse outcomes. The fact that he is a baby, and the seizures are persisting so long and getting worse despite 4 different epileptic drugs - doesn't bode well. However the fact that he's still developing and not showing any signs of regression does give us hope. He's still Mr. giggles and happy guy in between seizures - but once a seizure hits - he zones out, tremors, and has involuntary movements for a good 5 minute straight. It is heartbreaking.
Rather than shove more and new drugs in him, the Dr. is considering putting him on a ketogenic diet. It's a high protein/low carb diet that can sometimes be done with babies, altho it's not so healthy for them. It's proven to be successful with some epilepsies. It would require a 24 supervised fast at the hospital to kick it off. Ugh.
The poor little guy's only sleeping about 5 hours a night and not much more during the day. However, he is way less voracious which is nice. We're also seeing a naturopath, nutritional therapist, chiropractor, and have him on all kinds of vitamins and oils. I leave no stone unturned!
I am much happier with the neuro and the "system" this week - they have really done a swat team approach on Cody since he's taken this turn. We've gotten lots of eyeball time with the Dr. Even though he wasn't in the office yesterday, he came in to see Cody as an emergency and got 1.5 hours with him and the neurology coordinator. I got to air all my grievences and they seemed eager to please us from now on. I'm still looking for the best of the best in the country and we're willing to fly there as soon as Cody's in travelling condition. Now, we couldn't even take him to Children's in Seattle if we wanted.
So prayer requests: That the seizures would stop. That Cody wouldn't get worse and require another valium suppository. That he would be able to sleep. For a smooth video EEG. These are very tough on him - both the hour long application of the 27 electrodes being glued to his head and the air gun they blow on each electrode. It makes a loud bang every time and is freezing cold. It is very scary for him. Also laying there for 24-48 hours strapped to these wires and machine is so uncomfortable. Watching it all makes me unravel so prayer for me to get him thru the procedures next week - including watching them sedate my little guy for the MRI. It is risky sedating babies - esp. when they have reflux and respiratory problems from the steroids which he does. Prayer for these tests to reveal what we're dealing with. Wisdom for Dr. Roberts in whether to do drugs/ketogenic diet/etc. Our Dr. is on vacation for a week - please pray for wisdom for the other neuros who will be reading our EEG and MRI.
Answers to your prayers: He's had no permanent side effects from the steroids - his blood pressure, altho elevated, is still okay. His liver is still fine. The last blood draw and 1 hour EEG were the smoothest yet. He's still completely coherent when he's not seizing and is developing wonderfully (holding his own bottle, trying to crawl, etc.) Our marriage is still intact and we seem to grow even closer as we battle this together. Our loved ones have rallied beyond belief - providing meals, mowing our lawn, accompanying me to 4 hour long hospital visits, running errands, spending the night with us, etc. This prayer chain has grown to the point where people all over the country and even in Russia are praying for Cody! People who don't know us are fasting for him. It is all blowing us away and has given us many glimpses into the Divine.
Still, for me, there is a pain that is almost unbearable in this. Enduring this pain - and trying to cling to Jesus when I know He is the One allowing it...that is the dilemma. Please pray for my ability to do so.
"Is there no other way, O God,
Except through sorrow, pain and loss?
To stamp Christ's image on my soul?
No other way except the Cross?
And then a voice stills all my soul,
As stilled the waves on Galilee;
'Canst thou not bear the furnace heat,
If 'mid the flames I walk with thee?'
'I bore the Cross, I know it's weight,
I drank the cup I hold for thee;
Canst thou not follow where I lead?
I'll give thee strength - lean thou on me.'
with love,
Shawna
July 12
Hello there -
I'll try to make it brief since my last email reported 30 seizures and I wanted you to know he is doing better. We have given him an extra dose of Depakote a day and the seizures have gone from 30 down to about 12 yesterday and probably about the same today. I can't believe I'm grateful for 12 seizures...but it is a sizeable decrease. No more valium was needed.
So thanks for your prayers! He is also sleeping MUCH better which was another prayer request of ours. He slept from 9:15p - 5:15 am with only a few wake ups in between. And he took 3 naps yesterday and he is on his 2nd today which is also an answer to prayer.
We go to the hospital for the 24-48 hour EEG tomorrow. I'll keep you posted on that.
I'm nervous about managing him while he's tethered to the electrodes and monitor for potentially 2 days. Hard to keep an active 7 month old confined to a hospital bed. I pray he'll sleep much of the time and that the application won't be too rough on him. That's it for now.
As a good friend reminded me today: "We've been given only one piece of life's jigsaw puzzle. Only God has the cover of the box." Max Lucado
with love and thanks,
Shawna Graves
July 16
Hello there,
Well we survived our grueling 3 days in the hospital. The video EEG was 30 hours. To apply the electrodes, he was bound in a sheet with only his head poking out - and for an hour and a half they drew a map on his head with a crayon, scrubbed 29 spots with exfolient, individually glued each electrode on, and then blasted each spot with an air gun to dry it. Would you believe that for about 1/2 the time he lay there silently allowing them to do this? The other times he either screamed or just whimpered. He was amazing. An answer to prayer.
He had his head wrapped this time cause he kept trying to pull the electrodes out! (see photo) He couldn't go further than about 3 feet from the hospital crib the whole time and he did awesome - altho he only slept from 10p-1:30a so it was a LONG night for mom & dad. Dad got to go to his new job on 1 hour of sleep. He had about 25 seizures over the 30 hours so they'll get a really good peek at the various types he has. Some are huge, some are almost undetectable. There are times when he just "trances out" for 5 minutes with no obvious signs of seizure - he'll stare off into space without blinking - and we found out those are not seizures (whew.) They are probably spacey side effects from the drugs. The neuro was super impressed with how Cody's developing despite the seizures since most kids with infantile spasms start stop developing when the seizures first begin. Almost 2 months later, Cody hasn't shown one sign of delay. Thank you, Lord.
He was SUCH a trooper - he had 3 blood draws during the 30 hours as well and took them like a champ. Yesterday was the MRI & spectroskapy which (after a 1.5 hour wait in the waiting room) was 3 hours long! They mistakenly told me it would be 45 minutes so I was a basketcase for the last 2 hours. Yikes. I saw the Lord's hand tho - the Head of Anestheia was 1 on 1 with Cody the whole time which was so comforting since Cody was high risk due to reflux. They bent some rules and let me come in while they sedated him which was heartbreaking but nice to be able to hold his hand and sing him to sleep. They also let me come into the recovery room before he woke up so the first thing he saw was me instead of bright lights and strangers. There were some problems as he came to...he was tremoring and convulsing for about 5 minutes so they had to monitor his heart rate and oxygen levels and I was quite freaked out. But he got over it and gave me a huge grin the minute he opened his eyes. And that is typical for Cody. No matter what he goes through...he smiles the minute it's over. I can't wait to see that character and personality develop as he gets older...to see that trait burst forth in all aspects of his life. God has planted such a resiliency into him already that is so evident. Wish I had some of that!
Thank you for praying for me. I fell apart a few times but in general was able to be strong for my little hero. My love for him only increases with each thing we go through together. Unfortunately Don couldn't be there much due to a new job and no vacation time accrued - so that was really tough on him - and tough on me to not have my rock present during the procedures. A big blessing was that a Dr. at our old hospital (Legacy) developed a love for Cody and still calls us once a week - and she called ahead to Dorenbecher and told them how special Cody is and to give us great treatment - so they were ready for us to walk through the door. She continues to be a great person to go to for advice and ideas during this ongoing trial.
Now we're back home with no needles, electrodes, X-rays, I.V.'s...and he is back to his giggly self in between seizures. Our biggest challenge is that the Zonegran surpresses his appetite and we can't get any of his meds down him unless we hold him down and squirt them in his mouth with a syringe. He takes different drugs 12 times a day so it is a HUGE ordeal to say the least. Please pray for ease in this process - I'm trying every trick under the sun but he just wants nothing entering his mouth. It is horrible to have to hold him down and force these on him. One more thing to break our hearts. And he just needs to get more nutrition.
Please also pray that we could get these results this week instead of next - I can't bear the wait! The MRI is detecting whether any area of his brain is "mis-firing" or if he has a certain focal point...and one of the "fixes" if that's the case (if the meds continue not to work) is brain surgery to remove the area. I'm not borrowing trouble or assuming the worst - simply asking for prayer against that possibility. Although I was told you can remove up to 1/2 a baby's brain with NO affect on the child developmentally. Can you imagine?? Our brains are such weird things!
Our biggest prayer is for the seizures to STOP, please Lord. And for his development to continue despite them. Continued prayer for me as I make big decisions reg. his care - and try to navigate the medical system. Also for his immune system that is so compromised from steroids - I fear he'll get a cold which would send him back to the hospital at this point. They are holding off on the keto diet since his seizures were so dramatic at the hospital and want to use meds instead for now. I'm disappointed because we are SO weary of shoving so much medicine into such a little body. Please pray against any long-term damage from all this medicine.
As I sat in the waiting room panicking, I could almost envision Jesus sitting next to me holding my hand. I'm still trying to cling to Him...but I sometimes slide back into the "Why are you allowing this" mode. All these years of being a Christian and I still can't quite wrap my brain around this pain and simply trust. More prayer needed - I'm sure someday I will look back and see the stretch marks as my faith grew and evolved. Till then, I go day to day - white knuckling it and trying to remember to look for those things to be grateful for: we have insurance to pay all these medical bills. Cody's still developing like a champ. We have the love and prayer support of hundreds of people. We have an awesome marriage and are true partners in this. I have a new dependable car to drive to all these appts. in. Don and I are healthy and able to endure no sleep and constant stress without winding up in the hospital ourselves! I don't have to work so I am free to deal with this. Don got a new job (he was laid off for a month and a half prior to this illness.) And hey, we live in the U.S. where there is wonderful medical care rather than some country where they'd never have even made the diagnosis.
Prase Him in all things...Cory TenBoom wrote about such things in The Hiding Place..."there is no valley that runs so deep...that God is not deeper still."
"And so it often is. Faith, prayer and obedience are our requirements. We are not offered in exchange immunity and exemption from the world's woes. What we are offered has to do with another world altogether." Elizabeth Elliot
With love,
Shawna
July 20
Hi there! We are STILL waiting the report on Cody's EEG and MRI from the Dr. He called me yesterday to tell me he hadn't had time to read them yet (GRRRRRRR). He's supposed to call me today or tomorrow which I hate because I sit at home not wanting to miss the call - and don't even want to take Cody for a stroller walk so I don't miss my opportunity to talk to the Dr. at my desk with all my notes. Luckily my mom is here this week helping so I will be free to talk when the call does come in.
Cody is having a weird reaction to the raised doseage of depakote - he went to bed last night at 9p and woke up at 12:30a, 1:30a and 3a for good. Each time he woke up giggling, babbling, screeching happily and rolling all over bed. It's like he's on crack! He gets so hopped he just can't sleep. Although this is a nice change from yesterday when he was a zombie most of the day. It literally changes from day to day - something new to worry about each day just when you survived yesterday's issue. SO Frustrating. He's also doing a cry/whine/wail off and on all day which I think is from tummy pain which is a side effect of the zonegran. He NEVER cries so this is highly unusual.
Last night we were HUGELY blessed by going to a Home Fellowship that has been praying for Cody for the last 2 months. They've never even met Cody or us...but they go to our church and had heard our story. We stopped by to say thanks - not knowing they had prepared a cake saying "We love Cody" and they devoted the entire evening to praying for us, loving us and getting to know us. One more example of God walking through this pain with us - giving us other to lift our arms when we are too tired. The love and support we felt from these total strangers overwhelmed us. Needless to say, we will be going back to that group - hopefully with a baby who has beaten the odds and is a testimony to the faithful prayer of the Saints.
With love,
Shawna
July 21
Cody is having a horrible day - beginning a few days ago he began having stomach pain from the zonegran and has thrown up all his meds the last two days. I'm talking to the Dr. today about it. He is miserable. Eating only 10 oz. a day and throwing up most of that. I am SO tired of medicine and it's side effects. We had to take him in for a blood draw today too which is always brutal. I feel like it will be years before we have a normal day when we can just enjoy our child. Every day is filled with 11 medicine doses, no sleep for either of us, blood draws, blood pressure cuffs, refusal to eat, crying and the list goes on.
When I get up in the morning I feel as if I'm about to climb Mt. Everest only to do it all over again the next day. I just can't belive life holds this much unending pain. Please pray for Cody. I am getting desperate.
We should be getting the EEG/MRI results today (or so they say) so I HOPE that will be good news.
With love,
S.
July 23
Hello there!
We STILL haven't received the EEG or MRI results after a week and a half. The results are in, the neuro just doesn't have "time" to give them to me because he is "swamped" with brain surgeries. I am livid. I could go on and on, but suffice to say I believe I am faced with yet another switch and there's only 1 or 2 neuros left who have good reputations in Portland - all with 3 month waits. Our doc is supposed to be the best - but he is so swamped all the time that everything keeps falling through the cracks. Can you sense the smoke coming out of my ears via the internet? I checked out Children's in Seattle but Cody's just not fit to travel that far regularly. I would LOVE prayers for wisdom and the ability to make the best decision for Cody.
Our little trooper's had a rough week. The Zonegran has given him tummy problems so he's crying and whimpering a lot, and he's thrown up his last two doses of meds. The Dr. let me take him off it till his stomach settles down, thankfully, but wants to resume Monday. We had a blood draw today and his depakote level is 92 which is close to where we want it. Once it hits 100 we will let it sit there for awhile to see if it will finally get to these seizures. He's still having 9 clusters a day of about 10 seizures each...but they do seem a bit milder. I am just about to go insane watching them all day every day - 2 months now of constant seizures.
I'm working on a website for Cody that's almost finished - more on that next email. It's a tribute to our pint-sized soldier. And I'm trying to get us on Dr. Phil, Oprah and/or Dateline to hook up Cody with the best of the best...someone who will actually make him a PRIORITY. Some of you know I was a TV reporter in the past (feels like a lifetime ago!) and I'm using all my connections...so pray for that if you feel led!
A praise - a home fellowship who don't know us but heard about Cody have been praying for him every week through this ordeal - we met with them this week and were blown away. There was a "We love Cody cake" - we were anointed with oil and prayed for. We were loved and hugged. We feel very full. All this from 15 people who were total strangers to us. Strangers no more - brothers and sisters! Things like this are helping me see Christ in this prison of infantile spasms. Even though he's not "seeming" to heal Cody yet...He is wrapping His arms around us through His Saints. Trust is coming...though slowly...that no matter what happens we can survive it because we are not alone. He is everywhere.
Finally, this from "Streams in the Desert"
When is the time to trust?
Is it when all is calm,
When waves the victor's palm,
And life is one glad psalm
Of joy and praise?
Nay! but the time to trust
Is when the waves beat high,
When storm clouds fill the sky,
And prayer is one long cry,
O help and save!
When is the time to trust?
Is it when friends are true?
Is it when comforts woo,
And in all we say and do
We meet but praise?
Nay! but the time to trust
Is when we stand alone,
And summer birds have flown,
And every prop is gone,
All else but God.
What is the time to trust?
Is it some future day,
When you have tried your way,
And learned to trust and pray
By bitter woe?
Nay! but the time to trust
Is in this moment's need,
Poor, broken, bruised reed!
Poor, troubled soul, make speed
To trust thy God.
What is the time to trust?
Is it when hopes beat high,
When sunshine gilds the sky,
And joy and ecstasy
Fill all the heart?
Nay! but the time to trust
Is when our joy is fled,
When sorrow bows the head,
And all is cold and dead,
All else but God.
--Selected
With love, Shawna
July 25
All right, I’m about to lose my mind. Cody's neuro just stonewalled me for an appt. this week too. Which would make it over 3 weeks before I get any results back from our 30 hour video EEG. I told his nurse that Cody's awake all night from stomach cramps, that I want to discontinue one of his meds and talk to him about a new one, that I believe he's plateau'd in development...and the Dr's answer was "I am not able to meet with Mrs. Graves every week. I talked to her about the EEG already." Yes, he did mention the EEG last week when he told me he hadn't read it yet and would get back to me by last Friday which he didn't. When I try to tell his nurse how frustrated I am, she simply says, "I can't take responsibility for that." The Dr. wants to start Cody on the ketogenic diet - and wants us to start asap - yet won't even have a conversation with me about the pros and cons of it - how it might fit into Cody's protocol, etc. He's just unavailable.
I asked the nurse if she could switch me to another neuro in the system at OHSU and she said she thought that was a great idea. Of course, I won't get an appointment anytime soon, she said. Can you imagine????? Cody has a catastrophic diagnosis...has multiple complications right now...and they are just too busy to deal with him.
I am at my wit's end. I am going to try to get a neuro at Legacy Emmanuel to see us (the other children's hospital in Portland) and I do have a connection there - the hospital pediatrician who fell in love with Cody. But who knows if we can get in this week or not - and the guy would have to review all Cody's records - so I may not get a report on his EEG or MRI for weeks still! And I don't know who is going to take care of these stomach cramps or a weaning schedule for the meds that are causing them. We don't even know which med it is!
Anyway, all that to say, please please please pray today (if you can) that there will be a breakthrough in this. Cody needs a Dr. supervision immediately and even if we switch, he probably wouldn't get attention anytime soon.
Thank you - I'll keep you posted.
with love,
S.
July 27
Hello! I'm going to wait until after a Dr. appt tomorrow to 'send out' a bulk email - but if you're checking in the meantime, here's an update so far.
Through sneaky means that I can't put here in case someone from the hospital logs on - I got my hands on our EEG report! Actually, I got a verbal report today and will get a written one soon. So all I know from the verbal report is that it's still "suggestive" of infantile spasms because of the brain wave abnormality - but there is a "tonic" type of seizing (tonic means stiffening) that looks more like garden variety epilepsy. So once again, MYSTERY. I won't know much till I read it tomorrow - and maybe not even then until it's disciphered by a neurologist.
Cody's still having some stomach cramps from the depakote and he has turned into a sleepy head which is a total switch from how he was on steroids - and equally disconcerting. I can't tell whether his floppy head and dazed look are signs of regression...or drug induced. Tomorrow we meet with Dr. Schimschock who will guide us through a ketogenic diet (Atkins diet for kids) check up - seeing if Cody is a good candidate. I'm still not sure if I'd rather to the diet or a new drug called Vigabatrin - hopefully will get some info tomorrow that will help me decide. We have an appt. Aug. 8th with who will probably be Cody's new neurologist, Dr. Pohowalla at Legacy Emanuel Children's Hospital in Portland. I've heard lots of good stuff about him - and the big ticket item is that our beloved pediatrician who fell in love with Cody works at Legacy and can help us navigate the "system" so we're not lost again like we are at OHSU. But it will be a hassle to basically start over again.
Cody had 8 seizures today - par for the course. The depakote is at full therpeutic level and i'm told that it will take a week or two at the level to determine whether the depakote is a loser or not.
That's about it for now - thanks for reading!!! Love to you all,
Shawna
July 29
Hi everyone!
I've added a new funny photo on the website, www.crazyforcody.com and a special dedication pn the "about us page" if you're bored.
I am so tricky! We got the EEG results - but no thanks to our neuro! I can't say how I got them - but it was very "enterprising" of me! Basically it's the same old story - they can't tell it's still infantile spasms - or if it's changed into another form of epilepsy. But his brain is still very normalized in between seizures so that's good news. And it really doesn't matter at this point what the "diagnosis" is anyway - everything hinges on seizure control. If we can't get control of the seizures there will be developmental delay setting in at some point regardless of what form of epilepsy it is.
He's still having 8-10 clusters of about 15 seizures a day. Lots of tummy aches from depakote. Trouble sleeping at night yet pretty groggy during the day from the drugs. Not mention pubic hair from the steroids (can you believe it??? Heart wrenching!)
We met with a new neuro yesterday who's in charge of the keto diet and he'll work in tandem with our main neuro when we go on the diet which will be 1 month from now (long waiting list.) The keto diet takes about 2 months to see if it will work. As far as our main neuro goes - we have switched to Dr. Pohowalla back at Legacy Emanuel and are thrilled. He has a reputation of being the nicest Dr. in the city. Our 1st apt. is Aug. 8th. Legacy is the home of our beloved pediatrician who fell in love with Cody and she is already paving the way for a smooth transition. She is organizing our records, making sure all of them were transferred, etc. It will be a good and welcome change.
In the next month as we wait to start the keto diet, we will try a drug called Vigabatrin for 2 weeks. It is a newer drug and you can tell if it's working in that short amount of time. It's huge downfall is that in 30% of people it causes peripheral retinal damage. We have wrestled with this decision night and day -- and it's risks. We feel that a 2 week trial (no chance of damage in that small amount of time) will tell us if it would work or not - and if not - then we will move on. If it does work, we will then weigh the risks - maybe take him off and re-visit it if the keto diet doesn't work. We have lots of options. But Vigabatrin is the #1 drug against infantile spasms around the world - right up there with ACTH - but isn't commonly used in the US because of that side effect. At this point, if it comes down to it, peripheral vision loss (if it did happen) may be a fair trade for seizure control and no retardation. Sadly, we are having to prioritize things that way.
We are hanging in there - and I feel some relief since the Dr. situation is worked out. There have been several confirmations that it was time to move on from OHSU - God made it very clear which is nice for a second-guesser like myself! Speaking of God - today was a good day - He showed himself to me in many ways. Our pediatrician's office up the road is so supportive and loving. Our ped. truly treats Cody as if he were her own. Their office is staying late after work one Friday and sending Don and I off on a date. I am truly not alone. I'm grateful God keeps sending that message home to my heart. In the midst of a medical system that makes me crazy, there are a few diamonds and I can't believe we found them! Two friends of mine came over this week and revitalized my dead garden patch. When I take Cody for stroller walks around the neighborhood, neighbors come running to walk with me and find out about Cody. So many ways God is using people to give us hope - hope through prayer - hope during suffering - hope that no matter what happens, we are not alone in this dark forest.
"A man was walking in the wilderness. He became lost and was unable to find his way out. Another man met him. "Sir, I am lost, can you show me the way out of this wilderness?" "No," said the stranger, "I cannot show you the way out of the wilderness, but maybe if I walk with you we can find it together." Emery Nester
Our hearts continue to break over and over again every day as we watch our little guy have these horrible seizures. There just aren't that many promising options left. He seems to still be "normal" (although normal is highly over rated!) but we feel he is plateau-ing developmentally a bit. That concerns us. But we choose to believe in a miracle that awaits us. "Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1
Prayer requests: That Cody will show us signs of continued development and that his brain will continue to progress despite the seizures. For seizure control. For wisdom reg. these scary drugs and protocals. For protection for our marriage as this is highly stressful. For sleep! And for more of Him who sustains us with the River that never runs dry.
As I journey deeper into the abyss of this trial - it makes my heart long for Heaven - where there will be no pain or suffering. And it gives me perspective on this battle - which is but a breath, a vapor, compared to Eternity that awaits us. In Heaven, all of our bodies will be whole and perfect - including our brains! And whatever ailments we have here will be perfected forever. That's when the real fun begins! We will spend Eternity with Cody...this is just a pit stop. That takes the pressure off of things, doesn't it?
"Before you know it, your appointed arrival time will come; you'll descend the ramp and enter the City. You'll see faces that are waiting for you. You'll hear your name spoken by those who love you. And maybe, just maybe - in the back, behind the crowds - the One who would rather die than live without you will remove his pierced hands from his heavenly robe and...applaud." Max Lucado
With so much love,
Shawna
July 31
Hello,
Tough day - Cody had 10 seizures. This grind of watching him is getting to both Don and I. Every time we turn around he's seizing. It's so depressing and defeating. We are ready to do anything to stop these. I get so afraid of the long-term effects of all these drugs - steroids, depakote, Vigabatrin. None of them have been really studied over the lifetime of a baby who was started on them. Who knows what they could do to him once he's grown. I guess I could waste a lot of time worrying about that one. We are constantly told, though, that seizure control is much more important - and that Cody's development is more important than any long term effects the drugs might have. But even the Dr's admit they don't know what these things could do down the line. There's just so much about Cody's life that is the opposite of what I had planned. His reflux robbed me of being able to breastfeed for very long. The reflux robbed me of a "normal" life with my baby the first 6 months - now these seizures have robbed me for the last 2. I envy other moms I see out grocery shopping with their babies in their carts - I wonder if they know how lucky they are as I watch them stroll by. I can't even take Cody to a store because his immune system has been shot by the steroids. Or he might have a seizure and fall out. I want so much for his life - and have to make so many concessions. Nothing is as I planned. But I guess that's life, isn't it? Do we ever plan on the things that break our hearts? they just happen. Tough tough day.
with love,
Shawna
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