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July 3, 2007
My friend Paula got here at 10:30 this morning and at 6pm she's still here - taking Cody for a stroller walk! Oh the joy of friends who are so generous with their time. She's hung a huge mirror, tacked down a phone cord, cut my hair, watched Cody, folded clothes...what a servant and friend. I've known Paula for years - probably, oh, at least 15. We met in a ladies room at a Wayne Watson concert (for those of you who are nice and young, he's a Christian singer Cody's still been doing well - no sign since last Thursday of the horrible big seizures...just a tiny one here and there. He still rolls around all night and seems to suffer from more gastro issues ... but at least they aren't triggering any huge monster seizures. I saw the OB yesterday and he says the baby has definitely "dropped" and BOY can I feel it! OUCH! But no signs of labor or contractions yet. Don and I had a productive weekend and the house is finally getting in shape to welcome Mr. Casey Graves into it. So the house is ready....but are we??? :) Are we EVER really "ready" to have our lives changed? To have another human being added to our families? I am so excited to meet him, but so scared, so nervous, feel so inadequate....all common "new mom" sensations, I'm sure. 9 months sure flies by. Time moves so quickly, doesn't it? Especially when your children are little. My friend Tina and I have made it a practice for over a week now to email each other 5 things we're grateful for every day. I have to say, it really makes a difference! We've always emailed most every day - but usually my emails are filled with gripes, quips, sarcasms, etc. Instead, I send her my list and she sends me hers....not only am I blessed by her "5" but I'm always reminded by my own how much I have to be thankful for. And at the end of a week, you have 35 things you're grateful for! Now that makes a difference when you review them! I'm so glad we're doing this - it's kind of addicting! I highly suggest it if you tend to focus on the negative like I do. Hard to be a grump when you're writing down your list of blessings. So for the record, here are my 5 for today: 1. Cody's laugh which is absolutely intoxicating, contagious, adorable and healing all at once. And today he's smiled and laughed a ton! 2. Coke. I know I'm not supposed to indulge while pregnant, but I keep a liter in my fridge and every morning I take 1 gulp. Oh, the fizzies and the yummy ice-cold sugar rush. It's SO yummy. And yes I DO know that Coke can erode a car battery! 3. My friend Paula who is a workhorse, a great conversationalist, and who LOVES my son! 4. Cody's 2 hour nap where I can have some down-time knowing he is sleeping blissfully. 5. That tomorrow is a holiday and Don gets to stay home with us! There ya go - for what it's worth - I'm practicing gratitude instead of complaining. Can't promise I won't complain any more...but for today...it feels good. love, Shawna July 6, 2007 Cody has a cold. Ugh. I PRAY I don't get it and wind up being sick during this birth. I can't imagine recovering from a C-section with a hacking cough - OUCH! Please pray, if you will, that I don't get this. Cody's been up the last 2 night unable to breathe - and spends the days fussy and sick. Seizures were horrible the first day of it but have settled down right now. Today Don sold his beloved Dodge Ram. Not an easy thing for him to do - I felt really bad. When I met Don he was passionate about Steer Wrestling in the ProRodeo circut...and once we were married he bought the Ram which was his pride and joy. He LOVED that truck. And it was perfect for towing his horse trailer to all the rodeos. But with Cody's abounding medical issues, the rodeo life just wasn't in the cards for us. You just can't leave every weekend and spend hours on the road with a child with seizures. It's a really tough thing for Don - especially this time of year when rodeos are in full swing. I know it was so hard to watch another man drive his pristine Ram away...one more thing to grieve in this journey of ours. I got a nice email from Cody's neurologist today which I copied below. For most of you, it would be a dull read but for other parents of kids with seizures, it might be of use. There was one bit of great news in my opinion. See my comments after each of his below. Love, Shawna Dear Mrs. Graves:1. The EEG shows a type of discharge that we associate with generalized seizures, in fact several seizures were noted, tonic (stiffening) as well as astatic (muscle tone loss). I think that Marcio recorded 6 seizure in total. 2. The EEG is certainly not the findings found in Angelman syndrome. 3. No, the EEG doesn't show us a particular type of disease or syndrome at this point. Certainly, not anything on the EEG that I would associate with a mitochondrial disease. (Yay - anytime something is a "syndrome" it means it is progressive and has a very specific path. I like it that we still have an open ended future.) 4. Some types of discharges, such as those seen in Cody's EEG are associated with cognitive problems, such as delayed processing and language difficulties. However, the degree of problems with the EEG findings is not possible to judge. There are other EEG findings such as slow spike and wave complex that have more of a predictive value for severe cognitive problems. Cody does not have the latter. (This is great news to me - meaning Cody's cognitive future is still up in the air. And it could be a lot worse than it seems to be.) 5. I have contacted Dr. Bruce Cohen at the Cleveland Clinic and if you want to make arrangements for a fresh muscle biopsy, you will need to call his nurse Polly at 216-445-3624 to make arrangements. I think that the possibility of having a mitochondrial disease with problems in the Electron transport chain to be low, but one cannot rule out a mtDNA mutation or other nuclear mutation (more difficult to diagnose). The biopsy may or may not give us clues. (YUCK - another trip across the country...with a breast feeding baby. NOT my idea of fun! So far we've flown to Detroit and Arizona...now Cleveland.) Regards, Russell P. Saneto, DO, PhD Associate Professor of Neurology and Pediatrics Children's Hospital and Regional Medical Center July 11, 2007
WELCOME CASEY LEONARD GRAVES! Born 7/9/2007 at 7:12 pm weighing in at 9 pounds 15 ounces! OUCH! 21 inches. More photos to come!
Well we're home and LOVING our new little guy! We went in Monday and I was in labor! Ouch! It was 7:15pm by the time I got into the O.R. and we met Casey. What a blur. I made an unusual request to nurse Casey on the surgery table as soon as they got him out (C-section) and they weren't too happy about it...but they complied! So minutes after he was born, he was nursing. And he hasn't stopped yet! I felt especially strong about nursing with Casey because with Cody it was a disaster from the beginning. He had reflux, nasal regurgitation, a floppy larynx, and was diagnosed "failure to thrive" by day 3. So this time around I wanted to do everything possible to pave the way for good nursing. And so far, he's an awesome nurser! In fact we were up all night last night doing just that! So far, he's just the easiest baby! I feel so fortunate. He is good tempered, easily sleeps, easily nurses...wow. And so cute! He has brown hair, dark blue eyes, and did I mention he weighed in at just 1 ounce under 10 pounds!!!!!!!!!!!!!!!!!!!! We haven't slept much in the last few days so this will be short. Cody is pretty much oblivious to Casey so far. He did well with his nanny while we were gone. His seizures are better now that his cold is over - and to those who found time to pray - thank you! I didn't get his cold!!!! Please continue to pray that sickness avoids our house - our hands are full! But we are loving every minute of it.
July 14, 2007 Hi all - things have changed a bit. Altho Casey's been breastfeeding like a trooper, at our post-partum check up yesterday we got the news that he'd lost over a pound. Granted, he's still 8 lb. 14 oz, but they go by percentages and when a baby drops more than 10% of his body weight they freak out. In the last few days his feedings have become more lethargic for some reason - so I'm not sure what's going on. He's just not vigorously eating like he did in the beginning. I'm taking him in to get weighed today and again Monday. If he hasn't gained today, the Dr. said she's have to "treat" him which in her terms means start "supplementation." That means formula. I desperately want to avoid this. Cody was "failure to thrive" from day 1 and one of my greatest goals and dreams is to experience breast feeding with this little one. Please pray for weight gain. The Dr. wants me to stay in bed for a week and do nothing but breast feed him....so that's what I'll do. But today's weight check will be pivotal. Oops, must go - he's waking up. love, Shawna July 16, 2007 Hi there - GREAT news for Casey (and me.) He kept nose diving weight and eating wise...and got to the point that he just wouldn't wake to eat. I was in tears and in a panic - we went to the hospital every day since we've been home - and suddenly yesterday he took a turn and started nursing like a madman again! I am THRILLED because I was looking at what's called "triple feedings" (which I had to do with Cody) where you breast feed every two hours, then pump for 20 minutes, then feed the baby what you've pumped. VERY time consuming, frustrating, and demanding. I SO didn't want to go that route. The nightmare of Cody's first week seemed it was back to haunt me. But my little trooper came back to life and now I can't nurse him enough! He gained 4 ounces in 3 days (normal weight gain for a newborn is an ounce a day) so they have declared him 'out of the woods' and THRIVING. YAHOO! Time to celebrate - I get to breast feed! I don't have to resort to formula or those horrid triple feedings. He is such a joy - such a happy little guy - especially now that he's well fed. We are loving every minute of this time with him. Don's back to work tomorrow, darn. I would have loved to have spent his week off somewhere other than the Dr. office every day - and in a panic and in tears - but hey...at least things worked out in the long run. His parents are here so I'm not quite left alone with both boys yet - a thought which paralyzes me! :) Cody is doing well - still completely oblivious to little bro. I do quite a bit of running between Casey and Cody - trying to give Cody enough time and attention from the mom who used to be at his beck and call 24/7. He seems to be adjusting really well and has had tons of daddy time during the last week which has really bonded them further. It was healthy for Cody to get a bit more separation from me, I suppose. But hard for me. His seizures are back to just a few small ones a day now that he's healthy with no cold. I hope he stays that way for awhile!! Casey is smiling up a storm - so much expression! The only photos I have downloaded so far are from the hospital so here's one more. Thanks for checking in -- and for caring about our little family of 4. Shawna
July 19, 2007 What a roller coaster ride this new baby has been. He's still not out of the woods feeding wise. He keeps gaining, then dropping weight. Just when I get excited, he'll go the next day without eating much at all. We've been to the Dr. & lactation clinic every day since he was born. Now I'm feeding him, then pumping...which takes up 40 minutes per session...and he's supposed to eat 8-12 times a day! You get the picture - this is ALL I do! I'm not ready to give up trying to breast feed yet...but it is getting frustrating and a bit unmanageable with all of Cody's needs. Luckily Don's mom and dad were here for 4 days which made it do-able...but once Don's back to work full time I don't see how I can possibly maintain this schedule. On top of that, Cody's have a horrible seizure spell...yesterday he had 3 huge ones...biggest I've ever seen...and I had to give him the dreaded rectal diastat to calm them down. I don't know if it's the stress of all this change, or a cold coming on, or what. But Cody's really out of sorts lately. He's reverting back to a bit of his "ruminating" habit...also eye poking and other self soothing behaviors are coming back full force. He has had so much change in one small week - please pray that he'll adjust and feel calm and safe rather than needing to self-soothe all day long. What a drama this has all been. I wish it were easier. I thought early on that Casey would be a breeze but these eating issues are certainly consuming. Handling them both is nearly impossible. Each day I'm alone with them for a couple of hours (between nanny leaving and Don coming home) and it is INSANE. Yesterday Cody wanted to be held non-stop (and I can't blame him) because of his intense seizures...but Casey wanted to be held and/or eat and was screaming for 2 hours straight too. So I had both of them screaming bloody murder - wanting me to hold them - yet Cody can't be around Casey because he is too unsafe. I finally gave up and put Casey on my lap in the rocker and let Cody climb up too - I put a big pillow in between them to separate them - and held them that way for over an hour. Now not to be self-pitying...but I DO have a huge C-section scar on my stomach that wasn't too happy to have two kids resting on top of it! And this morning when I had the boys alone, I was breast feeding Casey and Cody had 2 seizures in the other room which made me have to sprint to him to make sure he didn't fall over and hit himself on whatever he was near. That left Casey screaming for food...Cody needing to be held...you get the picture. I feel pulled 100% in two different directions. I knew that it would be tough when I got pregnant, but I expected Cody's seizures to have died down, or at least for him to be a bit more independant. And I didn't quite expect 40 minutes nursing/pumping schedules. So those are my prayer needs for those who have time. On the bright side - we adore our new little boy and each day we adore our Cody even more as we watch him battle so many obstacles in his life. Cody is such a trooper and endures so much with seizures...and now this change on top of it...a new baby brother! They are both a joy to our hearts that we do not deserve. So we are keeping our eyes focused on the blessing not the curses - and we consider ourselves the luckiest parents alive to know our two little ones. love, Shawna July 22, 2007 see photo below of little one snoozing on daddy's chest. Too cute! Well, we're at the 2 week mark with Casey Graves and life hasn't gotten much easier. I've spent the last 3 days attached to a breast pump - feeding Casey every 2 hours - adding a syringe full of breast milk in a tube in the side of his mouth while he nurses - then sterilizing the pump equipment & syringe...then starting all over again! yikes. what's my name again? He is gaining this way, which is a blessing. I give him an extra ounce by syringe per feeding. Seems he has a poor suck reflex and that's the reason my milk is lagging. As the lactation consultant told me, "suck organizes flow" - in other words - if their suck is off, your milk will be off. Go figure. who knew? So as we wait for his suck reflex to mature, it's my job to try to keep my milk supply up manually by using a breast pump (sorry guys...I'm sure you're grossed out by now!) What a saga. Still don't know if I'll be able to breast feed ultimately, time will tell. And I'm not sure how long I can keep up this regime as Don goes back to work full time this week. I'm about at my wits end. But as I try to focus on, Casey still seems incredibly healthy - yay God! That's our story - nothing very exciting. Instead of calling this site "crazy for cody" I think I'll re-name it just "crazy." haha. That depicts our lives a bit better. But on we go...hoping and keeping on keeping on. love, Shawna July 27, 2007 Hi there. Wow - time has flown! Little Casey Graves is almost 3 weeks old! I'm already lamenting that he's growing up too fast - how SICK am I???? I'm going to be one of those moms who is bawling on graduation days and birthdays with the song "turn around" blaring in the background. "Where are you going, my little one, little one? Where are you going my baby my own? Turn around and you're tiny, turn around and you're grown...turn around and you're a young man with babes of your own." I'M BEYOND HELP. What a crybaby I am. But I'm already seeing Casey transform from newborn to baby and I don't like it! :) Sigh. And after 3 weeks, I think we MAY be getting into a groove with breast feeding. Course I've gotten excited before and been shot down so I"m holding my breath. But today he's up to 10 lbs. which surpasses his birthweight - YAY! And the last day I've been giving him nothing but breast feeding - prior to that I"d been supplementing in small amounts. So it is an experiment to see if he can sustain his weight from breastfeeding alone. Please, Lord...let it be so! It was so funny - I had them both alone for 4 hours this morning which is always a fright. Usually they're both screaming bloody murder wanting to be held - and this a.m. was no different. So I had both of them in my lap (quite a sight) - Casey still screaming but Cody calmed down. I've maintained that Cody is totally oblivious to Casey - but I may have to change my tune because in the middle of one of Casey's blood curdling bellows, Cody leaned over and gently (very gently) stuck out his index finger and poked brother in the stomach. As if to say, "ummmm....could you STOP that noise?" I died laughing. And yesterday they were both in their car seats in the back of my SUV and Casey was screaming then too (gee, common theme!)....and about 5 minutes into the screams I hear this from Cody "GRRRRRRRRRRRRRRRRRRRRRRRRRRR." He was obviously exasperated at the noise and since he has no words (yet) he gave out a big grizzly bear growl. So I think Cody's waking up to the fact that Casey is here to stay. One other bit of news this week is that I took Cody to see the neurodevelopmental Dr. at Children's - he's the Dr. will track Cody thru his childhood years in terms of development. Howz this for a title: Dr. of Genetics & Developmental Medicine. He said without a doubt, Cody falls on the autism spectrum. He also said he can't think of one thing I haven't done or one place I haven't gone. That was good to hear - no stone left unturned in the search for how to help my son. That gives me lots of peace of mind. Altho it changes nothing, sadly. That's our news for the day - happy weekend to you! Shawna July 30, 2007 Would you believe my 3 week old newborn HAS TWO PEARLY WHITE TEETH COMING IN ON THE BOTTOM????????????????????????????????????? I'm in shock. I wondered why he got so fussy suddenly the last few days then I saw them today. I guess they're called "neonatal" teeth when they come within the first month. I"m going to call the pediatrician tomorrow to see what's up - sometimes they remove them because their roots are very shallow and the baby stands a risk of swallowing the tooth and aspirating it if it falls out early. WEIRD. I wonder if this interfered with his feeding?? that's all i have to say for now - i'm shocked! Shawna July 3, 2007My friend Paula got here at 10:30 this morning and at 6pm she's still here - taking Cody for a stroller walk! Oh the joy of friends who are so generous with their time. She's hung a huge mirror, tacked down a phone cord, cut my hair, watched Cody, folded clothes...what a servant and friend. I've known Paula for years - probably, oh, at least 15. We met in a ladies room at a Wayne Watson concert (for those of you who are nice and young, he's a Christian singer Cody's still been doing well - no sign since last Thursday of the horrible big seizures...just a tiny one here and there. He still rolls around all night and seems to suffer from more gastro issues ... but at least they aren't triggering any huge monster seizures. I saw the OB yesterday and he says the baby has definitely "dropped" and BOY can I feel it! OUCH! But no signs of labor or contractions yet. Don and I had a productive weekend and the house is finally getting in shape to welcome Mr. Casey Graves into it. So the house is ready....but are we??? :) Are we EVER really "ready" to have our lives changed? To have another human being added to our families? I am so excited to meet him, but so scared, so nervous, feel so inadequate....all common "new mom" sensations, I'm sure. 9 months sure flies by. Time moves so quickly, doesn't it? Especially when your children are little. My friend Tina and I have made it a practice for over a week now to email each other 5 things we're grateful for every day. I have to say, it really makes a difference! We've always emailed most every day - but usually my emails are filled with gripes, quips, sarcasms, etc. Instead, I send her my list and she sends me hers....not only am I blessed by her "5" but I'm always reminded by my own how much I have to be thankful for. And at the end of a week, you have 35 things you're grateful for! Now that makes a difference when you review them! I'm so glad we're doing this - it's kind of addicting! I highly suggest it if you tend to focus on the negative like I do. Hard to be a grump when you're writing down your list of blessings. So for the record, here are my 5 for today: 1. Cody's laugh which is absolutely intoxicating, contagious, adorable and healing all at once. And today he's smiled and laughed a ton! 2. Coke. I know I'm not supposed to indulge while pregnant, but I keep a liter in my fridge and every morning I take 1 gulp. Oh, the fizzies and the yummy ice-cold sugar rush. It's SO yummy. And yes I DO know that Coke can erode a car battery! 3. My friend Paula who is a workhorse, a great conversationalist, and who LOVES my son! 4. Cody's 2 hour nap where I can have some down-time knowing he is sleeping blissfully. 5. That tomorrow is a holiday and Don gets to stay home with us! There ya go - for what it's worth - I'm practicing gratitude instead of complaining. Can't promise I won't complain any more...but for today...it feels good. love, Shawna July 6, 2007 Cody has a cold. Ugh. I PRAY I don't get it and wind up being sick during this birth. I can't imagine recovering from a C-section with a hacking cough - OUCH! Please pray, if you will, that I don't get this. Cody's been up the last 2 night unable to breathe - and spends the days fussy and sick. Seizures were horrible the first day of it but have settled down right now. Today Don sold his beloved Dodge Ram. Not an easy thing for him to do - I felt really bad. When I met Don he was passionate about Steer Wrestling in the ProRodeo circut...and once we were married he bought the Ram which was his pride and joy. He LOVED that truck. And it was perfect for towing his horse trailer to all the rodeos. But with Cody's abounding medical issues, the rodeo life just wasn't in the cards for us. You just can't leave every weekend and spend hours on the road with a child with seizures. It's a really tough thing for Don - especially this time of year when rodeos are in full swing. I know it was so hard to watch another man drive his pristine Ram away...one more thing to grieve in this journey of ours. I got a nice email from Cody's neurologist today which I copied below. For most of you, it would be a dull read but for other parents of kids with seizures, it might be of use. There was one bit of great news in my opinion. See my comments after each of his below. Love, Shawna Dear Mrs. Graves:1. The EEG shows a type of discharge that we associate with generalized seizures, in fact several seizures were noted, tonic (stiffening) as well as astatic (muscle tone loss). I think that Marcio recorded 6 seizure in total. 2. The EEG is certainly not the findings found in Angelman syndrome. 3. No, the EEG doesn't show us a particular type of disease or syndrome at this point. Certainly, not anything on the EEG that I would associate with a mitochondrial disease. (Yay - anytime something is a "syndrome" it means it is progressive and has a very specific path. I like it that we still have an open ended future.) 4. Some types of discharges, such as those seen in Cody's EEG are associated with cognitive problems, such as delayed processing and language difficulties. However, the degree of problems with the EEG findings is not possible to judge. There are other EEG findings such as slow spike and wave complex that have more of a predictive value for severe cognitive problems. Cody does not have the latter. (This is great news to me - meaning Cody's cognitive future is still up in the air. And it could be a lot worse than it seems to be.) 5. I have contacted Dr. Bruce Cohen at the Cleveland Clinic and if you want to make arrangements for a fresh muscle biopsy, you will need to call his nurse Polly at 216-445-3624 to make arrangements. I think that the possibility of having a mitochondrial disease with problems in the Electron transport chain to be low, but one cannot rule out a mtDNA mutation or other nuclear mutation (more difficult to diagnose). The biopsy may or may not give us clues. (YUCK - another trip across the country...with a breast feeding baby. NOT my idea of fun! So far we've flown to Detroit and Arizona...now Cleveland.) Regards, Russell P. Saneto, DO, PhD Associate Professor of Neurology and Pediatrics Children's Hospital and Regional Medical Center July 11, 2007
WELCOME CASEY LEONARD GRAVES! Born 7/9/2007 at 7:12 pm weighing in at 9 pounds 15 ounces! OUCH! 21 inches. More photos to come!
Well we're home and LOVING our new little guy! We went in Monday and I was in labor! Ouch! It was 7:15pm by the time I got into the O.R. and we met Casey. What a blur. I made an unusual request to nurse Casey on the surgery table as soon as they got him out (C-section) and they weren't too happy about it...but they complied! So minutes after he was born, he was nursing. And he hasn't stopped yet! I felt especially strong about nursing with Casey because with Cody it was a disaster from the beginning. He had reflux, nasal regurgitation, a floppy larynx, and was diagnosed "failure to thrive" by day 3. So this time around I wanted to do everything possible to pave the way for good nursing. And so far, he's an awesome nurser! In fact we were up all night last night doing just that! So far, he's just the easiest baby! I feel so fortunate. He is good tempered, easily sleeps, easily nurses...wow. And so cute! He has brown hair, dark blue eyes, and did I mention he weighed in at just 1 ounce under 10 pounds!!!!!!!!!!!!!!!!!!!! We haven't slept much in the last few days so this will be short. Cody is pretty much oblivious to Casey so far. He did well with his nanny while we were gone. His seizures are better now that his cold is over - and to those who found time to pray - thank you! I didn't get his cold!!!! Please continue to pray that sickness avoids our house - our hands are full! But we are loving every minute of it.
July 14, 2007 Hi all - things have changed a bit. Altho Casey's been breastfeeding like a trooper, at our post-partum check up yesterday we got the news that he'd lost over a pound. Granted, he's still 8 lb. 14 oz, but they go by percentages and when a baby drops more than 10% of his body weight they freak out. In the last few days his feedings have become more lethargic for some reason - so I'm not sure what's going on. He's just not vigorously eating like he did in the beginning. I'm taking him in to get weighed today and again Monday. If he hasn't gained today, the Dr. said she's have to "treat" him which in her terms means start "supplementation." That means formula. I desperately want to avoid this. Cody was "failure to thrive" from day 1 and one of my greatest goals and dreams is to experience breast feeding with this little one. Please pray for weight gain. The Dr. wants me to stay in bed for a week and do nothing but breast feed him....so that's what I'll do. But today's weight check will be pivotal. Oops, must go - he's waking up. love, Shawna July 16, 2007 Hi there - GREAT news for Casey (and me.) He kept nose diving weight and eating wise...and got to the point that he just wouldn't wake to eat. I was in tears and in a panic - we went to the hospital every day since we've been home - and suddenly yesterday he took a turn and started nursing like a madman again! I am THRILLED because I was looking at what's called "triple feedings" (which I had to do with Cody) where you breast feed every two hours, then pump for 20 minutes, then feed the baby what you've pumped. VERY time consuming, frustrating, and demanding. I SO didn't want to go that route. The nightmare of Cody's first week seemed it was back to haunt me. But my little trooper came back to life and now I can't nurse him enough! He gained 4 ounces in 3 days (normal weight gain for a newborn is an ounce a day) so they have declared him 'out of the woods' and THRIVING. YAHOO! Time to celebrate - I get to breast feed! I don't have to resort to formula or those horrid triple feedings. He is such a joy - such a happy little guy - especially now that he's well fed. We are loving every minute of this time with him. Don's back to work tomorrow, darn. I would have loved to have spent his week off somewhere other than the Dr. office every day - and in a panic and in tears - but hey...at least things worked out in the long run. His parents are here so I'm not quite left alone with both boys yet - a thought which paralyzes me! :) Cody is doing well - still completely oblivious to little bro. I do quite a bit of running between Casey and Cody - trying to give Cody enough time and attention from the mom who used to be at his beck and call 24/7. He seems to be adjusting really well and has had tons of daddy time during the last week which has really bonded them further. It was healthy for Cody to get a bit more separation from me, I suppose. But hard for me. His seizures are back to just a few small ones a day now that he's healthy with no cold. I hope he stays that way for awhile!! Casey is smiling up a storm - so much expression! The only photos I have downloaded so far are from the hospital so here's one more. Thanks for checking in -- and for caring about our little family of 4. Shawna
July 19, 2007 What a roller coaster ride this new baby has been. He's still not out of the woods feeding wise. He keeps gaining, then dropping weight. Just when I get excited, he'll go the next day without eating much at all. We've been to the Dr. & lactation clinic every day since he was born. Now I'm feeding him, then pumping...which takes up 40 minutes per session...and he's supposed to eat 8-12 times a day! You get the picture - this is ALL I do! I'm not ready to give up trying to breast feed yet...but it is getting frustrating and a bit unmanageable with all of Cody's needs. Luckily Don's mom and dad were here for 4 days which made it do-able...but once Don's back to work full time I don't see how I can possibly maintain this schedule. On top of that, Cody's have a horrible seizure spell...yesterday he had 3 huge ones...biggest I've ever seen...and I had to give him the dreaded rectal diastat to calm them down. I don't know if it's the stress of all this change, or a cold coming on, or what. But Cody's really out of sorts lately. He's reverting back to a bit of his "ruminating" habit...also eye poking and other self soothing behaviors are coming back full force. He has had so much change in one small week - please pray that he'll adjust and feel calm and safe rather than needing to self-soothe all day long. What a drama this has all been. I wish it were easier. I thought early on that Casey would be a breeze but these eating issues are certainly consuming. Handling them both is nearly impossible. Each day I'm alone with them for a couple of hours (between nanny leaving and Don coming home) and it is INSANE. Yesterday Cody wanted to be held non-stop (and I can't blame him) because of his intense seizures...but Casey wanted to be held and/or eat and was screaming for 2 hours straight too. So I had both of them screaming bloody murder - wanting me to hold them - yet Cody can't be around Casey because he is too unsafe. I finally gave up and put Casey on my lap in the rocker and let Cody climb up too - I put a big pillow in between them to separate them - and held them that way for over an hour. Now not to be self-pitying...but I DO have a huge C-section scar on my stomach that wasn't too happy to have two kids resting on top of it! And this morning when I had the boys alone, I was breast feeding Casey and Cody had 2 seizures in the other room which made me have to sprint to him to make sure he didn't fall over and hit himself on whatever he was near. That left Casey screaming for food...Cody needing to be held...you get the picture. I feel pulled 100% in two different directions. I knew that it would be tough when I got pregnant, but I expected Cody's seizures to have died down, or at least for him to be a bit more independant. And I didn't quite expect 40 minutes nursing/pumping schedules. So those are my prayer needs for those who have time. On the bright side - we adore our new little boy and each day we adore our Cody even more as we watch him battle so many obstacles in his life. Cody is such a trooper and endures so much with seizures...and now this change on top of it...a new baby brother! They are both a joy to our hearts that we do not deserve. So we are keeping our eyes focused on the blessing not the curses - and we consider ourselves the luckiest parents alive to know our two little ones. love, Shawna July 22, 2007 see photo below of little one snoozing on daddy's chest. Too cute! Well, we're at the 2 week mark with Casey Graves and life hasn't gotten much easier. I've spent the last 3 days attached to a breast pump - feeding Casey every 2 hours - adding a syringe full of breast milk in a tube in the side of his mouth while he nurses - then sterilizing the pump equipment & syringe...then starting all over again! yikes. what's my name again? He is gaining this way, which is a blessing. I give him an extra ounce by syringe per feeding. Seems he has a poor suck reflex and that's the reason my milk is lagging. As the lactation consultant told me, "suck organizes flow" - in other words - if their suck is off, your milk will be off. Go figure. who knew? So as we wait for his suck reflex to mature, it's my job to try to keep my milk supply up manually by using a breast pump (sorry guys...I'm sure you're grossed out by now!) What a saga. Still don't know if I'll be able to breast feed ultimately, time will tell. And I'm not sure how long I can keep up this regime as Don goes back to work full time this week. I'm about at my wits end. But as I try to focus on, Casey still seems incredibly healthy - yay God! That's our story - nothing very exciting. Instead of calling this site "crazy for cody" I think I'll re-name it just "crazy." haha. That depicts our lives a bit better. But on we go...hoping and keeping on keeping on. love, Shawna July 27, 2007 Hi there. Wow - time has flown! Little Casey Graves is almost 3 weeks old! I'm already lamenting that he's growing up too fast - how SICK am I???? I'm going to be one of those moms who is bawling on graduation days and birthdays with the song "turn around" blaring in the background. "Where are you going, my little one, little one? Where are you going my baby my own? Turn around and you're tiny, turn around and you're grown...turn around and you're a young man with babes of your own." I'M BEYOND HELP. What a crybaby I am. But I'm already seeing Casey transform from newborn to baby and I don't like it! :) Sigh. And after 3 weeks, I think we MAY be getting into a groove with breast feeding. Course I've gotten excited before and been shot down so I"m holding my breath. But today he's up to 10 lbs. which surpasses his birthweight - YAY! And the last day I've been giving him nothing but breast feeding - prior to that I"d been supplementing in small amounts. So it is an experiment to see if he can sustain his weight from breastfeeding alone. Please, Lord...let it be so! It was so funny - I had them both alone for 4 hours this morning which is always a fright. Usually they're both screaming bloody murder wanting to be held - and this a.m. was no different. So I had both of them in my lap (quite a sight) - Casey still screaming but Cody calmed down. I've maintained that Cody is totally oblivious to Casey - but I may have to change my tune because in the middle of one of Casey's blood curdling bellows, Cody leaned over and gently (very gently) stuck out his index finger and poked brother in the stomach. As if to say, "ummmm....could you STOP that noise?" I died laughing. And yesterday they were both in their car seats in the back of my SUV and Casey was screaming then too (gee, common theme!)....and about 5 minutes into the screams I hear this from Cody "GRRRRRRRRRRRRRRRRRRRRRRRRRRR." He was obviously exasperated at the noise and since he has no words (yet) he gave out a big grizzly bear growl. So I think Cody's waking up to the fact that Casey is here to stay. One other bit of news this week is that I took Cody to see the neurodevelopmental Dr. at Children's - he's the Dr. will track Cody thru his childhood years in terms of development. Howz this for a title: Dr. of Genetics & Developmental Medicine. He said without a doubt, Cody falls on the autism spectrum. He also said he can't think of one thing I haven't done or one place I haven't gone. That was good to hear - no stone left unturned in the search for how to help my son. That gives me lots of peace of mind. Altho it changes nothing, sadly. That's our news for the day - happy weekend to you! Shawna July 30, 2007 Would you believe my 3 week old newborn HAS TWO PEARLY WHITE TEETH COMING IN ON THE BOTTOM????????????????????????????????????? I'm in shock. I wondered why he got so fussy suddenly the last few days then I saw them today. I guess they're called "neonatal" teeth when they come within the first month. I"m going to call the pediatrician tomorrow to see what's up - sometimes they remove them because their roots are very shallow and the baby stands a risk of swallowing the tooth and aspirating it if it falls out early. WEIRD. I wonder if this interfered with his feeding?? that's all i have to say for now - i'm shocked! Shawna
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who ... back in the day ... rocked the house.) I saw her in the bathroom and I think I commented on her way-cool purple leather coat (in style back then...give us some slack!) We instantly started bonding right there in the bathroom and have been best of friends ever since! Amazing how a leather coat can bring two gals together!
love, Shawna
We all spent the weekend in our pajamas - me working on feeding and Don taking care of Cody who is still seizure boy. He keeps having these whoppers and we have no idea why - except to assume it's the stress of all the change. He's really having a tough time - is crawling on our laps every single second of the day - is very lethargic but can't sleep. Tough times for the little guy. It won't help that daddy's going back to work full time (he worked 3/4 days the last week).