| February, 2006 "They're baaaack" |
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Feb. 1 We just had an appt. with a Dr. of development for Cody's 6 month development analysis. Of course he was dead tired and falling asleep during the test so it wasn't his "best." There were highs and lows. She said he'd only improved "inches" cognitively. But he has much more eye contact and tracks much better. Fine motor skills are still primitive - he only scoops at things to pick them up - not even near a pincer grasp. Doesn't turn pages of a book. Doesn't try any cause & effect toys. She didn't give me his exact developmental age (I don't really want to know - why let that bring us down?) I would guess from talking to her that he's about 6 months or so cognitively. Gross motor has improved the most - pulling up to stand is great. Physically they rated him at a 10 month level in some areas (pulling up to stand) but at a 6-7 month level in others (hand/eye coordination - can't crawl yet, etc.) The appt. was uplifting and depressing. On the bright side, the Dr. took 3 hours with us! She was AWESOME and so caring and sensitive. We cried together over some of the losses - and celebrated the victories. The great thing is that in her 30 year career, she's NEVER seen a baby with Infantile spasms IMPROVE - she's only seen them regress consistently. AND she's never seen an I.S. baby whose seizures have stopped. So she was thrilled with that. And the whole department seems very interested in Cody because going seizure free was such a long shot for him. We also saw a supposed world renowned specialist in pediatric development who wants him tested for Rhetts syndrome. He has a repetitive hand clap/punch that is often seen in Rhetts - along with other symptoms like extreme discordination, developmental delay, seizures. Rhetts always lead to profound retardation but is known to affect girls exclusively. This gal is a Rhetts expert and said there is a miniscule percentage of boys who do get it. So tomorrow I take him to the hospital for a blood work up for Rhetts and a couple of it's ugly step-sisters which are also horrible syndromes. We don't get the results for a month or more. On the good side, they weren't saying "he has this" - they are saying that SOMETHING is causing the brain abnormality and it's a needle in a haystack genetic disorder and this is the beginning of looking for that needle. If these tests come up negative (which they probably will) he will see a geneticist who will continue testing for more of these disorders. He's been tested for all the "biggies" so now we're getting into the more rare stuff. Dr. Chugani feels it is indeed a genetic issue but thinks we may never be able to determine what exactly it is. I am glad these people are on board and are working to connect the dots. It's better than me sitting at home looking up stuff and taking it to the Dr's begging them to consider. I like it that they're being proactive. And there's a chance that whatever is genetically out of order won't affect him anymore than having caused the infantile spasms. Just another waiting game. In the meantime, the Dr. said she has no real prognosis for his development because not enough kids have become seizure free from I.S. to have any idea what's ahead. She said that the seizures could definitely have caused some serious damage but that part or all of that damage may be recoverable. She said the meds he's on are high powered adult meds and have never been studied in babies...and we don't know what damage they may be doing as well. So she painted a bleak picture of variables that we are waiting on - and said that for each variable (brain abnormality, meds, seizure damage, genetic syndrome) to "happen to go in a positive direction" would basically be a miracle. She said she'd be shocked if he could turn out 'normal' which of course is devastating. But she said she never says never. She doesn't doubt he'll continue to improve - it's just a matter of "to what degree." She said to focus on the fact that he IS improving and that he IS seizure free. The really COOL thing is that I told the Dr. that the missing element in our conversation was God - and HIS plan for Cody's future. She told me that Cody's brain abnormality is in his temporal lobe - and the latest research shows that religious "experience" occus in the temporal lobe! The temporal lobe is responsible for communication, for speech, and apparently for "faith realization." So if there's an area that God cares about, it's the temporal lobe! I got a kick out of that. I was also bolstered that both of these specialists told me that I was doing "everything possible" for Cody and that they felt I was proactive, on top of things, and that they wished they ran into more moms like me. They mentioned getting his genetic test info from his neurologist and I said "don't bother...they don't keep track. I have paid for all his medical records to be copied to us and I have a file summarizing all of his genetic testing." I've considered this record keeping just "status quo" for a parent...but apparently it's uncommon to see a mom "take charge" of their child's medical care (as they put it.) These days, being told "you're a good mom" is the highest compliment I can receive...and it is like rain in a parched desert to hear it. I am run so ragged in every direction - and it's such a full time job keeping on top of each daily crisis, run to 6 therapy appts. a week, home make fresh organic meals for him 3 times a day, folo up his therapy appts. by working with him at home using what they've taught me, etc etc etc. To hear that these two women felt I was doing it well made my spirits soar. Today we see a neuro at OHSU to have his eye blinks/squints checked out. I pray there is no seizure corelation. I'm hoping for another EEG to determine - we'll see what he says. And now that we're over a month seizure free, I'm pushing for getting him off of Vigabatrin and then zonegran. That would leave him on clobazam only for the next couple of years. Once some of these huge meds are out of his system, I (personally) feel his coordination and cognition will improve drastically. So please pray for wisdom for Don and I in deciding what to do next. In our hearts, we want Cody off at least 2 of the 3 anti seizure meds (they weren't doing him any good anyway until the clobazam came along.) But everything is a risk - changing anything could alter his seizure freedom. It's that tenuous position of wanting to keep the seizures at bay - but not wanting him on these crazy meds for 2 years either. We won't stop the clobazam which is what is presumed to make him seizure free - but these other 2 never even touched his seizures. And sleep is still nowhere to be found. He slept 2 hours last night - as did we. Melatonin isn't working. We don't know what to do. Please pray that God would give Cody's body peace and rest.
Thanks so much for reading all this - I'm so glad you care! feb. 3 Well the last couple of nights have been much better sleep wise! Thank you so very much if you've been praying along those lines! Thanks to the melatonion, Cody has slept in a 5 hour chunk the last two nights so we've gotten 5 hours of sleep each night! Hallelujah! I never thought 5 hours of sleep would make me euphoric - funny how your expectations can change! He's still up from about 1am - 5am so it's still challenging. But it's better at least! We saw our neuro yesterday and he was still hugely impressed that Cody's still seizure free! 5 weeks today! He's ordering an EEG to hopefully rule out any seizure activity attached to Cody's eye blinks/squints. He seriously doubts any seizure corelation and thought an EEG was unnessary...but I pushed for it. It will be sometime next week. He recommended not changing any drugs at this point so we're probably going to keep Cody on vigab & zonegran for another month before we begin tapering one off. The Dr. said Cody's brain is finally resting...and we should just let it rest for awhile. I see his point altho I so want to get rid of these toxic drugs that have never done him any good! Cody's walker finally arrived! Insurance covered it (thank you God!) It's SO adorably cute to see him in it. I'm going to post a photo of it this weekend. It's basically a vice that squeezes him on his tummy and back and the vice is attached to 4 wheels that come down. It's purpose is to support his trunk while he walks. Right now his huge discoordination prevents him from standing and walking becuase he tips over instantly. This helps him gain some strength in his legs & trunk while learning a bit of balance too. It's funny, I saw some tots in these walker contraptions early on in Cody's diagnosis and I remember telling Don "I will DIE if Cody ever winds up in one of those!" The kids just looked so vulnerable in the walkers and leg braces...I couldn't bear to watch them with all this hardware on their bodies when they should be walking and running free like most "normal" kids. God's been kind to toughen me up over the months. I don't feel a SHADOW of those feelings when I put Cody in his walker or while ordering his leg braces. To me, they aren't "hardware that keeps him shackeled instead of running free" anymore. Now they are the very things that may GIVE Cody some freedom someday. I look at this walker as a CHANCE! We have no idea whether Cody will ever walk without some kind of assistance...so this walker is pivotal in helping him become as independant as possible. And the leg braces are another thing that will strengthen his little ankles and calves and give us the very best possible shot at allowing him to walk freely one day. This change in heart...my ability to look at these contraptions as blessings instead of curses...is just one of many supernatural transactions God has allowed me. "He gives me beauty for ashes...strength for fear...gladness for mourning...peace for despair." Those are the words to one of my favorite songs - as well as a quote from the Bible." In exchange for my fear where these contraptions are concerned, God has given me strength. And instead of watching Cody in his walker and thinking of how much our lives are in ashes...I see the beauty of the moment as my little fighter cruises up and down the corridor at the hospital. He draws a crowd because he's so darn cute with his metal legs and velcro straps - going left, right, left, right with his tiny feet. And suddenly I realize that the corridor on the 2nd floor of Legacy Emanuel isn't just a pediatric rehab department...it's Holy ground. And I'm sure there are unseen angels guarding this hallway - attending to Cody's every step. And my little boy, I know for sure, has sprouted invisible wings that allow him to soar above his circumstances and bravely take step after step toward his future. Gotta go, Cody's asleep and I have many bills to pay and laundry to do! We love you all! Shawna feb. 7 It's 4:50am. Cody's been up since 3am. Just another average day in the Graves household! Sometimes at this hour - after being up all night - I feel we're the only people on the planet. Amazing how your world can get so small. We are still SEIZURE FREE! We celebrate that fact every day. Yet, I am only human...and after 5 weeks of no seizures...I have to admit I am chomping at the bit to see a little bit more from Cody. I took him to his group therapy class today and the other kids (who are also delayed) but his same age were clapping, waving, listening quietly as their moms read them a book. Cody claps at times...but it's more like a repetitive comfort movement - it's not an intentional clap that can be cued. He's never waved. And sitting quietly is just not on his radar screen. Cognitively he just seems to be stuck. It's frustrating and maddening. I am trying to hard to "just be grateful" for seizure freedom without heaping a bunch of new expectations on him. But at 14 months...I am hoping for more. Day after day I do the same things with him. I punch the little button on his toys that makes things pop up. He stares. I help him bang a drum. He looks away. I dump things in and out of big silver bowls. He just looks up at me as if to say "what are you doing this for?" I repeat, and repeat, and repeat all the developmental helps I've been taught in his therapy classes...and just never see him pick up on any of them. So many milestones missed. So much to catch up on. Will it ever happen? Will my life always consist of therapy appointments? Dr. appointments? Will he ever burst through this delay? "Remember, Shawna...he is seizure free. THAT is all you need to focus on right now. Let his little brain rest...don't force expectations on him." That is my inner monologue every day. I pray for patience and perserverance. Stamina to read that book one more time as he kicks it out of my hands. Strength to bang that drum and hold my hand over his on the drumstick...one more time. Perserverance to keep saying "how big is Cody? SOOOOOOOOOOOOOoo big!" As I raise his little arms up in the air...only to have him look at me with a blank stare. Over and over and over and over. That is my job. Stimulating him. Prodding him. Learning sign language to try to teach him. I so want that flash of recognition as I sign "more" to him...I so want his little hands to make the signal back to me. But Cody is Cody and he has always done things in his own time. We have an EEG this week to see what these eye blinks are all about - and we wait on pins and needles in hopes they are just another "tic." And that's about it at our house. At 5am he is rolling around and playing in his playpen like a wild man. Looks like it will be an early morning for us. Just one more day ... "how big is Cody? SOOOOOOOOOOOOooooooooo Big!" Maybe TODAY he will raise his arms up all by himself! I can dream, can't I?!? :)
with love, feb. 10
Hi there friends! We're THRILLED, EUPHORIC, & just plain giddy that Cody is almost 7 WEEKS seizure free!!! We had another EEG yesterday to determine whether his repetitive squints/blinks were seizure related. I was very nervous. After 4 long hours at the hospital, to our shock, the neurologist said NO seizure activity...and what's more...this EEG was even improved from the one 3 weeks ago! In his words, "it's amazing...not even a ripple! If someone were looking at this EEG that didn't know Cody, they'd probably consider it normal." What a treat and a blessing! I LOVE it that Cody is confounding even the brainiest of the brainiacs in the world of neurology!!
Cody's walker finally arrived (see gallery photo) It's SO adorably cute to see him in it. It's basically a vice that squeezes him on his tummy and back and the vice is attached to a bar that has 4 wheels on it. It's purpose is to support his trunk while he walks. His huge discoordination prevents him from standing and walking because he wobbles & tips over instantly. This helps him gain some strength in his legs & trunk while learning a bit of balance too. feb. 14
Happy Valentine's Day to you! This is kind of a blue day...I am upgrading this website and had to go thru some old video & photos to locate some things I want to incorporate. It took me back to videos of Cody at 6 months...before anything was wrong. He was so attentive, smiley, aware. So "normal" I guess is what I'm trying to say. I look at him now and keep thinking "I know you're in there, Cody...come out!!!" There are times that he is so inward...almost in a trance. He is SO much more connected than when he was having seizures. But I didn't realize until I saw these old videos that he was once so vibrant and happy. They were heart breaking. feb. 16
Every have "one of those days?" Cody was up from 1:30-3:30am...he woke up at 5am and I FINALLY got him back to sleep at 7am. As Cody's eyes fluttered closed, my cat (under the bed unbeknownst to me) choose this opportune moment to shred an entire roll of wrapping paper. Course it woke Cody up and began my day with a rush of adrenalin as I chased Cooper out of the room. There was no hope of Cody going back to sleep - he was already doing calisthenics on the bed. feb. 17
Today was SO much better than yesterday! Altho the kicker to yesterdays fiascos was that I cooked another home made dinner -- and he ate the whole thing -- then promptly threw it all up! UGH! He's not sick, I think he just gagged for some reason. He still has a bit of trouble swallowing sometimes. But thankfully today, Cody didn't kick any food out of my hands...no major cat catastrophes...just your normal run of the mill challenges. I keep Cody's two little hands covered in winter gloves all day and night because his teething has made him gnaw little bloody spots on his hands. He just won't use any teething aids...only wants to chew on his hands. I think he's suspicious of anything that comes near his mouth because he's had so many meds shoved down him in the last 8 months. If I were him, I'd probably want my own familiar hands instead of a weird shaped teething ring in my mouth! feb. 20
He's still seizure free - Praise the Lord! And he's pulling up on anything that moves! His main drive in life is to stand and walk but his little spaghetti noodle legs just won't cooperate. I pray for strength in his limbs especially - so that they can learn to be sturdy and hold up his body without wobbling.
Please pray that this sleeping streak continues. We're also praying about going back to see Dr. Chugani in Detroit. We have an appt. in April. I want his opinion on whether there's anymore to be done for Cody now that he's seizure free. Dr. Chugani's also the expert on what genetic problems may have caused this and we are just beginning to look for the needle in the haystack diagnosis that will make this all make sense. Cody's brain abnormality caused the seizures...but what caused the brain abnormality? That's the question I'd love answered! Must go - time to attend to my little guy. Thanks for visiting the new site! love, Shawna Feb. 22 Ouch. I got Cody's latest evaluation in the mail. This was done by the development person at Legacy Emanuel Hospital. She rated him as "6 months mental development" and "8 months psychomotor development." Ouch again. SO hard to see in writing. Hearbreaking actually. He's 15 months old now...with the cognitive level of a 6 month old. My eyes well up just writing that. YES, he's seizure free. I am so grateful for that. But these evaluations seem to have a way of knocking my legs out from under me. I realize it's a "snapshot" of Cody on that particular day - when he was actually falling asleep in my lap during the test. But even if I add a couple of months to each grade to make up for his sleepiness...it still makes him only an 8 month old mentally. Here are some exerpts: "Cody is a valiant little boy who has come out of the other end of a long tunnel of significant infantile spasms. Cody presents today as a child with continued but not surprising significant global developmental delay. New to the developmental picture is the fact that he now exhibits almost constant hand stereotypes (repetitive clapping) and athetoid movements that keep him in a steady state of movement. He is able to fix and focus at times and his favorite viewing target is his mother's face. Because of these hand stereotypes, he is currently being tested for Rett syndrome although it is thought to be only a female syndrome. I agree with Dr. Janselewitz that his movement patterns were most likely due to neurologic injury sustained during his active seizure phase. With the constant seizure activity and the wide regimen of anticonvulsant therapy it may be some time before a more clear-cut picture becomes apparent as to what his neurological fallout will be. Forecasting Cody's ultimate outcome is difficult given that it is too soon to make any predictions. His mother was encouraged to read Kathi Snow who provides parenting advice for special needs children." She referred to his movements as "athetoid" several times - athetoid is a form of cerebral palsy marked by involuntary movements and inability to control muscles. Wow - I guess I could appreciate that she thought Cody was "valiant" - which is the understatement of the year! But overall, it's depressing. So much of me wants to say "seizures gone...let's put this all behind us" but a statement like "significant global development delay" is hard to put a great "spin" on. Is this really my son? Is this really my life? Why is it after 9 months of watching Cody stand still or regress developmentally...it breaks my heart to see it on paper? Some days I am so weary of all this. It takes so much energy to try to keep my chin up and focus on the good. But with God's help, that is what I'll continue to do. I'm not ready to come to terms with "prognosis unknown". I will choose to believe that Cody will continue to beat the odds and fight through these delays and stupify all those who doubted it. That is the only way I can survive this right now. I'm not ready to accept. I want to fight and win. Maybe that's dysfunctional, but it's where I'm at at this point in the journey. I want to see my son walk. I want to hear him talk. Those are the most basic dreams I have - but I will start there. I will shoot for those two goals and build on them. I believe God healed Cody's seizures - which by medical definitions should never have happened. So I will choose to believe God will continue to heal Cody's development and brain. Call me crazy - in fact most would have called me that 3 months ago when I refused to believe Cody's seizures would never subside. There's a fine line between denial and faith! I'm not in denial - the tears I shed after reading this report are a very clear indication that I "get" where Cody's at right now. But faith says I believe JEHOVAH-NISSI, "The Lord Is Our Banner" is in front of our family leading the way. And I believe JEHOVAH-ROPHE, "The Lord Who Heals" is our rear guard. He has proven faithful thus far in this crucible...I know He will continue. The Lord allowed me to give birth to Cody, the child of my soul. As the Bible says, "He knit me together in my mother's womb." I must trust Him to continue to knit together those things in Cody that are unraveled. Feb. 23 Wow - Cody slept thru the night last night AGAIN! He slept from 9:30 pm to 6:30 am!!!!!!!!! Hallelujah! That's the 2nd good night of sleep he's had this week. Oh Lord, let it continue. I was dreading cutting down his daytime naps - and it's been such a chore to wake him up and cut his naps short. But I think it's paying off!!! I wish I could say I slept for 9 hours too but by the time our home group left and I did the dishes, made formula, got Cody ready for bed and finally crawled in myself it was 11:30 pm. And Cody is still sleeping very fitfully and his rolling around and half waking up every half hour always keeps me up too. But I'm hoping this will be the beginning of a new rhythm that will eventually benefit both of us. We're now in our morning ritual of Cody in his playpen watching "Arthur" and me drinking my cup of coffee trying to keep my eyes open. I give myself about 15 minutes to just "be" before I begin the medicine dispensation and make him breakfast. He takes either medicine, supplement, or a laxative 13 times a day so I have to get an early start doling them out. Plus now that I'm cooking all his meals fresh - it's about a half hour job to make each meal. Gone are the "good old days" when I could take an hour in the morning to veg out and wake up. For a night owl like me...this is crazy! We had some great news this week - Cody can go from only pureed foods to chewing again! His mouth coordination has greatly improved so yesterday we began experimenting with "snacks" like baked potato chunks, pasta noodles, well cooked beets. He LOVES chewing and is thrilled to have some things to munch finally. Must go begin breakfast...love to you all. Shawna Feb. 24 Hmmmm...last night was horrible. Cody was up from 11:30p to 2a. Hopefully just a glitch in establishing a new sleep routine. Two out of the last four nights he's slept great...the other two he's slept horribly. I guess I'll continue to cut his daytime naps short to try to instill that night time is sleep time - hopefully soon we'll have more than scattered nights of success! If you are a pray-er...please pray for Cody today. I got up with him at 6am and for the first time since he's been seizure free, I saw something "strange." He hasn't had a seizure in 8.5 weeks - but while holding him in my lap and feeding him his morning bottle, he stopped while sucking, went kind of stiff, and stared at me in a very distant robotic way. There was no jerk or eye rolls so I can't say it was a seizure...but something was definitely amiss. I sat him up and he just stared off into the distance for about 10 seconds - stiffened his arms - and kind of "tranced out." As you can imagine, after 9 months of constant seizures...it is my greatest fear that they will return. Sometimes they come back beginning with small quizzical movements like I saw today. I pray it's a medicine side effect or something...maybe fatigue since he only slept 6.5 hours last night? But never having seen this behavior before makes me alarmed. Please, Lord, keep the seizures away. Please have mercy on Cody's brain. Please please allow him to rest and be at peace. Please put a guard of angels around him today (and around me). Amen. Love, Shawna Feb. 25 Hello there - well no more sign of suspected seizure activity since the 2 strange times yesterday. Praise the Lord. He is back to severe squinting/blinking...not sure what that means. His last EEG seemed to show that it is not seizure activity but it was not nearly this dramatic. His eyes remain a bit dilated. I think an EEG is definitely in store for us this week. Please pray that it goes easily for Cody. He has done great the last two EEG's and I hope this one will be a smooth ride too. I also pray that during the EEG this suspected activity reveals itself. So often you have an EEG and the things you suspect don't happen during the 1-2 hours. In that case, they would suggest an overnight EEG which is a nightmare. I pray for wisdom from our neurologist who is SO busy and overwhelmed that I often wonder if we get the care we deserve. I pray that the neurologist would feel a special burden for Cody and follow up on my concerns with the proper amount of care. The neuro who did our last 2 EEG's is retiring so we are back to an old one...one who is especially unavailable. If I called for an appointment today they would give me one in June. So urgent matters are not easy things to get resolved. We've never found a "home" with a neurologist that gives Cody the care I feel good about. We've been to 5 in our area. The "best" ones are impossible to reach. The "less accomplished ones" have never even worked with drugs like Vigabatrin or seen many babies with infantile spasms. Sometimes I think there will be a special jewel in my crown in Heaven to honor the blood, sweat and tears that have marked my attempts to get Cody the proper care. Praise the Lord for Dr. Chugani in Detroit who still answers my emails the day I send them. Don is golfing all day so Cody and I are buddies this weekend...and I think it's about time he got tickled! Lots of important stuff to do...tickling his toes...smothering his cheeks with kisses...playing peek a boo...making raspberries. A full night head of me! Love to you. Shawna Feb. 26 Hello - I saw one more little "incident" of potential seizure activity tonight. I was changing Cody's diaper and his little lower lip sucked in for a few seconds and he cocked his head sideways and gave me a very blank stare. I know that look. I pray I am wrong. Getting an EEG isn't as clear cut as it needs to be...he would have to do this activity during the EEG for us to see if there's any seizure activity attached. Since he's done it 3 times all weekend...it's a long shot. I just can't bear to put him through a 24 hour EEG without a little more proof that something's really going on. Not sure what to do. He's still doing the eye squinting thing too. It's so tough making these decisions. He was pretty happy go lucky all day other than that one moment. And he ate like a champ. Sleep is still very elusive. Last night he was up for a couple of hours in the middle of the night again and was restless all night tossing and turning. Everything with Cody feels like two steps forward, four steps back. It's always been that way. It's a great lesson in patience and expectations. A lesson I wish I didn't have to learn so often! Please please pray that this is NOT seizures I'm seeing...but perhaps more little "tics" or such. I don't know what else I can do besides pray and solicit prayer. It feels so helpless - and so out of my control. It's so crazy...when the seizures stopped I've still felt we had Mt. Everest to climb to make progress with Cody's development. With seizures back, it would be like falling back into an abyss - a dark black hole that you just can't climb out of no matter how hard you try. I constantly think "God, you couldn't...you wouldn't allow them to return would You?" Then I'm reminded of all the parents on my online forum. Parents of children with infantile spasms who have seen seizures return...or whose children have never been free of them. God does allow it. All the time. I will never understand why. I can only trust that what He allows, He will sustain me through. Trust...so difficult. Trust...when your heart is breaking. Lord, you created Cody. I give Him back to You. His future is in Your hands. There's nothing more I can do. I am at the end of myself. And I know that is exactly when You can do Your best work...when I release the reigns and confess that I, alone, am helpless. I need and rely only on You to care for my precious angel. To do with his little body what You will. Guard him and keep him...and please heal him. Shawna Feb. 28 Hi there - just a quick note as we are off to speech therapy. Cody hasn't shown and suspicious stuff yesterday or today (at least not that I've picked up on.) I've requested an EEG sometime soon and haven't heard back. We have an eye appt. at the Casey Eye Institute next week to get his squints/dilated pupils checked out. So I feel better knowing that appointments are being made to evaluate him. He's been very happy go lucky - except at night. He tosses and turns all night long...seems to be gas pain as far as I can tell. I have an ongoing dialogue with the OHSU nutritionist about Cody and we're trying an elimination diet to see what foods he may be specifically responding to. One more huge mountain to climb! Could be lactose intolerance, could be garden variety gas, could be an enzyme issue. Doesn't help that he is constantly constipated from anti seizure meds - we have him on a daily laxative for that. There are so many layers to the onion with him. One problem affects and/or creates another. Sometimes I feel like my job description as a mom is "one who puts out daily fires." I felt I was making some headway in trying to change his sleep pattern by cutting down his daytime naps and increasing his nighttime sleep. But this gas problem has wreaked havoc. He was up all night - literally - Sunday night. We got zero sleep. He doesn't seem in huge amounts of pain when he's awake. I think the gas is just enough to wake him up consistently at night and once he's awake, he wants to party! Teething is still a big issue - but seems it might be getting a teensy bit better. Thanks for your prayers and care!!!! Off to speech therapy...still praying that a "mama" is in the works! I can dream! love, Shawna
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Wow - Cody slept 12 hours last night! He was super restless and tossed & turned which kept me up - but at least he got tons of sleep! I've been depriving him of daytime sleep in an effort to increase his night time hours and I think it's finally working. He had gotten into a habit of napping every 3-4 hours all day and night...with no long stretches. What a chore to try to break this viscious cycle! I've been cutting down his daytime naps to just 2-3 hours total all week and last night was the first fruit I've seen from the effort. I pray it continues!
Thanks to