Monday, June 16, 2008
my babydaddy...
Posted by amy at 10:59 AM 1 comments
Sunday, June 15, 2008
happy father's day to all you dads...
Posted by amy at 8:00 AM 3 comments
Thursday, June 12, 2008
results...
they are negative for an eosinophilic disorder. :) could you hear my cry of joy around 4 pm this afternoon? i had all four kids (mine and my brother's girls) and they just stared at me as i sang "grayson doesn't have it" around the livingroom. i think i might have scared them a bit, but i didn't care. our dr. said that it is pretty definitive at this point, but that if he gets worse or something changes that we will test him again and see what happened. so really at this point, we start trialing brown rice. organic so that it is sure to not have any additives. we are waiting to see another allergist who i've heard nothing but good things about. and i guess he's so good, that he can't see us until september 30th. giant UGH for that one. we are trying to get in earlier but i'm not holding my breath.
we are very relieved about this for sure. we still have a food battle to fight but its not going to be nearly what it would have been. i do have to say, that while i am so excited about this for grayson, it kills me that my new friend jen won't get these results for carter unless the Lord heals him supernaturally, which i do find myself praying for. whats amazing about jen is that i know she will be so excited to hear that grayson doesn't have it, even though her sweet boy does. i really really like that about her.
anyway, its late. but i had to share. thank you all for your prayers, once again. we are truly relieved and ready to move on to the next step of getting grayson back to eating food.
Posted by amy at 10:21 PM 4 comments
Wednesday, June 11, 2008
cash daniel sutton
Posted by amy at 1:02 PM 1 comments
Tuesday, June 10, 2008
cousins who are...
Posted by amy at 10:39 AM 2 comments
Thursday, June 05, 2008
all done.
grayson was a champ with a capital 'c'. i might go into detail in this post because, as said before, this serves as my documentation of my kids' lives. sorry if its too much. :) we started the day with me giving him a bottle at 5:30 this morning, just so that i could give him another one at 7:45 , before the "no more food past 8 a.m." rule kicked in, which worked great by the way. when he woke up from his morning nap, i did everything in my POWER to keep him distracted, including pulling he and aislyn up the street for a looong time in the radio flyer wagon that my parents and kenny's parents got grayson for his birthday, SO fun. he would sleep in that thing if he could. of course we were late, so i was totally stressed, parking at the children's hospital is a nightmare. but it ended up that we were fairly early. grayson played with the toys in the waiting room and really did good for a kid who was SO so tired and hungry.
i didn't eat all day either, mainly because of nerves. i really really thought i was going to hurl most of the day. we got back to his prep room and they gave me this pair of orange scrubs to put him in. they were GINORMOUS. grayson was not a fan, and was trying to rip them off until he was too tired to fight anymore because of his lack of sustenance. :) he looked cute in them. but of course it made me more scared, because it was just weird. the nurse brought me a "bunny suit" and told me that i would probably get to hold him while he was gassed. i don't really know what would be worse, holding your kid while they pass out, or having the anesthesiologist carry them away. i will never know what its like to hold them while they are gassed because apparently i am not a "good candidate." seriously. thats what the anesthesiologist told me. he said that he had been to a seminar in arkansas or something, where they learned which moms and dads would actually help the anesthesia process, or make it worse. he said they didn't like to have "two patients" back there. really? that's just MEAN. he said i wasn't holding my sniffles well. what? i mean, i kinda have a cold, i certainly wasn't crying. so i was totally offended by that, and i actually really liked the guy until he said that. but, whatever, i guess he probably knows more about it than me, and maybe i would have fallen apart. but don't you think i LOOK like i totally had it together?
(and yes thats a sock on his arm. its not a foot coming out of his shoulder, though it looks like it). we played in that room for a looooooooooooong time. luckily grayson was great. they gave him a mickey mouse doll to play with, just after his doctor came in wearing a goofy hat. literally, like goofy the disney character. it was great. he said the parents get more of a kick out of it than the kids, which i realized was true as i was a victim of nervous laughter while grayson just stared at him. 
finally they came to get him, and he had already fallen asleep in my arms. the anesthesiologist took him from me and talked to him sweetly and whisked him away. SO HARD. i did NOT care for that part of my day. during our talk with him, he told me that he would be gassed, then get a couple IV's, and then they would intubate (sp?) him (breathing tube). i hadn't realized that they would do that, so that was kinda hard to hear. kenny and i went out into the waiting room, where my mom was waiting for us. she did a GREAT job of keeping me distracted. i don't even remember what she was talking about but her mouth was moving 100 mph which was good for me i think for sure. steffen came up to see us too. his residency is there at the hospital , so he trekked on over and prayed with us during the procedure which was very cool of him. after about 40 minutes, dr. fahl came out and grabbed a piece of paper to map what he had done. in a nutshell, he took a piece of his bowel or intestine, two pieces of his stomach and two pieces of his esophagus. he said everything actually looked normal, except for part of the stomach. it looked very red to him. i didn't like hearing that. he said that he may be making more of it than it is, but he took a piece from the red part and the not red part so he can see if they are different. it will take a week for the results. when we got to go back and see grayson in recovery, he saw us with his little drugged up half open eyes and sat straight up, just yanking on his IVs. he looked so small and helpless as he thrashed about SCREAMING. not a happy camper. i made him sip some water, which he just about threw across the room because ALL he wanted was a bottle. i think i scared the nurse as i insisted that she FIND HIS PACIFIER since it was missing and i knew he needed it. she went back to the O.R. and there it was. he downed his little bottle so fast, and then was back to thrashing and crying in the saddest little voice i've ever heard. poor baby, you could totally tell his little throat was killing him. after a few minutes, they told us we could go. we had borrowed my parents' car (ours is forever in the shop it seems) and we did not have the key to open it, only the one to start it. so while we waited for our rescuer, we took our thrashing baby outside to wait.
we sat on the sidewalk and played with a couple hot wheels, and he was much better. once we got in the car, he fell asleep, sweet boy. yes, that's a sad leftover tear on his right cheek.
the evening has been ok. he was happy to see his uncle taylor and big sister when he got home. he's asleep now, and all is well. we just will wait for the results and pray for the best. thanks so much for your prayers. it was a scary day. but God is faithful as always. and the first gastro endo fdaf;ejkduodenallajfdklsa ;oscopy is over. :)
Posted by amy at 7:27 PM 5 comments
Wednesday, June 04, 2008
biopsy
we got a call from the nurse and they have scheduled grayson's biopsy for two o'clock tomorrow. i'm super nervous as any mom would be, to have drs and nurses take away your barely one year old to knock him out with gas and stick something down his throat and take pieces of his stomach lining. i feel as though i will be an absolute wreck through the whole thing, thank goodness its only an hour. so, please pray for him, for strength, that nothing bad will happen, the anesthesiologist will be a good and smart one, and for peace for kenny and i during the procedure. AND for favorable results! which will take 1 to 2 weeks. :( wish it was same day! thanks for the prayers.
Posted by amy at 4:11 PM 7 comments
Monday, June 02, 2008
the long awaited....
appointment... ya know, i think it went well. we really liked dr. fahl. he's very attentive and took at least an hour with us. he got a full history from us of grayson, back to even when he was in the womb! after looking at him, labs, hearing our story, his gut feeling is that he does not have an eosinophilic disorder. i know, awesome, right? but i have to tell you, its going to be awfully hard for me to celebrate until after the tests are done. he does want to pursue testing for this because of all of his allergies and previous test results, so we will start with a biopsy of his stomach lining, hopefully on thursday, but it might be a couple weeks from now, depending on his schedule. he is puzzled by all of the positive food tests, but on the other hand, he really doesn't trust the RAST testing that they have done. he said there are only a few labs that do the testing well, none of them are here. i'm not sure what that means, except that he said it is possible to get false positives. i said "thirty false positives?" he said "yes". so, there's that. he was quite intrigued by the fact that my uncle was allergic to just about all foods when he was a kid, and i need to call him and get all that he remembers out of him. uncle mike, if you're reading this, call me if i don't call you first. :) anyway, the biopsy. basically, they take my sweet angel boy, sedate him with gas, i believe, and then stick something down his throat and take 3 to 4 pieces of his stomach lining. its done in an operating room with an anesthesist standing by, and then he will be in recovery until he wakes up and is ok. its outpatient, so its same day. it makes me awfully nervous, as it would any mother, but it has to be done, so that we can move on. after he gets the results, if they are favorable, then we start trialing foods. we'll start with rice for a week. if we don't notice any change in anything (poop, gas, spit up, eczema, behavior), then we trial the next food the next week. he wants me to make a list of all of the things i want to be able to feed him. it was nice of him to put it that way. "the things you'd like to feed him". i don't know why, it just felt encouraging to hear i guess. anyway, we'll do this for 6 weeks, with 6 new foods hopefully, and at the end of the 6 weeks, he'll get another biopsy to see if the eosinophil levels have changed at all. that will be a big determining factor to see if he has a problem. so that's about it in a nutshell. neither kenny nor i ate all day long until after the appointment, me- because i was nervous, kenny- because he couldn't find any food. :) so we were pretty excited to go eat the elaborate feast that sweet alyssa and ian had cooking for us! it was LOVELY to at least do something special on this, his real birthday. kenny gets so frustrated with me because i'm so attached to the actual DAY the holiday falls on. we technically celebrated his birthday yesterday when the party was, but TODAY is the actual birthday so i wanted to do something fun. well, really i wanted kenny to take the day off work, to which he promptly rolled his eyes. so thanks ian and lyss for makin' it special. (OH and for bathing our daughter and delivering her to our front door fed, clean and in jammies!!!!! how bout that for the end of the day!) thank you all so much for praying for us today. i really do feel more at peace today. i know that we have to be ok with either of the results. alyssa reminded me today that God does not call the equipped. He equips those whom He calls. isn't that great? because right now, i do not feel equipped to deal with anything like this. which brings up another thing. my new friend jen and her husband scott and son carter all came to grayson's party yesterday. carter is the sweet little boy who has an eosinophilic disorder who i've talked about in a previous post. he is four and absolutely the cutest little thing. jen is such an inspiration to me. she has done so much research for this little boy and she makes every day so special for him! carter and graysoLOVED the hypoallergenic grape kool aid snowcones at the party (jen's idea) and he was just so happy about life! i just wanted to hug the little munchkin. anyway, back to my point. jen, i don't know how you do it! God has given you so much grace and its so encouraging to hear you talk about the recipes for fudge you have come up with using only like 2 ingredients! its absolutely amazing! thank you for giving me courage. i'm just in awe of how you have handled all that has been thrown to you. your family is a blessing to ours. :)
thank you again for the prayers. :) i will keep the blog updated if we get to do the biopsy this week.
Posted by amy at 7:25 PM 4 comments
happy 1st birthday my sweet boy


Posted by amy at 10:06 AM 5 comments
Thursday, May 22, 2008
frogs and steps
grayson did it!! his first two steps together at one time! luckily kenny was home to see it, you always wanna see your kid's first steps.. since then, gray has been practicing walking towards aislyn who welcomes him with open arms. however, instead of standing there patiently, waiting for him to walk to her, she ends up falling towards him and landing on top of him. so that's been fun.
the second thing i am aiming to document today is aislyn's night terror last night. she woke up screaming at 1a.m. which is unusual for her. kenny went to get her and she was talking about the frog that was trying to get her. what? kenny tried to reason with her that frogs are nice. and that there were certainly none in our house. she wouldn't have it. he brought her into our room and while i was holding her, she was quiet and still, and out of the blue started rubbing at her clothes like she was trying to get bugs off and screaming! how odd is that? odd enough ffor us to turn on the light as i prayed there weren't roaches all over her. she's never done that before. maybe that's what night terrors are all about, she has never had one, so we really didn't know what to do. she ended up sleeping on kenny's head with her feet in my back all night. i'm pretty sure that kenny and i were awake for about 85% of the night. the funniest part was at 6:30 this morning, when kenny went and got grayson to bring him to me to feed in bed, aislyn opened her eyes, looked at me and said "good morning mommy. i yuv you." and then closed her eyes and went back to sleep. i expected her to be a terror when she woke up. (that came later) anyways, i'm writing this down because if aislyn ends up with an irrational fear of frogs when she is older, we'll have this to look back to for answers. :) stay away from my little girl, kermit....
Posted by amy at 10:36 AM 2 comments
Saturday, May 17, 2008
cardboard cake
Posted by amy at 12:52 PM 7 comments
Tuesday, May 13, 2008
an update.
we got grayson's bloodwork back yesterday. they tested for 14 foods, and only one came back negative. i know i asked you to pray for just ONE to come back negative, but i didn't really think it would happen that way. so, grayson can eat codfish. i'm hoping costco sells it in bulk. our dr is concerned about a possible eosiniphilic disorder. http://www.apfed.org/egid.htm we have to see a specialist at UNM now, who will more than likely send us to a children's hospital in either cincinnati or denver. hopin' for denver. two of our best friends live there, and could offer much needed support during our stay. so, there it is. don't really have much more to say than that. obviously i'm bummed. we are still seeing his chiropractor and praying that he will be able to help in unexplainable ways. his skin looks GREAT right now. just a slight flare up on his arms at the moment, but other than that, he looks really really good and he took his nap today UNPINNED!! so we'll see how nap#2 goes. kenny found him upinned and on his tummy this morning, so clearly he's just getting too strong. i will be THRILLED if he can remain unbound and free during sleeptime. :) so, there it is.
Posted by amy at 11:53 AM 6 comments
Thursday, May 08, 2008
on a lighter note...
i have to follow that depressing post with this one. today was a pretty good day. his skin looked alot better and he wasn't NEARLY as itchy!!! bathtime was AWESOME. he didn't scratch hardly at all and actually enjoyed lotion time instead of scratching his chest until he was bleeding!!! unfortunately, i will not know which of the FOUR new things that i tried did the trick. i was talking to my friend anna and she was saying how she is too impatient to try one thing at a time, and man i am the same way. was it going back to the old detergent? did the steroid cream that has never worked before suddenly work when i tried it this week? was it that i didn't give him apples today? was it his chiro adjustment yesterday? yes, we are trying chiropractic. we really like our chiropractor and decided it was time to give it a whirl. grayson did great, it took mike all of 20 seconds to adjust him, if that. he really really thinks he can help, so we'll see. i will try anything. i have to take him every other day for the first month. so yea, i'll never know which it was unless i add each thing back in or take them away i guess. anyway, i just wanted to say that today was a good less itchy day!! and they make me so happy i could cry so of course i have to post about it.
Posted by amy at 8:20 PM 3 comments
a bad moment
this video was sent by a friend who has a kid with allergies like grayson (aislyn has them too, just not as extensively). it was shown at the national food allergy initiative conference last weekend in seattle. this made me cry, it scared me so bad that this could be our life. grayson won't be sheltered by me forever. he will be older than 1 someday and out doing things other places. and aislyn, she has already had an awful reaction to a teensy bit of a nutter butter at target one day, causing me to take benadryl off the shelf in the pharmacy and pour it down her throat. she had an egg once and her eyelids were almost swollen shut within 10 minutes. what happens when i can't have them with me all the time? sometimes i think this is too much for me to handle. am i a control freak? probably. but still. is this our new life? will their caretakers understand? their friends? will someone mean kid shove a peanut in their mouth knowing they're allergic? do kids do stuff like that? oh my gosh i have to stop thinking now. i'm so having a moment.
http://www.youtube.com/watch?v=-I1wPqVz8d8
Posted by amy at 8:14 PM 3 comments
Wednesday, May 07, 2008
homeless princess (new title given by gwenna)
i had a couple pics from the last week that made me laugh.
the first is the reason that aislyn will hate me in ten years. i could not get to my camera fast enough and i didn't even have time to change the settings but i really had to get this look and i knew she'd run away.. which she did .5 seconds after this picture was taken.
the second is the reason that grayson will hate me in ten years. :) yes, those are diapers on his knees. but isn't he cute??? not sure what that look is about...i know, i know, he's too tough for knee pads.
the third is just stinkin funny. kenny loves our new floors, and whats more is that he loves sweeping them. so there he is, sweepin' it up, grayson in his kneepads just helpin'....
that's all for tonight. :)
Posted by amy at 9:20 PM 0 comments
Tuesday, May 06, 2008
memorial for sydney grace
Posted by amy at 2:02 PM 0 comments
our little trooper
i took grayson to get bloodwork done yesterday and MAN was he brave! his veins weren't working so hot, so they had to poke his little arm THREE times to get enough blood. it was heartwrenching to watch. lyss met me there to make faces at him and distract him which totally worked. he cried just a bit when he was tired of them trying to get the SEVEN tubes, but never when he was poked. he had a FIT though, after it was over and we were wondering why he was crying so hard, and then realized that the tech had forgotten to untie that rubber thing they put around your arm until you lose circulation. poor thing, his hand was PURPLE. but he did so good. i really wanted to go get him ice cream, but yeah. not gonna happen. anyways, we tested him for 13 more foods and we are praying that at least ONE thing will come back negative. just at lease ONE!! i really want to know that he has a safe food because i'm throwing caution to the wind every time i feed him right now. he's in the middle of a flare up, and i don't know if its the quinoa, apples or the new cream i'm putting on him. of COURSE i would start three new things at the same time. i am so not good at this. i can feel your prayers, i think i'm having a better day mentally today, but the day's not over yet. kenny worked from home this morning and sometimes just having him HERE even though he is in work mode and not doing anything with the kids, helps a ton. i don't know why. and that obviously won't happen very often. anyway, please please if you read this post, say a quick prayer that grayson will have a safe food when we get the results back. thanks :)
Posted by amy at 1:56 PM 4 comments
Monday, May 05, 2008
Saturday, May 03, 2008
just defeat.
we lost corn and rice yesterday. corn- class 3. rice- class 2. i have never been so surprised in my life. i think it very much surprised grayson's doctor as well. i have been giving grayson rice cereal for 6 months at least twice a day. all his snacks have either rice or corn in them as i have been so careful to avoid wheat. i am disheartened. HEAVY hearted. feeling very helpless. don't know what to feed him, or how to help him. however, my dr. told me about another one of his little boy patients who has all of these allergies and more even. he gave me his mom's name and number and she and i talked for an hour last night. she is the sweetest most helpful angel ever. she was so willing to tell me anything i wanted to know and she had awesome suggestions (olives and crushed up smarties anyone? we'll have to learn to love 'em). i learned more from her than i ever have at any dr visit. i am so thankful for her, her little boy has alot more issues than grayson at this point, he is 4 now. and we are adding him to our prayer list for sure. but man, its so nice to talk to another mom who gets it. who would be fine if i just broke down and cried. which by the way, i did in the middle of whole foods yesterday. all i wanted to find was a cereal with ONLY oats in it. (granted, grayson could be allergic to oats and probably is, but no one has told me that yet. he will be tested on monday). all of the "just oats" cereal had either rice or corn in them, and i felt like my world was closing in on me. i was just standing there, with TEARS rolling down my face but trying to hide under my hat because i was so embarrassed (i'm not a crier, though i've cried a heck of a lot the last month or so). it was like all of the cereal boxes were growing and growing and were gigantic and were falling off the shelves and crushing me. i'm not kidding. people take medicine for this sort of thing, and maybe i should. my heart was pounding and all i wanted to do was scream. this sweet sweet sweet man jim (asst grocery mgr) came up to me, he had helped me earlier in my quest for grains, and asked if i was ok. with a very shaky voice, i said "all i want is a cereal with no wheat, corn or rice. i have to have a snack for my boy." he started helping me look, we soon gave up and he took me back over to the grains and started giving me stuff to try for free. sweet jim. i must have made him so uncomfortable, but man he's good at his job. i know God puts people in my path to keep me moving forward. i'm still scared, not sure what i'm doing, but its helping to know my new friend who says i can call whenever i want. on top of it all, grayson has a nasty cold and a fever starting last night so we were up alot which never helps me mentally by morning. :) precious lyssa scoured her cabinets and brought me banana chips and raisins to try for him this morning. we'll see how he does with those. i don't have one single thing that i know he isn't allergic to right now, so everything is still a guessing game until we do more tests. i have to remember in this that God is good and He is in this. every part of this. i don't feel that right now but i know its truth. and where would be if we didn't have truth. totally defeated.
Posted by amy at 9:28 AM 4 comments
Thursday, May 01, 2008
VICTORY! defeat. VICTORY! defeat.
thanks to our angel friends and our new floors and our neocate, our little grayson is doing sooooooooooooooo good at night. he wakes up now an average of 1 to 2 times per night, but really its mostly been only once the last couple weeks. this morning he slept til 7:15 waking up only at 11 and 5 but quickly going back down with paci in tow. so that is a total praise. it has really helped kenny and i's mental state in the morning, which needs all the help it can get right now! so again, i say thank you. thank you. thank you.
i had mentioned in a previous ranting post that grayson would soon have more bloodwork done. but it seemed to me that our doctors weren't really sure what to test him for. maybe just some of the stuff he'd already been tested for to see if the allergy increased or decreased and maybe some more stuff he had been eating. i told our dr the foods i was concerned about, and then i wanted to recheck some stuff. it kinda seemed that he maybe thought we would just do it for my peace of mind, he wasn't expecting anything interesting to come back. he called yesterday, in his deep voice, which indicates that something's not right. and he says, "well, i have some results back, but not all of them.." and he begins to dictate as i write.."carrots - class 2. milk- class 4. egg whites- class 5. avocados- class 3. summer squash- class 2. and are you ready for this? wheat- class 5." are you KIDDING. i don't even know what else we had tested him for! but how is it that everything i just guessed at came back positive? all i give him for veggies at this point is green beans and sweet potatoes, which i am now completely fearful of. he tested negative for carrots, avocados and squash at 5 months old, and BARELY allergic to wheat at 5 months old. but class 5 is like a really bad allergy. i think class 6 is the worst. so, to me, that means that there are tons more foods he could be allergic to. there's no way i just randomly picked six that were positive. MAN. and i just made and froze tons of green beans for him. do i stop giving them to him? i asked my dr about doing more bloodwork. i know it sucks for grayson to get stuck all the time. but i think it would suck more to suffer from an allergy i didn't know he had. i don't know. waiting for dr to call back with the rest of the results. hopefully soon, but like i said, i can't even remember what else it was that they were testing him for. OH. celiac's disease came back negative, so that's GOOD good good. ok, i'm done for now. pray that i will have wisdom in feeding him, i'm at a loss. i feel like all i can give him is neocate. everything is an unknown right now.
Posted by amy at 8:41 AM 2 comments









