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....

cardboard cake

this picture has NOTHING to do with this post. but she's cute isn't she?

here i sit, eating rocky road directly out of the tub (don't eat ice cream at my house), contemplating grayson's first birthday. aislyn's was so fun, mom and i made a polka dot cake and we all wore polka dots, and all our guests wore polka dots, etc. etc. i'm trying to come up with a fun theme, which usually somehow for me revolves around how i can make the food match it, and its kind of difficult. i have been thinking for a long time about how to do a cake for him. when he just had the wheat and milk allergy, it was no problem, they sell wheat free and dairy free cake mixes. but they don't sell cake mixes made of cod. and ew, by the way. can you imagine? so the question is, do i make a cake for guests that grayson can't eat and give him a bowl of quinoa? do i make people eat cod and amaranth with him? what about an ice chip cake (saw it in a video about EE)? a cardboard cake with toys on top, clearly not edible? alyssa had a great idea, and i'll probably go with it and yes it involves ice. non allergenic ice. :) but i just have to groan that i am sad i won't have the classic smear cake and icing all over your face picture of my boy. but i am, on the other hand, happy that he is here and is having a first birthday. don't get me wrong. i'm just a little bummed for him. he's starting to care alot that he can't share snacks with aislyn, and its hard to watch and deny him.

as far as medical stuff goes, and speaking of birthdays, we have an appointment ON his birthday at UNM Children's Hospital with a GI doctor there. i'm praying praying praying that we will find something good out at that appointment and that he can be taken care of here and not somewhere else. pray with us for that please. :) i heard a commercial for UNM Children's Hospital driving home last night. and while they generally make me think and make me sad, last night it made me cry like a baby instantaneously. to hear the parents on the commercial, and to think of my friend jen who deals with this all the time. it was too much! anyways, just a scary time for us right now, so i like to blog and let it all out....

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.

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.

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

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. :)

memorial for sydney grace

as any and all of you know who come to my blog, our best friends ian and lyss lost their baby girl sydney in november. she was stillborn after a sudden placental abruption. i was lucky enough to get to hold this sweet baby girl the day she was born to Jesus, and she was as real as they come. all ten fingers, all ten toes, a perfectly IAN head of hair and alyssa's perfectly pouty alicia silverstone lips. :) just beautiful. she looked exactly like her big brother liam did when he was born, and she was only a pound less than he was too. there will be a memorial for her this saturday at desert springs and then a balloon release here at our house afterwards. keep them in your prayers as this will be a hard but very good time for them this weekend.

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 :)

anybody got an extra gate?

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.

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.