we are still here

and doing well. it seemed like it took just as long to get back in the swing of things as it did for us to be gone. i don't think i left the house for a week, and if i did, it was because i had to. the kids are doing good. aislyn says she does not want to go back to denver. i don't blame her. it was certainly NOT a vacation in any sense of the word. i think somewhere in my mind i thought maybe it would feel like one.. but alas, no. it did not. i have not ever been that tired i don't think. it was a GREAT trip, don't get me wrong. but certainly not a vacation.

grayson has flared once or twice since being home, but it is likely because i am letting him "be more of a kid" and run through the grass, step in water with his socks off, etc. it's very hard for me to let him do these things, knowing that he will likely flare, but its good because i know how to make him comfortable afterwards. his hands are still his problem area but it's not nearly as bad as it was. i only have to do a scratch check once or twice a day and i think he is understanding that when he scratches, it hurts. we have done several wet wraps on his extremities and he lets us, so that's good. i've done his head a couple times, but he usually pulls it off his face within 20 minutes. i'm looking forward to the fall, his eczema seemed to do a little better last year in the fall/winter months, and i hear it's usually the opposite. so i'm not sure why that was the case. hopefully it will be the case this year too. he is eating SOME new foods, but not tons. he loves fritos, raisins and sometimes corn. i still canNOT get him to eat apples and grapes, though he carried one around yesterday, which i guess was a start. aislyn encourages him to try new things, it's cute. she's a self proclaimed "good" big sister.

we are enjoying our summer but would really like for it to not get hot until 1, during naptime so we could go to the park in the mornings. but oh my word i just can't get out in the heat. i have fall fever, as usual. i want to buy pumpkins and halloween costumes and it's july 10. typical.

i have no pic for this post..sorry. i know that makes them considerably more interesting!

and now for something unrelated to allergies...

we went to the denver aquarium. and this is the most bizarre fish i have ever seen. i really though that it was going to start talking to me. and it was HUGE. it was, like, a person fish.

that's all i have today.

we are so home.

so so home. it's 7:42 in the a.m., grayson is still asleep, aislyn is playing in the backyard on this cloudy yummy day, i'm sippin' coffee and lamenting over the stupid photo ticket that was due while we were in denver and is now late... i totally disagree with the ruling of course. i MUST have had a green arrow, you just can't see it...

i have never been so happy to be home. i feel like NOW i am on vacation! is that so weird or what? my house looked different, smelled different, it was so weird to walk through the door! the kids went to bed so so happily last night, to be in their OWN bed! grayson didn't sleep through the night, he woke up out of habit, but not until around 3! and i THINK that if we had been of sound mind, we should have just left him in there and seen if he would fall back asleep. he was just talking to himself, and i, in a very disoriented state of mind, told kenny that i did not know where i was, and would he get go grayson. and kenny, in the same state, obliged. so maybe tonight will be different. he didn't scratch (unless he's doing it now) and kept his hand socks on all night long which we were told to still try and do for awhile. we're hopeful that his itchy waking days will soon be over.

i do intend to write in detail about all of grayson's "diagnoses" and what foods we can try, what we canNOT try and what it means for his new diet! it's actually, right now, a little MORE stressful because i have to read labels like a HAWK. and i have to read other people's labels like a hawk if we go somewhere! which, might be irritating.. so i apologize in advance. :) ha.

i really really can't thank you all enough for keeping up with our journey and praying for us. i feel a million times better than before we left, we both do. and i want to find a way to get the word out about this place. so if you're reading this, and your kid has eczema and a RIDICULOUSLY high IGE (gray's was almost 9,000 i found out) and tests positive to almost any food via blood and/or skin test.. some of them may not be true allergies and may just be cross reactive to other things. however, don't give your kid the food without medical supervision... i'm just sayin'.. and please, shoot me an email or a comment if you want more info on National Jewish.

there's my plug for NJ. maybe they'll send me a check. or as becky and i talked about, a commission for everyone we send there. ;)

off to start my day. at my house. not in denver. :)

all done.

all done.

our time here is done. i really can't believe it. i'm completely exhausted and will write more about all his diagnoses and how much we love this hospital later... but for now, i wanted to share a few pics and give you a list of grayson's new foods.

corn, oats, soy, grapes, apples, white potato, beef, turkey, pork.

how awesome is that? we were given a list of some other foods which we can challenge at home and then a lengthy list of things that he should avoid at all costs. and they gave us a home care plan, and an action plan that goes with him everywhere along with his epipen. it's very detailed and makes me feel so much better about leaving him with people. and i'm sure it makes them feel better too. :)

for father's day, we went to MY favorite restaurant.. :) maggiano's, on 16th street mall. kenny was pleasantly surprised. they had spaghetti for aislyn and rice noodles for grayson and our food was DIVINE. happy late father's day to my amazing husband, thank you for supporting us. love you. (and happy daddy's day to my daddy, i can't wait to celebrate with you when we get home!)



every morning, the "art cart" comes along and the kids get to make crafts.. aislyn made these, one for her, one for grayson.

this.. is our amazing team of doctors. these pictures are so special to me. i posted the one of jen and of dr. fleischer in another post, and i forgot to get one of shannon (another one of our nurses).. this is dr. searing, our main dr, in his fellowship at NJ. and he is awesome. i seriously can't say enough about our team.
this is emily, our other nurse. we basically only had jen or emily. and we LOVE them.
this is the, i believe his title is "attending physician" of the unit, head over the unit, you get the picture. dr. szefler. and he is so great. as you can see, grayson is thrilled to be taking ALL of these pics. ha.
all of these doctors were around ALL the time, completely approachable, and so helpful. they have changed our little boy's life, and ours, for the better. God truly blessed us with finding this place.

this is just funny. its a little display case of dolls in wet wraps. you can see the appeal for a pic...

long drive tomorrow. thank you all for your prayers. we felt every one. thank you so much.

bunless burgers and fries.. here we come.

that's right ladies and gents. we passed potatoes and beef today. i really can't believe it! i wasn't terribly worried about white potato, but his beef numbers were up there, (beef is cross reactive to milk, and we KNOW that is a true allergy) and the docs have been up and down about whether or not to try it for a few days. but we did it. and he did great. he had eaten more than a whole burger patty by the time of his last dose. for the potatoes, we did french fries and he loved them. who wouldn't?

and now, for approximately 16 pictures. :)

i'm really terrible at moving pics around in the order i need them on this particular computer, so i will just tell you what each one is...

we went to a street fair with mike and heidi (one of kenny's childhood bff's) and their son owen, who just turned 1. it rained on us the whole time, but we had umbrellas. and the baby boutiques were so so cute that i didn't care. (i'm a sucker for a good baby boutique.)and now we jump to bacon. we went out for dinner a couple nights ago... it was a small place, with no one hardly in there, and a very nice waitress so we decided to ask if they could make grayson an allergy friendly plate. we asked her how she made the bacon, if he could have corn made in a clean pot with NOTHING around it, and if they had an apple. she complied and brought us out his plate with corn, bacon and two apples neatly sliced. :) NOTE- we don't plan on making this a habit...eating out with him that is.. there is the fear of cross contamination and someone not being careful in the kitchen...so for the most part we will continue to take his food with us, which is fine. we're used to it.

back to the fair...

and back to the bacon... we could not get grayson, at first, to eat the corn. all he wanted was bacon. finally he decided that he would eat the corn as long as he could use the bacon for a spoon. weirdo.



this next one is AWESOME. GRAYSON IS EATING POPCORN!!! they had kettle corn at the fair, and the man told me that it was just soybean oil, corn, sugar and salt! and oh my word did he LOVE it! it was so fun to watch him eat a treat with everyone!
grayson has discovered that when not wearing socks in the car, it is fun to eat his toe.
and we're back to the popcorn.
sweet little owen at the fair...



not sure what all the leg extending is about.


grayson is doing really good. he is flaring a bit on his feet and the bottom of his legs. i have let him wear shorts for two days (giant sigh) and that could be why. so we wetwrapped his legs tonight and hopefully they will look better tomorrow. our discharge meeting is at one tomorrow, i really can't believe this has come to an end. it has FLOWN by. i think everyone is ready to come home. the kids' schedules are so messed up and aislyn is a bit crabby because of it. pray that tomorrow i will remember EVERYTHING that i want to ask the docs while i have them all in the same room.

i can't begin to tell you how much better we feel about all of this. our son can eat food. God has been so gracious to lead us to this particular hospital with these docs to really nail down what are his issues and what aren't his issues. we understand it all so much better now! and met amazing people in the process! not sure what we will challenge tomorrow, we're gonna talk about it in the morning.

off to bed now. thanks for checkin in...

plea for prayer for blake

becky and blake got home this evening after an exhausting couple of weeks, and blake had an anaphylactic attack to something but they are not sure what it was. becky and ryan had to epi pen him, and then he was taken to their hospital to be monitored overnight. he's doing fine now, but this is just a WHOLE lot for them to deal with. i can't imagine if one of the kids fell down and scraped their knee right now because of how tired i am after this trip, much LESS if one of them had anaphylaxis. please keep becky and ryan in your prayers, that they would be able to put a finger on exactly what it was that triggered his attack. and pray for blake, that he would quickly recover, and that they would all be able to rest this week.

we sure love our jen...

jen is grayson's nurse, the one we had almost the whole time. and she was amazing. so good with grayson and just REALLY good at what she does. she doesn't work on mondays or tuesdays, so we had to bid farewell to her on friday, since g's last day is tuesday. i can't believe it's almost over! these couple weeks have gone by fast...

all about blake...

i wanted to post, for my sweet sweet kindred spirit and now close friend becky, a couple of her precious little brave boy. they came over friday night for a jaunt in the fountain... grayson's first experience IN a fountain, with a diaper and a tshirt on. maybe a little white trash, but we didn't care. and he CERTAINLY didn't care. i will post the ones of grayson later, but i wanted to post these of blake now. congrats blake on your SUPER big new diet!! and thanks becky, for being my sanity. i really just really am so glad you were here at the same time we were. i mean, what are the odds.. divine intervention i tell ya....

happiest he's ever been.

kenny and i both agree. we've never seen the kid smile and laugh so much. it's so refreshing. just wanted to share some of the happiness...

i am so not a doctor.

and that's ok.

today was soy.  and it was looooong.  this was one that the docs wanted to be super careful with soy because of his numbers, so they took it slow.  it was about six doses every 30 minutes, which he took like a champ, but it meant he couldn't nap until about 1:00 after his last dose.  he got a couple hives right at first, but we determined they were from the bath he had after his first dose, and they got smaller and smaller throughout the day.  but then after his nap (which was 30 minutes because it was loud- there were aLOT of boys in the unit today), he was super red eyed and scratchy and coughing.  but he was EXHAUSTED, totally worked up and having a meltdown, so we had to wait two hours and try it again.  after THAT large serving of soymilk, he was fine, and has been ever since..soooooo

it's a pass.  :)  GIANT SMILEY FACE.  this means elecare can be backed off on.  not gone altogether yet, depending on how mon and tues go, but we will meet with the nutritionist again on tuesday to determine that.  

one of our doctors could tell that i was so hesitant about calling it a pass, but in retrospect, it really was.  he kept saying "DO NOT BE AFRAID to give it to him."  once again, i have to trust!  

have i mentioned that i love this place?

we had the option to come in tomorrow (saturday) for a challenge, but grayson needs a break.  bad.  mommy needs a break bad too.  i really really have not ever been so worn out.  ever.  not even after 30 hours of labor actually.  i think i'm even more tired than that.  

kenny comes back tomorrow morning, first thing, and we could NOT be more excited about it.  courtney, her mom and the girls leave in the morning. :(  she has been a huge help this week, thanks girl.

so guess what grayson did this evening.  you'll never guess what i LET him do this evening.  he PLAYED in the FOUNTAIN with his ...  get this....  SOCKS AND PANTS OFF.  can you believe it?  just runnin' around in water with a diaper and tshirt on!  he was so unsure for awhile, blake kept trying to get him to get IN the fountain, and he would politely say "no" and just walk circles around it, for probably half an hour or more.  once he got in he was just screaming "MOMMY!  WATER!  MOMMY!  WATER!"  he was in heaven. and it was cold.  but he loved every second of it.  inside i was freaking out a bit, but the thing is , i knew what to do.  i soaked him,  i wet wrapped his legs up to his knees and then put him to bed.  and it should be ok.  it's so nice to know what to do.  

i love this place.  but i will be SO sad that becky and blake are not there on monday.  blake had a great trip and passed a lot of foods.  i think he's up to 30ish now, which is so encouraging.  

all done for now.  ya'll with the comments... thank you so much for leaving them. i LOVE to read them, they are all just brilliant and encouraging and funny and just thanks.  :)