on this day in history...

i took asher to our local emerg. he was having trouble breathing. i thought he would just need some oxygen and then he'd come home.

instead, we were sent to london.

where dr pepelassis (aka, "pepy") checked out asher's heart.

"usually babies with this condition," he said, semi-panicked, "are operated on right after birth. he's eight days old now. it's too late. he's going to die. you have to be strong now, so pull yourself together, and come back and say your good-byes."

he called SickKids anyway, and they told him that if he could get asher stable enough for transport, that they would take him and "see if they can try anything."

in toronto, i was drawn a picture of a normal heart.

and then i was drawn a picture of asher's heart.

and there is a lot of stuff missing in asher's heart.

on this day four years ago, the cardiologist in toronto went over our options:

1. 3 open heart surgeries. one right now, one at six months, one at two years.
2. very new (read: partially experimental) but gentle closed heart surgery now, massive open heart surgery at six months, and open heart again at 2 years.
3. transplant. meaning weeks or months on by-pass, and the risk that asher might not live long enough to get the new heart.
4. comfort care. (for those unfamiliar with the term, it's pain management and nothing else.)

that was four years ago.

and right now, as i type this, asher is watching Roly Poly Olie, and drinking juice with his fingers. he sticks his hand into the cup, then sucks (noisily, i might add) the juice off his fingers.

it's been a long four years, to say the least.

i'm hoping we'll have many, many more.

and today is another special anniversary. one of asher's little heart buddies, Yale, is celebrating his heart anniversary today. two years ago, Yale was given his new heart. and believe me when i say, he hasn't looked back!!

so congratulations, yale and family. :) and thank-You, God, for saving and preserving my littlest man's life over the last four years. 

it's a sad day today.

my post this morning was inspired by a post on Adventures of a Funky Heart, written by Steve Catoe. the entire blog is devoted to CHD, providing tons of information about research, treatment, goals for the future.

Steve was born with tricuspid atresia. it's similar to HLHS, only on the other side of the heart. he had the BT shunt when he was very young (i forget what age), he had an early version of the fontan, he had a pacemaker. he survived sepsis, endocarditis, gout, CHF. he was one of the oldest CHD survivors.

i shared many times, both on this blog and on facebook, from his blog. the writing is incredible, and the information is invaluable. so many times, i commented on his posts, and he would reply, not only on the blog, but often directly to me, as well, usually making jokes or vowing to find the information i was seeking.

today we learned that steve, at the age of 44, passed away sometime late last night or early this morning.

to say he will be missed is an understatement. he was a relentless crusader for CHD. he was a cheerleader for heart warriors and their families. he was a fount of information. he was funny, intelligent, and encouraging.

please. if you know a heart warrior, hug them today. Steve lived a long time by CHD standards. not all CHDers have his kind of longevity. but i will end with a link to his post from the other day. it sums up his mission and goal.

A Cure for Heart Defects!

RIP, Funky Heart. our broken hearts are breaking. you will be missed.

prayer requests

i'm rallying the troops tonight for a couple friends who need prayer.

Shawna
i've mentioned shawna before. and once again (or rather, still) she needs prayer. the complications in her pregnancy are getting more complicated. it's very scary. i won't go into detail, but it's terrifying. please pray for her, the baby, her husband, their seven children, and her mother. she has a couple appointments in toronto on thursday. please pray.

Ella
sweet little ella is a heart baby in australia. her mother, shannon, is on my facebook. ella had a stroke tonight/tomorrow morning (time differences). please pray for ella, shannon and her husband neil, the docs... ella had heart surgery on 26 october, everything went well, and she was home three days later. but now... yeah. please, please please pray for her.

i'll try to keep you posted. meanwhile, please continue to pray. thank-you.

the plan for tomorrow

the cardiology clinic at SickKids called this morning, and i now have the times for our appointment.

we have to be at bloodwork for 8am (it's usually very busy there, with a long wait, so we need to get there bright and early). after that, we're scheduled for an echo at 9. once that's done, we'll likely have an ECG and then we'll see dr russell.

all this means... asher and i will be hitting the road around 4am. (in case you're wondering why we wouldn't just stay in hamilton overnight... i'm weird. i love driving the 401 in the wee hours.)

i will update tomorrow with all the details. and yes, i'm packing a bag. just in case. last time we had one of these "emergency" appointments, we were admitted, and i believe it's because i hadn't packed anything. haha so we're warding off the "admission spirits" by coming prepared. haha (ok, i'm not actually a superstitious person. but our pattern has been that, when i don't pack anything, we get admitted. when i come prepared for a few days' stay, they send us home. every time. haha) so please pray for us, that we will travel safely, that the appointment will go smoothly, and that asher will show these symptoms. or, if you're more inclined, you can feel free to pray that asher be healed. but since i don't believe that that is the miracle God will do/is doing with asher, i will be praying that he has these symptoms tomorrow.

he actually seems to be getting worse as time goes on. he doesn't have the usual amount of energy, and hokey doodle is he ever irritable!!! (he's usually very laid back and happy, so this is a huge change and pretty difficult, stressful and heartbreaking to deal with.) he's also still puffy and pale. so please pray for us tomorrow.

and some other prayer requests:

please pray for my friend shawna. right now she is on her way to mt sinai hospital for the second day in a row with some very concerning symptoms. she has a lot of health problems at the moment, and what she's facing is terrifying. my heart is just breaking for her. so please pray for her, and for the doctors, and for her family (she has 7 children at home). things are not looking good on a number of fronts for her right now. frankly, i'm really scared for her. i'll keep you updated on her, as well.

a lovely little baby hannah, whose parents i met at SickKids in the spring. hannah has TGA and a couple other heart defects, and well, she's not doing very well at the moment. she has also been in and out of emerg over the last week or so, with some very concerning symptoms. they expect that she will need another surgery in the near future, but they're waiting for it to be absolutely urgent. it's a stressful, frustrating, freaxiating thing to have to watch your baby's health deteriorate before they operate, so please pray for rachel and nick (hannah's dad). please also pray pray pray for hannah.

i think that's about it for now.

please pray

i went to visit a "friend" today... it's in quotes because i'd never actually met her, but she's on my facebook and she's a heart mom, so it counts in a strange, 21st century kind of way...

shay's son Ali is in PCCU in london right now. ali has HRHS (like asher, but the other side of the heart). he is 5 years old, and he has plastic bronchitis (a complication which only happens in kids who have had the Fontan, which Ali had 2.5 years ago, and it has been a constant problem ever since).

he is not doing well.

he is in surgery right now. he has a chunk of something gross (a "cast") blocking his right lung and there is a nasty infection in there. he has been intubated for a few days.

his mom is really scared right now. i won't go into detail out of respect for her, but this is not good. please please please pray/send good vibes/cross crossables for Ali and Shay right now. whatever is afflicting asher is nothing compared to this, so please hold them in the Light. i will try to keep you posted. thank-you.

some sweetness.. and some sadness...

blithe wanted to take some pics tonight with my phone, so i let her. lol i thought i'd give you a peak at what down-time is like around here. :)

especially since... today, asher went for therapy again. and that breaks my heart.

as usual, he first went straight for the cars and threw them all into the sandtray... and proceeded to bury them. then he pointed out a generic tow-truck which he keeps telling us is "like Mater." after a while of burying the cars, KW asked asher what mater does.

"he hook cars up to his tail."

"which cars? any cars?"

"no, juss de broken ones."

"oh, ok. what does he do with them?"

"he take dem to de garage."

"to get fixed?"

no answer.

"do the broken cars get fixed at the garage?"

nod.

"does it hurt the cars when they're getting fixed?"

no answer.

"do they feel better when they're done getting fixed?"

no answer.

after a couple more minutes, KW decided to join in his game. so she picked up a red car with a missing wheel.

"help, mater, help! i'm broken! can you help me??"

"here come mater! he hook lightning [the red racecar. my bad, i should have specified.] up and take him."

"where is he taking lightning?"

"to de garage."

"what's going to happen there?"

no answer.

same game for several more cars. once she stopped playing that game, he buried all the cars that "mater" took to the garage.

do i need to explain any of this? i hope not. because it makes my heart go down to think about it.

so please hold asher in the Light over the next while. dealing with all this now is much better than letting it fester for years until it's overwhelming and he begins acting out... but seeing just how traumatized he was by the events of this spring is absolutely heartbreaking. so please pray for him.

also, since you're praying... please pray for asher's little heart buddy, Hannah, who has TGA (transposition of the great arteries). she is in the hospital right now, in st thomas. she is now doing better than she was the other day when she was admitted, but momma (Rachel) got some nerve-wracking news today, and they are now, basically, waiting for hannah to get really sick before they do anything. she will need to have her aortic arch ballooned or stented, and there is some narrowing in her pulmonary valve, and her MPA isn't doing so well, either. so it's "wait and see" for now. so please hold this family (dad is Nick) in the Light over the next little while. this is stressful, knowing there are a bunch of issues that need to be dealt with but that aren't being dealt with until "absolutely necessary." (for the record, they're not being reckless about this. there's a reason they're waiting, but i won't go into too much detail.) a stressful situation, this is; one that i know far too well. believe me, it sucks. so yeah, please pray for them. and i'll try to keep you posted. thanks.

in a couple days, asher won't be able to go on roller coasters anymore. lucky for him, he's a roller coaster unto himself

lucky for him, perhaps... but does he have to take me along for the ride?!?!

so, it's been interesting since getting here. we got here yesterday afternoon, safe and sound. and since then, yeah, it's been up and down so many times i've lost count.

we got here, and first up: a holter monitor. are you kidding me?!?! honestly, i almost cried. HSC wanted one while we were in london the first time, a couple weeks ago. then they wanted one while we were in london over the weekend. now they want another one?!?! but they really only wanted the overnight data, so it's already off. i talked to the fellow, filled him in on all the details about the last few weeks (why does it feel like months?)... he wasn't surprised. and, by the way, neither was i when he refered to asher's "intermittent AV block" and "sick sinus syndrome." (remember a couple weeks ago, when i started learning about arrhythmia, and i said i had an idea of what the problem was? yeah, that was it. HAHA! i was right again!) anyway... if you look up Sick Sinus Syndrome, you'll find that it involves periods of tachycardia [fast heart rate] (which asher had a year ago) and bradycardia [slow heart rate] (which asher has now). you'll also learn that it is very rare, but mostly happens in kids who've had heart surgery, and that the only treatment is a pacemaker. so......

they sent in an EP fellow (EP = electrophysiology. the ones who are especially obsessed with lub-dubs). he asked a bunch of questions, i told him about the dizziness and the fainting spells and the brady episodes in london, and how hard it is to wake him when his HR is so low. honestly, at that, the poor guy looked like a deer caught in the headlights. then i continued with the wide range of grey asher turns. this poor guy... the fellow, i mean. he looked actually scared.

cut to rounds. the fellow hadn't had a chance to see asher yet, but he gave his little spiel anyway, including the delightful part where he said, "he didn't have any episodes last night." dr russell quickly flipped through asher's chart and said, "he was in the low 40s all night." "well, yes, but no real episodes." "but he was in the low 40s all night." a nice, gentle reminder to the cardio fellow (who looks like Balki from Perfect Strangers, btw, so from now on, that's what i'll call him, for clarity's sake) that low 40s is still considered bradycardic for a 3-year-old. so the plan is to discuss asher again with EP (which shouldn't be a problem, given the fellow's reaction last night) and get a plan in place by the end of the day, "one that we can all live with," as dr r put it.

but there have been some interesting revelations along the way:

1. our fave surgeon, dr c, reads this blog. he told me yesterday that he read the blog and that it was an easier resource for him than going through all the charts and records. so... hi, dr c! :)
2. maricor, the surgical co-ordinator, didn't want asher to have breakfast this morning "just in case." but then she changed her mind, so he's allowed to eat now. but! this little tidbit shows what everyone is thinking, and just how quickly this will happen.
3. balki said to me today that everyone knows that asher will be getting a pacer, but we still have to go through the usual channels.
4. dr c popped in to chat this morning. he said that asher looked great, though sweaty. then he looked at the monitor. and saw asher's active HR. 62. yeah. and asher's sweaty. quite sweaty, in fact. then he (dr c) said, "well, i'll talk to you later today." and i wanted to vomit.
5. maricor was walking past our door as dr c was walking out. he asked her what the plan is for asher, and she replied, "well, we're just waiting for the official word, and dr r is running a clinic today, so later on today we'll know for sure."

so guess what this all means! asher's very likely getting a pacemaker, and within the next couple days. we just need EP to say officially that this is what we're gonna do. when i hear "officially" i'll let you know.

in the meantime, please hold asher in the Light. and me, too, for that matter. this is exhausting, scary, stressful, exhausting, tiring, exhausting... too many times over the last couple of days i have nearly burst into tears just from exhaustion. i'm trying to keep my spirits up right now, and think positively, and distract myself with cheesy romance novels and stuff like that, but still... we're sitting in a  room at sick kids, and everyone knows what the next few days will bring. so please remember us.

also, please continue to remember brigid. she hasn't been having a good couple days, either, and they'll be transfusing tomorrow.

and since you're praying/whatever you do... a little boy named ethan (VSD with CHF, 6 months old) is having his OH VSD closure right now. he's got dr c, so you know he's in good hands, but the mom is very worried and scared and tired. please remember them, as well. thanks so much.

UN. FREAKING. BELIEVABLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

well, the surgery's done. i talked to the surgeon and guess what!! he actually described the surgery as, and i quote, "uneventful." i don't fully understand that yet; i'm not quite sure how "asher" and "uneventful" go together... but i'm not complaining! this has never happened before, and i can't believe it, but yeah! UNEVENTFUL!!!

we should be able to get in to see him in a little bit. they wanted to extubate him before sending him to the unit, so we have to wait a little bit. the tube that connects the inferior vena cava (IVC) to the right pulmonary vein (RPA) had to curve a little bit due to the Coles that he had in 2008, but the echo showed great flow, no kinks or folds in the tube.

so, this is very exciting. (understatement of the year. i've already celebrated with a cold can of coke and fries with gravy.) it remains to be seen how he recovers, but rest assured i will keep you posted. :)

so thank-you, everyone, for the prayers/good vibes/positive energy/whatever it is you do. it really helped. :)

and an extra-special uber thank-you to wendy and diane who came to spend the day with us here. you're amazing women; thanks so much for your friendship... and lattes. ;)

oh, this feels good!!!

i just had to post about this right now. i'm about to edit asher's story on the sidebar. and remove a couple details. in the first paragraph. go ahead, look. by the time you read this, you'll see that asher has issues with his heart, kidneys and immune system. gone will be the reference to throat and GI problems and a feeding tube.

DO YOU HAVE ANY IDEA HOW AMAZING THAT IS?!?!?!?!!?!?!?!?!

i know my friend wendy does. her son chris is also (relatively) tube-free. eating by mouth for the first time in two and a half years! GO CHRIS GO!!!!!

and the countdown continues... surgery is two weeks from tomorrow... 15 days. i don't know if i want to smile, cry or vomit. maybe some bizarre combination of the three. but right now asher is strong and healthy. the cold he's been fighting for over 2 weeks is almost gone, and he's doing well. this is the first time he's ever gone into a surgery strong and healthy. this doesn't happen!!! :)

please pray for him that he stays healthy, and that i can get everything taken care of and organized before we go. the next couple weeks are going to be pretty busy and hectic, so if you don't hear from me, assume we're doing well. and don't feel dissed if i don't contact you or hang out in the next little bit. sooooo much to do, and sooooooooo little time to do it all in. but yeah, 15 days. yikes!!!!

Here we go again....

Why am i slacking so much here?! Arg! Ah, well, i'll (try to) be brief. J

Last Monday night, while sitting at the dinner table, Asher did something he hasn't done in a while. He turned blue. And i mean blue. Almost navy blue around his nose, mouth and chin. He had a blue spell. And it lasted quite a while (almost an hour!). he wasn't distressed or anything: his breathing was fine, he hadn't aspirated anything, his mood was still chipper as ever. But still... navy blue! Yikes! So i took him to emerg.

He was put in a bed, not in a private room as usual (due to his immunodeficiency, they like to keep him separate from the rest of the kids – you have no idea the germs in emerg... no, really, you don't, and you don't want to!), so they could keep an eye on him. But Asher being Asher, he didn't want to just sit on a bed looking pretty, so he decided to wander around. And i mean wander. He took his sweet time and just meandered about. And turned blue. No real exertion, he wasn't running around or being rambunctious. He was honestly just walking. And he turned blue. So, the nurses sat him on his bed, hooked him up for some continuous sat monitoring (mid-80s the whole night, folks!) and got him a TV/DVD so he could watch cars. Even while he was blue, his sats remained perfect in the mid-80s, so the issue is not respiratory. In fact, they did a chest x-ray at one point, and doc said it was the best CXR of his she's ever seen.

Long story short(-ish), we went home. Cardio was consulted, but they said he may just have caught a draft and that caused the blue spell. Don't know how that could be the case in emerg when it happened twice, but ah well, what do i know? Funny story, though (well, heart moms will be amused, and a couple docs will be amused. The rest of you won't care.). cardio asked dr h what Asher's sats were when they were chatting, and she looked over and said, "89." Cardio said, "what?" she repeated "89." His response: "are you sure he's hypoplastic left?" yes, folks, we're sure. Definitely left. And to be honest, i think that 89 was a fluke. Asher must have just wiggled or something, because i don't remember an accurate reading of 89 in a very long time. Either way, still a funny story, no? J

And moving on....

I mentioned last week about Asher's tube site being infected, and doc putting him on keflex (an antibiotic). I had my doubts about it, but she said that if it didn't do the trick i was to bring him back in and she would prescribe something else.

Well, guess what.

It didn't work.

After a week of treatment, it wasn't any better.

In fact, it was worse. Much worse.

Of course, this was discovered after doc's office hours on a Friday. It simply could not wait till Tuesday, however. It was that bad. Very red, very oozy, very very, very gross.

And through all this, Asher's blue spells have continued. 2 or 3 a day, at least. And by Friday, he was getting short of breath throughout the day, as well. So, when i took Asher to emerg on Friday night, all this was mentioned.

So, here's the deal: emerg doc (hi, dr k!) put Asher on cipro (another antibiotic, and the one i wanted for him in the first place). She also suspects (as do i, by the way) that the blue spells and shortness of breath are linked to the infection. So, we were sent home again, and in record time this time! Our whole visit, including quite a wait for triage, was a little over 2 hours! Sign me up for visits like that anytime! J

So, there you go. Asher's health stuff up to now. Sometime in the next while, i will be posting some marvellous pics of Asher that were taken on Sunday. They're absolutely beautiful! Clint from Renaissance Studios is such an amazing photographer. I promise you'll be blown away. Those of you on my facebook may have already seen them. Breathtaking, truly. J

Oh yeah, and we had our first day with a shift nurse who was here for 4 hours today. This is the new plan that we came up with last week in my meeting with nursing and CCAC. Actual shift nurses on Mondays, Thursdays and Fridays, and then an RN visit on Sundays. I think it's going to be good. I'd been getting a little overwhelmed lately, and was having a hard time balancing all of Asher's care with being his mother, being the other kids' mother, keeping the house in order, and just everything life-related in general. So this is going to help, i think.

Also, i'm going to mention this quickly: Asher's buddy Yale (HLHS) finally got a new heart last Wednesday and he's doing marvellously! I'm going to be going up to Toronto this week to visit them, but so far, he's pink, he was successfully extubated within 3 days of surgery, and he's doing very, very well. And while we celebrate with Yale and his family, we need to remember the donor family as they grieve their loss. Pray for peace for them as they mourn, knowing that their loss means new life for Yale.

Ok, that's it for now. Blue spells, bad infection, shift nursing, amazing pics, and a new heart for Yale. Quite a ride over the last week or so! J have a great day, and i'll try to post more frequently now. J

i was so touched by this...

blithe had a hard time at school today. once we got home, she broke down and cried on the kitchen floor. i scooped her up and held her. her heart was broken, and it hurt.

i held her as she cried. then something wonderful happened. just typing this, i have tears in my eyes. (get a tissue, then come back and finish reading... got one? ok.)

asher came up to blithe, put his hand on her arm, and leaned over to hug her. he held her for a moment, then stood up and signed "sorry." it was breaking his heart to see his big sister so upset. then, he pointed and said "tin" ("train"), and looked back at blithe and said "glithe" ("blithe"), then pointed back at the train and said "tin" and back at blithe, "glithe." then he took her hand in his and led her over to the train, where he played with her.

with everything he's been through, he has learned compassion and mercy. what a special gift for all of us, to see this beauty in my boy. and tonight, what a special gift for blithe.

i don't care what any doctors tell me, asher has the biggest heart of anyone i know.

No, i didn’t forget about you...

I worked out this afternoon instead of posting. And as i worked on my glutes and pecs and biceps (which now have some nice definition, by the way J), i pondered weakness. But that's a post on another blog... which will hopefully be ready in the next couple of days. (cut me some slack, here, people! I'm a single mom with 3 kids, one of whom has his own blog, i haven't been sleeping lately – arg, hypomania – and i'm working on figuring out my life at the moment... but i digress...)

Ok, so, Asher. This is his blog, after all. Focus, heather, focus....

Here we go...

Monday in London. Right.

Ok, we started in cardio. That went nicely. No tests. Yay! Asher's had enough tests lately, i think. And we didn't even see a doc!

Ok, i lied. I spied one wandering about the clinic. Dr Weslisch. She looks nice, and she kept eyeing Asher, but we didn't speak. I'm assuming that will happen soon enough, in emerg. The winter, it is a-coming. Anyhoo...

We only talked to liz yesterday. Your basic check-up. Sats were 85% (i know, i'm ecstatic, too!), BP was 109/43. Why do i remember these numbers? I don't know. Not like any of us needs to know the specifics, unless you're a cardio who used to follow my boy and you're curious... i didn't catch the pulse. Liz cleared it all before i got to that part. I don't think liz wants the parents to know that stuff. And why should we, really? But i have learned... sometimes, you need to know. So it's best to know as many of those numbers as possible. Even if you don't know what they mean. Although,by now, much to many a cardio's chagrin, i know what they mean. Yikes! Wow, i'm tired, i'm babbling. Ok, i'll just finish this off and go to bed...

So, the appointment was left like this: we go back in January for an echo. That will be six months since his last echo (in London, anyway), and then we're aiming for july. But did you catch that? We get to go 2 months between cardio appointments! We haven't gone that long since, what? February, i think. It's been a long time, anyway. So that's cardio.

Of course, this plan is ignoring the fact that we're at the end of October, and the fall is upon us, with winter following close behind. And we all know that Asher doesn't tend to do so well in the winter. Stupid wonky immune system. (and yes, i'm still confused over immuno. I mean, really, does anyone out there understand it?! Seriously! I don't even know where to start looking for info, that's how confused i am! Arg. Ok, enough of the rant... on to the rest of the day...)

So, after cardio, Asher and i had coffee with tanna, because yale was still in the unit and Asher can't go in for a visit. But tanna came out. Yale's doing better, though he's on his way now to Toronto for a work-up for a transplant. Let's hope it all goes quickly, and he can get listed, and his wait won't be too terribly long. Check his blog for details. The link's on the sidebar.

Then, off to Interventional Radiology. Asher's tube had started leaking on the weekend, but i thought it was the syringes on Saturday. Then i checked it to be sure, and nope, it's coming out of the tube itself. So, it had to be replaced. Even the doctor didn't want to do it. She was the one who had replaced it the last time... which, you'll remember, was last Tuesday. But they check, and the tube was actually cracked. There was a quite a split there. So, it had to be replaced. That was exhausting. But, Asher's getting all his formula and meds again, so that's good. I guess when you look at the big picture, it's not so terrible... well, for me it isn't. But then, i wasn't pinned down on the table under a GIANT x-ray machine while people in masks and lead stuck a tube in my small bowel. It's the one thing Asher can't stand. Tube changes. He hates them.

So, that was our day. First good, then not so much. And of course, all day, Asher didn't stop. He walked from Tim Horton's to IR, and then ran all over the place for 45 minutes in the waiting area and surrounding hallways. I think he missed the memo that said, "half a heart. Should get tired." Is there a doctor out there who can talk to him for me? Just explain the whole concept of rest for the heart kid. Because, yeah, he doesn't get it. Timmy's to IR is a long walk. Uphill. And he did it without complaining. In fact, he made it up that hill faster than tanna and me, and we have two ventricles! What's up with that?! Sheesh! Lol

So there you go. Maybe i'll edit this in the morning, but i'm too tired for that right now, so i'm going to bed. Talk to you later! J

i have great friends

yesterday i had coffee with another heart mom... actually, another HLHS mom, to be specific. it was great. the kids were happy to see each other, too... well, they would have been, i'm sure, if they weren't suffering from heart failure and a double ear infection/tube infection, respectively. but we moms had a good time. :) anyway, i was telling her (and i've recently written on My Simple Life) about how horrible i feel with the whole food situation with asher, and the choice i have to make every mealtime. he wants food, but it could kill him, but so would a heart attack from crying if i withhold it from him. well, my friend wrote on my wall on Facebook today. here's what she wrote:

I had a thought yesterday when walking home... about how you feel a little bit of guilt when giving into Asher's wanting to eat... I was thinking there IS going to be a point when he will no longer need the tube right? and sure its dangerous for him to drink and eat...but how is he ever going to learn if you don't give him the experience.... You're a great mom!

you know, this little wall post really helped. what an encouragement on an otherwise horrid day. so, thank-you, T, for being such a great friend. and if you need anything, just let me know. i'm not far if you need me...