babywearing photos

[Anonymous]

cool, thanks!

[Anonymous]

Laura,

Love the pics. You look wonderful, and Ari is so cute! I’m suffering from sling jealousy! Maybe if I ever have another baby I’ll rack up some more slings!! hahahahahahahahahahahahahahahahahahaha

[hellbennt]

have to report that I wore Ari in the Kozy (Mei Tai)for Jonah’s field trip yesterday (so cute a bunch of 3yr olds going to a state park w/ a farm!)

[Anonymous]

Laura…. long time no see sister!! lol

I actually got an email from a gal that was looking on infantreflux.org for enerocolitis problems. She found some of my old posts I guess, and emailed me with some questions, my answer to her was long (are my answers every any other way??) lol and after I sent it I figured it would be a good “catch up” for you guys on here as well ! (Plus it saves me a LOT of typing!) LOL So I’m pasting it…. and glad to be back in the neighborhood, even briefly! My email is still annabie@cableone.net , I’d love to hear from anybody, especially my veteran buddies!! Take care guys…. I’ll poke around a bit and see if I can see how anybody’s doing! Thanks for being there for me in a REALLY tough time in my life… you guys were my lifeline! Love, Tracy AKA: Eli’smom

Hi there , I’m glad you found me on infantreflux.org, it’s been so long since I’ve been onthere that I’m amazed you did! I’m very happy to say that, as I was a daily presence there for over a year, the length of time it took to get Eli diagnosed and “healthy”. I’m glad to say we’re doing great, Eli is eating food!! He still drinks neocate one plus (up until a few weeks ago it was his main source of nutrition) but lately he’s cut WAY back (he was drinking about 40-48oz a day) today he’s only had about 6 oz so far. He’s eating whatever he wants now, although he still has eczema and rashes if he eats a lot, doesn’t seem to matter what food, more like, the amount of food in proportion to the amount of formula he’s drinking. (does that make any sense?) On the days he “mostly drinks” his neocate (meaning he drinks a lot of bottles and only eats a few bites of food) he is fine, no rashes, no eczema, etc. On the days he doesn’t drink a lot of neocate and consequently eats more food he gets “rashy”. His reactions seem to be related more to how his immune system is doing rather than what he eats. For example, when he has a bad rash or hives almost always he will come down with a fever, or ear infection, or runny nose the very next day. It’s almost like his body can handle food as long as he’s well rested, isn’t coming down with anything, and is healthy. Regardless of what the food is, he’s ok until he gets run down, then it seems that no matter what the food is, he has a reaction.

Wierd huh? LOL I’m just laughing because I could sum up his life with those two words…. “wierd huh?”. LOL

He still avoids most meats by choice, I don’t know if it’s cuz it’s protein or he just is being a picky three yr old. He LOVES eggs, so that would be wierd if meat bothered him but not eggs? Yah, I’m a wealth of information here huh? Sigh~ SOrry! I wish it were an exact science that I could understand and relay to you, but we’re still guessing here too! I do know he tested 4++ allergic to eggs at nine months, and now he eats them with no reaction as long as it’s just occaisionally… if he has them too many days in a row he does start the eczema and hives thing.

I’m sorry if I’m sounding “all over the place”. It’s just that so much has happened in our lives that sometimes I feel like I’m going in a hundred different directions! I was diagnosed with colon cancer in July of 2005, I had my colon, appendix, uterus, ovaries, cervix and about 1/3 of my stomach removed in October ’05, I’m just now considering myself recovered. (unless I get hit in the stomach, and then it takes me right back there!) So, THAT was a huge “monkey wrench” in our lives, and then because of bills and my hubby having to quit his job to take care of our six kids last year, we’ve really been “up in the air”. I started my own preschool by renovating my garage this last summer (yah, I’m crazy) so now I work three days a week at home, plus keeping track of my two boys, one’s in Kindergarten in tha am, the other is in my morning preschool class, and then he naps while the kindergartener and I do afternoon preschool. Pretty crazy huh?

I’m no expert, but I did learn a LOT with Eli, So…. I’m bruised, broken and cracked, but I am happy to share with you what I learned through Eli’s experiences!! LOL

I cannot even imagine what it must feel like to have a kid w/enterocolitis as your first…. I often think that if Eli were my first he would either have died or we’d still be baffled as to what’s wrong with him. So much of his diagnosis was me just insisting that something “wasn’t right”. I usually breast fed my kids until they were at least two, with Eli I just knew my milk was hurting him, even then it took me until he was nine months old to admit that I had to wean him. So… when I weaned him the fun REALLY began! lol That’s when we started “formula hopping” and realized he REALLY had problems. So in a way, I”m glad that I weaned him at nine months, because I think it made everything come to a head and impossible to deny that he had problems, and consequently got him diagnosed/treated/cured? in a very short time. I say “cured?” because I’m still not sure he is cured, but I know it’s a lot better than it was, and manageable. I don’t even know if he’s “outgrown” the FPIES, or if he outgrew the “allergies” or what, I just know that he can eat most of the time.

We’re so isolated medically, that he hasn’t seen a GI or a specialist since Dr. Putnam in Cincinnati. We left there in February of 2005 and he’s done beautifully. He was “neocate only” from eleven months until 27 months old. He began his own food trials at 27 months, he just kept sneaking food. He’d get into my food storage in the basement, or find a bag of doritoes in his sister’s soccer bag, whatever, he just kept finding food. SO …. after he inhaled an entire plate of scrambled eggs that his big sister left on the table while she answered the phone, we decided it was time to let him eat if he could. So that’s how our food trials started, and we began with that plate of scrambled eggs (since he didn’t react to them we figured they were ‘safe’.) And they are, in moderation. He doesn’t have any “forbidden” foods, but he also doesn’t have a large variety of foods he will eat. His usual diet is breakfast: oatmeal w/milk (the only time he will drink milk, and then he doesn’t actually drink it, just leaves it in the bowl when the oatmeal is gone) toast w/butter, or dry cereal in a bowl (which he usually just picks at) he will drink a bottle of neocate (9oz) around 10 am if he doesn’t eat much. For lunch he likes PB&J (with the crusts cut off of course) but usually doesn’t eat the whole thing (are you detecting a pattern here? ) lol or sometimes a couple of scrambled eggs. Dinner is usually whatever we’re having, but picked at… he likes green beans, corn, carrotts, lettuce etc. it’s usually the meat and potatoe, pasta or rice that gets picked at. He wont drink milk of any kind, except sometimes when he seems to “forget” and will drink chocolate milk. He’s not big on juices, or candy, not sure why, but they just don’t seem to interest him. He LOVES water, the colder the better, and of course “formeela” as he calls it. When he’s sick or run down he just drinks neocate, I can always tell when he’s getting sick cuz he says no to whatever food we offer him.

I really attribute how well he’s doing to how strongly we stuck to the “no food” thing. We started him on neocate only at 11 months, as you know, a tough time to say “no” to a baby who wants what you’re putting in your mouth! But Dr. Putnam was VERY specific in saying “absolutely NO food, of ANY kind” and we believed him. We just kept distracting him, and if he asked for food we’d offer a bottle and say “sorry buddy, hurta tummy”. He started understanding and stopped asking for food around 16 mos. For a while there people would offer him a cookie (in stores, etc>) and he’d say with a frown “no! Hurta tummy!” It was very cute. I tried REALLY hard not to feel sorry for him, I knew if I did that it would not be good for him, that he’d sense somehow that he was “missing out” and I didn’t want a kid that felt “entitled” somehow, so we treated him like he was perfectly normal, and he thought he was.

I got some flack from strangers/even some family, but it only took a couple of “reactions” when he got food for people to see how sick it made him. It was tough at times, I once had a doctor say to me “do we have to start worrying about “Munchausen’s” with you?” That was a low point, I felt REALLY angry, but luckily my own doctor was there and said to me later “If you ever get that from any doctor, just give them my number, I’ll tell them that I delivered this kid and have treated him since birth, if anyone knows he’s a freak of nature, it’s me!” LOL That made me feel much better! lol

Eli’smom2006-12-6 18:52:40

[Anonymous]

Well Tracy you write a great novel there! I’m so glad food trials are going well. Jameson is still puzzling to me at nearly 3 and your story gives me a little hope to stop fretting over every rash and maybe let him have stuff a little here and a little there and see. It’s great to hear from you and that you are feeling well. What an ordeal you have been through…

[Anonymous]

Wow Tracy…what a lot you’ve been through!!! It’s nice to read such a positive post from you and hear that you are feeling recovered (cured?) and that Eli is doing so well. My best friend’s husband went through surgery for adenocarcenoma of the appendix last March (removed appendix, spleen, gallbladder, most his colon, 1/3 small intestine, 1/2 stomach, part of pancreas, half of one lung, and part of diaphragm). I went through a lot of this with them so I know how frightening and trying of times that can be, and I’m sorry to hear that you had to go through a similar situation. You must be feeling pretty well with running a preschool now though!!

We should start a new thread for catch up of veterans’ stories. I only pop on here every now and then (more now that I’ve been diagnosed with celiac) and the last few times a couple of “old” familiar faces have appeared. It was so great to read your thorough update it would be fun to have some from others.

I hope that you and Eli (and all your family) continue to be healthy, happy, and fully of spirit!!!

[Anonymous]

Christine, thanks, I am happy to be recovered (there is never a “cured” with the genetic disease I have, but keeping a vigilant watch will hopefully let us catch any recurring cancer as early as we did the colon cancer)

My mom died at 48 from this, her brother three yrs later at 46, I’m 41 and have NO plans to repeat history, so I’m pretty proactive. (I had cancer in my colon, but elected for the total hysterectomy and the ovary removal bacause those cancers are very hard to detect and often aren’t found until stage four.) some of my doctors thought I was crazy to put myself into “insta-pause” with the ovaries gone, but I thought of it as one less organ (that I was through with anyway) to have to watch for cancer. I truely do not miss any of the organs they took out! LOL

We should start a catch up thread for veterans, I often wonder how everyone is doing, but rarely have the time to look! Yes, the preschool is keeping me busy, crazily so, but I love it. I’m having so much fun with the kids and I feel like I’m helping out with the budget a little. It’s made me be much more organized, no more “days off” or sleeping in! lol

Thanks for for your kind thoughts and words, it’s good to hear from you! (BTW-how’s palmer doing?) Now lets see if we can hear from some other “oldies”! LOL

~As always~ Tracy

[Author]

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