Thank you Brett, Francesca's mom, from www.FranklyFrankie.com for the Finding Nemo quote, "Just keep swimming." Very wise words from Dorie and very wise tube wean words, for sure. We definitely don't know our way through the trenches of tube weaning, but we're going to "just keep swimming" and I know that we'll find just what we're looking for in the end. We're being inspired and guided by Brett, Jenny (mom to Heath at www.thecrunchandthesmooth.com), Olga (mom to Zander) and Cassie (mom to Finn and Pax). ALL of these moms have weaned their tube fed child months and years ago, but continue to "hang out" on the online support groups, websites and blogs, motivating and encouraging current tube moms. So THANK YOU ALL! When I start to let me mind get the best of me, I get an email, blog comment or FB comment that reminds me of what is possible and that we're doing the right thing.
Since my last update, Reide has continued to make some real progress. For the most part, we're sticking with foods that are tried and true. Her Like List is: Campbells Vegetable Beef Soup, Campbells Chicken Noodle, green beans, Easy Mac, pickles, rice and gravy, american cheese, green bean casserole, most Gerber Graduate meals, puffs, and yogurt melts. We're offering oatmeal in the mornings which she does about 8-10 bites of, but she seems to dislike the unpredictable consistency and starts to spit out the tiny pieces of oatmeal that aren't softened. Strawberries have been hit or miss but canned pears are normally a hit in small doses. On the Try List is: broccoli w/ cheese sauce, stuffing, icecream, peanut butter, raisins, dried fruit, avocado and ranch dressing. My new project is concocting new ways to add calories and fats to her Like List using oils, fruit nectars, cream soups, 1/2 and 1/2, brown sugar and syrup.
Reide got her routine weight check on Sunday evening and had lost another 3oz. She's down to 19lb, 4oz which means she'd lost 12oz since beginning her wean 9 days prior. Her pedi is comfortable with a 5% total weight loss, which is 1 lb and we're not there quite yet. Most weans (Graz included) use 10% as the "break point" for needing to intervene. If she continues to lose, we'll look at doing an extra tube feed at night, but for now, we're living, breathing, sleeping and playing FOOD.
Christmas was SO much fun and Reide wanted to eat nearly all day! She got a Radio Flyer wagon, Pottery Barn chair, play tent with tunnel, Fridge Farm and some other here's and there's. I'm sure Christmases just get better and better as they get older!
>>>Warning: Soap Box below....skip to next paragraph if you're short on time or bored with daycare griping.<<<
My new apprehension (if you know me, you know I always have one) is sending Reide back to daycare on Monday. She'll be in her same room with the same teachers she's had for months now and they'll be THRILLED with her progress and I'm sure thrilled that they don't have to tube feed her twice a day, which had to be a pain in the butt for them......It's a pain in the butt for us and we don't have 4 other kids to keep up with, feed, change, nap, etc. Reide's new meds schedule requires that she receive two meds during the school day and being that she wasn't getting the ONE med she was supposed to be getting before we started the wean, I'm doubtful that TWO meds are going to be administered. **Big giant deep sigh** If it were seizure meds, or diabetes meds or heart meds, would they remember to give them? Yes, they would. But a appetite stimulant and reflux med??? I'm sure I already know the answer....."Yes, we're giving her meds." Then we can't figure out how we've run out of the same meds TWICE at home and they've not asked for more....then we ask to see the bottle and it's half full. Hmmmm.....you do the math, if its a 60ml bottle of Zantac and she's supposed to get 2mls before lunch, then it should last 30 days, right? NOT 4 MONTHS and still be 1/2 full! Very aggravating. Their reasoning was that the medicine was "old" because the date on the bottle said "August 18, 2010" as the fill date. My pharmacist husband told her, "Ma'am, I've got liquids on my shelves at work that are good for years! Yes, the medicine is STILL GOOD." Once again, it's the inability of most people to see Reide's feeding disorder as a Special Need. So that being said, Reide is eating anywhere from every 1.5hours to every 3 hours. The normal school schedule has lunch at 11ish and snack at 2. She will basicially want to eat twice as often as what is currently available and I'd bet my life there is no staff available to take Reide to the cafeteria to eat in between scheduled mealtimes. Finally, her school is chomping at the bit to move her to the next room. Developmentally, she needs to move because she's smart as a whip and bored to death in her current room. However, it's been made very clear to us that the children in the next room, "walk to the cafeteria, eat at a kid sized table, use utensils and drink from an open cup". The only one of these Reide may do is walk to the cafeteria. Other than that she's NOT going to sit still at a kid sized table, she's NOT going to use utensils (she doesn't know how to yet) and they'll regret giving her an open cup to drink from. I could go on and on and on, but I won't. Noone has offered us any modifications that would be available so that Reide could succeed in the next room. ok, ok, ok, ok.......Soap box is officially over.
Even regarding the soap box, we'll just keep swimming. The progress we've already seen clearly demonstrates that we're swimming in the right direction. Our little tadpole is huffing and puffing, tasting and sipping her way to success. As her mommy, I'm so thrilled with our new normal. I'm trusting Reide more and more everyday and I'm healing from the past year with every bite she takes.
I'm hoping to upload videos with the next blog.
Happy New Year everyone!
Leslie
Reide
Easter pictures 2011
Tuesday, December 28, 2010
Friday, December 24, 2010
Wean Days 5-7: A glimpse
Hooray!!! Day 5 was the day Reide really started swallowing some food. At the park, she reached her hand into the Yogurt Melts bag and pulled one out. I looked away for a second then looked back and asked my friend, where did that Yogurt Melt go? She said, "I don't know, it's not on the ground." Then I looked at Reide who had drool pouring from her mouth and low and behold she had the whole thing in her mouth and ate (swallowed) the whole thing! That was pretty much the start of some really positive changes. Reide's daddy was home with her on Wednesday while I went to work. He tried some vegetable beef soup with her and she loved it! Instead of the play by play, the overall summary is that Reide has been in her highchair eating 7 times a day for days 5 and 6 and already today (Day 7) she has been in her highchair 4 times....and it's only 10:08am. She's routinely doing well with mac-n-cheese, vegetable beef soup, chicken noodle soup, pickles, yogurt melts, puffs, green beans and most Gerber Graduate meals. She's not eating nearly enough and drinking (only water at this point) even less but it's a start. Never did I think we'd be where we are this morning. When I weighed her yesterday, on Day 6, she'd lost another 4 ounces bringing her total to 9 ounces lost since starting the wean. That's really not too bad, considering. We've somewhat developed a successful pattern of spoonfeeding her soup, or whatever the spoon-fed item is at that particular time then letting her finger-feed herself other foods after that. We are still feeding Reide 6oz of her blenderized diet through her g-tube at 10pm and doing about 8oz of Pedialyte every 24 hours, and all her meds are going through her tube still.
So that was the quick and dirty of it all.
For us, as Reide's mom and dad who have worried constantly about this process for some time now, it's almost surreal to see our little girl willingly take bites from us and then in-turn finger feed herself. We sit and watch in a stunned silence as the other feeds her or as she feeds herself. We laugh a nervous laugh when she finishes the serving we've prepared for her and the "mental gymnastics" have certainly not stopped. But it's a new kind of "mental gymnastics". Instead of planning our next 4 hours based on her tube feed, we're organizing the refrigerator and double checking the pantry to be sure we've got enough choices on-hand. We are still bound to the clock for meds, sneaking pedialyte in while she's napping and notating amount of time spent in the highchair and how long since her last "meal". But we're definitely getting a glimpse into how much simpler life is with an orally eating baby. The last few evenings haven't been spent washing tons of extension sets, syringes, feed bottles and bolus sets but instead, loading the sippy cups and baby bowls and baby plates into the dishwasher. The clock is still our guide at night: 8pm - 3oz pedialyte, 9pm - Prevacid, 10pm - 6oz feed; but I cannot imagine when Christmas is over and we're not busy with lists, wrapping, cooking, decorating, etc. what life will be like. Will we actually get to watch the Netflix movie that's been on our table since August? Or maybe I'll even get to scrapbook?! The possibilities are endless!!
I realize what a long road Reide still has before her. Luckily, patience is something we've been taught over the last year. There are still a lot of unanswered questions and too many unknowns but they are questions that only Reide can answer and unknowns that only she will reveal as time goes on. Unfortunately, I have this uneasy feeling that all of this is a "fluke"and I'm almost waiting for the "one step back" that has so often followed Reide's two steps forward. In the meantime, I am going to try not to overthink it and instead, rejoice in the progress that she has made in only a weeks time. I can't help but wonder what the next week will hold.....
Last Christmas Eve was so very different. I was a new mom to a nearly two-month old little girl who screamed in inconsolable pain and discomfort. We felt lost and helpless and desperate in a way only parents can feel. My wonderful, patient husband and I have seen the worst of each other over the past year, but we both seem to be walking to the beat of a new drum this Christmas Eve. We are confident, resourceful and loving parents to a beautiful, happy, energetic, eating toddler. We've fought all the battles up to this point but we realize that this battle is Reide's and we are giving her all the resources she needs to win.
So, from this happy and hopeful Mommy, Merry Christmas !
For us, as Reide's mom and dad who have worried constantly about this process for some time now, it's almost surreal to see our little girl willingly take bites from us and then in-turn finger feed herself. We sit and watch in a stunned silence as the other feeds her or as she feeds herself. We laugh a nervous laugh when she finishes the serving we've prepared for her and the "mental gymnastics" have certainly not stopped. But it's a new kind of "mental gymnastics". Instead of planning our next 4 hours based on her tube feed, we're organizing the refrigerator and double checking the pantry to be sure we've got enough choices on-hand. We are still bound to the clock for meds, sneaking pedialyte in while she's napping and notating amount of time spent in the highchair and how long since her last "meal". But we're definitely getting a glimpse into how much simpler life is with an orally eating baby. The last few evenings haven't been spent washing tons of extension sets, syringes, feed bottles and bolus sets but instead, loading the sippy cups and baby bowls and baby plates into the dishwasher. The clock is still our guide at night: 8pm - 3oz pedialyte, 9pm - Prevacid, 10pm - 6oz feed; but I cannot imagine when Christmas is over and we're not busy with lists, wrapping, cooking, decorating, etc. what life will be like. Will we actually get to watch the Netflix movie that's been on our table since August? Or maybe I'll even get to scrapbook?! The possibilities are endless!!
I realize what a long road Reide still has before her. Luckily, patience is something we've been taught over the last year. There are still a lot of unanswered questions and too many unknowns but they are questions that only Reide can answer and unknowns that only she will reveal as time goes on. Unfortunately, I have this uneasy feeling that all of this is a "fluke"and I'm almost waiting for the "one step back" that has so often followed Reide's two steps forward. In the meantime, I am going to try not to overthink it and instead, rejoice in the progress that she has made in only a weeks time. I can't help but wonder what the next week will hold.....
Last Christmas Eve was so very different. I was a new mom to a nearly two-month old little girl who screamed in inconsolable pain and discomfort. We felt lost and helpless and desperate in a way only parents can feel. My wonderful, patient husband and I have seen the worst of each other over the past year, but we both seem to be walking to the beat of a new drum this Christmas Eve. We are confident, resourceful and loving parents to a beautiful, happy, energetic, eating toddler. We've fought all the battles up to this point but we realize that this battle is Reide's and we are giving her all the resources she needs to win.
So, from this happy and hopeful Mommy, Merry Christmas !
Tuesday, December 21, 2010
Wean Day 4: Even the children in Africa.....
Wean Day 4 started similarly to the previous 3. Reide had her 7:30am feed, which by the written Wean Plan would be her last for the day. We had a doctors appointment at 8:30a which revealed she has fluid on her right ear and needs to see PT for her torticollis. Aka: nothing the doctor nor I am immediately concerned about. Oh and her stoma (which used to be beautiful but has been nasty since her last button change) is "fine" and we shouldn't do anything to it. Easy enough.
So Reide's oral attempts today were much better than yesterday. Again, she tasted EVERYTHING and today, actually swallowed some. At lunch and dinner, she swallowed about 10-15 pieces of Mac-n-cheese, ate about 10 Yogurt Melts and about 10 Gerber Crunchies over the course of the afternoon-evening. She drank very little of anything. If I had to estimate, I'd say she drank about 3 oz combined between my drinks and her multiple cups that are scattered everywhere. At dinner when it took her over 20 minutes of squirming in the highchair to settle down and take the first bite of mac-n-cheese, I told her the story my dad used to tell us when we didn't want our food....it was a joke, really. But he used to tell us that "even the starving children in Africa would eat this" and that we should be ashamed of ourselves for wasting so much food. The story did no good. She threw her sippy cup at me and looked at me like I was crazy. Oh well, I tried. It didn't work on us as kids either, so maybe the starving kids story should just be forgotten now.
All in all, Reide didn't eat enough or drink enough today to keep a bird alive. Dark circles are starting to show under her eyes and her energy level (although still exhaustingly high) is obviously declining. For these reasons we will continue to give her 10pm feed to her although the plan called for it to be nixed tonight. We will also continue 8+oz of pedialyte over the night to keep her safely hydrated. Brock and I have decided that if Reide's eating doesn't pick up significantly tomorrow that we'll switch appetite stimulant medications, from Periactin to Megace. Periactin, we've used before with no real success but the GI wanted us to start there. The Megace isn't typically used in children, least of all a 13month old, but is typically used in cancer patients who have lost their appetite bc of chemo, etc. But we'll switch meds if tomorrows eating merits a change.
Brock will be home alone with Reide tomorrow and I'll be at work. So pray for Brock, pray for Reide to eat and pray for me not to go crazy not having complete control over it all! (When am I going to learn?) Amazingly, Reide's demeanor remains pretty good. She's getting a little clingier and as I said her energy level is declining, but overall, she's doing really well with her mood. It's astonishing how very little food she's had over the last 48 hours and yet she continues to be our smiley, happy, energetic baby. God is good, all the time.
Please keep sending your positive thoughts and prayers our way!
Until tomorrow night, Good night!
Monday, December 20, 2010
Wean Day 3: Backpeddling
Today's only feed (breakfast at 7:30am) went well. But Reide's swallowed VERY little food today. Even if she'd swallowed 100% of what she'd put in her mouth, it still wouldn't be enough though. Play Picnic #3 went great and we had the best eater we've had yet to show Reide what it's all about....unfortunately, she couldn't have cared less. She ate less than she's eaten at the previous 2 picnics, but not sure how much her congestion is playing into this.
She's got a cold but it almost seems like she can't breath when she's trying to eat. When she's working on something in her mouth, her breathing gets really loud and heavy. Her therapist says that she CAN handle what we're giving her. I don't know. It seems like she's lost the suck-swallow-breathe coordination. I suspected that a while back when she quit eating then restarted (wayyyy back...like in June) then quit eating altogether. Back then, she'd try to suck a bottle and would take a few deep draws, then pull off and take big deep breaths and go back to the bottle. Hmmm....definitely need to get in contact with my two SP's and see what they think.
We took her for a weight check: She's lost 11oz in 48 hours. Not good. Probably going to give her some Pedialyte boluses tonight. She'll also get her 10pm feed....this is the last night she'll get this feed. But honestly, if she doesn't pick up the eating soon, I don't know how long we'll keep going. This seems crazy now that we're doing it!!! Funny that I was so sure when we started planning her wean that she could definitely do this and now I'm not sure she can, at all. Definitely feeling like we should just go to Austria and let the professionals do this. I too emotionally involved to run this show. Ahhh, finally, I admit it: I'm in over my head. Reide's problems are bigger than me, bigger than the resources available to me.
You know, I told someone today (can't remember who, now, bc the day is just all running together) that if Reide were still on formula then this would be easier. But on BD, she's grown, flourished, gained weight and had the longest "healthy" stint she's ever had. She generally doesn't retch/vomit her BD and she hops out of the high chair happy and like nothing ever happened. Oh, AND we've been able to cut out her 2am feed and she's STILL GAINED!!! On formula, she would start the reflux cough about 1/2 way through a feed, then be uncomfortable and vomit after nearly every feed. So if the alternative was less attractive then it'd be easy to do this, but the bottom line is that the alternative was working......
So, I'm obviously trying to talk myself out of the wean. I'm trying to rationalize quitting before we've really even begun. I've got to get to the SP's tonight though, so, until tomorrow....
Sunday, December 19, 2010
Wean Day 2: Too tired to entertain
Wean Day 2 was actually rather uneventful. Reide was tube fed at 7:30am, 11:30 am and 10pm. So, she lost her 2:30p feed today after having lost her 6pm feed yesterday. Reide tasted at every feed today, which is unusual for her. It's usually hit or miss and never a 100% adventurous day, but today was good, in that respect.
We had a Play Picnic at Reide's Nana and BigDog's house at around 2:30p with my sister's little boy, Landry and my brother's little girl, Ava. Noone really ate too much but a HUGE mess got made, for sure. It took Reide about an hour, again, to eat anything, but eat she did....at least a little. She picked up the bowl that had some avocado pieces in it and walked around eating a few bites. Then she took a taste or two, then a bite or two of a meat stick, then onto the cheese from the Lunchable and the cheese stick. Total eaten by mouth for the day was likely around 3 tablespoons but it's a start, right?
Ok, so this post is going to be lame because I'm just pooped! Reide slept like crap last night (I don't suspect it's wean-related) and now we're just exhausted. We'll see the doctor at some point tomorrow and get a weight on her and check some untreated torticollis, have a Play Picnic at 10am with some good eaters then back out to Nana and BigDog's for some root veggies and ham....yum! Tomorrow we have to start really counting volume drank, volume eaten, pee diapers and watch for behavioral signs that we'll need to intervene.
I promise more entertainment tomorrow.....soooo......tired.
Good night friends!
We had a Play Picnic at Reide's Nana and BigDog's house at around 2:30p with my sister's little boy, Landry and my brother's little girl, Ava. Noone really ate too much but a HUGE mess got made, for sure. It took Reide about an hour, again, to eat anything, but eat she did....at least a little. She picked up the bowl that had some avocado pieces in it and walked around eating a few bites. Then she took a taste or two, then a bite or two of a meat stick, then onto the cheese from the Lunchable and the cheese stick. Total eaten by mouth for the day was likely around 3 tablespoons but it's a start, right?
Ok, so this post is going to be lame because I'm just pooped! Reide slept like crap last night (I don't suspect it's wean-related) and now we're just exhausted. We'll see the doctor at some point tomorrow and get a weight on her and check some untreated torticollis, have a Play Picnic at 10am with some good eaters then back out to Nana and BigDog's for some root veggies and ham....yum! Tomorrow we have to start really counting volume drank, volume eaten, pee diapers and watch for behavioral signs that we'll need to intervene.
I promise more entertainment tomorrow.....soooo......tired.
Good night friends!
Saturday, December 18, 2010
Wean Day 1
December 18, 2010 has been a long awaited day; Reide's tube wean started today. We started the day like any other....her waking up when I was tubing her some water at 6am and immediately being ready to play! Then we did her 7ish a.m. feed which went great! (LOVE her blenderized diet!) Then we went for a starting weigh in at my office. Reide weighed in at a lovely 20lbs 0oz....she's NEVER weighed anything that started with a "2"! (Again, LOVE her blenderized diet)
We had her first Play Picnic with Reide's sweet friends Ava, Jackson and Emma who are the kiddo's of my two best friends. That was a great way to kick off the tube wean. Amber brought McDonalds pancakes, sausage, eggs, biscuits and hashbrowns for the kiddos and we all sat on the floor and talked and played. Reide stayed a good distance away from the food fun for quite a while. She'd come over and visit but mostly kept her distance. Finally, after about an hour and once most everyone had abandoned the food, Reide went over and had about 1/8 of a breakfast sausage. Soon after that, I had to tube her 11a meal (lunch) to her and she fiddled with some apple pieces while I did that.
Reide's 2:30p feed was uneventful....tasted some Veggie Straws and drank some water but not much else.
Reide's 6pm feed (dinner) was the first feed nixed. We chose to go somewhat in reverse (from dinner to breakfast) because her best oral attempt has almost always come at dinner time. Tonight, she started to get hungry just before 6pm and the dinner I was cooking wasn't done yet, so she was offered a Gerber Graduate meal of chicken/veggie pasta in a creamy sauce with green beans and some Club crackers. She did some tasting and some eating but kept pulling the decent sized pieces out of her mouth or wiping them off her tongue. She was pretty ravage about her water cup during dinner though. After about 25 minutes, she was losing patience so I let her out of her chair. She played for about an hour then got very, very fussy....crying for no reason and then the crying would escalate to hysterics within about a minute. Finally, bathtime and then bedtime. Brock just fed her 10p feed to her, so hopefully a decent nights sleep is on its way.
How did it feel for me? Let's just say I nearly caved. Yep, that's right, 2 hours of: in the highchair, out of the highchair, holding onto my legs and crying, falling on the floor and crying, back in the highchair, crying hysterically in the highchair and throwing all food, utensils, plates and cups onto the floor, then having her smack at my hand as I tried to offer her a bite, back out of the highchair, then oh, yes, into the bath tub......ahhhhhh finally, Daddy's home from work. Thank GOD for Daddy!!!! It took both of us two hours to clean up the days dishes, food, cups, meals and everything else.
Tomorrow: Day 2....she'll lose her 2pm feed along with her 6pm feed.....Oh Lordy....I'm gonna need medicated before this is all over with!
Wednesday, December 15, 2010
Stolen
I stole this blog, yes, stole it, then changed names where necessary and reposted. I feel like a Hallmark movie or a crime thriller where there's a disclaimer about names being changed or left out to protect idenitiy, but that's not the case here. It just "fit" EXACTLY how I feel and how WE are. This mom is an excellent writer and I hope she won't mind me stealing from her! Here's the stolen material:
Community
It's really strange lately. I feel like this small community of tubie moms are coming together and really trying to help each other out. Lots of blogs have started, awareness sites have been launched, and I'm starting to see some familiar names pop-up on various sites. We're a small group, but we're strong!
Most of these families have stories that far exceed ours in severity. Many of these children have life-long disabilities and conditions that require, literally, around the clock constant care. I'm also finding that most of these tubie kids have tubes as a result of their primary condition, with the tubes put in as a result of not being ABLE to eat.
But I think what strikes me the most is how STRONG these moms are. I like to think I'm strong and determined, but I'm not sure I would be in some of these more dire situations.
I CAN say that all of us moms are tired and weary. We trudge on knowing that tomorrow probably isn't going to be much better or easier...in fact, for many of us, we know tomorrow might actually be worse. We go to bed exhausted knowing that it will all still be there for us to deal with in the morning. For some moms (I'm thankfully not in this group), the care continues on hour after hour throughout the night as well. Year after year passes and the intensive care continues.
Every parent with a special needs child goes through what I like to call "mental gymnastics". It is a constant balancing act that our brains go through on a daily basis. Each mom's dialog is different. Mine goes something like this:
If I feed Reide 6 ounces now, I can do the next feeding at 1pm, but wait...that will interfere with nap, so...I could do a half feeding before nap and half after nap, but then I'm too close to the mid-afternoon feeding which messes up the before bed feeding and I can't put her down on a full stomach, wait...do I even have enough formula to make it through today? gotta make more, do I have enough fat in this blend? did I put in the multi-vitamin yesterday? I need another Omega-3 source, now an orange veggie, a green veggie, OK...more green veggies, is that too much spinach? wait...no more Vitamin A, skip the cod liver oil, did I oil my syringe, that tube doesn't look very clean, do I have enough formula while we're out? should I feed her now or wait until we get home? OK...I'll do it now so it can settle a little before nap...OH NO! please don't throw-up!
For most parents, life eases-up on you as your children grow older. We raise them to be independent productive members of society. We know that they will leave one day and have a life beyond us. Get married, have families, excel in careers. But for some families, this will not be their reality.
As far as Reide is concerned...we don't have any reason to believe she won't be in the "independent productive member of society" group. However, there is always the constant nagging feeling from not knowing what's "wrong" with her. Does she have some sort of a condition that is going to amplify? Will it be something that will have life-long consequences? We hope that her hunger drive will "wake-up" one day and we can all have a good laugh and some fun jokes about the "tubie years", but I'm not sure I really believe that will happen. I think that something is truly wrong with her, but because she is so young, I'm not sure we've seen the full impact of what it might be.
At this point, only time will tell how this saga is going to turn out. In the meantime, we love this amazing little kid and it's hard to imagine her being "normal".
It is what it is...and it's OK.
Most of these families have stories that far exceed ours in severity. Many of these children have life-long disabilities and conditions that require, literally, around the clock constant care. I'm also finding that most of these tubie kids have tubes as a result of their primary condition, with the tubes put in as a result of not being ABLE to eat.
But I think what strikes me the most is how STRONG these moms are. I like to think I'm strong and determined, but I'm not sure I would be in some of these more dire situations.
I CAN say that all of us moms are tired and weary. We trudge on knowing that tomorrow probably isn't going to be much better or easier...in fact, for many of us, we know tomorrow might actually be worse. We go to bed exhausted knowing that it will all still be there for us to deal with in the morning. For some moms (I'm thankfully not in this group), the care continues on hour after hour throughout the night as well. Year after year passes and the intensive care continues.
Every parent with a special needs child goes through what I like to call "mental gymnastics". It is a constant balancing act that our brains go through on a daily basis. Each mom's dialog is different. Mine goes something like this:
If I feed Reide 6 ounces now, I can do the next feeding at 1pm, but wait...that will interfere with nap, so...I could do a half feeding before nap and half after nap, but then I'm too close to the mid-afternoon feeding which messes up the before bed feeding and I can't put her down on a full stomach, wait...do I even have enough formula to make it through today? gotta make more, do I have enough fat in this blend? did I put in the multi-vitamin yesterday? I need another Omega-3 source, now an orange veggie, a green veggie, OK...more green veggies, is that too much spinach? wait...no more Vitamin A, skip the cod liver oil, did I oil my syringe, that tube doesn't look very clean, do I have enough formula while we're out? should I feed her now or wait until we get home? OK...I'll do it now so it can settle a little before nap...OH NO! please don't throw-up!
For most parents, life eases-up on you as your children grow older. We raise them to be independent productive members of society. We know that they will leave one day and have a life beyond us. Get married, have families, excel in careers. But for some families, this will not be their reality.
As far as Reide is concerned...we don't have any reason to believe she won't be in the "independent productive member of society" group. However, there is always the constant nagging feeling from not knowing what's "wrong" with her. Does she have some sort of a condition that is going to amplify? Will it be something that will have life-long consequences? We hope that her hunger drive will "wake-up" one day and we can all have a good laugh and some fun jokes about the "tubie years", but I'm not sure I really believe that will happen. I think that something is truly wrong with her, but because she is so young, I'm not sure we've seen the full impact of what it might be.
At this point, only time will tell how this saga is going to turn out. In the meantime, we love this amazing little kid and it's hard to imagine her being "normal".
It is what it is...and it's OK.
......Stolen from the Kelley Girls Blog at http://thekelleygirls.blogspot.com
The Wean Plan....less than 72 hours to go....
Please go to http://www.thecrunchyandthesmooth.com/ to read a wean that we've studied for a few months now. Reide's wean will hopefully go in a similar fashion.
As a mom, I am hopeful (but trying not to get my hopes up); I am fearful (but trying not to let it show because Reide is very perceptive); I am apprehensive (but promising to stick to the written plan as my "back bone" during all this. Lastly, I can't help but be sad. I know, its a weird feeling to have....sad....but it's not how I thought I'd spend Reide's second Christmas. But I can tell you, for certain, that if this works....if she weans....if she begins to eat by mouth for the first time in almost 9 months....I will be ELATED!!! It would be the BEST Christmas gift EVER!!! Either way, it's a Christmas I won't soon forget.
I need moms willing to come over (or invite us) for "Play Picnics" which are supposedly instrumental to successful tube weans. We would ideally like to have Play Picnics every day of Reide's tube wean, either at 10am or 3pm. Play picnics are where food (all kinds, textures, flavors, etc.) is readily available and that anything goes, including getting dirty, throwing food, putting food in toys, in my mouth, in your mouth, in your childs mouth and there is no pressure; no pressure to eat, no pressure to play, no cheering about food, no pretending to eat food, no yum-yums or no-no's. So, if your interested, please text me: 318-393-7329 dates and times, my house or yours.
Lastly, please be praying. This will be a very trying time for Reide but also for Brock and I. How we go about this and how we react along the way will be pivotal to Reide's success. We know that God's hands are ALL OVER this already, but we strongly believe in the power of persistent prayer and we know that with many asking, maybe one (Reide) can recieve a miracle. We pray daily that God will heal her precious body and her mind so that she knows that food won't hurt and that she can trust again. Thank you for your prayers and support!
And you know....I'll update often. I'm hoping daily, but we'll see.
To Atlanta and back in less than 48 hours...
After having major issues with our local pediatric gastroenterologist, we were finally granted insurance approval to see the "experts" at the Children's Center for Digestive Health Care in Atlanta, GA (http://www.ccdhc.org/). We drove nearly 4 hours to Dallas on Monday, December 6th to catch our flight for Atlanta, had Reide's appointment at 10am the following morning and then drove back to the airport to catch the flight back to Dallas then drive 6 hours (don't ask) home. Whew!
At CCDHC, we saw Dr. Glen Lewis who shares Brock's alma mater, University of Louisiana at Monroe. We had 14 (yes 14) Ped GI's to choose from, but after reviewing his profile (and seeing Border Collie's in the background), we decided to choose him. He had done a thorough review of Reide's medical history (reflux, oral aversion, mild failure to thrive, Baylor's Feeding Program, ng tube, g-tube, g-tube falling out, Nissen fundoplication, formula and volume intolerance) so we didn't have to spend too much time reviewing her past and instead got to focus on the current issues and future plans.
Dr. Lewis was pretty clear that he didn't agree with the surgeon doing a fundoplication on Reide, but since she'd adequately stretched the fundo already (proven by her ability to vomit with little effort, now) that he was satisfied that taking it out/reversing the fundo wasn't necessary. We had previously been told by our local GI that reversing a fundo was impossible. In the discussion of Reide's retching, I had told him my understanding that it was "the most painful thing" people who could verbalize pain report having ever felt. He corrected me and said, "I'd say painful is an understatement.....I think misery is more like it." Wow! If I didn't feel sorry for Reide before, there was no mistaking it now. Dr. Lewis approved of her current meds, approved of our plan to wean her off her feeding tube, approved of the blenderized diet I was doing for her and was most encouraged by the MRI of Reide's brain that was done previous to her g-tube surgery and said that her brain was normal and she is hitting and exceeding her developmental milestones. He added two appetite stimulants for during her wean and said we could contact him by phone or email during the wean for any questions that may come up. Nice guy, huh?
At first I felt disappointed that he didn't do anything. After a few minutes I thought to myself, "Hey, he thinks we're doing an excellent job. He's on-board with EVERYTHING we're doing and everything we plan to do." No problems with that!
At CCDHC, we saw Dr. Glen Lewis who shares Brock's alma mater, University of Louisiana at Monroe. We had 14 (yes 14) Ped GI's to choose from, but after reviewing his profile (and seeing Border Collie's in the background), we decided to choose him. He had done a thorough review of Reide's medical history (reflux, oral aversion, mild failure to thrive, Baylor's Feeding Program, ng tube, g-tube, g-tube falling out, Nissen fundoplication, formula and volume intolerance) so we didn't have to spend too much time reviewing her past and instead got to focus on the current issues and future plans.
Dr. Lewis was pretty clear that he didn't agree with the surgeon doing a fundoplication on Reide, but since she'd adequately stretched the fundo already (proven by her ability to vomit with little effort, now) that he was satisfied that taking it out/reversing the fundo wasn't necessary. We had previously been told by our local GI that reversing a fundo was impossible. In the discussion of Reide's retching, I had told him my understanding that it was "the most painful thing" people who could verbalize pain report having ever felt. He corrected me and said, "I'd say painful is an understatement.....I think misery is more like it." Wow! If I didn't feel sorry for Reide before, there was no mistaking it now. Dr. Lewis approved of her current meds, approved of our plan to wean her off her feeding tube, approved of the blenderized diet I was doing for her and was most encouraged by the MRI of Reide's brain that was done previous to her g-tube surgery and said that her brain was normal and she is hitting and exceeding her developmental milestones. He added two appetite stimulants for during her wean and said we could contact him by phone or email during the wean for any questions that may come up. Nice guy, huh?
At first I felt disappointed that he didn't do anything. After a few minutes I thought to myself, "Hey, he thinks we're doing an excellent job. He's on-board with EVERYTHING we're doing and everything we plan to do." No problems with that!
Tuesday, November 23, 2010
Blenderized Diet, Week 1: Welcoming Momma Bear
After doing quite a bit of research and finding the infinitely helpful Yahoo Group called Blenderized Diet, I convinced Brock to get on board and give doing a Blenderized Diet (BD) for Reide a try. When I first learned about BD, my gut told me, "This is RIGHT for Reide!" but after talking to her occupational therapist, we thought waiting until after her tube weaning attempt would be best, as to not change too many factors prior to her tube wean. Also, the dietician who has voluntarily helped with Reide was completely unfamiliar with BD and suggested I contact Baylor's dietician to see if she would help us. So, I contacted Christine, the Baylor dietician who we have kept in touch with since Reide's discharge from there and low and behold, she's VERY interested in BD and actually had just ordered the Marsha Dunn-Klein book on BD....cool, very cool! So, thinking I had time to continue my hunter-gatherer phase of info collection on BD, I searched and read, searched and read info on BD.
Reide's intolerance from her Neocate Jr. formula continued to worsen and on Tuesday, November 16 after Reide had vomited every single feed for over 24 hours, I just couldn't do it anymore. There she sat, in her highchair watching Baby Einstein, tasting a ton of food and even using her spoon to lick baby food and I'm staring at a cup of formula like it has cancer or something and I couldn't do it. I just couldn't do it. I thought, "She's doing everything we're asking of her and I'm going to make her puke. No, I won't do it anymore. We have another option." I stood up right then and made a quick blend of baby food and pushed it in. No problems, no funny faces, no reflux cough, no vomit. She was actually HAPPY after being fed.
So, I've started doing two blends, one sweet, one savory that together last around 3 days. I've included my "recipe". It's nothing special. Most BD people have a Vitamix blender that costs around $500, but we're waiting until after the wean attempt to see if A. She's going to eat enough on her own or B. We need to buy the blender and keep doing BD for Reide to supplement her oral eating.
Reide was weighed today after 7 days on BD. Note: Reide had not gained one single ounce in a month and a half. Today, she was up 10oz in 8 days....YIPPEE!!!! Dr. Pistorius (her pedi) also ordered a Complete Metabolic Panel (CMP) on her, so they did a blood draw for that. The results showed that her diet is fine and all levels were normal for a child her age.
My intuition that BD was right for Reide has been confirmed. My intuition that WE, Reide's PARENTS know what's best for Reide has been confirmed. Reide's therapist said, "I'm glad to see your Momma-bear is coming out. Good for you." Yes, I'd say Momma Bear is here to stay. My confidence our choices and abilities as Reide's parents is unwavering. I'm a different person today than I was even 3 months ago, and I'll continue to embrace the clarity that I'm experiencing.
We travel to Atlanta on December 7th for Reide's appointment with a GI specialist, so that will likely consume the next post.
Happy Thanksgiving ALL!
Recipe:
Savory Blend - makes approx 39oz; all baby food is Beechnut brand
4 - 2.5oz jars beef with broth
4 - 2.5oz jars Stage 1 veggies (I try to use 2 jars of green veggies and 2 jars of orange/red veggies)
2 - 2.5oz jars Stage 1 fruit
1 whole avocado
2 tbsp wheat germ
1tbsp flaxseed oil
1.5 tbsp olive oil
2 tbsp agave nectar
1 tsp powdered probiotic
1/4c Beechnut baby oatmeal
2oz - 20cal/oz juice
2oz - 25cal/oz Gerber yogurt juice
This came out to 34.3 calories/ounce.
Sweet Blend - makes approx 34oz; all baby food is Beechnut brand
6 - 2.5oz fruit (I usually do 4 jars of pears/applesauce/bananas and 2 jars of prunes)
3/4c Beechnut baby oatmeal
2oz coconut milk
4oz goats milk - concentrated, undiluted
1tsp powdered probiotic
1tbsp olive oil
1/2 tbsp flaxseed oil
1 tbsp wheat germ
2 egg yolks
4oz - 20cal/oz juice
This came to 32.25 cal/oz.
We normally do 5oz of the sweet blend at breakfast and dinner and 5oz of the savory blend at lunch and snack. Basically, for every 2 savory blends, we give one sweet blend.
Her BRAT blend that I did today bc Reide had a mild stomach bug that her poor cousin, Landry had was as follows:
1 jar applesauce bf
1 jar bananas bf
3 tbsp rice cereal
5oz pedialyte
We did 5oz every 3 hours and she handled it like a champ!
Reide's intolerance from her Neocate Jr. formula continued to worsen and on Tuesday, November 16 after Reide had vomited every single feed for over 24 hours, I just couldn't do it anymore. There she sat, in her highchair watching Baby Einstein, tasting a ton of food and even using her spoon to lick baby food and I'm staring at a cup of formula like it has cancer or something and I couldn't do it. I just couldn't do it. I thought, "She's doing everything we're asking of her and I'm going to make her puke. No, I won't do it anymore. We have another option." I stood up right then and made a quick blend of baby food and pushed it in. No problems, no funny faces, no reflux cough, no vomit. She was actually HAPPY after being fed.
So, I've started doing two blends, one sweet, one savory that together last around 3 days. I've included my "recipe". It's nothing special. Most BD people have a Vitamix blender that costs around $500, but we're waiting until after the wean attempt to see if A. She's going to eat enough on her own or B. We need to buy the blender and keep doing BD for Reide to supplement her oral eating.
Reide was weighed today after 7 days on BD. Note: Reide had not gained one single ounce in a month and a half. Today, she was up 10oz in 8 days....YIPPEE!!!! Dr. Pistorius (her pedi) also ordered a Complete Metabolic Panel (CMP) on her, so they did a blood draw for that. The results showed that her diet is fine and all levels were normal for a child her age.
My intuition that BD was right for Reide has been confirmed. My intuition that WE, Reide's PARENTS know what's best for Reide has been confirmed. Reide's therapist said, "I'm glad to see your Momma-bear is coming out. Good for you." Yes, I'd say Momma Bear is here to stay. My confidence our choices and abilities as Reide's parents is unwavering. I'm a different person today than I was even 3 months ago, and I'll continue to embrace the clarity that I'm experiencing.
We travel to Atlanta on December 7th for Reide's appointment with a GI specialist, so that will likely consume the next post.
Happy Thanksgiving ALL!
Recipe:
Savory Blend - makes approx 39oz; all baby food is Beechnut brand
4 - 2.5oz jars beef with broth
4 - 2.5oz jars Stage 1 veggies (I try to use 2 jars of green veggies and 2 jars of orange/red veggies)
2 - 2.5oz jars Stage 1 fruit
1 whole avocado
2 tbsp wheat germ
1tbsp flaxseed oil
1.5 tbsp olive oil
2 tbsp agave nectar
1 tsp powdered probiotic
1/4c Beechnut baby oatmeal
2oz - 20cal/oz juice
2oz - 25cal/oz Gerber yogurt juice
This came out to 34.3 calories/ounce.
Sweet Blend - makes approx 34oz; all baby food is Beechnut brand
6 - 2.5oz fruit (I usually do 4 jars of pears/applesauce/bananas and 2 jars of prunes)
3/4c Beechnut baby oatmeal
2oz coconut milk
4oz goats milk - concentrated, undiluted
1tsp powdered probiotic
1tbsp olive oil
1/2 tbsp flaxseed oil
1 tbsp wheat germ
2 egg yolks
4oz - 20cal/oz juice
This came to 32.25 cal/oz.
We normally do 5oz of the sweet blend at breakfast and dinner and 5oz of the savory blend at lunch and snack. Basically, for every 2 savory blends, we give one sweet blend.
Her BRAT blend that I did today bc Reide had a mild stomach bug that her poor cousin, Landry had was as follows:
1 jar applesauce bf
1 jar bananas bf
3 tbsp rice cereal
5oz pedialyte
We did 5oz every 3 hours and she handled it like a champ!
Thursday, November 18, 2010
The dreaded first post.....
So, over the last 12 months, I've been asked by several people (believe it or not) to start a blog so that our friends and family can keep with Little Miss Sassy Pants and her medical/feeding/tube stuff. I read other peoples blogs and think, "Nothing I have to say will be interesting or stimulating" but over time, I've felt that I'm actually HELPING alot of fellow tube moms with the things I've learned in my quest for a cure, the unbelievable amount of internet hours I've spent learning, digging, searching and the common sense approach that I *try* to take towards Reide's health issues.
I had someone tell me once, while laughing/ridiculing me for giving Reide "paci time", that we were "ridiculous with Reide"..... THEN, I smiled, felt embarrassed, questioned my abilities as a mother, questioned Reide's temperment as abnormal.....NOW, I'm certain, beyond the shadow of a doubt, no questions asked, that I've always given my daughter everything she needed, that I'm a fabulous mother. NOW, if someone were to make the same gutsy comment to me, they'd be the ones leaving with their dignity disturbed and their abilities in question. I've gained/learned unbelievable strength, stamina, knowledge and perseverance over the last 12 months.
So, what's next? Well, we'll take Reide to Atlanta, GA to the Children's Center for Digestive Health Care (http://www.ccdhc.com/) on December 7th for a consultation and see if they have something to offer her and her poor tummy. We're curious to know the state of her Nissen, whether her reflux is still as bad as we think it is and what our next move is. We're also planning a home-based, Graz-style (http://www.notube.at//) tube wean beginning December 17th. We've got so much riding on her wean....that deserves a "Post" of it's own.
Till then.......
Goodnight.....the 2am tube feed awaits me in 2.5 hours.....*sigh*
I had someone tell me once, while laughing/ridiculing me for giving Reide "paci time", that we were "ridiculous with Reide"..... THEN, I smiled, felt embarrassed, questioned my abilities as a mother, questioned Reide's temperment as abnormal.....NOW, I'm certain, beyond the shadow of a doubt, no questions asked, that I've always given my daughter everything she needed, that I'm a fabulous mother. NOW, if someone were to make the same gutsy comment to me, they'd be the ones leaving with their dignity disturbed and their abilities in question. I've gained/learned unbelievable strength, stamina, knowledge and perseverance over the last 12 months.
So, what's next? Well, we'll take Reide to Atlanta, GA to the Children's Center for Digestive Health Care (http://www.ccdhc.com/) on December 7th for a consultation and see if they have something to offer her and her poor tummy. We're curious to know the state of her Nissen, whether her reflux is still as bad as we think it is and what our next move is. We're also planning a home-based, Graz-style (http://www.notube.at//) tube wean beginning December 17th. We've got so much riding on her wean....that deserves a "Post" of it's own.
Till then.......
Goodnight.....the 2am tube feed awaits me in 2.5 hours.....*sigh*
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