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
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