Persistence and Faith

img_3868Persistence is the word of the year. Or lifetime? I don’t know, but it’s a word I’m hanging onto right now.

At the beginning of July 2016, we visited with River’s GI, Dr. P, and we all made the decision together to start another wean. We had been working really hard for a long time to get a good healthy weight onto her, and it was finally showing. She had “skyrocketed” up to about the 13th percentile, after hanging out at the 10th for many years. The 10th percentile is her norm, and it’s not concerning for her to be at the 10th, so going up to the 13th may or may not be her norm, but we had some good wiggle room!

We are now in the 4th month of this trial wean. I still consider it a trial because we just never know when it’s going to be time to bring it to end and go back to tube feedings. In the midst of these last four months I’ve seen her weight continually and gradually go down, and it’s heartbreaking and difficult to see. Everyday I fret over her food, try and add sneaky extra calories to anything she eats if possible. She’s on a large amount of grains and dairy and fat, which is also very frustrating and disheartening. But it’s what she likes, will eat, and is high in calories. Not too mention the sugar! She gets stuff like ice cream almost everyday.

It feels counterintuitive, and it feels just plain wrong at times. Especially as I stand by, eat my vegetables and quinoa, as she either goes to town or picks disdainfully at her creamy food. I’m a vegetarian, and she likes meat. The RD wants me to give her more meat! River likes things likes ham and bacon. They say it adds calories and iron. Some days I feel like everything I do for her is just wrong. Like I’m failing her over and over again. It goes against my beliefs about food and nutrition. It goes against everything I’ve been taught about healthy eating. I’m bombarded daily with information. Don’t eat meat, don’t eat dairy, do eat vegan proteins, do eat all the vegetables except the starchy ones, do eat clean, do eat organic, don’t eat saturated fats, do eat unsaturated fats, get vitamins from your food not from supplements, don’t forget your probiotics, etc… I have a very “hate” relationship with food, let’s just put it that way. I’m sure many tubie parents out there could agree to that sentiment. Feeding therapy, registered dietitians, everyone and their dog’s advice, and just cultural and popular beliefs about food, will completely run you amok till you don’t know what the hell to do anymore. I have a sense I need to change my relationship with food here.

Some days she eats like a champ! So what do we do? We usually try and replicate the same foods the next day, or spend gobs of money on those things and try to feed them to her again, all the time. It backfires generally. One day she inhales alfredo, the next day picks at it. One day asks for and inhales peanut butter with apples, the next day acts as if that was never something she liked! Ok ok, that’s probably a typical 6 year old kid thing. But it really messes with her weight progress. It changes day to day what she is willing to eat, and how much.

This, and her insomnia, finally drove us to a child psychologist. So we struggle most days with her eating. We struggle just as hard with her sleeping. Her sleep, as it’s always been, has been nothing less than torturous for us parents. I was spending hours in the evening to get her to sleep, then I’d go right to bed after her, to always be awoken in the middle of the night, every single night. (Side note: If I don’t wake up ass early in the morning I never get a minute of the day without my kids, so I suggest, even if it’s hard, wake up early to escape your kidlets even if it’s just for a little bit.) Not to mention my poor husband who has to get up even earlier than me to go to work. He’s basically a zombie and coffee addict. He, unfortunately, cannot sleep through any of this, and has some level of insomnia himself.

So onto the psychologist. Who is wonderful btw!! I can’t believe we hadn’t seen one sooner. Like really. Go see one if you think it’ll help your family and your kiddo’s progress. Anyway he gave us basically two plans to start with. A new bedtime routine, and an eating routine.

img_3883Sleeping plan goes like this: it’s called the “Check-in” method or something. You take your kiddo to bed, at a set time, every night. You put them to bed in a short simple manner, for us that’s one book downstairs with everyone, one book upstairs in bed, then a short and sweet back rub or quick kid’s meditation(with some Reiki from me as well). Also part of the plan, Dad must participate, according to the doc, we had to get her off her reliance on me, and bring Dad back into the mix. He puts her to bed several nights a week. Then the crucial part: you do the check-ins at regular, reliable intervals. We started with 2-3 minutes when she was frantic, when she was relaxed 5-6 minutes. At first sometimes we had to hover just on the stairs to her bedroom because she would scream and cry and try to come downstairs. So we would have to go right in, soothe her, and try to leave as quick as we could. I had to keep a log of this, every night, to see our progress. The first week was hell, not gonna lie. She screamed and cried and fought this hard. She rarely left her room, but would try and make a huge racket to get us back in.The Doc said totally normal to experience this. We try and be as “peaceful parenting” as possible, and this was hard for all of us. We just had to reassure her and show her we were sticking with the plan. We constantly praised her if she was remaining calm during those times. We did no rewards or sticker charts or anything, those methods have never worked for her. After about 5 days she began getting it. She started calming down and patiently waiting for us during check ins. Check-ins have to be a max. of 1 minute.

My vision board for bedtime!
My vision board for bedtime!

We’ve been going at this over a month now. We’ve managed to progress with her participation. She “participates”. She waits calmly, and is learning to fall asleep without our presence in the room. BUT we still haven’t succeeded in it translating to truly know how to fall asleep. She still takes an hour most nights to finally fall asleep. With me or my hubby walking our aching knees up and down the stairs, back and forth, back and forth. The doc told us “studies show” that this is successful when the child can drift off to sleep within 10-20 minutes of being “put to bed”. Well I’ll believe it when I see it. I’m almost at tearing my hair out stage with this. But this is still better than what we were doing before….sacrificing my sanity and self by laying with her for that long hour and coaxing her to sleep. Now my son and I watch Doctor Who during this hour, and I just miss out on bits and pieces during my check-ins!! Much better! But still frustrating because I feel as if I’ve been trying to teach her to sleep for 6.5 years. SOOOOO the clincher on this is that it’s supposed to translate to the middle of the night insomnia, and it hasn’t and it won’t, until we reach that 10-20 minute drift off after bedtime milestone. We still all suffer from River’s insomnia. The insomnia is “supposed” to get better when she truly learns to fall asleep on her own. When will that happen?????????? I can’t wait for us all to have a new joyful relationship with sleep here.

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Examples of my logs

Eating plan: a strict every two hours of eating, no snacking in between. So we start at 10 am and go every two hours with food. Snack or meal. Just every two hours. When we’ve followed this she does eat more in a day. I also charted this for 3 weeks to see it work or not work. It seemed to prove very useful. He also gave us a bunch of other suggestions about letting her choose her portions, not overwhelming her with large portions – wait for her to ask for more, and helping her listen to her body signals especially if she asks for food between times, and we tell her she must wait to eat, hoping for her to build her hunger. This is all generally to get her more responsive and knowledgable about her hunger signals. Sticking to this strict schedule has proven to be difficult. I try and bring snacks when we leave the house and only feed her at the right times. Some days get completely out of hand and the schedule gets lost. When this happens I can see how she doesn’t get enough to eat and how it isn’t helping her hunger signals. Which means I have to be a rigid strict mama when it comes to eating times, and I’m not, being rigid goes against my nature, so it’s a work in progress. Persistence. Everything about this goes against my nature. I have bend and shape myself in order to help my daughter. Again persistence.

Three more weeks and we will be seeing the RD for a check up on the wean. Currently River has reached the 10th percentile (again where she use to live before the 13th), the team was comfortable pursuing the wean because perhaps River’s normal is the 10th. But if we start hitting below that we will be reintroducing some blenderized tube feedings.

These have all been huge and momentous changes in River’s little life. We are all pushing hard to get her grow up. Sometimes I wonder if this is a good thing, or if this is the right time. I trust that it’s the right time for it, but I falter when it comes to seeing her weight decline.

So to end this update: Be positive and have faith(note to self), (insert screaming emoji here) and (insert happy thumbs up emoji with the word “Persistence”).

So it goes, so we continue on. So it is.

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Day in, day out

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I am not a frequent blogger, not anymore. As I ponder why I choose not to update the blog on the daily things or the once in a while things, I wonder where it’s going? I shockingly get 20-40 hits a day, and I’m filled with joy that maybe some of my words or information helps at least one of those seekers in a day. That’s why it’s here! So I thought maybe now would be a good time to just do a post on my reflections, where River is at in her life, and where we are all at.

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Various ingredients of our homemade formula

The typical day with River and her medical conditions have simmered down to low on the burner. She wakes up in the morning, we are currently co-sleeping, and calls for me. I grab my sleepyhead and plop her down next to her brother, who, like me, is already up. They take their time in the morning waking up, usually watching a little morning Minecraft. Then it’s time for breakfast, I can usually only expect a few nibbles from her. Her thirst is strong in the mornings and she’ll at least drink some juice and maybe eat half of whatever I gave her(after coaxing and coaxing). I give her ample time to digest and make certain I can’t expect any more oral eating before giving her the first “tube” of the day.

We currently bolus-feed and she gets about 8 oz. of homemade glorious green goodness formula. As I reported previously, her new formula, laden with whole healthy foods, primarily vegan protein, coconut, and some natural boosters, has improved her immunity. Last winter was very “sick”. Our little girl had like 5 colds over the fall thru spring. By summer all better. Just the warm weather?? I think not, it’s now February and River has had 2 teeny tiny short-lived colds since last May. I feel confident that the super formula I give her plays a large key role in that. It’s boosted with things like turmeric, ACV, grape seed extract, and fresh lemon juice. Not to mention the super foods like kale, spinach, hemp, etc. Oh sure, you say, well we can’t get our non-tube fed kids to consume stuff like that right?!?! I don’t have the answer to that other than just try everything! I try and sneak good stuff into my sons meals, and he does really well also (only 2 very short-lived bugs this year). And when I say short-lived I mean like 2-3 days of light symptoms.

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The day continues and the kids play and explore, read, watch, or go places. See, we homeschool, it makes life a bit slower and lots more flexible. I couldn’t be more grateful that I’ve chosen this for my kids, and I can’t emphasize enough how crucial I think it’s been to keeping River calm, healthy and happy. She experienced about 4 months of preschool at the age of 3. She was sick once for each of those months. She was also miserable there. And the paperwork! I am also so thankful to not have to constantly be in IEP meetings or 504 (or whatever those are for kids with medical exceptions in schools) and all that stuff meetings! I did that for years and years with my son for speech, and there I was going through it again with River for speech and tube-feeding. I love that we homeschool, more specifically unschool, and I can give them this freedom from constant evaluations, stipulations, observations, separations, and other “tions”. I highly recommend this for your tube-fed or CHD children.

River is sensitive. She had a really rough go of it in her first 3 years, not too mention those early crucial first months of life. Those of us with preemies know to expect some form of delay. We’ve had our fair share of “delay”. Speech delay, gross motor delay. Therapies after therapies. Thank God I’ve discovered unschooling. Yes, my daughter has some delays!! SO the Hell What?!? She still wants to smear food around like back in the old feeding therapy days. She can sit for hours with play dough and makes the HUGEST messes! But then there’s these great leaps forward as well with her understanding, her interests, and deep thinking. Unschooling is perfect for my children. They get to stop having to live up to predetermined lines of progress. We all know, you know this, I know this, that most children will eventually “grasp a concept”, but what ages they “grasp” or their brains just reach that stage of development is different for everyone. And as we all know, we know our children best, better than any doctor, teacher, or outside human. River is River, and I’m grateful that she gets to wake up when she’s ready, and I don’t have to take her to school where some other people get to have her all day, take care of her, give her tube feedings and fill out charts on her.

Going to her medical appointments has gone down to a minimum. We see her GI every 4 months. We do tube changes at home. I’ll go in to that a little. River hates to have her tube changed. Her tube is very tight, and it causes her great stress and discomfort to take it out and put one in. So I’ve learned how to do this at home, she still freaks out a bit, but much less than if it’s at the doctor. We bribe her to hold still and not fight us. She absolutely looses it when it comes to these tube changes. But after much gentle coaxing and the promise of any toy at the store the very next day, she’ll hold still. She takes deep breaths through her tears, and Daddy assists in helping her feet and hands from attacking me, for the 30 seconds it takes to switch out her tube. Every 3 months now a new stuffy joins her stuffy family after a tube change. Her fear is so deep and her anxiety so high, that it takes me all of my mommy powers to not cry with her. I have to have(or fake) confidence and no fear in order for her to give us that 30 seconds of trust. Maybe other people just hold their kids down or make nurses and doctors do that, but I won’t put River through one second of further trauma than I have to. If she can’t give us her trust, we wait till the next day, or for however many days it takes to talk her in to voluntarily allowing us to do this.IMG_1625

Back to the day in day out. Lunch rolls around, she usually eats ok at lunch. Dinner rolls around next, and by then it’s been many many hours since her last tube. She typically eats her best at dinner, so we always wait until after dinner to give her final bolus. We could bolus her more than twice in a day, since we give her about 15 oz in a day, but we chose to do it in 2 large boluses as opposed to 3 smaller ones for the ease of it. She can handle the 8 oz. at a time and we are fortunate of that! We give her that final one about an hour before bed time, and the tubes are done until the next day. We use large 140ml syringes for the boluses. We have to use lots of oil spray to lube them up. I use large mason jars to store our formula, which I remake about every three days. There’s always lots of jars, syringes, bolus extensions to wash around here.

We don’t know when our tube-life will be over. We have no idea how many potential heart surgeries or procedures she’ll need when she’s older. But life goes on. Everyday I am blessed she’s right here with me, growing up at her own pace, doing her thang. I also can’t wait for the day my kids are old enough to look back and read these blogs. I’m sure the eye-rolling will be in overabundance. And maybe, just maybe, they’ll also see how deeply I love them, so so much. 

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One Mad Cat

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Back in the day….when I had a quick-growing boy, the frustrations and expense of constantly shrinking clothes and shoes was kind of a pain. Perspective is a wonderful thing, and when River starts showing signs of growing out of things I get enormously giddy with excitement! I’m here to announce that River is now a 4T……4T people!!!! I literally can’t wait to go out and shop for some new things! Of course, she has a closet full of things that still fit, especially items that were bought a little too big. I get really gaga over this because it indicates her weight gain and growth!

We recently had our check up with Dr. P, and he was pleased to see her little dot move back up to a more acceptable growth curve. Her current gains have only taken her back up to an 8th percentile, but at this point we consider that her average. Dr. P continues to feel that this is where she wants to sit naturally, and that she looks overall healthy and bright, so he is not pushing us to do anything new. We will continue along her current feeding plan, which consists of 10-15oz of tubed food a day. We had her tube switched out at this appointment, which is the most difficult portion of the visit. She really throws a fit now, and gets very panicked about it hurting. Dr. P was able to finally get a new tube in, but unfortunately we haven’t figured out a non-traumatic way to get River through this. If the newer AMT-minis get easier to change(as their new design is supposed to do) I may try to go back to changing them out in her sleep as I did before, because it was 100% non traumatizing for her! But that was with the Mic-key button, which has a really smooth design, and easy to switch out. The AMT has a ridge that makes it stay in nice and tight(less chance of being accidentally pulled out) but a lot harder to put in. Dr. P said River’s g-tube tract is very healthy and tight, which is good for some reasons, but makes changing extra difficult.

River’s perception of her own g-tube has started to evolve. She is really fascinated with the new glow-in-the-dark version she received. She has some understanding now that we give her food through her “tubie” because it’s helping her to grow, and because she doesn’t eat enough herself. Sometimes we give her a choice, like if it’s just whole milk, water, or formula, going in, to try and drink it instead of having us tube it. Every once in a while she opts to drink it! So we are slowly moving into a zone of comprehension. But when we talk about the future when she might get the tubie removed she seems frightened by this prospect. Her tubie is a part of her, and it’s all she’s known. It’s extremely understandable that she feels this way. We gingerly approach the subject with only positive conversations.

I am still not ready to give her a trial wean again. We are patiently waiting to see how she does day-to-day, and look for signs that she’s ready. With her new found “chubbiness” we can see a time when a trial weaning might be nearing.

I know that many parents find my blog hoping for guidance, or ideas, or hope for their own tube-fed or heart kiddos. I don’t have a lot of advice, I only know what I’ve experienced. But I know that I was convinced that River was going to get her tube out long before we reached the age of 4. I was sure we wouldn’t be one of the ones who had toddlers, or older children, with a g-tube. Not us. No sir-ee. River was going to be one of those who figured it out at the age of 2 and would be among those early tubie-graduates.

I’ve learned that you only take one day at a time. Don’t give yourself unrealistic goals, or put this kind of pressure on yourself or your kid or your family. We went crazy going to therapy after therapy, to the intensive 2-week clinic, and beyond. Yes, we have achieved a lot, River was a baby who couldn’t put anything into her mouth or swallow. Now she eats! We have come so far! Just enjoy the little triumphs, have fun with your baby, love them, they will get there when they are ready. If we keep going forward, one day at a time, one day we will look up and before we know it things will change. Be at peace that your child is doing exactly what they need to be doing. Yes – therapies and clinics and research and effort is key to progression, but don’t drive yourself to misery because your tubie kid isn’t off their tube yet. There are so many more important things, like that they are well fed and growing enough with the help of the tube that their brains can develop, that they can be bigger and stronger to play, that they are happy and surrounded with support and love. One last thing I’ve learned: use real food whenever possible, get a Vitamix, don’t let your baby develop on formula that’s filled to brim with HFCS, sugars, over-processed crap. USE REAL FOOD.

MUSEUM OF GLASS

River recently won a spectacular prize!! Back in March, both the kids made a little drawing while visiting our local Museum of Glass, and entered their Kids Design contest.

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This was her entry, and she was chosen to have her drawing turned into glass art for May 2014. We were invited to attend the session and watch them make it live. River wasn’t exactly thrilled with the whole thing. Ewan really understood what a cool thing this was, and was very excited for his sister. She is very shy, and the whole experience was a bit overwhelming for her. She also confessed to me she didn’t like her drawing anymore. Oh poor baby! She will understand when she’s older, that even though she may not like her drawing anymore, that we all like it, that the artists at the glass museum saw something great in it, and it will be a piece that we will all treasure forever!! As an artist, I get that you don’t often like your own art, it’s totally normal. She’s also 4. 🙂

Here is more pictures of our amazing day at the hot shop! The museum makes two pieces, one for the museum to keep, and one for us.  We will get it in a few weeks!

 

Early stages
Early stages
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This is us clapping at the end!

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Finished piece, still very hot
Finished piece, still very hot

 

The end of another year

It’s the last day of the year and I’m finally inspired to write a post, a little catch up on the life of River. Now recently we had a check-in with the dietician back in November, and at that time we had tapered down some of her tube feedings, in hope it would encourage her to eat more at school. Her program, Head Start, provides breakfast and lunch, and of course most of the time River just picks lightly at her food. It would have been counteractive to send her with a full tummy in the mornings. So on that last visit, which was two months after the September visit, she only gained 3 ounces, she was at 27lbs 4oz! ARGGG we said.

Princess Bubblegum and Finn, Halloween 2013
Princess Bubblegum and Finn, Halloween 2013

So at that appointment the dietician recommended we change the formula we’ve been giving, to a higher calorie one. Previously she was on a “1” which is 240 calories per 240 grams, 1 calorie per gram. We have now started giving her Boost Kid Essentials 1.5, which has 360 calories per 240 grams. Her recommendation also was to not necessarily bolus her more formula but to just offer this, and hopefully get 10 ounces into her a day. Well we are lucky if we get around 7-8 ounces in her a day, but we weighed her and she has gained over a pound in the last month!!! She weighs in at 28lbs 7oz (according to our scale)! We were very thrilled by this development and are happy with this new formula. Her oral eating and drinking remains at what is usually is. She eats, she drinks, but if left on her own, doesn’t gain weight. We believe she may have to be on her feeding tube for much longer than we hoped. We still have tentative plans to start another weaning trial in the late spring, probably after her 4th birthday. The plans hinge on weight. If by then we have packed some extra cushion onto her little frame and her growth is on track then we will discuss this with Dr. P.

2013 School Pictures
2013 School Pictures

Whatever!! River is River, and she will do what she wants at her own pace, I’ve come to realize I’m only here to assist, not direct. Preschool is going well. As we suspected, and teacher confirmed, she is definitely shy. She tends to not speak up or talk much during class, but usually enjoys herself and gets along well in the activities(sometimes herded and mothered by many adoring girls, sometimes a little too much). I’m really hoping she’ll open up more next year. She is only 3! She is also the youngest and smallest in class, and is very intimated by all the rambunctious 4 and 5 year olds.

River @ College
River @ College

What River did this fall was help me complete college. Well, she at least helped win over one of my professors! I graduated with my BA in Art this quarter at The Evergreen State College. The last 2.5 years have been a whirlwind and sometimes I can’t even believe that I did it, all the while taking care of this little munchkin. This is where other people came in,  because I certainly didn’t do it on my own! I have to bow down to the excellent assistance provided by my husband, friends, and River’s nanny Patty for all the pick-ups and drop-offs and time and energy spent helping me and my family through this time! Woo Hoo I’m done!!! Onto to the next phase!

Christmas was good for our family, besides the pesky long-living cold River contracted, full of high fevers and buckets of snot. We managed to get up to the snow once, since it refuses to fall down here in the Puget Sound much. Leavenworth was beautiful and exciting, even if overwhelming in it’s crowd size! River’s favorite gifts this year? A fairy puzzle, a calico critter car, and some of those cute stuffed animals that come in purses. Not too mention the gobs of Hello Kitty clothes and books, she still loves good old HK.

Her speech is coming along well, she has added many more words to her daily vocabulary, even if they are still hard to understand. She wants to be understood and tries her best! I’m starting to think though that a dx of apraxia is not that far-fetched. Not that it makes a difference in treatment, she receives the necessary speech therapy, regardless of dx! And I have heard of other cases of siblings both having Apraxia. So with age 4 around the corner, and listening to other toddlers much younger than her speak so clearly, I am truly wondering if Apraxia isn’t the culprit.

I love my children, they, so cliche, complete me! Apraxia, feeding tubes, surgeries oh my! can’t stop us. Those do not define us, what defines us is how we deal with them and how we continue along on our journey.

Sledding in Leavenworth, WA. 12/21/13
Sledding in Leavenworth, WA. 12/21/13
Crazed kids on Christmas Eve
Crazed kids on Christmas Eve

Oh it’s been a while!

Mama got sucked into the vortex of college and couldn’t get out!!! I’m back, and it’s time for a River Spectacular!!!

Get the sillies out

River is doing fabulous first off! We had our 3-month check up with her GI clinic and she did gain weight, but sneaked down the scale a little bit, now coming in at 7% BMI. But Dr. was assuring and said that this is River’s trend and she still falls within her general curve and not to be worried. He changed out her AMT Mini G-tube button, and River cooperated so amazingly I was wondering who this little girl was. My little girl…not my little baby, anymore. She’s grown up so much this year! She would have normally pitched a huge fit and freak-out session, which is why we switched to changing out her tube usually while she slept. This new AMT is a bit trickier to get in, and I doubt she’d sleep through it like she would the Mic-key. She was uncomfortable, scared, but so brave, and she surprised me! We got the big news too, that if we can manage not to touch her tube for the next 3 months(by that I mean use it for supplementing her) that we may be able to get it out in the fall! This is exciting and scary. So far I haven’t touched that since last week, but I keep wanting to feed her extra! That 7% is bugging me, she was over 10% three months prior. We will just keep taking it day by day as usual. Assessing the situations as they arise.

In other related news, River recently got assessed in the local Childfind, and she has  been approved for preschool starting in the fall, where she will receive speech therapy as well as regular pre-schooling. She has been seeing Julie, her SLP, weekly since about March. Her speech patterns are similar to Ewan’s early errors, but she has caught on that we want her to add sounds, also to improve her volume and clarity. It’s been going really well, but I think it will take time for her to start integrating these improvements in her regular speech. She does excellent during therapy, and daily reminding, but usually doesn’t translate over to her talking. But I predict speech therapy will do it’s job to help her and by the time she hits kindergarten she won’t even need it!

Our “little lady” has also decided that she was ready for the potty, all by herself. Recently she was adamant that she did not want to use it, but she made up her mind and went and got her potty one day about 3 weeks ago. She’s been using it ever since! She is so proud of herself, we even managed to survive camping this week with a travel potty seat! We will be all ready for our summer trip to Utah soon! They will all be blown away by the girl they meet 🙂

Ms. River is a head strong determined little girl who knows what she’s doing….maybe she is ready to let go of the tubie. Am I?

Hi from the lake!
Summer 2013! Yay it’s here!!

Going Rogue

It’s been nearly 4 months since our 2nd wean attempt, in September, at Seattle Children’s. Since then we’ve had to reevaluate our thoughts and feelings regarding weaning and tube feeding with River. After the practically unchanged oral status following the intensive weaning program, we felt that we had no more energy to put into weaning. That River just needed to be left to be as she is. What she was was roughly 50% tube fed/50% oral fed. We worked hard on her oral fluid intake, only to come home to the exact same intake as before we left for the program. I was disheartened, and decided to come to a state of acceptance. To just accept her tubie was part of her for now, and that it may not change for a long time to come. After our final Seattle follow up we decided to take a break from any feeding therapy. I informed her therapist at Mary Bridge that we would be taking at least a 6 month break from feeding therapy, that we were just going to let River coast and take pressure off of her to increase her oral intake. Mentally and emotionally my husband and I really needed a break. This decision was very difficult for me to make. I felt as if I was letting River down by not pursuing every avenue of help for her, that I was somehow giving up. But I managed to come to terms with that and realized we could all benefit from this new mindset.

Since the program she was having some trouble gaining any weight, she was remaining static, neither losing nor gaining. So in October we just started pumping her full of formula, even with the knowledge it would discourage her oral eating. We wanted to get some good weight on her, and it has been pretty successful thus far. Since then we’ve managed to get nearly a pound and half on her! As of the end of December she weighs 26 1/2 pounds!

Even though we’ve decided to quit feeding therapy, it doesn’t mean that therapy is over for her! She is currently in OT, to work more on her vestibular system, her difficulties with balance and her sense of gravity. These keep her very cautious and tend to hamper physical development if untreated. We also had her speech reevaluation, and her scores have dropped in the expressive area and they do recommend speech therapy. We are holding out on a waiting list for our favorite speech therapist, Ewan’s speech therapist that he saw for 3 years. Her speech continues to develop, and her receptive skills are very high, but she is hard to understand a good deal of the time. She may have a touch of apraxia, or just a mild speech delay, either way we are confident that just a little bit of speech therapy will do her a world of good.

Our holidays were very relaxed and very happy! We had a great time hanging out with our kids and spoiling them as much as possible! It was on Christmas day that I was really looking at River, trying to determine her health. Was she getting to a good weight? Was all of this tube feeding we were doing helping? We were feeding her high calorie feeds, and her oral eating and drinking were down to about 10-20%, it felt like she wasn’t eating anything! We’ve really been on our own lately with that, getting in to her GI clinic has been awful, and we won’t be seeing them until February!! I’ve been extremely frustrated with their office. We had a November appointment scheduled with them, then they called me like a dozen times to inform me that her GI doctor couldn’t make that appointment, and I had to change. When I finally got ahold of someone to change that there was no availability until January!!! Well I knew that he wanted to see her before that, so I told them to put me on a cancelation call list to get me in ASAP. So they never called, ever. I called back, and they said yes I was still on the cancellation list! But I had to put something concrete down, now we couldn’t get in until February!!! I’m still on the cancellation list, and apparently no one ever cancels! It’s ridiculous but I refuse to see any other GI doctor. Dr. P knows River well, and I don’t want to see anyone else. And I feel confident in my own assessments of her health to at least know her g-tube site is healthy, and her nutrition is good.

So having said all of that, we have gone rogue. As I said, River has been looking great, her weight has gone up significantly. We were noticing some serious signs of oral aversion creeping back in during all of that tube feeding. While she was on the high-calorie tube feeds, she started to become more gaggy on things, brushing her teeth, on various foods. I could see we were really starting to back slide. Ideas of another wean attempt began to sneak back into my head. I just felt, deep down, instinctually, that she is capable of eating and drinking everything she needs. I knew, and have always seen, when we tube feed she’s not hungry/thirsty. During the Seattle Children’s program, while all of us were diligently trying to get her to eat and drink more, the results were from the professionals that she eats a good diet and a good variety of foods and calories, but that her fluids lacked. ALL THE WHILE they wouldn’t let her get dehydrated. We were still giving her around 700 mls of water through her tube. OF COURSE she wasn’t that thirsty. I have known this, and I should constantly remind myself, that medical professionals always have to stay on the safe side. They will never tell you to do anything that might be considered risky. They have malpractice to be concerned about. For all I know they’ve all been screaming in their brains at me, hoping I’d pick up on it psychically, that if only we took her completely off the tube would we see what she is truly capable of. And maybe deep down I’ve always known we need to try this too, but I’ve had to balance my instincts with what her medical team tells me. Maybe this long hiatus away from her GI and the feeding team has been a blessing. We’ve decided to stop tube feeding River.

Photo Jan 03, 12 40 07 PM
Jan 3rd: Eating an amazing lunch, and entire 1/4 of a turkey sandwich and more!

We started January 2nd, 2013. Today is the 6th, this is her fifth day with zero tube feeds. We only felt comfortable saying two days tops! It’s been 5! Day one she didn’t wake up hungry because we tube fed her at night her typical formula bolus of 7 ounces of Compleat Pediatric formula. But she drank more juice and milk than I’d seen since the September program that day. She ate good. She asked for more food. She even went to her high chair on her own, waiting for her meals! This willingness and hunger she’s had has blown our minds. I started keeping track of her daily drinks. Each day it’s crept up an ounce or so. Day 2 she drank 8 ounces total, then 10, yesterday it was over 12 ounces in one day! Unheard of!!! We are taking it day by day, we have no goals. We are going purely off of our gut. If we feel she needs a tube feed, we will give it to her. We will continue to observe her overall health and body fat. I will weigh her about once a week. It’s time to start trusting ourselves on this. And we are cautiously excited.

Now in order to get the good numbers we have got, I have to hound her. I have to constantly stick a sippy cup in her hand, or her mouth. Constantly pop bites of food in her mouth for her. Make sure at least every 2 hours she is getting some sustenance. But I’ve never seen her accept this as much as she is right now. She lets us keep sticking drinks and food in her mouth. And if we are patient at meal times, she will eat more than we expect!!! The other incredible thing that has happened is her mood. Before this wean attempt, her mood was actually beginning to concern me. Was it typical terrible twos?? Was it holiday overstimulation? She was a moody cranky thing most days, tons of whining. I thought maybe it is her communication that was frustrating her, unable to get us to understand what she wants. But since Day One of the wean her mood has been glorious, she’s been beyond cheerful and cooperative! Fingers crossed it stays this way!

Our little beauty
Our little beauty

In other news, her eyelid surgery has been rescheduled. It’ll be on January 17th at 1:00pm. If we are still on no tube feeds at this point I definitely expect a set back, but that should be normal. Hopefully, best case scenario, she will go to sleep for a little while, wake up with minimal pain on her eyelid, and we’ll pop back home, and a little tylenol and our girl will feel fine. Again, fingers crossed.

Here’s to following your gut.

 

Summertime Tubie

It’s been a while since I was last here! I have been crazy busy with my spring quarter of school, but that has finally been completed!

It’s summer time almost officially, and we are preparing to kick it in gear! We’ve got a year of kindergarten for Ewan wrapping up next week, then a camping trip, then the big trip to Utah for the month of July.

River has been growing and changing all the time. She just had a check up at Dr. P’s and they checked her weight and height as usual, and she’s grown a lot vertically (2′ 11″) but has managed to somehow lose weight *frowny face*. They suspect its because of the rough month she’s had with viruses! She had a double ear infection a month ago, followed by brother’s tonsillitis, which she then caught another cold from! Her appetite has been really consistent lately, and we’ve maintained 20 oz. of PediaSmart supplementation a day. Somehow all of her calories went to growing bones, she’s getting tall! She was on Periactin for 6 weeks, and we are now off. I feel that unless we see a noticeable change in appetite (in the down direction) we will probably not restart it. But I’ll have a refill of it just in case.

We had her speech and hearing evaluations recently. Speech went surprisingly well and the therapist rated her high enough to not qualify for speech therapy yet. Her expressive language is low, yet it’s coming along. She said there is a small delay but she might catch up soon enough. And her receptive language is really high and she scored above other kids her age. Her hearing test results came as no surprise because I already knew her hearing was just fine! They just had to rule it out of course.

We are still considering the intensive feeding clinic at Children’s in September. I’m very on the fence with it. I still feel her weight is too low to cut her off tube feedings, but we have some time to try and get her chunkier. She is almost officially discharged from physical therapy!! Jean wants to see her back in a couple of months just to check in and then probably discharge her completely. She feels her walking keeps improving, and her feet movements are coming along (she was pronating significantly for a while). Jennifer, her SLP for feeding therapy, thinks her oral motor skills have improved a lot lately as well and thinks we can reduce our sessions to just once a month! I agree with that decision, it’ll be nice to have less therapies for the summer and just relax and have more fun!

Such an amazing spirit!

 

Many little updates

Sunny Spring Day!

So we have a few things to get caught up on with River! Over the last few weeks River has been to Seattle Children’s Growth and Feeding Dynamics clinic; her 9 month check up with Cardiology; GI clinic check up; Feeding therapy with Jennifer; and is OFFICIALLY a walker! And in the next couple of weeks will go so a speech and hearing evaluation.

Being a perfect angel during the echocardiogram

Cardiology: We finally got to see Dr. Obayashi after a 9 month hiatus! River had to go through the regular testing, ekg’s, blood pressure, and an echocardiogram. She was an amazing perfect patient for the technicians and the doctor. Everything checked out great! I don’t think River has to go back for another 9-12 months. It was also a good opportunity to chat with Dr. O about my current art projects regarding hearts and CHD. He is assisting me as much as he can by helping me pinpoint River’s CHD’s so that I can try to visualize them and eventually have several illustrations of her heart. Dr. O loves little River and has been amazed by her health and progress!

Getting her EKG

Seattle Children’s: Last week we visited Seattle Children’s Hospital for our long awaited Growth and Feeding Dynamics Clinic evaluation appointment! We decided to get this referal because they offer an Intensive Feeding Clinic that is a two week long program. I wanted to learn more about it and consider whether or not this would be a good place for River. They did a lot of the usual intake questions, they had to learn River’s history. We met with their feeding team, and talked about River’s journey with feeding tubes and oral aversion. I explained to them about the at-home wean that we attempted and they were extremely impressed by the progress she’s made with eating. Their program consists of two weeks, Monday through Friday, weekends off, where you go in the morning and do three back-to-back feeding therapy sessions until the afternoon. To do this program we would have to live up at the Ronald McDonald House, because the commute is just too brutal, and I told them I would be uninterested in it if I wasn’t staying in-town. They do believe River would be a great candidate for their program. By their estimates River is an acceptable BMI and growing at an adequate rate (very assuring :)). The other thing we talked about being a big plus for River’s oral eating is the need for peer interaction! They use to do the baby picnics and peer modeling at this clinic but that has declined, and it can be very tricky to find age appropriate peers while your child is in the program. I said that is a huge factor for me as we readily see River’s oral eating improve if she’s eating with her brother or other peers.

Now it’s on me!! I have to decide if I think their intensive program is the best thing for River! We are tentatively scheduled for the program during the first two weeks of September. I would have to move up to Seattle during that time. I’m going to weigh all the pros and cons and hopefully discuss this with families that have been through this same program.

Loves her elephants

Dr. Pickens: River had her weight and nutrition check up last week, following her regular feeding therapy. She did really well in FT and we are mainly working on her ability to chew food properly, and to encourage more drinking fluids! Fluids with calories is a huge part of a toddler’s consumption of daily calories and requirements for growth! Dr. P is happy that the Periactin at least proved to be somewhat an appetite stimulant and we discussed keeping her on it for longer intervals. As long as her appetite appears to have some improvement from the use then we are going to try and keep her on it for up to 7 weeks at a time before breaking. She is currently on it, and still seems to have a slight upswing in her drinking and eating while on it. Her weight is still hovering around 24lbs, but they are satisfied she is gaining weight again and don’t see a current need to increase her diet. We discussed the visit to Seattle. Dr. P has had one other patient attend this clinic, and they did see it help, as the child was at a 0 in the oral department, and the clinic helped him greatly increase his oral eating, but the commute was their biggest complaint, and the need for peer modeling.

Here’s a video of her walking (to Dr. P’s office):

Things are moving along on my CHD project and I’ll have a separate post soon regarding some of the heart art pieces!

The Appetite Experiment

Acceptance and perseverance are the words that come to mind lately with our weaning trial. Lately I’ve had to be the one accepting. Accepting that River is who she is right now, and if she can’t eat everything she needs in a day that it is ok, that is where she is right now and we need to accept it. But she is also on track to be partially weaned, we need to push on through and find ways to help her get there!

We had our check-up with Dr. P on Friday, her GI, and with the recent tube feedings we’ve been able to get back to a state of weight gain. She’s gained about .3 kilos in the last 2 weeks, about 11 oz. So that’s good news! The dietitian said that as long as she’s able to gain we don’t need to increase what we’ve been giving her lately, that she’s getting enough. We still follow-up 3 meals a day with about 100ml of formula(Organic Pediasmart). And still give her a nightly bottle and then bolus what she doesn’t take herself. Along with about 400ml of water throughout the night, sometimes I include some juice in that. We all discussed the various factors why River might not be eating or wanting to eat enough herself. Dr. P tried to go down the road of gastric emptying but I’m not onboard with that idea. I never feel like her stomach isn’t emptying. She seems to get hungry at normal daily intervals. And her capacity is much better these days, we are able to gravity feed up to 5 oz at a time with no vomiting. Sometimes I can tell she’s uncomfortable with a 4-5 oz. bolus, but it doesn’t seem to stick around for long, as if she’s digesting at a normal rate. So the other idea was that she just doesn’t have a big appetite. She’s capable of eating now, she doesn’t throw up, she enjoys food, she tries many new things, but she just doesn’t eat that much. What we give her in calories a day is about 600 via tube, and she eats around 100-300 in calories herself. All of this would be a non-issue if she felt like eating more! Dr. P wants to try Periactin in this case. Periactin is a mild allergy medication, in the Benadryl family, but has the effect on some to stimulate appetite in low doses. I’ve heard about this medication from various tube feeding arenas. The only common side effect is sleepiness, and you start out by giving the med at night. The other part of this med is that you go on and off in intervals. We will start with 3 weeks on, 1 week off. Dr. P said that some kiddos only use this med for a few months, others a little longer. So I feel that’s it’s totally worth trying for 2 months to see what happens. He said we won’t probably notice any difference right away, the effect is so gradual. But by the time we reach our week off we may notice her appetite slacking off, which will indicate that it’s working. We started this medication on Friday. Hopefully on to good results, I am willing to try almost anything at this point!

The other thing we left the appointment with was a new mic-key(and River was an angel thanks to a video on my iPhone). And a referral to Seattle Children’s feeding clinic. They have a really good feeding clinic up there, and have an actual weaning program. I just want to talk to them. And we are all interested in hearing what some new voices might have to say! Hopefully this week I will be able to get in touch and make an appointment.

Bro's sunnies