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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Being brave

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Summer has been a whirlwind of fun and sun! We’ve enjoyed our warmest summer (ever on record) up here in lovely Washington, with many visits to the beach and forests.

Over the last 6 months River has had her annual pediatric check up, her annual cardiac exam, and another GI and dietician visit. She is now sitting at the 8th percentile, a slippage from recent times. And although it isn’t thrilling to see that happen, her weight is what makes that number drop, what’s a tad more important is that her linear growth is consistent, and it is. As hard as it is to not see her grow by leaps and bounds, seeing that linear bone growth staying hard on it’s chart line at least assures us that she’s staying on Her track, if not going up the other tracks.

IMG_0690As far as her cardiac health is concerned, we are pleased to report we will not be going back to see Dr. P for two more years!! It’s so hard to believe that we’ve been only going once a year for years now, and now down to two years!! Her visit was very uneventful, she was the most cooperative ever, the echo room almost made the parents fall asleep, and that was that! No news is good news at this place! We will see you in two years NWCHC!

Since a run of really bad colds over the winter and spring, finally when May hit and she had another cold, I decided to try adding some serious healthy additives to her blended food. We had to get her immunity stronger! And even though it coincided with the coming of the warmer weather, I can report she has been virus-free since then! I may alter my recipe some more for winter, looking for even more natural supplements to boost her immunity. So far I’m adding in turmeric root, water kefir, apple cider vinegar, ginger root, fresh lemon juice, and always either spinach or kale, black strap molasses, pumpkin seeds, chia seeds, hemp seeds and virgin coconut oil. These on top of a few other necessary foods for an all over picture of nutrition, like some quinoa, an additional protein source, and seasonal veggies. I don’t add fruit, or other foods that we know River will consume on her own. I think I’m going to start including manuka honey, echinacea and garlic as we move towards the cold season.

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I had a long conversation with a really amazing mom recently. She told me about a program in Denver, and Portland, that is a feeding program for tubies. Dr. P wanted me to consider looking into this program, and I got to hear firsthand from this mom all about it. They managed to take her 100% tube feeding son to about 50% tube feeding, which is a huge accomplishment! But I was not thrilled to find out that they spent about 6 weeks in this program. I was not onboard when Dr. P was telling me about it, and I was not onboard when the mom was telling me about it. We tried so hard in the beginning, like SO HARD, so very very hard. And although we made a huge difference in her life, I have become a firm believer in River. River is the force that propels her life, and now at five there is just about nothing we can do to convince her to eat and or drink anymore than she already does. And I’m confident that when she is ready, we will all see this and know it. I am not going to any life-ripping-up programs anymore to see if we can get her off her tube a year or two sooner then she’s ready.

We are not ashamed of having a tube-fed daughter. River is not lesser than any other. She is not more. She is her wonderful self, that fought hard as a baby to get where she is now. And where she is now is where most five year olds are. Enjoying her playtime to the fullest every day. Enjoying tackling her brother, smooshing play dough together, making mud pies, running through the woods. She literally doesn’t have time for that extra bite or drink! She’s too busy! One day, when she’s a little older, she will be ready for the next step. We are following her footsteps in the sand to that day.

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I have made a new piece recently, in honor of River, here is where you can view and purchase it:

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http://www.redbubble.com/people/motribbz/works/15994195-be-brave-heart-warrior

And this piece was finished earlier this year, not sure if I included it before.

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https://tribbill.wordpress.com/2015/04/12/new-work-adoration/

Peace, love, joy

Michelle

Milestone: 5 years old

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It’s time for Five! My daughter turned 5 yesterday, on St. Patrick’s Day. It’s a huge milestone in my eyes. Maybe it was just a birthday for her, or her brother, but as usual my big sappy self says this was a huge day. It’s been 5 years since her birth, a day I can never forget, but would like to sometimes.

Back then I couldn’t even imagine getting to her fifth birthday, not because I couldn’t imagine her surviving, but I just couldn’t see that far ahead, I was only looking to hang on day by day, week by week. Soon it became month by month, now year by year. It’s so wonderful to be beyond that.

We are still here, River still has a portal to her tummy, her g-tube, her life-support. We are ever changing and growing as a family and marching forward into unknown territory with her medical conditions. People occasionally seemed surprised to find out she still relies on her tube, since she eats so well. They are sometimes surprised to hear that her heart surgeries are not over. They may also be surprised to hear that she didn’t walk until the age of two. That she’s been in feeding therapy, occupational therapy, physical therapy, and speech therapy. They might be even shocked to hear that she was delivered via emergency c-section with unknown conditions 2 months early, at 3 and 1/2 pounds. That she survived her first heart surgery at that same weight only 2 weeks old. Her second at 5 months. She’s had spinal surgery, eyelid surgery, and g-tube surgery. She’s a bright little girl with a heart full of joy and dreams. She kicked butt back then, and she still does.

Doctor’s once told me it was my milk that was causing digestion issues, so let’s try some fancy expensive medical formula made mostly out of corn sugar. It really boiled all down to oral aversion. She does not have allergies or digestion issues. But sensory aversion will keep a child from eating. With years of treatment we have a girl that eats and drinks. At five she still doesn’t understand how much she needs to eat to grow on her own. We will get there, we don’t know when, and I’m done with orchestrating any more “trial weans” or “feeding treatments”. We are going to let River decide when her tube comes out. Everything has always been done on River-time, sometimes I wonder if any of the therapies even worked. River, perhaps, got there on her own. We just happened to be in therapy, coincidentally. It’s always been up to her! She’s still just as decisive and head-strong as ever, and I can’t wait to see her continue to grow up!!

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Dear River,

I’m delighted to be your mother. I love you in a way you will only understand when you are a mother. You’ve made me become stronger than I ever thought I could be. You’ve brought me to my absolute lowest moments, my scariest moments. You’ve shown me what life is really about. Your brother taught me how precious life is, you taught me how to fight tooth and nail for it.  You showed me that pain is temporary, that it can be overcome. You are Xena, you are Joan of Arc, you are anything you want to be or can imagine. You are perfect, pretty pretty please don’t you ever ever feel like you’re less than f***ing perfect! I will always fight by your side, as long as you need me to. I may have goals, but you are my purpose. You gave my life more meaning than I thought possible. Together we are invincible!

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Blended Feelings

Yes, I’ve been avoiding you. The blog has always been a place where I can dish about River’s life and spill my guts out all over so I feel better. I, hopefully, have helped a parent or two. But I haven’t wanted to share on the daily humdrum of tube feeding. I can’t deny that I’ve been sad about our slide back to a 50/50 tube feeding lifestyle.  River’s backtrack on by-mouth success over last year had us progressively going back to using the g-tube. We have had such great hope for our daughter’s success at oral eating, but for the time being I believe we have found a balance.

Her percentages fell below her typical curve in January 2014, and we had the GI and the nurses all freaked out about her weight(lack of gain). DH had never seen Dr. P look so distressed by it before. So we added even more calories to her daily tube feedings. Her need for weight at this time outweighs the need to push getting off the tube. She had her four-year checkup recently and she has bumped back up to her curve and the doctor was not concerned about her growth, and believes that River is just a petite little thing and may always be that way. It does give us great pleasure to see the pounds growing on her, she weighed in at 29.4 lbs today, and that is giant news around here, that is a fabulous number!

Now, 3 months later, we continue to tube feed her approx. 12 oz a day of a blenderized diet that we concoct. Since then we’ve also pulled her out of preschool. Preschool did not work out after all, and, since I graduated, there was no need for the day care. She became more and more upset about going to school, and she was not handling well the constant over-smothering by her classmates. Some of this distress may have contributed to her lack of weight gain over the winter.  Chill time has been much needed after a hectic last four years, so we also pulled the plug on speech therapy(especially since her speech has grown by leaps and bounds), and will return to that at another time. We believe that her weight gain has been in response to us going back to a blenderized diet using a Vitamix. We used this method to feed her before the first attempt at weaning her at 21 months old. We strongly believe that better nutrition(real whole food) has a huge impact on her weight and health. We were told to just start giving her more of the Boost drink she was on, which of course is just filled to the brim with refined ingredients and loads of sugar. Her blender food consists of only whole fresh ingredients.

Sample recipe:

  • 2 cups organic whole cow’s milk
  • 1 cup organic brown rice cooked pasta
  • 1/4 cup flax oil
  • 1/2 cup organic spinach
  • 1/4 cup organic carrots
  • 2 tbs. organic peanut butter
  • 1/4 cup organic hemp protein powder
  • 4 oz. organic whole milk yogurt

This recipe produces a calorie count of 1.7 (which is 1.7 calories per every 1 ml) and makes 925ml (just under 4 cups) and lasts us about 3 days. But most of the time we just wing it. Sometimes we add other things like cooked organic eggs, olive oil, current seasonal vegetables, a banana. She also takes gummy multi-vitamins and fish oil. If River notices us making her blend, she may even have a request for us to put in something she likes, usually it’s apples. We have our next appointment with GI in May, and we will talk about all of the concerns revolving around River’s eating and weight, and to change out her AMT mini(not fun). She is currently eating at every meal and still loves food and drink, and hopefully sometimes she consumes enough bonus calories in the day herself!

❤ Today, River had her annual cardiology check up. It’s such a pleasant office, it’s sights and sounds bring me the opposite of comfort. But going in, I was not that worried, although I’ve had some nagging questions, and one which has been heavy on my heart lately. We took Ewan with us, he said he was interested in seeing River’s heart and I just couldn’t deny such a great learning experience(and a reason to have him with us to keep River happy – which he does a great job at). Ewan was able to escape school for a few hours, and observe an echocardiogram(although he’d been years ago, he doesn’t remember).

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Three thumbs up after only a few shed tears at the ekg.

Everything went great! River’s echo and EKG looked fabulous. Her bicuspid aortic valve and aorta are the primary areas of concern these days, as of today the aortic arch(site of COA repair) looks great with no narrowing, and her valve looks the same as before, the same amount of small leakage is there, but not enough to be a concern. River never has any complaints about breathing, her chest or heart. Finally, it was time for my questions for the year…. First I want my yearly dish about her coronary artery defect, I want to know what the doc thinks about her future with that concern. He explained that a CAT scan will be needed on her heart to get a full three dimensional image and map out the coronary artery and it’s origin, and that will be coming up for her around the age of 10. Then we will all know more about how big of a risk it is in her life and if a repair is in order or not. Ok, Ok, that calmed me a little, it’s still definitely a big “if” and she is just too young to know more.

Now…the question I wasn’t sure I wanted to know the answer to, but it finally dawned on me recently about women with CHD’s and pregnancy. Would or could River carry a baby without endangering her life? I have been fretting and gnawing on this question for months now. Sure, it’s entirely likely some doctor told me 4 years ago this answer and in my trauma-induced state I’ve completely forgotten. Each person with CHD is different, and there is no blanket answer, there is only her individually to assess.

Reluctantly cooperating, being a big brave girl
Reluctantly cooperating, being a big brave girl

My heart froze up for a moment and I braced myself, I couldn’t believe I was willing to go through this with the children in the same room. They would certainly see me lose it if the news was….well….not something I could handle lightly. I owe a huge SIGH OF RELIEF to Dr. Park today, he gave me the answer I was hoping for with all my heart.

Yes. At this time, River’s heart conditions are considered ok for pregnancy. Of course, cardiology would be involved in her pregnancy, monitoring her. It is a possibility in her life, if she wants to, have children. Weeping on and off since I got home, and celebratory enough to finally come crawling back to this blog 🙂

Happy Fourth my little pixie, here are some pictures at her birthday party:

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Her beautiful cake by our dear friend
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Her Hello Kitty/St. Patrick’s Day theme birthday
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Party at the Children’s’ Museum

2 year anniversary: Open-Heart Surgery

August 25, 2010: We needed to arrive at the hospital around 6 AM, with our son staying at a friends, we checked in while the whole hospital seemed asleep.

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It took a couple of very causal hours up in the Pediatric Intensive Care Unit to prep her gently for surgery. She was just 5 months old, and we hadn’t been back to that hospital for 3 months. Living there for the first 2 months of her life was the most trying time in my life. To be back came with very mixed emotions. Life saving surgery. Baby on life support. Open-heart surgery. Huge risks. Huge rewards. I managed to hold it together that morning. Handing her over was very difficult, and the next 3 hours very long.

The ride over the next few days was very bumpy, last year’s anniversary post is here. Our stay was 10 days and I felt like I came home with a new baby! You cannot take away the very real risks involved with any surgery, for anyone. Especially not this type of surgery. We are extremely fortunate to live very close to a children’s hospital who had a very amazing heart surgeon. I feel extremely blessed every time I remember the experience. And every time I look at her chest scar I feel gratitude and joy. That scar is one of the best things that ever happened to her. I love her scars, every one of them.

All settled in after surgery 8/25/10

Being two years away from that day is also a blessing! We have a little heart-healthy girl, on no medications, and can be active and enjoy life to her fullest extent. We are also 2 years closer to the next time we must take her into open-heart surgery. Still a ways off, but in about 6-8 years it’ll be time to do it again. This time with more trepidation since the procedure to repair her coronary artery defect is controversial, comes with the same risks as all other open-heart surgeries, and she’ll remember. But we are granted with the luxury of time right now! So I get to tuck that away for another day.

Looking back and remembering, I think sometimes how impossible it nearly was for me to endure these events as a mother. As a family we went through some serious hell. River was so ill and fragile, and endured so many health complications and procedures, my heart stops when I think of it all.

Truly impossible: life without River.

Beginning to recover!
The Amazing River Belle

My Heart Work

As I mentioned a while back I was working on a theme for my art this spring quarter at school. The Evergreen State College is a great place to attend school, they have a wonderful program called Individual Learning Contracts. Which gives you the freedom to occasionally pursue your passions, and earn credit for them. I chose to recently pursue a painting contract that revolved completely around River’s heart defects. I wanted to explore my relationship to them, and also to do some medical illustration. I was fortunate enough to have assistance from River’s Cardiologist Dr. Derek Obayashi, who sadly is leaving our clinic to go to Boston. Big Frowny Face. He was a huge help in having a specialist to show my work to so I could be corrected and learn greater accuracy. He was also very willing to further teach me about congenital heart defects! Dr. Obayashi has known River since she was one day old.

The following is the artwork I accomplished in the last 10 weeks:

Four Chamber View, Healthy Heart
Anterior View, Healthy Heart
River’s Heart
A Heart Mother
3 lbs 12 oz.
River’s CHDs

Jamie’s Heart Foundation and Mended Little Hearts

Jamie’s Heart Foundation is a wonderful family run non-profit founded out of Puyallup, Washington. They assist the Mended Little Hearts of Puget Sound group that I am a member of. I wanted to make sure you were all aware of Jamie’s and MLH and what a huge benefit they are to families exactly like mine. If you are ever looking to donate to any charity that actually hits home, these are the ones. You’ll notice River is on this page of Mended Little Hearts: Groups.

Jamie’s Heart Foundation provides financial support to CHD families that might be struggling due to the many different reasons why one might because of their child’s heart illness. Jamie was a beautiful two year old girl who’s story is so heart wrenching that I can’t even think about her without losing it. There is a special clinic room just for her at Northwest Children’s Heart Care, and River always gets this room.

Her foundation will be the spotlighted non-profit group at the Tacoma Rainier’s game on July 1st. Here are the details, and here:

Jamie’s Heart Foundation CHD Awareness at the Tacoma Rainiers

The Tacoma Rainiers are welcoming Jamie’s Heart Foundaiton and CHD families to Cheney Stadium on Sunday, July 1st. Jamie’s Heart Foundation is the featured non-profit for the game and will have special moments throughout the game bringing awareness to congenital heart defects and CHD kids.

Game starts at 1:35pm. Please come out to Cheney Stadium to join us. Visit the Tacoma Rainiers website to purchase your tickets.

Free Tickets for CHD families on July 1st

Jamie’s Heart Foundation has free game tickets to give out to CHD families. If you are a CHD family and would like to join us, please email us at info@jamiesheart.org with the number of tickets requested to reserve your tickets. CHD family tickets include reserved section tickets as well as a meal voucher for a hot dog, chips and drink.

We look forward to seeing you at Cheney Stadium!

I recently made up a flyer for our MLH group, it will be passed out at the game:

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!