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.

 

Intensive Feeding Clinic @ Seattle Children’s Hospital

There’s no doubt about it, everyone had high hopes. Can’t deny that everyone prays and wishes for miracles; of course they do. We did, our family did, our friends did. For some I know this clinic has brought around great change, babies that enter completely orally aversive have known great success after their two weeks in this clinic. To summarize, what we experienced was not a miracle cure. It was an education on how to feed River in a way that gives her a better road to success.

Seattle Children’s(SCH) is one of the only places on this side of the country to have a clinic that does this kind of intensive therapy, based on calorie reduction and daily feeding therapy. We are fortunate to live close enough that it seemed a logical choice. We still do not live quite close enough to make it an easy commute though. River and I opted to stay for the weekdays up close. Her insurance approved accommodations(an unlikely occurrence) and we were granted two weeks at the lovely Seattle Cancer Care Alliance House. It was an incredible building, and filled with incredible people. People from all walks of life, attending some kind of treatment or caregivers of those hospitalized. I can’t say enough good things about this place and this organization. This place was built much like a Ronald McDonald house is built, specifically to care for those undergoing medical stress. It was soothing and had everything you could ask for in a home away from home. I think I will need to do an entire separate blog on this house and our experience there.

About 4 days prior to Day One, Monday September 10th, we start reducing River’s calories about 20% a day, switching out her tubed formula for tubed water. By the time we arrive River is down to one tubed formula (about 160ml) bolus at night, with about 20 oz. of tubed water as well throughout the day. The goal is to keep her hydrated, but just barely low enough to make her thirsty, and hopefully extra hungry as well with all the calories we cut out. We leave home, Daddy and Ewan to fend for themselves. We meet Peggy, who is to be her occupational therapist throughout the next 2 weeks(and follow ups). River is also followed closely by a dietician and a nurse practitioner while there. River handled all of these changes with hardly a hiccup. She, for the most part, was her typical curious and cheerful self. There were some crankier days, and definitely she was affected by all of the stress and change, but is so easy going that you have to know her well to see how it’s affecting her. We also meet Ezekiel, the little boy who is attending the program with River. They always have 2 participants at a time, we alternate 3 feeding sessions a day. River’s schedule was 9:30/12:00/2:30, with hour and a half breaks in between. We start to learn about the hospital and where everything is in it. It’s a large place with many different areas to interest River, places to eat, and places to walk.

I always knew that feeding therapy was a team sport, where parents do not sit on the sidelines. But seriously, this is hard work for the parents. Unfortunately due to our lives Pete was unable to attend any of the sessions, having a full time first grader and a full time job at home. If you have any notion that you will take your baby to this program and you get to hand her over to the therapists to let them work some magic and then give you back a baby that eats and drinks you are delusional. The caretakers of the tube-fed child, and a child that is ready for the next step, are the keys to the solution. The therapist facilitate, provide guidance, provide shoulders to cry on, and tricks and ideas to try out. But they do not cure nor take over.

We learn River loves the piano in the Child Life Room

The Basics: River is given 4 boluses of water a day, following a meal, and one night time bolus of Compleat Pediatric formula. Miralax is given daily. Each of her boluses are around 165ml. On some days we gave her less water to see if it would stimulate her drinking. Usually it just caused constipation.

Day One: Drive to Seattle. The first day is a lot of get-to-know-you stuff. Peggy needs to get familiar with River. We share three meals together. Set goals for River which include: drinking milk 3-4 times a day, increasing eating speed(meals should only be 20-30 minutes for maximum benefit). We make River comfortable. We go to the playrooms for breaks. Drove home to Fircrest, packed, returned to SCAA House to check-in. No pooping, already showing signs of constipation which is a major killer in babies wanting to eat.

Day Two: Take shuttles from SCAA to SCH (learned riding on hospital shuttles is the most uncomfortable form of transportation EVER). Today focused a lot on River’s drinking. We thicken all her drinks with Simply Thick now, to half nectar strength. We discuss all manners of calorie boosting. We limit water boluses. The best drinking day, drank 11oz. 3 poops.

Day Three: We begin to learn that River doesn’t ever want to eat until she’s been awake for 30-60 minutes. We soon turn an early breakfast and a morning snack into just One meal in the morning instead of two. River brings a stuffy everyday and almost never lets go. We notice major distraction and tiredness in afternoon. Drinking was only about 5.5oz. No poop.

Day Four: River continues to show off her good eating skills and the variety in foods she eats. 7 oz of drinking. Finally a poop at bedtime. We discover Lunchbox Laboratory, our new favorite eating spot in Seattle. It is down the street from the SCAA House.

E eyeballing R due to sharing of his beloved Cheetos

Day Five: A good drinking day, 9 oz. We experiment with coconut cream in her milk. Today we have our first shared meal with Ezekiel! We hope it will help him since he is not a good eater, he likes food, but only swallows liquids and spits out solids. He’s an extremely cute and intelligent 3 year old. Got to go home today for the weekend!! Took family to Lunchbox Laboratory for dinner.

Day Six & Seven: at home, more relaxed, but stick to routine established at SCH. 5 oz of drinking Saturday, 6 oz Sunday. A little constipated again, only one poop. Continues to eat well. Try out mixing milk with heavy cream. Return to SCAA House Sunday evening.

Day Eight: A good drinking day with 10.5 oz(5.5oz in one snack of milk with cream). Learned to start offering only a tiny afternoon snack with a high-calorie beverage, try to focus on drinking only for this time of day. Best trick is to stick her in front of Yo Gabba Gabba with a drink and assist her as she’s zoned out. This tv method is used often for the rest of the week. Although no body likes this as a long term solution, but as a short-term solution it’s actually approved. Best to find and use all tricks to learn to eat and drink more, before then eliminating such tricks.

Day Nine: Starting to think that offering sweeter drinks is not the key. 5.5 oz of drinking today. Experimenting with different drinks added to half & half. Constipated again.

Day Ten: Today we had another shared lunch with Ezekiel. About 6 oz of drinking this day. Mostly offering just whole milk mixed with cream(yum right?). Still Constipated, seems to be affecting her appetite.

Day Eleven: Started adding prune juice to her boluses. Drinks about 9oz overall. Finally poops! Another shared lunch with Ezekiel and family. Start resorting to such foods as Velvetta mac and cheese for higher calories. Can’t be healthy all the time I guess!

Day Twelve: Finally things are moving along(in her bowels). We have our last meal with Ezekiel and say farewell! Wrap up with the dietician and feeding therapist and take home a new plan.

Enjoying some Tootsie pops

What we accomplished/learned: 2 weeks of hard work for one. 2 weeks well spent with my daughter. 2 weeks of learning. A new nutrition plan. We learned that with this calorie reduction River was able to support on average 700-850 calories a day orally. We are able to reduce her formula boluses. We will continue to bolus her water and whole milk(for calcium) throughout the day, and one formula bolus at night. River expanded her textures, she is now more willing to combine textures such as creamy on a crunchy! She’s learned to drink more in a day, but only with a lot of persistence on our behalf. We’ve learned she still loves food variety and there’s nothing beneficial about offering routine foods, only routine meal times. 2-3 hours between each meal is extremely crucial. Time it takes to consume a meal is really important as well. It use to take River sometimes 40 minutes or more with her food, we know we need to encourage her to limit that now. After 20-30 minutes you begin to feel less hunger regardless of how much you consume, so getting as much in in that first 20 minutes can really make or break a toddler’s meal and it’s nutritional value. We’ve learned it’s ok to use certain rewards, like a TV show during a snack if River is not interested. It suddenly takes the focus off the food/drink she may be refusing, and suddenly it might get her to take it. If she gets disinterested or tries to leave then the show gets turned off. It’s been working. Desserts are a good thing, offer them more often. Add cream to anything you can. Add calories as much as possible. Adding a bedtime snack has turned out to be crucial as well, sometimes it means 100 calories to her day.

Now that we are home: constipation has not returned thankfully. Drinking has declined. We have 3 future follow-ups with the team and will also have to work with her local feeding therapist on River’s new goals. Maintaining the meal and bolus routine is really important, but definitely hard on us. It seems that WE are the ones that need to change more than River does. Yes this is all for her, all to eventually get her off the tube. But it’s us that are the ones that have to focus and accept change and stick with the plan.

Would I do it again even though it didn’t offer a miracle? Yes. Would I recommend it to others? Depends. How easy it for you and your family to take 2 weeks away and learn perhaps, depending on how involved you are, a whole new way of doing things? For reluctant parents I would definitely push it. If you are reluctant then maybe you are seeing how much effort and change it would require on your part and not the child’s. Then it’s definitely a program for you. For those, like myself, that are already mega-involved and super advocates for your child, maybe it wouldn’t take 2 weeks to learn a lot of these lessons. Maybe you can take it from those that have already gone, read the blogs, try out new routines and new tricks, try a little (supervised) calorie reduction at home, and maybe if you are consistent you can accomplish a lot of these things without leaving your life for 2 weeks!

A Busy Summer

It’s been a very busy summer with the whole family! River and Ewan and I spent a near month in Utah visiting our family and friends. We traveled from Washington through Idaho, into Montana, down through Yellowstone, into Wyoming, and on to Utah. 1200 miles one direction! The kids did great on the road. We got to see many friends and family along the way, and then spent many hot days down at our relatives. Highlights of the trip were the many water slides we encountered. Both Ewan and River went down them from the first time in their lives.

Old Faithful, Yellowstone, July 2, 2012
Practicing the hoola hoop

Now that we are back home after our long trip it’s back to business with River’s treatments. Throughout the summer River has improved in her motor skills, her walking and running and jumping have all gotten better! She’s getting faster and taller all the time! Her drinking fluids also improved during our hot months. She’s up to around 5 ounces a day now of oral fluids, which is a pretty big improvement over around 1-3 oz. in a day.

Waiting for the geyser

Last week we had feeding therapy with Jennifer and she managed to get her to eat half of an avocado and drink a juice box. Those food themselves are not unusual but the amount was! Although River is usually full of energy and couldn’t sit still during the session, she mostly ran back and forth. We’ve also decided to stop the use of the Periactin, we think that it’s usefulness has declined(which is typical).

This week we’ve traveled back to Seattle Children’s Hospital for an appointment with the nurse practitioner that works with the Intensive Feeding Clinic. She wanted to clear River medically so she can attend the clinic. She was very impressed with River’s progress so far, and her previous weaning, and overall condition. She gave us more insight into the program, and assured us she will try to help us find a way to stay up in Seattle during. So far this will prove the biggest challenge. I spoke to the Ronald McDonald House last week and we are a whole 4 miles too close to qualify for housing. Yes that seems ridiculous but they must have their guidelines. But they may make an exception. We also have to go through her insurance first to see what they will cover as far as housing and/or gas. We may end up doing the drive everyday (which is of course a last resort for us). It’s a two-week long program (10 actual days), and the commute would be over an hour in each direction usually. The NP also wants River to get a swallow study done. She’s never had a real swallow study, and they have to be completely assured River has no swallowing dysfunction before attending. So that’s on the books soon. So we definitely have some details to work out before we go to the Intensive Feeding Clinic. But we are scheduled to go September 10th.

Today we go back to Jean for physical therapy. River needs to be seen periodically to make sure she’s progressing. I believe Jean will see many improvements. Next week we will check up with her GI clinic. Also I scheduled a check-up with her neurologist. He previously saw her for her Horner’s syndrome back as an infant. I have been wanting to follow up about her eye for sometime. There are times when she has her left eye closed all the way, and I’m concerned it’s impeding her vision, or going to cause her eyesight to decline faster. We may need to see her ophthalmologist sooner than expected as well. We will also be discussing possible balance or other neurological conditions that might be causing River movement and gait problems. She does lose her balance easily and appears to get dizzy at times, especially on a nonuniform surface.

So there will be many new things coming up for River this month and next! We are still working at having a great summer as well. We will be leaving this weekend for the coast, and we are very excited to show River the ocean(not just the sound) for the first time! The kids, even the dog, get to have another great adventure soon.

In other toddler news: we had a recent potty training attempt. It will ill-fated though. I know River is ready to start, she is showing great signs and interest. We bought the undies and got the potties out. We are also trying to move our rooms around in the house and I spent the weekend cleaning and painting the upstairs room for them. Daddy spent the weekend also cleaning and working. We just didn’t have the time to dedicate to potty business. Next week things will be a lot more settled and we can try again! 

At the Girls’ Lunch, she loves Salmon!

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A few new things

So this week River had a series of new things: first, she had an eye appointment, then her first OT appointment, she also got a new pump this week, and we have big new plans!

She saw Dr. Deem for actually the 2nd time. He was the ophthalmologist that checks the retinas in preemies at the hospital. He saw River when she was about 2 months old. We were visiting for several reasons which I won’t get into, but not because we were concerned about her eye sight. Turns out we might have to be. First to say is that the anatomy of her eye is totally normal and healthy! Dr. Deem was super good with the little ones, and River behaved pretty well at this new experience. Her Horner’s Syndrome is still very present, although he doesn’t think it causes her sight problems. He did say that she was developing an astigmatism. That’s the bummer news. I have astigmatism and it makes me terribly nearsighted. I got my first glasses I think in the 5th grade. I believe River may be needing correction at a much younger age unfortunately. But he doesn’t think he needs to see her for another year!

Sweet girl with her new backpack pump

After that we went to her first OT appointment. It went swimmingly considering she keeps refusing to nap, but obviously still needs them. She sat in a swing for a long time! The OTA says that River will get more comfortable with her balance and her sense of movement by working on such things as playing on moving items, swings, slides etc… and getting her feet up off the ground. We hope this helps her want to learn to walk!

The other advancement this week was getting her new Infinity pump. It’s smaller, lighter, and she can wear it as a backpack! We do this about once a day, but the hope and dream is that she won’t need it for very long!

I was inspired by a story I heard recently, and it led me to read about several inpatient feeding clinics in the world, and some research that’s been done about weaning children off of their feeding tubes. I decided that it’s time to give it a try, here at home, a short weaning program over two weeks. The last two weeks in December are the most ideal since i’m off of school, and am staying at home, and my mom is coming to town! I’ve spoken to her dietician, and even Dr. P her GI doctor is onboard! We are super excited and we believe whole-heartedly that River is ready. She has a high interest in food and wanting to eat lately. She has been teething in her molars and it’s made her congested and drooly and uncomfortable, but that comes and goes. She nibbles all day long, not enough to count, but she always wants a bite of our food. I really believe if we can shut off the tube feedings and get her surrounded by food everyday that she’ll take off with her consumption!

I’m going to loosely follow the program that they do at Seattle Children’s Hospital, and the Graz clinic in Austria. I’m attaching a paper that I read that is a medical research paper regarding the success rate at this clinic in Austria and what they do. tubeweaning-paper-nov-081

I’ve found this mom’s story nothing but joyful and tear-jerking to inspire me: http://www.anunexpectedpath.com/gias-tube-weaning-story. And here’s another great blog on tube weaning: http://lifeandtimesofstella.com/tube-weaning-resources-and-tips/

I still have a  bunch of planning and reading to do, and we have an appointment with Dr. P on the day we plan to start, December 16.  We will go through just after Christmas. We are visiting the family back home and leaving on December 29th, so we will wrap up our attempt by then. We have great feelings about this! And even if she’s not completely weaned, which I think is not possible at this time, it could take her up to eating 50% or more of her daily requirements! I’m really hoping for that! Also we are looking for other babies to come join us for our daily Play Picnic in my kitchen for the weaning period! It will help River to see peer models playing and having positive experiences with food. Anyone up for getting messy??!?

A new phase

So we’ve entered a new phase of our lives, River and the family are slowly adjusting. I am slowly adjusting too. At first there was definitely expected upheaval and tears! River is getting to know Patty and actually things are going pretty well. Her appointments have definetly suffered in frequency, PT is about once a month, and feeding therapy will resume this week at about twice a month. Recently she had follow-ups with both Dr. Morris (Neurosurgeon) and Dr. Pickens(GI). First off kudos to Daddy who had to do both of these appointments by Himself!! I was away for 4 days(longest I’ve ever been away from both the kids, mostly River) on a school field trip to Mt. Rainier (I’m in a geology class).

River's understands now what cameras are for!

Dr. Morris: River’s scar recently has “acted up”, not oozing, but swelling and looking gnarly red near the lowest part of the incision. Dr. Morris assured in his most mundane and unexcitable manner that it was stitches working their way out and that maybe we could apply a little bacitracin, but not to be overly concerned. And other than that the appointment was uneventful (from what I heard second hand).

Dr. Pickens and the GI clinic: This turned out to be a very lengthy appointment for Pete and the kids, but he wanted, and so did Dr. P, to be very thorough. We really want to get River off of night feeds. We have, prior to this appointment, feeding her nearly 500 ml at night, and only getting about 600 ml down her during the day. During the day it was blenderized diet(BD), and at night it was a mixture of milk and Organic Pediasmart. The highlights of the appointment were that River is growing great! She’s hovering around the 50th percentile still for weight, which is consistent and they are not concerned about calories. She weighs about 24.25lbs!! And our backs can tell. Pete and the dietician and Dr. P worked out a plan to bump up the daily feelings and Dr. P wants us to give them so her way slower than we have been, he explained that the way we were giving the syringe feeds were much too fast and were actually slowing down her digestion which would explain why it seemed she couldnt hold as much as she should logically be able too. Instead of two 70ml syringes (which we now use the Toomey syringe and it’s way better!) an hour it’ll be three 70ml (or roughly 200ml) an hour and it’ll take 45 minutes to slowly inject them. And do that 4 times a day. It seems like a huge giant change right? It is!! It is really time consuming and has been pretty difficult on all of us. The flip side of that though is that she is getting real food. To make it simpler on everyone we would stick her on a formula and a pump four times a day, in a backpack attached to her. Which is what most people do.

We are torn as to what to ultimately do since this is a huge commitment. We may think of getting a new pump and backpack for her and doing a 50/50 version so as to make it a little easier. The blenderized diet is thick and heavy and doesn’t move through a pump unless really thinned down, then it’s more like a homemade formula and you aren’t getting the benefits of having thick heavy food in your stomach. The thicker it is, the more it actually stays down, and helps with vomiting. We are super reluctant to give her more thinned-down blends. But spending 3 broken up hours a day on pushing a syringe and trying to get a toddler to hold still is pretty challenging as you might imagine. The good news is that 200 ml in an hour, going super slow, seems to be working so far. There has been no increase in vomiting because of it. And now her night feeds, on a good day, are down to about 330ml. And we are hoping to keep up the trend. In 2 months we need to check in with Dr. P and if there is not enough progress he may want to give her more gastric testing (we definitely don’t want this).

Physical therapy this week was a check-up with Jean, and while River’s skills have certainly improved, she is still not walking. And she was extremely uncooperative with us that morning, acting like a typical toddler and giving lots of attitude and independence. We will check in with Jean in another month. Feeding therapy this week, after a short hiatus, with Jennifer was another story. It went fantastic! River was actually interested in the food (of course I fed her less to get her hungry) she cooperated as much as a toddler can, and she discovered a sippy cup(Zo-Li) that she totally loved and drank an ounce from. We were quite encouraged. And of course Mommy went home and ordered a Zo-Li sippy cup off of Amazon.

As far as River’s adjusting to the new life of College Mom, it’s turned out well! Once the initial outrage of me walking out the door or whatnot has passed, she quickly settles down with her surroundings, she’s become more comfortable with Patty, and even Patty’s car. She appears to be connecting well with her new “family members”! With our new hectic schedules and busier lifestyle, this certainly helps to alleviate my emotions!

Some updates

In a few days our lives are going to change a bit(understatement) when I return to school. Basically like going back to work I’ll be gone most weekday normal hours. My River will began a new phase in her life with the transition of having a nanny! I am super nervous of course! I have been a stay at home mom since losing my job when I was pregnant with Ewan! Some part of me wishes I could give as many years of SAHM to River, I feel that I’m taking something away from her, but everyone says it will be fine, even the doctor. So I’m going forth with my decision and placing our families needs and my own in front of her having me 24/7.

River and I at Snoqualmie Falls after the walk

But on to the updates! Last Sunday we attended the Puget Sound Walk for Apraxia up in Snoqualmie. It was so great to see an event like this for kids with this condition. It was small, but they raised an amazing 8K for the cause!! We were able to meet and play with families like us. Ewan immediately took to playing with 9 year old Samuel who has a severe level of Apraxia.

River has recently had many feeding therapy and physical therapy appointments, which will soon go down in frequency due to our new schedule. She definitely experienced a setback in all departments due to her back surgery. Just in the last few days she seems to be back to the level she was at before surgery.

River with her PT Jean and some shaving cream

Yesterday she had her 18 month check up! It went great, although the 3 shots River got might make her disagree.

She weighs a giant 23lbs 5oz! And she is 31.5 inches tall. That puts her at the 36th & 46th percentiles! She has been a little feverish since the vaccinations and I just hope that ends soon, we have our last feeding session today for 4 weeks. In about 3 weeks we will have her GI clinic visit.

Ewan will begin kindergarten again following a gnarly teachers’ strike here in town, River will begin hanging out with her new buddies, I will begin my new college career and Pete, well Pete gets to do more dishes and cooking in the near furture. I’m sure my blogging will suffer some but I will continue to keep up on it when I can!

The start of the Apraxia walk
Daddy and Ewan in their orange tees
In feeding therapy with some flavored tongue depressors

One Busy Summer!

Me and some boy with a grimmace, and River in the cutest swimming suit!

It’s been a while hasn’t it? Our summer has been very full, and thankfully I’ve enjoyed it! We returned from our month-long visit in Utah at the end of June. We jumped right back into appointments and therapies, outings and swimming lessons! Utah was a great experience for my children. We all had fun and got to visit in-depth with our many family and friends.  We will return next year for another long Utah vacay. One way to describe our summer is that I am just now uploading my photos from my camera, 330 photos are transferring to my harddrive as I type. Yes I’ve neglected a ton of work lately!

Let’s get to business: River is doing great all around! We had our 6-month cardiology clinic with Dr. Obayashi a week ago. He was very excited to see us after such a long stretch, and River’s results are completely fabulous. Her heart is operating on par with a normal heart. There is no holes or leaks(murmurs) anywhere. Her repaired areas are all looking great! Couldn’t be happier with that visit! We won’t return for another 9 months to check up again.

As far as River’s oral feeding go, they are moving in the right direction! She is still not eating what I would consider countable. I don’t count any of those calories because they are not enough to even bother keeping track of. A cheerio here, a veggie stik there, a few bites of soup over there. But she is very willing to try new things and always wants some of what we are putting in our mouths. She shouts and reaches and even shows her tongue if she wants some! She, of course, still has the occasional vomit due to gagging on food. But these are getting better and less often. She drinks water now all the time. I always make sure she has a cup nearby, she even has been using straws lately! I am just about to start measuring the amount because I think it’s on the cusp of being significant fluid intake. Not quite yet, but soon! Here blenderized foods are also going really well. We’ve recently been able to increase her intake, her tummy seems to have grown! We can now do 4 oz. at a time, and we feed her four meals a day. We’ve also introduced dairy yogurt and whole cow milk. I had previously had her on soy/hemp/rice milks, we always thought she was a little dairy intolerant, but that seems to have changed or gotten better.  I still give her alternative milks, but having some whole milk does increase the calories!

Physically River has gained tons of strength since June. She is called “scooter” by some. She scoots her butt around anywhere now. She loves to play on the floor, and often gets up in a all-fours stance, sometimes balancing on her head. She can crawl. I say that tentatively because she chooses not to crawl. If we hold her legs in a crawl position and encourage her, she will crawl around, but still hasn’t realized this is a valid form of transportation! She is also beginning to enjoy walking with us holding her hands. It’s still very unbalanced but it’s a start! She is also on the cusp of pulling herself up on everything. She has been caught several times recently standing against something all by herself! I am starting to be concerned about her neck though, her torticollus neck has made an appearance again lately. I’m not sure if this is because she is developing her other physical skills and her neck is taking a back step? We will see our PT next week again, so hopefully she’ll have a good solution.

In other news, we are attending a CHD awareness walk tomorrow! I just heard about this last week, but since we had nothing else going on how could I say no?!?! Here is the link on that: http://imhwalkforchd.kintera.org/faf/home/default.asp?ievent=470071

We have a few upcoming appointments for River, next week she will have her genetic consultation. We are not sure what will come of this, but the reason we are going is to find nothing. I want to know for certain that nothing has been missed. In 2 weeks we have a consultation with a neurosurgeon (finally). He will just be reviewing that MRI River had back in April. Hopefully he will have more of an answer for us on this possible tethered cord syndrome.

Now it’s time for photos!

Uncle Dan, River, and Aunt Becky
Grandpa and the kiddos at the Museum of Ancient Life
Nana Diane, Ewan and River at Hogel Zoo
Ewan and Lily at Lagoon
 

Cookies n’ Cream

Making a mess

Latest advancements in eating technology: the messier the better!

River’s accomplishments lately have been astonishing in tastes and textures. Not so much in volume. It’s still a real challenge to get much food down her, but she is getting more and more comfortable with her tongue actions, and with experimenting with new flavors and types of food. River and Ewan have just recently contracted a fun little cold, and passed it on to me. This, as usual, sent River back into vomit-land. But even that can’t keep her from putting things in her mouth. She bounces back like throwing up is about as bad as sneezing. Even with this nasty short-lived cold, she tried her first chocolate cookie last week, and ate it! I couldn’t believe my eyes.

The real challenge, that has presented itself, is how to get River to eat more and of the same foods (the safe foods). The chocolate cookies quickly became old news. We’ve tried other cookies. Great at first, then not as fabulous or exciting. Whenever she reaches for our food now, I freely give her a sample (being fully aware that a vomit could happen, usually with a towel in hand) and on her own terms she will give it a taste. She has even eaten several pieces of popcorn stolen from daddy’s bowl. The gags still happen sometimes, but as time goes on, they become a little less frequent. I still see a very long and slow climb up the “eating” hill. But we are still climbing!

My new technique is to sit her down, put some food in front of her, and walk away. She is more willing to experiment and taste if we are not the ones in control. Miss I Do It Myself. Usually it’s a real messy food! Applesauces, yogurts, crumbled cookies. She does do good with the freeze-dried yogurt drops. They are a big hit and I can usually rely on her to eat several a day. The other thing she enjoys is drinking water, usually from an open cup. Usually this means a large spill, a change of clothes, and more messes. At feeding therapy this week, Jennifer helped River experiment with different types of sippy cups. The trick is to find a good cup that won’t create such a huge mess! Sure there are plenty of “no-spill” cups out there, but that would require her to really give them a good suck, and she prefers things to just flow into her mouth with ease, none of this “sucking” business! In the meantime feeding/drinking time = mess and big clean up job for mom time. It is what it is! I think I would like one of those rooms with a drain in the floor and a spray hose.

In feeding tube news: River’s blenderized diet is coming along well! I feed her a mixture that I make up daily. It makes up about half of her dietary needs for the day. She is still receiving a continuous feed of soy formula at night. Next month is her GI follow up, and we will see what they say! Am I doing a fabulous job of feeding my daughter and should I not change the plan, or are we going to need to start changing something, like perhaps weaning her off of these night feeds? Or is she still too young? I don’t know, but what I do know is that River seems to be growing huge in our eyes, and happy, and progressing. So I expect nothing drastic to change any time soon.

And thanks to all of the feeding tube social networking that is going on I have connected with several mom’s that have been using a blended diet longer than I and have given me lots of good insight and help! Thanks to Feeding Tube Awareness on Facebook http://www.facebook.com/pages/Feeding-Tube-Awareness/171684552853896, and Jodi Berndt at http://alliesabnormalappetite.blogspot.com/ for giving me some of the recipes she uses for her daughter! Learning how to calculate calories and draw up recipes from scratch and make sure your child is getting enough fluids and calories in a day to grow and stay healthy is a science! Not too mention vitamins and minerals, something I don’t have to worry about yet because she’s still on a formula. And that’s why people go to school for it and become dietitians. Too bad I didn’t do that as a job, maybe I’d be good at it and actually get paid! Thankfully I’ll be able to conference with River’s dietitian next month on this and see if I’m doing a good job at it.

River with Jennifer at weekly feeding therapy

Inconclusive is so not helping me

This week was the big MRI. The MRI that we’ve been putting off for a long long time. Finally, it’s over, or so we thought.

Let’s get right to the news about it. The answer is inconclusive. They cannot yet make a definitive diagnosis if she has tethered cord, or any other condition. ARG!!! We hate not knowing! The doc said that he will pass along the test to a neurological surgeon to see if he can come up with more answers for us. What they did see in the MRI was that her “conus”, the base of her spinal column, is still low lying, just as it was with her initial exams when she was still an inpatient as a preemie. But they could not see any masses, or anything that would for sure point to a tethered cord diagnosis. The other thing of note, is that her conus is more posterior, rather than centered. Since she is not experiencing any clinical symptoms of tethered cord syndrome, that is another reason they cannot diagnosis and treat it. Hopefully the Neurosurgeon can give us a good opinion.

Here is River and I waiting for her MRI, she is feeling very relaxed after being given Versed. She received an IV in her hand, and then was eventually given Propofol to fall asleep for the 25 minute MRI. She was actually quite silly to watch being sedated. She fought it, but in a happy cooing way. She waved at the nurses, and babbled a lot. The MRI experience was very benign for her, thankfully. We want to avoid any medical related trauma for her, naturally.

But in very Conclusive news: River is doing fabulous with her feeding therapy and oral skills!!! This week was a great one for oral advancement. This week during our Mended Little Hearts meeting, we were trying to entertain her with a water bottle, and the lid, she loves playing with lids of all types. I noticed her suckling at the lid edge when I was giving her a sip of water. The next day I gave her a bottle (baby bottle) of juice, I was able to get her to suck a few times. She is very willing now to take a bottle nipple in her mouth now, mainly to bite on, but still she gets the juice out and swallows it. This is just great! She opens her mouth wide for me to put in if she’s in the mood. She has even tried out a few new textures this week. Applesauce and some yogurt melts, both which previously elicited gag response from her. She is doing well with both of these this week! She is actually eating maybe TWO teaspoons worth of food a day, as opposed to her one teaspoon that she’d been achieving.
We are all very excited with these noticeable changes!

Food play with Brother

We’ve been getting out the play food and play pots and pans for her lately, and she loves them. Ewan jumps right in to play with her, and she gets a ton of encouragement from him to put spoons and food in her mouth. You can’t see it very well, but there is applesauce all over those toys, and anything she puts in her mouth she gets some flavor, and then we will also give her a spoon of applesauce during the play and can usually get a bunch of bites down her. What a good girl!  And as soon as she’s ready to be done, she is effectively using the “all done” sign! She loves to tell us All Done now, whenever we are doing PT exercises, feeding her, or trying to put her to bed. LOL! She knows what she doesn’t like!