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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The Periactin Reaction

Finally! Yes an update has come! I’ve been so busy lately, it’s hard to get 5 minutes!

She "smiles" for the camera

River has just completed 3 weeks on Periactin. She had the first week at half dose, then 2 weeks at full dose. She’s been off it for several days now. There was definitely a difference when we started it, we could tell right away that her appetite went up. The last 3 weeks have been at least double in her oral eating! She seems to be loving food right now! It’s been incredible. It’s hard to say how much of that is Periactin though? We really don’t know, but it certainly occurred at the same time as starting the drug. She is just starting her week off rotation, and they said to keep an eye out for a decrease in appetite. So far I don’t think I’ve seen her decrease. We are still waiting to discover how much we can say it was the drug or not. Only time will tell.

I haven’t weighed her since her last weigh-in at the clinic, but I believe it’s safe to say she’s having a nice slow increase, my arms hurt more when I carry her around! Her chub is beginning to return to her thighs too. It never fully left, but the fluffiness is more noticeable. It’s been nearly 3 full months since we started the wean, and I think we are safe to say that we have a  50/50 tubie baby! She is no longer 100% tube-fed and I feel extremely happy and relieved with this number! Three months later and something significant has occurred. Also my high-tension and erratic emotions linked to it has begun to wane as well. I feel we’ve gotten into a nice rhythm  of tube feedings. She get’s 3 boluses a day directly following a meal, and we give her around 250ml-300ml in fluids at night. Her fluid intake is still on the poor side, she doesn’t really hydrate herself, and if anything, that’s what the tube feedings are for, and why not throw in calories as well? If I see her reach her weight growth curb again I will know we are in the neutral zone and we won’t need to do anything more than keep her on that curb. I feel that in the near future, when everyone is happy with her weight and growth again that we can try another attempt at full weaning.

Ice Cream Face

And thank goodness for our upcoming consult at Seattle Children’s’ to help us work on all of that! We have an appointment set with their Feeding and Growth team, in April! They have a rapid wean program there, which we are going to determine if River is a candidate for, and what all that means. Her current feeding therapist, Jennifer, is very pleased and excited about River’s new oral skills and has seen huge improvements, a different baby she says! So I think having some extra feedback and strategies from Children’s should be very useful.

And in other tubie news, we’ve stopped her blenderized diet indefinitely! And although it was such a good thing, it’s a lot of work! I believe in it whole-heartedly and would recommend it to any other. But since River is getting a diverse selection of food she is eating herself, we’ve been supplementing with Pediasmart for the other portion of her daily calories, or whole milk when I don’t have any mixed up. It’s about 30 calories per ounce, and we also put a little in her night bottle so she can get a taste, and maybe one day be willing to drink it straight!

And in heart baby news: I’m very excited to announce that in Spring quarter, starting in April I am launching into a self-directed project at school that will focus on congenital heart defects. I get to work directly with River’s cardiologist for one portion, I’m going to illustrate River’s heart (pre and post-op). I’m thrilled that I get to do something like this that I’m so passionate about, and hopefully it will teach me a lot, as well as the ability to spread awareness to others through art.

Mmmmm

 

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