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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Friday, January 30, 2015

A bit of January

Since I haven't done much updating this month, I thought I'd throw it all in one post.

Little Bit started figuring out how to knee crawl just before her 11 month birthday. 2 weeks later, she still mostly army crawls but she's starting to knee crawl too.
She also discovered that she loves the ball pit at therapy. Given that it took us somewhere between 18 months and 2 YEARS to get Raya in it without having a cow, I didn't expect her to like it but she did. I laid her on top of the surface and she just laid there, completely still. She slowly sank down into the ball pit and had a great time grabbing each ball that rolled into her face and flinging it. She also enjoyed kicking her feet. Even when her face and body were completely covered, she was still happy and didn't get scared or cry. That's the kind of experience that reaffirms for me that Raya has just been wired differently since before she was even born.

We were able to get Raya fitted for a new medical stroller that will be similar to this one, only pink:

We have GOT to start putting baby toys in the diaper bag so that Piper doesn't have to keep playing with feeding tube supplies to keep her occupied during church. Although she probably prefers the feeding tube supplies anyway.

We just changed to the 8:00 time slot and let me tell you, getting 5 kids and 2 adults out the door for 8am church has been a beast. I think the closest to on time that we've been is 8:15 and I was pretty proud of us that day. I haven't found my rhythm yet with getting all of Raya's morning meds & formula bolus prepped before church, pumping a bottle for Piper, getting myself and 2 little girls dressed and doing several people's hair. Oh, and breakfast for me has not happened yet. Clif bars and Odwalla bars have kept me alive for the past year or so. Last week, we were in our seats at 8:30 and then had to give Raya her meds. Normally I take her to the nursing mothers' room so we don't make a spectacle of ourselves but since we had JUST gotten there, I figured what the heck, we'll just do it right here.

We had a run-in with influenza A last week and I was reminded last how much I dislike going to the pediatrician's office and why we avoid it like the plague. If we had hazmat suits, I would make all of us wear them when we go there.
It's silly to have a "sick room" when you have to walk through the regular waiting room in order to get to the sick room, and when people keep their sick, hacking, phlegmmy little kids in the regular waiting room. People looked at me like I was some kind of monster for sending my sick child in the sick room alone but I wasn't about to go in there myself, or take my 2 healthy kids in there to wait. I was worried that it would ravage through all 7 of us but Tamiflu and our awesome quarantining skills kept it isolated to 1 of the 7. Not gonna lie, I'm pretty proud of that. (knock on wood...stay healthy, kids...) Thankfully, the child that got sick was not one that has had any chronic respiratory issues and the Tamiflu and other stuff we used really did make a difference and turn things around quickly. Thank God for modern medicine.

We got the game "Scattergories" for Christmas and the kids LOVE it. We've had so much fun playing it with them. Raya is too young to play but she likes to sit at the table with us and write on a Scattergories paper just like the big kids. Since we always play after dinner, she usually falls asleep while we're playing. I just love sleeping children. Few things are as beautiful as a sleeping child. The past month has been a struggle for her (and us) in a different way than we've had before, so having her calm, quiet, and peacefully sleeping is a beautiful thing for all of us.

We've had a bit of a problem with a certain little redhead stealing her baby sister's special blankies. She has plenty of special blankets of her own, but Piper's blankets are "super soft and cozy" and she really REALLY wants them. The solution we came up with was for Raya to do jobs to earn money so she can go to the store and buy her own blanket like Piper's. It's definitely more work for me to supervise her with all these jobs but hopefully she is learning something. Her first one was to scrub a frying pan that the big kids had forgotten to wash when they did the dishes. She needed a lot of coaching but she did a great job!
She also helped me pull weeds in the garden. There were more weeds than vegetables and it was a big job that we didn't finish before all the rain started, so there will be more next time we go out, I'm sure.

Last week, we went to a friend's house after school and they just got a soft, fluffy kitty for Christmas. My child who thinks she is a kitty was beside herself and could not get enough of him! She told me on the way to school this morning that she wishes she had a magic wand so she could make herself a real kitty.
The other little girls were pretty enamored with him too.

Speaking of thinking she's a kitty...  Sometimes I walk into the kitchen and find things like this:

In other news, we have had some good meals lately where she eats enough calories that I should probably be counting them and deducting formula. I made beef stew for dinner one night this week and she ate about 1/4 cup of it. I absolutely LOVE when I am able to make something for dinner that she can eat along with us. It's not an easy task with the things she is allergic to but I'm working on it.

After some discussion about everything we learned from the motility testing last month and what we know about Raya after working with her for 5 years, her feeding therapist and I decided that now is a good time to start pushing her again. We are pushing her on the variety of things she is eating and pushing a little more on the quantity, although we are still sensitive to how she is feeling when she eats. This week, I brought a diced peach fruit cup for her to eat. She wanted a baked potato like always, but I really want to get her out of the baked potato rut so she doesn't end up developing a reaction to them. She likes peaches and she has eaten them before but I knew it would be a challenge for her. I opened the cup and drank half of the juice out of it so it would be easier for her to get peaches out without spilling.

I was right about it being a challenge for her. By the time we finished the session, she had eaten about half of the fruit cup, which was great, but it was really hard for her. She gagged a few times and if she saw any juice on the spoon with the peaches, she really struggled to make herself eat that spoonful. She did a great job though and we were both very proud of her. It's funny, the way I feel when I watch her have a good day at feeding therapy is the same way I feel when I watch one of the big kids nail their forms in a karate tournament. She has to work SO hard to make herself want to eat. On the way out of the clinic she was excited about the Rudolph stamp on her hand and was chattering on about how she worked really hard so she could make Miss Heidi proud of her and make me proud of her. It melted my heart a little but also made me think about the importance of teaching her that making other people proud is nice but that she needs to eat for nourishment, not to make other people happy.

 Moving on...
Yesterday we had our first accidental tube pull-out since probably October or November. Raya thought it was pretty funny, but she thinks everything is funny lately. She was messing around, probably pretending to be a puppy or a cat, and pulled the whole thing out of her stomach. Thankfully it was in between a bolus and her continuous feed so she didn't leak stomach everywhere this time.

 And then we have this sweet girl, whose skin is giving her troubles. Sad panda.
 We're not totally sure what's going on with her but we think it's food-related so we're doing what we need to do to figure it out. Everyone who has seen it has generously offered me theories about what it is and what will cure it. haha. Thankfully, it has gotten MUCH better since I took those pictures on Sunday and Wednesday.

I had a friend tell me recently that she had seen something I posted on facebook about how well Piper was doing with eating solid food, and it had made her jealous/sad/angry. She has one child with eosinophilic esophagitis and a baby that is suspected to have it as well, and they have struggled with food with their baby. She didn't mean that she was jealous/angry at me, but just frustrated that they were going through much of what they'd gone through with their other child all over again and she wished she could say the same things I was saying about how great things were going. I totally get that. I remember feeling the same way while I sat in church watching my friends feed their kids Cheerios and crackers to keep them happy & quiet and not have to clean up vomit.

The truth is, I do have some concerns about Piper and she does have some issues, I just haven't been vocal about them like I have with Raya's because they're not to the degree that Raya's have always been. With Raya, it was clear and obvious that she had something very wrong and needed intervention. And truth be told, I've gotten enough unsolicited opinions in the last 5 years to last me a lifetime and I really don't need it this time around. With Piper, everything that has come up has been met with, "We'll keep an eye on that and see what happens." So that's what we're doing. I've been taking advice from sources that I am comfortable with and I think we've managed pretty well. Suffice it to say that my mind does not work the same way now that it did before Raya was born and that is both a blessing and a curse!

Sunday, January 25, 2015

The Backpack: A story of faith and prayer

This is the story of an experience Raya and I had while traveling for out-of-state medical testing in December 2014.

Aside from not being prepared for the rain that had instantly soaked us to the skin, I couldn't believe how smoothly everything was going. We had made it to the airport in plenty of time to catch our 6 am flight. Airport security had been a breeze in spite of all of our medical liquids and equipment. The airline staff had made boarding the plane worry-free, even with all of our carry-on bags and the cumbersome medical stroller Raya was riding in. The flight had gone by quickly and we had watched a beautiful sunrise from above the clouds. We had found our bus with no trouble, and the bus driver was kind enough to make sure we knew where to go and what to do when we got off the bus at the train station. A sweet woman who had overheard my conversation with the bus driver went so far as to escort us from the cold, rainy bus stop down to the subway platform and onto the train. We were making great time and had even gotten a phone call that the hospital already had a room waiting for us. Everything was going great!

Raya was chattering away, enjoying the new experience of riding on a subway train, and I was enjoying a chance to sit down and relax for a few minutes. And then halfway between the train station and the hospital, it hit me. We were missing a bag. A wave of panic came over me and I counted our bags again. 1-2-3... Where was number 4?? Frantically, I tried to remember what had happened to it. Tracing our steps in my mind, I realized that in the chaos of everyone getting off the bus, trying to get Raya back into her stroller in the pouring rain, and finding where we needed to go, I had left it on the sidewalk at the bus stop. I could picture in my mind the bus driver pulling the black rolling backpack out of the luggage compartment under the bus, and I could remember seeing it lying face down on the wet sidewalk as the rain poured down, but I hadn't recognized it. I could even remember the driver saying something like, "Let me get that out of the water for you," but I had been distracted by the sweet woman who was trying to help me get out of the rain and find the right train, and I didn't realize he was talking to me. I. Had. Forgotten. It. I had left it there and now it was surely gone.

How could I forget it?! That was so out of character for me! It had so many important things in it! As I waited for what seemed like forever for the train to get to the next stop, I tried to remember what I had packed in that bag. "My clothes. My electric breast pump. My glasses. My favorite pair of jeans. Oh no, was the iPad in there?! Whew, it's in the other backpack. Raya's prescription medications and extra formula. My makeup. My shoes. $40. The new shirt I got for my birthday a week ago. My pajamas. At least I have my manual pump in the other backpack and thank heavens my wallet is in the other backpack too. Raya's clothes are in her backpack. But all of MY stuff is in that bag. AND THE BACKPACK. I'm going to have to buy Donny a new backpack. Why am I not crying? I should be crying. This really sucks. I can't believe I did that. Everything was going so well! What do I do now?" I felt terrible and powerless. Right at that moment, I was stuck on the train and there was nothing I could do about it. I started talking out loud to myself. "I can't believe I did that. How could I have forgotten that bag?" Raya, who had been singing softly to herself, looked up at me and said, "What are you talking about, Mommy? What bag? Are you upset, Mommy? Why are you upset?" I lifted my head and told her, "I left our other bag on the sidewalk and I don't think we will ever get it back now."

Being in between stops in a subway car that smelled like rain and a bit like urine, there was very little I could do about the predicament I found myself in. Except for pray. That was the one thing I could do. I prayed my little heart out. I felt terrible that I had lost Donny's backpack. He had been kind enough to let me use it, even though it's his martial arts bag and he uses it all the time, and I had lost it. I knew I had made a foolish mistake by allowing myself to be distracted, and I wanted nothing more than to take it back but I couldn't. I don't remember everything I said in that prayer, but I felt depths of humility that I had not felt in a long time and pleaded with God to bring me peace and clarity of mind so that I would know what to do. I prayed that if it was God's will, that I could get the backpack back.  And then I knew that I had an opportunity and a responsibility to teach my daughter one of the most valuable lessons she will ever learn. 

"Raya, we need to say a prayer. We still have most of our important things, but all of my clothes and lots of my things are in that bag and I would really like to have it back, so we need to say a prayer that Heavenly Father will help us get it back." With a smile, she folded her arms and bowed her head and we said a prayer together right there in that subway car. Then I went back to my thoughts and she went back to hers. I was lost in myself when I realized she was singing again, and that she was singing about Jesus. Tears filled my eyes as I listened to the words she was singing. "Jesus, can you see our suitcase? We're in California. Can you help us find it? Jesus, Jesus, where is our suitcase?" And on she went in her sweet, innocent little voice. A scripture that I had memorized in high school came into my mind: "For my soul delighteth in the song of the heart; yea, the song of the righteous is a prayer unto me, and it shall be answered with a blessing upon their heads." (Doctrine & Covenants 25:12

 My prayer changed. At that moment, I wanted nothing more than to be able to show her that when we pray, God hears us and He answers us. For a little girl who was on her way to ANOTHER hospital stay for ANOTHER round of testing that would involve more needle pokes, more scary procedures, more nights away from home in an uncomfortable bed, more discomfort, and more traumatic memories, I wanted nothing more than for her to KNOW that God was aware of her and could hear her. At that point, it was no longer about the backpack or its contents, it was about the faith of a little girl. I wasn't sure if my faith was strong enough, but I prayed that hers would be, and pleaded with God to please hear her and not let her down.

The train lurched to a stop. I didn't know what to do and we were almost to the hospital, so we got off. We found the elevator, plugged our noses, and surfaced to find that the rain had slowed, but we were in the wrong place. In my distracted state, I had gotten off one stop too early. We rode the elevator back down, purchased another fare, and went back to the platform. As we waited for a train, I fought an internal battle with myself. Do I go back to the bus stop and hope that it's there, or do we call it a loss and just go to the hospital since the chances of getting it back are probably slim to none? I knew the hospital was waiting for us and it was almost the time when I told them we would be there to check in. I also knew that I had to at least TRY to get the bag. I wouldn't feel good about myself if I didn't do everything I could to get it back. 

With new resolve, I walked across the platform and we boarded the train back to the station. The closer we got, the more my heart pounded. As we got off the train, I walked as fast as my aching body would carry me to get back to the series of elevators that would take us back to the ground level. I waited in line at the bus ticket booth to ask if they had my bag. My heart sank when the ticket agent told me there were no bags in the booth waiting to be claimed, and that he couldn't call the driver to ask about it because their phones weren't working in the bad weather. He wrote down the name and phone number of the woman who would be on shift when the driver made it back to the train station on his next drop-off, told me what time I should call her, and took down my contact information and a description of the bag.

With that task finished, I called Donny to tell him what happened before we went back down to get on the train and lost cell reception. After shedding a few tears over the phone, I trudged back to the elevator to return to the train. I felt as dark and gloomy inside as the clouds that threatened to dump more rain on me. I felt defeated and just wanted to curl up in a corner somewhere, but it was time to check in to the hospital, put on my game face, and get this pivotal round of medical testing done. We got off the train, this time at the correct stop, made our way up to the sidewalk, and crossed the street to the hospital's main entrance. We found the admitting desk, signed in on the clipboard, and waited for our name to be called. Every so often while we were waiting, I would remember another item that was in my lost backpack and disappointment would hit me all over again. I knew everything in the bag could be replaced, but it would cost hundreds of dollars to replace it all. Christmas was one week away and we had just spent $600 on car repairs, so the thought of replacing everything I had lost made me heartsick. 

I tried to push those thoughts aside as I answered questions and signed forms. My phone rang while we were sitting at the admitting desk. It was the nurse from the 6th floor of the hospital calling to find out if we were still coming. I told her we would be up in a few minutes and we finished the check-in process. The corridors of the hospital were decked out in holiday decorations, but even an elegant 15 foot tall Christmas tree couldn't cheer me up. I just wanted my bag.

We found the room we had been assigned to and were told upon entering that Santa had just visited. Tears again filled my eyes as I saw a Hello Kitty bracelet kit sitting on the bed. It had a sticky note with Raya's name on it. She squealed with delight when she saw it and wanted to open it right away and make bracelets for herself and her sisters. That was the first of many moments where I knew that God had not forgotten us. Sure, there was a huge stack of the same bracelet kit on the cart outside our room, and every other girl on our floor was probably getting that same gift, and yes, Hello Kitty is a safe bet for any girl her age, but that didn't matter to me. I walked into that room feeling low. Seeing that someone had left a Hello Kitty bracelet kit to brighten the day one of the world's biggest Hello Kitty fans instantly made me feel loved. I knew that it was a small message from heaven, telling me that He was still watching over us and to just be patient. 

I had a small meltdown to the nurse and tearfully explained what had happened with my backpack. While I told her the story, we got Raya changed into her "hospital jammies" and took her first set of vitals, and then got her all settled into her bed. She watched a movie while the nurse and I went over her medical history and all of the important information they needed to know, and then the nurse told me she would see about arranging for me to use one of the hospital's breast pumps and would talk to the social worker about what else they could do for me. The staff was kind and sympathetic, and I again felt as though I was being sent a message that everything was going to work out fine; that we would be taken care of whether I got my bag back or not. This was meant to be a learning experience for me, and I needed to do what we had come there to do, and to be patient.

The minutes ticked by slowly as I waited for the hour to arrive that I had been instructed to call the bus ticket booth and ask about my bag. As I went over everything in my head, I tried to resign myself to the idea that I probably would not be getting my things back. It would be expensive to replace everything, but it wasn't the end of the world. I actually felt proud of myself for taking it so well. The nurse had reassured me that they would make sure we had enough formula to travel home with. There was a store nearby where I could replace my toiletry items and a Goodwill where I could get a cheap bag to travel back home with. Losing the bag was a mistake that anyone could have easily made, and I really tried to be okay with the situation as I came up with a "plan B" in my head.

It was only about an hour after we checked in, but finally, the clock reached the time when the driver was due to be back at the bus stop. I called the number I had been given, and to my great relief, the woman on the other end of the line told me that they had a bag in the ticket booth that matched the description of mine. I may have actually jumped for joy. I was about to hang up when the thought popped into my head that I should ask her to look inside the pocket to verify that the bag really was mine before I got back on the subway and went all the way back to the train station. I really didn't think the odds of there being ANOTHER lost black Jansport rolling backpack were too high, but before I could reason with myself, the words were coming out of my mouth. I said, "Could you do me one favor? Before I leave my daughter alone at the hospital to go all the way back there, could you just check to see if my black glasses case from Target is in the front pocket of the bag?" While I waited for her response, I wondered what had possessed me to ask her to look for my glasses. Why not ask her to look and see if there was a quart sized bag of hotel-sized shampoo and 2 packets of Chick-Fil-A sauce in the front pocket? Surely there weren't many people traveling with Chick-Fil-A sauce in their carry-on luggage. She quickly replied that my glasses case was there, and said that the bag would be waiting for me. I grabbed some change for the subway and my wallet, gave Raya strict orders to sit on her bed and watch Frozen and not move a muscle until I got back, and stopped by the nurses' station to let them know where I was going.

The train ride back to the bus stop was much more pleasant than my earlier rides had been. I chatted with a nice lady who was heading home from an appointment at the hospital with her daughter. It helped pass the time and I appreciated having a kind face to talk to amongst the train full of strangers. When the train reached the station, I walked as fast as I could to the bus stop. I have never been so happy to see a backpack in all of my life! I thanked the woman profusely, and asked her to please tell the bus driver how deeply grateful I was to him for getting my bag back to me. Feeling like the weight of the world had been lifted off of me, I took my bag and headed back to the hospital. I stepped out of the elevator on the 6th floor with a spring in my step and thought, "Okay, NOW I'm ready to do this." 

The first thing I did when I got back to her room was explain to Raya that Heavenly Father had been listening to our prayers and to her beautiful song that she sang on the train, and that He had helped us get our bag back. She smiled, giggled a little, and hugged me the way that she does when she's happy but doesn't know what to say. I told her that we needed to say another prayer to thank Heavenly Father for answering our prayers and for helping us get our bag, and so we did just that.

The blessings continued to pour out on us like the rain that had soaked us that morning. For the first time in her entire 5 years and dozens of IVs, her IV was started in one poke. Her anxiety level was lower than I've ever seen it during a hospital stay and her spirits were high. They let us use her home medications that we had brought with us so that she didn't have to use the comparable substitutes on their formulary. We had an incredible view from our room, and we had a wonderful nurse. With our little backpack ordeal behind us, my head was clear and I could focus on the medical testing that had brought us there to begin with.

Later that evening after Raya had fallen asleep for the night, I decided to take out my contact lenses and put my glasses on. I opened the front pocket of the backpack, pulled out my glasses case and opened it, and then my heart sank. The $40 I had stashed there on a whim while I was packing had been stolen. I tried to stifle the feelings of disappointment and betrayal that were welling up inside of
me. I found myself once again praying. This time, my prayer was that God would bless whoever had felt that they needed that $40 badly enough to steal it from me. At the end of the day, I was so grateful to have my bag back, with or without the money. I prayed that I would be able to just let it go, and I made the decision to do exactly that. I had my things back, nothing irreplaceable had been lost, we had made it to where we needed to be, and the $40 did not matter. 

It's interesting how challenges that we face in life are not always about us. I knew that although it was MY bag that got left on the sidewalk, MY prayers for its safe return that had been answered, and I had gotten all of MY things back, there was very little about the situation that was about ME. Yes, there were lessons learned and I was tested. There was the momentary internal conflict over whether I should even bother trying to get the bag back or not, and how I would react to finding that the money had been stolen. And whether or not I could be gentle on myself for making the mistake of forgetting the bag. I think that behind the scenes while the bag was not in my possession, the temptation of money in my bag was also a test for someone else. But really, even though the whole experience was emotionally trying for me, it was not about me. There was a greater purpose in all of it. The real reason for the outcome of the situation was to show a little 5 year old girl that no matter where she is or what she's doing, God can see her. He is mindful of her wherever she goes and whatever she does, and hears her when she prays. He cares about her just as He cares about each of His children.

The prayers of our family and friends on our behalf during our trip were felt, and were deeply appreciated. I have no doubt that we were watched over while we were away, and I will never forget the emotions I felt throughout our little experience. Above all, I hope that Raya will be able to remember the day that she said a prayer with Mommy in the subway and sang a song to Jesus, and He heard and answered her sweet, humble request. I know it's something I will never forget.

Thursday, January 15, 2015

New adventures in bolus feeding

It's been almost a month since we went to California for motility testing. I gave myself week or so to process everything and enjoy Christmas before getting down to the business of making changes. And to wait out the rash she got from eating cross-contaminated French fries at the hospital:

Change. It can be such a yucky word. Yes, change can be a good thing, but ugh. Nevertheless, change is what the doctor ordered so change is what we're doing. Very slowly and carefully. We've seen time and time again over the years that this girl's body does not like change and tends to react unpredictably to it, so we're careful. However, since she was healthy and seemed to be back on an upswing with interest in eating by mouth, we decided it was time to go for it.

When the motility doctor came in to talk to me about the results of the testing and her only suggestion was to try and get Raya back on bolus feeds, it took everything in me to hold back my tears until she left the room. I had been trying for probably a year to get off of slow continuous feeds to no avail. I imagine how I felt is similar to how it might feel to be floating along in the ocean, clinging to a piece of driftwood and then have a boat come by, but rather than pluck you out of the water and rescue you, they tell you, "You know, you really ought to keep swimming towards that shoreline. We're not sure how far away it is but just keep swimming and you'll probably get there."

Now don't get me wrong, she was wonderful and she didn't leave me hanging, there just isn't any medical intervention she or any other doctor can take to give us a boost in helping Raya. She did give me a plan for making progress towards bolus feeds though, so that's what we're following. Without rehashing all the details of Raya's visceral hyperalgesia diagnosis, our goal is to teach her stomach to stretch without causing pain or making her nauseated to the point of vomiting. I know it makes me sound like a total cynic but from where we're sitting, which is 15-17 hours a day on continuous feeds with no significant change in almost a year, that feels like a lofty goal. Like when a 5 year old says he wants to grow up to be a famous rockstar. It's not that it won't ever happen, but when you hear it, you just smile and nod and pat the kid on the head. That's how I feel about getting her back on bolus feeds. I know we will get there, but it's hard to see the end from the beginning.

The plan is to start with one bolus feed a day during her "best stomach time" and to start with giving her 2 hours' worth of formula in 30-40 minutes. That sounded do-able to me. We started the Saturday after Christmas and this is what it looked like:
I gave her the morning doses of her meds and then waited the standard amount of time that we wait to allow them to kick in. Then we got out her Candy Land game, 180ml of formula (6 oz), water to flush with, a towel, and a puke bucket (just in case). I calculated it all out so I knew exactly how much formula we needed to do in 5 minute and 10 minute increments and we started. It went great for the first 3 ounces. She was happy, chattering, playing the game, and just her usual self. The second I started to push past 3 ounces, there was a visible change in how she felt. (see photo above) When we hit 4 ounces, she threw up. { #bolusfeedfail } It was sad. We took a little break and then finished the last 2 ounces a bit slower than we'd been going before. She felt yucky for a while and then was okay and we started her pump and ran the rest of her formula at her normal continuous rate.

The rest of Christmas break, we worked on finding a rhythm with the bolus feeds and I worked on getting the formula in at a comfortable rate. Easier said than done. By the time the kids were ready to go back to school, she was doing much better with tolerating them as long as I didn't go any faster than 40 minutes. At 35, she refluxes (sometimes into her mouth & then coughs & sputters on it) and at 30, she pukes. She likes to help push the formula, which is hard to let her do because she doesn't understand how to do it slowly.
We're still trying to decide what method works best for her. We definitely can't do gravity bolus (pouring formula into an open syringe and letting it flow in by gravity). She doesn't do well with that and it's too hard to do it slowly enough. We do pretty well pushing it by syringe but the drawback with that is that syringes with rubber plungers suck. They don't last very long at all. I may have to bite the bullet and purchase some silicone O ring syringes out of pocket because they work MUCH better and last a lot longer, and none of the DME companies provide them. We've had better luck with one brand of rubber plunger syringes but of course it's the brand that we don't have very many of. It also gets tricky trying to get a formula bolus in by syringe before school in the morning. The 3rd option is to use the pump. That works pretty well but has its drawbacks too. First, it means we have to reprogram the pump multiple times a day, which leaves us with the risk that it could get programmed incorrectly and either feed her too much too fast, or not enough. Second, she needs breaks every so often during the bolus feed and when we do it with the pump, that means we end up extending it out longer than the 40 minutes and that doesn't do her any favors with what our goal for bolus feeds is. Still working on that part.

I've been having Raya eat something by mouth while she's getting her bolus feed. The act of chewing & swallowing food triggers certain physiological events that prepare the body to start the digestion process. Think about how your mouth starts watering when you smell food. Smells and the first tastes of food trigger the release of hormones & chemicals that signal digestive tract to start moving & get ready for food. Having her eat, even just a few nibbles of something, helps her to tolerate the bolus feed a little bit better. (or at least that's the theory)
I usually can't get her to eat more than a few nibbles of whatever food she chooses. Most of the time it's banana. She also likes to color or play with toys while she gets fed.

We HAVE made progress in the past 2 weeks though, and she will now touch the banana with her fingers instead of needing to use a fork.

That brings me to the down side of our new bolus feeding adventure. Since starting the bolus feeds, we have seen some dramatic changes in sensory processing and subsequently in behavior. The number of times that I've said "Raya, calm down please" in the last month is in the hundreds. She is back to needing to squeeze and hug things but doesn't want to be touched, just like when she was a baby. She is bouncing off the walls from the moment she wakes up until the sleep medicine kicks in at night. Her attention span is notably shorter and she argues about EVERYTHING. She has been really emotional. Like, mood swingy, PMS-y emotional. She has no middle ground. She's either really high or really low but nothing in between, both emotionally and physically. But she's not vomiting. {as if that's the only important thing to consider...}

The good news is that she is getting a little more sleep now that her continuous feed is ending earlier. We have known for a very long time that overnight feeding impacts the quality of her sleep, but there's really nothing we can do about it when she's not tolerating a feed rate that allows her to not be fed while she's sleeping. When we do a bolus feed of 2 hours' worth of formula in 40 minutes, it buys her an extra 1 hour and 20 minutes off the pump, which means I'm usually only up once in the middle of the night and usually only for half an hour instead of only getting to sleep in 2 hour increments. She has had more nights where she either sleeps through the night or only wakes up for a few minutes and then goes back to sleep rather than waking up and being awake for 2 or 3 hours in the middle of the night.

The jury is still out on whether this change is a good one. So far, the change in her sensory issues doesn't seem to be having too much of an impact on her at school other than being really clingy to her teacher and hugging the other kids whenever she gets the urge to hug someone. It's really a good thing she's only at school during her best time of the day and only 3 days a week. If she was in kindergarten right now, it would most definitely be having an impact on her at school. It has definitely impacted other areas of her (our) life though. Everybody is feeling the strain and bless their hearts, they are all trying really hard to be patient with her. Making decisions about whether or not a change in her feeding schedule worked for her was a lot easier when vomit was her main indicator of a problem. I'm not totally convinced that this plan is in her best interest, but we will keep going for a while and see where it takes us. I'm still waiting on the final report from the motility specialist and we have a GI appointment coming up at the end of the month, so I'm sure there will be plenty to talk about.

Wednesday, January 7, 2015

ENFit Safe Enteral Connections Transition: Don't panic!

(Note: This is a cross-post, written on behalf of the Feeding Tube Awareness Foundation.)

In case you have not heard yet, change is coming to enteral feeding (aka tube feeding). It is a HUGE deal, and although I am no expert on the subject, we (Feeding Tube Awareness Foundation) have been in close communication with the Global Enteral Device Supplier Association (GEDSA), which is the organization responsible for facilitating the changes. We are doing our best to educate ourselves and stay apprised of what is coming in 2015-2016 and share that information with others. I do not claim to know everything, but I do want to share some of what I have learned in hopes of helping other people to not panic. Because let's face it, other people making changes to the way we feed our tube fed children = cause for panic. But don't panic, everything will be okay!

First, let's go over why the changes are being made. One only need glance through this article about horrifying real-life examples of medical devices being connected to the wrong tubing in order to understand why change to medical connections is a good thing. The examples given in that article are incredibly disturbing. While it is hard to believe that medical professionals with any level of competency could make some of those mistakes, others are not so difficult to believe and illustrate the need for incompatibility between devices that are not meant to be connected to each other, such as IV tubing and feeding pumps, or trachs and feeding pumps. (and the one about the NG tube being connected to the Foley catheter is just gross.) Bottom line: enteral devices need to be compatible ONLY with enteral devices to avoid harmful and potentially fatal misconnections.

Beginning in Q1 2015, a transition to the new ENFit connections will begin to roll out in phases. It will be a slow process, which will help keep things running smoothly. There have already been many changes made to the timeline, which I feel is an indicator that the process is being done carefully so that the transition will be a smooth one.

(*Note: I am using the terminology used by GEDSA at

The first phase of the transition will include the administration sets changing from the current Christmas tree plugs to the new ENFit connectors. These are some of the current connections that we are all familiar with:
L: Kangaroo Joey administration set with MIC-KEY single port extension
R: MOOG EnteraLite Infinity administration set with AMT Y port extension

In place of the purple and red administration set connectors in the above picture will be the new ENFit administration connector. This is a generic example of what the new ENFit administration connector will look like:

In the first phase of the transition, administration sets (i.e. feeding pump bag plugs) will be changed to the new ENFit connector, like the above picture, and will include an adapter. The adapter will twist onto the ENFit administration set and will be a temporary feature that will only be included until the final phase of the transition. At that time, the adapters won't be necessary anymore.
This is a generic example of what the first phase (new ENFit pump bag plug + adapter) will look like:

Many people have expressed concern that the transition will make their current supplies unusable and we want to reassure everyone that this is not the case. The adapter piece will make it possible to use new ENFit administration sets with any extension sets you already have on hand. Here's what that will look like:
(wow, I need some lotion)
Here is how it would look connected to a Corpak NG tube:

Having said all that, these adapters will only be a temporary item. During the transition period, each administration set will come with an adapter. Once the final phase of the transition is complete, adapters will not be issued along with the administration sets anymore. {Reading between the lines, if you have a stockpile of the current extension tubes and are concerned that you won't use all of them before the final transition takes place, it wouldn't be a bad idea to save a few of the adapters so that your supplies don't go to waste.} If you do have a large stockpile, it's time to start moving through it, whether that means using the supplies yourself or sharing them with other people through non-profits and supply exchanges.

In the next phase of the transition, new ENFit syringes will be introduced. During the transition phase, syringes will also have adapters so that they can continue to be used with the current feeding tube connectors. I don't have any samples of ENFit syringes so there are no pictures, but they will come in a variety of sizes just like the syringes that are currently available. Be aware that once the transition is complete, cath tip, oral/slip tip, and Luer tip syringes will NOT be compatible with the new ENFit connections so you will not be able to use them. (believe me, I have tried and they don't fit)

The final phase of the transition will be when the feeding tube connectors change to ENFit connectors. At that point, the temporary adapters will be discontinued. This is a generic example of what the ENFit feeding tube connectors will look like:

This is what the inside of it looks like:

And here are both ends of the new ENFit connections side by side, with the feeding tube end on the left and the administration set end on the right:

The two pieces twist snugly together, and this is what they look like when they are connected:

Our friends at Nestle' were kind enough to show us some prototypes of their new ENFit feeding tubes. The top one is an NG tube and the bottom one is a PEG-type G tube:
Over the years, we have had problems with things like NG tube ports stretching and caps not staying closed, med ports popping open overnight and feeding the bed, leaking from extension tubes without caps, feed sets disconnecting from extensions or NG tubes during feeds, and syringes popping out of extension tubes during bolus feeds. No product is perfect and I imagine that over time, those of us who use these products daily will find their flaws, but overall I think the new connections are going to eliminate a lot of the common problems we currently have with feeding tube connections.

GEDSA has been very receptive throughout the process to concerns and questions from consumers. One of those concerns is whether or not the use of blenderized diet will still be possible due to the sizes of the openings in the new connectors. You can see here that the inner diameter of the new connection is the same size as the inner diameter of both the Infinity and the Joey connectors:
GEDSA's website does say that the use of an adapter with a syringe during the transition phase could result in a slightly smaller hole, but that as long as the hole in the extension tube is the smallest hole, the flow of formula should not be impacted. Keep in mind that the size of the hole in the actual feeding tube (G, GJ, J, and NG) will not change, nor will the size of the connector that connects the extension tube to the button for low-profile tubes, so if it works now, it will still work with the new connectors. The same goes for venting with the new ENFit syringes. The principle will still be the same: pull the plunger out of the syringe, connect to an extension tube, connect the extension tube to the button, and vent. The only difference will be the way the extension tube and syringe fit together.

These are the recommendations from GEDSA:
1. Learn about the products that are changing
2. Understand the transition to the new connectors
3. Have the right products on hand
     -Use up existing products and do not buy more than you need
     -Transition as soon as possible
     -Use the products only as directed
(Source: Transition Checklist for Patients and Caregivers)

The current timeline for the transition is this:
Q1 2015: ENFit administration sets with adapter available
Q2 2015: ENFit syringes available
Q3 2015: ENFit feeding tubes available
Q1 2016: Transition to ENFit connectors will be complete

This timeline could change, but this is what we should be expecting to see. Now is the time to start talking to your supplier about the changes, take inventory of the supplies you have on hand, and think about letting some of them go if you have a large stockpile.

Yes, there will be changes. Yes, there will be some adjustment required of all of us, and yes, there will probably be some aches and pains associated as we all adapt to our new supplies. However, the transition process has been planned carefully and we all need to try to embrace these changes and be optimistic! DON'T PANIC! Remember that the final objective is to make all of these products safer by eliminating the possibility of accidental misconnections that could seriously injure or kill our loved ones who depend on medical devices.

For more information:
GEDSA's website has a wealth of information about the ENFit connections transition process. Here is a list of helpful links and resources that I strongly recommend looking at, starting with this video:

GEDSA's Stay Connected website:
Timeline for ENFit Transition:
Patient/caregiver checklist:
FAQs about ENFit:
FAQs for Blenderized Diet:
Article on Blenderized Diet and ENFit:
Feeding Tube Awareness Foundation on facebook:

Monday, January 5, 2015

Another beautiful Christmas

Christmas this year was blissful. Having gone out of town a week before, I did not get everything done that I wanted to before Christmas. There was so much to do and so little time to do it in, but I did the things that were the most important and just let the rest go, and sometimes that's all you can do and that's okay. We decided to keep things simple and quiet this year, and that's exactly how it turned out.

We came home from LA in the wee hours of the morning on Friday, the 19th. We were up bright and early to make it just in time for the annual Jingle Jog at school. We've been going since our 6th grader was in kindergarten and it's always a fun thing for the kids. They dance to silly songs, take a lap around the soccer fields, and then go inside for lunch in the cafeteria that the students have decorated for the holidays. Since we had both still been asleep when the big kids left for school, it was the first time we had seen them since Monday night and there were happy reunions between Raya and her big kids!
*sniff sniff* Last Jingle Jog with my big 6th grader! *sniff sniff*

Friday evening, the big girls had their first piano recital. They've been working really hard on their recital pieces and both had them memorized and did a great job!

And this child doesn't seem to understand lately that not everything is about her. She insisted on having her picture taken at the piano too.

After the recital, we had a Christmas party to go to so the kiddos stayed home and we went out by ourselves. This is what it looks like when a kid takes our picture:

 The Sunday before Christmas, we got everyone dressed up in their Christmas clothes and did the annual family picture in front of the tree. But first, this girl had to get her picture taken by herself.
This is as good as it gets with a tripod and remote!

My baby is growing up way too fast. :( She is such a sweetheart!

We spent Christmas Eve with family about an hour away. We always look forward to our Christmas Eve get-together! This was my 13th Christmas in Arizona, and it turned out to be the year that my tastebuds decided that tamales are tasty. I have tried one every year and had not found one that I liked yet. The ones my in-laws bought this year were out of this world and I wish we had more of them!
Cousin love!

Decorating "safe" cookies for Santa

We were a little short on boys for the Nativity so Raya got to be Joseph. With a sparkly headband.

She is such a ham!!

Sometimes you take 10 pictures and this is as good as it gets.

Joseph, Mary, and Baby Jesus

The whole cast

Family picture with Grandma & Grandpa (oh, Raya...)

The annual picture in front of the tree before bed with the plate of cookies for Santa. 

Christmas morning was fabulous. The kids were all excited and grateful, and watching them made us happy. It doesn't get much better than that.

Baby's first Christmas!

Fruit snacks for breakfast

All I really wanted for Christmas was for this little stinker to snuggle with me

Santa brought Raya a new bike with training wheels. It was a tad too big for her.

She went right over into a bush the first time she tried to go around the corner. Oops. We adjusted her training wheels and she's done great with it ever since.

December was incredibly stressful for me for many reasons. I did the best I could to focus on the spirit of Christmas but it was still hard to feel the peace & joy that I wanted to feel. All of the anticipation and stress started to subside when we left for the Christmas Eve get-together. I think the best gift I received was finally being able to relax and enjoy the time with my family. We had such a nice Christmas break and I truly enjoyed having the kids home with me for 2 weeks. (I can't always say that...)
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