Myffy Preschool Update

Shortly after that last post I got a call from The Montessori school to say that they had a spot for Myffy at last. I was expecting them to say it was a spot for Fall Enrollment, but amazingly they said she could start that next Monday! So she did. Unfortunately Lu woke up at 2:30am that morning, which is not unusual in itself. I always call the hour between 2:30 and 3:30 the witching hour because Lu almost always wakes up then, but if she doesn't, then we're usually good on through to a normal morning hour. The unusual thing about this morning was that she never, ever went back to sleep. I took Lu into the other bedroom in the hopes that at least Myffy could get a little more sleep before her first day of school, but it made a rough morning for all of us. I dropped Myffy off at 8:30am with her hat, coat, change of clothes, sunscreen, lunch box, indoor shoes, outdoor shoes, hand sanitizer, tissues, snacks and all the other things they ask you to bring on the first day of preschool. She was kind of interested as we hung her coat, hat and lunch box on the peg under her name, but then the moment she realized I was leaving her there, this new incredible, earth-rending wail that she has developed lately burst from her and the screaming fit began.

The door closed, but the sound followed me all the way down the hall and through two sets of doors, faded away as I walked around the building, but then met me again through an open window as I got into my car and drove away. I glanced in my mirror. Both car seats were empty. I was alone in my car without any kids. It felt really strange. Like my heart involuntarily jumped a little at the sight even though I know neither kid should be there right then. I headed home to where Lu was doing her ABA therapy and would need me to do her tube feeding in a couple of hours. I spent the next 40 minutes doing all kinds of things I keep meaning to do around the apartment but never seem to find time to do, until the phone rang. It was Myffy's school. I could hear Myffy screaming in the background, just as she had been when I left her. She hadn't stopped. They suggested I come get her. Poor baby. Crying like that for a whole hour without stopping. When I got there she was still crying. And she was exhausted. When she saw me her face lit up, she lunged out of the teachers arms and started yelling "Momma! Momma!" I took her into my arms. She quieted down. The crying reduced to sniffing while I talked to her teacher about the best way to ease her into all this. Then Myffy pointed and said "Culla (aka color), culla" referring to the easels where some of the kids were painting. At least she noticed that there were fun things to do in the classroom.

On Wednesday I cancelled my dentist appointment and cleared the whole morning so I could stay at school with Myffy. She started crying as I took off her coat this time and clung to me when we went into the classroom, but I sat down with her, let her sit in my lap, and cuddled her until she calmed down. After awhile Myffy got comfortable with me there and started venturing out a little. Just a few steps at first, then she turned back and launched herself into my lap with a "Momma" and a smile. Then a few steps more. Then she went to check out the birds. And then the fish. And then the instruments. And then the painting area. After two hours I got up to leave. She got upset again, but it was time to go outside right about then and the teacher told me afterwards that she really liked the rabbits and the garden. She cried a little more when she went back inside, but she cried herself to sleep so they put her down for a nap. They didn't call me until she woke up at 1pm.

The next several days we decided to have her stay form 8:30-10:30 each day and each day it got a little bit better. The hard thing about waiting for them to call and tell me whether or not I need to pick her up is that I either have to pick her up before 10:30 or wait until after Lu's tube feed and I've dropped her off for her afternoon preschool class all the way across town and drive all the way back which makes it around 1:30 before I can come back for Myffy. We're fitting in both of their ABA, Speech and OT therapies around these 3 day a week preschool classes. Today was Myffy's 3rd Monday in a row, and today she stayed at school from 8:30-2:30 with a nice big long nap in the middle. She started crying when I got her out of the car, and tried to hold on when I left her there, but when I arrived to pick her up, she wasn't crying or upset at all. She was standing on a step stool helping the teacher wash the dishes from snack time. The teacher sudsed them up, and handed them to Myffy, and Myffy held them under the tap to rinse all the soap off. She didn't even see me come in. I got to stand there and watch her for a few minutes before she turned. When she saw me she smiled, put her dish down carefully, stepped down off of the stool and ran to me for a great big hug. Go Myffy Go!

Autism Awareness Month!

April already! Mid April at that. The past couple of months have gone by so fast I've hardly had time to catch my breath much less blog about it all. But April is Autism Awareness Month so I want to get at least one blog done in April.

A quick recap of what's been going on lately:

Spring Break (March 13-20th) was awesome. We spent it in Phoenix going to sessions at SARRC (Southwest Autism Research and Resource Center) Mon-Fri from 9-3 each day. The evenings were spent as much as possible by the pool. Once again we stayed at Lu's favorite hotel with the lovely big water village where we can order food and drinks right at the pool. Nana and Granddad Anderson arrived from England that Wed and stayed in AZ through the end of the month. It was great to see them and for them to get a chance to reconnect with Lu and really get to know Myffy. The last time they were here was the week Myffy was born, so Myffy had most of her life to catch them up on. It was great fun.

Going to SARRC always makes me wish that we had a place like this to take our girls in Flagstaff. The facility, the playgrounds, the preschool, the therapists, the staff, the kids, everything is awesome and I want to stay there all the time. We brought Myffy in to work with our therapist Alex as well as Lu now that Myffy has officially been categorized as "At Risk for Autism" by the Arizona Early Intervention Program. The type of Applied Behavior Analysis used at SARRC is called Pivotal Response Teaching or PRT and has been a great method to pair with the Discrete Trial Teaching program that both girls are doing in Flagstaff. PRT is child led and can be done anywhere at anytime and does not require props or data sheets in the moment.

Basically, you watch your child to see what is motivating them moment by moment- for instance does Lu seem like she wants to get out of the door. Once you identify the motivator, take control of it- put your hand on the door handle, then set up the language opportunity- "Open door?" and then be contingent on her saying "Open door" before opening it. There is more to it than just that, task variation, using models, questions and time delays to try to illicit spontaneous initiations by the child, but that is the very basic jist of it. The interesting thing is that Myffy responded to this method so well. She really took to it and loves it. And her vocab has been shooting up thanks to this week of training. Which is fantastic! Thanks Alex and SARRC!!!

After Spring Break was over it was back to Flagstaff and back to normal therapy and school for Lu. We have lost yet another tutor lately, so that always makes things difficult. Luckily we are training some great new people right now and I think overall the program is getting better and stronger with time. There just always seem to be these little setbacks. But Lu is doing well at school. She is responding more to the speech therapist and her teacher though she still responds most to her aide. And she is taking more of an interest in the other students. She has even on occasion decided to start hugging the other kids in class. All of the adults respond to this by going ahhhhhhh, that's so cute! Which makes both her and the other kids do it more. We're super happy to have her reaching out to the other kids and wanting to interact with them. But the hugging did start to get a little out of hand in terms of disrupting class (you can't have kids hugging for 20 minutes out of 2 and a half hours) so we've decided to limit it to one hug per kid. That's a socially appropriate parameter. Plenty of people hug their friend to say hello. But to keep hugging, that could get a bit awkward. And not all kids like to be hugged.

I'm still trying to find a preschool placement for Myffy. Haven Montessori is our number one choice, but the wait list there is just so long. We've been trying to get Myffy in since last summer and there is no spot for her in sight. I'm hoping to hear this month that they will have room for her next fall. Fingers crossed. She really needs to have some time with her peers for peer modeling and social development. And I think she would totally love preschool. She always gets so mad when we drop Lu off and she doesn't get to stay too.

April 1st was the Northern Arizona Autism Conference. Stew and I attended. Stew spoke on a parent panel. I managed to see a few talks and go to a few workshops which were all great! I had to miss a bit to go back and forth to the apartment in order to nurse Myffy and do Lu's tube feedings. But it was definitely worth while. Our friend Laura Nagle, who was the President of the NAZ Autism Society of America last year gave a couple of fantastic talks and there was a showing of the trailer of the documentary movie that is being made about her. The film is still in the process of being made but you can see the same trailer on her website here: http://www.lauranagle.net/Film.htm  They actually are still raising funds to finish the project and could really use any support you might be able to give.

And not to bombard you with donation requests or anything, but I have also just set up a fundraising page for Team Tallulah! our own team this year to raise money for Walk Now for Autism Speaks. This is the organization that raises money for research into the causes and potential cures for autism as well as work on finding new and better diagnostic tools to diagnose earlier and better treatments to help individuals and families reach better lifetime outcomes. It's a worthwhile cause even though it will probably not impact our girls directly. Hopefully they will find answers for the generations to come. If you would like to join Team Tallulah and walk with us, please go to www.walknowforautismspeaks.org/arizona/teamtallulah and click on the join us link. If you cannot join us in person but would like to show your support with a donation, please go to www.walknowforautismspeaks.org/arizona/jenturrell and make a donation. Any amount you can afford would be greatly appreciated.

Thank you all for reading and caring.

Lu's Progress and IEP Battles

 Lu has been doing great. Her feedings are going well. She is visibly gaining weight (thank goodness). She sometimes even eats some popcorn or bacon by mouth while tube feeding. Her disposition seems to get happier and more affectionate day by day. The site of the G tube itself is still causing a few problems. It still seems to be painful when the tube is attached and detached so she resists until it is either in or out and then pretty happily hangs out during the feed. A few days ago the skin around the tube looked very odd on one side. By the next day that bit of skin had swelled into a strange shiny red swelling that almost looked like stomach tissue was coming out through the hole. I completely freaked out. Luckily one of Lu's tutors is a nurse and was able to tell me that this is called Granulation Tissue and that it is not uncommon as a wound like this heals. Apparently it is not dangerous in itself, but because of its location it was causing her button to no longer lie flat, allowing stomach contents, including acid, to seep out onto her skin, which meant that it had to be removed immediately. Poor Lu. One more trip to a hospital, one more minor procedure. We waited a couple of hours to get in, but burning it off with Silver Nitrate took all of 50 seconds or so. It looked strange for a day or two, the burned skin sloughed off, and now it looks pretty normal again. If you consider having an open hole in your stomach normal.

 So with all of this progress on the feeding and recovery front, we decided it was time to try to take Lu back to school. Especially since her ABA trained one-on-one aide was scheduled to leave Feb 28th and we needed to get a new person in place. Our preference would have been to get one of the home-based tutors into the classroom with Lu because they all have a good and long behavioral history with Lu and they are all well trained and well aware of the new medical issues. I would also feel so much safer leaving her with them than with a new stranger who she is not used to. But none of the tutors had Mon, Tues and Wed afternoons free. We thought about one of the tutors doing Mon and Wed and me doing Tues, but both the teacher and Dr. G didn't think this was the best idea. It took us ages to get her used to me dropping her off every day. Me staying every other day could really confuse her. Then the school said they had someone they wanted to hire. I was impatient to get someone in place so they could shadow the current aide and get trained by Dr. G who very awesomely agreed to fly out almost immediately to do the training. The school assured me this new person was really great, had experience, was great with kids and they would send her resume. I had some misgivings, mainly about a completely new person knowing how to safely handle Lu's flop on the floor tantrums without injuring the new button. And about toileting since she still isn't independent in the bathroom. Potty training has been really tough (especially with all of her GI issues) and throwing a stranger in there could be a big problem. And I was worried about a new person being able to get Lu to comply with doing meaningful and worthwhile work in the classroom.

I'm not disparaging Lu's teacher with this last comment. I think her teacher is a good one, but at the moment Lu is still not able to learn in a group environment, so her aide is really her teacher in the classroom. She translates and modifies what the teacher is teaching the other kids into something that Lu can benefit from at her current developmental skill level (which although improving, is still far below that of the other children in the class). The aide also pulls Lu from the group after she has spent a certain amount of time in the circle or after she has completed her task because she doesn't get much from waiting while all of the other kids do their tasks. Instead she does discrete trials that Dr. G writes for her at a table in the back, and the aide has to run these trials, provide reinforcement consistent with her home program and take accurate data. These trials are where she actually gains most of the skills that the other kids are able to learn from just hearing a few times in a group setting, and hopefully this will help her to some day catch up with her peers. The aide also does social skills building exercises with Lu by recruiting another student to run protocols that teach Lu to ask another child for a toy she wants, and give another child a toy when asked and to play appropriately with toys with other children. This is something that she cannot get from her home-based program because there are no other kids her age to learn from at home. So the aide position is super important for Lu's education. Without an aide she might as well not be at school.

So after discussing the aide position problem with Stew and Dr. G at length I confessed my misgivings and that nagging feeling that something was wrong and this just wasn't going to work with the person the school wanted to hire. We all agreed that if I wasn't comfortable, then we wouldn't do it. One of the other tutors from the home based program offered her Tuesday afternoon (I hadn't thought to ask any of them for just a Tuesday afternoon, but when I said I was going to go every Tuesday she said she could instead) and we made a plan to have two home-based tutors replace the one school aide. Hooray!

So we had a plan, we wrote to the head of special education and our IEP team to let them know the new plan and were told that unfortunately their candidate had already been hired. Because of hiring policies at the school district, a job posts, is open for a minimum period of time, candidates apply for it, and once it is filled the posting closes and that person has to be allowed a 90 day probationary period during which they cannot be dismissed without grounds. Obviously we had no grounds since she had not yet even started. However Lu's IEP does state that she must have an ABA trained aide. To make a long story short, we spent the past week with Kris training two new tutors for Lu's home-based program and trying to train the new aide provided by the school, but in the end it just didn't really work out. No one warned the potential aide that she was expected to do training and tutor hours outside of school hours and we did not feel confident that she would be able to handle all the complexities of Lu's program without those additional hours.

So finally, after meetings and phone calls and more meetings and emails it was decided that our two tutors who we wanted to be hired will attend with Tallulah as volunteers until we can get their paperwork processed for hiring, and in the meantime the other aide will also attend school since Lu has to have a hired aide. And once the paperwork all goes through, it will just be our tutors as her aides.

I got the feeling several times as we went through all of this that some of the people involved were a bit baffled about us kicking up such a fuss about who her aide is and how well trained they are for the last three months of a preschool class, but the thing they don't understand is that right now Lu is in a developmental window of opportunity that will pass and will never be open to us again. Numerous peer reviewed and reproducible studies have shown that the lifetime trajectory for kids who are able to attain real functional speech before the age 5 is vastly different than for kids who don't. The kids who talk by 5, those end up being the ones who are often called 'recover' and who are able to go to school and learn and have many more options for their future lives. So every day, every hour right now counts. And that is why we have pushed in all our chips on this ABA program, on finding the right aides for her, on trying to give her every tool possible to help her gain skills and make progress. That's why we are fighting so hard for our baby.

Settling In

It has been just over 2 weeks now since Lu got her tube installed and started on the Elecare amino acid diet. We've had a few hiccups and it's been a steep learning curve but for the most part, it's all becoming routine now. Mixing up the food, cleaning the equipment, administering the food, cleaning up the equipment, cleaning the stoma around the button, putting gauze on and taking it off. Because we feed her every four hours and each feed takes an hour we really have to plan in time for each feed and the cleaning around it into all of our activities each day.

So far we've been trying to have Lu lie down for the feeds because the wound has not yet healed and it seems painful for her when we mess with it. Lying down is the easiest way to get to it, get the food in and get it out again without the tube getting yanked on or caught up in anything. Hopefully we will eventually get to the point where she will know to be careful of the tube and the IV pole and can sit up at the table to feed, or have the pump going while she does therapy, or sits in her car seat in the car. But for now, we keep her quiet and still. Which means she has been watching lots and lots of movies.

She has actually watched so many movies now that she seems tired of watching movies; something I never thought I would see. We try other things too, flashcards, reading books, but movies usually seem to hold her attention the longest.

It has also now been over a week since we moved into our new apartment. We haven't really moved out of the ranch or anything. Stew still has to be out there most of the time. But after a year of driving the girls in and out and in and out of town, staying over at my mom's and renting a small office space for therapy (where the other tenants complained about the noise of kids doing therapy because they are trying to conduct business next door) we decided that it really was necessary for us to get our own place in town. The two hour round trip drive in the car to get to and from town each day was such wasted time in all of our lives, but especially for the girls. It was two hours of the day when they could space out into autism land and we want to give them as little of that kind of time as possible. Plus it is so much easier for them to receive services for speech, OT and ABA therapies without needing the therapists to drive all the way out to see us some of the time. Just paying for everyone's time to get out to see us was getting to be too much.

So here we are now, settling into our new place and our new routine. Unfortunately a few other new things have come up at the same time, like Lu losing her very familiar and well trained one-on-one classroom aide as of the end of February. I won't pretend I'm not alarmed by this. The thought of sending her into school with this new button in her belly while it is still sore and unhealed with a stranger to look after her is causing me a lot of distress. For the last two days I went with her and stayed with her at school because I just couldn't bear to leave her after all she's been through lately. I was worried it was too soon to send her back. We're scrambling to find someone new, get her trained and in place as soon as possible. I just wish there wasn't so much new stuff for Lu to take in all at once. Any one of these things- surgery, new button in her belly, tube feeding instead of food, moving into town, or a new aide on it's own would be enough to throw most autistic kids off their game, but all of it coming together in less than a month, whew. Luckily Lu often surprises me with her toughness and resilience. I'm sure we'll work it out and make it through some how.

Lu's super awesome BCBA Dr. G is coming back next week to train the new aide and some new ABA tutors for her. Thank goodness. I always feel like things are getting out of control with Lu's program just before Dr. G comes back, then she's here for a week, whips everything back into shape, and by the time she leaves I feel like I can handle things again. That sure happened on her last trip here when she started working with Myffy. I've been feeling much better about things with Myffy lately. And much more stressed about things with Lu again.

But one of the most amazing thing through all of this has been watching Lu respond to having nutrients in her body. So many crazy things are happening to her and around her and yet her moods have been for the most part great. She's been super sweet and cuddly. She's even hugged Myffy and held her hand on several occasions without being prompted to do so. And I can see her growing again. During the week in the hospital and the week before she had lost a lot of weight. I could feel her spine through her clothes and count her ribs when I dressed her each day. And while I can still feel the spine a little bit, the ribs have a bit of flesh on them and her belly goes slightly out instead of being concave. Her color is great. Her eyes are clear. I've actually managed to take several pictures of her looking right into the camera now which was something that almost never ever happened without spending hours trying and trying to get a picture. I can't wait to really get going on her therapy program again to see if being nourished helps her with that as well. I hope so. I really hope so.

Oh and one last thing, we've had a lot of snow lately! Both girls have been pretty excited by this. Lu particularly loves kicking it with her cute pink cowgirl boots. She will go way out of her way to reach a pile of snow and kick it. She also likes standing under the eaves as they drip ice cold snow melt onto her head. I've been trying to discourage that. And eating the snow. But here's what the snow looks like out the window of the new place. All nice and white and fluffy.

Now time to get some sleep before Lu's IFSP meeting with DDD tomorrow morning. And then we need to start thinking about her IEP meeting with the school board next week. Gotta love all the acronyms in autism land.

Lu and her G Tube

Whoever it was that invented the G Tube deserves a great big smackeroo on the lips from this grateful Mom.  I won’t lie, this past week was terrifying. And each day Lu’s surgery was delayed by her RSV I couldn’t help wondering if this was really one last chance for me to call it all off. Was it really the right thing? Did it really have to be so drastic? I wanted to help her, but here we were about to have someone install a semi-permanent hole in her body, right into her stomach. How much was that going to hurt? How long would it take her to heal? How well would it work? How hard would it be? But the more we talked to all of the wonderful Docs and staff at Phoenix Children’s Hospital, the more we were convinced that this was the right choice for Lu. Things were past the point of us hoping she would come around and start eating. The time for action had come. G Tube time.

Lu was admitted to the ER on Monday and tested positive for RSV. This put her up in the isolation ward (after waiting in the ER for about 10 hours to get a bed) where everyone had to wear masks and full gowns around her all the time (except for us of course because we were already contaminated) which I think freaked her out a little bit. What kid wouldn’t be freaked out by a bunch of masked and yellow gowned grown ups sticking them with needles and putting cuffs on them that suddenly inflated and put pressure on their legs and put little lit up bits of tape that glowed on their fingers and toes periodically? I probably would have been freaked out too.

She was really dehydrated and low on nourishment when we checked in so she submitted to most of the prelims with some protest, but calmed down and cuddled with me in between each round of testing, questioning, and vitals taking. 

I was amazed at the ease with which the staff got her first IV in. It took just a moment to get the needle in then on went the arm supporter and all kinds of tape. Because she tends to try to get IVs out they end up taping it up so much it looks like she has her arm in a cast.

Tuesday was spent in debate, everyone trying to decide whether or not to go forward with her procedures or get her in better shape and discharge her until she got over the RSV. It was a tough call. Her resistance was extra low from being sick, but I was also afraid of being sent home with no reliable way to feed her. In the end it was decided that she would have her upper GI Barium Scope at 10:30am on Wed and that the surgery would be scheduled at 2pm pending the results on the upper GI.

The upper GI was tough. She had to drink a barium drink so they could watch it move through her system and she did not want to drink it and lie still under the imaging machine. After seeing her early resistance the radiologist wanted to cancel it. He thought it was too traumatic for her and suggested rescheduling it, but the whole point of the procedure was to make sure that there were no obstructions prior to the G Tube placement, so I didn’t see the point in doing it later if they really were going to put the G Tube in that night. So we did it. Tallulah spit so much of the barium out in fighting that she and I looked like we’d had a barium bath. But eventually it passed through her system without showing a twisted bowel or other obstruction.

And so on to the G Tube placement. Don’t you just love those release forms they make you sign in the hospital before they take your child away from you? The forms that outline all of the many horrible things that might happen and what they might have to do in the worst case senario?  My throat constricted and I clutched Tallulah to me as they read it out loud hoping she wouldn’t look up and see that I was crying. She didn’t. I signed. We cuddled until the anesthesia injected into her IV tube took hold and then they lifted her and took her away from me.

The surgery took a lot longer than they said it would. They said 30 mins. An hour later I was still waiting. Then another half hour. Worrying something went wrong. Just when I realized I hadn’t eaten in many many hours and got up to go grab something from a vending machine, the surgeon came out to tell me everything was ok. Thank goodness.

She opened her eyes a few times that evening/night, but mostly slept off the anesthesia. When she moaned in pain, they gave her morphine. She didn’t react well to this, slept too deeply, too hard and had some oxygen saturation level problems, which kept her in the hospital one extra day. (There was actually a really scary moment when her skin went grey, her lips went blue, the alarm was sounded and 6 people rushed in to her aid.)  

But finally, on Friday, they taught us how to do her feeds and let us take her to the hotel with us in the evening. Because of the scare we wanted to keep her close to the hospital for one more night before heading back up to Flagstaff.

When we got to the hotel Myffy was so happy to have her sister back. Myffy hadn’t seen Lu since she was admitted. All week long Stew and I had been doing shifts since Myffy wasn’t allowed in the hospital (because of RSV season) and Lu of course wasn’t allowed out. Every morning when Myffy woke up she would look around and say ‘Tu? Tu?’. Little Sweetheart. We were all so happy to have Tallulah back. My Mom drove down to Phoenix to stay with Myffy Thursday evening so that Stew and I could have some time together in the hospital with Lu to learn how to operate the equipment and feed her ourselves. Thanks Mom! That was a great help.

Since getting Lu back to Flagstaff things have mostly gone well. We had a scary setback when she started throwing up the tube fed food for a couple of days.  3 out of 5 feeds coming back up was alarming. This was our absolutely last resort for feeding her. If she couldn’t be tube fed, what could we possibly do? But after talking to the staff at the hospital we made some adjustments: smaller portions fed at a slower rate; and then when Myffy threw up twice in the days following we realized it may have actually been a mild stomach bug. Since then she has been handling her feeds well and even eating a few things by mouth: a pediasure pop here, a few potato chips (only potato, oil and salt on the ingredient list) there, a few pieces of popcorn and some juice. We’re trying to encourage her to still take at least a few things by mouth so that she doesn’t completely dissociate eating from nourishment and feeling full. But the most amazing thing about all of this is being able to feed her, really feed her, for the first time in ages, possibly since weaning. 

And I do feel that there has been a difference already. She's always been a happy girl, even through all of this trauma and trouble, but since getting these feedings she has seemed even happier. More clear eyed. More interested in the world around her. And even though she is in pain from the surgery (healing every day) hopefully the pain of her EE is lessening with each day that passes. 

I wanted to take a moment to say thank you to everyone who has written to express concern, send love, and asked how they can help. We really appreciate every bit of it. Dealing with special needs can sometimes be so isolating that even just an email or voice message, even when we aren’t able to immediately respond, means so much. Thank you for reading. Thank you for caring. Thank you for the outpouring of love and support. We’re all doing so much better for the love being sent. And we return it all, even if we don't have time to say so.  Thank you!

Eating Issues and the Feeding Tube

Well, we didn't really expect this trip to Phoenix Children's Hospital to be a cake walk; taking a child to the hospital is never an easy thing, especially for surgery, but this trip has been particularly hard. And it came at the end of a particularly hard week.

I realize that I have a difficult time describing Lu's eating problems to family and friends. Eating is such a natural part of life for most of us, a life-sustaining and enjoyable part of life that I think it's hard for most people to even imagine what it is like for Lu. We've gotten a lot of well meaning advice to either let her not eat and then come to it when she's good and ready because, after all, no child will really starve themselves to death; or to strap her into a high chair and not let her leave the table until she eats because eventually she will eat, or to actually force the food into her mouth and make her eat, kind of like when you make your dog take pills. Like I said, I know all of this is well meaning, but none of it really works with Lu. And believe me, we've tried a lot of things- read books, watched videos, attended feeing workshops, tried to be strict, tried making food fun, painting with it, cutting it into funny shapes, arranging it differently on the plate, tried to let Lu pick things out and help cook. We have tried a lot. Lu's therapist Dr. G came up with what I think is a pretty good analogy to explain things: 

Imagine being a 2 year old in terms of comprehension and being told that in order to grow you have to press your finger against a piece of hot metal every day. Maybe not hot enough to instantly blister, but hot enough to leave a small red burn every time. At first you might do it because your parents ask you to and it makes them happy, but after awhile the pleasure of making them happy will wane and the pain will overtake the pleasure and you will refuse to burn your finger. So your parents might try to entice, reward, even bribe you to touch the hot metal. And this might work for awhile too, but again, eventually the pain will win out and you will refuse to do it. So then comes threats and punishment, which again may work for awhile, but we are all animals and the adversity of pain will win out over the threats and punishment eventually. Especially if the pain increases over time, as it has with Lu as her EE has progressed. And I have always wondered if Lu actually connects the feeling of hunger with food. I'm pretty sure at this point that she connects food with pain, and it's possible that even if she realizes food relieves hunger pains, but the pain of eating may be greater than the pain of hunger. So this is why I don't think that allowing her to starve herself until she is ready to eat will work. She has been starving herself into the 'Failure to Thrive' category for ages now. Let's face it, the reason hunger strikes work in political situations is because it is really really hard to force someone to eat when they are determined not to. And I'm also not crazy about restraining, coersing and threatening her into eating when pain is involved because of the fact that I want her to trust me and believe me when I do tell her that something will or won't hurt her, is or is not good for her. I also want her to tell me when someone or something hurts her and have her know that I will believe her and take her seriously and do everything I can to fix the situation. I do not take this trust lightly. If I restrain and hurt her myself, meal after meal, day after day, what am I teaching her? That brute force wins? That I can make her do what I want/think is best because I am bigger? Or that her feelings don't matter to me? I don't want to teach her any of those things.

So anyway, these are some of the reasons that once she started refusing all food, and then finally water by mouth, we decided to pursue the feeding tube option. Like I said in the last post, we did not arrive at this option lightly. It took a lot of talk, a lot of time and a lot of tears to get here.

The thing is that once we got her down here to the hospital in Phoenix, we had to wait in the ER for about 10 hours for a bed to open up upstairs. And in the meantime, she tested positive for RSV. RSV, or Bronchialitis is basically just a really bad cold with lots of mucus and a chesty cough to most adults, but to kids, and especially infants, it can be pretty serious. Myffy got RSV when she was 2 and a half months only and it very nearly killed her.  Right now there is an RSV outbreak at Phoenix Children's Hospital. Lu was put into the isolation ward and the G Tube procedure had to be postponed because they don't want to put her under full anesthesia with a respiratory infection. The GI doc and the surgeon are both supposed to see her tonight and make the call whether or not to still try to do the procedure tomorrow, the next day or to discharge her (assuming we can get enough food/fluids in her to sustain her) and reschedule the procedure for later. What a mess.

Here's the skinny

Lu is getting skinnier. Skinnier and skinnier. We spent the past week trying to slowly introduce the new amino acid liquid food options into her diet and Lu responded to this, much as she did to our attempts at a GFCF diet so many months ago; with a hunger strike. She is now refusing pretty much everything but a few pieces of popcorn, a little bacon and some, not all, chocolate things. Normally she drinks one to two pediasures a day to help make up for the gaping holes in her diet. After trying to mix neocate chocolate into the pediasure, she has been flatly refusing both the mixed and pure versions. It is truly alarming. We're trying everything we can think of. We've even jumped to what I thought would be the last resort: steroid treatment. We've been doing the steroid/splenda slurry since Thursday with no noticable change. Each time she managed to spit some part of it out. This morning she fought harder than before, spit some out and then got so upset that she threw the rest up. We don't know what else we can do. We're out of ideas. Out of dietary options.

Which brings us to the new last resort: the emergency installation of a G-tube into Tallulah's stomach. We are not considering this option lightly. Cutting open her smooth, sweet, perfect little belly, oh god, it makes me sick just to think of it. I really did throw up last night as I googled and looked at photos of children with G-tubes installed. But what else can we do? Her normal intake was already below the nutritionist's minimum even before trying the new formula, and this new reduction places her in danger. A G tube could save her. It could allow her to get enough nutrition for the first time in years. It could even allow her to thrive. It's hard to imagine the word 'thrive' being used to describe Tallulah without the usual accompaniment of 'failure to' preceding it. I don't think anything we've had to do with either kid so far has been as hard as this. But here we are. What can we do but hope and move forward. Maybe she'll just need the tube for 6 months. Or maybe a year. Or two. Maybe by then she will be able to understand enough to make the decision to eat the foods she needs to eat to treat her EE. Or she can learn to use the inhaler for the steroids. It's not forever. It can be removed. But for now, it can save her life. We're leaving for Phoenix tonight and will try to get her checked in to the Phoenix Children's Hospital for feeding, rehydration, and to discuss the tube further with her doctor. She might even be able to have the surgery tomorrow. Then we get trained on how to use the pump and feeding equipment and how to care for the hole in her tummy. And then I guess we go home and start this new stage of life. My greatest hope is that with proper nutrition she will finally start to feel healthy. And that could make such a difference for everything. Without the pain she's been living with all this time, perhaps she will be able to focus better, learn more faster, take more interest in life, in other children, in the world. This could really make such a change for the best. I have to cling to that thought as we go forward. Here we go baby girl.