Happy Twelfth Birthday Princess Ellie!

Ellie turned 12 yesterday. I can hardly believe it. And as a nice birthday gift for mama she transformed again in a way that may seem small but was really telling for us. Each year whenever she gets presents she tends to shun them. We joke and say that all new toys start off as the devil. We have had to slowly introduce them to her by doing things like playing with them ourselves, or leaving them sort of near by in view and every now and then insinuating that they might be lonely.

Even toys she has come to love and are essential to her, started this way.

But yesterday this pattern changed. She got a KiddiJamz DJ toy - which Dave found. It's really such an Ellie gift because we noticed how she plays her favorite videos on fast forward then going back, etc. in her own pattern.  We also call her "DJ Ellie" because she likes to mix the songs on her toys to fill the house with a music all her own.

So the KiddiJamz is, on paper, a perfect Ellie gift. However, after years of the initial rejection, I have developed low expectations for her acceptance of new gifts; wisely trying not to get too excited about a certain gift for her. But this year she changed.  She took to this toy the minute it was opened.

This is a picture of her playing with her newly unwrapped toy.  She would play with it for a few minutes and then push it away and stare at it. Then she would ask for it again. She did this several times.  You can see how delighted Dave is.

Today she didn't want to stop playing with it to go to sleep and she had already mastered how to record, mix the different genres, record her other toys into her mixes by holding the microphone to them. She has recorded several songs on the little "iPod-like" devise that comes with it! She's incredible and determined and focused. Ha! So this also tells me that, when she refuses to focus on her homework it's not because she can't focus, it's because she doesn't want to.  Bring it on Ellie!

I can't believe she is twelve. Time these days seems to be going by too fast. Ellie has been the healthiest she ever has and has a full life with school and after school activities like soccer and iPad class (yes, there is such thing) and homework. She is spending more time playing on her own and expanding what she can do. We are all changing and Ellie most of all.

Happy Birthday Princess Ellie!
Love, Mama

For the beautiful Anastasia: Questions and Answers

Ellie at Advance with Doran and Dada

Yesterday a father wrote to me with a lot of questions about his beautiful baby girl Anastasia.  Rather than respond in private, since many of his questions are things we also asked in those early days, I thought I would answer most of them here. 

Dear J.,

Thank you for your lovely letter. I am very glad that some small bit of the content here has helped. I remember those early days, and Ellie looked a bit like your Stacey. It's a lot of wondering and worrying about what the future will be. Who will my sweet, beautiful baby become? I also realized at that time, when Ellie was Anastasia's age that, because babies are supposed to be total care, this was the most "normal" our life might ever be: the days when I and Ellie could still pass as just another baby with her mama. (There's some psychology for you. ;-)

I also worried, and I have written about this here, that Ellie would transform into someone I could not relate to or connect with. The good news is, that on the eve of her twelfth birthday, that is very far from the case. She is still my beautiful, funny, smart Warrior Princess. She is still making progress; still evolving.  But I didn't know that would be the case way back when the doctors used to talk about stalled development, as if the brain ever stops creating neurons in response to the environment. We never believed that Ellie would hit a ceiling, though the doctors would say that and we saw other parents who believed that and then made is so by not stimulating their kids beyond that "ceiling."  This is a path I do not recommend. 

Ellie signing Hi!

The brain above all else, is a dynamic system all its own. It's always evolving. And it takes feedback from the body and external environment to build itself. There is evidence of this in spades in neuroscience studies. The simplest example is of new neurons that developed (as shown in the scans) when a person learns to juggle. 

The implication of this for the child with CP, is that if the brain can't make the body do something it's supposed to, because the connection is cut off due to brain injury, it might be possible to wire it up from the outside. Make the body give the brain feedback by motoring the child's limbs, etc. through the motions. We did this on many levels on it worked in getting Ellie to eat and drink. Because of her prematurity and lack of oxygen at birth she arrived with no suck reflex that typical babies have. Then she had a Grade 3 IVH brain bleed on Day 2 of Life that impacted her nervous system leaving her upper body hypotonic or floppy and her lower body hypertonic or spastic. The hypotonia in her trunk and head, face and neck meant it was hard for her to move her face. She had a mouth full of cotton and weak sphincters. She could not feel all that much, nor control her tongue. So we did facial exercises in her mouth and on her face that we learned in the NICU from the amazing Jean Dolaway. We worked with a feeding specialist to learn more techniques and exercises beyond the NICU. That was time and money well spent. We did them for many years. She was able to learn to eat and drink after over 10,000 hours of working with her on this. We are currently still working with her on drinking. In her case, the input from the outside allowed her brain to build new capacity that was supposed to be a reflex coming into life but was taken out by her rough start. Our stance was to never quit trying to stimulate her - to bring the world to her because she could not go to it. We still do this and it has helped her immeasurably. 

If there is one thing you do, do that. Bring the world to beautiful Stacey.

We brought the world to Ellie by doing these things: 
1. We talked to her all the time - in a very animated way that resulted in her first sounds and now her very prominent vocalizations
2. We printed out big letters on paper and taught her the alphabet
3. Read to her constantly and exposed her to math as a 2 year old.
4. We did infant massage that helped a lot. 
5. We did lots, and lots of Tummy time! 
6. We did all the PT and OT exercises we learned in early intervention outside of those sessions. 
7. We let Ellie play on a big foam ABC mat at home so that she had to move and roll to get to her toys. This built strength.
8. We did a ton of foot soaks with espson salts so the magnesium would sooth her stiff ankles and feet (we still do those).

Ok so now onto your questions:
What are the three therapies that helped Ellie the most?
That's easy:
1. The neuro-respiratory therapy we did with Linda Scotson at Advance. She now calls it The Scotson Technique. But we did it with Ellie 6 days a week, 4 hours per day for several years, traveling to England to Advance twice a year to learn more. That helped Ellie tremendously with her breathing and eating and being in her body. Linda also counseled me and gave me the strength to fight the medical diet that Ellie was on that was making her sick. See my posts on nutrition. Ellie has severe reflux. I was able to help her be minimally symptomatic by changing her to an alkaline diet of whole foods. We researched this for a long time before we went. And I finally called Linda and had a long chat with her and then made the investment. I encourage you to research everything using the web and asking around as much as you can. There are no easy answers to the questions CP and TBI's pose to our kids. If you call Advance they will talk to you free of charge. I would call them and ask all your questions to them to (that makes two!)

2. The nutritional based healing I did with her by putting her on real, whole foods I make myself that were high in alkaline and low acid. 

3. The hyperbaric oxygen treatments (with the protocol Linda Scotson developed). We did a lot of this since Ellie was 13 months. They helped tremendously. We saw her make gains from them in terms of being more alert and aware and along with the TST she got healthier. Additionally, many of the parents we met doing the same thing, who had kids who had lots of seizures said they saw a decrease in the number of seizures.  So we are believers in (with the right protocol - Linda's is akin to what divers do and is very specific) Hyperbaric.

4. Tummy time.  Tummy time could be number 1. We read Linda's book called Doran, it really shows how being on one's tummy wires up the brain to the body and in Ellie's case this helped a lot. It helped her get stronger all over. We do tummy time every day even now.

Was it worth it traveling to England for TST?
YES, and yes again. If I had to do it all over, I would have done it as soon as Ellie was able to board a plane and I would have done even more of it. The combination of the TST, hyperbaric, and nutritional healing helped Ellie when all the meds in the world were making her sicker and sicker. I would do it all again and am grateful to Linda and the staff there for the work they did with Ellie and us. 

What else do children do at Advance?
Lots of tummy time to deliver the gentle touches that build up the child's respiratory system that allows more oxygen to get to the brain. They will also do hyperbaric. Linda gave me a ton of counseling on Ellie's nutrition that made all the difference for Ellie and for me to fight to get Ellie off the medical diet of synthetic foods the doctors were saying she needed. If you look under the tab "nutrition" you can see in depth what I did. But any child with reflux who also has CP (in fact everyone) will hugely benefit from a low acid, high alkaline diet of whole foods versus the synthetic, acidic stuff the doctors push on their patients. We learned that acid builds up in everyone's cells - this is normal. The way a typical person gets rid of that acid is by movement. Because it was hard for Ellie to move, she had more acid to deal with in general. And this also negatively impacted her reflux.

Is TST useful to a child who does not have respiratory issues?
Yes. Ellie wasn't a chronic lung kid because she was a big 27-weeker. But, because of her prematurity and her brain injury, her body was not developing normally. The TST increased her circulation and oxygen saturation that helped Ellie's whole body and brain. 

How old should a child be to start?
ASAP. You can't start her too soon. The earlier the better in fact. A child's brain is like a super brain, developing and growing like mad. What a great time to influence that by ensuring the body is wired up to it. The TST helps people with brain injuries like Ellie because those gentle influences on the nervous system communicate to the brain and the whole system gets back in sync if that makes any sense. 

I wish we had done it as soon as Ellie was able to travel. It wasn't cheap in that we were coming from the US and our work was impacted by having to take care of Ellie. So we went into debt to do it - but it was worth it. I don't regret it one bit. And, when Ellie was small it was much easier trip than it would be today. Though I want to take her back to Linda for an evaluation. So we might do that at some point. 

What do we do psychologically?
This question of yours is the most heart breaking. I don't think there is any easy answer. Dave and I were devastated of course. But the great thing was that both he and I knew that we loved Ellie and we could feel her presence - our connection to her. We focused on that and decided to believe in her and look for ways to help her heal from her injuries. 

In that sense, healing did not mean believing all the doctors said - in fact the opposite. If we believed them we wouldn't have done 90% of the things we have because they said she would be a vegetable. Which clearly turned out to be wrong. Also, they will tell you Stacey needs this and that surgery, this and that intervention. Be very wary of this. It's true, Stacey may need certain interventions. But the thing to be wary of is two fold. 

First, there is this thing called the "management model." Under this philosophy (also a Greek word ;-) interventions, surgeries are done to help the caregiver not for the healing of the patient. 

Second, medical knowledge is always evolving and doctors don't know everything. So ask the same question of three different people when you are trying to make your decisions. You will be surprised to have three different answers. Also, use your gut and common sense and do your research (like you are by reaching out to me). We were told for example that when Ellie needed a g-tube she would also need a Nisson Fundoplication (where they tie a bit of the stomach around the opening sphincter of the stomach so that the patient can't vomit). We refused based on two things: research that showed the fundo made it very hard to swallow and eat by mouth, and the fact that vomitting is the body's way of getting rid of things that are toxic to it. It didn't make sense. Note: some kids do well with the fundo and need it. But Ellie is hypotonic and reflux decreases if a child can eat by mouth because digestion starts in the mouth. We did not want to take that away from her. We made this choice in light of the doctors threatening us by saying that Ellie was sure to get esophageal cancer. During another, truly needed surgery, we had Ellie scoped and turns out her esophagus is perfect. So the doctors were wrong. 

As you can see, the way Dave and I dealt with all of this was to just dive in and work hard to save Ellie's life and make her life good and cherished and safe and thoughtful and hopeful. This sustained us through years of long nights being up with a vomitting refluxy baby who never slept. It sustains us through all the bad things. We just keep trying to do whatever we can to move her forward. Though I think I could do a lot more these days  - like Feldenkrais. I want to do this with Ellie. I will let you know, here if we do and how it goes.

Another hugely helpful, sustaining thing was being in touch with other parents. The cohort of parents we met in the long months Ellie was in the NICU taught us so very much. The same is true of the amazing parents we met at Ellie's first school. So if you can find others in a similar situation that can help protect your sanity. (So I am glad you reached out to me!)

Ellie playing her guitar this week!

I am not sure that is a great answer to your question. But to be clear, I cried a lot too. I grieved a lot too for many years but especially early on. I grieve still for the loss of that healthy child that Ellie might have been if not for her traumatic brain injury and prematurity. When my grief comes I honor it but try not to live there for long. The cool thing is that whenever I get overwhelmed by worry or grief (and I still do at times, but not as much as in her first 7 years) I go and hang out with Ellie. She makes me be in the present moment. And in the moment all I experience is this cutie pie of a girl, who I love more than life, who is inquisitive, loving and wants to dance! She is my normal and my heart. 

Your Anastasia reminds me of Ellie in terms of the shape of her head. ;-) But she is wide and clear eyed. When Dave and I saw her we both said, oh she's going to do great. Not that we know this for sure. But she looks really good and she's a cutie pie. ;-)

I am sorry whatever happened to her did. I am sorry this is happening to you and her mother. I am glad you reached out and I hope this is helpful. 

Please, write any time.

Love and hugs, 
Kathryn 

Pharrell's "Happy" in ASL by Deaf Film Camp at CM7

Life at 11. Purposeful speech and other news.

Paper Jamz Guitar

Ellie is firmly into the pre-teen zone of consciousness. She introduces us to popular music on You Tube she finds all on her own. She thinks Katie Perry's Roar is pretty great (I agree) and she loves Capital Cities song Safe and Sound. Kissing You by Miranda Cosgrove is also a huge hit.  She still loves to dance with her Fijits and all her toys blaring all over the house. She calls this a Jam Session and she means it. She particularly loves this Paper Jamz guitar as well. All these toys offer a big return for her big effort in motor planning to play with them.  She is so patient with herself and determined when she is manipulating images on the iPad for example. Sometimes it takes her 10 or more tries to get what she wants but she patiently keeps trying employing a laser like focus in her attempts. It's impressive. I need to cultivate that type of patience in myself about my own efforts to learn about and traverse the world.

Ellie at 11 and a half.

She is also still (knock on wood) G-tube free.

I have to pause whenever I think about it because it has been such a huge life change. We can go in ponds now….! Ponds! We live right next to one so that is significant. Though, it's July 6 and we have yet to take her. We are still in our old way of life in our minds in many ways.  I think we are a bit shell shocked. You get into a certain mode of living and stick to that pattern.  It might just be a bit of fatigue too BUT my goal is to take her to our local neighborhood pond this year and just try it. The beach there may not have an accessible path down to the water like the one we saw in Provincetown so that is an obstacle but still - it's worth a look, right?  I need to take a leaf out of Ellie's book and keep trying things until we find the right solution.

She loves swimming and we hardly ever take her. I am put to shame by my friend's who take their quadriplegic daughter a few times per week. We have to get a stander up and running too.  Always so many things to get up an running and it's overwhelming most of the time with both Dave and I working full time.

Provincetown Beach Accessible Path

Ellie is all legs and arms these days as you can see in this picture. Growing, growing, growing, bones winning the race against muscles and ligaments. Which means Botox and casting and other interventions to ensure she doesn't end up a pretzel. Spinal orthosis (body jacket) and ankle, foot orthotics (AFO) are the measure of the day. Her network chiropractic appointments have kept her spinal curvature at bay and have also loosened up her ankles. Ellie has increasingly higher tone the lower you go down on her body and her poor feet and ankles are hit the hardest. I can't say enough good things about how Dr. Jennifer Lees has helped us. I wrote, here, about the initial scare with a huge curve in Ellie's spine that has since resolved. I still take Ellie once a week to Dr. Lees and it's worth every cent and every bit of time it takes to do so.  Thank God for non invasive help!

Ellie also loves her new school. They are rigorous in terms of schedule and academics and making the environment as much like a regular public school as possible. Seeing how much support they give their teachers I am pained for Ellie's old school and what they could achieve if they considered modernizing their approach.  I'm grateful that I switched her though, every day. This year along with having regular science class, language arts and math every day, Ellie also got exposed to industrial arts (shop) and cooking class and a very robust after school program where Ellie got to meet some of the older kids in an iPad class (her favorite), a game playing class (checkers, etc.), and a movement and music class.  They also have a very competitive but inclusive softball program on their AstroTurf pitch. The pitch is one of the only ones in the country at a special needs elementary school….(What's up with that country?!)

Ellie on the AstroTurf pitch with her trophy.

This summer for the first time I am taking her to day camp….there actually is one that provides a one to one aid and can manage Ellie's total care needs. We will see how that goes but I am hoping it offers another way for us to bring the world to Ellie.

The most exciting thing that happened over the last few days is that Ellie started interjecting (with her voice output device) into the conversation - with sentences that were spot on in terms of being part of the conversation.  For example, Dave and I have started watching movies with Ellie on her iPad before bed. We use the iPad because it's a small enough screen so that Ellie can watch the movie without fatiguing her eyes.  It's also a big enough screen such that all the beauty of the movies are not lost.

Ellie as Bat Girl for Halloween

We were trying to figure out how to use Amazon's Instant Video and upload it, etc. on the iPad. During the first attempt, Ellie who was watching intently interjected, "That's not working."  and she was right!  She did it again when we were discussing plans for the day using another short but totally appropriate sentence to join in.  And she did it so fast too in terms of her picking the right options on her Dynavox Maestro - so fast.  It makes me think that she could communicate a whole lot more if she was interested.  Her new school is all about use of technology and it shows but I also think her brain is growing and evolving and she is coming out
of her shell a little more. Her being able to interject into our conversations in a more sophisticated way gives me hope of her being able to, eventually, communicate with people that don't know her well.

Don't get me wrong, Ellie has always been able to make herself heard with us. BUT really only in things revolving around her care, her needs and in a very truncated fashion. For example the tilt of her head to indicate that she wanted to be pushed in that direction. So she does and has always communicated. But for her to say, "That's not working" and be right and right in there with what is going on is very validating in terms of our belief in her intelligence.

Life is going by pretty fast these days. I understand now why when I was a kid I preferred other kids or the grandparent set. The middle of life when you are supporting a family, a home and a career often feels like an unending ride on a fast roller coaster.  It's a lot. Blogging about it is a way to press pause and reflect on the things that matter and make all that hard work worthwhile.
Hope you are having a great summer!

Cha, Cha, Change! or Goodbye Feeding Tube!

Ellie having a lavender foot soak on her Winter Break

This last 6 months has been a time of intense change for us all and for the better. On October 22nd of 2013 Ellie got her g-tube OUT (for good if I can be so bold to say that)! AND on November 4th she started at a new school.

When Ellie was born our wonderful neonatologist Dynio said that Ellie will present her needs. That concept stuck with me.

Me and Ellie playing her Paper Jamz guitars

Ellie's g-tube was always a nightmare of leakage, skin breakdown, and intense management. It progressively started popping out more and more. I tried it all, taking it out for a little time (actually over night) to see if the track would shrink a bit. Taking her to the doctor to see if they could surgically make it less leaky. We are lucky to have a dear friend who is a wound care nurse par excellence so we have been able to manage her dressing at home and avoid the initial yeast and fungal infections that occurred when we were still in California (another benefit of having moved to Boston). But it was coming out more and more and we were changing our elaborate and expensive dressing on it several times a day. They had to do this in school too. And it was constantly leaking.

 In February (this time last year) it was popping out once a day and Ellie's physical revealed low vitamin D levels. I upped her vitamin D and other nutrients and in April got an appointment to see a GI doc to see if there was another type of G-tube that would work better. It had started popping out twice a day. And for those of you who have not lived that - it's awful. Ellie is in pain because stomach acid burns the exposed skin around the tube which was like an open wound all the time. And she loses whatever meal she just ate and you have to transfer her, lay her down, and clean and redress the site, insert a new g-tube (into her stomach) and get her washed and dressed in new clothes. The whole thing can take a good 30 - 40 minutes as you try to distract Ellie who wants to scratch her stoma area because acid on skin hurts and itches. Super fun. So when we went in April we saw a nurse first. She asked me to show her the site. I got Ellie onto the table and asked the nurse for some towels. She was surprised by this. But she got them. Me and the nurse I brought with me then proceeded. I cut off the dressing and my nurse positioned the towels to stanch the deluge of stomach fluids that would ensue after I took out the Mic-Key Button so the nurse could see the site.

When the GI nurse saw Ellie's stoma she shrieked (not exaggerating here), "OH MY GOD! OH MY GOD! It's a hole! It's an open wound! OH MY GOD!" I started to explain how hard we have worked to keep Ellie's skin clean and well cared for and that the tube leaked from the beginning and that we have had to limit Ellie's PT and body Jacket and every thing to protect the site. She kept saying Oh MY God! At which point I started to cry feeling very bad. She then said, "You guys have been going to heroic measures to care for this! The skin around her site is remarkable and perfect! But her site is a hole, there is no track." I said that I had thought so but that Ellie's old GI Dr. had not mentioned that during the last exam. She calmed down once I started crying and I calmed down too. The doctor came in at this point and we decided to try a different tube and see them once a week to follow it. Long story short we tried the tube and it worked a little better but not much.

 The whole incident with the nurse losing it was actually a wake up call for me.

We had been going to heroic measures. Me and Dave and Ellie's teachers and the carers we have helping us in the home. Our quality of life was very negatively impacted, Ellie's most of all by this. Ellie had been doing great taking sips of liquid from her amazing speech therapist Katie. AND she had been eating all her purees for several years now. I realized that maybe she was presenting something new to us. Presenting that it was time to get rid of this awful, painful wound.

I presented this idea to the head of GI at the hospital and he said that if we close up this site and then put another feeding tube in a different spot, there was no guarantee that her skin would not do the same thing. He later retracted that because I think for a doctor it's a huge risk to encourage a parent to get rid of their kid's feeding tube when they have a history like Ellie's.

However, Ellie was doing well with her drinking and a nutritionist had told me there were kids with no feeding tube who did not drink and were OK. Note this was not my goal - I want Ellie to drink. I knew that all the time we had spent changing her dressing and managing her site would now be spent on working with her to drink.

Nosey Cup

But isn't that time better spent? We spent over 12,000 hours getting her to be able to eat and her glowing skin, hair, and growth rate, alertness, and lack of colds (and normal elimination) is a testament to the goodness of having done that. Also, there are cups everywhere that you could make into a nosey cup by tearing or cutting it. There aren't g-tubes and Allyven pads, and Hy-tape everywhere or people who could even handle dealing with Ellie's site. My goal as her mother who loves her is that she be as independent as possible by the time I leave this world and that includes not being dependent on expensive medical supplies (if at all possible). Note, I am not knocking those supplies or the tube - they saved her life. BUT if there is a choice point that involves more work for me but provides an ultimate benefit for Ellie, I am going to go for it.

In the several months before the surgery we worked and worked on getting Ellie to drink. We all (school personnel and Dave and I and our home carers) used spoons and the nosey cups. We had enough experience with feeding Ellie that we knew what to do. It was an adjustment for all of us. Giving someone liquid in a cup is difficult enough. Now factor in someone who moves her head from side to side and has a slight oral aversion. We started by thickening apple juice with apple sauce. But because apples are so hard on the teeth I now give her other things to drink. One is her cantaloupe and coconut water juice I make her myself.

Ellie's Hydrating Cantaloupe Water Recipe:

1. 1 cantaloupe
2. 1 100 ml or more of coconut water
3. 1 pinch sea salt
4. 1 tablespoon of agave

Direction: Take 1 whole cantaloupe seeds and skin removed and blend it with one big carton of coconut water along with a pinch of sea salt and a tablespoon of agave (optional).

Ellie loves this and it's very hydrating and cantaloupe is easy on the teeth. I also give her my green juice too which she loves! I make Kris Carr's Make Juice Not War juice (Google it). The other thing is that Ellie eats purees all day - not dry crackers or cereals or dry anything. There is liquid in her meals. I do worry about her getting "free water" but for now she is hydrated. Though the doctors would have liked to see Ellie drinking 1,000 ml's of liquid a day, we did the operation when she was at about 300 cc's per day. Which is pretty good as we started at 0. A critical factor was that she would eat her meds that we mixed into her purees.

Ellie on New Year's Day 2014

On October 22 we had the operation. The surgeon told us we would be in only overnight but because he realized Ellie's shunt cables drain into her abdomen and because her site was so bad (the stomach lining was growing outward..!) he did some extra things to ensure closure and that her stomach contents would not leak into her abdomen compromising her shunt. We were in from Tuesday to Friday with Ellie on morphine and in a great deal of pain the whole time. Not fun. Poor Ellie. I remembered it was rough for her to get a tube and for my little girl, equally rough getting rid of one (which is so NOT the norm - typically they close on their own). I am not sure what her karma is in this life, but she has some extraordinarily challenges. Full recovery took about 2.5 months.

Today she is eating slightly less than she did with the tube (but not losing fluids and whole meals either).  She is drinking about 400-500 per day, and hydrated and moving her bowels much, much better, and her vitamin counts are all excellent. She was losing so many nutrients and calories every day right out of her tummy. Now she is keeping it all in. She still has reflux, but it's much better too. The green juice is still a huge factor in her being less acidic but she also isn't taking air in through her belly anymore. We were also able to get a body jacket (spinal orthosis) that actually works because we don't need a big hole in it to accommodate her G-tube.

Most of all, Ellie's quality of life is much, much better! She is in far, far less pain. She is able to concentrate much better without the constant itching and pain of the tube. For her 11th birthday she got her tummy back. Can you imagine how distracting having a feeding tube that hurts all the time was for her? I think about when I get a cut in my finger and how it can be slightly distracting when it's fresh. A leaky, painful feeding tube would be magnitudes worse. Every time I see her smooth yet scarred belly I have to kiss it. She had to be really brave to drink because liquid is really fast and scary to deal with if you are hypotonic and have dysphagia. Ellie works as hard as we work with her and the results have been worth it.