Many beautiful things all about Ellie – an update

Ever since I found Clare’s blog about thinking of three beautiful things, I have been inspired to do that each day. Clare is way better at actually sharing those things with the world and hence the popularity of her website. But since so many things have built up from this daily practice I wanted to give all the people who love Ellie an update – a bit over due I know.

Seizure Update
She is tired because we upped her dose of Depakane but still very active. It usually takes a week or more for her body to address. We will get her levels tested next Wednesday and if it’s high call her doctor and discuss lowering the dose. We met with Ellie’s neurologist last Wednesday and she was really pleased to see Ellie doing so well. I asked her about getting oxygen in the home in case Ellie had another seizure and she said that would only be necessary if Ellie had a prolonged seizure. I asked what “prolonged” meant and she said one hour with the child turning blue. Honestly, I think I would die first if that ever happened. Ellie certainly was pale but not blue and her 10 minute seizure was the most excruciating 10 minutes I have experienced since her birth. Of course the nagging question in the back of my mind regarding all that is - so you have to wait until someone, my child, is actually having an anoxic event to give oxygen? Something. Does. Not. Compute. Just the same, Ellie has been seizure free since our incident on New Year’s Eve and that is a beautiful thing.

Gross Motor Skills
Ellie is rolling all the time now to get things. She was doing this before the seizures started to mess with her last May and then stopped. But now she is a powerhouse again and we are having to move stuff and take the child proofing to a new level. She is also spending some time in her stander which you can see here. She doesn’t complain though the thing is hard to get her in to and I worry every minute she is in it what it is doing to her spine. I worry so much about that, that I don’t put her in it. Dave does once in awhile and I think that is enough. I have been doing as much tummy time as possible to compensate for the stress on her spine. The great thing is that she is fighting me less on the tummy time – which I have to say she readily does for everyone else. But when it comes to me it’s Mama’s lap only please. I guess I should enjoy that while it lasts ;-)

The Scotson Technique (TST) Therapy: reality check
I thought when we got back from England that I would be doing 3 hours of therapy with Ellie per day. But after really understanding the exercises it will work out to 2 hours per day. This is a relief, especially since she will be starting school. Currently we are on our third week of doing them as we took time off because she had the pneumonia. I am doing them with her one hour a day and on Monday will be ramping up to two hours per day. I wanted to start slow and at first Ellie was a bit pale. I am breaking them up into half hour segments. I am finding innovative ways to be able to do them without needing someone else to spot my wiggle girl who does not prefer to stay still before 8pm. One way is to put a soft pillow over my legs and let her lay over the pillow on her tummy. This way she can’t fall over and I can do the exercises on her. That said, 6 mornings per week, Dave and I get up with her and do exercises for 30 minutes. In truth, I really love our mornings. Ellie is happy because she has Mama’s and Dada’s full attention and we all start our day together connected and focused on helping Ellie’s brain heal. Throw in a little Pete’s Arabian Mocha Java and I can even temporarily negate debt I just paid to the GSTTN – ha!

Nutrition and Diet
We met with Ellie’s GI doc and he was thrilled because she gained 11 kilos in 3 months time. I have detailed her diet and my approach to nutrition here and here and here and here. I have been experimenting with adding a little more variety into her diet. I tried making dark meat turkey soup and could smell the acid on Ellie’s breath right away after a couple of days of this. I tried her on avocado and again she was acidic. When I say acidic, I mean that her voice gets hoarse and I can actually smell acid on her breath – like when you have indigestion. I will try to give her a little avocado from time to time but only in teaspoon portion sizes. There are so many GREAT nutrients in avocado – but it is an incredibly rich food as well, which is hard on Ellie’s system.

The whey protein we bought while at Advance is still proving to be easy for her to digest and I wonder if it is what is behind the increased rolling and energy. I also am giving her two cooked egg yolks 2-3 times per week and that does not seem to be causing her any trouble either. I am too chicken at the moment to try the whites…

I tried her on banana allured by it’s naturally high potassium and other nutrients. Ellie communicated to me before I gave it to her that she did not want it – even in her g-tube. See how she is developing?! I gave it to her anyway, being the horrible, nasty mother I am, and she did not do well digesting it. I really believe the body has an innate intelligence about what is good for it. I know a few people who do muscle testing to tap into this innate intelligence. But how do you do that on a child with hypotonia? And, as any mother knows, it’s hard to get a straight answer out of a 4 year old, especially my Ellie who tries daily to convince me her nanny lives at the North Pole. Sigh. But in this case, it was her body’s innate intelligence telling her, no banana please – too rich. I should have listened.

In my unending quest to get live enzymes into her (she whose sensory issues make her gag on hard foods and who is currently refusing all food by mouth) I am going to try organic grapes. Tomorrow I am going to blend up 3-4 in water and give her those (And yes, I will probably peel them – go-ahead roll your eyes. Mine are rolling as I write this.) She continues to get the fresh carrot; beat; ginger juice cut with a lot of water and that is going down fine- plenty of great enzymes there but a bit of a PITA (pain in the ass) to deal with the juicer every day. (If you juicing fresh vegetables you need to drink the juice right away as enzymes die with each minute that ticks by after the juicing process. This is why I don’t juice up a bunch of veggies and pop them in the fridge and hope for the same benefits for those of you who might have thought of this as a solution.)

Interestingly, the Nanny Goat formula we have been giving her has started to make her sneeze and get a little runny nose every time I give it to her. I think this is a sign of lactose intolerance but I am wondering why it just suddenly came on. Solving this mystery will involve learning something new about the body, which is always good. If anyone has any insights about this – do share them and thanks in advance.

In sum, Ellie’s blood results came back (CBC) showing that she is not vitamin deficient and she is gaining weight and growing at a good pace. I am happy to see her energy levels rising slowly despite the increased seizure med.

Eating by Mouth
She is still refusing to eat for me full stop, though she can and will just a little for her beloved Bonnie. The beautiful thing is that Dr. Soul (how cool a name is that?) when I told her this noted that Ellie was asserting her independence. This was a great realization for me and is exactly what Ellie should be doing at this age. I basically stopped sizing Ellie up against where child development specialists say she “should be” because it just doesn’t apply and got to be a bit painful. I find it more useful to understand her for where she is at and work from there only comparing to where she was. But still, it’s nice every now and then when I discover she is on target or even ahead in some small way. I’m not sure a parent of a typically developing child can truly understand how such a small thing as this revelation delivered to me via Dr. Soul is such a ray of hope and will keep me going for a long while. But there it is, Ellie asserting her independence. Hurray!

School Update: best for last
We heard back from the school (I mentioned here) and that I wrote an essay for and spent hours on the phone with and sent stacks of paperwork to and finally visited…. Drum roll please…..

They ACCEPTED her! For those of you who actually heard screaming 2 Fridays ago round 6ish, yes, that was me after I received this incredible news. We met with them the Tuesday before and it was obvious to us that they totally get it. The teachers and therapists we met were clearly there because they are passionate about the kids. They communicated with Ellie in such a way that gave Ellie time to process and respond – without us telling them what she needed. Ellie even reached out to touch one of the other kids. The school was clean and bright and calm. We were there for 3 hours and left with no concern other than hoping they would accept her. I am measuring my high hopes with a dose of wait and see. She is to start in March and a lot of details have to be worked out with our school district, which is why I was hesitant to report his great news. But now that a little time has passed and all is still a go – time to share our good news. It’s always excellent to have something good happen for someone you love especially when she has been through so much. In fact, it’s a beautiful thing.

Morning has broken...

Ellie's fever finally broke last night and with it her appetite returned. She is still coughing a lot, but not every waking moment, and is still tired and snotty but definitely on the mend. She is playing more and in good spirits. The antibiotics seem to be working which is good because I hate giving her antibiotics, especially before it was established that her pneumonia was bacterial or viral.

Here are the others things I have been giving her to help her fight the pneumonia and heal:

1. Essential Oils of eucalyptus and lavender and frankincense in her humidifier. The eucalyptus helps to open her airways and lungs. Lavender because it is especially anti viral and helps her relax, and frankincense because that is what my gut told me to give her. We had been using frankincense (one drop to 3 drops olive oil) on her feet because it brings oxygen to the brain as it is a turpenoid (not sure I have spelled that right). I am not sure if it is helping here, but my inner voice kept telling me to put it in her humidifier last night so I did. If you don’t know what an inner voice is, first of all I am so sorry for you, second of all, don’t worry because your are probably hearing it all the time, especially when you are about to do something you should not. So just listen up and you will find yours quite useful.

A word on essential oils:

My friend Pey, who is an excellent aroma-therapist, advised me to only give them to Ellie 6 days a week and then give her a rest. They are pretty intense and you never put them on a child directly or internally! Dilute, dilute, dilute! This is why they go in her humidifier and just a few drops are necessary.

If you are buying them, make sure they are organic and wild crafted. Whole Foods carries some commercial brands, but these lose their effectiveness in the mass production. Essential oils effect a person’s energy and body and emotions. In the US I get them from my friend Kerry at Useful Weeds. You can also order them for Materia Aromatica in the UK.

2. Freshly squeezed vegetable juices: carrot, beet, ginger, garlic juice once a day and given directly after being juiced. All of these provide live enzymes to help her system overall. The ginger will help her body burn out the infection in her lungs and garlic, especially fresh squeezed is an excellent antiviral, antibacterial, anti fungal, anti most bad stuff that effects the body. If I weren’t chickenshit I could have just tried giving Ellie these things instead of the antibiotic. But I am chickenshit and did want to experiment on her in this way especially since she was so sick. NOTE: The first day on the juices I used 1/3 freshly juiced combo as described above to 2/3 filtered water. Two days after that I used a 50/50 ratio. I cut the juice because this combination is very strong for a child.

3. Stopped giving her the goat's milk formula she normally gets as it was making her too gunky as most milk products are phlegm inducing.

4. Giving her the whey protein I described here. I am happy to report she is doing great on it. Even though whey is a derivative of milk - remember curds and whey - it does not contain lactic acid which is the thing in milk responsible for making people allergic to it, phlegm being one of the major symptoms of lactose intolerance.

5. Chest PT – meaning with a cupped hand you tap her rib cage in order to loosen up the phlegm in her lungs. The nurses showed me how to do this. I am so glad to have the nursing care when Ellie is sick because, especially in this instance, it is the only thing keeping us out of the hospital.

6. Red Lentil, beet, carrot, garlic soup – very watered down for some easy to digest and nutrient rich calories and more garlic.

7. Water and more water as well as watered down cereal. When Ellie was going through the worst of this on Monday and Tuesday she could not handle any solids and her system just needed fluids to keep all that phlegm moving up and out.

8. Tylenol Infant Drops. See, I walked both paths here – allopathic and naturopathic. Sacrilege I know, but she was in pain and coughing constantly and when her fever got up there I gave it to her and she was able to sleep. I was also able to sleep without the fear that her fever would get high during the night without me knowing it.

9. Flovent. The doctors prescribed this steroid to help open up her lungs and bring up the phlegm. It works even though it is difficult to administer.

10. Lots of hugs and love and sleep. I have been covered in Ellie who could only stop coughing if she were on her side on my chest. So there we were for a couple of days. I have never been covered in so much snot since I was probably her age. Sigh.

I am very happy to say that she is doing much, much better and able to laugh once again even though it makes her cough, which is a good thing to get all the “yuckies” out of her lungs.

Here are some more pictures of our trip. The first pic is of Ellie all dressed in a red velvet dress at her Nanny’s wedding. Someone else asked me what the hyperbaric tank looked like and you can see it here with Column (sorry to misspell your name!) Column volunteers his time to run the chamber for Advance. He is an ex-diver among other things. I think he is also an ex- 007 type, but he won’t admit to it. There are 3-4 gentlemen at Advance who volunteer their time to help out with the Hyperbaric chamber. Thanks to all of them. The last picture is of Ellie and Great Grandmother Bridie. Bridie is having a little "nurse" with Ellie. "Nurse" being the Irish phrase for having a snuggle. Ellie loves being the center of attention and getting lots of love from all manner of Grannies, Grandpas, Aunties and Uncles and Great Uncles and cousins in Ireland when we visit her family there. Wish we weren't so far away.

Disclaimer: These are the things I am doing to help Ellie get better but I am not writing this post to recommend these things for anyone else. Work with your own medical or naturopathic practitioners and your own inner guidance to help your child or yourself. I am just a mom when it comes to this, not an expert. This post might give you some helpful ideas but that is all it is intended to do as well as to let everyone who cares know that our little warrior princess has conquered pneumonia (because she so rocks!).

Oxygen On Planes or Why We Are Boycotting AA

Dave and I have been going back and forth about getting Ellie oxygen whenever she has to fly anywhere but especially to Advance for therapy. Flying is hard on her as it is on everyone at a high altitude with low oxygen. Every time we arrive at Advance or in Ireland it takes Ellie at least 2 weeks to recover. She is tired and pale and needs to sleep a lot and is not as bright and interactive as she usually is. Linda has been telling us that if we get her oxygen it will reduce her jetlag and will allow her to better assess Ellie as well as help Ellie get more out of the therapy. Linda prescribes exercises based on her evaluation of Ellie and it's hard to evaluate one who is exhausted from jet lag. Linda, as with all the things she recommends, takes her own advice. She uses oxygen every time she flys. She is opening up centers in South Africa and the Philippines and sees many families when she goes there with no extra time for fatigue and jetlag. After our big Scare with Ellie having a seizure as I described here, this time we decided that for our flight back we would request to buy some oxygen for her on the plane. We were flying American Airlines.

Dave called the English branch of American Airlines 2 days before we were to leave. They told him that they needed 72 hours notice for oxygen on planes and that since we had broached the subject at all they would now have to have one of their doctors examine Ellie to determine if they should let us fly at all. Dave tried explaining that it wasn’t medically necessary for Ellie to have oxygen on the plane but that it would help her with the jet lag at home. The airline representative he spoke with said that they would want one of their doctors to examine Ellie at check in, in order for her to fly. Dave said this was ok.

Great huh!

We arrived at Heathrow 3 hours before our flight and went to the check in. Alice, the American employee at the desk, started the check in process. In under a minute there was a problem. She asked for our medical release form. We asked what medical release form. She then, looking very put out, informed us that we needed one from a doctor for American to let Ellie on the flight. We said we didn't have one and that on the phone American Airline personnel told us if they needed to examine Ellie there would be a doctor here at the airport. Her response was, "Well I don’t know anything about that but, you're not flying today." We explained that we were only visiting England and did not have a doctor here. We tried explaining that it wasn't medically necessary for Ellie to have oxygen but only nice to have it in order to speed her recovery at home.

Alice was unmoved and by the pinched sour expression on her face getting more annoyed by the minute. She told us that we would not be flying today again. At this point I, ah, kind of lost it. I told her I wanted to speak to her supervisor immediatley. And I mentioned that if we were stranded in Heathrow with limited medication, diapers, and food for Ellie I would sue the airline for all it was worth.

Her supervisor came out pretty quickly and after a rather heated discussion took our case to their medical people whom we never saw. We cooled our heals by the check in desk and waited for 20 minutes. The supervisor came back and asked us a little about Ellie’s condition and we assured her Ellie had never had any trouble flying. She came back 10 minutes later and said we had been cleared to fly. She also informed us that if Ellie needed oxygen on the plane while in the air they would have to divert the flight.

This whole story was unbelievable to our friends at Advance as British Airways understands the need for oxygen on the plane and will gladly sell it to you. Virgin Atlantic gives it to you for free.

After this incident this same supervisor was very kind to us getting us on the plane first and out of her hair. That said, we won't be flying American Airlines again. Clearly the fact that one AA employee could tell us on the phone that there would be a doctor at the check in and then Alice never having heard of this shows that they did not have a policy in place to deal with this. Had they told Dave on the phone that we needed a medical release form from a doctor, at that point, two days before our flight we would have been able to get one. This is not the first time I have experienced their very poor customer service when it comes to someone needing physical assistance. On this trip for instance, we let them know that though we had Ellie in a stroller versus her wheelchair that she can’t walk and that we need to bring her stroller to the gate. This was fine but upon deplaning in Boston there was no stroller at the door and the employees on the ramp told us we had to go down stairs to get it. As it turns out down stairs meant baggage claim. We had to walk miles and wait in a long passport check line with no stroller. The stroller arrived in the baggage claim. What’s up with that?! When I was 6 months pregnant with Ellie I was flying for my company. I was having trouble lifting my case into the overhead. There was an airhostess coming down the aisle towards me. I asked her if she could give me a hand - I had my case midway there. She said if I was unable to manage my carry on I would have to get off the plane. And then proceeded not to help me but stare at me as if I had two heads. It was humiliating.

So you see, I have had it with them and won't fly with them again. Not to mention that on the way there we were in some sort of twilight zone of a seating arrangement such that when the person in front of us put back their chair the seat was literally 3 inches from your face. Very difficult to hold a Hypotonic child in this position.

So, sorry American, but you won't be getting our business anymore. And for the record, Alice should really go to customer service training.

What a long strange trip it has been

We arrived back from England and Advance on Thursday – exhausted. Our trip had two key purposes. 1 – Go to Advance for more therapy for Ellie. 2- Attend Dave’s mother’s wedding in Dublin where I was also the photographer. (Obviously his mom and step dad are a bit nuts but the pics actually turned out well). Ellie, is normally a great traveler. On this trip she was her usual self - happy and excited to get Mama and Dada in close proximity for hours at a time. She is even able to catch some z’s on planes and in her stroller which reclines back. This is definitely something she inherited from her father. But for the first time, we flew to Ireland via Heathrow to save money and use up the last of my road warrior air miles on American Airlines. Usually we fly straight to Dublin. This leg to Heathrow made our trip 6 hours longer than it normally is and the high winds caused even more delays. By the time we were on the flight from England to Dublin we were all exhausted – especially Ellie. We arrived at Dave’s mom’s house, gave Ellie a meal and then Ellie and Dave lay down for a nap. I joined them about 30 minutes into it after a bit of organizing. As I lay down beside Ellie, she turned to me and tried to sit up. She was pale gray and her right arm was pumping, hand fisted and hitting her head. She was trying to get to me. She was having the worst seizure she has had since her time in the NICU.

After a couple of minutes of this, I got the emergency seizure kit (Diastat) and gave it to her. The kit says you are supposed to wait for 5 minutes but this was a big seizure for Ellie so I did not wait. For another 7 minutes she was seizing. Dave’s mom called the ambulance. Ellie finally stopped seizing after a total of 10 minutes. I had her on her side as the folks on the emergency medical line instructed. I was talking to her and crying at the same time. She was reaching out and grabbing my hand. And gently reaching for her Nanny’s necklace. It was as if to reassure us that she was going to be ok. The ambulance arrived very quickly and they gave her oxygen and rushed her and us to the hospital. While the ER team was a little disorganized and had trouble getting an IV in, once we were on the floor in the ward the doctor there was excellent. She got all the right tests ordered when the ER folks said they could not be done on New Years eve. Ellie’s aunt later told us that she heard that same doctor telling off the technicians to kick them into high gear to get things done.

Ellie and I spent New Year’s Eve in the hospital. Ellie was monitored and slept on and off. Dave’s brother and sister-in-law insisted on staying the night in the room with us. They had us in a closed off room with two beds and a cot. It was different and nice to have help when Ellie is in the hospital. We haven’t had that since we moved to the East coast. Usually we are there by ourselves the entire time and taking shifts to manage work.

The Irish doctors conferred with our Boston neuro team and they both agreed. The scans came out fine.

Seizures are scary things. When Ellie was first diagnosed with them in May her neurologist stressed to us the importance of putting her on medication for them. In May her seizures were way less severe and we were concerned that the meds would keep her in a zombie like state. We were under the impression that the brain was only effected adversely from a seizure if there was a lack of oxygen. Our neurologist disabused us of this notion stating that in a developing child short term memory is erased randomly during a seizure. So seizures effect and delay the child’s development. I had noticed that Ellie would “forget” some things I thought she knew at this time and I think that was from the seizures.

The reason the doctors surmised that Ellie had this seizure was that her med dose had just been lowered by our Boston doctors (because Ellie had been symptom free since May). We wanted her on the lowest dose possible because she is only 4 and her liver is being asked to process a lot of meds already due to her reflux. We tried a drop of her seizure med, Depakote, and the stuff burns the tongue. I worry what it does to her insides. This lower dose combined with the stress of being tired may have just been too much for her.

Also, for the record, all the decisions we make for Ellie are never black and white. Someone recently said to me that “clearly you have a lot of guilt” over choices we have had to make for Ellie. This is not quite right. We are always choosing between two evils and hoping we picked the lesser one. There are always shades of gray especially when dealing with the brain. So it’s not guilt, but the difficulty of having to live in the gray area and always hoping you did the right thing, which does not always bear out right away but over time. Don’t get me wrong, I know we have done very well by Ellie and worked very hard and used all of our god given gifts and energy to do so. For me, I can’t really go to the place where I might feel proud or comfortable with all of this because I worry that I will become less vigilant. Maybe that’s posttraumatic stress talking. But I do not want to ever relax my vigilance over my daughter and her needs. I will probably never think, ok I have done enough. No, that is not in the cards for me this lifetime. I will be working to help Ellie until I die and that is that and that is ok. It’s a good problem to have because I have become a better person in doing so.

The scariest thing during the seizure was wondering when it would stop and thinking Ellie might die. And then when it did stop wondering if it took some of Ellie with it. We would not know this for a couple of days because she had to readjust to her new med dose and rest. Now that we are back she has remembered all the games we played before the trip and her language has come on even more. She is starting to make word approximations and this is very exciting stuff.

Just the same, seizures suck. I felt really bad for Ellie and what it must have been like for her which I can’t even imagine never having had a seizure. And I did feel guilt about dragging her tiny self across the Atlantic. Though she has done this twice a year for 2 years and never had an issue I still feel bad that she had a hard time of it. We are moving forward on a more formalized schedule of testing her Depakote levels. The entire trip after that we let her rest a lot. Usually I wake her up in the morning each day a little earlier to help her adjust to the time change. I didn’t do that this time so we spent the entire trip being up with her from about midnight to 4am. Ellie had multiple naps during the day though we did not.

We made the decision to continue on to England for the therapy and Ellie was fine for the rest of the trip.

The therapy session at Advance went very well. The picture you see is Ellie in the Hyperbaric Oxygen chamber with Dave. The Hyperbaric O2 Therapy is used to give her diaphragm a work out to adjust to the new therapy regimen. We were given double the amount of exercises we had before which is going to require twice the commitment we had. We are on for it. It’s encouraging to look at Ellie’s recent photos from this session and see all the progress she has made. Her head control is so much better. She is more solid in general and can sit up straighter and is so much stronger. Her coloring too has noticeably improved where she used to be so pale. Her reflux has also improved greatly which is a wonderful thing.

Regarding nutrition. The turkey I mentioned trying was only making Ellie more acidic and reflux more as well. Linda has discovered whey protein that is not sweetened. We took some home with us and it’s excellent so far. I am trying it out myself as well. It is mixed with water and is very mild. You can find it at myprotein.co.uk. We are starting slowly and so far so good. Ellie usually shows adverse effects to foods either right away or over a few days so I will keep you posted. We are also going to add some live enzymes to her diet by juicing vegetables and grapes. Grapes are also very good for increasing motility. We tried Ellie on both before but she was too sick to handle them a year ago. So I am hoping she will be able to tolerate them now.

We are back and moving on from the trip and the Ashley mailstorm. To borrow a phrase from Jacqui and apply it to trying to discuss the whole thing somewhat rationally – you are damned if you do and damned if you don’t. I am tired too. Uncle!

Wild Blue Yonder

Hello and Happy New Year! We have been to the mountains visiting my sister and now we are off to Ireland for a family wedding and England for more therapy at Advance for Ellie.

I am hoping to catch up with myself there and share some of the more interesting observations and pics from Christmas and our travels. Dave and I decided to take a huge step towards greater intimacy by sharing one lap top for the entire trip. I know, I know, it's batshit insane and could result in divorce or the death of one of us or somebody losing an eye. But it has to be done. Minimizing the amount of crap we have to schlep across the Atlantic is definitely a higher priority than marital bliss. Giving us the benefit of the doubt for being rational adults who will be able to share said lap top, I should be posting again soon. If I don't post soon, you know that my man has won the lap top armwrestle and I am tied to a chair so he can surf cyberspace in peace. Ahhhh togetherness, there's nothing better.

Nutrition and the Brain Damaged Child Part II:

Responses to the excellent comments, Ellie’s diet, Food Combining and More.

First of all, when I read Emma’s, Jacqui’s and Dani’s comments I just thought to myself, This is what I LOVE about blogging. The discussion can be informed and enriched by various points of view. Instead of answering all individually I thought I would put it in this post. (Emma, I will get back to you on the primrose question. I do take it as a supplement and it's great. But I know someone who knows a lot more about that and am trying to get her to chime in.)

If you are just coming into this discussion on nutrition you can read my first post on it here and see some of Jacqui’s comments at her site here.

Body Weight and CP
On the topic of the right weight for children and people with CP, Emma makes an excellent point. There is a balance. I wrote that children with CP are better off on the lighter side. Which I believe is correct. Emma in her comment illustrates this with her experience being on the heavier side. However, she also makes a great point that when she was too thin she was getting skin breakdown on her “bony parts”. This same thing happened to Ellie when I first took her off all the sugar and bad oils. She lost some weight. To give you an idea of this, when she was 18 months old and on the hideous j-tube and on the medical diet as described in my first nutritional post, she weighed 19 pounds and she was about 24 inches long. She got a bad stomach virus around this same time and was hospitalized for 8 days and lost one pound of weight. Then I took her off the bad diet and she lost another pound. At 17 pounds she was Ellie no butt as one of our friends liked to joke. And her tail bone paid for this. We had to watch it really closely and add extra padding to her seats. Luckily we weren’t doing a lot of sitting because she was on her tummy. It was hard to see her gain weight but over the course of the year she improved dramatically. Her reflux decreased and constant vomiting and gassiness, she moved more and started rolling. She was in general happier because she wasn’t feeling so awful all the time. She also started sleeping better only waking up 2-3 times per night versus 7-10. Believe me this makes a difference. We were then pretty quickly able to switch her back to a g-tube, which only goes into the stomach. The j-tube reached right into the intestines and was painful for Ellie all the time. Emma’s point is well taken that there needs to be a balance. This discussion needs to be outside the realm of any Vogue-esque like weight ideal. That is not what it’s about. Ellie now at 24 pounds has a bum and it is a good thing on all counts. It’s great to see her muscles developing and some fat on her thighs and full cheeks.

It took her a long time to gain back the weight and it seemed like between the new diet, the new therapy we were doing with Linda Scotson and the very gradual reduction of reflux and more sleep because of these things that she has been ramping up on all measures of health ever since. At her four-year appointment she had gained 7 pounds in one year and now she is 36 inches long and weighs 24+pounds. She also gained 3 inches in height and 2 centimeters in head circumference this year as well as many, many developmental gains. Last May she started to have seizures too but Linda gave has a theory on that about it being a response to the increased blood flow to the brain blowing toxic waste left over from the trauma and the bleed she had out of the small blood vessels there. That is another whole discussion.

Any way, no one could believe that Ellie would do so well on this diet including Dave. The diet Linda suggested and I put Ellie on is totally counterintuitive to traditional thinking. But as I mentioned in the other post it makes total sense when you compare an injured, weakened child to an invalid versus a star athlete. As I mentioned last time these high fat high sugar diets are what you would want to give someone who is highly physically active; their metabolism at high speed and excellent motility. NOT someone with the opposite conditions.

Ellie’s diet from the time she was about 2.5 to 4 years of age: Note that all ingredients are organic. Between ages 18 months and 2.5 we put her on a whole foods diet that was really rich in fat and high calorie and she did really poorly on that. Finally we came to the diet I am describing below after much back and forth between Dave and I and several discussions with Linda. This diet is counter intuitive if you have come out of the NICU experience or dealt with traditional nutritionists.

Morning Meal: Flaked Millet with Rice Milk and then we would add 2.5 gradually working up to 5cc (1 tsp.) Flax Oil and her vitamin. We also added the supplement Ambrotose that was recommended by Linda. It is supposed to help children assimilate the natural proteins in all foods. (If we could have used soymilk we would have because it has more protein, but Ellie is allergic to it. Rice milk is not optimal because Rice is acidic. But we needed the calories and she seemed to do ok on it. I am hoping to get her off it altogether. I have been experimenting with aduki bean milk. You can make milks from grains and nuts with a soy milk maker. In truth I have not spent enough time on getting her on a better “milk”. I could even combine rice and aduki beans to make a complete protein. And this is a nutritional project still to be completed.

Lunch (2-3 hours later when the cereal has been digested): Nanny Goat Formula. We started off using the goat milk formula versus plain goat’s milk because it has a balance amount of nutrients and vitamins. Ellie has done really well on this. If your child cannot tolerate soy, goat milk has a lot of protein and the molecules are smaller and more easily digested than cow’s milk. We give her actual goat’s milk from time to time and she even more easily digests that. Our GI doctor has told us that this is popular in Mexic but that the children end up with a vitamin C deficiency if they are only given goat’s milk.

Snack Meal #3 (2 hours later): A non starchy all vegetable meal with vitamin, Ambrotose and Flax oil added. This is food combining – you don’t want to ever mix animal protein with starch. This is not Atkinesque. For this meal I make her non-starchy vegetable and legume purees consisting of cooked red lentils (easier on the system than green) and carrots, celery, leeks, garlic. Or zuccini pureed. Green pea soup as well with carrots and celery. I also make her a mixed veg with kale, summer squash, spinach, carrots, leeks, and cabbage. This tastes great and I always ask myself why I don’t make it for Dave and I. Ellie has the best diet in the house. All of these things are very plain with no salt or spices and all very good for her. Starchy sweet vegetables, being non optimally combined with proteins and sweet make her reflux more. These include: sweet potatoes, butternut squash, potatoes, parsnips. We have tried all and all don’t do very well by her.

Now that she is so much bigger I have added in turkey soup for this meal. I take turkey thighs over chicken because they have more amino acids. I cook them slowly with a small amount of water, a couple of carrots, one clove of garlic and celery. Celery is great for digestion and adds a subtly salty flavor to the food. Puree this all up. Ellie doesn’t really like it so we bolus her. She loves purreed carrots and zuccini and will eat that up – it’s like candy to her I am sure. I am not sure the turkey thighs are the best thing at this point because Ellie is not sleeping great and seems more acidic. This will sound weird but I can actually smell the acid on her breath when it gets bad. She also seems gasier so I have stopped the turkey this week. I did add in avacodo with the veg puree – about a third of one and she seems to be tolerating that. Avoacodos are great, I give them to her raw so she gets some live enzyme and they are jam packed with omega threes and other vitamins. Linda I think would have her on no meat at all. But Ellie is type O blood and Type O’s need their meat. For more information on blood type and diet here is an excellent book.

Tea/Dinner Meal #4: The last meal of the day one hour before bed we give her grain again and the rice milk. On this diet we don’t feed her at night. Recently in the last 6 months Ellie has been waking up in the night hungry. So we will feed her then and I increase her portion sizes. She has been growing quickly and her body wants food so we give it to her. I have been working hard on finding ways for her to tell me she is hungry and in fact give her that as a choice through out the day and if she picks it offer her food.

A note on portions and meals: For someone who has week digestion it is easier to eat 4-5 smaller meals than 3 big ones. The conundrum is that eating more meals speeds up the metablism and makes it more difficult to gain weight. But if you have a kid who can only handle small portion sizes, then you have to give them more meals. Or (sarcastic humor alert) just go the medical route and have their esophoguses’ stapled shut…

I had a hard time with portion sizes. I don’t have other kids and did not know what Ellie could eat. She went through a period 10 months ago now when she was eating a ton of food by mouth. I remember people saying to us, wow your kid ate all that, mine won’t. Ellie at this point could down one and a half cups of food in about 15 minutes by mouth. It was a great time to be alive. Sadly we are back to have her refuse to eat and be really distracted. There are a number of reasons for this but are off topic and will appear in another post I am writing about sensory integration. Anyway, it was then I realized what a good portion was. It was then we stopped calling it feeding time and calling it mealtime. It’s amazing when she does a normal thing how you see how far away from typical you can get. It’s like paradigm surfing.

A note on Rice: It is better for children or anyone with a compromised system to eat white rice versus brown because the husks of brown rice have mold in them, which introduces another toxin into the system that they have to deal with.

A note on Grains: I am a big, BIG fan of Millet. It’s one of the easiest grains to digest. Whole civilizations have existed on Millet as their staple food. It has a ton of great nutrients in it and won’t clog the intestines like rice can. If we can’t get purely flaked millet we get a multigrain-flaked grain cereal (with NO wheat) and use that. Mixing grains, other than wheat, is also very good because you triangulate all the good vitamins and minerals between the different grains. But if you child is having a hard time with digestion in general – start slow, start with millet.

A note on organics: We are big believers in organics. Literally everything we feed Ellie is organic. We eat only organic meat and dairy. Dave and I are not as religious about it as some people I know meaning that we will eat out at non-organic restaurants etc. But at home, especially with dairy and meat we eat organic. As a woman this is especially important and I tell all my friends if there is one thing they switch to organic on it should be dairy and meat because all the antibiotics, hormones and chemicals they put into the cows and pigs and chickens reeks havoc with the female reproductive system. There has been 100 percent increase in Lupus over the past few decades. I believe it’s from all the crap they put in food. In the patriarchal system many things that could affect women for the negative are overlooked and under valued. There are also limited studies on women. One way women can start to get some control back is to NOT purchase products that are especially harmful to them and ask their grocer for better products like organic meat and dairy and even feminine products without bleach. This should be a whole other post. It just galls me sometimes the crap manufactures put in products. Sometimes I think they do that because the big multinationals are trading and selling their waste products and need some where to put them so they put them into women’s jewelry and tampons etc.

A note on protein and when to eat it. This one is directed at you Jacqui in response to your thoughts on why Moo is not sleeping well. When I first read that on your site I wondered if he was getting a protein meal late in the day. Ellie has really slow motility. I wondered and surmised that Marshall’s motility might not be optimal either. That’s a function of weak sphincters I mentioned in my first post (something Jacqui is well aware of I am sure). This point about protein ties into the principle about sleep and eating. Protein takes the longest amount of time for the body to digest (oil slows motility down too). This is why we don’t give Ellie any protein after 3pm. (Now we just started giving her the turkey thigh soup at around 4-5pm and she isn’t sleeping as well and I am wondering if that is why – but this is new and there are other factors to consider like we are coming down on her seizure meds.). But if Marshall is getting a lot of animal protein (milk) right before bed his body will spend most of the night digesting it. This will interrupt his sleep and weaken him in general as his body organs won’t get to do all the renewals stuff they need to at night. Just a stab at trying to help here Jacqui. I myself don’t like to eat protein after 5pm because I wake up feeling bad and don’t sleep as well. If you have to eat late at night eat a piece of fruit which will digest the quickest. We can’t give Ellie fruit at night because it is too sugary and makes her very acidic. See how tough this is!

A note on palate: When you eat a lot of rich foods your palate gets very high tuned so that you continue to crave foods that “taste” good. To a highly tuned palate rich foods are more taste-full. Transitioning to a lower more naturally tuned palate can be rough at first because the less rich food may be tasteless to you until your palate adjusts. And palates do adjust. Try cutting out sugar for one week and rich fatty foods. Start eating more raw foods and simple grains by the end of that time they will taste a lot better and if you go ahead and eat cookie after that it will burn the back of your throat with it’s sweetness. Dave, god bless is adventuresome carnivorous Irish heart, did a fast with me one year ago. We were feeling really depleted by everything and worried about our health so we did the master cleanser for 7 days (DO NOT TRY THIS AT HOME OR WITH YOUR CHILD!). To break this fast we had steamed vegetables (bok choy, cabbage, carrot, butter nut squash with no salt or anything). It was the nectar of the gods. Dave ate it and said, “What did you put on this, it’s amazing!” This was the first time I think he ever had his palate tuned so low and he was right, it was an amazing meal. I made that meal for us again a couple of weeks later when we were back to our usual eating habits and we both noted how it did not taste nearly as good.

On-going journey
When we go to Advance in January Linda is going to show us a new protein source. We are at the point where we do have to change Ellie’s diet again because she is so much bigger. We will stick to the principles I am outlining but make some additions now that she is healthier. It’s important to note that she made all these gains on the very simple diet of grains, goat milk formula, non-starchy vegetables and water. Even Ellie’s GI doctor, when Ellie started to thrive on this literally said to me, “You proved me wrong.” He’s a great doctor from Mexico and was open to me trying this new diet because in Mexico there is no Neocate and Polycose. He admitted that when there he encourages the mothers to give their kids sugar. Sugar and fat, as we have proven are not the best way to get these kids to gain weight. When Ellie was on all of that she gained weight but she did NOT gain inches in height and her development slowed because she couldn’t sleep, and was sick all the time. On this simple diet she has been thriving and steadily going up hill on all fronts.

Disclaimer
I want to make it clear that I am NOT a nutritionist. My only background in nutrition is a life long interest, lots of books (a Good Will Hunting approach), and being fortunate to have some close friends who are either herbalists, aroma therapists and some who have followed alternative diets their whole life and saved themselves from cancer and many ills.

Last Disclaimer
If your child is thriving on some of the foods I said were bad, don’t mess with it. Ellie had a massive injury at birth and was very, very bad off after that for a long, long time. We had to figure out a lot of things I hope most people never do. I am only recounting what helped her in hopes of helping other parents.

That said, I truly believe and practice these principles with Ellie and she is better for it. We have her blood nutrient levels checked each quarter because she is on a reflux med that is highly watched – cisipride and all her vitamin levels are coming out consistently well. There’s lots of proof that she is doing great. But still we are not allowed to stay complacent. As she grows her body’s dietary needs change and we have to figure out what to do all over again which is the point we are at now. It’s a good problem to have.

Nutrition and the Brain Damaged Child: Part I

This one is for Jacqui and Moo.

Sometimes I think that there is so much to say about this I get overwhelmed. But at other times I know too it comes understanding and practicing a few important principles. I will share those first. I have a long background in studying nutrition because it has fascinated me from an early age. However, most of these principles and especially as applied to Ellie I learned from Linda Scotson at Advance. I will tell you the principles and then describe our journey and what has worked for us. Disclaimer: This is a cautionary tale. Though I believe in the basic principles wholeheartedly because they have worked for us and because they are logical, every child is different. A person’s blood type definitely comes into play in terms of what they should eat as well.

This post pertains to post NICU experiences. Ellie survived her 133 days in the NICU first on Total Perenteral Nutrition (TPN) through a PICC Line and then on breast milk. When Ellie got home we had her on breast milk for as long as we could. I pumped for Ellie for 19 months and my dear friend Kate donated her extra milk for over one year. After that we tried the nutritionist/doctor recommended diet, which was a disaster. Then we found Linda Scotson and went to England to go to Advance which is when we started changing Ellie’s diet and her health has been improving dramatically ever since.

Basic Principles Necessary for Understanding Nutrition and the Brain Damaged Child:

1. The Circulatory and Respiratory System and sphincters are weaker in a child with brain damage. When the brain is injured in any way the body sends most of its nutrients and oxygen to it first. The body instinctively protects its brain. When this happens to someone in infancy or in premature infancy like Ellie, other significant parts of the body become much weaker, the diaphragm and all the sphincters especially. This is important to understand as it dictates how well the child will breath, saturate their blood with oxygen, digest food, and heal.

2. Brain damaged babies and children have very few reserves. Reserve means a person’s ability to fight disease and infection. If you have a lot of reserves you get over colds quickly without too much taxation on your body. Elderly people often have low reserves and that is why they are fed broths and things easy to digest when they are sick. This same logic is not applied to babies and children.

3. The Twinkie Rule: Eat/ingest food that gives maximum nutritional benefit to the body while using the least of the body’s nutrients and energy to digest and metabolize the food. It is especially important for people with low reserves to eat things that give them the maximum amount of nutrition that takes their body the least amount of nutrients to digest. This is what I call the Twinkie Rule. When you eat a Twinkie you get nothing from it nutritionally but you use up nutrients and body fluids to process / digest that Twinkie. So your body is actually depleted / has less nutrients in it after eating a Twinkie than before. If you have a lot of reserves like most healthy people, you will be fine having the odd Twinkie here and there. But have you ever noticed how if you are run down and you have sugar you will get a cold or virus?

When I feed Ellie I want her body to get the maximum nutrients with the least expenditure of her energy to do so. The medical paradigm nutritionists had Ellie on a high fat and high sugar formula, basically a Twinkie diet with a horrible synthetic multivitamin thrown in to *beef her up. They did beef her up to some degree but to do this we had to get Ellie a J-tube, which fed the food directly into her intestines so she could not vomit it up. The rich diet made her sick as a dog every single day for one year. She had horrible gas from this and we were venting her 30-50 times per day – i.e. meaning opening up her gastrostomy tube and letting the gas escape her stomach. The j-tube was also really painful for Ellie and she woke up 7 times per night in agony that nothing would fix. We spent many whole nights rocking her, putting her on her stomach to relieve the pain, venting her, trying to calm and sing to her. She felt awful and we were exhausted. No one was sleeping.

It is important to note that during this time Ellie did gain weight as you can see by her arms in this picture. However, she did not gain inches in height or head circumference and had a definite lack of developmental progress in general. Why? Because she was sick, tired, gray of pallor, exhausted, gassy, all the time on this diet. We truly gave the nutritionist/doctor/big huge multinational companies pushing synthetic, surprisingly profitable baby food down our throats our best shot. All along the doctors were pushing us to get a Nissen Fundoplication, which would make her permanently unable to burp or vomit as subject her to another surgery. It would also have made it very difficult for her to ever eat by mouth. Something the doctors had decided for us that she would never do. And they were completely wrong on that one. This is what galls me about the medical paradigm. It says if something is not getting better to manage with medication or “nutrition” the next step is surgery. The food makes the child sick so make it so the child can’t vomit it up. This is the medical paradigm for you. Is this totally BATSHIT INSANE, or is it just me?

Instead of saying, gee maybe the food we are feeding her is not working and we shouldn’t we change that, they say, let’s surgically close off her stomach and force the food into her. Why listen to what her body is telling us? We are nutritionist and doctors we know better what to do than the body does. The nutritionist would come to our home and ask why we were not getting enough volume into her. She would eye us suspiciously like we were purposefully starving our child. I thought she was going to call child services on us eventhough Ellie’s weight for her size was ok. But when her weight was compared to uninjured non premature birth babies it wasn't even close to the curve.

I understand the doctors and nutritionists have true concern for kids with such injuries and want to ensure they are getting the best nutrition. All you hear in the NICU is how your kid gaining weight and getting bigger will take care of all things. And in part, it's true the bigger they get the healthier they get. What I am saying is that sometimes practitioners of the medical paradigm can't see the woods through the trees. They get a little dogmatic about it versus looking at the child. Look at the baby was the first rule we learned in the NICU from dear Dynio.

But I digress. This nutritionist wanted us to feed her 900 cc’s of this mix of Neocate and Ploycose and MCT Oil per day. We tried but between the vomiting and pain and venting we were unable to get the volume in. At this time Ellie was on a 23 hour per day continuous drip feeds. Let me tell you that carrying around a Kangaroo pump whenever you need to move your baby is tough as well as the stares. Being fed all the time also does not allow the body to rest and do the maintenance it needs to when it is not digesting at night.

4. Sleep is critical for healing the brain and body. Sleep is so important to protect in anyone but especially a person healing from brain damage. In sleep the body works to heal itself, replenish it’s supplies of bile and other important fluids. REM sleep is the time when memories from the day are permanently incorporated into the neuro net and become things learned and in babies and children developmental milestones. Rich, sugary foods can interrupt sleep because the body is too acidic and reflux occurs. Blood sugar levels rise and crash and are harder to regulate when the body has ingested sugar which can also interrupt sleep.

5. All cells in the body build up acid. Uninjured typical bodied people get rid of this acid by moving around. In someone who does not move much the acid builds up in their cells and they become very acidic. Pair this with the weak sphincter muscles and slow motility and you have a recipe for severe reflux or GERD and eventually esophageal cancer and a very hard situation for the person. A low acid, high alkaline diet is really important to counteract all of this. The medial paradigm diet is high acid with its sugars and way too rich with its fats. I will go into the different food groups to cover acid and alkaline foods.

6. *Brain damaged children with CP are better off being on the thin side. Any extra weight is very hard on a body with an underdeveloped circulatory system and muscle weakness due to neurological issues. All children with brain damage especially those whose brain was damaged by an anoxic event – meaning a lack of oxygen have a weakened circulatory system. The therapy we are doing with Ellie each day works on strengthening her circulatory system as I have described in other posts. But there was this need on the medical nutritionists’ part to put some meat on Ellie’s bones at all costs. Ellie was skin and bones for a time after I took her off the medical diet. But now as you can see she is much healthier. Extra weight on a person with neurological problems just taxes the already low energy reserves of the person even more. There is a fine line between being at the right weight and over or under weight. When you feed a child in this predicament whole and simple foods and they are get enough sleep the body will find it’s ideal weight for the state it is in at the moment. We saw this with Ellie along with greater growth and developmental milestones, less illness, way, WAY less vomiting and rosy cheeks.

7. Proper food combining is essential. A friend of mine always used to say, “You are only as old as your enzymes.” This is in fact, a good point. Each type of whole food you eat takes a different enzyme to digest. Fruit takes one kind of enzyme to digest it and vegetables take another. Even within the fruit food group, melons for example put an extra load on the body to digest so they should not be combined with anything. Meats take different enzymes than carbohydrates. Eating the two together is particularly hard on the digestion. A great book that goes in depth about this is Healing with Whole Foods: Oriental Traditions and Modern Nutrition by Paul Pitchford. We have seen a huge decrease in Ellie’s vomiting and reflux due to combining the right foods. Of course this ties into the Twinkie Rule.

My Reference Books:
Prescription for Nutritional Healing by Phyllis A. Balch, cnc and James F. Balch, MD
Healing with Whole Foods by Paul Pitchford
The Body’s Many Cries for Water by Fereydoon Batamanghelidj, M.D.
The Rainbow Diet by Gabriel Cousens, MD
Herbs and Magic Healers by Paul Twitchell.

If you are new to learning about nutrition reading the first chapters of Nutrition Healing will run you through many of the basic concepts. Healing with Whole Foods discusses lifestyle choices that affect the way your body assimilates food as well as information on food combining and recipes.

Part II will include details of the diet that has helped Ellie thrive, food combining and more.

End. Radio. Silence.

Hello out there after a little posting break. A break that did not really feel like a break and was not intended to be a break per se. Per se – that is a funny word – no? It’s from the Latin and means intrinsic. You can look it up here. Sometimes I use words completely appropriately with no consciousness regarding what they really mean. They just sound right and work for what I intend to communicate. Does that ever happen to you or am I just some freak of nature? Though if you answer yes to both you would not be the first…

Anyway back to the point. The unintended part is simply because we have been balls to the wall dealing with a ton of tedious yet critical things to do since we got home from our Thanksgiving trip. It’s my karma for getting pissed off at the lame ass mothers ignoring their kids whilst shopping. As you can see I have learned nothing.

It’s great getting away from home and the enormous TO DO list that shouts through the ethers at me there. Our latest get-away was to the country to spend Thanksgiving with friends. All emotional yucky family quagmire completely sidestepped in favor of the sweetness and light of hanging out with old friends, at least from my perspective. I don’t think that was how Ellie felt.

My dear friends, whom I have not celebrated the holiday with since the birth of their first child eight years ago, now have three children. They are all great kids and all really sweet with Ellie. There were a lot of people around us for the couple of days we were there and from Ellie’s perspective a lot of competition for Mama’s attention. She kept a trained eye on her toys and the other kids especially when they were interacting with Mama. She also started vocalizing way more than she ever has at home with me. I think the picture speaks a thousand words. Notice how her mouth is open and she is working hard to be heard over the person who had the audacity to speak to her Mama.

I have noticed she “talks” more to Dave than me. I think it’s because up until this weekend, I had her body language and many of the sounds she makes worked out. To others watching Ellie and my interactions it probably looks like I am a bit psychic the way I know what she wants just by looking at her. Being trained to watch the body language of executives in order to keep strategic planning sessions on track, makes understanding Ellie's body language easy. Let's face it, her hidden agendas are way more genuine. Though, I must say her needs are becoming increasingly complex. Lately she will often reach for the pen of her Magna Doodle and put it in my hand and want me to write what she wants. I think Ellie might think I am psychic, just like many kids think their parents are omnipresent and omniscient. I think I will not so easily dispel this notion for her as it could come in handy in the teen years.

With all the festivities and visitors at my friend’s the environment was filled with the cheerful sounds of laughter and talking and cooking. To get heard above what she may have experieinced as a bit of a din, Ellie quadrupled the volume and quantity of her vocalizations after just a few hours of being there. It was great in the sense that she was expressing herself. One of her weakest areas is in expressive language and it’s probably partially my fault because of the pseudo psychic thing I mentioned above. During the Thanksgiving meal, however, she was vocalizing more and more and insisting on being heard. I wonder if she was around other kids more often if she would be speaking. Many of these new and loud vocalizations sounded suspiciously like whining and were putting my overloaded host over the edge to the point where he had to take a nap. I felt kind of bad about that, though he was really gracious about it and assured me it was not because of Ellie's new found voice.

What I really felt bad about was the fact that I didn’t know what the heck she was saying. At least she was vocalizing about lots of something loudly. All mothers of preemies can appreciate the lung capacity she has gained in order to do this. I attribute that to the many thousands of hours we have spent doing the Scotson Technique Neuro Respiratory Therapy with her. At Advance they never tell you about any side effects – which this new loud vocalizing seems to be. When Ellie was in the NICU and surviving day after miraculous day we used to say, “Give us your worst!” I think she is holding us to that.

I try to be careful not to reprimand her for whining when she might not be. I am reminded of our friend Francesca and her mother. Francesca has CP and is a couple of years older than Ellie. She has made amazing progress. Her mother said to her one day, “Francesca, stop whining!” Francesca replied, “Mommy, I wasn’t whining, I was singing.” How bad did her mother feel?! Yikes. Is that what it’s like for Ellie?

I think about that all the time when Ellie is vocalizing. I take each utterance as a communication though sometimes I do lose it and say, "Ellie enough!" That does get her attention and gives me just about 10 seconds down time. I don't do it too often though for fear that I will send her the wrong message. I want her to know I support her attempts to talk and communicate - Express Away! I have noticed when I answer her correctly she gets really excited and when I try to converse with her she gets more susinct in her attempts to talk.

I imagine that being mute is incredibly isolating. People make assumptions all the time about Ellie because she can't speak. They think she is stupid or talk over her and ignore her. Right from the beginning even when she was unconscious we would tell her what was happening to her and try to explain. We consciously decided to take it for granted that she was in there and conscious and on some important level needed and wanted to know what the heck was going on around her that she had no control over. If you are mute, it's very difficult to get control. Even with this attitude at times I have to consciously remind myself that she is not just babbling or whining but trying to make sense to me. Where do typical whining episodes of a small child fit in to that? I yiyiyi

It's clear to me that I need to crack the code. I need Ellie's Rosetta Stone. If anyone knows where I can get it, do let me know.

The Bravest Little Girl

Ellie playing with Pooh after her nap.
This post is dedicated to Ellie, who is the bravest little girl in the world and has had a rough day. The past few posts I have joked about this or that and in truth, it has been somewhat of a gallows humor. This blog is supposed to be about parenting a child with disability. Sometimes I get a bit punchy before facing really tough things. Things I would not choose to face in a million lifetimes if I had my druthers. And I have been facing today for a couple of weeks. Now that we have faced it, I can write about it and maybe save another poor mother or father some trouble. It’s not that we mothers of special needs kids are not informed. It’s just that each “intervention” carries an element of unknown consequences. When we were in the NICU we learned early on that all of Neonatology involved choosing between the lesser of two evils. Today we made such a choice and have lived to tell the tale.

To tell you what happened and why we did what we did I have to make sure you know some basics about cerebral palsy. For those of you already living the dream skip to the next paragraph. All children with cerebral palsy have varying and mixed degrees of Hypertonia and Hypotonia. Hypotonia means your kid has weak muscle tone and is “floppy”. These kids might have trouble holding their head up and sitting, etc. Kids who are hypertonic are stiff and in extension (arms out, legs out) a great deal. This is called spasticity. Dystonia is when you go to do something and you go into a rapid extension. Ellie, lucky girl, is Hypotonic with an overlay of Spasticity in her legs. To compound things, the act of growing can make spasticity worse. The interesting and awful thing that happens when the brain is damaged is that it turns things unendingly ON. In Ellie’s case the Equinovarus deformity from the spasticity in her ankles is due to muscles that are constantly being flexed and pulling her foot in. Try it and see. Flex one of your major muscle groups like your calf muscles or bicep. Hold it for as long as you can. Sucks, huh? But now you have a modicum of an idea what spasticity feels like. In a growing child such a thing can deform limbs. You may have seen people with CP who have a hand that is turned down at the wrist at a seemingly impossible angle and held close to the body. That is the result of spasticity, the constant firing of neurons to the muscle which in turn pulls the bones and ligaments permanently out of place to the point where eventually there is a complete loss of function.

Ok – there are some cerebral palsy basics for you. Today we went to the Floating Hospital in Boston and had Dr. Webster perform a Botox treatment on Ellie. Botox you say?! Yes, there is actually a more noble application for Botox than making sure no one sweats at the OSCARS and Reese Witherspoon’s pretty brow is not furrowed.

Dr. Harry Webster is on his game and passionate about his kids. He did the whole thing with good pain management and a deftness that comes only to those surgeons that are truly talented. He was in Flow. Which is just where you want someone to be when he or she pumps botulism into your kid’s leg muscles.

Some days I can’t believe the details of my own life. As an expectant mother you consider things like the kind of diapers you will use, the books you will read to your kid, the food you will feed then. Anyway, I know you may not know me well but these are words of high praise for a doctor. We are not the type of people who just blindly do what the doctors tell us. We have been putting off this treatment for two years. There are some interventions like getting Ellie a Fundoplication that we have outright refused. (I really need to write about g-tubes, eating and nutrition and fundo’s).

If you are facing Botox injections with your child, I really believe that deciding when to do it you should consider two criteria. 1. Is your child ready to walk? 2. Are they at risk of permanent deformation and contractures that will ensure they never walk?

Ellie met both criteria.

A word on Pain Management:
Two years ago, among the many ‘signs’ that it was not the right time to give Ellie Botox was the fact that a doctor at another well-known hospital scheduled the treatment for her with NO pain management at all. After having seen the procedure today and my child’s reaction to it, I can tell you, providing pain management is critical. Getting Botox is very painful even when sedated. Botox is shot directly into the muscle. Ever had a tetanus shot? Multiply the pain of that by 100.

Our pain management for Ellie consisted of 3 things:
1. Emla Cream. This was put on the exact point of the injections including the shot of Versed. Like, most NICU babies Ellie has had over 200 needle sticks, so why add to that?! That said Emla only works on numbing the skin, not the muscle, which still hurts like a bear when poked with a needle. Again, think Tetanus x 100.

2. Versed. This was injected directly into Ellie’s thigh muscle and made her drowsy and is supposed to make her forget any of this ever happened. As I write that it sounds awful and if you click on the link and read the description you will think I am awful too to ever let my kid have that. I feel like some psychotic parent covering up their crimes with some designer drug. However, after seeing the Botox injections, I am glad she will forget because she would have never forgiven me otherwise.

3. Over the counter Ibuprofen the minute we got home. Dr. Webster said the injections are the hard part and once the Botox is in, it does not hurt. I wish I had Reese’s number so I could ask her directly. Does that stuff in your forehead hurt right after? And if so, for how long?

So you might be thinking, why not put her out completely under general anesthesia? Good question. Our answer is that this is counter indicated for anyone with any brain injury. When kids like Ellie go under they can be set back for weeks and possibly months in their functioning and development. It takes a long time for their brain and already weakened bodies to recover from general anesthesia. We minimize Ellie’s exposure to anesthesia as much as possible. For example, we have never had to give it to her for MRI scans of her brain. During MRI’s there can be no movement. We have been able to distract her with mirror balls and light and songs and whatever it took. For her ABR’s (brain response hearing test) we have been successful at scheduling them at naptime so she would sleep during the test. My main point is that sometimes medicine becomes dogmatic. I have a bias against younger practitioners who still think they are god but are too afraid to think outside of the box. For example, always pairing a g-tube with a fundo even if it ensures that the child will not eat by mouth. If a doctor’s answer to your question is ever, because that is the way it is always done, or any derivative thereof, find another doctor who thinks for him/her self and considers each patient a unique case.

As parents we have questioned everything and educated ourselves so we could make the best choices for this little soul that is in our care. No child deserves less. When we don’t know what something is, we educate ourselves. The only prerequisites we have are our abilities to read and think. There are a ton of resources on line (see the links in this post). We have bought many medical texts in order to catch up with the doctors and understand the choices being laid before us. We had to because our “Yes, do that” or “No don’t”, especially when Ellie was in the NICU, meant the difference between life and death for her. So we wanted to understand our choices. We found that the worst doctors don’t take into account the patient’s whole life. When they first told us about shunts I had questions about the tubing that would go into Ellie’s abdominal cavity and it’s effect on her reproductive organs. That stopped the team in their tracks.

Isn’t this a mother’s logic? I think about Ellie’s whole life from birth to death and I don’t want her choices limited because someone was not being thoughtful enough to consider all the implications. (Incidentally, this is also makes me a very formidable chess player that Dave still has yet to beat.)

We have also learned so much from other parents. In the NICU two very wonderful people who were a few months ahead of us in their journey gave us some very good advice. C and W told us to ask each question three times to three different people. Best advice ever for any parent facing a long NICU stay. We still do this. The thing is, you always get three different answers. Medicine is not an exact science that is why they say practicing medicine. Woe to any parent who does not participate in the thinking process of solving their child’s issues.

Upon climbing off my soapbox, I can tell you that Ellie is sleeping now. We will see if the Botox works. The next step is serial casting to get her feet back to neutral so she can stand on them. I know Ellie would much prefer to be able to ambulate or walk to get her toys versus having to roll a few feet, look to locate, and roll again. Ellie is a great roller but when you have to roll to get stuff you can get stuck on other things like couches and corners. Ellie wants her independence; this I am sure of.

Hopefully this path with Botox along the way will get us there. It seems the lesser of two evils. She is braver than me. I had to keep from sobbing during the entire thing. Once it was over she smiled at her Daddy and the sun shone again.