Grace for Rett » Grace's Life with Rett Syndrome

Checklists (a Florida update)

Well, guys…here we are. IN FLORIDA! We’ve been here for 2 months and haven’t updated Grace’s fans. Yea, so…second time doing a transatlantic move. It’s -no joke- the most stressful thing we’ve ever done. And we’ve done it twice now.

We had this huge check-list when we got here and most things are done. Jobs, health insurance, kids in school. We’re still paying for our house and bills in the UK which isn’t fun. Grace still isn’t in school, we’re still living with mom and don’t have a car for Grace.

BUT…we wake up every morning hot and sweaty in paradise so we’re very happy and thankful. To be honest, when we’re basking in the sun, or running for cover in a lightening storm, there are very few things I miss about England.

One thing we really do miss is Grace’s wheelchair vehicle and the freedom that it gave us. We were pretty lucky to have that and are really feeling the weight of not having one here. Grace hasn’t been out of the house in 10 days. We can’t get her anywhere without booking the public bus which has been pretty hit or miss (we were stranded on the highway once for 2 hours because a man riding the bus fell out of his wheelchair!) We live in a darling little town to walk her around however it’s around 90* so she’s quite miserable in the heat. But we know this car she needs will happen someday, somehow.

In fact, we’ve decided to do a GoFundMe to see what we can do about getting Grace access to transportation. It was really hard to choose to do this. I (Elizabeth) personally feel that this is our kid…we just so happen to have a very expensive child…and why should anyone else have to pay for that? But watching her sit inside day after day, missing out on family activities…with no finances in sight to solve the problem…we just have to reach out and see what happens. It’s for Grace, after all, and many people love her. This we know!

PS If you’re an individual or business who would like to make a tax deductible donation you can donate through Gracie Smile (a 501c3) by sending checks to PO Box 770413 Winter Garden, Florida 34787. Just make a note that this is for Grace Halford.

Captain Obvious and Dr. Christmas Jumper // How Queen Alexandra Hospital Failed a Very Sick Little Girl

Note: this post has taken me 6 months to publish. It’s not pretty. A disclaimer about the names I will mention. Dr. Martul I noted his name myself. Dr. Peter Ellis was a name given to me by looking into her records. If that is inaccurate, it will have been a mistake of the hospital. Which, as you’ll see below, wouldn’t be so surprising. Two names I was unable to procure and I will give them nicknames. But the hospital will know who they are and that’s the most important thing.

I firmly believe that one of the greatest contributions I can make in Rett world is to empower other parents to be professional-level advocates for their kids. To tell you stories of learning things the hard way. To tell you how I got Grace her DLA even though she was rejected 3 times. How I got the education system to pull their finger out and give her the eye gaze she was entitled to. And today, I will tell you how I failed to force the hospital to find her broken legs.

I want you to know that I cancelled our lawsuit just so I could tell you this. Because I was told I couldn’t speak openly until that was over and this is far too long to be sitting on the information I have. Far too long to be silent and not be able to tell you what I should have done. Too long to wait to say to you:

Do not fear being too forceful if you feel your child isn’t given the care they deserve.

I believe that change will only come if people are educated. If I simply sue, it will help me vent my anger at the hospital, yes, but what won’t likely happen is that the Drs I name below will not hear me tell them how they failed my daughter. They won’t hear me say: non verbal children need to be taken seriously. They won’t get the message that they shouldn’t let their guard down because it’s Christmas. They won’t learn that people who don’t walk are at a risk of osteoporosis (which I thought was common knowledge but I’m happy to educate them). And, mostly, they won’t get a chance to give us the apology we deserve.

I will name names. And I will call certain doctors to account for their actions. Hold on folks it might be a bumpy ride.

The crux of all of this is that Grace broke her legs a couple days before Christmas. And I believe that Christmas spirit, hospital staff jollies and a complete disregard for the severity of Grace’s situation caused her to be in excruciating pain for 5 days. So much pain that her body was shutting down.

It’s been said that breaking one’s femur (the longest, thickest bone in the body) is “more painful than childbirth”.

So imagine that happens to you on both legs. And you can’t talk. And it remains for a whole week and on top of it all, your parents think you just have soft tissue damage (I have that in writing from the hospital) and so they keep trying to exercise your legs, get you dressed, move you around like it’s no biggie.

She did what any body under such strain would do…she shut down. Grace checked out of reality for 6 whole days. She slept about 23 hours a day. She shook. Moaned. Sweated. Ground her teeth. Curled up like she was bracing herself constantly. We thought she had the virus which had been going around so we gave her simple pain relief and monitored her temperature. Bloodwork showed that she didn’t have markers for infection and so we can only conclude that this was her body responding to excruciating pain.

So now that I’ve painted the picture, here’s what happened:

  • On the 22nd, her legs broke during a powerful seizure. We didn’t realise this until the 23rd.
  • On the 23rd, she was ambulanced to Queen Alexandra hospital in Cosham.
  • She was the only kid in the E.D. (emergency department)
  • She was seen by a Dr. _______ (we’ll call him Dr. Captain Obvious). I told him I was concerned about her femurs, hips and knees. In the letter at the top of this post you will see that “mom was concerned about her knees but we didn’t examine them.” Smoking gun. I’ve since been told by her bone endocrinologist that, yes, that spot at the knee is the most common place to break your femur. So it wasn’t rocket science, really. It should have been found.
  • While we were seen by Dr. Captain Obvious, a more senior Dr. (in a sweater, not a uniform…so we’ll call him Dr. Christmas Jumper) was within sight but he never came to examine Grace. Instead, he jollied with nurses, talked openly about co workers and patients (by name I might add) and they all were enjoying the Christmas spirit and empty E.D. while Grace was experiencing the worst pain a person can experience.
  • Dr. Captain Obvious ordered some x-rays, but not of the knees. Hell if I can understand why, considering that her discharge letter admits that I asked them to.
  • Dr. Captain Obvious said it just seemed “too unlikely that she would have broken both legs” and that she was probably just not bending her legs because she pulled a muscle. So she was diagnosed with ‘soft tissue damage’ and sent home.
  • Here is where I failed. My gut told me she had broken her femurs because I’d seen it so many times before in other rett girls. And I knew that this was the age when it often happens for the first time. But I let my guard down, I gave in to the luxury of just trusting the hospital and convinced myself I was a crazy mom going overboard.

So we took her home, suffering, and started trying to stretch and exercise her pulled muscle. I massaged her legs, further displacing the bones, while she screamed and shook and looked me dead in the eye begging me not to touch her anymore.

On the 28th:

  • I took her back to the hospital where we met a Dr. Peter Ellis. (the only Dr. not on my shit list). He was on it like a rash. He did was needed to be done and in quick order. He was kind, caring, cautious and uber attentive and he delivered the news I was dreading: she broke both femurs just above the knee. He said, “don’t give her another feed. She may need surgery soon.”
  • On that same day, we encountered an orthopaedic registrar, Dr. Luis Martul, who told us that teams at Southampton General Hospital and Queen Alexandra Hospital were in talks about which would be the best hospital for Grace. He claimed that “Southampton are better equipped to care for Grace” so she may be transferred there.
  • Grace was put on morphine and given temporary casts while still in the E.R.
  • Dr. Martul eventually delivered the news that because “we didn’t catch it sooner”, Grace couldn’t have the surgery required without needing to drill into her bones. Too much healing had already taken place. It was at this point that I schooled this Dr. on exactly why it “hadn’t been caught” and that this was 100% down to hospital neglect. He admitted fault and quickly apologised (which according to our attorney is NHS policy).
  • In the meantime, they called social services and an emergency social worker flew in and took the whole department to task. She happened to remember that we called to let social services know what happened on the 23rd. She claimed that social services would be opening an investigation for neglect of care against the hospital and not us. I don’t know what happened with that as of now.
  • While in the presence of this social worker, Dr. Martul quite ungraciously attempted to pin this disaster on me when he asked, “remind me…what did Grace hit when she fell and broke her legs?” I had told him 3 times over by this point that she broke her legs during a seizure. When he left, the social worker told me exactly why he was so crass and that he was perhaps attempting to trip me up and make me say I did it.
  • In addition, Dr. Martul claimed that “because she doesn’t walk”, surgery was pointless. Straight legs are a luxury afforded to kids who can walk, I guess. My bad.

Grace was admitted to the Shipwreck Ward (great name, right?) and there she stayed for 10 days getting a variety of different casts and a chest infection. At this point, I have to say that the nurses were incredible. Apart from the time they tried giving Grace a nurse with a cold (I kicked her out), the care she got was incredible.

Wheelchair services…we have still not heard from them. They never adapted her wheelchair. We had to hack it in order to take her home.

There was a point during the morning rounds where I asked the orthopedic surgeon guy (who in the UK are called “mister” and not “doctor”) Mr. Richards, “why didn’t Grace get surgery for this?” He said it was because QA Hospital wasn’t equipped with the high dependency unit she would need post-opp (which Southampton General did have). So I asked, “Ok…so why didn’t she go to Southampton?” Answer: “Because she didn’t have surgery.” Again: “Ok and why didn’t she have surgery?” Answer: “Because she didn’t go to Southampton.” Now, I’m no surgeon. But…what?! I think we call this circular reasoning, yes?

The fact is, Grace didn’t get the care she required…she didn’t get surgery and she was in horrific, excruciating pain because, as Dr. Martul and Dr. Peter Ellis both admitted, her broken legs weren’t found soon enough. Because on the 23rd December, while there were no other children in the E.D.,Dr. Captain Obvious didn’t listen to me, Dr. Christmas Jumper was having Christmas jollies with the nurses and I let my guard down and trusted them.

What are the takeaways from this?

  • Non verbal children are discriminated against
  • Non ambulant children are discriminated against
  • People who don’t walk are at a risk of osteoporosis. And #sorrynotsorry but if you’re a Dr and you don’t know that, then you, my friend, are an imbecile.
  • Doctors can be dumbasses and need to be told what to do by “expert parents” who know more about Rett syndrome than they ever will.
  • Do NOT give up the fight. Do not worry about being a bitch, rude, a difficult parent, a pushy person. Your assertiveness may be misinterpreted as aggression and you just need to be ok with that. Their feelings do not matter. Your daughter does. A sore ego will heal. But I doubt that Grace will ever forget her 5 days in hell.

Grace is now all healed up but our family has been forever changed by this experience. We have learned new ways to handle her, care for her bones and now we embark on a lifetime of being on high alert, uber vigilant, overprotective, to avoid this ever happening again. And Heaven help the next doctors who don’t listen to me.

[…] Christmas for Grace […]

Retarded

This post has a video. If you’re reading in your inbox, click here.


4 years ago I wrote a post called Retard. Read that one first, I guess.

I’m in all these special needs groups on Facebook. There’s rarely an absence of at least one person losing their minds because they heard/saw someone say “retard”. I recently saw a woman posting a huge load of screenshots of a public showdown she had with some guy on Facebook (a place known for facilitating the intellectual awakening of ignorant folk) and -man- did she tear him a new hole.

And it leads me to ask…

People, what is going on?!?

Exactly WHEN did we start being cool with policing everyone and waging holy war on anyone and everyone who doesn’t agree with us, behave according to our beliefs, adhere to our worldview, et cetera? When did it start being not ok to be offended once in a while?

Listen, retard isn’t a nice word to lots of folks. I imagine the ones using it like it just fine. But if one is not a fan, I’m guessing that one’s distain has something to do with the Golden Rule? That we shouldn’t use that word because we need to show care and empathy for others? So in what universe do we say “you’re breaking the golden rule and making me feel sad, you asshole! Stop using mean words, you contemptible dickwad! Be nice – like me!”

Model the behaviour you’d like to see. It’s a basic rule and even works on toddlers (but not husbands)

We simply cannot police others and force them to behave as we want them to. Not even our spouses. Anyone who’s been through couples therapy will know that trying to control another person is an illness. And yes, I do see irony in the fact that this post is about me policing people who are angry about the word retard. But to take on every person who uses a word you don’t like is to live your life in a constant state of anger and, frankly, I like to channel that emotional vigour into taking care of my special needs kid. And writing witty blog posts. If I have time on my hands, you’ll find me taking a nap. Not fighting online with an ignoramus I don’t even know.

The only person you can control is yourself.

If you hear someone say something you don’t like, maybe get some thick skin, grow up, (wo)man up. There are 7 billion people in the world. Some people don’t have the emotional intelligence to know that “retard” or “that’s so gay” aren’t phrases loved by 100% of people. And you know, lots of people use slurs on purpose because they know that it offends. They are trying to offend. Are you gonna give them what they want?

Vegan formula recipe for tube feeds

CORRECTIONS :: in the video I said there is no calcium and actually each bottle has 75% daily recommended calcium.

UPDATES :: This thickened up too much in the fridge so the next morning, the pump wouldn’t handle it. We left it to get to room temp and tried again hours later and still too thick. So now we’ve cracked the case: leave out room temp and leave room for water. Thin down just before feeding and works fine in pump this way.

Ok guys. I’ve had a brain storm. Today I posted the first video about switching Grace to real food. I’ve been sad, frustrated, confused and depressed about this whole thing. Like it’s another mountain I don’t have the energy for. Feeling like we’ll never find a way to make it work with our busy lives. And tonight it hit me: why are we trying to switch Grace to 100% blended food i.e. liquidising a PB&J sandwich or feeding her a liquid version of everything we’re eating? How about just starting with making a replacement formula which we can get through her feeding pump and then start adding in more bulky foods here and there? Duh!

In the beginning of all this, the goal was to get away from pumping her with a litre per day of the ready-made formula which includes things like maltodextrin which is the SECOND INGREDIENT after water and high on the glycemic index which causes your blood sugar to spike unhealthily fast. But I guess I was thinking that the only alternative to the formula was to find a way to get cooked food into her until this brainstorm that actually, I could just replace the formula as a first step.

Recipe

  • 1 carton organic, unsweetened soy milk (I’d recommend almond or hemp but I had a bottle of soy in the fridge)
  • 100g peanut butter (4 tbsp)
  • 1 banana
  • 100g raw cashews

Cost (versus £9.78 per bottle of the pre made formula which is £586 per month if bought privately. The NHS pays £4.88)

  • Total cost = £4.44
  • Per 500ml bottle = £1.48
  • Per 250ml feed = 0.74 pence
  • Cost per month = £88

Enhancement ideas

  • Liquid vitamins
  • Fish oil
  • Vit C powder during cold season
  • Green/superfood powders

Nutritional Values per 500ml bottle.

The first number is my recipe and the second number is the pre-mixed formula. My recipe is higher fat because of the nuts but also higher protein. It’s higher sugar, but it’s lower glycemic index sugars and perhaps also the sugar in the peanut butter which is a more processed brand than I’d like to be using.

  • Calories 500/500
  • Fat 37g/19g
  • Saturated 6g/2g
  • Protein 24g/20g
  • Fibre 5g/0g
  • Sugar 9g/5g
  • Carbs 22g/61g
  • Calcium (my recipe delivers 75% of daily recommended calcium per bottle so grace gets 150%)

Pros/Cons

  • Needs to be made on a daily or bi-daily basis
  • You need a high powered blender (like a Vitamix) if you’re going to do the cashews and this is about £500 OR you can soak them overnight and use a regular blender.
  • Needs to be kept in the fridge but I imagine sending her bottle to school isn’t a huge deal cuz it’s just a few hours
  • Here in the UK, the feed is delivered free and this will cost £88 per month. BUT it’s only free to us. It costs the taxpayers about £3,500 per year to feed Grace and I don’t see why that’s necessary if we can do this.

Ditching formula & going back to real food

Note: this post has video in it. If you’re viewing in your inbox, click here.

Grace got her feeding tube 5 years ago yesterday. It was the best decision ever. Not only can we get medications into her without fighting, we can keep her hydrated and fed when she isn’t feeling well. And of course, she hasn’t had aspiration pneumonia since we did it.

With the tube comes a monthly supply of liquid formula delivered to our door (thank you NHS!) and for the last 5 years we’ve been using nothing but that. I mean….it’s so eeeeeeasy. So why not? But recently I started feeling like I was just being lazy. I work so hard feeding the rest of my family but Grace just gets the easy stuff. So anyway, my first attempt can be seen below. It’s a journey we’re on. Weekdays are hardest while she’s at school. I don’t know if we’ll ever be 100% off the formula, but if we can cut it back by half I’ll be happy.

[…] Ditching formula & going back to real food […]

F a c e b o o k