Grace for Rett » Grace's Life with Rett Syndrome

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 […]

Epilepsy Mumbojumbo: Refractory or Intractable Epilepsy

I’m so absolutely wiped today so this post won’t be full of the witty smartassy brilliance I know you love (eye roll) I’m just popping by to share some new words I learned today (tadaa!)

Grace had her neurology appointment today and the Dr said something to the effect of: “…Grace’s intractable epilepsy…”

“Her…what?”

So here’s the lowdown: I guess 70% of epileptics can be controlled and made to be “seizure free”. When I asked what was the threshold for being seizure free, she said it’s 2 years without a seizure. It never crossed my mind that this was even a goal – that there are people with epilepsy who can achieve going for years without a fit. We can hardly go 2 weeks (or sometimes days) let alone 2 years. So Grace is in the 30% of epileptics with “intractable” or “refractory” epilepsy meaning it can’t be controlled.

She was referred to the clinic for information on starting her on a ketogenic diet. Cannabis could also be an option, apparently…which I didn’t know was even possible here in the UK.

So there you have it. And now I must crash…ZZZZZZZ

Deck the halls with broken femurs

“I have little bones” -Dolly Parton

From our family to yours, a few ideas for holiday activities:

  • Decorate cookies
  • Ice skating
  • Caroling
  • Family game nights
  • Watch your daughter suffer the most excruciating pain possible for a week before finding out she’s broken both femurs

Ya you heard that right. Grace broke both femurs during a seizure on the 22nd and because she can’t talk, we didn’t figure it out until the 28th.

I’m home after 3 days in the hospital with Grace and my eyes burn with exhaustion so I’ll give you the quick version:

On the 22nd, during a nappy change, Grace was hit suddenly with a “tonic clonic” seizure which her dad didn’t see coming. Her legs shot up in the air and (we now know) while the legs went one direction, the hamstrings pulled another and the strength of the muscle contractions snapped both of her femurs in the same place just above the knee. All the way through the bone.

Long story short, she’s in two very heavy casts for what could be as long as 8 weeks. Her legs are sticking straight out and so until we can modify her wheelchair and find the best place for her recovery, she’s on her back in a hospital bed. Our little English house, although beautiful and equipped for her normal life, isn’t equipped for the level of care she will need through this recovery. I don’t think our wheelchair accessible van will fit her in this situation so wherever she ends up next, she will need to be ambulanced there.

This new challenge has brought to light the fact that she has osteoporosis which is to be expected in a non-ambulant person like Grace and often, it’s the first big break which brings that diagnosis to light. So this will forever change how Grace is manually handled and cared for. No more clothes which are difficult to get on. No more changing her nappies/diapers like we have always done. Right now, it takes 4 people to change her and when she is out of her casts, it will still require two.

You may remember last December she experience a tiny break in her hip and a few days later, got her first bedsores (more on that here). Well those sores are still being managed a year later and so in addition to all this, we’re keeping on top of keeping her heels from touching the bed.

So with all of the specifics out of the way, some moanings from me…

It’s been said (and confirmed by Google) that breaking one’s femur (the longest, thickest bone in the body) is “more painful than childbirth”. I’ve heard men say that about all manner of testical related phenomena but I’ve read many’a woman verify that they have done both and, indeed, the “femoral fracture” was far 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 (for reasons I can’t explain at this time but some day I may get to tell you all about it. It’s a very sad story) and on top of it all, your parents think you just have soft tissue damage and so they keep trying to exercise your legs, get you dressed, move you around like it’s no biggie.

This scenario keeps playing in my mind and my stomach drops, I start sweating, get near to vomiting at the pain I feel when I imagine the pain my baby girl was in all that time.

So over Christmas, 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. Fun fact: did you know the word excruciate was invented just to describe the torment and pain of death by crucifixion? I think it’s an appropriate word in this case.

She learned that week that anyone coming near her meant pain and so when people walk in the hospital room she begins to shake with fear that they will cause her pain. She will slowly need to learn that the worst is over and that the painful part is done. She has cracked half of a smile today for the first time, but anyone who knows Grace knows how out of character she is right now and sometimes I fear that this will have forever changed her.

The boys seem to be taking this like just another day in Rettland, but Steven & I are utterly reeling. I just don’t know how much one couple are supposed to be able to survive. But even moreso, this has been torment for our little darling girl and nothing -NOTHING- is worse than watching your child suffer while you are helpless to fix it.

Does it get easier?

“Does it get easier?”

“No. You just get better at it.” -The Good Wife

I spoke with a new Rett mum the other day. When Grace was first diagnosed, no one told me the things I needed to know. I was instantly sucked in by the charities and was only promised a cure, hit up for money, put to work, told that family support was useless and the only thing to focus on was research for a cure. (if that’s bitterness you sense in my words, you would be right…I’m not impressed that this goes on in the lives of newly grieving parents). This stunted my grief and many parents I know say the same. The process of grief which could have taken a few years has taken us twice as long.

Instead, I told this mom things I wish I’d been told:

  • That social services won’t tell her she’s entitled to direct payments to pay for help taking care of her daughter, but she can make it happen (and I told her how)
  • Giving her meds to achieve things many parents can achieve without them doesn’t make you a failure. That just because most kids can be soothed to sleep by their mummies singing and ours need tranquillisers, we are not bad parents.
  • YOU ARE NOT A FAILURE.
  • God didn’t see fit to give us special kids. There’s nothing special about us and we are not equipped with some superhuman powers. We need a team to help us raise these girls and there is NOTHING wrong with making use of all of the financial and practical help available to you. No one is meant to have to handle things like this. This level of disability isn’t normal. It’s not doable alone and it’s not supposed to be. And it’s ok to have a tantrum once in a while.

These are things I needed someone to tell me. The practical help I needed. I learned most of this fighting the system and learning the hard way. Grace was denied disability living allowance THREE TIMES before they realised that Rett syndrome is, indeed, rather debilitating.

When I tell people Grace has Rett they say “the swearing thing?” To that, I say, “Not tourettes. Rett. Rett makes the parents swear.” Rett syndrome is bullshit. No, you’re not imaging it…this wasn’t supposed to happen to you. It’s ok to feel sorry for yourself. Rett syndrome doesn’t get easier. You just get better at it. And it’s a painful realisation, but one that can be the start of healing. Or, at least…fortifying.

If you’re the mom who gave birth to that kiddo, remember how you thought somewhere in the middle of those contractions that you were gonna die. That there is no way a whole human being can come out of you but what did you do? Steel yourself. Breathe. Push. Claw someone’s hand. Accept help (drugs!) and you did it. The superhuman part is over. Now, we just have to raise ’em.

 

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