Matilda B

26 November 2017

MATILDA HAS A LIFE THREATENING ALLERGY TO LATEX. Please don’t send items containing latex to Matilda or her siblings. Matilda is also unable to eat but is happy for her siblings to receive sweets.

Matilda has many life threatening/life limiting conditions which have kept her in and out of hospital all her life.

She has spent months upon months at a time in hospital and despite being away from her siblings and Daddy for long periods, she never complains and always has the biggest smile on her face.

Matilda has intestinal failure; no swallow so cannot eat or drink and therefore needs TPN to keep her alive and well. Because Matilda has ketotic hypoglycaemia she cannot control her blood sugars and they drop dangerously low even after a few minutes of stopping her TPN, so she has to have IV glucose running 24/7 too.

Matilda is completely paralysed from the chest down, so she is a full-time wheelchair user.

Matilda sees herself as any other little girl and although she knows her body doesn’t work as it should or like most other children’s she has a real zest for life and never lets her disabilities stop her from achieving what she wants to do.

Matilda attends our local children’s hospice which she loves to go to as there is so much to do there and she gets spoilt rotten.

Matilda cannot go to school due to medical reasons and her being unpredictable and unstable medically so she is home educated by Mummy.

Sadly in August Matilda’s sister Daisy passed away so its been a very tough year.

Update 14th April 2019

Sorry it’s been a while since our last update on Matilda, things have been pretty hectic and stressful for us all the last 6 months.

As some of you may know Matilda was due to have spinal surgery last December, but I unfortunately broke my hand badly and had to have surgery myself the day before we were due to travel to Oxford for the surgery, so we had to cancel at the last minute.

There has since been many meetings with the professionals and various teams who will be involved in her care in Oxford and as a result of these meeting major concerns were raised about Matilda’s underlying medical conditions and how they make the surgery even more risky.

The proposed surgery will be carried out over two days under the same general anaesthetic – on day one the neurosurgeon is to operate on Matilda’s brain to put a pressure monitor inside her brain and the plastic surgeons will open her back. The neurosurgeons will then spend the rest of the day detethering her spinal cord and she will then be taken to ICU and kept under the same anaesthetic overnight. Day 2 will be the spinal surgeon removing 4 abnormal vertebrae then using rods, screws and plates they will build her collapsed spine back up and put rods in.

This will be to give Matilda the space she needs from her waist to pelvis as currently her spine is collapsed and all her organs are crushed and not working properly.

The main concern is her lungs are only 50% the size they should be because they currently have no room to grow. If they do not have room soon they will reach a point where they stop growing and they will be unable to sustain her oxygenation as she gets older.

We were told if we don’t go for the surgery the chance of loosing her is high, if we do have the surgery there is also a risk we could loose her – but as this is so unique they cannot give us any statistics.

It’s more complicated because Matilda’s organs and blood vessels are not where they should be. They are squashed, and her spinal cord is very close to the surface of her back, stuck in scar tissue. The ICU team are concerned because she has clotting problems and because she has no reserve – she cannot control her blood sugars and the risk of a severe stress response during surgery could put her in real danger.

Having said all this we feel like we are damned if we do and damned if we don’t and if this surgery is successful it will be life changing for Matilda and will change her life for the better and give her an excellent prognosis and life expectancy,

We had a big meeting with the neurosurgeons, plastics, spinal surgeons, anaesthetists and ICU consultants last week and they will now have another meeting and decide if with all the risks highlighted they meet the ethical guidelines for doing the surgery.

Aside from all this, Matilda has been very well the last few months, we have had a few quick hospital admissions for Influenza A, temperatures or infusions but this has definitely been her best winter.

Layla and Matilda have just started Brownies which is fantastic and they love it. I have to stay with Matilda but she isn’t bothered and is just so happy to be with the Brownies having lots of fun.

Little brother Zachary, on the other hand, has had his first experience of hospitals, doctors and illness as 2 months ago he had a bad seizure out of the blue one day that scared us all to death. He ended up in hospital for the weekend and has since had another one at home and one at school.

This is a great concern for us as he is fit and well and never ill. We have seen a neurologist who has studied the videos I took of the episodes and read the hospital notes and she thinks he has a form of epilepsy called Panayiotopoulos Syndrome ( it’s so much easier to spell that pronounce, ha ha) 

He has had an EEG and was put to sleep last week for an MRI scan. He has been so brave and just taken it all in his stride. We just now need to wait for the reports.

Oliver is doing well at school. He has also had a few weeks of being unsettled (Oliver has Autism), he isn’t sleeping very well and seems to have developed some anxiety issues which are completely new and we do not know what’s triggered it. 

I just want to say a massive thank you to everyone who has sent the kids letters, postcards, pictures, gifts and parcels, every one is greatly received and the kids love to receive post from Post Pals.

Update 9th September 2018

I can believe we have been a member of Post Pals for almost 9 months now! We would like to thank everyone who has sent Matilda and her siblings cards, letters, postcards, gifts and big parcels. You have all made my children very happy and put massive smiles on their faces. So much so that they now wait daily for the postman to come down the drive to eagerly see if he has any mail for anyone!

It’s been a very touch year for us as we have had to experience many firsts without our beloved Daisy….Christmas, New Year, Easter, her 21st birthday and the anniversary on her death in August. Again I would like to thank Post Pals for the love and support we have had and some beautiful messages and cards sent to us. Matilda has been relatively well this year, we have still had a few hospital admissions, mainly for operations to put in new central lines or tubes but nothing prolonged or serious which is really good news. We continue to go to hospital weekly for blood tests and for Vitamin K and A infusions but it’s only a few hours at a time so we can deal with this. We were invited on Post Pals trip to Chessington in April…it was amazing! We have never been before and we were pleasantly surprised how much there was to do there and what a brilliant adventure park it is, there was so much to do. It was nice to meet so many lovely families and meet Vikki and Ally, more friendships formed. The kids …and us had a great time, the kids loved the themed bedrooms and all the animals. Matilda’s highlight was the Giraffe feeding and the ice cream competition.

As summer comes to a close the kids are back at school … little Zachary started reception class and Matilda continues her home education with me. One of our biggest achievements to date happened this week…..Matilda won a Wellchild Inspirational child award. We went to the awards evening and met HRH the Duke and Duchess of Sussex (Prince Harry and Meghan) Matilda was all over the media and online (which she loved) and Prince Harry actually presented her award (how lucky is Matilda) I am so proud of Matilda, she goes through so much but never complains, always has a smile on her face and just takes each day as it comes.

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