The stingray (nov 19th)

The stingray !

The stingray by far lived up to my expectations and hopes. Plus more!
It's the one!

The downside being ... £2,816

Though we've raised a fabulous amount, (which I still don't have the final total in ) we are still quite a way off.

With this on mind, I wrote to wheelchair services telling them I'd found the perfect set of wheels, giving the many reasons why this one is suitable over the snappi. And askimg them why they couldnt take back the unused one they supplied us with and make a contribution towards the stingray. I also wrote to say that I'll do whatever it takes to get what Hope deserves, i'm used to fighting for her, and my next step will be to contact charities asking for financial assistance (which In turn would contact wheelchair services because this is the procedure when funds are requested for wheelchairs when they should be funded). I also said I was considering bringing the issue to the press' attention in order to raise the rest of the funds needed. Though I'd been in touch before, as had Hope's lead professional, I felt it was worth one last effort before I started kicking up a fuss!

Within a week I'd had a telephone call from the manager of wheelchair services to say this matter had been bought to his attention. He said he understood my situation, and supported my case, but that ultimately it wasn't his final decision. He said that he'd have a meeting with those who would make the decision, and also that they needed to find another child that they could issue Hope's snappi to within the next 6 months. He would let me know by the end of next week.


On Tuesday I received the good news :0) They are going to take back the snappi and give me a voucher towards the stingray. I don't know exactly how much just yet, but it will be In the region of £1000-£1500. With this though I will have to pay for Hope's wheels to have an annual service which is around £100 each time, plus I am responsible for any parts and repairs costs over it's lifetime (whereas with the snappi, wheelchair services would have serviced and maintained it free of charge). Though this is s bit of a bummer, I'm still happy to be getting some financial assistance from them. That amount, along with what we've raised .... we have enough :0) and depending on how much we get from wheelchair services, there may even be some money left over to buy other specialised pieces of equipment that would help Hope.

So my dear friends, thank you so much, from the bottom of my heart for making this possible!

Xxx

It'll probably still be a few months before we actually get the stingray mind... Red tape and hoops to be jumped through first, but I'm not in a hurry now I know It's happening soonish

What a week (nov 1st)

What a week!

A while back, Hope's physiotherapist told me she was concerned about Hope's neck, and her difficulty in achieving a 'chin tuck', so this, along with mine and her concerns over her hips, and her continuing 'specialness' with her twisty ankles, prompted her to refer Hope back to the orthopaedic consultant.

Fortunately, for my sanity, it wasn't until the morning of the appointment, that I realised where the appointment was. The Brunel treatment centre. I googled it, merely to find directions, so imagine my horror, when this is what I discovered :

The Brunel Treatment Centre is a 128 bed state-of-the-art facility attached to the Great Western Hospital. It has been specifically designed to treat patients who need elective (planned) surgery and where patients are offered a pre-assessment health check to ensure they are fit and informed for that surgery.
So that panicked me to say the least.
Upon arrival, We were sent for lots of X-rays of various bits from all angles.
Then we met with the orthopaedic surgeons, who thankfully agreed that it's worth perseveringly with the splints in regard to her twisty feet and ankles, and leAving surgery as a last resort. Phew!!! They also remarked of her spine, that it appeared straight - at present, at least. This is great because in the past she'd been diagnosed with scoliosis - a curvature.
Her hips were also found to be fine, which is a relief, because surgery and spiker cast would be the treatment.

However, on our way in to
Meet with the ortho surgeons , Ravi, Hope's main consultant, spotted her, he followed us in, asking what was wrong with Hope, saying that she didn't look well, and asking me lots of questions. He apologised for worrying me, told me not to panic, then arranged for us to go to the childrens' unit for tests after this appointment.

We did, but Ravi wasn't about, and there wasn't anybody available to do the tests he requested, so we arranged to go back on Friday. Despite Ravi telling me not to, I obviously did worry. So I rang Hope's disability nurse, who works closely with Ravi, and she arranged for us to be fitted into a clinic with him the next day.

Ravi gave her a thorough examination, and found her in fairly good health apart from the constipation/fissures - poor mite. But he felt she wasn't as she was last time he saw her a few weeks ago. But I explained to him, this is how it is with Hope. Last time he saw her, she was 100% and on top form, but she's not always , and mainly, we don't know why.
He wants to see her again next month

We had to go back to the childrens' unit on Friday. Fortunately we saw a competent doctor who took blood from Hope as well as can be expected.
We had to wait for the blood gases results. The doctor came back with them and said they seemed ok, but her lactate levels were a bit elevated. They were 3.45 (should be less than 2), but Hope's usually run around 4-5. This equates to lactic acidosis, and causes damage to organs and is literally poisoning her blood. So being that low, makes me very happy. Though I'm slightly puzzled as to why they are that low, and wish I knew what caused it, and how to keep that low, or even bring it down more.