Saturday, 11 July 2015

A Day Out with a Zebra

Last week we were invited out to test some bouncy castles and afterwards spend the day at Hatton Adventure World.

To most people we were just a regular family enjoying a day out, which is I guess, how most zebra families are viewed. I wanted to write something to show just what that day really was like for us.

We started out almost on time which is good because it meant we had no 'accidents' or 'incidents' to delay our morning. By this I mean that Lucy did not soil herself or have a meltdown, sometimes we experience at least one of these in the morning.

I have to consider what may happen during the day out, so much like preparing for a baby, I prepare a bag for Lucy. I have spare clothes in case of accidents, baby wipes, extra drinks and painkillers. 

When we arrived Lucy was a little fatigued from the journey but she soon perked up and was rushing along with the other children across the field to the bouncy castles. She was playing and having fun straight away, being the eldest she had no inhibitions and no shyness. At one point she was asked to help a younger child climb up the bouncy castle to the slide. She didn't register this question. I asked her sister to help instead. This is her autism kicking in. It's not that she doesn't understand, it's just that she was playing and not registering that her help was needed. To get her to help I would have had to remove her from play, make sure I had her attention and then explained what help was needed. This is time consuming, it may frustrate her being stopped from playing and as she is not that physically fit helping another child might not work anyway. It was just easier to ask her sister.

At first Lucy was able to climb up to the slide herself, most of the other children where managing fine and it wasn't that high. As she became tired her body no longer had the strength to get her up and she began struggling. Then she became frustrated with herself. I had to take her off the bouncy castle to rest and recuperate. We did this by sitting on some chairs that had been provided. She leant against me and at one point was laying on my lap. She felt quite calm which was good because I knew she was trying to curb her anger and frustration at not being like the other children. She tried again but as it was hot she didn't really get enough energy back. Her frustration increased and she nearly went into meltdown but a cuddle from me managed to calm her and again I had to remove her from the bouncy castle. I'm glad she didn't go into full meltdown. She was the eldest and biggest child there and it may have been a little scary for the other children to see her like that. Luckily we were in a place where I (or her Dad) were able to take her off, away from everyone else. That's something we have to think about and why we tend to avoid enclosed places like soft play areas.

When the bouncy castle play was over, which came at just the right time for Lucy but the other children probably would have played for longer, we went for some food. Lucy perked up again and was able to walk over to the marquee where the buffet was laid out. She complained that she was hot and thirsty but the thought of sustenance kept her going.

Once in the marquee she was happily tucking into the food, thankfully there was plenty of things that she liked. She is quite a fussy eater but is quite happy with buffet type food and finger foods. After re-fuelling she joined the other children in colouring in activities.

Then we went to enjoy the rest of Hatton. We started with the animals, Lucy loves animals so she's always happy here. Then we took them to play on the mini tractors. She is a little big for this type of play but she is also a little immature so she really wanted to join in. Luckily, some of the tractors where quite big and she managed to find one that she actually could fit on.  The three of them played together for a while while Dad and I took a rest on a bench. We then went to play in the sand with the diggers. They all loved this so much and could have stayed here all day.

We went panning for gold and played in the park, taking plenty of rests in between activities. I was surprised at Lucy's stamina, she must have been enjoying herself to have lasted this long. She was showing signs of waning though even though the other two were still going strong. They wanted to go and play on the fairground. I had two reservations about this, one was that I thought Lucy had had enough for one day and two, fairground rides can be a strain on her neck. There are only a few rides at Hatton and they are aimed at younger children, but they are still bumpy and the tea cups spin around. I know I can't wrap Lucy in cotton wool, but I do try to limit her activity for her own safety. She was too tired to go to the rides anyway, she didn't want to. So I took the other two while Lucy had a stroll around the bird cages with her Dad. Everyone was happy.

It was late afternoon now and we were all feeling tired so we decided to make our way home. First we had to make our way through the lovely shopping area. Usually we would take the time to browse but we decided on a quick pop into just a couple of the shops.

There was some grumbling on the way home and we had to stop for cold drinks but overall I believe we had a successful day out.

Painkillers were administered at bedtime and it didn't take long for her to fall asleep. Some nights it can take up to two hours, so she must have been worn out. I had to go in and massage her knees around midnight but other than that it was a peaceful night and she didn't wake until just after 7am.

Saturday, 4 July 2015

Rheumatologist and Physio Therapist

We were referred to several departments after Lucy's diagnosis of Elhers Danlos Syndrome to see what she needs and what help she can be given.

The first appointment through was for the physio therapist which was for  Friday. Then on Tuesday we received a phone call asking us if we could make an appointment with the rheumatologist on Thursday.

I'm glad the appointments worked out the way they did because visiting the rheumatologist first was a the best step.

The Doctor we saw was really nice. She spent about 15 minutes talking through Lucy's history asking me lots of questions. I'd written everything down but I didn't need to consult my paper because it's all etched in my memory. There is always a chance of the brain fog descending though, so best to have some guidelines. Then she asked if I had questions and mostly I just wanted to know if she agreed with the paediatricians diagnosis and if there was anything that could be done for Lucy.

She completed a  thorough examination of Lucy before answering my questions. Lucy scores 6/9 on the beighton scale for hypermobility. However, she does have other joints that are really hypermobile that the scale doesn't take into consideration. (As a point of interest, I score 7/9) We both score two major on the brighton criteria.

She pointed out that Lucy had a mis-aligned ankle on her left side and asked me if she'd had an accident. We are not aware of her hurting her ankle. She thinks it can be corrected with shoe inserts and has recommended that Lucy sees a podiatrist.

At the end of the diagnosis she went through her findings with the information given by the Elhers Danlos Syndrome Organisation and agreed that Lucy does have EDS hypermobility type.

She recommended Lucy seeing a physio therapist but I told her that Lucy already had an appointment for the next day. She is also referring Lucy to a gastro specialist for her bowel problems.

Overall the visit felt positive. It felt like a step in the right direction and that Lucy was going to receive some help.

The next day we saw the physio therapist and the experience was a little different.

Lucy was not feeling her best and complained every time she was touched. Maybe all the stretching and poking the day before had left her feeling sore? The physio was doing practically the same things but I have never heard Lucy say ouch so often. She never normally complains, even when she was at her worst with her neck she would only admit to pain if we asked her.

I had told the physio that Lucy had been given a diagnosis of EDS but she didn't seem impressed. She said a lot of Lucy's pain could be put down to growing pains and had she grown much in the last few months....she's 9 years old, she's always growing! She's been growing since she was a baby so I guess all the pain she has had over the past 9 years are growing pains then?

She saw that I wasn't very happy with her comment, event though I didn't say anything, so she tried to make it sound as though she was only blaming some of the pain on growing..the pain in her ankles and knees. The rest was EDS, if that's what she had been diagnosed with. I had the feeling she did not believe that EDS existed.

She then went on to say that Lucy would need help to recover from her ankle injury...I hadn't said anything about her ankle...there has been no injury, surely I would know? I didn't argue with her, if Lucy needs help for her ankle she can have it. It's just a mystery as to why she has a bad ankle.

Finally she said that Lucy would be referred to a rheumatology physio therapist. Then she left the room to fetch some exercises for Lucy. When she came back she said she'd made the referral to a community physio therapist who would come to see Lucy at home.

I must say I found the whole experience with the physio therapist like a step backwards. I'm so glad we didn't see her first I think I may have been more upset.

In the meantime we are taking one day at a time.

A Day in the Life

 I've decided that I want to write things down for a couple of reasons. One is that I find it helpful to put it down to talk about it in...