Wheelchairs, Architect, tiredness!

After our lovely weekend we come back to earth with a bump. It was a lovely weekend..David and Joshua had a lovely time too despite ending the weekend with a tow out of the mud with two landrovers and a JCB tractor thingy! Maybe more about both versions of the weekend in a later blog..too tired to do more than this one tonight!

Monday was our long awaited seating clinic for the girls wheelchairs. It was a glorious sunny day,
Collecting the carer from home to head off to pick Rosie up from school I managed to take a wrong turning...no problem slghtly longer route to the main road but not a disaster....until we discovered the roadworks closing off the road and we had to back track and take the proper route. Still on time as we approached school so all is well. We collect Rosie and make reasonable progress until the inevitable slow moving lorry pulls out in front of us. 40 miles an hour is such a frustrating speed to travel...35 miles is not that far...easily doable in 3/4 of an hour....but why does all the oncoming traffic have to wait until we reach the straight bit of road? That lorry remained ahead of us to the last turning off the main road into the trading estate where wheelchair services reside. However, being a person who hates to be late anywhere I had allowed plenty of time and we still had 20 minutes before our appointment. This was probably a good thing because as we arranged ourselves in the tiny waiting room with two wheelchairs two adults and all the paraphenalia that goes with a trip out for the Hilliers, Rosie did a spectacular impersonation of a camelion..changing from reasonably pink to deffinately blue. Wobbly gait and eyes flitting this way and that...it was evident to me she was fitting however to an unaccustomed stranger she may have looked slightly odd but not obviously fitting. We sat her down and she got up trying to escape our efforts at keeeping her safe...her gait was so wobbly she could barely maintain standing and eventually the colour of her face and hands pushed me to reach for the oxygen...why oh why can I not just have an apoxic child who will sit and allow me to adminiser the oxygen that will make her feel better? Rosie knows she needs the oxygen, accepts it makes her feel better but is not keen to sit still and have a mask on her face or even to have it wafted in front of her...the first two mintues she is great...always makes me feel ahahh this will work then I suppose she feels better so then trys to get on with life...pushes it away and sruggles to escape...of course hypoxia gives one strength...Rosie does not need added strength she has enough...there ensues a battle I am determined to win...pink suits my girl far better than deep blue...we needed the best part of that 20 minutes to return her to the shade I prefer...by which time I am exhasuted and could probably make use of the oxgen...I resist and pack it away.

It was well worth the trip, there were 4 people waiting to assess the girls...the OT we knew, an OT student, the SOS rep and the Wheelchair services technician. We started with Rosie, it was a challenge! Rosie does not do co-operation! Siting on a box to get accurate measurements was not Rosie's idea of fun! Rosie sat beautifully with a wry smile eyes flitting around the room trying to judge what may be coming. The coordination of Steven picking up the tape measure and Rosie jumping off the box could not have been choreographed any better! the attempts to get Rosie sat with all joints bent to right angles left grown men ready to weep! Steven decided he was getting nowhere and Faye suggesed sitting her back in her own chair may give us more chance...i had my doubs but it was the best suggstion so far and we went with it.
Strapping her in with the pelvic strap all was well...then she spotted the tape and with a cheekey smile her legs shot out straight in front of her and she sort of arched up and to the right...maybe 15 minutes later we felt we had got the best we could and let her free! Tim fetched out the colour charts and we left rosie perusing colours whilst we discussed harnesses and straps and knee block and foot box and ramped seating and anything esle that may help to keep Rosie sitting in a reasonably good position and unable to escape whilst driving!
I was totaly staggered by the way these people listened and accepted the difficulties I kept throwing at them. A need to keep Rosie safely secured meant that totally individual ideas had to be thought up...Pencil and paper were employed to sketch ideas, each person ahd something to offer and suggesions to make and a harness that was far more dignified than what we use a present was divised...one that would hopefully b Rosie proof but easily opened in an emergency. Ideas were bandied around about keeping legs in a good position, concerns of knee torsion and Hip dislocation were taken seriously and compromise made where necesary...and do you know what?....Money and budgets were not mentioned once! Rosie chose her colours and we discussed the merits of wipeclean against washable and decided wipe clean was the better as the need for cleanability did not always coincide with availability of washing machines!

Now it was Eve's turn....disconnecting her from her feed I managed to set off a back spasm and liting from her chair was exemely painful for her...we had tears and breath holding and sobs and eventually back to smiles and relaxing. Eve was quite happy to sit on the box, she sat with knees bent and feet flat and demonstrated her own individualised problems to overcome! back is so twisted and bent now that when supported in sitting she can cease to breathe extemely well! Unfortunately she does not react at all to this and lack of oxygen for her does not give rise to excessive strength nor panic nor any kind of warning other than the blue hue that creeps over her! it was an odd way to measure a child...held from behind at the hips by the technician, held from the front by he head being pulled slightly up and very slightly forward by mum and held by various limbs by OT whilst SOS man measured! so it was not quite conventional but it worked and wih inceasingly laboured breathing we got through it! everyone else in the room was quite concerned by the breathing efforts...Eve thought it was quite funny and once I laid her down on the box and suctioned the acumulaed secretions from her mouth and nose she rewarded our eforts with a beaming smile and then a sigh and a sad Leyoy gon ome! her boyfried of the weekend had gone home and she missed him badly! I think she felt he would have been laughing his little socks off at both Rosie's antics and the amusing specatcle of her being held up by her head! I think she was probably right...shame I didnt video it with my spare set of hands really!

Eve's seating unit was going to be more complicated than Rosie's. Of courese that was aleady inevitable as she needs support rather than restraint. However her changing spine and her inceasing difficulty to maintain breathing is complicating matters. I was rather concerened that the fact Eve is awaiting a back brace could delay the wheelchair, we really do not know what difference that will make to her seating needs. I need not have worried. Apparantly they are going to make a moulded unit that will suport her in as good a positon as possible butif the brace will not allow her to sit well they will then make another back cushion to accomodate the brace! once again money, budget, difficulties etc etc were never mentioned!

seeing us start to gather our belongings they asked about what equipment we carry regulalry...Suction, Oxygen, Fed pumps etc...OK so they will also include a carrying basket under each chair! I asked about the tilt in space function and they demonstrated on the larger model they had there...it has a great amount of tilt..howver because Eve and Rosie never use any degree of prone they are going to set the seat for Rosie starting at upright. this will give her an extra 5 degrees of tilt...For Eve because she never uses total upright as her head flops and restricts that darn breathing thing..they will start her at 5 degrees tilt which is minimum she can ever cope with this will then give her an extra 10 degrees of tilt at maximum.
The push handles are adjustable height too this means that for Joshua and Christina we can make the handles an easier height for them..they also twist to enable us to help when crossing roads etc!

Then the best surprise of all!!!! How long does it take from now to delivery...can you just imagine my face when they said 21 days???? We have an appointment to go and collect on 21st April!


Todays highlight was a visit from the Architect who is dealing with our proposed adaptations. Roger is a lovely man. right from our first contact with him it has been so evident that he really cares about our fanilies needs being met. He has always made comments and suggestions about ways around difficulties, he has pointed out where we may come up against obstacles and made helpful comments about planning ad building regulations without ever making us feel that he is trying to cahnge our views. one such suggestion being about Jonathans bedroom. we want to maximise the room within Jonathan's room. we had suggested extending it 8 feet further out than it already comes...Roger thought planning department may feel that was too far...he suggested making it 4 feet, we could understand his reasoning but felt 4 feet did not leave enough space so we agreed to go for 6...this was passed!
Today roger was bringing the working drawings, ready for going to building control and then out to tender! there were a few things needing resolving...as I described before our house is in fact two houses joined together by a single story utility room...the smaller house is 180 mm lower floor level than the larger house and utility...at present Jonathan's room is lower still...the aim is to bring Jonathan's room up to the level of the utility. This will then leave a step from the lounge to the utility of 180 mm this is an obstacle to Eve if she ever gets a power chair, it is also a poblem with moving equipmnt around the house and it needs to be overcome! One thought we had was to make a ramped corridor from the door of the lounge/utility to the utility/kitchen door...in the new works these doors will be opposite one another...it would work apart from it would then leve a graduated step along the length of the ramp to the rest of the utility and Jonathan's room. eventually we decided a step lift would be the only way forward and would actually work well.
There was also hen some discussion about the route for the drains..and the tender for the lift....Ebay had aleady reslved the lift issue so it was just a measrement for the route to the drains...we have a cess pit...on a side note it needs emptying...but the route was quite simple as all the bathroom drainage will be coming from the same areas of the house!

After the discussion of the drawings we somehow managed to end up discussig grief, child death and the differen ways men and women grieve...it was an amazing half hour of mutual support and understanding and I am sure will lead on to further compasinate friend type sessions. Amazing how God can work to bring people who need each other together!

I am not sure how much of my extreme fatigue today is down to the hour we lost! I do not usually have such a difficult time getting used to that hour....in fact because the childen never adjust quickly it usually means that our sleep isimproved as they dont wake so early for a while...however I am just totally exhausted! I am using heavy duty pain relief and disease modifying drugs to try and overcome the effects of Lupus, I am now 15 months or so into a horrible falre up of this autoimmune disease. It has totally iped me out, left me in signiicant pain and anxiety. Unfortunately stress is a big trigger for Lupus and we have that in abudance right now. I am so glad that my God is able to supply the Grace day by day to enable me to continue to do this work He has given me.

I do not know what the future holds but I am glad I know who holds the future.