This week started so well. With friends, happy children, having met with family, it was blessed even though we missed Church. as we drove home my mind was flasing forward to the week ahead...busy busy, appointments galore, some to be looked forward to others we dreaded.
On arriving home of course we eceived the SALT report. But children to be sorted settled and school bags organised. So by the time Monday morning came there was only Peadiatric appointments on our mind.
Oh how I love having a carer who is prepared to come with me and enable David to utilise his time in the things he excells in....that usualy includes a saw, hammer, drill etc! And so we managed a whole morning at th hospital. The peadiatrician was running late. However it gave Rosie time to demonstrate her new happier persona to the clinic staff. It also gave Eve time to have a few moments of believing breathing to be optional, it also gave me time to check that our appointment time for Friday 8th had been altered. So by the time we were called in most of what I needed to discuss was sorted into priority in my mind. A quick flash of prayer for help with all I needed to remember and deal with as we enetered the consulting room and we were on!
I really really like this peadiatrician. it took a while for me to understand her body language and wit but after her care at christmas I feel I can trust her and talk with her as I did our old Pead.
it started well with her ensuring Rosie and Eve were at ease before she even spoke to me.
we broached many topics rosie's epilepsy, the specialist reports from Nottingham, the ned for urgent actioning of Eve's brace...we discussed the SALT report, we agreed to trial a new drug for eve's drowning difficulties. And so by 12 midday we were on our way.
Good job to as we had to get Rosie to school and be home for a 1pm appointment. It was 12.59 as I reversed onto our drive! unfortunately we realised that we had left Eve's feed pump at the hospital, and so Carer kindly offered to head back to collect it.
OT arrived about 1.15 but without the rep who was supposed to be resolving issues with Eve's chair and sleepsystem. Apparantly the company he works for had not supplied the bolts missing from the chair and he had decided not to come! ARGGGH the bd could still have been resolved!
Oh well, OT had good opportunity to spend time with eve, helping me to sort out feed and positioning and a good chat bout other issues coming up! It gave her a break too having also been dashing round all morning!
Tuesday was dominated with the Council meeting, see previous posting. It ended with Joshua and Christina going out with their Action for Young Carers worker which was great.
Wednesday, we managed to resolve the emty cupboard syndrome. On of those wonderful friends from Church had offered to take me shopping and so together we hit Asda! It is amazing how much fellowship and companionship and fun and laughter can be gained whilst shopping! Thanks Sue it was good. We even had the till operator helping us to pack...slow but steady! I did find myself struggling to remain upright at this point and thankfully Sue pulled out the till operators chair from the next till which was not in use! I gratefully sat before I collapsed in a heap!
we enjoyed a cake and coffee together before heading home! I had a lasagna to mak for visiting children...Joshua and Christina each had a friend to play and thankfuly the evening was uneventful!
Thursday I woke exhausted and thankfully had little organised outside of home. I had reason to be even more grateful for that when I realised David was now unwell! Sending him back to bed I was grateful that Our morning carer was still coming despite Rosie being in respite, it meant I could concntrate on doing the meds that he usually does whilst Morning carer was able to deal with Eve. Once the children were all delivered I sen the morning dealing with paperwork and phone calls. Collecting Eve from preschool at 11.30 I retunred to moe calls and paperwork before deciding a rest would be good. Eve's physiotherapist arrived just before 4.30 and brought some Leg Gaitors. Eve loved them...she was placed on her feet and held herself tall it was amazing! Her head control has come on so much recently and with her legs held straight it seemed to give her more trunk control. We stood her by the chair and with a little control at hip and head she was able to stand and play her piano! It was a tear jerking moment!
On arriving home of course we eceived the SALT report. But children to be sorted settled and school bags organised. So by the time Monday morning came there was only Peadiatric appointments on our mind.
Oh how I love having a carer who is prepared to come with me and enable David to utilise his time in the things he excells in....that usualy includes a saw, hammer, drill etc! And so we managed a whole morning at th hospital. The peadiatrician was running late. However it gave Rosie time to demonstrate her new happier persona to the clinic staff. It also gave Eve time to have a few moments of believing breathing to be optional, it also gave me time to check that our appointment time for Friday 8th had been altered. So by the time we were called in most of what I needed to discuss was sorted into priority in my mind. A quick flash of prayer for help with all I needed to remember and deal with as we enetered the consulting room and we were on!
I really really like this peadiatrician. it took a while for me to understand her body language and wit but after her care at christmas I feel I can trust her and talk with her as I did our old Pead.
it started well with her ensuring Rosie and Eve were at ease before she even spoke to me.
we broached many topics rosie's epilepsy, the specialist reports from Nottingham, the ned for urgent actioning of Eve's brace...we discussed the SALT report, we agreed to trial a new drug for eve's drowning difficulties. And so by 12 midday we were on our way.
Good job to as we had to get Rosie to school and be home for a 1pm appointment. It was 12.59 as I reversed onto our drive! unfortunately we realised that we had left Eve's feed pump at the hospital, and so Carer kindly offered to head back to collect it.
OT arrived about 1.15 but without the rep who was supposed to be resolving issues with Eve's chair and sleepsystem. Apparantly the company he works for had not supplied the bolts missing from the chair and he had decided not to come! ARGGGH the bd could still have been resolved!
Oh well, OT had good opportunity to spend time with eve, helping me to sort out feed and positioning and a good chat bout other issues coming up! It gave her a break too having also been dashing round all morning!
Tuesday was dominated with the Council meeting, see previous posting. It ended with Joshua and Christina going out with their Action for Young Carers worker which was great.
Wednesday, we managed to resolve the emty cupboard syndrome. On of those wonderful friends from Church had offered to take me shopping and so together we hit Asda! It is amazing how much fellowship and companionship and fun and laughter can be gained whilst shopping! Thanks Sue it was good. We even had the till operator helping us to pack...slow but steady! I did find myself struggling to remain upright at this point and thankfully Sue pulled out the till operators chair from the next till which was not in use! I gratefully sat before I collapsed in a heap!
we enjoyed a cake and coffee together before heading home! I had a lasagna to mak for visiting children...Joshua and Christina each had a friend to play and thankfuly the evening was uneventful!
Thursday I woke exhausted and thankfully had little organised outside of home. I had reason to be even more grateful for that when I realised David was now unwell! Sending him back to bed I was grateful that Our morning carer was still coming despite Rosie being in respite, it meant I could concntrate on doing the meds that he usually does whilst Morning carer was able to deal with Eve. Once the children were all delivered I sen the morning dealing with paperwork and phone calls. Collecting Eve from preschool at 11.30 I retunred to moe calls and paperwork before deciding a rest would be good. Eve's physiotherapist arrived just before 4.30 and brought some Leg Gaitors. Eve loved them...she was placed on her feet and held herself tall it was amazing! Her head control has come on so much recently and with her legs held straight it seemed to give her more trunk control. We stood her by the chair and with a little control at hip and head she was able to stand and play her piano! It was a tear jerking moment!
Today ws another day full of appointmnts, the biggest being a statement review and planning meeting for Eve's school placement in September. This may seem a little early, however the school we hope she wil attend is a mainstream school and will need some adaptations, (the la will love us) these will take some time. It was on the whole a positive meeting. the Educational Psychologist who has taken over Eve's case is lovely, very observant and arrived early to observe Eve with her support worker. He was able to see Eve in a very good mood making obvious choices and using some great communicaion skills. the targets set last IEP were being met but still had valu in bing lft in place, a few changes and progesive moves but on the whole we felt the work she was doing wa appropriate and left scope for further progress. physio therapist was happy with the progress se has seen and can really see now the child beneath the disability...that has been a hard slog but we have got there, I view her as much more of a friend than an enemy which is great, and deffinitely an answer to prayer! The headmaster of the school we hope Eve will attend had some sensble questions to ask and ws able to voice som concerns that need addressing. Most of his concerns were ones we had already raised and were anxious to be looked into, the most pressing being the fact there is no hygene suite and Eve will need somewhere to be changed. I ws keen to point out that a temporary measure would be to put in a small changing bench but that had to be backed up by a firm commitment to follow through with more appropriate provision for changing and toileting.
On the whole I felt this was a really positive meeting and I hope the actions identified will be carried out.
And so it is late Friday evening, the week is almost over...we still have one more appointment tomorrow and I need to get to Spec Savers to ge a replacement set of glasses for Eve...she left hers behind last weekend!
the weekend seems to come by so quickly, into the second month of the year already. This has been a month of prayer, despair, hope, fear and looking towards the future....hmmm the future can be a scary place can't it?
sometimes even though I am sure of God's hand on my life, I dare to wonder, I sometimes am forced to consider, I ofen wish I hadn't thought about....what the future holds.
I do not know what the future holds, but I am glad I know who holds the future
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