Wednesday, April 30, 2014
Tuesday, April 29, 2014
Monday, April 28, 2014
Rough 24 hrs
Poor Naomi a rough 24 hours coming off dihydrocodeine, let's hope it doesn't last too long.
Sunday, April 27, 2014
Tennis club grand opening of the new club house/ shop
Andrew Castle came yesterday to open the new club house at the tennis club where Luke and Richard are members. A great afternoon for the boys. 
Saturday, April 26, 2014
Friday, April 25, 2014
Teaching started
Naomi has now had her three lessons from the medical needs team ; English, maths and science. It will be easier next week now that she has met all three teachers. We have friends coming to give other lessons Monday and Fridays to keep up the rehabilitation back to full time school by next term .
Wednesday, April 23, 2014
English and Maths
Naomi exhausted after English lesson yesterday and Maths today. Good to get going again ,so she is ready for school in a few weeks . Naomi will do a few part time days before the end of half term.
Tuesday, April 22, 2014
Home tutors start today !
Naomi starts her home based tutoring via the medical needs team ( Bedford) . We are getting 3 lessons a week English, Maths and Science. Tuesday, Wednesday Thursday.
First lesson today English . The English teacher's daughter had scoliosis surgery 10 years ago by the same surgeon ! How amazing is that.
Monday, April 21, 2014
Sunday, April 20, 2014
Saturday, April 19, 2014
Day 18: holiday
Daddy and Luke building decking yesterday with / for Mark our neighbour as a thank you for physio sessions he gave Naomi after her leg surgery in January.
Auntie Clare and Auntie Rebecca visited today and we managed a short walk round to the next road after a game of monopoly break ( card version!)
Thursday, April 17, 2014
Day 16: medicines
Yesterday I reduced one of Naomi's codeine doses , and Ondansetron tablets but added piriton as her scar is very itchy now the dressings are off. She managed to stay mobile despite being in a bit more pain.
Alan and Cathy West ( our pastor and his wife) visited yesterday. Grandma and grandpa visited today
Looking forward to Richard being on holiday for 4 days. He's remained working throughout this time and work have been very understanding . It's his 45 th birthday on Sunday !
Naomi's tablets!
Wednesday, April 16, 2014
Tuesday, April 15, 2014
Day 14: Our own personal marathon
We are balancing night and day with Naomi at the moment ; it's going to be 4 / 6 more weeks before she's back at school and back to " normal" then 6 months of being careful while the bolts and bones fuse including no swimming , and 2 years of no PE.
As we left the HDU I said " long walk to freedom ! " ; we have paced ourselves these last 6 years; it's been a marathon and the finish line is near but not just yet.
As we left the HDU I said " long walk to freedom ! " ; we have paced ourselves these last 6 years; it's been a marathon and the finish line is near but not just yet.
Monday, April 14, 2014
Day 13: Mummy had a chance for a walk
Naomi managed a slow walk round our cul de sac today and 20 mins in the sun if a little cool. Then while she rested and Richard worked from home and Luke was at tennis club , I managed a walk round our village !! Pure joy.
Sunday, April 13, 2014
Day 12: Sunshine !!
A blood test after Naomis surgery; to look at her iron levels after having had a large 2 L blood transfusion, showed her Hb to be 9 not great but acceptable Naomi is looking a bit pale still. ( normal range 11-16 ) .
The paediatric team are now routinely testing Vitamin D levels (25 OH D) and found that Naomi is severely Vitamin D deficient 9nmol/L [ usual range being > 75 nmol/L and deficiency as < 50 nmol/L ] .
So we are getting out in the sun each day and she's now on 10,000 IU of cholecalciferol for 1 month.
Saturday, April 12, 2014
Day 10
Naomi managed last night without oxygen but did have a "drop in her oxygen SATs "between 4 and 4:30am down to 90% for a few seconds before going back up to 95% each time . I sat up by the machine all night and watched the pattern ; only sleeping just briefly between 5 and 6. The doctors were happy that she can correct her SATs snd are happy for us to go home with a recommendation that Naomi has a sleep study once she's recovered from the surgery . Richard has now swapped with me and I've come home to get some sleep before helping bring Naomi home tomorrow!
Friday, April 11, 2014
Day 10
Naomi managed last night without oxygen but did have a "drop in her oxygen SATs "between 4 and 4:30am down to 90% for a few seconds before going back up to 95% each time . I sat up by the machine all night and watched the pattern ; only sleeping just briefly between 5 and 6. The doctors were happy that she can correct her SATs snd are happy for us to go home with a recommendation that Naomi has a sleep study once she's recovered from the surgery . Richard has now swapped with me and I've come home to get some sleep before helping bring Naomi home tomorrow!
Day 10 :
Lord, as I face the challenges of today and of the future, I thank you for the victories you have given us. I do not rely on my own strength for the future but instead put my trust in you.
Thursday, April 10, 2014
Day 9 : Good results
Well all the targets were met today.
X-ray :went well and doctors are happy , we will get a copy before discharge but it's pritty much as we thought
OT : signed us off and gave us a raised toilet seat for home.
Sitting Shower went well
Curry for lunch went well
Visit from Grandma and Grandpa
Visit from the , paediatric team, surgical SHO
Walks up the ward
Physio: signed us off after doing stairs
So just waiting to have a night where the oxygen saturation doesn't drop below 92 %…. Then we can go home !!!!
Day 9 Meet my SHO!
This is Charlie , Naomi's SHO - he's been great and is so like cousin Hannah's fiancé Charlie!
This short essay has been a very helpful reflection for me these 13 years
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Day 9: "hold on just a little while longer …(traditional Spiritual )… beautiful song I sang at a recent choir festival
Peaceful night on oxygen. Breathing in just air during the day with no problem. Naomi managed 2 more walks down the length of the ward (4 walks in total ) yesterday . She couldn't be persuaded to have an afternoon nap ( ¡Mummy did !). Naomi is making good use of the surprise mini iPad we bought her . Trouble was we gave it to her Day 3 ,while she was still spaced out on morphien , she thought is was a dream!
X-ray in brace today and attempting the , newly purchased, " physio stairs" today . For the last 15 ops "doing the stairs" has meant the dry or wet or icey , even snowy at times stairs, that are the exit from the ward to the road where the car is parked up on double yellows . Those who've visited know what that means!
2 more hours until breakfast !
Wednesday, April 9, 2014
Day 8
Naomi maintained her oxygen (SATs) all day off oxygen ( in air) which is excellent. Hair wash lying down , bed bath , brace arrived then left for adjusting , physio- walking . Granddad visited ; then she slept well in the afternoon . Finished brace arrived again and more walking to the loo this time !! . Catheter came out , antibiotics , sleeping now with oxygen mask . Luke at Jan and Mathew Ewings - he had a great day despite his sore throat / tonsillitis . Luke is 12 on Friday !!! We went to see "Captain America " and a day punting in Cambridge as a pre birthday treat before coming here. Richards back home now after late shift . I'm back on the ward in an empty bed next to Naomi. Hoping for another quiet night!!
Tuesday, April 8, 2014
Day 7
Funny to think this is the last spine operation . We've lost count but think it's about the 15 th?
Lasting image of Stanmore here's to the new hospital build ! Est completion 2030…
Day 7 : April 8 th
Naomi walked a few more steps yesterday so hoping for more today so the catheter can come out ; maybe tomorrow. Better night on oxygen, off oxygen now it's morning and alert.
It was lovely to see Hannah Scott our niece/ Naomi's cousin last night especially as it's just 8 weeks until her wedding : praying for Charles and Hannah.
Luke (who I discovered has tonsillitis ) and Richard came last night and I had a rest until 11 ! The other patients went home so the bay was empty ; we had a short amount of tine just the 4 of us; lovely .
It was lovely to see Hannah Scott our niece/ Naomi's cousin last night especially as it's just 8 weeks until her wedding : praying for Charles and Hannah.
Luke (who I discovered has tonsillitis ) and Richard came last night and I had a rest until 11 ! The other patients went home so the bay was empty ; we had a short amount of tine just the 4 of us; lovely .
Monday, April 7, 2014
Day 6 : 7 am
Brace casting this morning ! That means standing up and being wrapped up in plaster cast , once dry ( about 5 mins) it is then cut off and removed . This is then used , as an exact mould of Naomi, to make a plastic brace that she can take on and off. This will be about the 26 th brace Naomi has had since she was 4 years old.
Day 6: Dawn
Our "guardian angel " is called Sarah! She is Naomi's night nurse and has been on Duty every night since we came back to the adolescent unit/ Coxen ward. It's so good having the same nurse , as they get to know how each patient behaves. Naomi's been a bit confused at night, not surprisingly since she's on strong pain relief drugs.
Making small steps, literally , each day ! Welcoming in day 6 with the dawn chorus .
Sunday, April 6, 2014
Day 5 : still on oxygen
The doctors are concerned Naomi's still needing oxygen so they did a chest X-ray , to be sure, today very painful moving . The lungs look fine so that's good. We are trying to get the balance of pain relief so she can mobilise verses less drugs so can breath better. Keep praying
Day 5
Better night last night and getting ready to stand again. Lots of pain relief still so a bit sick. Grandma and Grandpa visited yesterday morning then Uncle Russell in the evening. Auntie Clare and Auntie Rebecca coming today and Luke tonight .
Saturday, April 5, 2014
Day 4
Naomi's had a rough day but was still able to sit up with feet on the floor and stand for a few seconds " my back hurts what ever position I'm in so I might as well stand "
Luke dispatched to scout camp I left him playing cricket once they had got the tents up. Richard and I are here until Sunday .
Friday, April 4, 2014
Day 3 Naomi sat on edge of the bed with 2 physios and put her feet on the floor
Luke delivered to scout camp so we can focus on Naomi mobilising .
End of night shift …
Thursday, April 3, 2014
Late night turn over
Not the Apple variety unfortunately ! End of a long day - about to handover to Rachel for the night shift... Naomi has done so well today . She needed to turn and lie on her left side and really wasn't chuffed at the thought of waking everyone else up in her 'expressed' discomfort !
She got there and several lots of painkillers later is settled again.
We are fairly certain the physios will talk about more adventurous activity tomorrow to which I'm fairly sure Naomi won't be interested in . Her yes will be yes and the no will be NO ! We are so proud of her.
She got there and several lots of painkillers later is settled again.
We are fairly certain the physios will talk about more adventurous activity tomorrow to which I'm fairly sure Naomi won't be interested in . Her yes will be yes and the no will be NO ! We are so proud of her.
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