Chilling during chiropracty

Not sure how I expected Reuben to respond, but wanted to try chiropractice, knowing what amazing benefits it's had on me over the last few days, going from not being able to walk to being able to join in with PT, and he was Mr Cool throughout. Rather wondrous really. Reuben's head tilts to the right and thus the neck muscles on that side are shortened (torticollis) and we wanted to try another approach. I think the video speaks for itself. Reuben was somewhat mesmerised by the experience, entranced really. Dr Charley will continue to treat Reuben as part of my own now regular therapy and is wonderful with him.

Beautiful mamas

Beautiful mamas
Beautiful faces
Friends I have made
In far flung places

Eloquent writers
Creative passions
You capture your children
With love and compassion

Names I have etched
In my daily thoughts
Head, full of ideas
Of things you have taught

Continue to inspire
Continue to teach
Of the love of motherhood
Of the goals we can reach

Days when I wake up
Think, How can I cope?
Yet you fill me with promise
You fill me with hope

It’s hard to imagine
How far we’ve all come
We've come through together
To accept, not succumb


- I had these words dancing round my head whilst in hospital and wanted to get them down, so comforting are your thoughts and words in difficult times. Cx

Sunday afternoon, fresh air

Sandy feet

Sandals on Mother's Beach, with thanks to the Solodkins

"How much, Daddy?"

Swinging shadows, Mother's Beach

Catching up on some good stuff

Gross motor: Standing up in crib

Reuben standing up in crib in 5 seconds (as a result of this, we lowered the mattress last night!). This was him yesterday morning. He is finally over throwing up and well in himself. Reu's a devil of a boy; you turn your back for 5 seconds, hear a big laugh, look around and there he is standing and doing dancing baby. So this morning, after a couple of frustrated attempts last night at standing with the now oh so high rim, I see that overnight he's learnt to stand up in the lowered crib. Now that really did deserve some cheerleading this morning from Jason, Kristina and I, welcomed by a huge smile and laugh from Reuben. Pure magic! I just need the Part II video now.




Fine motor & cognitive skills: stacking rings

A wonderful skill for Reuben to have mastered this summer given he wore hand restraints during 5 months of intubation on the ventilator to stop him pulling out the tube. His hands are his absolute Godsend, his gateway to communication and development. Perhaps that's why they continue to be such a focal point for me when I photograph him.




My new chiropractor Dr Charley, he who is blessed with magic hands, and is a specialist in paediatric and pregnancy chirocare, is going to start treating Reuben for his congenital torticollis (tilt of the head) although we've been working on it solidly since birth ourselves with the help of PT.

Communication: Signing I love mama (to follow)

Asleep with Kristina

Home sweet home!

Thanks for your messages, your visit to the hospital Victoria (Moriah's mummy) just moments after we left... sorry. And all the calls from friends near and far and Jason's family for your offers to fly over.

Just gone 16hrs without a throw up until his usual morning nebuliser/secretion build up throw up. Hurrah! I slept with Reu on the Shaker bed beside him at home whilst Jason slept in a proper bed and I notice this morning he has only just had a shower. I told him there was no point him disinfecting the toys and blankets and my skirt (Kristi, I believe it's saved although I guess it'll never quite be white white again) if he's walking around like an overgrown infestation of pseudomonas and everything else you catch in hospital. Yet why is that despite the pregnancy stuff, I haven't been non morning-sickness sick since Reu's been with us? Am I completely immune or do I just take the lion's share of sleep every night.

Just before discharge, I spotted Dr F, one of Reu's cardiologists from a year back and rather uncooly went running out into the corridor to see him and say "Quick, come and see Reuben". Well you would, wouldn't you, if that certain Dr F so closely resembles Brad Pitt.

Reu awoke this morning and I only had to say "I love mama" once and he signed all three words back. I actually think he deserves to be signing "I love daddy" considerably more right now as Jason hasn't left his side since Wednesday. Reu loves the game of "I I I", "You you you", "I, you, I, I, you, I, you" that we play and he almost tests us alternating between "I" and "you" in sign so fast that we stumble over our tongues and laugh away. And said game is often interjected with "love" just to push us even further.

Kristina back from Portland tomorrow. He'll be so excited to see you again!

PS re the little girl next to us in hospital. As you say Kristi and indeed my friend Janelle has mentioned it before, you just don't know the circumstances of other families and why there may not always be there. I know they must be coping as best they can after a YEAR in hospital.

* * *

PSS Been a very tough week. Because I wasn't able to devote the time I needed to the change of tenancy for the 3 days in hospital (despite my explanations, there didn't seem to be an understanding of a lack of at hand business facilities in the hospital), despite having worked on things solidly for the last couple of weeks, the deal with our new tenants on the house in London has fallen through. I'm not sure what will happen now with mortgage payments and the like unless we can miraculously find a new tenant. It's been a bad few weeks of going back and forward on contracts and with Reuben being sick, what I needed like a hole in the head. Lovely news to get home, this being just a fraction of the property-related (flood, broken boiler, legal battle) issues we're stuck with. I'm ready to give up the property game that's for sure and yearn for things to be simpler.

Happy Birthday cousin Mitch!

The Railway Children

Mitch and Mum Lisa with Reuben

Sending a huge happy birthday to you Mitch and thanks for always thinking about Reuben with your little messages.

One of these days I'll get round to posting shots of Reuben's UK family from our trip back in May and the places and people we met, but for now, here's Mitch, his brother Josh (GCSE kid and the author of "The alternative guide to studying") and Mum Lisa with their Uncle Jason on the Severn Valley Railway.

Reu still in hospital

Just got home tonight, Jason's there still with Reu. Reu has a stomach bug, gastroenteritis. Is his usual, happy-go-lucky self, signing away to everyone but has been throwing up with terrible diarrhea for a week now. Both of us have been in the same clothes day and night since Wednesday so thought it was time I got home and got clean especially as poor Reu transformed my white skirt today into a luminous yellow diarrhea mess and I drove home tonight in paper trousers.

A former cardiologist of Reu's popped in to visit after seeing his name on the board and remarked how beautiful and grown he is, how wonderful his golden hair is (yes I know I can't stop running my hands through it), so very sick was Reu when Dr O'D last saw him, the same Dr who, in our parent conference exactly a year ago before the heart surgery and with a view to giving an honest prognosis for the future, then said that the next year would be "frustrating" but that he could see him happily playing in a year's time. That gave us a lot of hope back then. And frustrating? that's one sure way to describe the last year.

The wards/floor are a bit of a hellish experience by all accounts. Since Reu is colonised althought currently tests negative for MRSA/pseudomonas, we were in isolation which meant a private room, but at 1am last night they decide to move us into a room with a little girl who like Reu tests negative but is still on contact precautions. 1am!! they move us with the expectation that Jason who's barely slept will drive home since only 1 parent can stay in a joint room at one time. We are not amused and ask to be discharged first thing in the morning because of this shambles.

Of course we're torn by the fact that we can certainly look after him a lot better ourselves at home, and take turns getting some rest, but can't of course bring him home on an IV to treat his dehydration. Today he was put on a 3hr Pedialite feed only for us to discover the bed was being fed, not Reu as he wasn't connected to the pump. Jason and I have done every suction, every diaper change, responded to every alarm, dealt with every throw up. It's not safe for Reuben to be in a room by himself when he's throwing up constantly and there's a risk of aspiration pneumonia when the vomit gets into the trach. He's used to having someone with him at all times and as fantastic as the ICUs are at Children's the floors are just too stretched with a low nursing ratio to patients and you're lucky if you see someone to help within 20 minutes of the alarm sounding. We're ironically put into the same room where I arrived to find him desatting from a mucus plug, alarms going off, no attendance, remember that? last October and my m/c happened the day after.

I've left my boys next to this poor little girl whose parents aren't there at night to listen to her moaning "help, help, I wanna stand up" on an endless reel. I don't think I'll get that sound out of my head for a long time.

Having voiced our concerns, and with Jason able to stay last night after all once we tell them he's not up to a 45min drive at 1am, we've been assured things will be better tonight, no 1am room moves, no letting alarms go unheard, and Jason can at least have the make shift bed I've been sleeping on for the last 2 nights. My scapula pain and sciatica have been crippling for the last few days. Just before I arrived at the ER on Wednesday to relieve Jason and Kristina, the chiropractor put me through the best pain I've ever felt and I'll be going 3 times a week now til I've delivered, but the effects wear off pretty quickly when you're sleeping on a hospital chair. The pain shifts between the scapular, sciatic nerve and then the pressure on my liver so it's a matter of trying to fall asleep with a hot pack on one side before another of the symptoms kicks in again. The way I feel is so debilitating at times and puts enormous pressure on Jason looking after us both. And contractions have started kicking in too. Little baby inside, do you ever get some rest?

I think we're still going to insist on discharge tomorrow unless his electrolytes come up really low. So awful to watch him throw up endlessly, something we've dealt with since October but on an extreme scale this week, 5 times a morning maybe. They've just run an EKG/ECG on his heart which concerned me as his heart is strong, but maybe just to rule out any problems there. That's all ok Jason's just confirmed.

Thanks for your texts and messages. So very kind too of nurse Kristina to visit with her mum with cookies and drinks.

It's 11pm now and I must get some sleep before tomorrow.

PS before I arrived at the ER on Wednesday, Reu had been signing 'love mama" all day. How that melted my heart. How enchanted am I by my kind, sweet, loving boy. I just wish, day after day, that I could be more like him.

Jason & Kristina take Reu to ER

Been up much of the night and Reu's thrown up maybe 6 times since, violent retching and throw ups of formula/Pedialite mix, still no fever. How can there possibly be anything left in his stomach? It's been 5 days. I give him a Pedialite bolus on my lap over a long period and that comes back up too. I have to lie down now and get to the chiro later. Kristina arrives early thankfully. Jiffy the trach nurse has called ahead to the ER to get Reu seen to straight away. Don't know what's causing this. In OT yesterday all he wanted to do was cuddle me. So unlike him to be clingy and yet in between constant luminous yellow diarrhea no doubt from the Pedialite and throw ups, he's happy and signing and active. I send them off with Reu holding a little bottle of Pedialite after he so sweetly signs "Drink". He's signing "Love Mama" from his carseat as I stand on the porch. I hope he sleeps in the car like I'm about to now. I miss him already.

20th August, a year since Reu's life changing heart surgery. Has it really been a year since that momentous day?

Summertime faces in pretty places

Pregnancy

Still in a lot of pain daily and nightly from sciatica (or pelvic girdle pain) and backache. Hot packs are constantly in and out of the microwave. Seeing a new chiropractor tomorrow to get some help. Couldn't make it yesterday, Reuben's been sick with a virus which is accompanied by no fever, just an awful lot of throw ups and diarrhea and it's difficult to know what to do.

Yet too many times I've almost fallen over as my left leg has caved in and I'm longing for that wheelchair again. Pain has me tears at times. Many of you have so kindly written with your own sciatica experiences and thanks for your advice. It amazes me how many billions off women have gone through pregnancy and yet how difficult it really is on our bodies. And then there's the endless heartburn and morning sickness which hits me first thing unless I get my juice down sharpish upon wakening (thanks Jason, morning juice man.). I've been getting uncomfortable pressure on my liver too, apparently the closest organ to where our babies like to nestle in, right under the ribs and sometimes if I'm feeling pain there, it at least diverts attention away from my pelvis or back.

Standing up in bed milestone

I recall Kristi beautifully describing how she'd arrive at Preston's bed in the morning to see him standing waiting for her to come in. This weekend we got to experience that joy for ourselves. I heard Jason frantically calling through to me as we so often do "Come quick" and I arrived to see Reuben transition from lying on his back, to sitting, to kneeling, to standing all by himself in his crib and doing dancing baby. Every aspect of his maneouvre has been practised 1,000 times. He is finally free of our hands, holding on by himself and loving it!

The best laid plans

It's wonderfully reassuring and a huge relief to have Lisa, Jason's sister and future Godmother to Buttercup, booked and ready to come over in November for 2 weeks before and after the birth. Things are falling into place. We have the day and night nurses well trained and comfortable in their roles (Kristina has taken it upon herself to learn the whole ASL alphabet and 64 signs so she can keep up with Reuben, a huge gesture of support and commitment). We'll need to decide if Jason will stay home with Reuben and Barbara (night nurse) or be in the hospital for the 5 days with me post c-section recovery. I think he's anxious to be with Reuben in case of an emergency and I guess torn where he should spend the night. So Lisa, if you're reading, maybe you'll be the one helping me through feeds, nappy changes and loo trips in the wee small hours instead!

Reuben signs "I love Mama"

... and has a wonderful vocabulary of 50 signs now. This is his first mini sentences and is lovely given he took so many more months to learn Mama than Daddy.

I love it when he picks up or looks at a teddy, doggy, ball or book and signs those words and when I shake pajamas in front of him, he'll sign 'jamas. Not only does he respond to the words with signs (receptive), but he is now actively using his vocabulary to communicate (expressive). That's a huge communication leap. I love his signs for Monkey and Zebra but given his daddy acts like a monkey with him for a solid hour of testosterone fueled fun when he gets home every night from work, and the two of them discover energy together from I don't know where, he's been well trained.

I want to make a little book now of his first 50 signs as I think it's a great keepsake of a wonderful milestone so longed for to be reached. Thanks Ellen! Yep, I'll try to capture on video too.

My little friends in CHARGE

Amelie (born 2005)















Ben (born 2005). Please keep Ben in your thoughts and prayers for his 21 October choanal artresia repair surgery.

Ellen (born 1985 I think!). One of Reu's older friends and great supporters. A big pretty one but perhaps a little too old for our Reu!

Eva Nicole (born 2005)

Evan (born 2005)














Gracie (born 2003). Please keep Gracie in your prayers as she's been struggling with feeding for the last few weeks since her heart surgery and it is a frightening time for her family.












Jack (born 2006)















Luke (also born 2007)

Angel Lucas (also born May 2007). Now in heaven patty caking with the angels. Please continue to keep the Weindorf family in your thoughts and prayers as they grieve the loss of their beautiful, amazing son with whom we have shared so many of the ups and downs of life over the last 16 months.














Max (born 2005)
















Moriah (born 2008). Please keep the Nelson family in your thoughts and prayers as they prepare for Moriah's heart surgery at Stanford on 14 November.

Vivian (also born 2007)






Reuben's always on the look out for new friends in CHARGE, especially the young pretty ones! If you'd like to join this page as a little friend in CHARGE, please add a comment.By

Asleep

When I survey the wonder in your eyes
On bended knee beside your crib at night
And kiss curls frame the face that holds those eyes
You hold that gaze, it sets my heart alight.

When fast asleep, your fingers dance in words
And tell of dreams, enchantments, learned thoughts
Bewitched am I by aura, radiant light
'Neath fairy tales that speak of wooded walks.

And gentle shadows dancing softly cast
O'er tiny hands with dimples in a row
Such gentle hands that daddy's hands do touch
And downy toes then flicker all aglow.

Your cupid's bow that graces your dear face
I kiss those lips that ne'er fail to melt
My heart and when you try to speak
It grows the vines of love I've always felt.

Yay you have put me under your sweet spell
I cannot lift your face from my closed eyes
And when you wake in morning's summer light
Afresh! Anew! for life with great surprise!

- Mama

Disneyland!

Mickey, always takes a good photo, Reuben a little dubious about this guy with a perma smile he's waited 30mins to see, but the sweet thing is on reflection, I see he's signing 'teddy'. How very touching is that

Reuben's first trip to Disneyland. May be considered too young (I was looking at pics of how much Eva enjoyed it but she's quite a bit older), but for him it was a sensory explosion of light, colour and sound and he absolutely loved it, especially the rides in the dark. At the end of Peter Rabbit, he was clapping his hands. What a delight! A roasting hot day in SoCal and it ended up with me being taken out in a wheelchair with a diagnosis of sciatica, what has become a painful nerve and muscle problem in my left leg in pregnancy. I literally couldn't take another step and my left leg just sort of caved in as it had the day before. The staff were great though as I was in a lot of pain and Jason had the 2 of us to look after. We've got a California pass now so a couple more trips in the next few weeks. I remember my first trip here with cousins Barrie and Karen when I was 19 and how much I enjoyed it then. I was great this time to experience the other side of Disney, the kiddie rides, that til now a hidden zone of pleasure. I'm not sure though how much we got to see ourselves as our eyes were transfixed on Reuben's reactions.

My playroom

I love the sheer abandonment of the above shot

the alphabet mat (which I keep extending) makes for a softer fall and on Lorna's advice, now spells Reuben Jack

Against the mass of primary colours in the playroom, one wall will be dedicated to this huge Two giraffe heads framed shot, along with smaller black and white animal shots on the adjacent wall of Lion, Zebra, Elephant, all of which Reuben can sign (although elephant looks remarkably like thank you!). The African theme is a reference to our honeymoon in Tanzania where the shots were taken

little red riding horse, that's actually a reindeer

I really love my books!

elephant playing peek-a-boo. Mama and Daddy got these little red cupboards up for me to practice Open & Close, I'm actually pretty good on that front

some of my lovely presents

my beautiful baptism gifts

I love ducks but have been refusing to sign them!

Americans like lots of bathrooms, as does mama, and this is where I have my bath, just off the playroom

My bedroom

First sleep in my own first bedroom

My little clothes

Teddys await my arrival.

Gifts from the Swanns, Anne, Nana & Grandad and Sarah

With mummy or daddy's weekend bed beside me

Fable

After my baths

My bathroom

My gift at birth from Mummy's best friend, Erica

Daddy never forgets the details now

Pictures in the gallery that leads to my room

Friends of mine will know how long I've waited to create a nursery for my baby. Here's Reuben's new bedroom (that is, before the onslaught of medical apparatus, for artistic purposes). I'm a modernist-minimalist and so the palette is very neutral and thus in stark contrast to the explosion of colour I've used in the playroom. In both rooms, I hope friends and family will recognise some of the beautiful gifts that have been given to Reuben since birth. Starting with a blank canvas, they indeed were the inspiration for each of the room's themes. A bed to match Reuben's crib design sits in the corner and is used by Jason or I at the weekends when we choose not to have a night nurse. With the pulsox monitor on, we are able to get a good sleep beside him. Baby Buttercup will sleep in with us for the first 6-12 months before joining Reuben in his bedroom. I like the thought of the babies sleeping side by side.